Mary Cappello and Deidre Pope’s Practical Guide to Dealing with Chemotherapy
In the few months prior to my diagnosis of breast cancer, I developed a correspondence and budding friendship with the writer Barrie Jean Borich. When I got my diagnosis, Barrie put me in touch with a poet friend of hers who had been through breast cancer treatment herself, Deidre Pope. Deidre, whom I had never met, compiled the following guide for me to help me cope with so many of chemotherapy’s unknowns.
Her account was the single most helpful text I received during my cancer ordeal. While I went through chemotherapy treatment, I felt frustrated by the fact that very simple bits of advice that could go a long way toward easing discomfort weren’t readily available. It seems that we’re all thrown back on ourselves at this time, and are required to re-invent numerous wheels–in spite of the piles of brochures, pamphlets, magazines, chat rooms and all else that is thrown in one’s direction. I decided, then, simply to put in one place for other people confronting chemotherapy a guide that could combine Deidre’s original letter to me (titled Pope’s Compassionate Guide) and my own list of practical tips (titled Cappello’s Alphabetized Helper). Some of the material overlaps, but I think that all of it has the potential to help others.
Both of our treatment regimes included four dose-dense rounds of Adriamycin/Cytoxan, the standard treatment for most breast cancers. I was scheduled also to take Taxol, but a research study emerged close to the time at which I would have started the regime showing that Taxol was not effective in treating estrogen positive cancers, thus I sought a 2nd opinion at Dana Farber, and opted out of Taxol treatment. If you wish to add your own advice or wisdom to this document, please feel free to send it to me via e-mail, and I’ll do my best to update the material in a timely fashion. The emphasis here really is on practical management of side effects. It doesn’t attempt to broach bigger issues. We would like it to be known, however, that we eschew the color pink.
Pope’s Compassionate Precis
My biases: I’ve never been a big pill-taker. I hate taking drugs, so it was a struggle for me to just take the stuff I had to for my cancer, but that is also why I didn’t do any herbal remedies, supplements, etc. Also, I had a hell of a time eating, so drinking odd-smelling potions was simply not going to work for me. If I had chosen some sort of alternative medicine, I would have made sure that my practitioner was talking to my oncologist, and vice versa, and that we were all working together.
Also, a lot of people wanted to tell me what was right for me. They told me to take soy, overload on calcium, and never have sugar or fat ever again. They said massage would spread my cancer and that I should immediately sign up for every experimental treatment possible. Or I should avoid Western medicine altogether. It made my head spin.
What I decided was very simple: I trusted my doctors (though armed with my thousand pages of research, I questioned them mercilessly), but I also knew my own body and I knew what I needed to heal. I took the healing into my own hands, and left the “cure” up to them. I hope some of this will help, as you make many decisions in the coming weeks.
Alternative Approaches to Cancer Treatment that Worked for Me
1) Pre-empting some chemo effects
I found preparing for chemo to be maddening, because all of the stuff I read contradicted itself. You’ll get diarrhea. You’ll get constipated. You’ll get fat. You’ll lose weight. I really wanted an answer to the question what is going to happen to me?, but there really isn’t an answer until you go through your first round and see what it does to your body.
Yet there a few things that should help, no matter what:
Hydrating
I made sure I was fully hydrated, beginning the day before chemo. I think this helped the medicine move through my body better and more quickly (so it was out of me faster, too) and my body was at its best, so to speak, when we started. The nurses also said they could find a vein, better, because I was hydrated. You know you’re hydrated, in case you don’t know this, when your pee runs clear. I drank water until that happened, even though sometimes it meant I’d have to get up during chemo, and have someone drag the IV along to the bathroom with me. A small price to pay, as it turned out.
Veins
I always ran my hands under hot water, or put one of those little disposal hot-pack things on my hands/arms where I thought they were going to put the IV, to make it easier and less painful right before treatment. The longer I went through chemo, the harder it was to get a good vein, so the hydrating and warming was very important. If you are going to have a port, this is obviously irrelevant.
Wake up for pills
The first 2 or 3 days after chemo, I would set my alarm for every 4 hours, to wake me up to take the anti-nausea meds. They say you don’t need to do that, but I am grateful I did. I never once puked during my treatment, most likely because I never got behind on my dose.
Relaxation exercises
I talk about meditation, etc. later on, but I would do some combination of those things/relaxation techniques starting 3 days before chemo, because that’s the time I’d get all wound up about having to go in again. They helped me not freak out about treatment.
Have someone with you
Even if you have no side effects at all you won’t want to drive yourself home. Breast cancer treatment has such an emotional component to it, that even if you can physically do it, there’s no need. It helps so much to have someone sit with you, share the experience, and take you home and help you get into bed. Even better if they help monitor when you need to take your pain/nausea medication.
Plan on nothing for first few days afterwards
I know people who had chemo on Friday and were back at work on Monday. I was not one of them. I planned on doing a lot of nothing the first 4-5 days after my treatment. It’s a good idea to plan that way for your first treatment, and see how it turns out for you. Then you don’t have any worries, if you’re feeling poorly for a few days.
Mouthwash
Some chemo has the side effect of causing mouth sores or irritations. My partner, Robyn, mixed up this very simple mouthwash for me, that we found on a cancer resource web site. I rinsed my mouth with it every day, starting the day before my first treatment. I have no idea if it kept the mouth sores away, or if I would have never gotten them, but it was one of those things that made me feel like I was in control of something and I never had any trouble. We just put it in a water bottle (like a bike bottle) and I’d squirt and swish. Easier than making it up every night.
Mix 1 tsp. baking soda, 1 tsp. salt with 8 oz. of warm water.
Nausea control
I never went anywhere without a bag of animal crackers in my pocket. They were small and perfect for when I started to feel queasy. If I had a tiny little bit of something in my stomach, the nausea tended to fade. When I was home, I had other options, but I left home just one time without food, and never did it again!
Neulasta
Your docs will probably tell you about this, but it’s a drug that helps your white cells rebound more quickly. I had a shot of it after each chemo session. It’s one of the reasons I was able to keep going with the chemo. It can help you from getting infections or colds or whatever, since your immune system will be depressed. It’s not exactly holistic, but I believe it kept me out of the hospital, and also kept me on track for my treatment, after I wasn’t able to have my second one, due to low white counts. (That delayed my treatment by 2 weeks; with the Neulasta, I never had another delay.)
2) Massage and Energy work
Some sources caution against massage, with the suggestion that moving all your blood around in your body will spread your cancer. I think this is just utter crap. One of the most important things I did for myself was go for body work. I had a wonderful massage therapist who didn’t fixate on the cancer, but who understood it was now different for me, that I needed a couple pillows to be able to lay on my stomach without crushing my incision, and that she should ask if I wanted my bald head touched (the time I let her do it, it was really wonderful). I always felt like some of the toxins were out of my body by the time the massage was over.
Likewise, I went for energy work, which was completely different and utterly fascinating. I don’t even know what you call these people. I saw a woman by referral, but she would lay her hands on different parts of my body, and I would immediately go on these vivid, fascinating internal journeys. Sometimes I’d yammer incessantly to her about what I was seeing, sometimes for no reason I’d burst into tears when she touched me, and other times it was very silent and interior. She would balance my chakras at the end, and I can’t think of any other way to say this: I felt whole at the end of those sessions.
For my money, body and energy work off-set a lot of the heavy, toxic, awful, poisoned feeling that I had during chemo, and had the additional affect that I felt cared for and like it was okay for good things to happen to my body, too.
3) Meditation and guided relaxation
I never meditated until I got sick, and now I do it all the time. Not the kind of lotus-position, 30 minutes or more stuff. I’m not all that good at it. Very simple meditations did wonders for me. Immediately stopped me when panic or fear was rising; helped me relax before treatments; focused me back on myself, rather than wherever else I’d spiraled out to. When I’d go in to work, I would do little mini-meditations all the time, to keep me grounded.
Two examples: on the in breath, I’d think whatever word I wanted to draw in (healing, love, relief, peace) and exhale whatever I either wanted to get out of me (pain, fear) or send out into the world (love, peace, etc.) I’d do it until I lost focus, and that was usually enough. The other meditation I did all the time was just counting back from 10: breathe in, 10, out. Breathe in, 9, out. Down to 0. That was it. I don’t quite understand why that is so refreshing and grounding and centering, but it was saving to me.
Later, I started doing walking meditations and other kinds. I’d be glad to share the materials I have on that, if you are interested.
• Guided relaxations had the same affect as meditating. I keep talking about alleviating panic. I had a tendency to get myself all riled up a few days before the next chemo, or when I felt like I was out of control and I had a few tapes that I used to relax. It was a relief to just follow the steps, do the relaxation or visualization, and let everything else go. It was more structured than meditating, and I was less responsible for it; in other words, I could just follow it, rather than focus hard on whatever meditation I’d chosen.
I found a class, though I’ve never seen one since, at a wellness center near my house, and it was simply a half hour of guided relaxations, all different, all interesting, and again this helped me so much to get out of my head, and release negative energy.
4) Ditching responsibility
The worst piece of advice I got before I started chemo, was to keep doing everything I could in my regular life, until I found out I couldn’t do it. I would advise exactly the opposite.
I had a very difficult time with chemo, and I wished I had spent the time before I started getting rid of the classes I needed to take for a degree I was working on, and wrapping up some other obligations, instead of assuming I could handle my usual life-load.
I think it’s very important to pare down to the absolute essential things that you have to do, and get rid of absolutely everything else. You should not be taking care of anyone or anything, you should be free to focus on what you need to get through this difficult time.
I was lucky enough to work at a place where my colleagues donated their sick time to me, so I didn’t lose my job. I could work for 2 hours on a day I felt awful, or work from home, and work full days if I felt well enough, which I often did toward the end of each chemo cycle, so if you are that lucky, take advantage of it. If you must work, get rid of absolutely everything extraneous, so that you have the most energy possible for yourself, and can give what’s left to your job.
5) Get help
One of my life issues, before cancer, was an utter inability to ask for help. Robyn and I tried to do everything ourselves, which really meant Robyn tried to do everything by herself, and I struggled to ask others to do things for us. I really had to learn how to do it. Barrie can probably tell you how she set up the circle of help that was there for her and Linnea. That is just such a smart idea especially if you can anticipate what you will need. People in our circle wanted to help–they just didn’t know what to do, and often did things we didn’t need, and sometimes we didn’t even know what we needed, so we couldn’t even ask.
What I wish we had done was gotten someone to feed Robyn (since I could care less about food and the smell of cooking bothered me, she almost starved); someone to help with cleaning during times I was well enough to be out of the house; someone committed to shoveling when it snowed. We had great help with dog care. Do you have a partner? Someone should be “assigned” to take care of her, not only so she can take care of you, but because she’ll be going through her own simultaneous cancer experience with you, and will need that support.
6) Food during chemo
I laughed every time I looked at the pictures of meals-to-eat-during-treatment in the National Cancer Institute brochure on cancer nutrition. They like to give you these at the oncology offices. I wanted absolutely nothing to do with food during chemo, and the idea of eating actual meals to keep my nutrition up was just ridiculous.
Your taste buds might (temporarily) change. Your sense of smell might become very enhanced, so that even cooking food in the house is awful. (We rarely cooked anything, because it all smelled too intense to me. Robyn was often up after midnight just to clean, because I was so sensitive to the smell of cleaner.)
As with everything else in this experience, do what you know is right for your body. If someone tells you you have to eat a macrobiotic diet or you’ll get cancer again, but your body rebels at anything green, don’t do it. I ate white food. And some beans, I think I could handle. I remember that if it was white, or covered in cream-of-something soup it was safe for my stomach, French toast, mashed potatoes, Progresso chicken and rotini soup (for some reason), lots of fruit and yogurt smoothies. Depending on where I was with chemo, Robyn could sometimes chop one broccoli floret into miniscule pieces, and mix it with tiny pieces of turkey in some rice. I literally ate like a child, like ¼ of a cup of food at a time. Pudding. I ate pudding.
Again, I had friends who ate full meals, and gained tons of weight, though they weren’t on the same chemo as I was, so there are certainly people who will disagree with me. I really feel anyone going through chemo should just eat what feels good, and to not worry about nutrition or changing diets. You’ll have enough going on with your body without worrying about someone else shoulds. There will be plenty of time for dietary changes, etc. later, if you feel that’s right for you. But if it’s your mom’s pseudo-beef stroganoff recipe (the ground beef and cream of mushroom soup, kind) that gets you through, then eat that.
7) Do what you want/know is right and get what you need
I wasn’t exactly a difficult patient, but I didn’t really give a rip about appropriate protocols. I knew I needed to go to Florida between chemo and radiation, and have some relief from the cold weather and see some manatees. My doctors wanted me to start radiation right away — a few weeks after the last chemo — and even though I told them I wouldn’t be doing that until I came back, I think they were shocked that I truly did that.
I wound up having to have tattoos for radiation, since they wanted to get my machines all lined up and everything before I left, and that was something I wouldn’t have had to do if I’d followed the rules, but it was worth it to me to get that break I needed.
Likewise, they wanted me to start tamoxifen right away, but I was having trouble with my periods, and wanted that straightened out, first, so I could tell if the tamoxifen was causing particular side effects that were endometrial-related, later. I simply stood my ground and said I’d start it when I wasn’t bleeding anymore.
People (who aren’t going through cancer treatment!) like to tell you to do exactly what the doctors say and follow the rules and do it by the book. I’m telling you this, here, in the event it is helpful to you, later — if something doesn’t feel right or you need more time, simply stop. Tell the doctor you will think about it overnight and let them know. There’s really no rush, and it’s your body and your quality of life, too. When my oncologist finally realized I was serious about going to FL, he allowed me to have Neulasta after my last chemo (which they don’t usually do), so I could recover more quickly and be well enough for the trip.
8) Organizations/Retreats
Are you interested in cancer-related organizations? I’d be glad to give you contact info. We subscribed to CURE (it’s a free, monthly magazine about cancer and related issues, always has something real and useful in it, in fact, I still get it); I get Y-Me’s newsletter (they are a support network, they have a very interesting approach); I went on a wonderful retreat at Sunstone Cancer Center in AZ after my treatment was over, and it was a turning point in my healing. A fantastic place, and it was surprising to me, because I wouldn’t normally have thought a retreat with other people who had cancer would have been interesting or helpful, but it was remarkable.
If you would like more information about the things that were useful to me, I’d be glad to send it your way.
9) Writing
Barrie told me you are a writer and had some concerns about how your treatment will affect your writing. I’m a poet, and though I rarely keep a journal I found that I did a ton of journal writing. I gravitated toward other (for me, strange) creative outlets, too, many of them visual. But my serious work was on the back burner during my treatment, because I was simply too exhausted. When I regained my energy, however, the writing came in waves.
How much you are able to write will depend on how tired the treatment makes you, how many other demands are on you. But if you find that you cannot write during chemo, please trust that it will be the most temporary of conditions.
ACUPUNCTURE has been proven to help with the nausea brought on by chemo and to rebuild the immune system. It’s recommended that you have at least one session PRIOR TO your first chemotherapy treatment, and once every week during treatment. See if there is an acupuncturist affiliated with your hospital or cancer center who has experience working with cancer patients if not breast cancer patients in particular. Acupuncture was a life-saver for me on many levels and I cannot recommend it enough! At the very least, it is a deeply relaxing experience. Your acupuncturist might also give you a MOXA stick for warming key pressure points on your own daily–this can be made into a relaxing, healing ritual for 20 minutes out of each day. I also found that a 40 minute Tai Chi routine–simply warm-up exercises and Tai Chi “wash” before each chemo session helped me to feel more ready and relaxed. (I read somewhere that vigorous exercise isn’t recommended directly before because it will give an inaccurate read of your blood count, which they need to have an accurate read of before each chemo session.)
BACTERIA can be kept under control on cutting boards by cleaning with a combination of peroxide and vinegar. Because of our immune systems’ being attacked by chemo, it’s recommended that you carry around some form of anti-bacterial lotion, especially whenever you are in public. Purell actually makes a belt-loop holder for their containers which I found very useful. Also, Neosporin makes a great carry-case with anti-bacterial gel and bandaids that you can attach to your key chain (sad as that might sound). If you are at risk for LYMPHEDEMA, as I am, it’s important to medicate and bandaid any nicks or cuts that might appear on the hand of your surgical arm.
Most cancer centers offer the services of a person with the unfortunate title of BREAST CANCER NAVIGATOR. This person can be an indispensable source of information and support. An especially important figure because you can also ask her things you might not feel comfortable asking your doctor.
Chemo can make you feel very COLD while the drugs are being administered. There are lots of theories for why this is. Recommended: bring your own blanket to sessions, and dress in layers.
If you can stand it, consider running a COLD shower after a HOT shower–it gets the circulation going which can help in rebuilding cells, make you feel energized, and even help with the feeling of nausea.
CRYING can have a de-toxifying effect. Let yourself cry.
In the weeks before chemotherapy, it’s important to try to see your DENTIST if you are due for a teeth-cleaning and/or to attend to any other minor ailments because you won’t be able to attend to these things–especially not dental work–while undergoing chemotherapy. I also visited my dentist during chemotherapy–in order to get advice and have him examine the severe and unusual mouth problems I was having. Your dentist ultimately knows more about the mouth than your oncologist probably does. Mine was incredibly helpful and reassuring. I also made a separate visit to my eye doctor when my eyes started to become severely irritated to be sure I hadn’t developed an infection.
If you feel like EATING, eating out isn’t recommended. Though I did so very occasionally.
EXERCISE if you can–it’s supposed to help in recovery and even with fatigue. I used an elliptical trainer (20 minutes a day), went for walks nearly daily, biked when I was able. All of these activities, when I could carry them out, helped to quell my nausea, and helped to distract me from the on-going mouth problems.
Cytoxan especially can dry out one’s EYES. Try to have artificial tears and saline solution on hand to re-moisturize if symptoms occur. My understanding is that eye problems are an effect both of the dehydrating tendency of chemo AND the destruction of cells. Your eyes, like the insides of your mouth and entire alimentary tract, will be trying to rebuild all of the cells that have been destroyed. As a result, some people experience more severe eye symptoms than others–the result of the eye’s cells exfoliating, as my ophthalmologist explained to me.
If you have the guts to tell people the kinds of GIFTS you’d prefer, by all means do so. Otherwise, your house may become over-run with flowers–lovely at first, but if you have problems with smell, you might discover that, unfortunately, flowers make you feel more sick during this time. My own favorite gifts were letters, music, books, the company of my friends who helped me to feel alive by treating me as myself, and the immense help everyone provided by bringing us meals and helping with errands. (You might notice that you can eat and even prefer kinds of food while on chemo that you wouldn’t necessarily find appetizing otherwise. High carb casseroles hit the spot for me). I also asked our support system in advance to pay more attention to my partner during this time and whatever she might be needing.
Feelings around losing one’s HAIR while on chemotherapy are many and complex, and there are a number of insult-added-to-injury aspects of it that can be helped by having some practical details on hand. For example, as if it’s not enough to have one’s head shaved, it can be very uncomfortable, especially in bed, to have stubble growing in (before it stops growing back altogether). The best electric razor we found for keeping my scalp smoothly shaved at this time was the Panasonic Wet/Dry electric razor, ES4025. A great little device that was a god-send. Investing in or making a night cap of some sort is highly recommended–it can be cold to sleep without hair. When hair starts to fall out seems vary from person to person: I was told it would definitely start to fall out after the 2nd infusion–it started to fall out literally within a few hours of round 2. It is highly recommended that you get your hair cut and then shaved by a professional before it begins to fall out. Shaving one’s own head introduces the possibility of knicks and therefore the possibility of infections that your body might not be equipped to fight. I was fortunate to find a hairdresser who was also a nurse! He was amazingly caring and helped me through my transition to bald. You might feel compelled to invest in various forms of head gear in advance of losing your hair. I spent over 100 dollars on hats!–only to discover that I became attached to one black baseball cap in particular that became my hat of choice during the entire ordeal. Synthetic wigs are recommended over wigs made of real hair–the latter are harder to take care of. A good wig, even though synthetic, can cost between 200 and 300 dollars. Most insurance companies will cover a percentage of a wig. You may or may not find the need for a kind of head sock to wear under the wig (available at most wig stores).
HIGH PROTEIN FOOD that helped: shakes made from Kefir (filled with probiotics that can help counter, in a minor way, the anti-biotic damage of Adriamycin) and FROZEN FRUIT: raspberries, blueberries, mango, cherries.
HYDRATION is essential but it can get extremely tiring. Finding sources of clear fluid in addition to water helps: try watermelon (even though fresh fruit is off-limits due to bacterial issues–individual-sized melons are best if available–I loved being able to get fluids this way); mix water with fruit juice; try freezing a favorite juice or herbal tea–popsicles; jello. Drinking through a straw can make the need to ingest huge amounts of clear fluids daily much easier. “Recharge,” an organic Gatorade, might be a good choice; Ensure, on the other hand, is loaded with sugar; sparkling fruit drinks can be refreshing if not over-sugared. The reasons for the hydration are fairly obvious–drinking helps to get the chemo out of your system faster, but it also is of the essence in re-building cells. Chemotherapy is also literally de-hydrating, and if you don’t hydrate on your own, unfortunately you might need to be hydrated intravenously. There are different rules of thumb about how much to drink–one guide I read determined the number of 8 ounce glasses by body weight. I drank close to 2 quarts a day, and kept a daily log to help keep track.
MOUTH PROBLEMS: some MOUTH SORES on chemo are the result of herpes if you are prone to that–try Valtrax as a prophylactic; sucking on ice chips during treatment is a standard suggestion to fend off mouth sores (it didn’t work for me); some people recommend taking the skin off of milk of magnesia and applying it to help sores heal; you might notice that the sores clear up as soon as your white blood cell count is up again. DRY MOUTH AND THRUSH: both of these were major issues for me (I also suffered from over-salivation–sort of felt like I had rabies for days on end): dry mouth can be helped by: BIOTENE (a toothpaste), and OASIS (a mouthwash). Avoid toothpastes with whitening agents and peroxide–these will dry your mouth out more. Chewing gum as often as possible helped me (try Xylichew–with ingredient xylitol over sugar–sugar suppresses the immune system and also will encourage the thrush if you have it). And sucking on sour things–again, without sugar (I tried Ricola Lemon Mints). Several months post-chemo, I still had mouth issues–including dry mouth and a condition called “hairy tongue.” Frequent cleansing with combo of water, baking soda and salt is recommended, sucking on lemon wedges to re-encourage salivary glands, brushing one’s tongue with a toothbrush, hydrating with water. Cytoxan seems to be the culprit in messing with the salivary glands.
NAUSEA can be helped in a variety of ways (in addition to the numerous anti-nausea drugs you will be given that might include Emend, Compazine, and Zofran taken in combination with each other in highly regulated ways. Jean made a chart to which she taped the anti-nausea drugs to keep track. (The intricacy of taking these drugs at the right times of day and night made my head spin). I found that ginger sweetened with plum juice found in Asian markets helped me immensely (even though it sort of broke the no-fresh-anything rule). Peppermint tea also helped. Major side effects of anti-nausea drugs that I experienced were crashing headache (from Zofran) and the worst constipation I’d ever had in my life. Prunes and a natural laxative resolved the problem in a few days.
Most people on dose-dense A/C must receive shots of a drug called NEULASTA following each chemo session (usually the next day). ALWAYS VERIFY what you are being injected with. Mistakes do happen, and you have to be aware of what’s being administered even if you’re feeling out of it. My understanding is that oncologists are no longer using hemoglobin boosters if you present with low red blood cell counts (anemia). Evidently, the hemoglobin boosters were causing too many side effects. I was anemic by the time of my last session but luckily not so much so that I needed a blood transfusion. It can take a long time (weeks, months) for one’s blood counts to return to normal, but they do, in time. I also wasn’t aware that I was anemic–for whatever it’s worth: I traveled to New York and gave a reading at the time that I was anemic. Neulasta can cause some bone pain–it’s one of the signs that it’s doing its work: stimulating the bone marrow to produce again. The bones most likely affected (the ones you might feel pain in) are in the hips and thighs. My Neulasta pain usually only lasted a day or two and was treatable with ibuprofen (if your stomach can handle it).
Depending on a variety of factors, you may need to have a PORT installed in your chest for the administration of chemotherapy. More and more, ports seem to becoming the order of the day. The rationale is multi-fold: if the chemo nurse examines your arms and can’t find enough viable veins for treatment, a port won’t just be recommended, but required; adriamycin is especially toxic, and if it leaks out of vein, because the vein is weak, it can cause serious damage to surrounding tissue; the chemo has the effect, in the long run, of wearing the veins in the arm down, or weakening the veins, and if you only have one arm available (because of axillary lymph node surgery in the other arm), the number of possible entryways for the chemo will be cut down to nil. I found the experience of port surgery to be traumatic, though I know a lot of people who say they did not. If you think you’ll be uncomfortable with hearing the doctor describe everything he is doing as he installs the port, you might want to ask to wear headphones and listen to music while it’s being installed. I wish I’d been offered this option. I was given a mild sedative but was awake for the procedure and went directly to my first chemo session thereafter. Port tips: before and sometimes after each chemo session, the nurse will clean the port–to be sure it’s not clogged and for a clear blood return–by injecting Heperin into it. Some people experience their mouth filling up with a hideous taste when Heperin is injected. A simple holding of your nose while the injection is going in will bypass this sensation. Some people find that numbing agents–a cream you can ask your nurse about–makes the entry into and out of the port less painful. I didn’t find the pain bad enough to use the numbing cream, but it was good to know it existed. It’s your right to have the port removed when your chemotherapy is finished (after you feel recovered enough to undergo the procedure), though your doctor may suggest that the port remain in your chest for up to a year. It seemed to me that keeping the port “in” served the medical bureaucracy and had nothing to do with my well-being. I wanted nothing more than to have it removed, and was able to become “port-free” a few weeks after my last chemo session.
Your SLEEP may be disrupted in numerous ways. Pre-medications that are administered just before the actual chemo infusion can have the side effect of making one slightly high and/or unable to sleep, especially on the first night of a chemo session; later in the course of treatment, you might experience hot flashes from chemo-induced menopause. Many women experience more severe hot flashes at night. The only thing that helped me with the drug-induced insomnia were listening to CDS made by a HYPNOTIST at Women and Infants Hospital in Providence, RI. See if there is a hypnotist on the staff of your local cancer clinic and if s/he has tapes or cds available. I treated my hot flashes following many of Susan Weed’s suggestions in her book, Breast Cancer? Breast Health! (things like drinking oat straw tea before bedtime, and breathing in the aroma of essential oil of basil–though I did not do these things until long after finished with chemo, since I wouldn’t have had the stomach for either at the time). You can bypass the goddess stuff in this book, and move directly to the material on holistic approaches to every step of cancer treatment. This book was of enormous help to me while I was going through radiation therapy (since I had resumed my appetite by then and was able to eat the things that Weed suggests). Re hot flashes again: according to Weed, we lose potassium, magnesium, and B-vitamins as a result of night sweats from hot flashes, so it can be important to take a daily vitamin supplement. Not while on chemo, however: the ingestion of herbal or vitamin supplements should be suspended during chemo treatment. Seems the medical profession just doesn’t know enough about how chemo and herbal supplements will interact with one another. And you don’t want the nasty stuff not to be able to do its nasty business, I mean the chemo.
SENSUAL or sexual pleasure. I really don’t think a person has to feel she is dead to the world during chemotherapy. It seems to make all the sense in the world to me that touching, being touched and orgasming can only help! There seems to be a taboo on discussing female desire, any form of sexual pleasure, and chemotherapy together.
There are differing opinions on TRAVEL during chemotherapy. Generally, it is suggested that one avoid travel on the days when your blood counts are at their lowest. Ask your oncologist to explain at what point in the two week cycle you can expect for your immune system to be at its lowest point. Toward the end of week two, it’s usually considered ok to get on a train or plane. I made four trips to give readings during my four dose dense rounds–always and only at the end of the round, during my “up” days. Luckily, I never got sick or contracted an infection of any sort. Though exercise is recommended if you feel up to it, it’s NOT recommended to go to a public gym. I invested in an elliptical trainer that I purchased on Craigslist before the start of my chemotherapy.
A few tips for radiation treatment: my physical therapist recommended Elta brand moisturizing lotion. It can be special ordered at any Walgreen’s pharmacy. I also used Aloe Vera directly from an Aloe leaf. I applied these lotions before bedtime daily, and directly following treatment, as I was getting dressed in the locker room, each day. As you get further into the treatment, it is recommended that you apply healing moisturizers such as these more than once a day. I also experienced some mild esophageal discomfort that went away in time. Don’t be surprised if you notice a burn mark or perfectly round circle of tanning on the skin on your back during radiation, even though it is ostensibly the “front” of your body that is being radiated. When this appeared on my body (Jean noticed it), it was explained to me that the radiation “goes right through you.”
If you’re a numbers person, here’s a chart detailing what a normal blood count should be:
Normal Complete Blood Count
Red blood cells
4.2-6.0 million/mm3
Hemoglobin
12-18 g/dL
Hematocrit
36-52%
Platelets
150,000-450,000/mm3
White blood cells
4,000-11,000/mm3
Differential White Blood Cell (WBC) Count
Neutrophils (granulocytes) “Segs” (or Polys or PMNs)
40-60%
Neutrophils (granulocytes) “Bands”
0-5%
Eosinophils
1-3%
Basophils
0-1%
Lymphocytes
20-40%
Monocytes
2-8%
Absolute Neutrophil Count = total WBC x (% “Segs” + “Bands”)
Source: Barker GJ, Barker BF, Gier RE. Oral Management of the Cancer Patient: A Guide for the Health Care Professional (5th ed.). Kansas City , MO: University of Missouri-Kansas City School of Dentistry , 1996