September 2014
02/09/14 06:23
What seem to us bitter trials are often blessings in disguise. -- Oscar Wilde
What I Can Tell You About Chemo
My Experience
I had six rounds of chemotherapy, three weeks apart. I got taxol and carboplatin, for endometrial cancer. The first day of chemo felt like the worst day of my life. I didn’t want to get in the car. I got ready like a soldier who didn’t want to go but knew the duty. I dressed in soft layered clothes and warm socks (they later became my Lucky Socks, and I wore them each time). I’d eaten breakfast as instructed, and my husband and I had packed our lunches for the day, our computers, and a movie to watch on my laptop. Just as we were backing out of the driveway, I realized I’d forgotten to brush my teeth. I thought about how that was the least of my problems. I didn’t want to go back in the house because I wondered if I could get back in the car if I did. So I said nothing and decided it was good luck to go with unbrushed teeth, I just made that up on the spot but it turned out to be true. Because to my surprise, I learned the chemo room was a sublime place, full of peace and calm and even laughter.
I could not believe how relaxed the other patients were. Everybody had people who’d accompanied them, and they seemed calm, too. My first day I was all, “Are they crazy? Don’t they know where they are?” But, I was the one who needed to realize things. Because, for this one day you are doing everything you can about the situation. So, let up. The nurses are incredible, the “coping drugs” are state-of-the-art, and the day belongs to you. The regulars get to know each other. My year, there was another patient, Bob, who was the mayor of the chemo room. He was always greeting everybody as he moved along the rows of reclining chairs, cracking wise, taking the edge off. He drove the nurses crazy offering commentary while they tried to set up a patient’s I.V., made the receptionists roll their eyes with his cornball jokes, and whenever he saw me he’d arch an eyebrow and say, “Are you following me?” He died two years later, and this site is dedicated to his memory.
The drill goes something like this. You take a seat in the recliner of your choice and they hook you up to an I.V. At the start of your infusion each time, they begin with those coping drugs. This might include an anti-nausea drug, steroids, Benedryl and even one of the anti-anxiety drugs. Say this for them, they sugarcoat the thing. The more unpleasant effects don't roll in for a couple of days and actually, between one med and another, you'll be feeling pretty fine on infusion day. You’ll be nice and drowsy by the time the healing poison starts through the tube. If you don’t sleep right through it, you can get up and roll your pole around to visit other patients, use the bathroom, visit the coffee stand and snack on whatever they’ve got that day (they always have snacks around).
Despite the fact that cancer is so often referred to in terms of “battles” and “fighting,” mine was really more like a long slog. Chemo takes time and happens in cycles. You might as well settle in and be patient. You have good weeks and nadirs. After a couple of rounds, you can learn how to ride it. Each time is a little bit different, some are easier than others, you get more tired toward the end. My fifth round was the hardest for some reason. After that, I felt a little scared to go back again. But I did and my sixth and final round was not as hard. So, go figure.
I can’t believe what I used to think about chemo before I had it. I thought it was debilitating and painful and the worst thing that could happen to you. I remember wondering if you could even walk around when under it. Of course you can. You can toodle around the house and do little projects and I even did some light yard work. There is clear and present evidence that actually exercising can lessen symptoms and improve prognosis. And as I say elsewhere on this site, taking a walk every day was essential for me. Just factor in the need for naps, not only because of fatigue during the day but because your night sleep will get disrupted and will seldom be the best you've ever had. My function levels were about like having the flu. That’s not great, but it’s not the devastation that I anticipated.
As the weeks roll by, you’d be amazed at what becomes the new normal. I started to feel like I was “off” on evenings and weekends. On Friday nights I’d feel all relaxed and off duty and like I’d done a good job that week and was free to go until Monday. Later, I even found a quote from a like-minded survivor whose battle cry is that cancer doesn’t grow on the weekends:
(http://onwisconsin.uwalumni.com/features/the-wayfinders/)
I don’t think that this illusion hurt one bit, because less stress never hurt anyone. I went for a reiki treatment on the Sunday before each of my Tuesday infusions, and one time the reiki practitioner said that I looked remarkably healthy and well. “Yeah,” I said, “Sometimes I honestly don’t believe that I have cancer.”
“Then don’t,” she replied.
I was fortunate enough to not be working when I was going through chemo, so I could devote myself to it completely and nap any time I wanted to and didn’t have to worry about a sleepless night because I could make it up later. On the other hand, people who did continue to work through chemo tell me that it helped psychologically to be connected to something like normal life and keep going by being hooked into a project. Either way, treat chemo with the respect it deserves and take care of yourself first. It’s not just like normal life, but it may give you one back. Be honest about whether you are using work to avoid taking care of yourself if you are that end of the spectrum. Be honest about whether you should find a little project to take yourself out of being immersed only in your cancer, if you are at the other end of the spectrum. I decided to make myself draw or paint every day. One sketch I did was of my beloved 12 year old Maine coon cat, who sat in the doorway of the bedroom during the hardest afternoons of my nadirs, guarding me. Diligent in his duty, I had him there holding still for the duration and thus he was a good artist’s model. But he was an even better guardian.
WHAT IS A PORT?
A port is inserted into your chest (usually) or some other part of the body, like the abdomen, by a quick outpatient surgery. It then sits under your skin and consists of a spongy little disk, where they will insert the needles to start your I.V. each time, that’s connected to a tube that goes into an artery so that the infusion can be dispersed through your bloodstream. Sounds really unappetizing, I know, but it doesn’t hurt and it actually makes your chemo months much easier. They don’t have to find a vein each time, and that saves your veins from toughening or even collapsing over time because of the chemo drugs (it happens). It may even make your chemo treatment more efficient by starting the infusion through the heart (in the case of a chest port). It can later be removed with another, much quicker this time, outpatient surgery. Incredibly, some people leave it in. I wanted mine out the minute my doctor gave the go-ahead, which in my case was six months after treatment ended (he was waiting to see if there would be a recurrence). My scar is all but invisible.
When they told me I was going to need chemo, I got to googling of course, and I was very lucky to find this years-old blog (I'm so glad he left it up!) which is where I first ever heard about the thing called a port, and if I hadn't learned it through this funny, easy-going guy’s blog, I think I would have been horrified by it. Instead, I was able to wrap my head around it and learn about getting the port flushed, etc. Anyway, his is really the road map I used for knowing how chemo goes and for not fearing it.
NAUSEA
Word needs to get out that nausea has all but been licked for many kinds of chemotherapies. There are several wonderful drugs that have come out in the past decade that controlled the vomiting completely in my case. (Regimens differ, of course, depending on what kind of cancer you have and how it is being treated.) I cannot imagine what chemo was like before this, but I was blessed not to have to know. I never threw up during treatment. Never.
They gave me a drug called Emend, which my nurse called “the Cadillac of anti-nausea drugs” (as of the year 2010). They will start you on one or more of these before you even get the chemo and you take them for the first couple of days after an infusion. They work. That means you can keep food down and get the nutrition from it. You can keep drink down and get the vital hydration you need during chemo. You won’t feel normal, you’ll know something is going on. By the end of a few months, your stomach (and your whole alimentary tract) will be feelin’ it. But you don’t have to throw up.
Here’s another sure fire fixer for nausea or just the kind of ragged stomach you will get more or less of with chemo. While you put your feet up, have a nearby loved one grate an inch or so of raw ginger into a glass. You need someone else to do this because nobody likes to grate ginger, and you aren't feeling well right now so you shouldn't have to. That kind person should then squeeze the ginger fibers firmly to catch all the juice and throw away the vegetable part. Fill the rest of that glass with regular fruit juice or whatever you like. Drink it right down and in minutes or less, you’ll feel better. I tried dried ginger and ginger candies and teas, but none of them had this effect. Only fresh, raw ginger worked. (But it is too strong alone and needs to be mixed with juice or something.)
A 25-year veteran chemo nurse told me once, “Nothing we can give you works better for nausea than acupuncture.” I did acupuncture throughout chemo, and still do. It was great for everything from calming my nerves (there are 3 points in the ear that work better than valium, ask for “shen men”), to strengthening my body, to detoxing after all those chemicals. If you go to a community acupuncture clinic, which means you share a big room with several people all in recliners -- which will probably feel familiar to you by now -- you should be able to get a treatment for anywhere from $15 - $30 (cheap!). They have sliding scales.
But the acupuncturist didn’t live in my house where I could access her on demand,* so for nausea I had to rely on my meds and on keeping some ginger in the vegetable drawer.
CONSTIPATION
There is a suite of side effects that may happen from chemo, but you won’t necessarily get all of them. I didn’t. There’s one I did get, and I got it bad. The word they use for it is constipation, but they really ought to have a different word for the kind I got from chemo. After my first round, I went eight very long and painful days without pooping. When I finally did, I was almost afraid to, but it actually slid right out rather gently. This not only bolstered my will to live, it bolstered my will to fight back.
Before the second round, I sat down the nurse who was my case manager and had her work out an attack plan for the next time. Because I was never going through that again. Also, elimination is very important with all that stuff flushing through you. She had me pound away with the laxatives, on a schedule we set up, before I even started my second round. (Colace did it for me, and so did a rhubarb pill I got from my acupuncturist. My doctor said I could take 3 Colace up to 3 times a day.) I had to work for it, but I managed to poop out something every day after that and for all the rounds to come.
This leads us to the subject of hemorrhoids. There is a non-surgical treatment for the internal kind called the Keesey method using electrogalvanic coagulation. I wish I’d known about it earlier. I had mine treated in a series of pretty easy sessions for which my gratitude cannot be adequately expressed. (I had one external one cut off the old fashioned way, and…well, what’s done is done but I wouldn’t do it again.) It can wait for that year after treatment when you are ready to go out and take care of other things once the cancer emergency has passed. Google the Keesey technique to read up. My naturopath recommended a clinic near me.
ASK FOR HELP
So speak up. If something about chemo is pushing you to your limit, talk to your people. Somebody knows something that might help and you can learn how to “do” the chemo better. There isn’t some obligatory amount of suffering that just comes with the chemo. Help yourself out.
EATING IS IMPORTANT
Try to eat something twice a day. On my worst days, I ate perhaps one slice of French toast in the morning, one cup of soup in the afternoon. Most days, you can do better than that. Somehow I was always able any time of day to down a cup of grits with a pat of butter on top, and since the instant packets just require boiling water, the caretaker and I were both really happy about this.
I was proud of my blood tests throughout the chemo and how superbly I kept my red and white blood counts up and impressed all the nurses with my numbers. White cells did drop after each treatment, of course, but they bounced back well and I never had to cancel a chemo because they weren’t adequate (as can happen). I took an iron supplement, under the supervision of my nurse/case manager, until about halfway through the chemo. This was because I had become severely anemic in the lead-up to my diagnosis and had to get into normal ranges for my red blood count. And incredibly I did break through to normal range, right in the middle of chemo, so just know that it can be done. But she and I also attribute my good red cell results to the religious inclusion of spinach, kale or hijiki with every meal – any leafy thing that’s high in iron. Hijiki (pronounced "hee-jee-kee") is a Japanese seaweed that's now banned in several western countries over concerns about arsenic so I guess I cannot recommend it, much as I'd love to. But anyway my husband mixed up a big bowls of spinach and hijiki, and I would spoon one or the other onto my plate every day.
If you want to study up on kale and get loads of recipes, try one of the blogs by Diana Dyer, a multiple-time cancer survivor who also happens to be a registered dietician and an organic farmer. (She’s going to bring all her blogs under one roof at some point, so if these links are outdated when you read this, search the web for Diana Dyer, R.D.) Here are two of them:
365 Days of Kale
Diana Dyer.com
For some reason every chemo patient is referred to those day glow colored sports drinks and chocolaty canned nutrition drinks, you know the ones, and I went out and stocked up before beginning. I drank exactly one can of each type and loathed them both. Plus, look what’s at the top of the ingredients list. Corn syrup. Bad for you even if you don’t have cancer. Not to mention things like BVO (brominated vegetable oil) and who knows what. I just didn’t see the point. You can eat something REAL instead, and almost any kind of soup is surely more nutritious. If you are under a truly brutal type of chemo and must resort to one of these drinks, then do so. After all, you have to stay alive in order for it to work. I ended up donating my unopened stash to my cancer center and did very well without them.
DRINKING IS EVEN MORE IMPORTANT
Keep a pitcher of water by the bed. Drink lots of water. The chemo is sucking you dry and it is important that you head this off and stay hydrated. With the pitcher right there, you can view your progress as you empty it out through the day.
A friend of mine had leukemia seven years ago (She’s out clear! She’s also run the London Marathon twice since then), and she was a great chemo coach to me. One of the things she mentioned to me before I started was that she was unable to tolerate the taste of either coffee or soft drinks while on chemo (she loves them both in real life). So, I didn’t even try them. I liked rooibos tea while I was on chemo, and drank it a lot, and was satisfied with that and water.
Then one day, I was feeling pretty good and took a longer than usual walk. I ended up waiting for a light on a corner right in front of a mini mart. I got to wondering what a root beer would taste like. It’s the only soft drink that I drink, and it isn’t often, but I just adore it as an occasional treat. I stepped in and bought one. Delicious! Wish I’d discovered that sooner. I'm not advocating rampant sugary drinks or other junk food with this story. The lesson is whatever anyone else tells you – me included – go ahead and override them if you have to, to stay happy while you top up on fluids (though plain water is always best). If it’s a simple pleasure in moderation and it will help, you deserve it. Immoral, illegal or fattening? Please don’t do anything immoral. Go ahead with the ones that are fattening or currently illegal in your state.
MEDICINAL MUSHROOMS
Agaricus Blazei is the name of a mushroom that cancer patients in China and Japan take because there is evidence that it strengthens the immune system and, possibly, prevents metastasis. For more information about this, research PSK, a polysaccharide derived from mushrooms. Since my husband is Japanese, he got right on it and ordered some capsules that contain the dried mushroom. As with anything, check with your doctor to be sure they have no objections (mine didn’t). I took three in the morning and three before bed, to be taking them when I had an empty stomach. We ordered them over the internet and they were always delivered very quickly. I know that you can get a mushroom combination at some American pharmacies, too, and I am taking one of those now. (My combination includes Agaricus Blazei, reishi, shitake, maitake, and coriolous versicolor.) Of course, internet or bricks and mortar, you should know something about who you are getting them from.
Here is one writeup in English that I have found on these, and I found it long after my own recovery. This excerpt (written in 2005) echoes my own experience:
"In Japan, PSK is an approved anti-cancer drug with 20 years of research behind it. PSK sales in Japan account for hundreds of millions dollars worth of sales each year. But in the US, PSK is little known, is not used by mainstream doctors, and until recently nothing like it was readily available. Now a nutritional supplement designed to be identical to PSK is available in the US, but very few mainstream doctors, and actually not many alternative practitioners are aware of it. So in the US, PSK has the status of a little known nutritional supplement or alternative therapy. Which is too bad in light of its proven benefits, easy administration, and lack of toxicity..."
http://www.cancerguide.org/psk.html
The only other thing I found in English was this paper claiming to show that certain mushrooms resulted in a “statistically significant difference in overall survival at five years” for some cancers:
“Efficacy of Yun Zhi (Coriolus versicolor) on Survival in Cancer Patients: Systematic Review and Meta-Analysis, ” Recent Patents on Inflammation & Allergy Drug Discovery 2012, Vol.6, No. 1.
GLUTAMINE
I was advised to take glutamine for my particular chemo regimen because one of my drugs was Taxol. I was told to take 10 grams of glutamine three times a day, beginning 24 hours after the first dose of Taxol and to do this for three to four days. I did this for each round, religiously and exactly according to instructions. It was an impressive fistful of pills at a time.
The handout I was given said, “Glutamine is an amino acid found in the blood and human tissue. Deficiency can occur during metabolic stress. It is unclear how glutamine may protect or reduce neurotoxicity related to taxanes, or how it may reduce the arthralgias and myalgias related to Taxol administration, however it has been shown to.”
I am not dispensing medical advice here. I am reporting this so that so that you can mention it to your doctor and find out if this is relevant to whatever they are going to be using on you. Be sure it is safe for you in your situation and that there are no contraindications.
WALK EVERY DAY
I have a whole chapter on this, but here’s the shorter: I walked almost every single day I was in chemo, missing about four days during the whole time. Some – many – days my walk was the only thing I really did that day, preceded and followed by staying in bed. After my walk, I got about two to three hours of complete peace of mind. It really had a profound effect on my mental game, which, as I’ve said throughout this site, was harder than the physical game. My doctor gave me a Valium prescription, but I still have the unfinished bottle. I preferred the effects of walking.
Exercise is not incidental.
BODY PAINS
Under my particular chemo regimen, day 4 after each treatment brought on the body pains. They were somewhat similar to having the flu, except the flu is a natural phenomenon and chemo is not. A very, very hot bath felt great and gave me a couple of hours of relief from them. Just before my diagnosis I had splurged on a $60 bottle of bath oil in a gorgeous grapefruit scent (oh, all right: the brand was Jo Malone). Now was the time to use as much of it as I wanted to. It helped. So my scientific conclusion is that luxuriously expensive bath oil is helpful for chemo body pains. Do your own experiments.
Here’s another thing I did. Depending on how high your tolerance for woo-woo is, I pass this along. I bought and used something called an “earthing” bed sheet. You can read up on earthing, sometimes called “grounding” at this link. In short, if you think running around barefoot in the yard makes you feel better in some way you can’t quite define, you might be interested.
BALDNESS
My oncologist once hung his head and shook it slowly when he told me that he’d had patients who’d refused treatment because they didn’t want to go bald. I couldn’t fathom it. I was so grateful that they had something to help me, so grateful for all the people who went before me and refined chemo into the weapon that it was when I needed it. I can understand turning chemo down if you have one of the cancers for which it has not shown to help, or if for any reason you don’t think the side effects are worth the risks in your case. But being bald for six months of your life is nothing. The longer I thought about it, the more I believed that it wasn’t really the baldness that those patients couldn’t face. They couldn’t face what it represented. Going bald from chemo is the most visible manifestation of the fact that you are in chemo – that you have cancer. That is the real problem.
But as my own time grew closer, I had to admit that I was feeling more emotional about hair loss than I thought I would. You’re just never ready. When it’s coming out in clumps in the shower and you can see your scalp more clearly each day, you know this is real. I thought it would help to just shave it all off. I didn’t want to go to my hairdresser, because she was one of the many people I hadn’t told yet. I bought an electric clipper at the drug store, the kind for little boys’ buzz cuts, thinking I might try to do it myself, like Samantha did on Sex and the City. I was embarrassed to ask my husband. I thought it might be hard for him. But unbeknownst to me, he took the clipper and “practiced” behind the scenes. So when almost all of my hair had come out by the twelfth day after my first chemo, and great swaths of my scalp were visible in a most unattractive way, he very cheerfully told me he was ready to shave my head for me and spared me having to ask. We spread out newspaper, put a chair in the center, and I took a seat. He did a beautiful job and it felt good to be done with it. Then I popped on a beret and we went out into the dark winter night for a walk. I felt comfortably invisible and completely free.
I’m not saying that chemo baldness is not an issue for men. But, they can hide in plain sight. If you’re a woman, you have to do something fast. (How fast? The average time frame is 10 – 14 days after the first infusion.) Wig? Scarf? Hats? Even if you choose to just walk around bald, believe me, you’ve done something.
It takes a pretty brave woman to walk around bald out in public, though some do. Since I was using all my bravery to get through cancer, I didn't have any left over for letting the whole world see my bald head, proud as I was of its beauty. So I wore scarves and hats out in public. But I walked around the house bald. Once, I forgot and stepped out in the front yard to check on something and was greeted by a jogger going by. Minutes later I realized I was “naked” but it was too late to worry about it and the jogger, to her credit, hadn’t tipped me off with any untoward reaction.
I’ve never been good at tying scarves in intricate or even simple ways – and when I did get something going it wouldn’t stay on my head once I started moving around. What I ended up wearing every day was something called the “Buff”. There are several makes, you want the “Original” to start and, depending on your season, you might consider the cold weather or sun protection versions. The “sahariane” style in the Sahalie catalog was my go-to; sometimes I did “the pirate”. They were comfortable on my bare head’s skin (wigs are not), were light and stretchy, and they stayed on. I had a couple in different colors, to go with different outfits. They have instructions at the site, look for “How to Wear.” Here are two places you can find them:
http://www.buffusa.com/
http://sahalie.blair.com/
Being bald is really, really comfortable. It’s convenient. In the shower you just run the soap over your head same as you do over the rest of you. Done! Would I dare coin such a corny phrase as Bald is Beautiful? In a minute. It’s very beautiful. The shape of your head, which you’ll never otherwise see in this way, is exquisite. More than one man told me it was unexpectedly sexy, and only one of them was married to me. That one was with me when we came upon a person selling home-made earrings and he urged me to get the big, long pink metal squiggles so I could wear them around the house with my bald head. I did, and it looked great.
Going without eyebrows and eyelashes, however, has nothing to recommend it. If you had bushy black brows and lashes, which I did, then losing them really changes your face. As the first few eyebrow hairs fell out, I felt more like everybody else for once (= not so bushy). Then I began to feel way too bare. Finally, I had no eyebrows and no eyelashes at all. The last month of chemo and the first month or two of recovery were the hardest of all in terms of living with how I looked. I didn’t like it, but I still thought it was a small price to pay. I knew I had to wait. I knew a few months is a short period of time. I simply bore up (and of course, I had plenty else to think about). One day I felt some mad itching just above my orbit, and when I went to scratch it I detected the first faint little hairs growing in. It got better every single day after that.
At first, you feel like it’s going to take forever for the hair on your head to grow back. But then it seems to grow faster and finally you have to go and have it cut again – if only to get it into some style. It grows in with each hair coming to a point, which isn’t the case with hair that’s ever been cut, making the head of hair look fuzzy in a distinctive way that I can now pick out in a crowd. And contrary to what you’d think, it doesn’t all grow in the same length all over. The top takes forever while the sides are getting longer faster, so there will be a brief mullet period. When I was bald from chemo, I couldn’t remember what I’d looked like with hair. Now that my hair is back, I can’t remember what I looked like bald. But I know I was brave and beautiful and I stuck by myself the whole time. ###
What I Can Tell You About Chemo
My Experience
I had six rounds of chemotherapy, three weeks apart. I got taxol and carboplatin, for endometrial cancer. The first day of chemo felt like the worst day of my life. I didn’t want to get in the car. I got ready like a soldier who didn’t want to go but knew the duty. I dressed in soft layered clothes and warm socks (they later became my Lucky Socks, and I wore them each time). I’d eaten breakfast as instructed, and my husband and I had packed our lunches for the day, our computers, and a movie to watch on my laptop. Just as we were backing out of the driveway, I realized I’d forgotten to brush my teeth. I thought about how that was the least of my problems. I didn’t want to go back in the house because I wondered if I could get back in the car if I did. So I said nothing and decided it was good luck to go with unbrushed teeth, I just made that up on the spot but it turned out to be true. Because to my surprise, I learned the chemo room was a sublime place, full of peace and calm and even laughter.
I could not believe how relaxed the other patients were. Everybody had people who’d accompanied them, and they seemed calm, too. My first day I was all, “Are they crazy? Don’t they know where they are?” But, I was the one who needed to realize things. Because, for this one day you are doing everything you can about the situation. So, let up. The nurses are incredible, the “coping drugs” are state-of-the-art, and the day belongs to you. The regulars get to know each other. My year, there was another patient, Bob, who was the mayor of the chemo room. He was always greeting everybody as he moved along the rows of reclining chairs, cracking wise, taking the edge off. He drove the nurses crazy offering commentary while they tried to set up a patient’s I.V., made the receptionists roll their eyes with his cornball jokes, and whenever he saw me he’d arch an eyebrow and say, “Are you following me?” He died two years later, and this site is dedicated to his memory.
The drill goes something like this. You take a seat in the recliner of your choice and they hook you up to an I.V. At the start of your infusion each time, they begin with those coping drugs. This might include an anti-nausea drug, steroids, Benedryl and even one of the anti-anxiety drugs. Say this for them, they sugarcoat the thing. The more unpleasant effects don't roll in for a couple of days and actually, between one med and another, you'll be feeling pretty fine on infusion day. You’ll be nice and drowsy by the time the healing poison starts through the tube. If you don’t sleep right through it, you can get up and roll your pole around to visit other patients, use the bathroom, visit the coffee stand and snack on whatever they’ve got that day (they always have snacks around).
Despite the fact that cancer is so often referred to in terms of “battles” and “fighting,” mine was really more like a long slog. Chemo takes time and happens in cycles. You might as well settle in and be patient. You have good weeks and nadirs. After a couple of rounds, you can learn how to ride it. Each time is a little bit different, some are easier than others, you get more tired toward the end. My fifth round was the hardest for some reason. After that, I felt a little scared to go back again. But I did and my sixth and final round was not as hard. So, go figure.
I can’t believe what I used to think about chemo before I had it. I thought it was debilitating and painful and the worst thing that could happen to you. I remember wondering if you could even walk around when under it. Of course you can. You can toodle around the house and do little projects and I even did some light yard work. There is clear and present evidence that actually exercising can lessen symptoms and improve prognosis. And as I say elsewhere on this site, taking a walk every day was essential for me. Just factor in the need for naps, not only because of fatigue during the day but because your night sleep will get disrupted and will seldom be the best you've ever had. My function levels were about like having the flu. That’s not great, but it’s not the devastation that I anticipated.
As the weeks roll by, you’d be amazed at what becomes the new normal. I started to feel like I was “off” on evenings and weekends. On Friday nights I’d feel all relaxed and off duty and like I’d done a good job that week and was free to go until Monday. Later, I even found a quote from a like-minded survivor whose battle cry is that cancer doesn’t grow on the weekends:
(http://onwisconsin.uwalumni.com/features/the-wayfinders/)
I don’t think that this illusion hurt one bit, because less stress never hurt anyone. I went for a reiki treatment on the Sunday before each of my Tuesday infusions, and one time the reiki practitioner said that I looked remarkably healthy and well. “Yeah,” I said, “Sometimes I honestly don’t believe that I have cancer.”
“Then don’t,” she replied.
I was fortunate enough to not be working when I was going through chemo, so I could devote myself to it completely and nap any time I wanted to and didn’t have to worry about a sleepless night because I could make it up later. On the other hand, people who did continue to work through chemo tell me that it helped psychologically to be connected to something like normal life and keep going by being hooked into a project. Either way, treat chemo with the respect it deserves and take care of yourself first. It’s not just like normal life, but it may give you one back. Be honest about whether you are using work to avoid taking care of yourself if you are that end of the spectrum. Be honest about whether you should find a little project to take yourself out of being immersed only in your cancer, if you are at the other end of the spectrum. I decided to make myself draw or paint every day. One sketch I did was of my beloved 12 year old Maine coon cat, who sat in the doorway of the bedroom during the hardest afternoons of my nadirs, guarding me. Diligent in his duty, I had him there holding still for the duration and thus he was a good artist’s model. But he was an even better guardian.
WHAT IS A PORT?
A port is inserted into your chest (usually) or some other part of the body, like the abdomen, by a quick outpatient surgery. It then sits under your skin and consists of a spongy little disk, where they will insert the needles to start your I.V. each time, that’s connected to a tube that goes into an artery so that the infusion can be dispersed through your bloodstream. Sounds really unappetizing, I know, but it doesn’t hurt and it actually makes your chemo months much easier. They don’t have to find a vein each time, and that saves your veins from toughening or even collapsing over time because of the chemo drugs (it happens). It may even make your chemo treatment more efficient by starting the infusion through the heart (in the case of a chest port). It can later be removed with another, much quicker this time, outpatient surgery. Incredibly, some people leave it in. I wanted mine out the minute my doctor gave the go-ahead, which in my case was six months after treatment ended (he was waiting to see if there would be a recurrence). My scar is all but invisible.
When they told me I was going to need chemo, I got to googling of course, and I was very lucky to find this years-old blog (I'm so glad he left it up!) which is where I first ever heard about the thing called a port, and if I hadn't learned it through this funny, easy-going guy’s blog, I think I would have been horrified by it. Instead, I was able to wrap my head around it and learn about getting the port flushed, etc. Anyway, his is really the road map I used for knowing how chemo goes and for not fearing it.
NAUSEA
Word needs to get out that nausea has all but been licked for many kinds of chemotherapies. There are several wonderful drugs that have come out in the past decade that controlled the vomiting completely in my case. (Regimens differ, of course, depending on what kind of cancer you have and how it is being treated.) I cannot imagine what chemo was like before this, but I was blessed not to have to know. I never threw up during treatment. Never.
They gave me a drug called Emend, which my nurse called “the Cadillac of anti-nausea drugs” (as of the year 2010). They will start you on one or more of these before you even get the chemo and you take them for the first couple of days after an infusion. They work. That means you can keep food down and get the nutrition from it. You can keep drink down and get the vital hydration you need during chemo. You won’t feel normal, you’ll know something is going on. By the end of a few months, your stomach (and your whole alimentary tract) will be feelin’ it. But you don’t have to throw up.
Here’s another sure fire fixer for nausea or just the kind of ragged stomach you will get more or less of with chemo. While you put your feet up, have a nearby loved one grate an inch or so of raw ginger into a glass. You need someone else to do this because nobody likes to grate ginger, and you aren't feeling well right now so you shouldn't have to. That kind person should then squeeze the ginger fibers firmly to catch all the juice and throw away the vegetable part. Fill the rest of that glass with regular fruit juice or whatever you like. Drink it right down and in minutes or less, you’ll feel better. I tried dried ginger and ginger candies and teas, but none of them had this effect. Only fresh, raw ginger worked. (But it is too strong alone and needs to be mixed with juice or something.)
A 25-year veteran chemo nurse told me once, “Nothing we can give you works better for nausea than acupuncture.” I did acupuncture throughout chemo, and still do. It was great for everything from calming my nerves (there are 3 points in the ear that work better than valium, ask for “shen men”), to strengthening my body, to detoxing after all those chemicals. If you go to a community acupuncture clinic, which means you share a big room with several people all in recliners -- which will probably feel familiar to you by now -- you should be able to get a treatment for anywhere from $15 - $30 (cheap!). They have sliding scales.
But the acupuncturist didn’t live in my house where I could access her on demand,* so for nausea I had to rely on my meds and on keeping some ginger in the vegetable drawer.
CONSTIPATION
There is a suite of side effects that may happen from chemo, but you won’t necessarily get all of them. I didn’t. There’s one I did get, and I got it bad. The word they use for it is constipation, but they really ought to have a different word for the kind I got from chemo. After my first round, I went eight very long and painful days without pooping. When I finally did, I was almost afraid to, but it actually slid right out rather gently. This not only bolstered my will to live, it bolstered my will to fight back.
Before the second round, I sat down the nurse who was my case manager and had her work out an attack plan for the next time. Because I was never going through that again. Also, elimination is very important with all that stuff flushing through you. She had me pound away with the laxatives, on a schedule we set up, before I even started my second round. (Colace did it for me, and so did a rhubarb pill I got from my acupuncturist. My doctor said I could take 3 Colace up to 3 times a day.) I had to work for it, but I managed to poop out something every day after that and for all the rounds to come.
This leads us to the subject of hemorrhoids. There is a non-surgical treatment for the internal kind called the Keesey method using electrogalvanic coagulation. I wish I’d known about it earlier. I had mine treated in a series of pretty easy sessions for which my gratitude cannot be adequately expressed. (I had one external one cut off the old fashioned way, and…well, what’s done is done but I wouldn’t do it again.) It can wait for that year after treatment when you are ready to go out and take care of other things once the cancer emergency has passed. Google the Keesey technique to read up. My naturopath recommended a clinic near me.
ASK FOR HELP
So speak up. If something about chemo is pushing you to your limit, talk to your people. Somebody knows something that might help and you can learn how to “do” the chemo better. There isn’t some obligatory amount of suffering that just comes with the chemo. Help yourself out.
EATING IS IMPORTANT
Try to eat something twice a day. On my worst days, I ate perhaps one slice of French toast in the morning, one cup of soup in the afternoon. Most days, you can do better than that. Somehow I was always able any time of day to down a cup of grits with a pat of butter on top, and since the instant packets just require boiling water, the caretaker and I were both really happy about this.
I was proud of my blood tests throughout the chemo and how superbly I kept my red and white blood counts up and impressed all the nurses with my numbers. White cells did drop after each treatment, of course, but they bounced back well and I never had to cancel a chemo because they weren’t adequate (as can happen). I took an iron supplement, under the supervision of my nurse/case manager, until about halfway through the chemo. This was because I had become severely anemic in the lead-up to my diagnosis and had to get into normal ranges for my red blood count. And incredibly I did break through to normal range, right in the middle of chemo, so just know that it can be done. But she and I also attribute my good red cell results to the religious inclusion of spinach, kale or hijiki with every meal – any leafy thing that’s high in iron. Hijiki (pronounced "hee-jee-kee") is a Japanese seaweed that's now banned in several western countries over concerns about arsenic so I guess I cannot recommend it, much as I'd love to. But anyway my husband mixed up a big bowls of spinach and hijiki, and I would spoon one or the other onto my plate every day.
If you want to study up on kale and get loads of recipes, try one of the blogs by Diana Dyer, a multiple-time cancer survivor who also happens to be a registered dietician and an organic farmer. (She’s going to bring all her blogs under one roof at some point, so if these links are outdated when you read this, search the web for Diana Dyer, R.D.) Here are two of them:
365 Days of Kale
Diana Dyer.com
For some reason every chemo patient is referred to those day glow colored sports drinks and chocolaty canned nutrition drinks, you know the ones, and I went out and stocked up before beginning. I drank exactly one can of each type and loathed them both. Plus, look what’s at the top of the ingredients list. Corn syrup. Bad for you even if you don’t have cancer. Not to mention things like BVO (brominated vegetable oil) and who knows what. I just didn’t see the point. You can eat something REAL instead, and almost any kind of soup is surely more nutritious. If you are under a truly brutal type of chemo and must resort to one of these drinks, then do so. After all, you have to stay alive in order for it to work. I ended up donating my unopened stash to my cancer center and did very well without them.
DRINKING IS EVEN MORE IMPORTANT
Keep a pitcher of water by the bed. Drink lots of water. The chemo is sucking you dry and it is important that you head this off and stay hydrated. With the pitcher right there, you can view your progress as you empty it out through the day.
A friend of mine had leukemia seven years ago (She’s out clear! She’s also run the London Marathon twice since then), and she was a great chemo coach to me. One of the things she mentioned to me before I started was that she was unable to tolerate the taste of either coffee or soft drinks while on chemo (she loves them both in real life). So, I didn’t even try them. I liked rooibos tea while I was on chemo, and drank it a lot, and was satisfied with that and water.
Then one day, I was feeling pretty good and took a longer than usual walk. I ended up waiting for a light on a corner right in front of a mini mart. I got to wondering what a root beer would taste like. It’s the only soft drink that I drink, and it isn’t often, but I just adore it as an occasional treat. I stepped in and bought one. Delicious! Wish I’d discovered that sooner. I'm not advocating rampant sugary drinks or other junk food with this story. The lesson is whatever anyone else tells you – me included – go ahead and override them if you have to, to stay happy while you top up on fluids (though plain water is always best). If it’s a simple pleasure in moderation and it will help, you deserve it. Immoral, illegal or fattening? Please don’t do anything immoral. Go ahead with the ones that are fattening or currently illegal in your state.
MEDICINAL MUSHROOMS
Agaricus Blazei is the name of a mushroom that cancer patients in China and Japan take because there is evidence that it strengthens the immune system and, possibly, prevents metastasis. For more information about this, research PSK, a polysaccharide derived from mushrooms. Since my husband is Japanese, he got right on it and ordered some capsules that contain the dried mushroom. As with anything, check with your doctor to be sure they have no objections (mine didn’t). I took three in the morning and three before bed, to be taking them when I had an empty stomach. We ordered them over the internet and they were always delivered very quickly. I know that you can get a mushroom combination at some American pharmacies, too, and I am taking one of those now. (My combination includes Agaricus Blazei, reishi, shitake, maitake, and coriolous versicolor.) Of course, internet or bricks and mortar, you should know something about who you are getting them from.
Here is one writeup in English that I have found on these, and I found it long after my own recovery. This excerpt (written in 2005) echoes my own experience:
"In Japan, PSK is an approved anti-cancer drug with 20 years of research behind it. PSK sales in Japan account for hundreds of millions dollars worth of sales each year. But in the US, PSK is little known, is not used by mainstream doctors, and until recently nothing like it was readily available. Now a nutritional supplement designed to be identical to PSK is available in the US, but very few mainstream doctors, and actually not many alternative practitioners are aware of it. So in the US, PSK has the status of a little known nutritional supplement or alternative therapy. Which is too bad in light of its proven benefits, easy administration, and lack of toxicity..."
http://www.cancerguide.org/psk.html
The only other thing I found in English was this paper claiming to show that certain mushrooms resulted in a “statistically significant difference in overall survival at five years” for some cancers:
“Efficacy of Yun Zhi (Coriolus versicolor) on Survival in Cancer Patients: Systematic Review and Meta-Analysis, ” Recent Patents on Inflammation & Allergy Drug Discovery 2012, Vol.6, No. 1.
GLUTAMINE
I was advised to take glutamine for my particular chemo regimen because one of my drugs was Taxol. I was told to take 10 grams of glutamine three times a day, beginning 24 hours after the first dose of Taxol and to do this for three to four days. I did this for each round, religiously and exactly according to instructions. It was an impressive fistful of pills at a time.
The handout I was given said, “Glutamine is an amino acid found in the blood and human tissue. Deficiency can occur during metabolic stress. It is unclear how glutamine may protect or reduce neurotoxicity related to taxanes, or how it may reduce the arthralgias and myalgias related to Taxol administration, however it has been shown to.”
I am not dispensing medical advice here. I am reporting this so that so that you can mention it to your doctor and find out if this is relevant to whatever they are going to be using on you. Be sure it is safe for you in your situation and that there are no contraindications.
WALK EVERY DAY
I have a whole chapter on this, but here’s the shorter: I walked almost every single day I was in chemo, missing about four days during the whole time. Some – many – days my walk was the only thing I really did that day, preceded and followed by staying in bed. After my walk, I got about two to three hours of complete peace of mind. It really had a profound effect on my mental game, which, as I’ve said throughout this site, was harder than the physical game. My doctor gave me a Valium prescription, but I still have the unfinished bottle. I preferred the effects of walking.
Exercise is not incidental.
BODY PAINS
Under my particular chemo regimen, day 4 after each treatment brought on the body pains. They were somewhat similar to having the flu, except the flu is a natural phenomenon and chemo is not. A very, very hot bath felt great and gave me a couple of hours of relief from them. Just before my diagnosis I had splurged on a $60 bottle of bath oil in a gorgeous grapefruit scent (oh, all right: the brand was Jo Malone). Now was the time to use as much of it as I wanted to. It helped. So my scientific conclusion is that luxuriously expensive bath oil is helpful for chemo body pains. Do your own experiments.
Here’s another thing I did. Depending on how high your tolerance for woo-woo is, I pass this along. I bought and used something called an “earthing” bed sheet. You can read up on earthing, sometimes called “grounding” at this link. In short, if you think running around barefoot in the yard makes you feel better in some way you can’t quite define, you might be interested.
BALDNESS
My oncologist once hung his head and shook it slowly when he told me that he’d had patients who’d refused treatment because they didn’t want to go bald. I couldn’t fathom it. I was so grateful that they had something to help me, so grateful for all the people who went before me and refined chemo into the weapon that it was when I needed it. I can understand turning chemo down if you have one of the cancers for which it has not shown to help, or if for any reason you don’t think the side effects are worth the risks in your case. But being bald for six months of your life is nothing. The longer I thought about it, the more I believed that it wasn’t really the baldness that those patients couldn’t face. They couldn’t face what it represented. Going bald from chemo is the most visible manifestation of the fact that you are in chemo – that you have cancer. That is the real problem.
But as my own time grew closer, I had to admit that I was feeling more emotional about hair loss than I thought I would. You’re just never ready. When it’s coming out in clumps in the shower and you can see your scalp more clearly each day, you know this is real. I thought it would help to just shave it all off. I didn’t want to go to my hairdresser, because she was one of the many people I hadn’t told yet. I bought an electric clipper at the drug store, the kind for little boys’ buzz cuts, thinking I might try to do it myself, like Samantha did on Sex and the City. I was embarrassed to ask my husband. I thought it might be hard for him. But unbeknownst to me, he took the clipper and “practiced” behind the scenes. So when almost all of my hair had come out by the twelfth day after my first chemo, and great swaths of my scalp were visible in a most unattractive way, he very cheerfully told me he was ready to shave my head for me and spared me having to ask. We spread out newspaper, put a chair in the center, and I took a seat. He did a beautiful job and it felt good to be done with it. Then I popped on a beret and we went out into the dark winter night for a walk. I felt comfortably invisible and completely free.
I’m not saying that chemo baldness is not an issue for men. But, they can hide in plain sight. If you’re a woman, you have to do something fast. (How fast? The average time frame is 10 – 14 days after the first infusion.) Wig? Scarf? Hats? Even if you choose to just walk around bald, believe me, you’ve done something.
It takes a pretty brave woman to walk around bald out in public, though some do. Since I was using all my bravery to get through cancer, I didn't have any left over for letting the whole world see my bald head, proud as I was of its beauty. So I wore scarves and hats out in public. But I walked around the house bald. Once, I forgot and stepped out in the front yard to check on something and was greeted by a jogger going by. Minutes later I realized I was “naked” but it was too late to worry about it and the jogger, to her credit, hadn’t tipped me off with any untoward reaction.
I’ve never been good at tying scarves in intricate or even simple ways – and when I did get something going it wouldn’t stay on my head once I started moving around. What I ended up wearing every day was something called the “Buff”. There are several makes, you want the “Original” to start and, depending on your season, you might consider the cold weather or sun protection versions. The “sahariane” style in the Sahalie catalog was my go-to; sometimes I did “the pirate”. They were comfortable on my bare head’s skin (wigs are not), were light and stretchy, and they stayed on. I had a couple in different colors, to go with different outfits. They have instructions at the site, look for “How to Wear.” Here are two places you can find them:
http://www.buffusa.com/
http://sahalie.blair.com/
Being bald is really, really comfortable. It’s convenient. In the shower you just run the soap over your head same as you do over the rest of you. Done! Would I dare coin such a corny phrase as Bald is Beautiful? In a minute. It’s very beautiful. The shape of your head, which you’ll never otherwise see in this way, is exquisite. More than one man told me it was unexpectedly sexy, and only one of them was married to me. That one was with me when we came upon a person selling home-made earrings and he urged me to get the big, long pink metal squiggles so I could wear them around the house with my bald head. I did, and it looked great.
Going without eyebrows and eyelashes, however, has nothing to recommend it. If you had bushy black brows and lashes, which I did, then losing them really changes your face. As the first few eyebrow hairs fell out, I felt more like everybody else for once (= not so bushy). Then I began to feel way too bare. Finally, I had no eyebrows and no eyelashes at all. The last month of chemo and the first month or two of recovery were the hardest of all in terms of living with how I looked. I didn’t like it, but I still thought it was a small price to pay. I knew I had to wait. I knew a few months is a short period of time. I simply bore up (and of course, I had plenty else to think about). One day I felt some mad itching just above my orbit, and when I went to scratch it I detected the first faint little hairs growing in. It got better every single day after that.
At first, you feel like it’s going to take forever for the hair on your head to grow back. But then it seems to grow faster and finally you have to go and have it cut again – if only to get it into some style. It grows in with each hair coming to a point, which isn’t the case with hair that’s ever been cut, making the head of hair look fuzzy in a distinctive way that I can now pick out in a crowd. And contrary to what you’d think, it doesn’t all grow in the same length all over. The top takes forever while the sides are getting longer faster, so there will be a brief mullet period. When I was bald from chemo, I couldn’t remember what I’d looked like with hair. Now that my hair is back, I can’t remember what I looked like bald. But I know I was brave and beautiful and I stuck by myself the whole time. ###
* I wonder, though.
Why isn't there an acupuncturist installed at every cancer center?
They should be there needling those shen men points in the ear on all comers. Patients, loved ones, staff, I mean everybody.
Further reading:
Effective Ovarian Cancer Treatment is Underused, Study Finds
NYT, August 3, 2015
http://www.nytimes.com/2015/08/04/health/ovarian-cancer-abdominal-chemotherapy-underused.html
Illustration: I pulled this off the internet years ago and honestly don't remember where I got it. I love it so much, though. So in lieu of giving proper credit for the graphic, I will link to where you can (supposedly) buy the album and to the Barcalounger company's web site. If you are too young to know that this is a vinyl record album cover, that's what it is.