Burning Relief

    YESSS! My hands are no longer on FIRE. That’s the good news. While still a little sensitive to heat, there is no question that this round was way less destructive to my nerve tissue. This is an example of why it is really important to tell your health care providers exactly what is going on with you not just during chemotherapy, but always.
Let’s start with this example. My infusion days always start with someone on the “infusion” team coming to collect me from the waiting area to take me to be weighed and get my lab work started (i.e. set up the IV and draw some blood to check my blood cell & platelet counts).  At this point, they always ask, “How are you doing today?” By that time on my last infusion day, as I had mentioned, my fingers had stopped burning, but they were peeling.
At least half the time that I go in for these, er, lovely treatments, I also see either my chemo-oncologist, or her physicians assistant. So once I’d explained my situation to my “greeting” nurses, they sent me into an examination room where, minutes later my doctor, and apparently half of her entire staff, knew what everyone who’d read my last blog knew. My hands had felt like they were on fire for most of the previous 2 weeks.
And . . . they had a plan. Evidently, I’m a little different, but not completely unique (dang, back into a boring, previously documented category with me). But they KNEW what to do!
My doctor informed the nursing staff that I was to be provided with ice packs to hold in my hands while the Taxol was being administered into the drip feed. My first thought was, “Hold on a second, my hands didn’t burn while I was getting treatment,” but before I could even express that, my doctor explained that holding ice DURING the treatment would lower circulation in my hands and diminish the level of Taxol that might travel into my hands and up my fingers. Ooohhh.
So that’s what we did, I held ice packs while the Taxol ran and I am here to testify that this was a successful ploy. Thank you, thank you very much, I accept your congratulations.
However, plotting and treating these devious little chemo-side-effects is like playing a game of Wack-A-Mole. The discouraging part is that just like Wack-A-Mole the game, there is no set pattern to learn or know in advance. We patients are given unending lists of the the most common side effects, and frequently have  advanced treatment for them (I’ve talked about how grateful I am for the anti-nausea drugs that come in both my drips, and in pills to be taken as needed, so I’m not too sick, or spewing), but many other effects need to show up in outliers such as myself before anything can be done about them. Another nearly equally discouraging factor is that I got entered into this version of Wack-A-Mole without having been given a large, weighty baton to smack things with.
This current week’s notable attention grabbers include, hot and cold flashes with no discernible fever, increased joint and muscle pain (which I have pain killers for that I’m wary of using), full body restlessness, mental restlessness, restless leg syndrome, and the new kids on the block, lower back ache that pulses, disappears, and returns, the skin on my face itches but is sensitive so actually scratching it hurts, so I rub it with my finger-tips, but they’re peeling so it scratches, and improved fatigue, as in bigger, better, stronger fatigue. I’m wanting that baton, but I probably wouldn’t be able to lift it anyway.
What I now know from so many of my experiences in the last 3 months is that when I tell my Peeps at the cancer center what I’ve been feeling, they will collectively address everything they can and much of what I’ve just described will be minimized or eradicated. This greatly improves my faith in this particular process. I, who embarked on this dubious course with trepidation and many misgivings, truly feel that vast progress in cancer treatment has been made.
What I can honestly say with positive sincerity is that this week I feel like I’d rather expected to feel like back when I first started chemotherapy, but I haven’t felt like this until NOW. No one can tell me it’s a bad thing. Even though I feel as if I’ve gone a few rounds with the flu AND a professional boxer at this juncture, I thought I’d be this incapacitated everyday from mid-November through March. Here it was only a quarter this bad for 4 or 5 days out of 14 from then until now, and will only be for perhap 50 to 60% of the remaining time after 2 more infusions. This should mean that I will be done with the worst side effects by the 1st weekend in March! I’m averaging above 50% nearly normal days! I’m stoked! Honest.
As I’ve gotten more comfortable talking about chemo issues, I’ve also found myself asking a few questions regarding other aspects of my health while chatting with my “team.” Turns out there are a number of things that I thought were just regular aspects of aging that I thought I’d just have to put up with, that can be alleviated with care or products or prescriptions. Normal joint aches, age spots, hair loss, unwanted hair, digestion issues, skin problems. My goodness, we don’t any of us have to soldier through so many things just because we “expect” to age in discomfort. Okay, Health Insurance can be a big impediment, but if you have any insurance, for heaven’s sake, go ask a doctor. If you are blessed enough to be alive, live better. Do it now. The times they are a changing, but you can still act before all insurance is stripped and replaced with nothing at all.
Good Luck! Really.

# I’m Not Looking Forward to This

On the brink of Infusion number 6. # I’m not looking forward to this.

Yes, I know, I didn’t write last week. There were two reasons for that. A) Life is still going on, and I’m planning my daughter’s Bat Mitzvah, and I see no reason not to hold the press for a mitzvah in the middle of my chemo, and B) who wants to type when their fingers are on fire?
Personally, I’d give myself a pass for B) alone. Oh yeah, I already did.
And yeah, you read that right. My fingers were on fire, or at least it FELT like they were. Give me a second here, I’m working really hard on making some of this sound funny.
Allow me to better detail the sensation first. The entire length of my thumbs and index fingers were inflamed, slightly swollen, red in appearance, and burning from the inside. Of lesser impact, it was only the tips of the rest of my fingers that burned, and all of this fluctuated between mere discomfort and “ow, I hate this.” I could not actually hold my tea cups for three days, as the warm cups felt like molten iron (thank god for those little finger rings on cups and mugs, and for the fact that I could use the heels of my hands for a bit of balance), and, even when dropping the water temperature to lukewarm when doing dishes, it felt like I was scalding my hands in boiling water.
I survived by dropping approximately 3 ibuprofen a day. It helped a great deal, although my dishwashing duties suffered (or should I say, my husband suffered as I left more for him to do).
The burning pain gradually receded to tingling and numbness, which I’d been informed was likely. Let me clarify this for you. I’d been well prepared for tingling and numbness in my hands and feet to occur as a side effect of either my chemo-therapy or the Nulasta shots that follow, but, as you may imagine, by the time I got to just the tingling I was so grateful, that I wouldn’t have thought to consider either it or numbness a negative side effect. I’m thinking more along the lines of a blessing.
Everybody responds a little differently. On this one I’m supposing that I’m an outlier. Yay! Don’t we all love to imagine that we are unique. Here is my proof. Yay! I’m so unique that my side effects are not on the “Chemo Watch List” radar. Until now. You read it here first.
Are ‘after side effects’ still considered to be side effects? Most likely. So, after the burning, and once the tingling actually became numbness, what happened?
Tomorrow is my next infusion and as of today my finger tips and thumbs are numb. No big deal, but this next part is of more concern to me. My index fingers and my thumbs are visibly peeling. I am shedding bits of hard, dry skin, and the tips of all my other fingers are whitening to peel, and the palms of my hands are off color (I’d say orange-ish to white edged). Say what?! This my friends is a first for me. I am still acquiring notable side effects the day before my next encounter of the chemical variety.
Oh poop. Well, there are only 3 more to go, right?
Before I even ask, “How much worse can it get?” I will refer to my dear friend Amy who is going through an even rockier treatment than me even as I type, who told me two months ago that when she first experienced “tingling and numbness” after one of her infusions (and thought, ‘I’d hate for this to go on always’) she found that she didn’t experience it the next time. So that could be part of my story too. Right? We just don’t know.
Amy’s story and optimism are more valuable to me than anything I can conjure from my own experience. She was diagnosed before me with a different form of this beast, and without her, I would feel a whole world of different from the Chem-Girl who writes this. For one thing, I would be more scared, and for another, I’d be more angry. We compare notes regularly; Amy’s voice and attitude keep me calm.
Together we smile at each other over the phone and say, “Oh well.” and, “We just don’t know yet.”
Together, we just want to get back to “normal.” To where we can accept any invitation without looking at the calendar to check which side of an infusion the event falls on, and to where we can walk everyday, and at the same pace as we did before. Everything is a little more spaced out, and everything is a little slower for us now. This is temporary. This is just for now.
Just for now I have no hair. Just for now I can’t travel too far. Just for now my plans are limited. Just for now I need to be more careful with myself. Just for now my fingers are peeling.
So just for now, I’m happy to follow instructions and go on. Going on, after all, is the point. And I have a Bat Mitzvah to plan.

Ten Great Things About Chemo-Therapy

I can tell you right now, my close friends who are reading this are thinking, “This will be just oozing with sarcasm.” Don’t be jumping to any hasty conclusions my friends. I’ve sworn off sarcasm due to it’s exceedingly unhealthy affect on my soul (and likely my cancer). Sarcasm is definitely off limits, although I make no such promises regarding wryness or irony.
Finding myself at the end of a cycle, once again I’m surprised at my own attitude towards this treatment. It isn’t that I don’t suffer from all the things I’ve already whined about; there are continued unpleasant effects, and they are growing proportionately with each infusion. However, there are a few pretty nice counterpoints to the side effects, which in and of themselves are actually great counters to the insult of these nasty chemicals.
It should be duly noted that I would not have noticed a number of these Great Things About Chemo if it weren’t for friends and acquaintances continued exclamations of, “You look GREAT!” Know that I’m pleased to hear this, and a little flattered. It isn’t like I don’t put my efforts into it. Afterall, I don’t WANT to look sickly. Yet the fact of the matter is, most days I really don’t look sick. And, I may not even look sick at the end of this (we’ll see, I expect I’ll have to roll with that if I get there). However, there is this little recoil in my brain every time I hear that I look great that makes me wonder, does this mean some people think the Chemo isn’t affecting me at all?
Well, probably that isn’t the point. Yet what really fascinates me about the continued exclamations is what makes it possible that I might look great.
For one thing, it’s the hair. #One Great Thing About Chemo actually turns out to be about the hair factor. Once you get over your chagrin that you’ve been robbed of your hair, you can actually make a great friend of your wig. Let’s face it, all wigs hair is better behaved than anyone’s natural hair. Wig hair is manufactured and styled to look fabulous. I tug that puppy on and I look freshly coiffed in six seconds flat. Boom. And it stays that way. That’s Great!
Then there’s my skin. #2nd Great Thing About Chemo is the skin. Okay, maybe this one is especially for people with normally oily skin, and given that allowance for me, even my skin is a whole lot drier from the chemo. At first the dryness was horribly alarming. All my smile lines became actual grooves; ditto for frown lines, worry lines, all those lines. But a good moisturizer really makes a difference with the lines, and, who knew? I haven’t had a white-head, or a black-head, or a blind-zit since week one of chemo! Sisters, can I get a Woot-Woot? I can’t remember the last time I went a whole week with a clear complexion.
Let’s not over-look the new lack of facial hair. No woman wants to own up to managing unwanted facial hair, but #3rd Great Thing About Chemo is I don’t have any unwanted hair on my face. The total bonus so far is, I do still have the WANTED facial hair, i.e. eyebrows and eyelashes. Although this is a topic to revisit in four weeks or so, I have my concerns on this count.
On to #4th Great Thing About Chemo is giving yourself a make-up allowance. True, chemo has made my complexion a little red some days, but foundation smooths that right over. Can you say “color correction?” Uh-huh, I knew you could. I invested in a good foundation and now I wear it regularly, where as I didn’t before, and, well, no wonder I look GREAT. Or, at least not sick. 🙂
So that covers the appearance aspects of chemo, but wait, there’s more!
The extra time I have in the morning by NOT shampooing and blowing dry is, #5th Great Thing About Chemo; better time management! So far, I have made exceedingly productive use of this time by sleeping a little longer. Don’t pretend you’re not jealous.
Next, money management. #6th Great Thing About Chemo is $avings. All right, I just told you I’m spending more on make-up, but that expenditure is still below “Even-Steven” compared to what I’m not spending on good shampoo, conditioner, anti-frizz cream and hair spray. Let’s not even mention salon spending. I’d like to ask you to just pause for a moment to pity my poor hair-dresser who is surely missing the income from my base-color, high-lights, low-lights, hair-cuts and blow-drys. One or two of those services every three weeks? Poor, dear girl. Sorry honey.
Then there’s the simple ‘lost that annoyance’ factor of the #7th Great Thing About Chemo: I don’t have to shave my legs for any reason. Bam. Enough said.
Oh, and this one has to be really good for me, #8th Great Thing About Chemo, I’m just not so into sugar anymore. Oh, I STILL consume some sugar, but less is good enough, and that there’s a miracle.
I had no idea of just how much I was depriving myself of the next one, but #9th Great Thing About Chemo is I am e-mailing, texting, and calling my brothers and sisters way more than I usually do, and wow, do I feel richer for it! Nothing like a little chemo to make you appreciate your loved ones and feel immensely grateful that they’re there, and you’re here, to communicate with them. It seriously makes you feel the power of love on a whole new level.
Finally, I’ve mentioned this before, but as I feel I didn’t stress it enough, and as it is so very valuable, it bears repeating on this list. #10th Great Thing About Chemo is the clarity you gain regarding what is valuable in life, and what is worth effort, and what is not.
Even if you never have to go through this kind of detour in your life, if my experience can make you ask yourself, “What am I investing most of my time in? Who am I investing most of my energy in? Are the rewards of these investments equal to the expenditure of effort and self, and are they worth the sacrifice of things I am not doing for myself or the people I love most? What is the payback for my concessions? Am I getting rewards that match the award of my personal investment? In short, is what I am doing for other people worth to me what it is to them?” If, overall, your honest appraisal of such a review is positive, your life is well lived, and if not, you may want to give yourself permission to revise your priorities.
Chemotherapy is giving me a clarity for what is most valuable in my life. I have an insight that I lacked six months ago. A good day is priceless. I wish you all innumerable good days.

A Milestone I’ve been looking forward too!

I’m halfway done with the chemical fun!
Okay, this could be worse. I’m not going to lie, it could be better too. What would be really nice would be if this was the end and this was as bad as it got. Who knows? Maybe this is where the elevator stops. My oncologist has been indicating all along that her goal is to balance all my medicines to minimize side effects in order to prevent a real disruption in my normal life, and I must admit that there’s clearly been a great deal of research into formulas intended to over-ride the worst physical reactions to the main event of Chemotherapy. Truly, I have not experienced anything like the stereotypical impression many of us have of nausea and vomiting that once was the hallmark of chemo patients. I’m grateful to live in a barf free zone.
However, it seems to me there is still a little work to be done regarding the side-effects of the anti-side-effects drugs that have been introduced to help out. First, there are the steroids that actually do limit the nausea, but that interrupt your sleep when you are already fatigued. On the bright side, I find that I’m not feeling fatigued when I’m awake in the middle of the night. So there’s that. Not horrific, right? It’s really only when I’m trying to keep my eyes open at my desk at work the next day that I notice the fatigue. Then there is my increasingly unpleasant reaction to the Neulasta shots that follow the main infusion by 24 hours. The Neulasta is given for the all important boosting of white blood cells and platelets which all chemo drugs deplete. It’s really important. Without Neulasta I’d have no immune system to speak of. But . . .
I was told, warned if you will, that the main side-effect of the Neulasta would be pain in my joints and/or bones, something like arthritis. Alright, I’ve had arthritis, I can deal. In fact, as it turns out, I’ve had only minor arthritis, and this artificially induced “arthritis-like” pain isn’t even as bad as my actual arthritis. Would that I could leave the side-effects of this one right there and toddle on. If wishes were horses, beggers would ride.
There’s this ramping up phenomenon that I’m having difficulty describing to my doctor’s and nurses, who all seem, by the way, sincerely interested, and concerned for me. But they keep giving me that tilted head, quizzical look dogs give you when you try to tell them how your day went. There’s no spark of recognition or understanding over words like “printer crashed” or “left on hold for 3 hours.” My flesh feels like it was used as a pincushion by the entire labor force at WH Bagshaw needle manufacturers in my sleep. I can’t touch anything on myself for almost two days without flinching, and PLEASE don’t hug me! I have a tendency to cross my arms in front of myself without thinking about it, and I almost pass out from the surprise. On the other hand, it helps me to wake up at my desk.
Let’s just back wing a bit and take a look at that part where the goal is to prevent disruption of my normal life. It’s a given that the realization of such a goal is impossible. Aside from spending 3 hours of a working day in a clinic every two weeks getting drips and infusions, there is the muscle fatigue that makes you lose interest in regular activities, and the tendency towards depression that you don’t want to show . . . not because it looks weak on your part, but because it worsens the depression of those who love you and who are feeling helpless already.
Then all of the above combines with the simple fact that foreign chemicals are piling up in the storage areas of every cell your body can still maintain, and this can make you cranky as all get out. I hear myself respond to the question, “Can I get you something to drink?” by saying, “I just finished a cup of TEA!” And how normal is your day going to be when there’s the chemo-brain that makes even simple decisions nearly impossible. Please don’t ask me “either/or” questions, such as, would you like to meet for lunch tomorrow, or get coffee together this afternoon? I can’t handle options; I short-circuit. My priceless husband asks me if I’d like him to cook dinner tonight or order out and I self-implode, as my brain wimpers, Yes! Either! Which would be better? What would you rather? I don’t KNOW! 
Well, all of this is normal, and for the most part temporary, and there is this unmentioned side-effect of having cancer and being a chemo-patient that is, you’re forgiven.
 
And still, when I’ve thought all of these things, and rolled my eyes, and lamented all the losses and insufficiencies in my current world, I’m brought up short by the knowledge that things are just crap right now, but I’ll live through it. Literally. And, I’m halfway done. 🙂
How cool is that?