Saturday, November 29, 2014

Well, here I am almost halfway through the first type of chemo I have to take. I'm still alive - yay! Other than that fact, life as I know it is pretty darned different.

In some ways chemo hasn't been as rough as I expected it to be, but in other ways it's been worse than expected. I'm learning in many ways that I just can't 'expect' or count on things being one way or the other! I expected to be dealing with lots of nausea. There has been some, to be sure, but not nearly as much as I expected. What I've had more of is just an unsettled digestive system, and pretty much a total lack of appetite. Not nearly as bad as I expected. On the other end of the spectrum is the fatigue. I didn't expect to be hit so hard so fast, but that's how it's been. Makes me really scared for how that aspect will be after the next two treatments (and the twelve to come of the 2nd round of chemo).

Other surprises - the two chemo treatments I received so far did not affect me the same way. I really thought I'd be facing the same ole, same ole each time (when receiving the same chemo drug), just probably a bit worse with each subsequent treatment. Nope, treatment #1 was totally different in effect from #2. Wonder what #3 will be like? I'll know soon. Also unexpected was how fast I'd start losing hair. Two treatments down and I'm all but bald. That was fast!

I think the biggest shocker for me is the one thing that shouldn't have surprised me. It's the fact that I have zero ability to set my mind right and just *power through* this. Chemo totally and completely dictates what I can and cannot do. It is large and in charge, and I just have to deal with it. I am so used to just getting my stubborn on and being able to push aside (most) any challenge. Chemo laughs at that, and then knocks you on your butt.

This round of chemo will end with my 4th treatment on December 16th. Then I get a 3 week break before I start the next type of chemo the first of the year and running through the end of March. Then I'll be looking at a mastectomy, and then radiation, unless the plan changes sometime mid treatments. Presuming no changes, I guess I'll be finished with this mess sometime mid-summer. Not one to wish my life away - especially now - but I must admit I will be glad to get to the end of this season in my life.

So far I've been continuing to work as much as I can, which admittedly has been a lot less than I thought I was going to be able to do. Work has been excellent in letting me work from home a lot, and this will probably be more and more as I progress through treatment. I won't be surprised if (when?) the time comes that I just have to go out on disability. I know that if not before, it will happen when I have to have the mastectomy.

So...that's where I am in this. My family has been wonderful, my co-workers have been very supportive, my church family has been great. Being loved is awesome. With any luck, this journey will lead me back to incredible health as well.
Share This Post With Others
Member Comments About This Blog Post
  • KLONG8
    Oh, Linda. I just got caught up with you and am so sorry to hear of this battle. And want you to know you have a family here at SP sending you love and prayers.
    2274 days ago
    2293 days ago
    You are a warrior
    2321 days ago
    2322 days ago
    That is wonderful that you have a great support system. Being strong is huge and having a positive attitude makes a big difference. My Aunt was very strong willed and that is what helped her.
    2326 days ago
    I'm glad to hear your friends and family have your back during this difficult time, and it's great that work is flexible so you can focus on healing. Thank you for updating. I've been thinking of you. Take care!
    2326 days ago
    Linda, your determination and positive outlook in the midst of this tough journey is amazing. Hang in there! I know that there is nothing easy about this journey for you and I am glad that you have supportive family, friends and co-workers. I wish that I lived closer so that I could help you out too. emoticon
    2327 days ago
  • SUZANNE65203
    Linda: I am glad to hear how you are doing which sounds like about as good as can be expected. While you have had to surrender control and cannot power through as usual, I can still hear your strong positive attitude in what you wrote and that makes me believe you are going to get through this just fine. You are in my prayers!
    2327 days ago

    I have been thinking of you a lot and wondering how you have been doing. Since I had Taxol first and then AC, I wasn't sure how quickly the AC would knock you down. It knocked me down flat with #1 and I was down for the count. Taxol is usually easier on most people and I hope it will be the same for you when you get there. Some people start growing hair a little too while on Taxol. I didn't lose my hair completely until the AC part....AC is just rough pretty much all round.

    I'm glad the nausea isn't too bad for you. It was the thing I couldn't shake while on wasn't nearly as bad on Taxol and I didn't need meds every single day for it with Taxol. Some people don't have it at all on Taxol. Since it hasn't been too bad for you on AC, the chances are really good that you may not need much medicine for it on Taxol. The anti-nausea meds cause so many SE's on their own; it would be great for you if you don't need them much.

    Since I had my AC in Dec. and Jan., I joke that I hibernated those two months last winter. Sleep is your friend. Do it all you want! Your body is working SO HARD right now just trying to maintain itself. So much is happening on the inside right now....all the normal cells that are getting killed off are trying to rejuvenate themselves. It's A LOT of work. No wonder we are so fatigued during chemo!

    Isn't that fatigue amazing? It's really different from normal tiredness.

    Can you feel your lump yourself? Has it gotten any smaller? With Taxol, mine shrunk about 50% the first six weeks and then just seemed to sit there. With AC, it shrunk more after #1 and then seemed to get a little bigger. With AC#2, it really shrunk and I couldn't feel it after that. At the time of the surgery, there was no cancer found in my breast. Unfortunately, I still had a small amount of cancer left in two nodes when they did the ALND so I didn't get a pCR. I hope you get a pCR. It will be absolutely wonderful if you do. I felt the AC was much better at killing off the cancer than the taxol was. I even asked my MO if I could have a 5th infusion of it! She, of course, said no. It's too hard on the heart.

    I really get what you are talking about with not being able to power through things. That is so true. I still feel that way today....almost a year later. My strength is almost back to normal, but if I overdo it, I sill pay for it with fatigue and end up having to sleep. At this point, I can do pretty much all the things I used to do but I just have to be more mindful of not overdoing it. I figure my number one priority for the next four years is to not get cancer....if I wear myself out, I don't give my body the chance to fight cancer as well, so I'm more interested in moderation these days.

    Do you know if you will be getting an ALND? They changed the guidelines last March right after I had mine so you may not have to get one. If they tell you that you don't need one, be very glad! It is the one thing that has impacted what I can do. I don't have lymphedema, but I have a very high lifetime risk of getting it. That risk has made me leery of doing the self-supported bike ride around the US that my husband and I had planned on doing right before I got diagnosed. I'm worried that riding 50-75 miles a day would put too much pressure on my arm. I'm looking into recumbent bikes for that reason (we sold the tandem that we used to have that is pictured on my SparkPage).

    I'm delighted you are getting so much support from family, work and church. That outpouring of love is so helpful. I was wondering how things were going with meal prep and stuff. Do your boys do that for you? I had zero appetite too, so the last thing I wanted to do was cook. It's hard to explain to others how food tastes like cardboard. That part was pretty much the same with both Taxol and AC, but I think the digestion problems were worse with AC. Again, it's a little hard to compare because we did them in a different order and it's hard to know which things got worse because it was cumulative.

    I agree, it some ways it's not nearly bad as expected. I thought I would be hugging the toilet throwing up all the time and I only threw up once. It was my own fault. I didn't take my anti-nausea med on schedule about three days after one of the AC treatments because I slept through it. That taught me that I needed to set an alarm to take it on schedule for the first few days.

    Did your head hurt as the hair fell out? That's kind of weird too. It's the things people don't think about that can be so annoying! It actually feels better when it's gone and it's sooo easy to take care of.

    Are you a member of the "must have kleenex everywhere you go club" yet? Like I told you before, it was the lack of nose hairs and eyelashes that bothered me the most...drip...drip....drip! Fortunately, those hairs come back first and they came back very quickly.

    This time next year, chemo and the rest will be a dimming memory for you. For me, the onset of cold weather brought back a lot of memories of chemo because things started getting bad for me about the same time the weather got cold. Thanksgiving was such a contrast between this year and last year. Last year, I couldn't go near the kitchen and my husband did all the cooking. (My biggest challenge was to just stay out of the way.) This year, I happily did all the cooking and was so grateful to be able to actually taste the food at our family get together. Hopefully, this time next year, you will be enjoying cooking and eating like never before. BTW, I think taste buds also come back very quickly.

    It seems like the things that go fast with chmeo also come back fast too....except for hair on the head....that felt like it took FOREVER to even get peach fuzz....but it does come back!

    Is you next infusion on Tuesday? That's great you will be getting your chemo break over Christmas and New Years. Chances are that you will be feeling somewhat reasonable for both of those holidays.

    I'm really hoping that you find the Taxol much easier when you get to it. People tend get into a rhythm with that one going every week.

    I know I've said this to you before, but I just want to say again....beware of those steroid crashes. I thought I was just going through bouts of depression or fear about cancer until I realized they were happening like clockwork about 2-3 days after each infusion. I was sobbing on the floor in a puddle each time until I FINALLY figured out it was me coming off the steroids each time. Ativan became my friend on those days.

    I'm really sorry you are having to deal with all this. It's a lot harder than people realize, but it is all doable. It was a HUGE lesson in gratitude for me and continues to be so. So many things that I used to take for granted (like combing my hair or tasting food or being able to wake up and easily walk to the bathroom), I don't do any more. Just being able to go shopping and not need to take a nap afterward feels like a gift. I continue to be grateful every day now for the small things.

    One last thing.... have you watched any YouTube videos on makeup or scarf tying? When I lost my hair, I spent several hours watching them to figure out about eyebrow application etc. There are some wonderful ones out there. If you are interested, I think I bookmarked some of them and can send you some links.

    Okay...that's enough questions and rambling from the peanut gallery. I just can't tell you how often I have thought of you over the past weeks and wondered how you were holding up. It was wonderful hearing from you.


    2327 days ago
    I'm so glad to hear from you. You are in our thoughts and prayers.
    2328 days ago
  • Add Your Comment to the Blog Post

    Log in to post a comment

    Disclaimer: Weight loss results will vary from person to person. No individual result should be seen as a typical result of following the SparkPeople program.