In the past two weeks, I've been at the state house twice to lobby for our density notification bill. I've been working on making connections and establishing relationships with legislators and their offices. So far so good! Today while I'm on the sofa, between napping, my plan is to send out more follow up emails and to try to set up appointments for when I next head in.
Last Sunday on the 6th, I did end up doing the Making Strides walk. My friend Melissa met me in town and I took a bus set up by another group, someone I "met" online. It was nice to meet her in person but I was so grateful she invited me along on the bus!
Somehow with only a weeks notice, I still raised $700 online and I have one check being sent in for $50 and another check was sent in, but I'm not sure how much for. SO, over $750 in a week was donated by friends and family. I was just touched by the support. It really meant so much to me.
The day of the walk, it was cold, raw and rainy. I was pretty chilled by the whole thing. And for some reason, we did the 5 mile walk, but with all the walking around before and after? It was closer to 7 miles when all was said and done. I was so tired and sore that night. Jim was great and had lunch cooked when I walked in the door and served it to me while I was on the recliner. How great is that?
Monday I slept most of the day. I had signed up for a new exercise class that night with my friend Jen and still went but went SO easy while I was there. It was a barre fitness class, sort of yoga, pilates and ballet all rolled into one. I couldn't do everything they were doing in class, but I tried to do as much as I could. WOW, between walking on Sunday then the class on Monday? Yeah, I was sore.
Tuesday of last week I was back at the state house. More walking. I wore a pedometer but put it on when I met Marian at her office behind the state house. With it on, I walked 4 miles, and it was probably another mile before I put it on. BUT, I made so many great connections during the day and it was fun.
That night my feet were throbbing and in so much pain from the neuropathy and I was completely exhausted. That was me pushing things too far. The Sunday walk, Monday night barre class and then the state house on Tuesday? Yeah, too much! I was very whinny that night and so uncomfortable.
On Wednesday, I had a doctor appointment follow up with my medical oncologist. My blood work looked good and she wanted to check in with me on how I'm doing with Tamoxifen, the estrogen blocker that I have been on for 2 months. She knows that I have side effects from it, including mood swings and hot flashes. Normal. JOY! And I'm already on one medication that they use for the side effects. Might end up having the dosage increased to help. But she wanted to see how my appointment went the following day.
Either way, she said I would need time to adjust. The Tamoxifen was blocking hormones and impacting my body. Having surgery (which I did yesterday), would have even stronger effects on my body and increase the same side effects with a much greater intensity. Again, my body would need time to adjust. I guess Jim will need that too, especially if the mood swings increase!
The only time I left the house on Wednesday was for that one doctor appointment. Then I came home and went back to bed!
Thursday I was still exhausted and recovering from Sun-Tues. But I had yet another doctor appointment. This one was with a neuro-oncologist and a new doctor in my list. He was really nice and pretty down to earth. I liked him. After a few tests he did, yup, I have neuropathy, and more so in my feet. Okay, no surprises there.
He was really encouraging with it all. He said that I had nerve damage from when I went through chemo and had the pain I got from Taxol. But since the pain isn't like that now, it has already gotten better and he's very optimistic that I will make a full or near full recovery. It will just take time. There is nothing that can be done to speed up the process.
The only thing that can be done is to manage the pain associated with neuropathy. He said there is pads I could use for my feet with medication in them, but without insurance he said, "They are very expensive." My insurance company requires prior authorization on them and limits the amount that I can use (which is less than what he is prescribing for me). So right now I'm waiting on that.
If I can't get that, he did give me a prescription for something else, which doesn't work as well, but he said would have some sort of effect to maybe help a little. It is more numbing than anything else, and I just don't see how that would be helpful. Pain or numbness? Hmm...
He doesn't want to give me a prescription to handle the pain, because it would be more something that would impact how my brain reacts to and responds to it. I'm already on 3 other medications that impact brain function. He's afraid that if I am on another one, it would make me lethargic and increase mood swings even more than they already are.
After that appointment on Thursday, again, I was back at home and on the sofa. I was exhausted STILL! The beginning of the week had really knocked me for a loop!
Friday was a little busier. I was up early with Jim, then a nurse called from the hospital for my pre-op evaluation. She scheduled me for blood work to be done a few hours later too. So I was out the door a little after 10 to head to get my blood work done. Between the pre-op blood work, the tests needed from my medical oncologist, the neuro-oncologist and then blood work my primary care doctor had requested as well, I ended up having 6 vials of blood taken! And I hate needles too!
After blood work, I had about an hour to kill before I had a massage scheduled at the cancer center. I stopped at Derby Street Shops for a bracelet I wanted at Brighton. It supports breast cancer research and awareness. http://www.brighton.com/product/bracelets/36956-96333/power-of-pink-power-of-pink-2013-bracelet
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| Isn't this SO pretty! |
After that stop, I still had over 45 minutes to kill. I stopped at Marshall's and believe it or not, got some Christmas gifts. Jim's niece is now pretty much done so another one checked off the list! And after looking at the list again today, I'm more than half way done. I need something else for my brother and for my dad, 3 gift certificates, and then Jim and my grandfather, who both have their birthday on Dec 22nd too! SO bday and xmas. But I know what I'm getting Jim, just need to order everything for him.
My massage was great, then I went home and napped before Jim got home. We went out to dinner, back to our regular 99. Always really good to see them there.
When we got home, I had a meltdown. That was a big one too. Nerves about knowing I had surgery on Monday. I had been trying so hard to keep busy and keep my mind off of things and not be worried or stressed, but it all hit me and I lost it. Jim tries so hard but I know he can only take so much.
Saturday we had plans to go to the corn maze with my friend Jen and her fiance Jeff. We went through it much faster than I thought we would, even after our first attempt brought us right back to the start. Marini Farm in Ipswich was a great little place. The maze was a blast and they had so many cute activities for kids, plus a great little shop with local farm fresh produce and baked goods. I got some maple syrup, honey, and monkey bread! LOVE monkey bread!
Here are a couple of pictures from the day:
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| Jim and me at their photo op spot. |
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| Jen and Jeff posing too. |
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| Outside the store, I bumped into an old friend. :) |
Jen and Jeff had plans closer to Ipswich, so we had taken 2 cars up there. After the farm, Jim and I stopped at the computer store in Cambridge for him to look at a new laptop (his died a few months ago and he really needs a new one to get work done more effectively at home.)
We were starving by then and on the way home stopped at The Chateau for dinner. For the first time ever, I was a little disappointed. When we got there, I joked at how many of the different locations I had eaten at, about half! This was probably the worst overall experience I had at any of them ever. An oven alarm was BLARING for most of the time we were there, into the dining room. I heard another table complain and their waitress said there was nothing she could do (I think it was from a fryer or something, so it was on and off the whole time).
Our waitress was horrible. We never saw her, she never checked on us and when we were done, we waited for well over 10 minutes for the bill. Both of us had food to take home. I had some fettuccine left and more than half of my eggplant parm which was SO good. When I could FINALLY eat again on Monday night, no eggplant parm! :( She only gave me the fettuccine! Even with the horrible service, I wasn't going to complain, but when I saw she didn't give me most of the eggplant I said I wanted and that we paid for? Yeah, sent a nastygram message to the restaurant. Just sucks, cuz the food is really really good, portions huge and typically the service is good. She ruined the whole experience.
Unfortunately, that was supposed to be a great meal for me, my last meal for 48 hours! We headed home after that and just hung out. I did okay for the most part on Saturday night, even though it was still on my mind.
Sunday was a good morning. Jim went out food shopping and then he was working in the back office. I got a bunch of things done around the house, finished laundry and did some cleaning. I tried to keep myself busy, since I wasn't able to eat anything. Clear liquid diet all day with the "bowel prep". I will not go into details of that, but it is not a fun way to spend a Sunday. Lets just say I needed to keep close to the bathroom all day.
In the afternoon, just before the Patriots game was going to start, Jim let out Rocco. He was out for a while and when he came back, he said friends of his from out of town were in town unexpectedly. They wanted to get together with Jim for a bit. Jim hadn't even talked to them in months.
Now with Jim, he NEVER goes out with friends. He works his ass off all day and is home working as well most nights. He goes to the gym 3 nights a week most weeks, if he's feeling okay, and that's it. He works around the house, in the yard, works and goes to the gym. He NEVER goes out with the guys. Never.
I told Jim that I wanted him to go, I just really wished it was any other weekend. I asked him how long he thought he'd be out, and he said with driving back and forth, no more than 3 hours max. Okay, I could handle that. I did handle that. Problem was, he was longer than 3 hours!
By the time they guys called back and were on their way to meet Jim at the sports bar, it was about 5:30. I guess they got lost on their way, then Jim bumped into guys from his gym too. He had a really good time out. At 8:30, I was still doing okay, but shortly after that, not so much. Out of distractions. Game was over, my mind was racing and I was starting to freak out.
Jim didn't call me when he left the bar. I guess he was driving and by a cop when I had texted him. Twice. So he couldn't even read it, forget about replying to me. I called too, but got his voice mail, which pushed me over the edge. I was sobbing in the message I left for him. That was while he was in a bad intersection trying to get to the highway to head home.
He didn't even listen to my message and called me back when he was on the main road. He was able to calm me down a bit while we talked on the phone and he stayed on the phone with me his entire drive home. When he got home, he held me in his arms while I was a mess, crying. I was just scared about having surgery.
All I could think about was if they found more cancer. There was a risk of that. What if they found cancer? What if I needed chemo again? What if it was bad when they found it? I was Murphy after all. What would they find when I had surgery? Could I handle it?? I knew I couldn't go through cancer and chemo again. I told Jim on Sunday night, I can't do chemo again. If there is cancer, I just can't do chemo again.
He got me calmed down enough to sleep.
Monday morning he was up pretty early and went to work in the back office. I stayed in bed and slept in. We were aiming to leave the house at 9:30 to check in for 10am. He woke me up at 9:10 and I started flying around getting everything ready, taking a shower and getting dressed in comfy clothes to wear home. Somehow we managed to check in right at 10am. Luckily we didn't hit any traffic on the way.
We sat in the waiting room for less than 10 minutes when my name was called. We headed back to pre-op and I had to change into the wonderful johny and hospital socks, with nothing else on. Everything else was in my bag. I met the anesthesiologist, so many nurses, and then my surgeon came by too. I was doing really well for me. No melt downs, no panic attacks, no nothing.
Then it was time for them to give me an IV. I warned them, I don't do well with needles. They could only use my left arm because of my risk of lymphedema on my right.
Nurse #1 poked me once and my vein rolled when I tensed up. She said she'd have someone from anesthesia do it. Nurse #2 came in and I had my arm under the warming blanket to help the veins prep, a few pokes didn't work.
That's when they remembered that I wasn't allowed to even drink anything that morning along with not eating and the bowel prep the day before. I was insanely dehydrated and my veins were effected. Not cooperating.
By nurse #3, I crying. She warned me that the one she was doing would hurt. Wonderful! Put he palm of your hand up in front of your face. Flex your hand backwards and look at the veins right there at the crease of your wrist. That's where she was going. With a child needle. That ultimately worked to get me the drugs to go under, but while I was out, they swapped it out for another IV.
I counted my arm around the bruises this morning. I got 10 pokes yesterday. Yeah, I was sobbing there. I f'ing HATE needles and I was awake for 9 IV attempts! NOT fun! Five of them along are along the top of my hand. Two around my wrist. One on the inside of my forearm and one outside and the last (which was the first attempt) was in the crease of my elbow. That just sucked.
Because it took so long to get a good IV in, I was put under pretty much immediately. Said by to Jim in the hallway when they were wheeling me to the operating room and Jim was walking next to me to go to the waiting room. I don't remember anything after that.
I think Jim was there when I work up from surgery. I was pretty out of it and groggy. My surgeon, the gynecologic oncologist, talked to Jim while I was still out to tell him how things went. Just my ovaries and fallopian tubes were taken. No cancer was found so nothing else needed to come out. All went well and as she had expected.
The surgery was called:
Prophylactic Bilateral Salpingo-Oopherectomy
What does that mean?
Prophylactic is preventative. I don't have cancer but now I won't get cancer in my ovaries or fallopian tubes because I don't have them anymore.
Bilateral is both sides, both ovaries and both fallopian tubes.
Salpingo is the fallopian tubes
Oopher is the ovaries
ectomy means removal of
SO I had preventative surgery to remove both ovaries and both fallopian tubes.
If more cancer was found, I would have needed my uterus removed and some lymph nodes too. Luckily that didn't happen. I still have a risk of ovarian but now back to the normal general female population risk of 1.7% instead of the 30% risk that I was on Sunday.
When I woke up, I was sore. I am still sore. My insides were literally ripped out of me. I can't lift more than 10 pounds for a month. Laundry? HA HA! Oh well. If Jim carries it, I can do it.
Right now moving in general hurts. They gave me pain meds which I am taking, but I'm also trying to take it easy. I have ice on my belly and that helps. I needed Jim to help me get out of bed this morning. Bending down sucks. I dropped my phone and struggled to pick it up off the floor.
I was laying down yesterday and however I was to help my belly, hurt my shoulder. And my throat is SO dry still from the tube they had down my throat during surgery.
Overall, I should be a little better by tomorrow. I'm not allowed to shower or drive until tomorrow night. Hopefully I will heal up from this quickly. But I'm still just really tired.
So that was my week. Now I'm recovering.
This coming week will be very very quiet for me. A friend asked me when I'd be up for a visit and I know her work schedule is very flexible. I asked if she wanted to meet for lunch on Thursday. I know I'll be going stir crazy by then and I'll be allowed to drive then too, so it would be nice.
Friday I am supposed to be going to a breast cancer in women under 40 event through Dana Farber. Depends on how I'm feeling cuz that could be a longer day. But this weekend we don't really have much going on. I just want to take Rocco to the dog park and I found a place that is doing photos for families and dogs at an outdoor space. The sitting fee includes a disk of the photos and the donation goes to a dog shelter nearby. I also want to go to that dog shelter cuz there is an American Bulldog female that I want to see. Still working on Jim getting a second dog! Rocco needs a friend!
But that's my entire week. Quiet. Resting. Recovering.
I got great messages from friends and family and that made me feel great. I appreciate it so much.
Day by day and slowly trying to make progress. That's all I can do.
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