The day I got the call from my doctor telling me the results of the biopsy were back and it tested positive for cancer is when I started dreading this week. After the initial shock and heartbreak of the results, I jumped immediately to this week. I would have done almost anything to avoid this part of it. I would still do almost anything to avoid this. But I can't this week is now.
This is the week I'm going to lose my hair.
On October 29th, after the call, I was crying, laying on our bed with Jim's arms around me. That day I sobbed, "I don't want to lose my hair."
When I had the choice of a lumpectomy or a mastectomy, I was all set to go with the more invasive mastectomy because I thought I wouldn't need chemo. I thought that if I had a lumpectomy that I would need chemo but not with a mastectomy. Go ahead and cut off my boob.... if I can keep my hair, chop off the boob!
My oncologist told me that my hair would start to thin within two weeks. My oncology nurse said I would lose it within three weeks.
Tomorrow is two weeks.
When I got home from a yoga/meditation thing last night, I was in a great mood. I had fun with my friends and it was nice to try something different.
I've had the whole losing my hair thing in the back of my head for weeks now. All weekend I was thinking about it. Originally I was going to shave my head this weekend to shave it off before it started falling out. But it wasn't even thinning. Why shave it if it wasn't thinning yet?
Then I got home from yoga. I put my hands through my hair and a few strands were in my fingers. I went into the bathroom and shook my head over the white sink. I few strands were in it. My heart sunk.
I knew the doctors said I'd lose it by the end of February, but it hadn't even started to thin. I wasn't even "shedding" like I did when I had my long hair! Somehow I think deep down, I thought there was a chance I'd avoid this. Deep down. But that's not the case.
The first thing I did when I woke up this morning was to check out my pillow. No hair was on it. I let out the air I didn't know I was holding in my chest. But now, putting my hair through my head, more pieces come out in my fingers. It is thinning now. One piece here, two pieces there.
Last night, when we went to bed, I rested my head on Jim's chest with his arms around me. I was crying into his chest. I didn't want this from day one. This was my fear from day one. This is what I would do almost anything to avoid. And it will happen this week, most likely within the next couple of days.
I am losing my hair.
I'm nervous about going back to chemo tomorrow, after the ambush about the port. And now with my hair this week? If they start ANYTHING with me about the damn port, I am going to snap. I'll blow a gasket. As soon as I get there I'm going to have to say something about it so they know how off I'm going to be. Otherwise I will be crying and yelling and causing a HUGE scene in the infusion room. It won't be pretty.
I'm sure anyone who has ever seen me slightly angry will understand. Not too many people have seen me actually snap. Not too many have seen me at my breaking point. A small, unlucky group, that's it.
There was that one time a cop bruised the back of my arms as he was leading me out of a bar in Malden immediately after a fight started that I happened to be in.
There was the time in town where this older bitch kept bumping into me getting on and off the dance floor, trying to trip my friends and me. Some guy grabbed me and spun me around away from them when she had her hand on my neck as I was yelling, "Listen Grandma! I'll fucking hospitalize you!"
Then there was the time up in Laconia after the bars closed and a bouncer was getting to leave on his Harley, but was standing behind me giving me a hard time. I started to walk towards his bike asking him, "Do you want me to kick your bike to the ground? Cuz I have no problem doing that!" A 6' something 200+lb guy grabbed me to stop me. I told him, "I'll LET you hold me here, but please don't think I'm afraid of you. I've picked up guys bigger than you using just my knee!"
Those were all years ago. More recently? When Jim's ex called him about a year and half ago telling him she made a mistake and wanted another chance? I told him, "She better hope that I never meet her. If I do see her, I'm going to jail. Where she ends up depends on how long it takes people to stop me from beating her. She either be in the hospital or the morgue. Either way, I'll be in jail." And after asking one of my friends, I had my one phone call for bail already lined up.
Yes, I have a temper. Over the years I have learned, for the most part, to control it. Once in a while, when I'm at my breaking point, tired, stressed, overwhelmed... it starts to pop out again. Kickboxing was great for that. I could beat the shit out of the bag. Get all of my frustration and aggression out on it.
Jim knows how on edge I am right now. He knows how sensitive I am to losing my hair, how I feel about the port and how I feel about being ambushed last time. He knows how easily I will be pushed to my breaking point this time. I don't think he'd be all that surprised if I lost it at chemo tomorrow.
He originally wasn't going with me to anymore chemo treatments but was only my backup. Unfortunately my chemo bud for this week had some news that will keep her from going with me tomorrow. Luckily Jim can take me. And it might be a good thing that he's there for this one, even though he wasn't going to be.
He can help keep me from snapping. He'll help me deal with losing my hair and keep from telling off the nurses. Someone is going to be the one who has to deal with me this week. Someone will be the one who is on the receiving end of me. I will end up taking it all out on some unsuspecting person.
This is going to be a bad week for me. This is the one week I didn't want to happen. This is the week I wanted to avoid. But I can't. And it sucks.
Monday, February 25, 2013
Friday, February 15, 2013
3 Days Post Chemo
I guess so far so good. I haven't gotten sick at all this week from chemo, just a little nauseous here and there. But the meds they have given me are doing their jobs I guess.
The biggest side effect at this point is the absolute exhaustion. I'm so damn tired! ALL the time.
Yesterday morning I had an appointment at 7:30 which was a long appointment. We stopped at the store on the way home and got back around 10:30. By 11:30 I was asleep on the sofa. Out cold. That was nap 1 of the day. Then there was another and I was still in bed last night at 8:30!
Today I got up with Jim around 6:30, so a nice 10 hours of sleep. Its close to 11 now and I'm starting to crash again. I tried to do a few things when I had some energy. Folded some laundry and put it away, cleaned out a big bag of paperwork, organized a few things on the table I have set up next to the recliner I seem to live on. But now? Ready to nap again.
Wednesday was the same way. I wasn't sure how I'd be the day after chemo so I asked my friend Michelle to hang out with me for the day. She was here around 8am and I was doing great all morning. I was starting to get tired late morning but showered and we left the house around 1 to head over to Dana Farber. I was supposed to meet with my social worker but she said she forgot about a meeting.
At 2:30 I had my shot which is supposed to boost my immunity after the chemo treatment basically knocks it all down. But they had a surprise for me and not a good one.
I still don't want a port. I was ambushed by the chemo nurse and the social worker before they gave me the shot. They double teamed me about getting a port, about the benefits of it and why they recommend it. I still don't want it and was in tears as they kept going on and on and on about it.
It just felt like I was being attacked. And that sucked. Thank GOD Michelle was right there with me. She jumped in and asked about side effects, the risk of infections (she knew someone who needed it done a couple of times because it kept getting infected).
So I'm not happy about it and I'm not thrilled about heading back for chemo again. I know I'll be teamed up on next time I'm there too and I just don't want to deal with it.
But, for my next chemo treatment, its Crazy Cousin Judy! (LOVE YOU JUDE!) And I know if anyone starts anything or gets on my case too much, she'll be right there and all over it. At the same time, I'm sure she'll put me in my place if I need it too. Which I could... especially after my initial 5 year old reaction on Tuesday.
Otherwise, things are low-key and settling down. Just getting through each day, day by day. All I can do.
I've been trying to prepare for how low my blood counts will be. They told me that days 7-10 will be the worst. That'll be next Wednesday to next Saturday. That will be when I'm most at risk for picking up any infections plus I'll be really run down then as well. I can't imagine being more tired and run down than I already feel now!
I have sanitizer on a table in the stairwell, I cleaned a lot last weekend.
OH!! The Ellie Fund. WOW! What an amazing organization. Please consider giving ANY support to them. Yesterday they dropped off food for me, which I got to pick out. A total of 8 meals, each with 2-3 servings. They are doing it again in March. Last night I ate some of the Veggie Lasagna (half a serving, but it was all I could manage to eat last night).
Another thing the Ellie Fund is doing is house cleaning! Four visits, 3 hours each. They were supposed to come today but with last weekends storm, they were a little behind and are now going to come tomorrow. If someone could really do a GOOD cleaning in the kitchen and bathroom, plus the floor in the living room that would be amazing.
With Jim missing work taking me around, being busy at work... he's working SO much at home. Last night when I was in bed at 8:30, he was working until after 10:30 last night. He spends hours at night and on weekends trying to catch up on what he misses with me during the week. Cleaning that much just gets pushed back a bit. And I completely understand that. There is only so much he can do and he's already doing SO much.
SO between the cleaning and the extra food in the house, what an amazing help!
And another side effect I forgot was the eating. NO appetite. None. I'm basically forcing myself to get food down. I know I need fluids to flush the chemo through my system. I've been trying to focus on sports drinks since I'm not getting too much in food. And then I have my Atkin's Protein shakes. Those don't have soy in them and they are pre-made and taste really good. 15 grams of protein in only 11 ounces. Nice and easy.
But food? URGH! SO trying to eat what I can and do what I can.
So that's it for now.
The biggest side effect at this point is the absolute exhaustion. I'm so damn tired! ALL the time.
Yesterday morning I had an appointment at 7:30 which was a long appointment. We stopped at the store on the way home and got back around 10:30. By 11:30 I was asleep on the sofa. Out cold. That was nap 1 of the day. Then there was another and I was still in bed last night at 8:30!
Today I got up with Jim around 6:30, so a nice 10 hours of sleep. Its close to 11 now and I'm starting to crash again. I tried to do a few things when I had some energy. Folded some laundry and put it away, cleaned out a big bag of paperwork, organized a few things on the table I have set up next to the recliner I seem to live on. But now? Ready to nap again.
Wednesday was the same way. I wasn't sure how I'd be the day after chemo so I asked my friend Michelle to hang out with me for the day. She was here around 8am and I was doing great all morning. I was starting to get tired late morning but showered and we left the house around 1 to head over to Dana Farber. I was supposed to meet with my social worker but she said she forgot about a meeting.
At 2:30 I had my shot which is supposed to boost my immunity after the chemo treatment basically knocks it all down. But they had a surprise for me and not a good one.
I still don't want a port. I was ambushed by the chemo nurse and the social worker before they gave me the shot. They double teamed me about getting a port, about the benefits of it and why they recommend it. I still don't want it and was in tears as they kept going on and on and on about it.
It just felt like I was being attacked. And that sucked. Thank GOD Michelle was right there with me. She jumped in and asked about side effects, the risk of infections (she knew someone who needed it done a couple of times because it kept getting infected).
So I'm not happy about it and I'm not thrilled about heading back for chemo again. I know I'll be teamed up on next time I'm there too and I just don't want to deal with it.
But, for my next chemo treatment, its Crazy Cousin Judy! (LOVE YOU JUDE!) And I know if anyone starts anything or gets on my case too much, she'll be right there and all over it. At the same time, I'm sure she'll put me in my place if I need it too. Which I could... especially after my initial 5 year old reaction on Tuesday.
Otherwise, things are low-key and settling down. Just getting through each day, day by day. All I can do.
I've been trying to prepare for how low my blood counts will be. They told me that days 7-10 will be the worst. That'll be next Wednesday to next Saturday. That will be when I'm most at risk for picking up any infections plus I'll be really run down then as well. I can't imagine being more tired and run down than I already feel now!
I have sanitizer on a table in the stairwell, I cleaned a lot last weekend.
OH!! The Ellie Fund. WOW! What an amazing organization. Please consider giving ANY support to them. Yesterday they dropped off food for me, which I got to pick out. A total of 8 meals, each with 2-3 servings. They are doing it again in March. Last night I ate some of the Veggie Lasagna (half a serving, but it was all I could manage to eat last night).
Another thing the Ellie Fund is doing is house cleaning! Four visits, 3 hours each. They were supposed to come today but with last weekends storm, they were a little behind and are now going to come tomorrow. If someone could really do a GOOD cleaning in the kitchen and bathroom, plus the floor in the living room that would be amazing.
With Jim missing work taking me around, being busy at work... he's working SO much at home. Last night when I was in bed at 8:30, he was working until after 10:30 last night. He spends hours at night and on weekends trying to catch up on what he misses with me during the week. Cleaning that much just gets pushed back a bit. And I completely understand that. There is only so much he can do and he's already doing SO much.
SO between the cleaning and the extra food in the house, what an amazing help!
And another side effect I forgot was the eating. NO appetite. None. I'm basically forcing myself to get food down. I know I need fluids to flush the chemo through my system. I've been trying to focus on sports drinks since I'm not getting too much in food. And then I have my Atkin's Protein shakes. Those don't have soy in them and they are pre-made and taste really good. 15 grams of protein in only 11 ounces. Nice and easy.
But food? URGH! SO trying to eat what I can and do what I can.
So that's it for now.
Tuesday, February 12, 2013
Day 1 done.
Way too freaking tired to write much. I can barely hold my head up. Thank God for the recliner.
We got a new and better thermometer. I felt like I was warm. I was 98.1 and that was an hour ago. Just did it again cuz I really feel warm 97.6. Um, okay. Lost half a degree in an hour and to me I feel warmer? I'm sweating! Laying on the sofa!
And just freakin EXHAUSTED. Completely drained. I ate some pretzels in case I started to get any nausea and I have the meds I need to start tonight.
Other than the IV needing to be done THREE FUCKING TIMES, today went okay. I just don't do well with needles! :(
And this nurse, who did all 3 IV pokes, said she thinks I should have a port. I don't want a port. I don't want it and I really do not want to do it. To the point, I think I would refuse to have it done. The insert it under the skin in a day surgery, then blood draws and all chemo treatments are done through that. No more needles.
Why don't I want a port?
One, since September 27th I have been under anesthesia 4 times. I will need another surgery late summer, early fall to swap out the expanders for the implants. That's another one, making it FIVE TIMES IN A YEAR! Anesthesia isn't wonderful to have that much and has risks. Do I really want to CHOOSE to have 7 in a year instead of 5? Um, NO!
Second reason?
The nurse said its only a 2 inch scar on the top of your chest. Kind of along where a wife beater tank top is. Its only a 2 inch scar. Okay... do I want to add a 2 inch scar to the two 4 inch scars I already have? Um, NO!
Third reason?
I HATE needles, and anything medical. I freaked out with the nurses cleaning my original incisions. Right now I have something similar as a port in each expander. That's what the plastic surgeon puts the syringe into when I have the saline added to fill and expand the tissue. I can't put any pressure against them now and both are a little bruised already. I can feel them under my skin and they freak me out.
Forth reason? When I go for chemo, the find a vein and inject everything through that. Then when I'm done, they take it out and I go home. I'm not taking that part with me. If I have a port, I'll have it with ALL the time until after I'm done. Looking down, another reminder of everything I'm going through.
Another reminder, another thing to freak me out, another scar, and 2 more surgeries?
HELL FUCKING NO! ALL SET. She can find a damn vein somewhere. 2 other nurses said how great my veins were. And this one disagrees. Why don't I get another nurse who can put the IV in better. I said wait and see but I am very against doing it and I really really do NOT want to do it.
And not only do I really really do NOT want to do it....
With everything going on that is taking complete control from me over everything in my life... I'm keeping the control on this. They need my consent for this. I'm not going to give it. I'm not doing it. I WILL flat out refuse. Too much. NOT doing it. EVER. Period. End of fucking story on the port!
Otherwise, on a slightly better note... today was okay. Christine popped by from the hospital next door on her break to say hi. Jim of course was amazing with me all day, giving me his hand each time I needed a new needle and when the IV was taken out each time too. (for my Popsical Posse, this may pose an issue for those who are not super strong cuz nurses who have stepped in have said I have a very strong grip! Just a warning. That's my biggest fear! I squeeze hard!)
The only side effect I have had so far is the exhaustion. Then a slight belly ache. Nothing too bad there. But I'm not really moving much.
The setup of the place is good. The nurses in general are great. My main nurse, Ashley is wonderful and SO sweet (she's not the one who did the IV 3 times!). I'll have Ashley each time too.
They have a fridge full of stuff from soda, water, milk, juice, yogurt and in the freezer Popsicles and ice cream. They have coffee, snacks, muffins, bagels, and at lunch they bring up sandwiches. All for patients and families. Each "room" has the main recliner which I was in, Jim was in a funky padded rocker, then one more chair. We had a table on wheels, a mounted flat screen TV and free Wi-Fi.
I still brought quite a bit to stay comfy today. Jen's blanket, a hoodie (didn't need it), my notebook, magazine, calendar, laptop, chargers for that and my phone. Plus, we brought a cooler. My powerades, protein shakes, other snacks, Jim's yogurt and I'm not sure what else! We were good to go!
Here's a pic of me towards the end of the day... after the anxiety meds were kicked in full force. I swear I look high in the picture! But all snuggled under Jen's blanket! About to drink another protein drink.
Good thoughts until the next treatment.
Okay... how high was I at the hospital??? I just went to add the picture of me from there and it was already loaded here. Hmm... So I read the actual blog. Had to start reading it to remember that I did actually write today while I was there! Damn!!!
Yup, I was high!!
We got a new and better thermometer. I felt like I was warm. I was 98.1 and that was an hour ago. Just did it again cuz I really feel warm 97.6. Um, okay. Lost half a degree in an hour and to me I feel warmer? I'm sweating! Laying on the sofa!
And just freakin EXHAUSTED. Completely drained. I ate some pretzels in case I started to get any nausea and I have the meds I need to start tonight.
Other than the IV needing to be done THREE FUCKING TIMES, today went okay. I just don't do well with needles! :(
And this nurse, who did all 3 IV pokes, said she thinks I should have a port. I don't want a port. I don't want it and I really do not want to do it. To the point, I think I would refuse to have it done. The insert it under the skin in a day surgery, then blood draws and all chemo treatments are done through that. No more needles.
Why don't I want a port?
One, since September 27th I have been under anesthesia 4 times. I will need another surgery late summer, early fall to swap out the expanders for the implants. That's another one, making it FIVE TIMES IN A YEAR! Anesthesia isn't wonderful to have that much and has risks. Do I really want to CHOOSE to have 7 in a year instead of 5? Um, NO!
Second reason?
The nurse said its only a 2 inch scar on the top of your chest. Kind of along where a wife beater tank top is. Its only a 2 inch scar. Okay... do I want to add a 2 inch scar to the two 4 inch scars I already have? Um, NO!
Third reason?
I HATE needles, and anything medical. I freaked out with the nurses cleaning my original incisions. Right now I have something similar as a port in each expander. That's what the plastic surgeon puts the syringe into when I have the saline added to fill and expand the tissue. I can't put any pressure against them now and both are a little bruised already. I can feel them under my skin and they freak me out.
Forth reason? When I go for chemo, the find a vein and inject everything through that. Then when I'm done, they take it out and I go home. I'm not taking that part with me. If I have a port, I'll have it with ALL the time until after I'm done. Looking down, another reminder of everything I'm going through.
Another reminder, another thing to freak me out, another scar, and 2 more surgeries?
HELL FUCKING NO! ALL SET. She can find a damn vein somewhere. 2 other nurses said how great my veins were. And this one disagrees. Why don't I get another nurse who can put the IV in better. I said wait and see but I am very against doing it and I really really do NOT want to do it.
And not only do I really really do NOT want to do it....
With everything going on that is taking complete control from me over everything in my life... I'm keeping the control on this. They need my consent for this. I'm not going to give it. I'm not doing it. I WILL flat out refuse. Too much. NOT doing it. EVER. Period. End of fucking story on the port!
Otherwise, on a slightly better note... today was okay. Christine popped by from the hospital next door on her break to say hi. Jim of course was amazing with me all day, giving me his hand each time I needed a new needle and when the IV was taken out each time too. (for my Popsical Posse, this may pose an issue for those who are not super strong cuz nurses who have stepped in have said I have a very strong grip! Just a warning. That's my biggest fear! I squeeze hard!)
The only side effect I have had so far is the exhaustion. Then a slight belly ache. Nothing too bad there. But I'm not really moving much.
The setup of the place is good. The nurses in general are great. My main nurse, Ashley is wonderful and SO sweet (she's not the one who did the IV 3 times!). I'll have Ashley each time too.
They have a fridge full of stuff from soda, water, milk, juice, yogurt and in the freezer Popsicles and ice cream. They have coffee, snacks, muffins, bagels, and at lunch they bring up sandwiches. All for patients and families. Each "room" has the main recliner which I was in, Jim was in a funky padded rocker, then one more chair. We had a table on wheels, a mounted flat screen TV and free Wi-Fi.
I still brought quite a bit to stay comfy today. Jen's blanket, a hoodie (didn't need it), my notebook, magazine, calendar, laptop, chargers for that and my phone. Plus, we brought a cooler. My powerades, protein shakes, other snacks, Jim's yogurt and I'm not sure what else! We were good to go!
Here's a pic of me towards the end of the day... after the anxiety meds were kicked in full force. I swear I look high in the picture! But all snuggled under Jen's blanket! About to drink another protein drink.
Good thoughts until the next treatment.
Okay... how high was I at the hospital??? I just went to add the picture of me from there and it was already loaded here. Hmm... So I read the actual blog. Had to start reading it to remember that I did actually write today while I was there! Damn!!!
Yup, I was high!!
Chemo, Day 1
Today has been a pretty busy long so far. I was slow moving this morning. Maybe by procrastinating, I was letting myself not have time to think about everything. Then it was hurry up and rush to get ready and leave.
We got here right around 9am. First they took my vital, then I headed to the infusion room, #13. Hmmm... Wonder if I can request a number next time. I like #9!
One of the nurses put in my IV and drew my blood. They needed to test my levels to see where I am starting at. (her IV thing took 2 attempts then). From there, we moved to across the hall to an exam room where we waiting for the Medical Oncologist. Dr. Manera is excellent. I really like her. And I also got to meet the nurse practitioner, Amy, who is great. She just transfered to this location from Boston.
I had my normal list of questions, ranging from foods to avoid, things to avoid and things which could impact Jim. Without getting too personal.... (not that this whole blog isn't but still), when the chemo is put into my system, it is in my entire system and all of my bodily fluids. ALL bodily fluids. So, basically, Jim needs to go shopping for condoms to protect himself from me.
We headed back and they started the IV with fluids only. Then one of the prep drugs was put in, plus the 5 other pills I had to take for anti-nausea meds. SO far so good.
I had a slight break, stopped to hit the bathroom with a large coffee and a 20 ounce bottle of powerade. And I grabbed a sandwich from the fridge. Luckily I was almost done when my friend Christine popped over from the main hospital next door that she works at. I kicked the wheeled table getting up and sent everything, including my sandwich remains, FLYING! Ooops. Like Jim says, can't take me anywhere!!
That reminds me of kindergarten. For those HS friends who read... I had a very specific nickname from only one person. Literally for the entire time I was in school. I can't remember if we were in kindergarten or first grade for her October birthday. Whichever year it was, we were all sitting downstairs playing games for her birthday. One was "Wonderball". Remember that one? With the song?
The wonderball, goes round and round.... Hmm.. Okay, Tried for a few and I can't remember too many words to it! LOL!
Well, we were passing the ball round and round like the song. When it came to me, the ball slipped right out of my hands and ended up in the middle of the circle. Birthday Girl yelled, "BUTTERFINGERS!"
About 12 years later, she said, "Happy Graduation Butterfingers!" It stuck! :) I guess things never really change huh?
Anyway... after Christine left, they needed to fix the IV again. It was in but with that med, she needed it to do something it wasn't doing. SO, they were going to have to take it out and poke me a 3rd time!! URGH!
They ordered some anti-anxiety meds for me at that point. Since the IV was in, they waited for the meds, put them in through that one before putting in a new IV line... give me a chance to chill out before poking me for the 3rd time.
YUP!! Drugs are working! I could sleep right now! WOW... Chilled out. Laying back in my own little recliner. Phone next to me. Laptop on and typing away. It was chilly so I put on my scarf and grabbed the blanket that Jen had made for me. All snuggled up.
I had Jim take a picture of me. Too bad I look like I'm HIGH!!! Oh well.
See, all snuggled. Now I have a few more things on the shelf behind me. Jim moved the table over for my protein shake that I was holding, along with a few other things. Jim has his own recliner on the other corner.
We brought WAY too much with us, but that's how I roll! :) A big bag (thanks Jen!) for the blanket (again Thanks Jen!) and a hoodie, which I haven't needed. My sweater I took off the second I was here, with my jacket. Jim's jacket. A cooler with the 3 powerades, 2 protein shakes, my yogurt, Jim's yogurt, then the other snacks that just fit in that better. We have a laptop back for my laptop and his iPad. And my small drawstring backpack for a magazine, notebook calendar and other small things.
Yup, packed too much. But we have been here for pushing 6 hours already! LONG day!
So far so good. Feeling okay. I'm listening and trying to get down as much fluid as I can to push this crap through me. Two 20 ounce powerades, an 11 ounce protein shake, and I'm working on the 16 ounce Cafe Mocha from Starbucks in here. Then I'll start back on the last of the 20 ounce powerade bottles.
For someone who doesn't like to pee in public places... I've been 3 times since we have been here! WOW! Guess the between the IV fluids and all I've been drinking, its working.
Plus, I'm really really trying to get in good protein and lots of it. No soy based protein for me, so it makes it a little harder. But the Protein shake had 15 grams. Breakfast (eggs with cheese and 1/2 a Greek yogurt) was about 28. Egg salad sandwich for lunch, about 12. So I'm at 55 for the day before 3pm. My daily goal is 77 grams. NOT EASY! Oh well. Figure for today it is even more important to get it in plus all the fluids. Do what I have to do, ya know?
Otherwise, that's it. Only cried once here... after Christine left when they were going to have to put in the IV for the 3rd time and were trying to talk me into getting a port, which I do NOT want to have. Surgery to get it in and out, and it is there the entire time. I have already been under anesthesia 4 times in under 5 months. I'm having another surgery in the fall. I don't need to add in 2 more! That's just insane. So I'll avoid it if I can.
Another reason... I hate needles. You'd think this would be a reason to HAVE the port... something that stays in and I don't need pokes after that while its there. NOPE. It is a constant reminder and ALWAYS there.
Last reason... its another f'ing scar! I already have 2 scars that are 4 inches long on my chest. Just above my chest, why would I want to add in another one that is 2 inches? No f*cking thank you! ALL SET!
That's what was about to set me off and that's when I asked for the anxiety meds.
We will see what happens and how this whole thing goes. The meds for the prep along with the anxiety meds have me crashing hard. Hard to keep my eyes open (which is why I look high in the picture! Pretty much am!) Day one starting to come to a close. No side effects while I'm here but who knows what is to follow. Crossing my fingers!
We got here right around 9am. First they took my vital, then I headed to the infusion room, #13. Hmmm... Wonder if I can request a number next time. I like #9!
One of the nurses put in my IV and drew my blood. They needed to test my levels to see where I am starting at. (her IV thing took 2 attempts then). From there, we moved to across the hall to an exam room where we waiting for the Medical Oncologist. Dr. Manera is excellent. I really like her. And I also got to meet the nurse practitioner, Amy, who is great. She just transfered to this location from Boston.
I had my normal list of questions, ranging from foods to avoid, things to avoid and things which could impact Jim. Without getting too personal.... (not that this whole blog isn't but still), when the chemo is put into my system, it is in my entire system and all of my bodily fluids. ALL bodily fluids. So, basically, Jim needs to go shopping for condoms to protect himself from me.
We headed back and they started the IV with fluids only. Then one of the prep drugs was put in, plus the 5 other pills I had to take for anti-nausea meds. SO far so good.
I had a slight break, stopped to hit the bathroom with a large coffee and a 20 ounce bottle of powerade. And I grabbed a sandwich from the fridge. Luckily I was almost done when my friend Christine popped over from the main hospital next door that she works at. I kicked the wheeled table getting up and sent everything, including my sandwich remains, FLYING! Ooops. Like Jim says, can't take me anywhere!!
That reminds me of kindergarten. For those HS friends who read... I had a very specific nickname from only one person. Literally for the entire time I was in school. I can't remember if we were in kindergarten or first grade for her October birthday. Whichever year it was, we were all sitting downstairs playing games for her birthday. One was "Wonderball". Remember that one? With the song?
The wonderball, goes round and round.... Hmm.. Okay, Tried for a few and I can't remember too many words to it! LOL!
Well, we were passing the ball round and round like the song. When it came to me, the ball slipped right out of my hands and ended up in the middle of the circle. Birthday Girl yelled, "BUTTERFINGERS!"
About 12 years later, she said, "Happy Graduation Butterfingers!" It stuck! :) I guess things never really change huh?
Anyway... after Christine left, they needed to fix the IV again. It was in but with that med, she needed it to do something it wasn't doing. SO, they were going to have to take it out and poke me a 3rd time!! URGH!
They ordered some anti-anxiety meds for me at that point. Since the IV was in, they waited for the meds, put them in through that one before putting in a new IV line... give me a chance to chill out before poking me for the 3rd time.
YUP!! Drugs are working! I could sleep right now! WOW... Chilled out. Laying back in my own little recliner. Phone next to me. Laptop on and typing away. It was chilly so I put on my scarf and grabbed the blanket that Jen had made for me. All snuggled up.
I had Jim take a picture of me. Too bad I look like I'm HIGH!!! Oh well.
See, all snuggled. Now I have a few more things on the shelf behind me. Jim moved the table over for my protein shake that I was holding, along with a few other things. Jim has his own recliner on the other corner.
We brought WAY too much with us, but that's how I roll! :) A big bag (thanks Jen!) for the blanket (again Thanks Jen!) and a hoodie, which I haven't needed. My sweater I took off the second I was here, with my jacket. Jim's jacket. A cooler with the 3 powerades, 2 protein shakes, my yogurt, Jim's yogurt, then the other snacks that just fit in that better. We have a laptop back for my laptop and his iPad. And my small drawstring backpack for a magazine, notebook calendar and other small things.
Yup, packed too much. But we have been here for pushing 6 hours already! LONG day!
So far so good. Feeling okay. I'm listening and trying to get down as much fluid as I can to push this crap through me. Two 20 ounce powerades, an 11 ounce protein shake, and I'm working on the 16 ounce Cafe Mocha from Starbucks in here. Then I'll start back on the last of the 20 ounce powerade bottles.
For someone who doesn't like to pee in public places... I've been 3 times since we have been here! WOW! Guess the between the IV fluids and all I've been drinking, its working.
Plus, I'm really really trying to get in good protein and lots of it. No soy based protein for me, so it makes it a little harder. But the Protein shake had 15 grams. Breakfast (eggs with cheese and 1/2 a Greek yogurt) was about 28. Egg salad sandwich for lunch, about 12. So I'm at 55 for the day before 3pm. My daily goal is 77 grams. NOT EASY! Oh well. Figure for today it is even more important to get it in plus all the fluids. Do what I have to do, ya know?
Otherwise, that's it. Only cried once here... after Christine left when they were going to have to put in the IV for the 3rd time and were trying to talk me into getting a port, which I do NOT want to have. Surgery to get it in and out, and it is there the entire time. I have already been under anesthesia 4 times in under 5 months. I'm having another surgery in the fall. I don't need to add in 2 more! That's just insane. So I'll avoid it if I can.
Another reason... I hate needles. You'd think this would be a reason to HAVE the port... something that stays in and I don't need pokes after that while its there. NOPE. It is a constant reminder and ALWAYS there.
Last reason... its another f'ing scar! I already have 2 scars that are 4 inches long on my chest. Just above my chest, why would I want to add in another one that is 2 inches? No f*cking thank you! ALL SET!
That's what was about to set me off and that's when I asked for the anxiety meds.
We will see what happens and how this whole thing goes. The meds for the prep along with the anxiety meds have me crashing hard. Hard to keep my eyes open (which is why I look high in the picture! Pretty much am!) Day one starting to come to a close. No side effects while I'm here but who knows what is to follow. Crossing my fingers!
Sunday, February 10, 2013
Two Days
So far so good. This weekend, being snowed in, has gone okay.
Friday morning we went to my follow up appointment with the plastic surgeon for a "fill". I'm pretty sure I'm bigger now than I was pre-surgery, but I still have a little swelling so its hard to tell. The day of the fill and for a few days I'm a little sore. The muscles and skin are pulled with another 60cc's of saline added to each side. (last time was 50cc's but I'm not sure how much was originally put in at surgery.)
I did have a slight meltdown on Friday in the middle of the day after we were home but after I talked to Jim, I think he understood where I was at. We hung out for HOURS after that. The satellite went out and we switched the flat screen over to the computer. I am not even sure how many episodes of "Catfishing" we watched in a row. It was just really nice to lay on the sofa and hang out with him all day. We haven't done that in a REALLY long time and it was nice.
Seems like we did that again yesterday. We couldn't open the front screen door because of the snow drifts up against it. Jim started shoveling out the back door with Rocco following him and he made a path up to the front of the house. Then he did part of the sidewalk in front of our house, up towards the driveway. I went outside around then, cleaned off my car and kicked the snow out from under the tires.
Rocco was having a BLAST playing in the snow, running all over the yard. It was so funny when I'd toss a snowball towards him and it ended up in a snowbank. He couldn't figure out where it went! :)
Jim went out again last night to finish up the sidewalk and then the edge of the driveway too. This morning he was PISSED that the plow pushed in everything he did on the sidewalk and blocked about 2 feet wide at the edge of the driveway! My car is not going anywhere right now. Oh well.
Last night we were hanging out again on the sofa. We just made mac and cheese for dinner and had on reality TV for a while.... Flipping Vegas & Hording. WOW! But Flipping Vegas was fun. It was just nice again to lay there and be lazy, just hanging out relaxing at home with Jim. I needed that.
He kept my mind off of things and kept me occupied so I wasn't thinking about things. About this week. About Tuesday. Jim's working now, since he didn't on Friday or Saturday and has been for a few hours. I've been trying to keep my mind off of things, but it isn't easy. The bathroom is cleaned. Laundry is half done. A small table is on the landing with hand sanitizer. The plastic recycling is downstairs in the bin. I can't really do a whole lot more of the cleaning myself. Hard to move around still. (shouldn't really have done the laundry either, but I knew it needed to get done).
Now I'm done. Now I can't distract myself anymore.
I'm trying to break things down into smaller pieces. First is Tuesday. My blanket from Jen is in the laundry now and I'm bringing that with me, along with a couple of bottles of my Powerade and maybe a few snacks I like. And I think I'm going to bring my laptop too. I'll need a few things to occupy my time while I'm there. Plus my protein shakes, Greek yogurt, Jim's yogurt and his lunch too.
Right now, just thinking of what I'm bringing and what I need to do that day. I still need to go to CVS and pick up the prescriptions from my doctor to have when I get home from chemo. That's on today's to do list. Then I need to start getting my chemo day bag ready to go too.
On Tuesday, we have to be there for 9am. I'll meet with a nurse to do my blood and the nurse can put in my IV at the same time so I'll only (HOPEFULLY!) have to be poked once. They will run all of my blood work and then I'll meet with my medical oncologist after she reviews the results. That will allow them to know what amounts of everything they will need to give me.
Then I'll head over for chemo. First I will get all the prep drugs, like anti-nausea and things like that, just to get my body better able to handle the strong drugs I'll be getting. When that is done, they will start with Adriamycin and the nurse will sit with me during that one as it gets pushed through. That should take about 15 minutes.
Next they will hook up the Cytoxan which is slower. That will take a couple of hours to go in through the IV. I was told that they will go slow with everything to see how my body reacts to it all, since this is the first treatment. But I have to let the nurses know as SOON as I start feeling sick. Its easier to manage the earlier you start to manage it.
During chemo and that night, DRINK FLUIDS. I need to flush my system as much as I can and push the chemo through me. The more I can drink the better... which is why I'm bringing my powerade with me to chemo. I typically go through 2 to 3 of the 32 ounce bottles a day, pushing to be closer to 3. I'm just trying to prep myself for it.
Another way I've been prepping is by eating extra protein now. Because I am estrogen positive, I can't eat any soy. Soy is recognized in the body as estrogen. Protein bars are typically made from soy based protein. I CAN eat whey protein, like the whey powder in shakes. My Atkin's protein shakes which taste like chocolate milk are from whey protein, so that's pretty easy. Plus, those are 15 grams of protein.
Protein will help me during chemo. The nutritionist told me to aim for 77 grams of protein per day! That's a lot of friggin protein. But the Atkins shakes are 15 grams and the Greek yogurt I eat is 14 grams of protein (regular yogurt is about 6 grams). My morning snake today was an Atkins shake with a Greek yogurt... nice and easy 29 grams right there.
After quickly checking the Dunkin website, my large hot Dark Chocolate Mocha Latte with Skim Milk, granted it has 360 calories, but its another 14 grams of protein. So 43 with a yogurt and 2 drinks? Not too bad.
It was originally hard to figure it all out, but now I wing it. 3 ounces of chicken, which is about the size of a deck of cards, is 27 grams. I'm not really supposed to have steak or processed meats like sausages. But cheese is good, which is great, cuz I love cheese! The easier the better to get it in.
Otherwise... that's all I can do right now. Prepare for what I have to bring with me on Tuesday and know what to expect from that day. I have no idea how I'm going to feel, if I will have side effects (most likely), when they will start, how strong they will be, and how long they will last. It varies person to person. That's the hard part!
My goal is to write it all down. Keep a log of how I'm feeling and when, so I know what to expect next time. If I feel like crap or get sick, I'll know when that will be expected to start.
I can't do anything else other than that right now. I'm doing my best to not think about the side effects but to be prepared for them. And I'm trying really really hard to not think about my hair.
That's still HARD.
I was cold last night and pulled out a hoodie I haven't worn in a while. It was one of those, wear for maybe an hour then toss back on the hook until next time you need it. Well I guess it was before New Years the last time I wore it. I found a long blond hair stuck on it. That sucked. I still miss my hair. I really miss having hair.
Weird, cuz I had a dream the other night that I had my hair, my long hair.
I just miss it. It was so much of my identity for so long. So many times when I got my hair cut the stylist told me that I should be a hair model and how beautiful my hair was. I have the ponytail in a bag on a shelf in my closet. I haven't touched it since the day I put it in there. I can't.
I feel so different now. Like I'm a different person. There was the me bc (before cancer) and the me now. Almost like it is two different lives. Bc was so different. My priorities were completely different. If I started to get a little congested, it was an annoyance. Now? It scares the shit out of me!
Bc, I just hated crowds in general. I didn't love the mall and liked going to the movies on Sunday nights instead of Saturday nights because I just don't like crowds. Now? I have to avoid crowds. People who are sick still go to the mall and the movies, crowded or not. They still go out to eat an0d they are still out and about in public. I can't be around sick people anymore. I can't be exposed to that.
Thinking of getting congested, getting a cold or exposed to whatever? It isn't an annoyance that I could easily overcome by just resting, taking it easy and getting extra sleep like bc. Getting a cold now? It could potentially kill me. I'll have a completely compromised immune system. That's just scary.
And Bc... I never friggin thought about this crap! Why would I? Yeah, I was a germ-a-phobe. I hate public bathrooms, and the few times I do go its layers and layers of tp to line the seat I squat over (just in case!) and opening the door is with a paper towel I then toss out as I'm walking out. I HATE touching door handles. I would even pause before taking a pen to sign my name when using plastic! Who knows how many dirty nasty hands have been all over that pen? And that was bc!
Now? I have a table on a landing on the stairs with hand sanitizer. I have small wipes to keep in my purse along with small bottles of sanitizer. I can use them when I'm out anywhere. If I do go to a restaurant, I can wipe down where I'm sitting with the wipes. How sad is that? And that's a big IF, if I ever go out to a restaurant!
I miss my old life bc. I miss being at kickboxing a few times a week, beating the hell out of the bag. I miss being able to do things for myself... like getting the 25 pound box of kitty litter out of the back of my car or even being able to help Jim shovel from the storm. I miss feeling useful and productive and being comfortable with my body.
That's another thing! When you hear someone has cancer... what's the image of that person that comes into your mind? Honestly... think for a second. A person has cancer, what do you? What does that person look like? Male or female? How old? Hair? Overweight or skinny?
I know for me, the image was an older male, maybe 60's, very short thin hair. He's pale, tale and VERY skinny. Pretty much every opposite of me.
But the skinny part? HA HA. Isn't that the stereotype? People lose weight with cancer?
I have gained 10 pounds! TEN POUNDS! Since October! WTF is that? 10 f'ing pounds on someone who is 5'2"? Really? NO THANK YOU!
Not only gaining weight, but I have lost muscle. I haven't worked out since September. I had surgery on my wrist in September and couldn't. Then I started fertility preservation and couldn't even do yoga with that. The last retrieval was on a Friday and my surgery was the following Tuesday! It SUCKS!
So I don't feel like me with my hair. I don't love having short hair and don't feel good about it. I have 3-4 inch scars across each nipple-less breast. I lost all my muscle tone and gained another 10 pounds of fat on top of it. My BIG jeans feel snug. I feel like a blob. I just don't feel good about myself AT ALL! I hate losing confidence in myself. HATE it. It just sucks.
But I'm trying to NOT focus on all of that... SO much easier said than done. I still miss me bc. But I need to just accept that she's gone. I really am a different person now. I have different concerns and priorities now. I think about different things now. My relationships are different now. My whole life is different now.
I guess that's about it. Trying to stay as focused and as positive as I can. Hard but baby steps for me right now is a win. Its all I can do.
OH YEAH!
Hmm... So Friday we did get mail as the storm was starting. I didn't check it until that night and it was pretty covered, but that was okay. I saw a few cards come for me, plus a couple of boxes. One box I started with first. It was most of the wig care accessories that I had ordered, including the wig stand and wig brush.
That got me side tracked for a bit. I tried on all of the wigs I bought, brushed them a bit and showed Jim each for his opinion. (he liked one the best, which is the same one I had already liked the best, so I guess that one is the winner).
It was a while before I got to the cards. The cards I get from everyone just mean SO much to me and I appreciate them all so much. Opening one of these cards was a little different.
I read the front of the card, then opened it. A check fell out. She wrote that she has been reading my blog and how her thoughts are with me. She sent me the check to help, for me to use it towards a co-pay or prescription for what I'm getting before I start chemo.
Jim was standing on the other side of the island in the kitchen, cooking dinner, as I was reading this card. He asked me what was wrong when he saw my eyes fill up with tears. All I could say was, "a check" as I held it up. He wanted to know who it was from.
When I told Jim her name, how I knew her and that I might have seen her once in the past 20 years, all he could say was "Wow".
Even now.... looking at that card, that's all I can say too. Wow.
So now, as I am trying to get ready to start chemo and prepare myself for the next step in this journey, I'm trying to focus on things like this, like this card and this unbelievable touching act of kindness that brought tears to my eyes.
I've always wanted to be the kind of person who could make a difference in the world. I wanted to believe that I was a good person, even when I would say that I was a bitch. I really have always wanted to help people and to just leave my little stamp on the world, doing something that makes a ripple to make it a better place than it would have been without me.
When I see a car accident, if its safe and no one has stopped, I stop (not even sure how many times that has happened, but at least 5 or 6 off the top of my head). I've stopped in the mall more than once when I saw a crying child alone. I've (possibly stupid choice here) jumped in the middle of more than 1 fight, not being able to stop myself. I couldn't live with myself if something happened and all I did was just stand there. I've waited at a bar trying to flag down a busy bartender for giving me $20 too much in change.
I have always wanted to live a life that I could look at myself in the mirror and not be ashamed of who I see looking back. I didn't want to cheat or take advantage of people. I want to earn my keep, work hard for what I have, believe in what I am doing and make a difference somehow.
Maybe that's how I started with being a fitness trainer. I LOVE seeing the couch to 5K runners succeed! I love the look of pride and accomplishment on each person's face when they are able to do something that they didn't think possible. Sometimes I think I get more excited than they do themselves!
As much as this is who I have tried to be, its hard to believe and trust that you really do have people beside, supporting you. It's hard to imagine who would be around, push come to shove.
Think for a moment... if you had something really serious come up in your life (even think cancer if it helps), who would be there? Who would you hear from? Who would show you support?
Would you expect to hear from people you haven't seen or spoken to in 15-20 years? Would you expect to have your fridge and freezer filled with food from friends making you meals? Would you expect to have so many packages and cards delivered that the mailman actually says, "I never had a lot of mail to deliver to this house until you moved here."
The support I have received from places I never could have imagined has been incredible. It has been absolutely overwhelming. The cards, emails, text and facebook messages... just the outpouring of support from everywhere!
I know I'm lucky to have all of this. I know how lucky I am to have so many people around me, cheering for me. That's what I am focusing on and that is what is getting me through this next step.
As much as I have wanted to be a good person and do the right thing in life, I'm still not sure how I am so lucky to have this many people around me, supporting me. It says more about all of you, who all of YOU are than it does about me. For people to just reach out to me like this? That's not about me. That says that YOU are all incredible people for doing this.
YOU are all doing what I wanted to do in my life. YOU are making a difference and causing a ripple. Your support and encouragement and kind words are getting me through this and helping me to focus on the positives. YOU are making a HUGE difference in my life. This speaks volumes about who you are as a person.
And for that, thank you. Thank you for being a wonderful, incredible, positive and supportive person in my life! Thank you!
Maybe it does say something about me. It says that all through the years, whether new or old friends, close by or far away, even if separated by distance, time or life... I know a skill I have had for a very long time.
I know how to recognize good people.
Thank you! And thank you for being part of my journey and helping me get through this.
Friday morning we went to my follow up appointment with the plastic surgeon for a "fill". I'm pretty sure I'm bigger now than I was pre-surgery, but I still have a little swelling so its hard to tell. The day of the fill and for a few days I'm a little sore. The muscles and skin are pulled with another 60cc's of saline added to each side. (last time was 50cc's but I'm not sure how much was originally put in at surgery.)
I did have a slight meltdown on Friday in the middle of the day after we were home but after I talked to Jim, I think he understood where I was at. We hung out for HOURS after that. The satellite went out and we switched the flat screen over to the computer. I am not even sure how many episodes of "Catfishing" we watched in a row. It was just really nice to lay on the sofa and hang out with him all day. We haven't done that in a REALLY long time and it was nice.
Seems like we did that again yesterday. We couldn't open the front screen door because of the snow drifts up against it. Jim started shoveling out the back door with Rocco following him and he made a path up to the front of the house. Then he did part of the sidewalk in front of our house, up towards the driveway. I went outside around then, cleaned off my car and kicked the snow out from under the tires.
Rocco was having a BLAST playing in the snow, running all over the yard. It was so funny when I'd toss a snowball towards him and it ended up in a snowbank. He couldn't figure out where it went! :)
Jim went out again last night to finish up the sidewalk and then the edge of the driveway too. This morning he was PISSED that the plow pushed in everything he did on the sidewalk and blocked about 2 feet wide at the edge of the driveway! My car is not going anywhere right now. Oh well.
Last night we were hanging out again on the sofa. We just made mac and cheese for dinner and had on reality TV for a while.... Flipping Vegas & Hording. WOW! But Flipping Vegas was fun. It was just nice again to lay there and be lazy, just hanging out relaxing at home with Jim. I needed that.
He kept my mind off of things and kept me occupied so I wasn't thinking about things. About this week. About Tuesday. Jim's working now, since he didn't on Friday or Saturday and has been for a few hours. I've been trying to keep my mind off of things, but it isn't easy. The bathroom is cleaned. Laundry is half done. A small table is on the landing with hand sanitizer. The plastic recycling is downstairs in the bin. I can't really do a whole lot more of the cleaning myself. Hard to move around still. (shouldn't really have done the laundry either, but I knew it needed to get done).
Now I'm done. Now I can't distract myself anymore.
I'm trying to break things down into smaller pieces. First is Tuesday. My blanket from Jen is in the laundry now and I'm bringing that with me, along with a couple of bottles of my Powerade and maybe a few snacks I like. And I think I'm going to bring my laptop too. I'll need a few things to occupy my time while I'm there. Plus my protein shakes, Greek yogurt, Jim's yogurt and his lunch too.
Right now, just thinking of what I'm bringing and what I need to do that day. I still need to go to CVS and pick up the prescriptions from my doctor to have when I get home from chemo. That's on today's to do list. Then I need to start getting my chemo day bag ready to go too.
On Tuesday, we have to be there for 9am. I'll meet with a nurse to do my blood and the nurse can put in my IV at the same time so I'll only (HOPEFULLY!) have to be poked once. They will run all of my blood work and then I'll meet with my medical oncologist after she reviews the results. That will allow them to know what amounts of everything they will need to give me.
Then I'll head over for chemo. First I will get all the prep drugs, like anti-nausea and things like that, just to get my body better able to handle the strong drugs I'll be getting. When that is done, they will start with Adriamycin and the nurse will sit with me during that one as it gets pushed through. That should take about 15 minutes.
Next they will hook up the Cytoxan which is slower. That will take a couple of hours to go in through the IV. I was told that they will go slow with everything to see how my body reacts to it all, since this is the first treatment. But I have to let the nurses know as SOON as I start feeling sick. Its easier to manage the earlier you start to manage it.
During chemo and that night, DRINK FLUIDS. I need to flush my system as much as I can and push the chemo through me. The more I can drink the better... which is why I'm bringing my powerade with me to chemo. I typically go through 2 to 3 of the 32 ounce bottles a day, pushing to be closer to 3. I'm just trying to prep myself for it.
Another way I've been prepping is by eating extra protein now. Because I am estrogen positive, I can't eat any soy. Soy is recognized in the body as estrogen. Protein bars are typically made from soy based protein. I CAN eat whey protein, like the whey powder in shakes. My Atkin's protein shakes which taste like chocolate milk are from whey protein, so that's pretty easy. Plus, those are 15 grams of protein.
Protein will help me during chemo. The nutritionist told me to aim for 77 grams of protein per day! That's a lot of friggin protein. But the Atkins shakes are 15 grams and the Greek yogurt I eat is 14 grams of protein (regular yogurt is about 6 grams). My morning snake today was an Atkins shake with a Greek yogurt... nice and easy 29 grams right there.
After quickly checking the Dunkin website, my large hot Dark Chocolate Mocha Latte with Skim Milk, granted it has 360 calories, but its another 14 grams of protein. So 43 with a yogurt and 2 drinks? Not too bad.
It was originally hard to figure it all out, but now I wing it. 3 ounces of chicken, which is about the size of a deck of cards, is 27 grams. I'm not really supposed to have steak or processed meats like sausages. But cheese is good, which is great, cuz I love cheese! The easier the better to get it in.
Otherwise... that's all I can do right now. Prepare for what I have to bring with me on Tuesday and know what to expect from that day. I have no idea how I'm going to feel, if I will have side effects (most likely), when they will start, how strong they will be, and how long they will last. It varies person to person. That's the hard part!
My goal is to write it all down. Keep a log of how I'm feeling and when, so I know what to expect next time. If I feel like crap or get sick, I'll know when that will be expected to start.
I can't do anything else other than that right now. I'm doing my best to not think about the side effects but to be prepared for them. And I'm trying really really hard to not think about my hair.
That's still HARD.
I was cold last night and pulled out a hoodie I haven't worn in a while. It was one of those, wear for maybe an hour then toss back on the hook until next time you need it. Well I guess it was before New Years the last time I wore it. I found a long blond hair stuck on it. That sucked. I still miss my hair. I really miss having hair.
Weird, cuz I had a dream the other night that I had my hair, my long hair.
I just miss it. It was so much of my identity for so long. So many times when I got my hair cut the stylist told me that I should be a hair model and how beautiful my hair was. I have the ponytail in a bag on a shelf in my closet. I haven't touched it since the day I put it in there. I can't.
I feel so different now. Like I'm a different person. There was the me bc (before cancer) and the me now. Almost like it is two different lives. Bc was so different. My priorities were completely different. If I started to get a little congested, it was an annoyance. Now? It scares the shit out of me!
Bc, I just hated crowds in general. I didn't love the mall and liked going to the movies on Sunday nights instead of Saturday nights because I just don't like crowds. Now? I have to avoid crowds. People who are sick still go to the mall and the movies, crowded or not. They still go out to eat an0d they are still out and about in public. I can't be around sick people anymore. I can't be exposed to that.
Thinking of getting congested, getting a cold or exposed to whatever? It isn't an annoyance that I could easily overcome by just resting, taking it easy and getting extra sleep like bc. Getting a cold now? It could potentially kill me. I'll have a completely compromised immune system. That's just scary.
And Bc... I never friggin thought about this crap! Why would I? Yeah, I was a germ-a-phobe. I hate public bathrooms, and the few times I do go its layers and layers of tp to line the seat I squat over (just in case!) and opening the door is with a paper towel I then toss out as I'm walking out. I HATE touching door handles. I would even pause before taking a pen to sign my name when using plastic! Who knows how many dirty nasty hands have been all over that pen? And that was bc!
Now? I have a table on a landing on the stairs with hand sanitizer. I have small wipes to keep in my purse along with small bottles of sanitizer. I can use them when I'm out anywhere. If I do go to a restaurant, I can wipe down where I'm sitting with the wipes. How sad is that? And that's a big IF, if I ever go out to a restaurant!
I miss my old life bc. I miss being at kickboxing a few times a week, beating the hell out of the bag. I miss being able to do things for myself... like getting the 25 pound box of kitty litter out of the back of my car or even being able to help Jim shovel from the storm. I miss feeling useful and productive and being comfortable with my body.
That's another thing! When you hear someone has cancer... what's the image of that person that comes into your mind? Honestly... think for a second. A person has cancer, what do you? What does that person look like? Male or female? How old? Hair? Overweight or skinny?
I know for me, the image was an older male, maybe 60's, very short thin hair. He's pale, tale and VERY skinny. Pretty much every opposite of me.
But the skinny part? HA HA. Isn't that the stereotype? People lose weight with cancer?
I have gained 10 pounds! TEN POUNDS! Since October! WTF is that? 10 f'ing pounds on someone who is 5'2"? Really? NO THANK YOU!
Not only gaining weight, but I have lost muscle. I haven't worked out since September. I had surgery on my wrist in September and couldn't. Then I started fertility preservation and couldn't even do yoga with that. The last retrieval was on a Friday and my surgery was the following Tuesday! It SUCKS!
So I don't feel like me with my hair. I don't love having short hair and don't feel good about it. I have 3-4 inch scars across each nipple-less breast. I lost all my muscle tone and gained another 10 pounds of fat on top of it. My BIG jeans feel snug. I feel like a blob. I just don't feel good about myself AT ALL! I hate losing confidence in myself. HATE it. It just sucks.
But I'm trying to NOT focus on all of that... SO much easier said than done. I still miss me bc. But I need to just accept that she's gone. I really am a different person now. I have different concerns and priorities now. I think about different things now. My relationships are different now. My whole life is different now.
I guess that's about it. Trying to stay as focused and as positive as I can. Hard but baby steps for me right now is a win. Its all I can do.
OH YEAH!
Hmm... So Friday we did get mail as the storm was starting. I didn't check it until that night and it was pretty covered, but that was okay. I saw a few cards come for me, plus a couple of boxes. One box I started with first. It was most of the wig care accessories that I had ordered, including the wig stand and wig brush.
That got me side tracked for a bit. I tried on all of the wigs I bought, brushed them a bit and showed Jim each for his opinion. (he liked one the best, which is the same one I had already liked the best, so I guess that one is the winner).
It was a while before I got to the cards. The cards I get from everyone just mean SO much to me and I appreciate them all so much. Opening one of these cards was a little different.
I read the front of the card, then opened it. A check fell out. She wrote that she has been reading my blog and how her thoughts are with me. She sent me the check to help, for me to use it towards a co-pay or prescription for what I'm getting before I start chemo.
Jim was standing on the other side of the island in the kitchen, cooking dinner, as I was reading this card. He asked me what was wrong when he saw my eyes fill up with tears. All I could say was, "a check" as I held it up. He wanted to know who it was from.
When I told Jim her name, how I knew her and that I might have seen her once in the past 20 years, all he could say was "Wow".
Even now.... looking at that card, that's all I can say too. Wow.
So now, as I am trying to get ready to start chemo and prepare myself for the next step in this journey, I'm trying to focus on things like this, like this card and this unbelievable touching act of kindness that brought tears to my eyes.
I've always wanted to be the kind of person who could make a difference in the world. I wanted to believe that I was a good person, even when I would say that I was a bitch. I really have always wanted to help people and to just leave my little stamp on the world, doing something that makes a ripple to make it a better place than it would have been without me.
When I see a car accident, if its safe and no one has stopped, I stop (not even sure how many times that has happened, but at least 5 or 6 off the top of my head). I've stopped in the mall more than once when I saw a crying child alone. I've (possibly stupid choice here) jumped in the middle of more than 1 fight, not being able to stop myself. I couldn't live with myself if something happened and all I did was just stand there. I've waited at a bar trying to flag down a busy bartender for giving me $20 too much in change.
I have always wanted to live a life that I could look at myself in the mirror and not be ashamed of who I see looking back. I didn't want to cheat or take advantage of people. I want to earn my keep, work hard for what I have, believe in what I am doing and make a difference somehow.
Maybe that's how I started with being a fitness trainer. I LOVE seeing the couch to 5K runners succeed! I love the look of pride and accomplishment on each person's face when they are able to do something that they didn't think possible. Sometimes I think I get more excited than they do themselves!
As much as this is who I have tried to be, its hard to believe and trust that you really do have people beside, supporting you. It's hard to imagine who would be around, push come to shove.
Think for a moment... if you had something really serious come up in your life (even think cancer if it helps), who would be there? Who would you hear from? Who would show you support?
Would you expect to hear from people you haven't seen or spoken to in 15-20 years? Would you expect to have your fridge and freezer filled with food from friends making you meals? Would you expect to have so many packages and cards delivered that the mailman actually says, "I never had a lot of mail to deliver to this house until you moved here."
The support I have received from places I never could have imagined has been incredible. It has been absolutely overwhelming. The cards, emails, text and facebook messages... just the outpouring of support from everywhere!
I know I'm lucky to have all of this. I know how lucky I am to have so many people around me, cheering for me. That's what I am focusing on and that is what is getting me through this next step.
As much as I have wanted to be a good person and do the right thing in life, I'm still not sure how I am so lucky to have this many people around me, supporting me. It says more about all of you, who all of YOU are than it does about me. For people to just reach out to me like this? That's not about me. That says that YOU are all incredible people for doing this.
YOU are all doing what I wanted to do in my life. YOU are making a difference and causing a ripple. Your support and encouragement and kind words are getting me through this and helping me to focus on the positives. YOU are making a HUGE difference in my life. This speaks volumes about who you are as a person.
And for that, thank you. Thank you for being a wonderful, incredible, positive and supportive person in my life! Thank you!
Maybe it does say something about me. It says that all through the years, whether new or old friends, close by or far away, even if separated by distance, time or life... I know a skill I have had for a very long time.
I know how to recognize good people.
Thank you! And thank you for being part of my journey and helping me get through this.
Tuesday, February 5, 2013
Chemo Dates
Jim is taking me to my first chemo treatment on Tuesday next week and I already have a date in March taken too.
SO.. for my "chemo girls" (CG's), below are the dates I will need help with. You would need to drive me from my house to Dana Farber, spend 4-5 hours with me there. My day starts with blood work, then they run the tests on my levels, then I meet with the medical oncologist. Then its off to the infusion room for the chemo treatment for a few hours. (TV, food, drinks, lunch, free wi-fi and hanging with me!). And drive me home. I'm not allowed to drive that day due to some of the meds making me tired.
I know how lucky I am to have SO many friends and family willing to help me out. Thank you SO much.
Because I have so many people willing to help, and people need some advance notice to get the day off of work... the best way to do it might be to message me with the best couple of dates that work for you.
Obviously the one day in February, 3 weeks from today, is most important to me right now. For my wonderful CG's who live north of town and have a longer ride to get to my house, you are more than welcome to come over the night before and spend the night. Just remember we have a dog! Rocco is a 115 lovebug who thinks he's a lapdog.
Anyway... the dates are below. Just message me with a couple of dates you'd be interested in being my CG, in order of preference. I'm lucky I have so many people willing to help that I have to figure out who can do what days. Either an email, comment here, a text, FB message... whatever works!
Thank you for this. For the support, for helping me and being there for me. And for helping Jim, so he doesn't need to take all 8 days off of work, in addition to all the time he's already taken off.
You have NO idea idea how much this means to me.
Thank you!
(dates crossed out are taken, please pick from the open dates. I'll update as specific dates are covered.)
February 12th
February 26th
March 12th
March 26th
April 9th
April 23rd
May 7th
May 21st
SO.. for my "chemo girls" (CG's), below are the dates I will need help with. You would need to drive me from my house to Dana Farber, spend 4-5 hours with me there. My day starts with blood work, then they run the tests on my levels, then I meet with the medical oncologist. Then its off to the infusion room for the chemo treatment for a few hours. (TV, food, drinks, lunch, free wi-fi and hanging with me!). And drive me home. I'm not allowed to drive that day due to some of the meds making me tired.
I know how lucky I am to have SO many friends and family willing to help me out. Thank you SO much.
Because I have so many people willing to help, and people need some advance notice to get the day off of work... the best way to do it might be to message me with the best couple of dates that work for you.
Obviously the one day in February, 3 weeks from today, is most important to me right now. For my wonderful CG's who live north of town and have a longer ride to get to my house, you are more than welcome to come over the night before and spend the night. Just remember we have a dog! Rocco is a 115 lovebug who thinks he's a lapdog.
Anyway... the dates are below. Just message me with a couple of dates you'd be interested in being my CG, in order of preference. I'm lucky I have so many people willing to help that I have to figure out who can do what days. Either an email, comment here, a text, FB message... whatever works!
Thank you for this. For the support, for helping me and being there for me. And for helping Jim, so he doesn't need to take all 8 days off of work, in addition to all the time he's already taken off.
You have NO idea idea how much this means to me.
Thank you!
(dates crossed out are taken, please pick from the open dates. I'll update as specific dates are covered.)
On the Up Side
So far so good this week. When I woke up this morning and rubbed my eyes awake, it wasn't bad. That's when I made the connection... no tears in a few days. When I cry at night, more salt is stuck in my eyes in the morning. No tears in a few days. That's a good thing!
I've gotten so many wonderful and supportive cards in the mail. Some so inspiring and encouraging and some that literally make me laugh out loud (a pickle birthday card Jen?) ;) LOVED it!
Last week I had cleaned off the island in the kitchen, tossing the flowers that were passed and putting the cards into a basket that once had flowers. Then I started fresh with the new flowers having space along with all the new cards. I never thought I'd be ready to clear off the island again this quickly! There is barely any space for anything other than the cards. Maybe its a good thing Jim keeps forgetting to call the furniture store to see if the bar stools we ordered are in. With all the cards, if you sat at the island now, you wouldn't have any space for anything!
I continue to hear from so many people and receive support from so many places I never expected. That is so absolutely amazing. The support I am getting really does make an absolute WORLD of difference for me!
Yesterday was my one day this week that I don't have anything going on. That's kind of nice... a busy week!
Today I'm meeting an old work friend for coffee/snack/early lunch sort of thing before my 1pm appointment at Dana Farber. I'm looking forward to catching up with Brenda who I haven't seen in a while. Always loved working with her. A no BS sort of person and I like that. Nothing fake about her.
After meeting with Brenda, heading down the street to Dana Farber. They offer integrative therapies at insanely cheap prices! A one hour session is $20. Yes, $20! For a massage, Reiki, and whatever else they have. Today is Reiki, which I have never tried before, but I'm basically open to everything. And for $20? Why not try it and see? I'm not ready for a massage at this point in my recovery, but I do have an appointment scheduled for later this month. Again, $20! Can't beat it!
Tomorrow I'm going to the support group at the cancer Support Community. I'm still not sure how I feel about it. There is one other person in the group who is under the age of 50. And a different person is going through her second round of breast cancer but much more advanced. I'm not sure if this is the right group for me.
Hard at my age to find people who I can connect with who understand the issues, fears and struggles I have. Under 40, no kids, cancer. Different issues than 60's, retired, or even younger with kids. Not more challenging either way, just different issues and concerns.
Thursday will be fun. I haven't seen Jen, pickle birthday card Jen in.... hmm... That's a tough one. And a scary one to answer! Well, we met when we were 18 or 19. We worked together and went to school together... bombed our Trig final together (not sure who took longer to finish, but I'm pretty sure we grabbed lunch after and we were both out in under 15 minutes!). But I think we might have last seen each other maybe 15 years ago. And that's a guess. Could be longer, maybe.
Anyway... we are meeting for lunch which will be great to see each other and catch up again. I'm looking forward to it.
Friday I have another follow up appointment with the plastic surgeon. I'll get another "fill" in the expanders. Damn those hurt! With losing feeling from surgery, I can't feel the needles being put through my skin into the valves of the expanders. But once inserted, she pushes in saline.
The expanders are basically balloons, under my chest muscles. They expand the muscles and skin with each "fill", slowly over however long it takes. That part varies person to person. She was able to get in more saline than I expected at my initial surgery, so I looked like I had boobs from day one. The fill I had on Feb 1st brought me back to at least where I was before my mastectomy, if not a little bigger. (not sure considering there is still a little swelling from surgery as well).
I told her I'd be up for going a bit bigger if that's possible. But the skin can only stretch so far, so we'll see. At least I did find other bras I can wear besides the surgical ones I left the hospital with. Those things were HORRIBLE. And I hated the idea of spending a ton of money on an ugly bra I'd only be wearing for a few months.
I now have 6 Hanes ugly ass front closure bras. They look like the tank style sports bras that pull over your head that have very minimal support. No underwire, no cups. Just the squish them down thing that can make a uni-boob. These are slightly V-neck with the five front closure eye hooks, but are still ugly. And I have to wear them 24/7. Keep the expanders pushing where they should be.
Friday she'll check the incisions as well, and make sure I'm healing up alright. I think I am, but she's the one with the medical degree. I am slightly concerned with some pink spots. I don't know if its an issue, healing or the hair dye dripping down on the incision scars. Guess I'll find out in a few days.
I'm also slightly concerned with a fold I have. Thing that armpit boob area when your arms are by your sides... the spot that sticks out of bras sometimes. That spot. Right by there on my left side, I have a fold when my arms are down. I'm pretty sure it will go away with more "fill", but its something else I want to ask about.
So I colored my hair again too. Well, Jim did! He was so good. I bought the dye at Sally's Beauty Supply after a long conversation with someone who worked there. Sunday we mixed it up in a paper bowl. Jim used a comb he was ready to toss to apply to slowly to my hair. I think he took 20 minutes to get it all on, trying not to get any on my scalp so it wouldn't stain me at all. He was so good. Then he helped me rinse it all out too. This time its a little bolder and brighter. But I just need it to last until the 23rd. 18 days until he shaves my head.
And that was funny too! Not sure why I didn't put it together when he was saying things about the dye staining my head. Sunday night when we had the Superbowl on, it finally clicked. Any spots that are on my scalp, will they still be there when he shaves my head? Will I have a purple spotted head? He laughed cuz he had thought of that weeks ago and THOUGHT I had already gotten that point. Nope... a little slow on that part! :) Wouldn't that be funny? A purple spotted head? Not that shaving it won't be traumatic enough! Oh well!
Chemo starts up a week from today. I'm absolutely terrified about it.... well, not completely. I don't want to be sick but more specifically, I don't want to LOOK sick. I know my doctors will give me plenty of meds to manage all of the side effects that I can come up against. I already have 3 prescriptions waiting for me at the pharmacy which would handle the effects for me once I'm home. I know I have to buy Claridin for the bone aches. I'm not so scared about all of that. I know everything can be managed.
I know I'll be a mess this weekend with the anticipation of it. I know I'll be a mess that day, getting the needle and having the chemo start. I might be a mess the entire day in the infusion room.
I'm more scared about losing my hair. Being bald. Looking sick. That part scares the shit out of me. I don't know if I will be able to look in a mirror. I don't want to lose my hair. The closer it gets, the more scared I am about it. It sucks. That part sucks.
I have 5 wigs. Three have been trimmed and are ready to go, the other 2 are new and were shipped to me. I have scarves, wraps, hats. I have plenty of ways to cover my naked head. But I just don't want it naked!
I don't know how I'm going to handle it. I don't know what I'll be like when I'm bald. That scares me. Emotionally, I don't know how I'm going to handle it. Hearing "it will grow back" does NOT help at all. Would you want to look in the mirror and see a bald, sick looking cancer patient staring back at you? I know I don't!
I think it is going to be REALLY hard for me to leave the house after that. It will be really hard for me to see anyone. ANYONE. I don't even know how I'll be seeing Jim, having him look at me. Even though he will be the one to shave it all off. I'm going to be a FUCKING mess that weekend. A FUCKING MESS!
Losing my hair has been my biggest fear in this since day one. The horror and shock of that first call telling me "the results are back and it tested positive for cancer". Yeah, that sucked. Knocked the breath completely out of me and left me a ball of sadness and fear. You never want to hear those words. Ever! It sucks.
But then my hair. I LOVED my hair. Sitting wrapped with an elastic band, in a plastic bag, on a shelf in my closet. Unopened since the day it was cut off. :( I can't look at it right now. Sometimes I forget that its gone. But I'm a different person now, without my long hair. That Julie is gone now and represents the before cancer days.
Now I'm Julie with the Purple Hair, preparing for months of hell with chemo, trying to get ready to be bald. Trying to find the fight and strength. Trying to be brave. Trying to look the kick ass part that the purple hair brings. It looks strong. Maybe I'll find strength in it. Maybe. Hopefully.
Then next is the Bald Julie. That sucks. That's scary. That's the sick months. I'm afraid of that part. I don't know where I can find the strength to get through that part. And I just do NOT want to look sick!
One thing I have been thinking of is what it will be like to be out with people who know I have cancer. I don't know if I will be one of those brave and strong women who can embrace the baldness is just ROCK it. I don't know if I can do that. I might have to wear a wig to hide behind.
And how will that be, being around people who know? Who know its a wig? Who know I'm bald?
Either way... I'll get the look. The pity look. The you are sick look. I do NOT want that look. I HATE that look. Even now when I get it, I HATE that look. That's the look that makes me upset. That look beats me down and hurts so much. So much. I don't want that look.
So I don't know how I will be. Go out bald. Or wear a wig.
What about a Sunday Dinner in Jim's family? The kids were already looking at me and a bit confused. I had long blond hair. Then short hair. Now short purple hair. Would the freak out if I was bald? Or question why I have different hair whenever they see me? Or how it is now brown and shoulder length when it was short and purple? Not sure I will up for Sunday Dinner for a while just because of being worried about that one thing. It sucks.
WOW, this turned out longer than I thought! I'm meeting Brenda in just over an hour, I haven't showered and Jim said I need gas in my car! Ooops. Crap!
And I wanted to say more too!
Okay so quick. First, the Ellie Fund. OMG what a HUGE amazing help! My social worker, well, my first social worker, Allison, had me apply. WOW! House cleaning services. Four times, three hours each visit. Food delivery. 8 Meals, each is 2-3 servings. For February AND March.
And yesterday I got a letter from them. In addition to that... Grocery Store Gift Cards! For February and March, each month, the store will mail me $150 card each month. HOLY CRAP! What a huge friggin help!
I feel like I've been milking off of Jim. He picked up a bunch of prescriptions for me in January and I gave him NOTHING. We had an agreement when I moved in about me giving him money each month because I was not going to live off of him. Too many ups and downs and mess happened. But now that things are settling down a little (granted I haven't paid about $1500+ in co pays yet!), I can give him money. Got my short term disability check mailed yesterday. Going forward, they will be direct deposited. So I can deposit this one right into his account to give him $ for January that I didn't give him plus hopefully cover the co-pays he paid.
Just grateful for the Ellie Fund. Being able to cover groceries is HUGE. Plus, the food delivery and house cleaning. I can't contribute around the house. And he does SO much already. This will at least be a little off of him.
So if you ever have the chance to support the Ellie Fund... WOW! What a HUGE amazing help to me! SO incredibly helpful and almost like a little weight lifted making things that much easier to get through.
AND...
So chatting via email to my Brazilian Friend who had surgery on Saturday (mastectomy on her right only, but no reconstruction at this time. They are waiting for chemo and radiation to be done. The she will have a mastectomy on her right and start reconstruction on both with expanders at that time.)
She has not yet looked at her scar. She's scared. She doesn't want to see just one boob and a big scar on her right side. She's afraid of the mirror. Especially since she started chemo in December and is already bald too.
I looked on line for quotes. She has a few tattoos. I found one I LOVED and I knew that she would too.
LOVE IT!! SO perfect for both her and me! :)
And then I found a website. The Scar Project, Breast cancer is Not a Pink Ribbon.
http://www.thescarproject.org/mission/
VERY VERY Powerful. Strength and courage is all I see.
If you look at the site, read the mission first, then click on the images. Just powerful. And Beautiful. Very Beautiful.
Maybe I'll have that courage and strength at some point. Maybe.
Sticking to the Up Side of life... looking forward to meeting Brenda and catching up. Staying with the positives and remembering everyone I have on my side helping me through this.
I've gotten so many wonderful and supportive cards in the mail. Some so inspiring and encouraging and some that literally make me laugh out loud (a pickle birthday card Jen?) ;) LOVED it!
Last week I had cleaned off the island in the kitchen, tossing the flowers that were passed and putting the cards into a basket that once had flowers. Then I started fresh with the new flowers having space along with all the new cards. I never thought I'd be ready to clear off the island again this quickly! There is barely any space for anything other than the cards. Maybe its a good thing Jim keeps forgetting to call the furniture store to see if the bar stools we ordered are in. With all the cards, if you sat at the island now, you wouldn't have any space for anything!
I continue to hear from so many people and receive support from so many places I never expected. That is so absolutely amazing. The support I am getting really does make an absolute WORLD of difference for me!
Yesterday was my one day this week that I don't have anything going on. That's kind of nice... a busy week!
Today I'm meeting an old work friend for coffee/snack/early lunch sort of thing before my 1pm appointment at Dana Farber. I'm looking forward to catching up with Brenda who I haven't seen in a while. Always loved working with her. A no BS sort of person and I like that. Nothing fake about her.
After meeting with Brenda, heading down the street to Dana Farber. They offer integrative therapies at insanely cheap prices! A one hour session is $20. Yes, $20! For a massage, Reiki, and whatever else they have. Today is Reiki, which I have never tried before, but I'm basically open to everything. And for $20? Why not try it and see? I'm not ready for a massage at this point in my recovery, but I do have an appointment scheduled for later this month. Again, $20! Can't beat it!
Tomorrow I'm going to the support group at the cancer Support Community. I'm still not sure how I feel about it. There is one other person in the group who is under the age of 50. And a different person is going through her second round of breast cancer but much more advanced. I'm not sure if this is the right group for me.
Hard at my age to find people who I can connect with who understand the issues, fears and struggles I have. Under 40, no kids, cancer. Different issues than 60's, retired, or even younger with kids. Not more challenging either way, just different issues and concerns.
Thursday will be fun. I haven't seen Jen, pickle birthday card Jen in.... hmm... That's a tough one. And a scary one to answer! Well, we met when we were 18 or 19. We worked together and went to school together... bombed our Trig final together (not sure who took longer to finish, but I'm pretty sure we grabbed lunch after and we were both out in under 15 minutes!). But I think we might have last seen each other maybe 15 years ago. And that's a guess. Could be longer, maybe.
Anyway... we are meeting for lunch which will be great to see each other and catch up again. I'm looking forward to it.
Friday I have another follow up appointment with the plastic surgeon. I'll get another "fill" in the expanders. Damn those hurt! With losing feeling from surgery, I can't feel the needles being put through my skin into the valves of the expanders. But once inserted, she pushes in saline.
The expanders are basically balloons, under my chest muscles. They expand the muscles and skin with each "fill", slowly over however long it takes. That part varies person to person. She was able to get in more saline than I expected at my initial surgery, so I looked like I had boobs from day one. The fill I had on Feb 1st brought me back to at least where I was before my mastectomy, if not a little bigger. (not sure considering there is still a little swelling from surgery as well).
I told her I'd be up for going a bit bigger if that's possible. But the skin can only stretch so far, so we'll see. At least I did find other bras I can wear besides the surgical ones I left the hospital with. Those things were HORRIBLE. And I hated the idea of spending a ton of money on an ugly bra I'd only be wearing for a few months.
I now have 6 Hanes ugly ass front closure bras. They look like the tank style sports bras that pull over your head that have very minimal support. No underwire, no cups. Just the squish them down thing that can make a uni-boob. These are slightly V-neck with the five front closure eye hooks, but are still ugly. And I have to wear them 24/7. Keep the expanders pushing where they should be.
Friday she'll check the incisions as well, and make sure I'm healing up alright. I think I am, but she's the one with the medical degree. I am slightly concerned with some pink spots. I don't know if its an issue, healing or the hair dye dripping down on the incision scars. Guess I'll find out in a few days.
I'm also slightly concerned with a fold I have. Thing that armpit boob area when your arms are by your sides... the spot that sticks out of bras sometimes. That spot. Right by there on my left side, I have a fold when my arms are down. I'm pretty sure it will go away with more "fill", but its something else I want to ask about.
So I colored my hair again too. Well, Jim did! He was so good. I bought the dye at Sally's Beauty Supply after a long conversation with someone who worked there. Sunday we mixed it up in a paper bowl. Jim used a comb he was ready to toss to apply to slowly to my hair. I think he took 20 minutes to get it all on, trying not to get any on my scalp so it wouldn't stain me at all. He was so good. Then he helped me rinse it all out too. This time its a little bolder and brighter. But I just need it to last until the 23rd. 18 days until he shaves my head.
And that was funny too! Not sure why I didn't put it together when he was saying things about the dye staining my head. Sunday night when we had the Superbowl on, it finally clicked. Any spots that are on my scalp, will they still be there when he shaves my head? Will I have a purple spotted head? He laughed cuz he had thought of that weeks ago and THOUGHT I had already gotten that point. Nope... a little slow on that part! :) Wouldn't that be funny? A purple spotted head? Not that shaving it won't be traumatic enough! Oh well!
Chemo starts up a week from today. I'm absolutely terrified about it.... well, not completely. I don't want to be sick but more specifically, I don't want to LOOK sick. I know my doctors will give me plenty of meds to manage all of the side effects that I can come up against. I already have 3 prescriptions waiting for me at the pharmacy which would handle the effects for me once I'm home. I know I have to buy Claridin for the bone aches. I'm not so scared about all of that. I know everything can be managed.
I know I'll be a mess this weekend with the anticipation of it. I know I'll be a mess that day, getting the needle and having the chemo start. I might be a mess the entire day in the infusion room.
I'm more scared about losing my hair. Being bald. Looking sick. That part scares the shit out of me. I don't know if I will be able to look in a mirror. I don't want to lose my hair. The closer it gets, the more scared I am about it. It sucks. That part sucks.
I have 5 wigs. Three have been trimmed and are ready to go, the other 2 are new and were shipped to me. I have scarves, wraps, hats. I have plenty of ways to cover my naked head. But I just don't want it naked!
I don't know how I'm going to handle it. I don't know what I'll be like when I'm bald. That scares me. Emotionally, I don't know how I'm going to handle it. Hearing "it will grow back" does NOT help at all. Would you want to look in the mirror and see a bald, sick looking cancer patient staring back at you? I know I don't!
I think it is going to be REALLY hard for me to leave the house after that. It will be really hard for me to see anyone. ANYONE. I don't even know how I'll be seeing Jim, having him look at me. Even though he will be the one to shave it all off. I'm going to be a FUCKING mess that weekend. A FUCKING MESS!
Losing my hair has been my biggest fear in this since day one. The horror and shock of that first call telling me "the results are back and it tested positive for cancer". Yeah, that sucked. Knocked the breath completely out of me and left me a ball of sadness and fear. You never want to hear those words. Ever! It sucks.
But then my hair. I LOVED my hair. Sitting wrapped with an elastic band, in a plastic bag, on a shelf in my closet. Unopened since the day it was cut off. :( I can't look at it right now. Sometimes I forget that its gone. But I'm a different person now, without my long hair. That Julie is gone now and represents the before cancer days.
Now I'm Julie with the Purple Hair, preparing for months of hell with chemo, trying to get ready to be bald. Trying to find the fight and strength. Trying to be brave. Trying to look the kick ass part that the purple hair brings. It looks strong. Maybe I'll find strength in it. Maybe. Hopefully.
Then next is the Bald Julie. That sucks. That's scary. That's the sick months. I'm afraid of that part. I don't know where I can find the strength to get through that part. And I just do NOT want to look sick!
One thing I have been thinking of is what it will be like to be out with people who know I have cancer. I don't know if I will be one of those brave and strong women who can embrace the baldness is just ROCK it. I don't know if I can do that. I might have to wear a wig to hide behind.
And how will that be, being around people who know? Who know its a wig? Who know I'm bald?
Either way... I'll get the look. The pity look. The you are sick look. I do NOT want that look. I HATE that look. Even now when I get it, I HATE that look. That's the look that makes me upset. That look beats me down and hurts so much. So much. I don't want that look.
So I don't know how I will be. Go out bald. Or wear a wig.
What about a Sunday Dinner in Jim's family? The kids were already looking at me and a bit confused. I had long blond hair. Then short hair. Now short purple hair. Would the freak out if I was bald? Or question why I have different hair whenever they see me? Or how it is now brown and shoulder length when it was short and purple? Not sure I will up for Sunday Dinner for a while just because of being worried about that one thing. It sucks.
WOW, this turned out longer than I thought! I'm meeting Brenda in just over an hour, I haven't showered and Jim said I need gas in my car! Ooops. Crap!
And I wanted to say more too!
Okay so quick. First, the Ellie Fund. OMG what a HUGE amazing help! My social worker, well, my first social worker, Allison, had me apply. WOW! House cleaning services. Four times, three hours each visit. Food delivery. 8 Meals, each is 2-3 servings. For February AND March.
And yesterday I got a letter from them. In addition to that... Grocery Store Gift Cards! For February and March, each month, the store will mail me $150 card each month. HOLY CRAP! What a huge friggin help!
I feel like I've been milking off of Jim. He picked up a bunch of prescriptions for me in January and I gave him NOTHING. We had an agreement when I moved in about me giving him money each month because I was not going to live off of him. Too many ups and downs and mess happened. But now that things are settling down a little (granted I haven't paid about $1500+ in co pays yet!), I can give him money. Got my short term disability check mailed yesterday. Going forward, they will be direct deposited. So I can deposit this one right into his account to give him $ for January that I didn't give him plus hopefully cover the co-pays he paid.
Just grateful for the Ellie Fund. Being able to cover groceries is HUGE. Plus, the food delivery and house cleaning. I can't contribute around the house. And he does SO much already. This will at least be a little off of him.
So if you ever have the chance to support the Ellie Fund... WOW! What a HUGE amazing help to me! SO incredibly helpful and almost like a little weight lifted making things that much easier to get through.
AND...
So chatting via email to my Brazilian Friend who had surgery on Saturday (mastectomy on her right only, but no reconstruction at this time. They are waiting for chemo and radiation to be done. The she will have a mastectomy on her right and start reconstruction on both with expanders at that time.)
She has not yet looked at her scar. She's scared. She doesn't want to see just one boob and a big scar on her right side. She's afraid of the mirror. Especially since she started chemo in December and is already bald too.
I looked on line for quotes. She has a few tattoos. I found one I LOVED and I knew that she would too.
LOVE IT!! SO perfect for both her and me! :)
And then I found a website. The Scar Project, Breast cancer is Not a Pink Ribbon.
http://www.thescarproject.org/mission/
VERY VERY Powerful. Strength and courage is all I see.
If you look at the site, read the mission first, then click on the images. Just powerful. And Beautiful. Very Beautiful.
Maybe I'll have that courage and strength at some point. Maybe.
Sticking to the Up Side of life... looking forward to meeting Brenda and catching up. Staying with the positives and remembering everyone I have on my side helping me through this.
Sunday, February 3, 2013
Thank You
Last week was rough. The whole week. I'm trying to focus on as many positive things as I can, but sometimes that is easier said than done.
My mom got the genetic testing results back this week. She's negative. So that means that I got the gene from my dad. I emailed his brothers and my brother again, to let them all know. Men who are BRCA-2 positive have a 20% increased risk of prostate cancer plus there is a 50% chance that each child will have the gene. My uncle Jim has 4 kids, one daughter.
Although I know its on my dad's side, I don't know if it is my grandmother's or grandfather's side. A couple of people on my grandmother's side have been tested and tested negative. But that doesn't rule out that it didn't come from that side. There is more cancer history on my grandmother's side than on my grandfather's side. I just don't know.
All I can do is pass the info along. Any family or cousin's who want to be tested, you would need to have my results for a single site analysis. This would basically give a map to your gene sequencing to find the exact location of the mutation to see if you test positive or negative. It is much less expensive than a full test which I originally had done and it is much more likely for your insurance to cover a single site analysis, especially the further the distance we are related.
Chemo starts up in 9 days. A week from Tuesday. I am not looking forward to it. I don't want to be sick, I don't want to look sick. Chemo will do both. Wonderful. Toss in losing my hair. I'm having Jim shave my head on Saturday the 23rd, before it falls out. Hopefully before it falls out.
Friday night was fun out with the girls. I didn't get to talk to too many of them with the show on and how the table was set up. But it was still nice to see everyone and nice to get out. I was exhausted by the end of the night and ready to go home.
It caught up with me yesterday. I was EXHAUSTED. I took a 3 hour nap! Friday night I think I slept about 7 or 8 hours, then took the nap and didn't leave the house once. I didn't even check the mail yesterday! And last night I was in bed at 11 and woke up around 8. Damn! I knew being out on Friday night would take a lot out of me, but I never imagined it would hit me that hard.
That's still the one thing that I'm not used to. How absolutely tired I am all the time. I have no energy. Leaving the house for a while just knocks me out. Having a lot of activity is enough to drain me. But I get bored from doing nothing. Its a weird thing. I need to do something, but doing things completely exhausts me.
I'm still so grateful for all the support I have been getting from everyone. Last week all the cards and messages meant even more to me. I had a really bad week and just hearing from people made a really big difference.
When I'm like that, down as much as I was last week, I pull back from people. I become really anti-social. It was hard for me to go out on Friday night with my friends because of that. And I stop answering the phone, just turn the ringer off, and don't respond to anything.
But that doesn't mean I don't read everything. I read all texts, facebook messages and emails. I love getting all the cards too. Just hearing from people makes such an incredible difference for me. Knowing that people are thinking of me means so much. Especially when I'm that down.
Last week I was that down.
I'm afraid I'm going to be down the whole month of February too. Right now its the anticipation of chemo starting in 9 days. I am counting down. I hate that. Then I'll have the first chemo treatment. And then I'll get the side effects. That sucks. And on the 23rd.... I'll shave my head so I don't see my hair falling out in pieces.
All of that is going to be really difficult to handle. The whole month. I'm honestly scared. I don't know how I will be emotionally. I hate the unknown. I don't know how I will be with chemo. I know AC-T is hard. I know the side effects are rough. I know I will be even more tired during chemo that I have been recovering from surgery.
I'm still trying to focus on anything positive that I can. Little things. I will never ever again have another mammogram for the rest of my life. All the breast tissue is gone. I won't need the squish the boob test which being smaller sized, I could feel in my CHIN. I won't need to do that ever again.
I won't have to buy shampoo, conditioner,hair spray, hair color, styling gel, razors, or shaving lotion at least until June. One I start dose dense chemo, doing it every 14 days, I won't have any hair growing until I'm done. If I stay on schedule and don't need to miss any treatments, my last treatment will be on Tuesday, May 21st.
What else is a positive? Well, I've learned how many people I have in my corner. I've learned the incredible amount of support I have around me. How kind people can be. It doesn't matter the distance or time that has past, support has been from everywhere. I know how lucky I am for that. People I have not seen or talked to in 20 years have been sending me messages of support and encouragement. That has been incredible.
I bought the Chicken Soup for the Soul book on breast cancer (I still REFUSE to give cancer a capital "C". It will not get the mark of importance from me.). One of the first stories I read was called, "You'll Never Feel So Loved". It starts like this:
"A few days after hearing the devastating news that the shadow on the mammogram was indeed cancer, I received a call I'll never forget from an aunt who was a breast cancer survivor. The only part of the conversation I remember was one simple line: "You'll never feel so loved." At the time I had no clue what that could mean, but I thanked her for calling and began the journey that every cancer patient goes through."
She then goes through the incredible support she received from her family and friends. "The love was manifested in so many ways; cards, calls, prayers, meals and sometimes just one little sentence would carry me through a difficult day."
"As I look back, I have experienced what my aunt meant when she said, "You'll never feel so loved." In great part because of this love I am a cancer survivor. Yes, the treatments and advice of wonderful doctors and the prayers of many helped saved my life, but I also believe that if the soul is being fed, the body will heal."
I can not only agree with this short story, but I understand it completely. I have never felt so loved. I feel the love and support of so many people all around me. I know I have prayers and support being sent my way. And some days, it is just one kind word or message that gets me through it all.
So as scared as I am, as afraid of chemo as I am, as terrified of February as I am, I know that with the continued support from all of you, I will get through this. I will make it through February, then March, then April, then May. And then I will see June where chemo will be done.
With your support I will make it through this next step. One step at a time. Surgery done. Chemo about to start. Radiation will most likely be next, starting in July. Then another surgery, probably in September or October for swapping out the expanders for the implants, with 2 other procedures needed hopefully within the next 6 months after that to finish up the reconstruction. This will be a LONG process.
With radiation now most likely being tossed into the mix, when I thought would be my "Done" date of next January, will now most likely be next April.
BUT, again, I will get through it. 14 months. I can do that.
With your help, your support, encouragement and love.
Thank you!
My mom got the genetic testing results back this week. She's negative. So that means that I got the gene from my dad. I emailed his brothers and my brother again, to let them all know. Men who are BRCA-2 positive have a 20% increased risk of prostate cancer plus there is a 50% chance that each child will have the gene. My uncle Jim has 4 kids, one daughter.
Although I know its on my dad's side, I don't know if it is my grandmother's or grandfather's side. A couple of people on my grandmother's side have been tested and tested negative. But that doesn't rule out that it didn't come from that side. There is more cancer history on my grandmother's side than on my grandfather's side. I just don't know.
All I can do is pass the info along. Any family or cousin's who want to be tested, you would need to have my results for a single site analysis. This would basically give a map to your gene sequencing to find the exact location of the mutation to see if you test positive or negative. It is much less expensive than a full test which I originally had done and it is much more likely for your insurance to cover a single site analysis, especially the further the distance we are related.
Chemo starts up in 9 days. A week from Tuesday. I am not looking forward to it. I don't want to be sick, I don't want to look sick. Chemo will do both. Wonderful. Toss in losing my hair. I'm having Jim shave my head on Saturday the 23rd, before it falls out. Hopefully before it falls out.
Friday night was fun out with the girls. I didn't get to talk to too many of them with the show on and how the table was set up. But it was still nice to see everyone and nice to get out. I was exhausted by the end of the night and ready to go home.
It caught up with me yesterday. I was EXHAUSTED. I took a 3 hour nap! Friday night I think I slept about 7 or 8 hours, then took the nap and didn't leave the house once. I didn't even check the mail yesterday! And last night I was in bed at 11 and woke up around 8. Damn! I knew being out on Friday night would take a lot out of me, but I never imagined it would hit me that hard.
That's still the one thing that I'm not used to. How absolutely tired I am all the time. I have no energy. Leaving the house for a while just knocks me out. Having a lot of activity is enough to drain me. But I get bored from doing nothing. Its a weird thing. I need to do something, but doing things completely exhausts me.
I'm still so grateful for all the support I have been getting from everyone. Last week all the cards and messages meant even more to me. I had a really bad week and just hearing from people made a really big difference.
When I'm like that, down as much as I was last week, I pull back from people. I become really anti-social. It was hard for me to go out on Friday night with my friends because of that. And I stop answering the phone, just turn the ringer off, and don't respond to anything.
But that doesn't mean I don't read everything. I read all texts, facebook messages and emails. I love getting all the cards too. Just hearing from people makes such an incredible difference for me. Knowing that people are thinking of me means so much. Especially when I'm that down.
Last week I was that down.
I'm afraid I'm going to be down the whole month of February too. Right now its the anticipation of chemo starting in 9 days. I am counting down. I hate that. Then I'll have the first chemo treatment. And then I'll get the side effects. That sucks. And on the 23rd.... I'll shave my head so I don't see my hair falling out in pieces.
All of that is going to be really difficult to handle. The whole month. I'm honestly scared. I don't know how I will be emotionally. I hate the unknown. I don't know how I will be with chemo. I know AC-T is hard. I know the side effects are rough. I know I will be even more tired during chemo that I have been recovering from surgery.
I'm still trying to focus on anything positive that I can. Little things. I will never ever again have another mammogram for the rest of my life. All the breast tissue is gone. I won't need the squish the boob test which being smaller sized, I could feel in my CHIN. I won't need to do that ever again.
I won't have to buy shampoo, conditioner,hair spray, hair color, styling gel, razors, or shaving lotion at least until June. One I start dose dense chemo, doing it every 14 days, I won't have any hair growing until I'm done. If I stay on schedule and don't need to miss any treatments, my last treatment will be on Tuesday, May 21st.
What else is a positive? Well, I've learned how many people I have in my corner. I've learned the incredible amount of support I have around me. How kind people can be. It doesn't matter the distance or time that has past, support has been from everywhere. I know how lucky I am for that. People I have not seen or talked to in 20 years have been sending me messages of support and encouragement. That has been incredible.
I bought the Chicken Soup for the Soul book on breast cancer (I still REFUSE to give cancer a capital "C". It will not get the mark of importance from me.). One of the first stories I read was called, "You'll Never Feel So Loved". It starts like this:
"A few days after hearing the devastating news that the shadow on the mammogram was indeed cancer, I received a call I'll never forget from an aunt who was a breast cancer survivor. The only part of the conversation I remember was one simple line: "You'll never feel so loved." At the time I had no clue what that could mean, but I thanked her for calling and began the journey that every cancer patient goes through."
She then goes through the incredible support she received from her family and friends. "The love was manifested in so many ways; cards, calls, prayers, meals and sometimes just one little sentence would carry me through a difficult day."
"As I look back, I have experienced what my aunt meant when she said, "You'll never feel so loved." In great part because of this love I am a cancer survivor. Yes, the treatments and advice of wonderful doctors and the prayers of many helped saved my life, but I also believe that if the soul is being fed, the body will heal."
I can not only agree with this short story, but I understand it completely. I have never felt so loved. I feel the love and support of so many people all around me. I know I have prayers and support being sent my way. And some days, it is just one kind word or message that gets me through it all.
So as scared as I am, as afraid of chemo as I am, as terrified of February as I am, I know that with the continued support from all of you, I will get through this. I will make it through February, then March, then April, then May. And then I will see June where chemo will be done.
With your support I will make it through this next step. One step at a time. Surgery done. Chemo about to start. Radiation will most likely be next, starting in July. Then another surgery, probably in September or October for swapping out the expanders for the implants, with 2 other procedures needed hopefully within the next 6 months after that to finish up the reconstruction. This will be a LONG process.
With radiation now most likely being tossed into the mix, when I thought would be my "Done" date of next January, will now most likely be next April.
BUT, again, I will get through it. 14 months. I can do that.
With your help, your support, encouragement and love.
Thank you!
Friday, February 1, 2013
Two More Countdowns. 11 Days & 22 Days. :(
This past week has been pretty rough for me. The weekend was the worst part, but it hasn't gotten a whole lot better. At least I haven't had any more meltdowns.
Chemo starts is 11 days. Tuesday the 12th. I'm freaking out. My medical oncologist said I will lose my hair within 2 weeks of starting chemo. That freaks me out more.
With surgery, that's a one time thing. I go in for surgery. They cut my boobs out & put in balloons. I go home. I recover. Fine. Do it. Let's Go.
Chemo? That's a different ballgame! Eight treatments over 16 weeks, if my levels are good and no treatments need to be pushed back at all. Four months? With side effects the entire time? Losing my hair? Feeling and even worse, LOOKING sick? :( That's not a okay, let's go sort of thing.
Yeah, fine, my hair will grow back when this is done, but it is still fucking falling out! Anyway out there want to lose your hair? Do you want your skin color to change? Do you want super dry skin and mouth sores? To feel super weak with no energy? Do you want "chemo brain" where you can't remember words or anything? Do you want to look sick and see pity in other peoples eyes when they look at you? Wanna trade spots with me?? Cuz I don't want any of that!
With surgery, I'm slow to move and have limited range of motion. But that's pretty much it, unless you see me naked and if you know me, that's not me! People who see me can't believe that 3 weeks ago I had a bilateral mastectomy. All I hear is how great I look.
Out and about, people don't know. When I go to CVS, Walmart and the grocery store today, no one will know I am going through cancer treatments unless I say it! I can pretend I am who I was before all of this.
But when chemo starts? When I look sick? Everyone will know. I'll be sick. I'll look the part of cancer patient. I don't want that part. I don't want to look like that. I don't want pity. I don't want to be sick and I don't want to lose my hair.
Yet, I don't have a choice. Lucky me.
I know there is NO way I can handle seeing my hair fall out. I had already asked Jim to shave my head at the first sign of it. But I've picked a date. February 23rd. If my hair hasn't started to fall out by that point, then on Saturday, February 23rd, Jim is going to shave my head for me. I just don't want to see it fall out.
I'm scared. I know it is going to be SO hard for me to get through this part. That whole weekend before, I know I'm going to be a mess. I already told Jim to prepare. This past weekend is NOTHING compared to how I will be next weekend just before starting chemo.
For surgery, I could DO something. I could prepare. I could get the house ready & buy what I needed. I could take steps to make recovery easier and figure out ways to be ready. For chemo, I can't. I'm done. There is nothing left to do. Okay, so I have a FEW things to buy. A mouth wash recommended by my dentist and in a few books I have read. Claritin-D 12 Hour which helps with the bone aches I'll get from the shot I'll be taking on Wednesdays to boost my immune system after chemo wipes it all out. That's it.
I'm freaking out about it. Freaking out.
The chemo I'm taking is ACT. I found a good link on Scott Hamilton's website about this treatment. I'm doing "dose dense" which is every 14 days. It was typically done in 21 day cycles, which does give your body more time to recover, but the dose dense is supposed to have better results.
Here's the link:
http://chemocare.com/chemotherapy/faq/act-chemotherapy.aspx
I'll be taking AC for the first 4 treatments, then Taxol for the next 4. Taxol can cause neuropathy which is numbness in my hands and feet, in addition to much of the same side effects of the other 2 like mouth sores, dry mouth, hair loss, and nausea, just to name a few.
These are VERY common side effects. It is pretty much a given that I will have these side effects with these drugs, but the severity of them can vary. I'm trying to think positive that I won't have them too bad, all while knowing that I WILL have to deal with them.
Biotene is a mouth wash and mouth spray, a brand that my dentist recommended. Plus it was mentioned in several books. Weird that I have actually seen a commercial for it in the past week, since my dentist gave me a sample of it. This is supposed to help with the mouth sores and the dry mouth.
I'll be getting plenty of drugs for the nausea from the doctor. She already sent in a prescription to CVS for me for 3 drugs for me to have at home after my first treatment. I got my text from CVS that they are ready. Wonderful. I have another med to refill which is a $45 co-pay. Not sure how much the other 2 prescriptions will be when I head over there today. I'm expecting at least one of them to be $45 and that I'll be spending close to $150 today at CVS. Lucky me!!
Glutamine Powder, Vitamin B6 and Lysine are all supposed to help with sore throats and mouth sores as well. We have Glutamine Powder at home. I THINK I have B6, but I'm not sure. I'm going to check what we have for vitamins before I head out shopping today to make sure I can stock up.
I'm trying really hard to stay as positive as I can. But I'm still scared. I didn't sign up for this. I don't want this.
I'm still exhausted just being out for a few hours. On Wednesday I was out for 5 hours straight between a support group, stopping at work, then going to the bank. That night I was at an event at the cancer community support for a new exercise program starting up at the South Shore YMCA which was an hour long. Yesterday I had 2 doctor appointments in the same building.
I WAS EXHAUSTED yesterday. I fell asleep on the sofa shortly after getting home from the 2 appointments. Wednesday just wiped me out. I can't be out and about. I just get too tired for it. But at the same time, I'm bored out of my mind. I miss having a life.
Jim leaves for work in the morning and he's going to the gym 3 nights a week taking his MMA classes. I know that is important for him and helps him keep his sanity. I can't work. I have been driving again for a week now. I'm not able to exercise yet and that will only get worse for me. I am home with the dog, all day, every day.
This week, other than having doctor appointments, then the support group and stopping at work on Wednesday, I saw Pam on Tuesday. That's it. Every night I'm home while Jim is out, every day I'm home, while he is at work. I am not a TV person. It SUCKS. I can't even take Rocco for a walk because I can't hold him on the leash yet. It would be too painful after the surgery.
I miss having a life. I miss doing things, being out and doing what I enjoy doing. I miss seeing people.
Tonight I'm looking forward to seeing friends for the Hingham Cabaret that Carrie is in. Ten of us are going to watch the show and it will be really nice to see the group of girls out. I already expect to be exhausted tomorrow.
Next week, I just have 2 appointments and the support group. And I know next weekend is going to suck, that close to starting chemo.
I'm just bored and frustrated. I hate being home ALL THE TIME but I don't have the energy to be out and my energy level is only going to be lower once chemo starts. Toss in how horrible I am going to feel physically (being sick) and emotionally (losing my hair and looking sick) and I know I won't want to go out even if I do have the energy.
Plus I will have to watch WHERE I go, if I can feel up to going anywhere. I can't go places with big crowds. Too many people would be too many germs and would give me a better chance of getting really sick with a compromised immune system. So it just isn't going to work for me.
I guess I'm just having a pity party for myself right now. I keep trying to remind myself of the amazing support I have from everyone. The messages, cards, texts... I LOVE it all and appreciate it so much. It really does mean a lot to me to feel like people are thinking about me and sending their best to me. It means so much.
But I still feel so alone and so lonely. I'm always alone. And when I start to get into this mode, it gets worse. Then I become anti-social and pull away from people even more. I'm less likely to answer the phone or reply to people. That's when I'm most fake when I do. Like everything is really okay, when it isn't. Not at all.
As much as I'm looking forward to going out and seeing the girls tonight, I'm nervous. I know I'll be tired. I know I'm sore and uncomfortable. I know its crowded there. What if people bump me? What if someone sitting near me is hacking up a lung? And I know emotionally, I'm not in a great place right now, so tonight I will be at my most fake. Put on the happy face like its All Good, when it is nowhere near good.
Two countdowns I've been doing. 11 Days until I start chemo. 22 Days until I am bald. Really?
How did this become my life? I want my life back.
Chemo starts is 11 days. Tuesday the 12th. I'm freaking out. My medical oncologist said I will lose my hair within 2 weeks of starting chemo. That freaks me out more.
With surgery, that's a one time thing. I go in for surgery. They cut my boobs out & put in balloons. I go home. I recover. Fine. Do it. Let's Go.
Chemo? That's a different ballgame! Eight treatments over 16 weeks, if my levels are good and no treatments need to be pushed back at all. Four months? With side effects the entire time? Losing my hair? Feeling and even worse, LOOKING sick? :( That's not a okay, let's go sort of thing.
Yeah, fine, my hair will grow back when this is done, but it is still fucking falling out! Anyway out there want to lose your hair? Do you want your skin color to change? Do you want super dry skin and mouth sores? To feel super weak with no energy? Do you want "chemo brain" where you can't remember words or anything? Do you want to look sick and see pity in other peoples eyes when they look at you? Wanna trade spots with me?? Cuz I don't want any of that!
With surgery, I'm slow to move and have limited range of motion. But that's pretty much it, unless you see me naked and if you know me, that's not me! People who see me can't believe that 3 weeks ago I had a bilateral mastectomy. All I hear is how great I look.
Out and about, people don't know. When I go to CVS, Walmart and the grocery store today, no one will know I am going through cancer treatments unless I say it! I can pretend I am who I was before all of this.
But when chemo starts? When I look sick? Everyone will know. I'll be sick. I'll look the part of cancer patient. I don't want that part. I don't want to look like that. I don't want pity. I don't want to be sick and I don't want to lose my hair.
Yet, I don't have a choice. Lucky me.
I know there is NO way I can handle seeing my hair fall out. I had already asked Jim to shave my head at the first sign of it. But I've picked a date. February 23rd. If my hair hasn't started to fall out by that point, then on Saturday, February 23rd, Jim is going to shave my head for me. I just don't want to see it fall out.
I'm scared. I know it is going to be SO hard for me to get through this part. That whole weekend before, I know I'm going to be a mess. I already told Jim to prepare. This past weekend is NOTHING compared to how I will be next weekend just before starting chemo.
For surgery, I could DO something. I could prepare. I could get the house ready & buy what I needed. I could take steps to make recovery easier and figure out ways to be ready. For chemo, I can't. I'm done. There is nothing left to do. Okay, so I have a FEW things to buy. A mouth wash recommended by my dentist and in a few books I have read. Claritin-D 12 Hour which helps with the bone aches I'll get from the shot I'll be taking on Wednesdays to boost my immune system after chemo wipes it all out. That's it.
I'm freaking out about it. Freaking out.
The chemo I'm taking is ACT. I found a good link on Scott Hamilton's website about this treatment. I'm doing "dose dense" which is every 14 days. It was typically done in 21 day cycles, which does give your body more time to recover, but the dose dense is supposed to have better results.
Here's the link:
http://chemocare.com/chemotherapy/faq/act-chemotherapy.aspx
I'll be taking AC for the first 4 treatments, then Taxol for the next 4. Taxol can cause neuropathy which is numbness in my hands and feet, in addition to much of the same side effects of the other 2 like mouth sores, dry mouth, hair loss, and nausea, just to name a few.
These are VERY common side effects. It is pretty much a given that I will have these side effects with these drugs, but the severity of them can vary. I'm trying to think positive that I won't have them too bad, all while knowing that I WILL have to deal with them.
Biotene is a mouth wash and mouth spray, a brand that my dentist recommended. Plus it was mentioned in several books. Weird that I have actually seen a commercial for it in the past week, since my dentist gave me a sample of it. This is supposed to help with the mouth sores and the dry mouth.
I'll be getting plenty of drugs for the nausea from the doctor. She already sent in a prescription to CVS for me for 3 drugs for me to have at home after my first treatment. I got my text from CVS that they are ready. Wonderful. I have another med to refill which is a $45 co-pay. Not sure how much the other 2 prescriptions will be when I head over there today. I'm expecting at least one of them to be $45 and that I'll be spending close to $150 today at CVS. Lucky me!!
Glutamine Powder, Vitamin B6 and Lysine are all supposed to help with sore throats and mouth sores as well. We have Glutamine Powder at home. I THINK I have B6, but I'm not sure. I'm going to check what we have for vitamins before I head out shopping today to make sure I can stock up.
I'm trying really hard to stay as positive as I can. But I'm still scared. I didn't sign up for this. I don't want this.
I'm still exhausted just being out for a few hours. On Wednesday I was out for 5 hours straight between a support group, stopping at work, then going to the bank. That night I was at an event at the cancer community support for a new exercise program starting up at the South Shore YMCA which was an hour long. Yesterday I had 2 doctor appointments in the same building.
I WAS EXHAUSTED yesterday. I fell asleep on the sofa shortly after getting home from the 2 appointments. Wednesday just wiped me out. I can't be out and about. I just get too tired for it. But at the same time, I'm bored out of my mind. I miss having a life.
Jim leaves for work in the morning and he's going to the gym 3 nights a week taking his MMA classes. I know that is important for him and helps him keep his sanity. I can't work. I have been driving again for a week now. I'm not able to exercise yet and that will only get worse for me. I am home with the dog, all day, every day.
This week, other than having doctor appointments, then the support group and stopping at work on Wednesday, I saw Pam on Tuesday. That's it. Every night I'm home while Jim is out, every day I'm home, while he is at work. I am not a TV person. It SUCKS. I can't even take Rocco for a walk because I can't hold him on the leash yet. It would be too painful after the surgery.
I miss having a life. I miss doing things, being out and doing what I enjoy doing. I miss seeing people.
Tonight I'm looking forward to seeing friends for the Hingham Cabaret that Carrie is in. Ten of us are going to watch the show and it will be really nice to see the group of girls out. I already expect to be exhausted tomorrow.
Next week, I just have 2 appointments and the support group. And I know next weekend is going to suck, that close to starting chemo.
I'm just bored and frustrated. I hate being home ALL THE TIME but I don't have the energy to be out and my energy level is only going to be lower once chemo starts. Toss in how horrible I am going to feel physically (being sick) and emotionally (losing my hair and looking sick) and I know I won't want to go out even if I do have the energy.
Plus I will have to watch WHERE I go, if I can feel up to going anywhere. I can't go places with big crowds. Too many people would be too many germs and would give me a better chance of getting really sick with a compromised immune system. So it just isn't going to work for me.
I guess I'm just having a pity party for myself right now. I keep trying to remind myself of the amazing support I have from everyone. The messages, cards, texts... I LOVE it all and appreciate it so much. It really does mean a lot to me to feel like people are thinking about me and sending their best to me. It means so much.
But I still feel so alone and so lonely. I'm always alone. And when I start to get into this mode, it gets worse. Then I become anti-social and pull away from people even more. I'm less likely to answer the phone or reply to people. That's when I'm most fake when I do. Like everything is really okay, when it isn't. Not at all.
As much as I'm looking forward to going out and seeing the girls tonight, I'm nervous. I know I'll be tired. I know I'm sore and uncomfortable. I know its crowded there. What if people bump me? What if someone sitting near me is hacking up a lung? And I know emotionally, I'm not in a great place right now, so tonight I will be at my most fake. Put on the happy face like its All Good, when it is nowhere near good.
Two countdowns I've been doing. 11 Days until I start chemo. 22 Days until I am bald. Really?
How did this become my life? I want my life back.
Subscribe to:
Posts (Atom)