But I really shouldn't complain. Considering all of the horrible things I heard of and thought about chemo, fatigue is the main side effect I have had. I haven't gotten sick once and I've only been nausea a few times. I haven't had the bone aches I was told about with the shot I get. I haven't had the horrible mouth sores I heard about and expected.
I haven't had dry mouth or cotton mouth either. The thing with that... its more like this weird film thing in my mouth. Not cotton mouth after a night of drinking. Just this weird sort of film inside my mouth that I can't shake. The Biotene gum does help with that though. Not uncomfortable or bad, just weird.
The week I get chemo, I have almost no appetite. Hard to get anything down at all, so when I am hungry, I eat whatever it is that I want. And I try to toss in some protein shakes or the Carnation Instant Breakfast things for something... protein without soy, but something in my belly a little too.
I have gotten several nose bleeds, to the point its every time I blow my nose. That drives me nuts! I now have cuts inside my nose and whenever I blow it, they bleed. Wonderful.
Then there is the chemo brain. Sometimes just a fuzzy thing where I can't remember words or sometimes blocks of time. I seem to be repeating myself more than usual too. And I have to write everything down. I'll remember that I was thinking about something, but no details on it. I hate that. I've been taking notes with everything I do and using the "reminders" thing on my phone. Click on the microphone and talk to it and even if part is wrong, hopefully it will be enough for me to remember what I wanted to remember.
But the fatigue is the biggest. And hardest. I was pretty tired last night and went to lay in bed around 9:30. I was asleep by 10pm. This morning I was up around 7am. Okay, so you'd think that 9 hours of sleep would be good. Nope. Had coffee and cereal and by 9:30am I was so exhausted I couldn't even lift my head off the sofa! Its weird, cuz the energy comes in bursts, randomly. I think I get it down, morning, afternoon, evening... nope. Then its different.
Today I had some energy from about 1-4. Then I crashed again. Almost napped on the sofa and now on the recliner again, head back. I know there is laundry downstairs that I need to fold, but the thought of going down 2 flights of stairs to get it? HELL NO! I couldn't make it down and up again! That would just wipe me out right now.
So those are the side effects.
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What else??? How about the bald thing?
I knew my hair was thinning. I was thinking of having Jim shave my head last weekend, but it wasn't really thinning much at that point. The doctors and nurses all said it would be about 2-3 weeks in that I'd lose my hair. Tuesday will be 3 weeks.
To say I was freaking out about this is an understatement of all understatements. Day one I told Jim that I didn't want to lose my hair. I remember laying on the bed crying about the diagnosis and that was one of the things I was afraid of. I seriously would have done almost anything to avoid it.
When I had my surgery, I knew Jim couldn't take care of my long hair. That's why I cut it short New Years weekend. So he could take care of it for me without having issues with it. When I had wrist surgery in September, it was pretty sad seeing the attempt of a pony tail he did. And that was for a week! Short before surgery was the way to go.
But I hated it. It wasn't on my terms. It was cancer taking my hair and my choice from me. That's why I wanted to go purple. My terms. My decision. My choice. My thing. Just me.
Going purple helped but still... wasn't the same. I still now miss my long hair. I even dream of it. I hate that part. I hate dreaming of my hair.
But this week, my hair was really getting thinner. I could feel it. Even with thin hair before, I had a ton of it. But this was different. This was baby fine thin hair. The texture was different. And then I could start to see the difference. Not enough that anyone else would really notice, maybe just Jim if I pointed it out specifically, but it was enough that I could see. I could tell. I could feel it.
The waiting was killing me. Killing me! Every time I put my hands through my hair, would more fall out? Would I have pieces all over my clothes? Would I wake up in the morning with clumps of purple hair on my pillow? What about in the shower? Would it clog the shower from my hair falling out? Would it all come out in a few days? Would the wind take pieces or would it get caught in my chapstick like others have said it did for them? When??? WHEN!
Yup, the waiting was making me absolutely crazy.
Somehow, yesterday afternoon I got a burst of courage and I'm not sure from where. But I knew it was time. Jim was sitting at the island in the kitchen working on his new laptop. I yelled over to him, "Will you help me now? I need to do this. Now."
We went into the bathroom, he got out his clippers and asked me which size I wanted to go with. Then I stuck my head over the bathroom sink and he started to shave it off. And kept shaving. And kept shaving.
I'm lucky. Jim is super supportive in all of this. He made it much easier for me. Plus, he's absolutely meticulous. He was back and forth, over and around, getting each cowlick and spot on my head so it was all buzzed even.
Then he told me I was rocking the punk rock girl look. And he said I looked great and gave me a kiss.
I handled it better than I expected, but I was still just nervous about it. It was just us, sitting at home, early on a Saturday evening.
I NEEDED to get out of the house. So we did.
First... I was in the bathroom. Talk about makeup! I think I used three different eye shadow colors to get it, plus the eyeliner, mascara and everything else. Had to match the earrings, glasses, necklace.... find it all to match and work together.
I figured that if I was doing this, I needed to do it. If I could handle the most extreme of this, going out bald, especially within hours of shaving it, then I could do the wigs, the turbans, the wraps, the hats or whatever else. I could do it. I just had to get past the bald part first.
HOLY SHIT. Was I doing this???
Um, going from hair to no hair on a chilly night in early March?? COLD! Maybe a hat might be necessary when I'm out and about just for that part.
But I did it. I really faced my biggest fear of this whole thing and got past it.
We went to Bertucci's for dinner. I was so nervous walking in, with all the people waiting for tables. There was a high-top table over in the bar area that we headed over to. And then one of the bartenders walked by us, someone I know. I think it took her a second to realize it was me, but she gave me a big hug and said I looked great.
She popped over after that and I told her that I had just shaved it an hour or so earlier. I was still trying to rock the bald look. She told me I was rocking it and looked great. That really helped.
I still felt like a few people were giving me looks from around the bar. That was a little tough. Hard to be judged, even more considering why I went bald.
With WAY too many years between now and when I graduated high school, there isn't a whole lot that I actually remember at this point. After 3 years of Italian class, one of the few things I can say in Italian is "I studied Italian for 3 years in high school". Just don't ask me how to spell all of it out!
One thing I do remember is something from the business classes I took. Ms. Deacon. And I think she might be a high school principle somewhere at this point. Anyway... Ms. Deacon. She always used to say "Fake it 'til ya make it!" And I've believed in that for years.
I knew that I needed to have confidence in myself and OWN the bald look. I didn't feel it or believe it last night, and I still don't really, but don't tell that to the people who were around me the past 24+ hours. I was faking that shit so I could do my best to hopefully believe it.
Last night, after Bertucci's, Jim needed something at the tool store, I had to return something I bought near there and then we stopped at Target at the mall to see what they had for laptop bags for him. And I was out and about in my new bald look. Doing my best to own it.
It was scary. I won't lie. And now and again, I would forget, then catch my reflection. Like when we were leaving Target and walking towards the big glass windows. Then I saw me and my reflection. Oh yeah, I have no hair. Maybe that's why that lady was just giving me a weird look.
I forgot again this morning when I got up, until I saw my face in the bathroom mirror. And again when I saw my shadow. I think it might take a while to remember, for the bald look to be "normal" for me. But I still miss my hair.
Today Jim wanted to head into Cambridge to the "geek" store to see what they had for laptop bags (MicroCenter). Well, if ever there was a place that I could fit in with the bald look other than the chemo infusion room... I'm thinking Cambridge is that place. So I asked if I could go for the ride with him, as much as I HATE that store and friggin parking lot.
Big purple glasses, big silver earrings, lots of pink and purple eyeshadow, lipstick and gloss, big bold clunky rings and necklace.... I was ready to go.
Today was easier than last night was. I felt more comfortable with it.
Jim laughed and said, "all that with all the wigs and hats and here you are doing the bald thing?" But he understood that I needed to handle the most extreme of all the options to do any of them (and chemo brain? Couldn't find the word extreme or anything like it when I was trying to explain it to Jim. Good thing he got it! Maybe that's why I feel like I've used the word extreme a million times... almost like a new word for me today!)
But I'm proud of myself for doing it. I needed to do this. I needed to take the control of it, and just deal with it. No waiting. No checking the pillow case each morning anymore to see if its time, if the clumps are coming out. NO! That part is done. I'm bald. That's that.
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Other crap? Damn, I feel like I've been writing forever and I'm exhausted right now but I haven't written in a week!
Okay... the YMCA.
Going there tomorrow. A Y near me had a program specific for cardiac patients, and has expanded for people with other medical issues. Starting tomorrow, people going through cancer treatments. The trainers are specifically trained to work with people going through treatments to best serve their needs.
I SO need this. I need to get exercise and structure back into my life and this will be huge! I'm REALLY looking forward to it. I'm not joining the Y, just doing the program. First, its about 25-30 minutes from me and second, its about $65/month. For a 1/2 hour away? I don't think so. I'll do the Monday thing with the trainer and go from there.
But I see the plastic surgeon on Friday and my fingers are crossed that she'll approve me getting lightly back to kickboxing. My oncologist already approved it, if I'm careful. I'm going to go to the morning classes, so less germs (instead of after kids, then 2 or 3 more classes in the evenings), and I'm getting new gloves too.
I know the trainers at kickboxing will be watching me... they already replied to my messages that they will be watching me like a hawk. Saving those messages for my doctor so she can see and maybe that will help her say yes! I need this too, more for mental sanity than anything else.
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One of the hardest things lately has been feeling like I'm not part of my own life anymore. I did SO much before. I was organizing things all the time, to the point that friends would just say, "SO what do you have us doing this time Julie?" That was who I was. Who I still want to be.
I know that I can't do everything I used to do. I want to! But I have to be safe and watch germs, plus I need to watch my energy level as well. And can I even physically handle certain things anymore. Right now I certainly couldn't do Trapeze School! Even though I have a class I already paid for.
A year ago, I did 3 races, 3 weekends in a row. There were 4 of us. I thought it was cool when I found it and had wanted to do the series for a couple of years. The race series said it was easy as 3, 4, 5. The races were 3 miles, 4 miles and 5 miles.
Today was the 4 mile race, which was the BEST post race party. Last year, that was the day that we decided on a destination half marathon... my Puerto Rico trip in November.
Today for that race? My 3 friends who I went to that race with last year were there today. Two ran and one was supporting them. One said something to me this past week that they were going and I saw their pictures today on facebook from the race.
It looked like they had fun and that's great! I want them to have fun. It just sucks thinking that was my life a year ago. And I think they just didn't even think to ask me if I wanted to or even could go. No one asked.
Do I sound like a 5 year old? Feeling bad about feeling left out?
I am SO grateful for all of the incredible support that I have in my life. People and places I never would have thought have been incredible. Some friendships have gotten so much stronger with this too. I cherish all of that and everyone with that.
I was always an organizer, a planner. I have a friggin online group that I ORGANIZED. I did 7 sessions of the Couch to 5K running group. I planned all sorts of crazy things, trying to just try new things and get out there.
When I was planning, doing, I saw so many of my friends so often. I'm lucky that I have a few people who specifically ask what days I'm free or tell me what works for them, if that works for me so we can get together. Some come over to hang out or visit or go out for lunch or whatever. A few have answered my "call" (email request I sent to about 10 friends), asking for company some nights.
Jim needs to keep his things in his life and have his stress relief. I'm home. I leave for appointments during the day. And he works. Then 3 nights a week he goes to his classes at the gym. It gets lonely.
Anyway, it was nice that a couple of friends responded to my email. A friend who works from home came over a couple of afternoons last week which was GREAT and really meant so much to me. The company was great.
But its hard. Going from planning all these things to not really hearing from some people anymore.
I know that everyone has their own lives and their own things. I get that. Life is busy. Tons on the plate.
Another poor me moment that hit today after seeing some pictures that reminded me of my life a year ago... a life I feel like I'm not a part of anymore. And that's just the part that sucks.
BUT!!
I'm not focusing on that. This blog is for venting more than anything else. I need to get this shit out of my head! If I don't, I will focus on it. And I refuse to do that. So I'm focusing on the positives in my life.
I got over my biggest fear of this whole thing and went out in public BALD! I did that and made it through, and now I know that I can do anything else that comes up in this process.
I have an incredible boyfriend who is so great to me, even when I want to strangle him at times. No one is perfect, right? :) (and I'm pretty sure he has no idea what I write here, unless I specifically read it to him, but he knows when I want to strangle him and I know when he wants to strangle me.)
I'm half way through the first chemo cocktail. 25% done with chemo overall.
I have wonderful people in my life and an amazing support system.
I'm working hard at getting healthy and I WILL get there.
Oh... funny note. I was reading Jim a recipe I found online... me who does NOT cook. He said, "Oh, that reminds me, I have to pay my homeowners insurance." Sadly, he was not kidding. Thinking of me cooking reminded him he needs to pay the homeowners insurance. Nice, huh???
Anything else to toss in???
My picture. Since she posted it on her photography facebook page, I'll post that one here... from the "girly" photo shoot. One of many. :) And... MAYBE more to follow. Details later when I know more. But this might happen again for me.
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