New-ropathy

I guess I thought I’d be the woman who doesn’t get all the common chemo side effects. Everyone told me I would “do so well” with chemo – I’m young, in good shape, have a positive attitude, and so on and so forth. Well I’ve learned that being young, in good shape, and so on and so forth does not preclude you from feeling common chemo side effects, no matter what anybody tells you.

My current battle is with peripheral neuropathy, which has manifested in me as a strange, pins-and-needles-like sensation in my fingertips and, less prominently, the soles of my feet. It’s not painful, just annoying because I feel it everytime I type, hold a pen, or do anything else that normal people do several times a day with their fingers. Everything I read says it’s reversible, but I also worry sometimes that it won’t ever go away. It’s been pretty constant since my second Taxol.

And while we’re counting treatments, I want to proclaim that I have JUST ONE LEFT! September 1st marks my last infusion and I am so, so, so ready to be there. I’ve heard from a lot of women that reaching the end of treatment is sometimes hard, and I can understand why that would be – you’ve spent several months being monitored closely by a medical team, you’ve endured countless side effects and emotions, you’ve received well-wishes and extra love and care from family and friends and then… bam! You’re not really a cancer patient anymore. You’re a survivor… supposedly… until you get a recurrence… but that’s a whole other story.

While I see the sadness that can come along with ending treatment, I also think I’ll be ecstatic. First and foremost, my hair will start growing back! I’ll have normal work hours, be around most weekends to hang out with friends, avoid being pricked and prodded every week, and I’ll be able to schedule my final reconstruction surgeries and emerge in 2012 with new boobies and a new outlook on life. So close…

Insomnia and other Side Effects

It’s an off-chemo week and yet I am still unable to sleep tonight, 2am on a Saturday. Sigh. Could be that I took two Compazine today – let me explain.

I have a mild case of oral thrush – basically a mouth yeast infection. Yeah, yeah, it sounds totally gross but it’s a common occurrence for people on chemo and mine has just meant my mouth feels slimy and I have some white stuff on my tongue. My doctor prescribed these big white tablets that I have to dissolve in my mouth for 15-30 minutes, and while they’ve been working, they made me a bit nauseous. At first, I took Ativan to help with the nausea – though my doctor prescribed it initially for my anxiety, it also helps nausea. Then I trolled the interwebs and learned all about Ativan addiction and got scared and switched to Compazine instead, a drug I was originally prescribed for nausea in the days after my chemo.

Every drug has a side effect, I guess (in fact, one of Compazine’s side effects as listed on the website I linked to is “fine, worm-like tongue movements… whatever that means). Hard to accept because up until now in my life the only drugs I’d ever really taken were Tylenol and here and there an antibiotic.

I’m also coming to terms with the fact that “bald from chemo” in my case does not mean completely, Samuel L. Jackson style bald. It means bald with delicate, dark peach fuzz all over my head. This is almost harder than just being completely bald, because unless I keep these rogue hairs always trimmed down, I can’t make it look like I meant to do this to my head. Did others have this kind of baldness?

My confidence is building everyday and I did have fun wearing a wig to work on Friday, but it might be a couple days before I post a picture here.

It’s the drugs

Welp, it’s 3:40am on a Saturday night and I am wide awake. I assume this is a side effect of the anti-nausea steroids, but who can be sure? While I appreciate not being nauseous, I’m really jonesing for some sleep right about now.

This first round of AC (Adriamycin and Cytoxan) hasn’t been terrible. I have an appetite, I can carry on conversations, yesterday I spent a few glorious hours just lounging in my parents’ backyard by the pool with neighbors and friends – the chemo really hasn’t kept me from doing things I want to do. But it does make me feel a little off – a little bit not myself and a little bit mixed up in the head. There were a couple hours yesterday when I just couldn’t concentrate on anything. I couldn’t play Words with Friends, I couldn’t watch TV or read, I just kind of wandered around in a weird haze trying to collect my thoughts and feel normal.

I’m someone who fights the urge to use Tylenol when I have a headache, and suddenly my body is being overrun with all kinds of drugs that I don’t want there – it just doesn’t make me feel very good.

I’m trying to hang my hat on the fact that these side effects won’t be with me the majority of my days, but it’s hard to see how I can live through 7 more rounds of this toxic stuff.

On another drug-related note, I think the Neulasta (shot to keep my white blood cell counts high) is making my jaw hurt. Grrr.

 

Chemo infusion 1 down

Thank you all for your supportive comments on my last few posts. I’ve said it before and I’ll say it again – know I have a vast support system of local friends, family, and people who I hardly know throughout the world really helps me through this process!

As you can see from my pictures (go WordPress for allowing you to instantly post pictures from your iPhone!), yesterday was my first chemo infusion. I was pretty freaked out all morning just trying to imagine what it would be like. There was one point in the infusion room when my parents stepped out to get something and I was all alone and I just wanted to cry. But seeing the rest of the people in the room – men, women, some bald, some not – all were calm and helped me to feel calm as well. If they’re not being babies, I don’t have to be a baby either! I certainly was the youngest one there, though.

It took a while between them having to draw my blood, get the med orders from my onco, make sure everything was covered by insurance, start me on some preliminary steriods and anti-nausea drugs, and then all of a sudden, the nurse was over with a syringe of bright red Adriamycin and a bag of Cytoxan. The full course of chemo took about an hour and 15 minutes, and with all the pre- and post-acivities I’d say I was there for a total of 5 hours. Not terrible – and the seats are very comfy and heated!

The rest of the day wasn’t terrible. I felt find for about 2 hours and kept trying to do what people advised me to do – eat frequent, small, nutritious snacks such as veggies and nuts, and drink lots of water. My Nalgene bottle is my new best friend.

Then for the rest of the afternoon I felt a bit “off”. Can’t really describe it in one word – my stomach was a teeny bit queasy and I had a slight headache. It may have also been the fact that it was 90 degrees and soupy in DC, but I just didn’t feel 100%. Not terrible, just not 100%. Then I ended up just feeling really tired when it got dark and I wanted to sleep a lot, so I did.

Today is Friday and I’m off work. After a good night’s sleep, I woke up and took my prescribed steroids and ate a big nutritious breakfast including a smoothie recommended by the naturopathic physician. I feel fine. Again, a little bit off – but I’m beginning to think it’s in my head. Like I expected to feel bad so I do feel bad, a little bit. But I plan on going on a bike ride with my frozen baby daddy right now to keep my energy up, and I’ve slathered on the sunscreen so I don’t get burnt, and for the rest of the day I plan to do a little work from home, relax, and get my Neulasta shot to put my bone marrow into overdrive producing white blood cells.

Neulasta is supposed to cause achy bone pain, so we’ll see how that goes. From what I hear, it’s noticeable, but not anything that can’t be controlled by Tylenol and not anything that would prevent me from doing normal activities.

To be perfectly honest, I’d take pain over nausea anyday. Luckily, I don’t feel much nausea, though!

I’m 1/8 done with my chemo!!! The Phillies won yesterday and the night before in 19-inning craziness! It’s a good day.

Today I am feeling…

When I was a teen, there were teen “diary” sites like Xanga where you could have a little emoticon that showed your feeling each time you wrote. Well, if I had that ability on WordPress, today I’d have that and it would say “overwhelmed”.

Yesterday, I had what they call a port placed in my chest to make it easier and safer for me to receive my chemo infusions. Basically a small pad goes under my skin and it hooks into one of my major veins, meaning the nurses can easily just stick a needle in this pad and administer the drugs straight to this vein, rather than having to prick my hand or arm every time and risking damage to the small veins there from the toxic chemo drugs.

The placement procedure was fine – I was prepped like I was for all other surgeries (get nekkid, take off all jewelry, get an IV placed, wait around for a while in the pre-surgery room, etc.) but for this one I was fully cognizant as they took me back to the room, and prepped me. They need to use an ultrasound to place the port, so I was lying on my back and they draped my body so that just a square of my chest was exposed, and there was a big X-ray machine hanging above me and a lot of techs scrambling around. I knew I wasn’t getting general anesthesia, but I was getting happy meds so I kept waiting for them to start pumping that wonderful stuff into me. Finally, before the surgeon came into the room, they did, and I felt the normal lightheaded, heart-slowing-down feeling that I enjoyed for all my other surgeries. I honestly don’t remember much after that – I think I napped. I felt nothing, and then there was a nurse peeking into my sterile “tent” telling me I was done. An hour later I got to go home, and the rest of the day I slept.

That night, the port hurt a bit – nothing unbearable but a sore in my lower neck like I had whiplash and a slight searing pain where I imagine they cut me open to put the port in (I can’t see because it’s all covered in gauze).

My skin was also a bit red, and I started freaking out that I had an infection. That’s what started today’s overwhelmed feeling. The next thing that exacerbated it was that I spoke on the phone to a young woman who had her chemo at GWU. I got her name from the local YSC affiliate, while I was doing research, because I wanted to just see what other people’s experiences were like. Well it was all going fine and good and we were talking about wigs, what to do during infusions, etc., but I started asking her more about her experience and found out that she had been diagnosed at 28 and they originally told her she was Stage 2 – larger tumor but no positive nodes. Great! Not so great. After her surgery she got a PET scan and it revealed she was really stage 4, with mets to her lungs.

Womp, womp, indeed. Just when you think you are out of the woods with a great prognosis, you hear a story like this and all the fears of terrible metastatic disease and dying come flooding back. I know it is rare for this situation to occur, and it’s possible there were more differences in our experiences than I talked to her about, but still. No positive nodes and Stage 4. That’s truly being dealt the short straw.

Then today I went to a clinic at the hospital at the urging of my surgeon. It consisted of short visits with a physical therapist, massage therapist, Reiki specialist, and a naturopathic physician. While these women were very kind and I appreciated their input (I especially liked the Reiki, though I went in thinking it wouldn’t do much), it also put so many things in my head that I have to remember before starting chemo… which is… oh, right, tomorrow.

Prevent lymphedema. Massage scar tissue daily. Use Vitamin E. Remember to breathe. Rub your arm this way to encourage fluid to flow through lymph nodes. Eat this vitamin. Don’t take that vitamin. Eat lots of green vegetables. Eat protein. Limit carbs. Make this smoothie if you don’t feel like eating. Freeze meals at the beginning of the week.

And of course on top of all that I get home and had my own laundry list from the oncologist of drugs I have to take and when and items I should buy to be prepared for side effects (Colace, soft toothbrush, biotene, etc.).

MY WORD. So you can see how I’d be overwhelmed. I’m a little scared that I can’t do this all. Sure, my parents will be here for most infusions, but they can’t live here for the next 3 months and there will be times when I’m on my own and the boyfriend is at work. How the heck do I remember all of this and not make some fatal mistake?