Principles of Medical Ethics 

Before You Donate

Think very seriously before donating to any breastcancer organization, or fundraising program until you read their Annual Report to see who their top contributors are, and if they have a product that appears frequently in the message the organization sends to the public. That would be unethical and its illegal. The same applies to a request that the public buys products, but does not receive a "donor receipt" for tax-deductible purpose. Read any and all food labels that breastcancer "non-profits" are promoting to raise money. Some organizations tell the public to help them raise money by asking you to visit their websites, but that only gives them "hits" to increase their sponsors.

Another tip, "signing" an online Petition is not acceptable, so don't fall for such antics. An ethical non-profit, or professional will not request your visit to their website, nor use "cookies" placed on your computer when you visit their site.

Purchase the Breastcancer Postage Stamp, the Post Office will always give you your charitable deduction receipt. Its a valid form of fund raising.

PREPARATION PLAN FOR TOTAL HEALTH

I learned a great deal talking to nutrition department chair at a major university in Michigan, my dentist, spiritual advisors (of all faiths and belief systems), friends, those who had chemotherapy before, and I would suggest that anyone begin reaching out for accurate information, to at least have some type of plan in place whether it is followed or not. Eventually, fatigue sets in during chemo, and the best laid plans go out the window, but they'll come back when you are ready to start them over again. Twelve hugs!

Step One:

Dental examination. I phoned my dentist and he agreed I should be seen early for cleaning. The insurance company authorized it based on the cancer diagnosis, except for a bite-wing x-ray. During this time I asked my dentist what I could do to protect my teeth and gums during chemotherapy.

He told me to get some topical fluoride and apply it daily. Once two weeks have passed it will be absorbed into my tooth enamel and it will help protect my teeth. He also recommended daily brushing and if I'm too sick to brush, to rinse my mouth with a saline rinse four times a day if I could. He did recommend a mouth wash, too but my oncologist's recommendations said no alcohol-based products. So, I made a chart designed to include dental protocol.

Step Two:

Nutrition. It was apparent to me that people don't do well nutritionally who have cancer and treatments for cancer. I looked up a nutrition expert I knew from a university I graduated from and found him in Michigan. I wrote him a letter. He phoned me and referred me to The Omega Plan  and said he would mail me some other materials. I live by that book, to this day.

Fiber, Soy Products, Fats, etc. . .
I have always been on a high fiber, low fat diet and my chemistries were great so I decided to try to augment with new data but be as wise as I could tolerate doing. However, I know that when one is sick you just have to do whatever it takes to cope.

I decided to write down what I ate on my daily chart, and made a nutrition space for each day. I found my oncologist's office very helpful with everything I ever needed help with, too. And, I certainly ended up eating some things I never thought I would eat! 

I did know that the type of cancer cell that grew in my body (note, I did not say "my" cancer cells) was Estrogen and Progesterone receptor negative and HER2neu positive so I did not eat any soy products (which are known to stimulate, and/or 'act' as estrogen in the body, and spread the cancer (how dangerous for women to be told to eat "soy products" now by some breastcancer organizations--look at their Annual Reports to see the contributions from the soy producers, etc.

One of my surgeons advised against soy products and Tofu, in fact she was very emotional in advising me, "No, no, no...don't eat Tofu..." until I told her I'd already put two and two together once I found out I was ER negative (meaning that ER and PgR cells receive and absorb estrogen and as estrogen would do, causes them to spread—no wonder hormones always made me sick ).

Once again I realized my body knew what it needed to do to stop the malignancy as best it could, while the nasty malignant cells were changing every gene they could to survive. Since we know breastcancer is present two to three decades or more, before detection by mammography, it all made sense.

I have always eaten Tofu but not as a special, particular food, just occasionally in stir fry, soups, etc. to replace red meats, but if I were you, I'd use moderation until you know what your cell type is--even if you don't have a breastcancer diagnosis, if its in your family, use "moderation in all things, including moderation." ~ Dr. Richard L. Bruno, Director, Post-Polio Institute.
 

Step Three:

Spiritual. This is a challenge for me to write about for you. I think it's because I've always viewed my spirituality as separate from religion. "Religious" always seemed to disappoint me—too human! I have some very basic, concrete beliefs for myself and they came to the surface, as well as the strength and help when I needed them. It was a blessing for me to have this opportunity to grow spiritually and to have the help that I've had from a few people, including the fact that I feel very confident about my doctor's own ethical and moral stance. I think that is all very much a part of this protocol—seeking and trusting until you find your answers.

Spiritually and emotionally, one may have to accept regression, being like a child again. I've had to give up control and the false belief that my mundane problems (including nausea, pain, fears) were too trite to take to a Higher Power, even with me.

It has been a challenge for me, believe me. It has also been a challenge to work on putting myself first and not pleasing everyone else. That has been my job, my career—to care for, produce, and please others. Now, I've had to really take care of me: my body, my mind, and my soul, first and foremost. Willing to accept the consequences that may include losses, which are materialistic for the most part, and really have nothing to do with whether I am a living human being.

Step Four:

Fitness.   Simple! I decided I had to walk every day, even if I was so sick I could only walk a few feet. I've even walked in circles around my home indoors. I decided to keep a "check" on my quad strength (I had polio as a little girl and my left side weakens easily if I don't do aquatic exercises), so each morning and night, almost, I'd do short leg raises to see how I'm coping with this inactivity. That's it. Soon I'll be able to be back doing more.

P. S:  4 months after chemo I walk 2.5 miles and do 1 hour of aquatic exercise a total of 4x/week. Still working on "Fitness."  A local hospital had a great aquatic program open to the community in their rehab department. Give yourself time, it doesn't 'show' for eons like it did before "BC."

Step Five:

Recreation. I planned to watch one TV show a day/night that was entertaining, non-violent, and rarely watch the news! It's helped. Every time I watch the news, I get 'down,' or feel intolerant or worse, ignorant.

Now, several months 'down the road,' I am just realizing that I could not stop 'doing' something. I am now learning to just relax, read, watch TV, not always writing, planning, hoping, etc. I'm learning to 'be' where I am at the moment. Learning, mind you, not yet there.

KEY POINTS, in hindsight

Be very clear about your doctor's orders. Keep your Cancer notebook with you every day.

Quickly tell your doctor of any side effects, discomforts, pains, symptoms that you haven't been informed about ahead of time. Do NOT take any aspirin, non aspirin drugs unless you have been told to do so (I did and someone forgot to tell me not to take such if I spiked a fever).  (see Guard Against Infection)

Do not eat soy products unless your doctor approves (you may not be allowed to have estrogen. The 'soy' issue is being debunked as of summer, 1999 but remember its an "industry" and contributed vast sums of money to breastcancer organizations—so they really cannot say anything negative about it, can they?

Drink, drink, drink, all the liquids you can get down which may be all but impossible if you are sick. If you cannot drink 6-8 glasses/day of some liquid tell your doctor. Stress it!

No matter what, do not judge yourself. "Take this time out to focus only on getting better (my oncologist)."

Plan early for extended sick leave, disability, social security, etc. for the long duration in case you need it. Protect your job even if it means to get legal counsel. You are eligible for disability with cancer, that is federal law, and Social Security is very kind when you phone them.

Keep records of everyone you speak to about your benefits, and the dates. You may become so ill you will not be able to work, or even think of ever working again. Just be open to whatever it will take to get beyond this period in your life.

Stay in close communication with your insurance provider, and ask to be assigned to a Case Manager. They were a source of comfort and reassurance, for me.

Tell your closest and most dependable friends and family that you will need increasing emotional support with each treatment. They may need to help YOU focus on "just the next step," or next hour. If you are not fully supported emotionally and physically by your oncologist find another one, fast.

It's not unusual to gain weight during chemotherapy (thank God, I didn't. But I did afterward.) Note: several months after this was written I found out that a high percent of women gain weight in the 6-8 years before are diagnosed with breast cancer, and it is because our bodies go into a "fight/flight response" and the corticosteroid level rises—so we don't burn food but store it for the 'FIGHT!" Lovely!) And, I had thyroid cancer 2 years prior to my breastcancer diagnosis.

If you live alone, you can do this, but let your oncologist know. The best people to have around you when ill are those you feel comfortable with in your underwear!

Don't judge your feelings about the people around you—as time goes on you may become more introspective, withdrawn, you're tired. Tell people when there are topics you don't want to hear or discuss. Mine are the "3 Cs," cancer, chemo, cures, and, I don't want people making decisions for me, unless I ask for their help. This is enough loss of control.

Know I'm praying for you—and so are my friends!

GUARD AGAINST INFECTION!

This may not seem important to you and I do not think enough emphasis is placed on this (my oncology group repeatedly reminded me of cautionary steps to take) from what most women have told me. During the time that you are on chemotherapy, and/or radiation, guard against infection. Here are some pointers:  

Always wash YOUR hands before touching your food, dishes, mouth, nose, eyes—we are usually the transmitter of our own infections. You know how, singing Happy Birthday twice and really soaping your hands and using hot water, etc. Fun, eh! Yep, enjoy birthdays, anytime you can do it. 

Do not use a 'dish cloth' in the kitchen for counters, dishes, etc.  Use disposable paper towels.

Keep a weak solution of simple household bleach and water in a container on every sink in your residence (1/8 tsp./quart is plenty) and after anyone washes their hands, you too, dip your hands in this solution and rinse, and dry with paper towels.

Ask people to not visit you during the times you are most likely to contract an infection (usually the 2nd week after infusion or treatment) . Your Oncologist should be telling you this ahead of time, but if not ask. Your Oncology infusion RN is a great resource.

Just before your 'high risk' time (above) remove all live plants and planters from your home (set them outdoors, or have someone take them). This killed me because friends sent me flowers and plants all the time, one every week. I had to ask they send 'silk ones' or none until later.

Tell anyone entering your home to wash their hands—Put a sign up they will see when they walk in the door.

If children come in during your high risk time, I would wear a dust mask that hardware stores have, and keep the children 6 feet away—they seem to understand much better than adults. Tell young children "a crib's distance away" and they'll get the message. Remember, paper masks are not good after one hour of wear.

Use the bleach solution for cleaning your bathroom and kitchen, phones, computer keyboards, faucets, knobs, and lots of hot soapy water, too. Do not rely on antibacterial soap or the "handy" hand disinfectants. Many now have instructions that it has to be rubbed in for at least five minutes, or something like that. Alcohol is not an alternative, nor is hydrogen peroxide. Hot, soapy water, and bleach is effective against most organisms.

Anyone entering to care for you should wash their hands, also. I had to constantly remind my home health RNs.

Your physician will tell you how high your temperature can go before you call in, but mine is always 97 degrees, so I had to act accordingly. Generally, they don't want your temperature to rise more than 1.8 degrees from normal, but you'll know if you start to shiver.

Do not eat fresh anything during the infectious time. That nearly "killed" me.  Also, no shell fish, cheeses, or meats unless cooked until they aren't worth eating.

This is serious! Chemo and radiation further suppresses your immune system so take this period of time during each treatment very seriously.

PRIOR PREPARATION:

Had I only known. . . Every oncologist office should give out a Chemo survival kit!  Remember, this is written when I am 75% through chemo. Next treatment, I may have to add more. I would have gone shopping or sent someone out to get any of the following for me:

• Ice crusher (buy an old-fashioned one at Goodwill, or give willing friends the errand to find one for you).

• Cotton pillowcases, and sheets, no foam or synthetic anything. Again, get used items, or call the American Cancer Society to see if they have some things for you (they are virtually hopeless when it comes to helping cancer patients). Reason: You'll have sweats/chills/be cold and clammy, then HOT. I never perspired—ever, until Chemo and Tamoxafin (which was stopped when my cell analysis was completed because my cancer cells were Estrogen/Progesterone Receptor negative (ER/PgR negative). When I had a total hysterectomy, I did not have hot flashes, I walked fast every day, and avoided them.

• Satin Pillowcase: You will find this helpful when your hair begins to fall out. It won't get 'caught' on your pillowcase. I had one loaned to me. If you put out the 'call' a lot of these things will probably be available from others.

• A sleeping cap—in cotton, and a cotton terry cloth lined shower cap: If you have Adriamycin (the bright red one) as one of your chemos, you'll lose your hair for sure. Your head will freeze. Any fan or AC blowing on you at night will wake you up (I slept with the sheet over my head for weeks after my son moved my bed across the room in line with the AC vent to avoid the cable outlet where the bed used to be).

• Get a terry lined shower cap for the bathroom, because when you are IN or just out of a shower, your head freezes. Don’t recoil, well, go ahead, there are worse aspects of this and keeping your head warm is important. The American Cancer Society has a booklet (TLC) with head covers, turbans, etc, in it—but beware, the less expensive ones are inconsistent sizes! For example, the plaid in "Honey" style is tiny.

• Many cotton sleep wear sets or T-shirts: I found some very inexpensive ones for my first surgery—glad I did! Living in the SW everything I have is generally cotton, anyway.

• Cotton bandanas: I found these in the Men's Department at Target for about $1 each, in many colors (2/package), and patterns. They are easy, comfortable, and quick. I resisted wigs. So far, I can't stand them, they are hot, bother my temples, and just are not me. I may change later on when I have more time to think about getting hair that fits me (short, swimmer's style).

• White Vinegar: You'll need white vinegar (yes, plain old white vinegar) by the gallons. It is as good as bleach when it comes to killing organisms (bugs/germs). So keep a bowl of it around the sinks area to cleanse your hands (and everyone else must do this to), and especially during your immune suppressed days (generally the 9^th day after your chemo this begins, but your doctor will tell you—or better be telling you these things...if not, arrange for him or her to have three doses of your chemotherapies after you are through). I found it helpful, for family and friends, when they visited. Once you've hit the wall white cell-count-wise, you'll be very careful about keeping "germs" away. Most of the time, they get to YOU on your own hands which go into your mouth, eyes, nose, etc. So, try to keep your hands away from your face, if they are not very, very clean. You'll get used to constant hand washing, and I do keep a sanitizer that requires no water in my tote bag—but remember, it is NO replacement for scrubbing, and takes five minutes (5) of rubbing it in, but I also take folded paper towels soaked in vinegar solution in a plastic bag when I go out of the house. White vinegar may be put in a vase with a pinch of sugar, to keep fresh flowers alive longer, and the water from becoming turbid...it will kill ants, fleas, and other troublesome insects, so keep it on hand.

• Paper towels, for both kitchen and bathroom areas. Remember, if you dry ANY dishes, they are cleaner if you use one paper towel for each dish! And, better to let drain dry or dry in a dishwasher (dishwashers are not for sterilizing, unless the water temperature can get up above boiling point, 212 ˚F and none do). They do clean however.

• Toilet Paper—plenty. Scott's is the most long-lasting.

• Fabric Softener to avoid ironing, but, CAUTION, using it on bed linens will make the sheets less absorbent of perspiration and you less comfortable. The best use for it, IMHO, is for soaking burned on food off of pans. Yep, it works. Its good for placing under car seats, etc. when you want a nice scent, too.

• Double-sided flannel covered waterproof sheeting fabric to put under your bottom bed sheet. Buy this by the yard, and cut it to fit the entire half of your bed where you sleep. Keep the other piece handy to change. If you are receiving Cytoxin (chemo) it may cause bladder frequency, and so do IV fluids, but it can also cause severe constipation (so be prepared for that in advance with prune juice, and lots of roughage and fiber in your diet when you can eat well. By this stage of the game, I've noticed this and could have used this sheeting, which I used to buy at fabric stores for my infants cribs.You do not want to use plastic underneath your body in bed at night, even under a sheet—you'll melt!

• Body lotions/oils. I have found using canola or olive oil while I am still wet from the shower, directly on my skin and scalp has helped cope with dryness. I have also used plain petroleum jelly, not Vaseline, and during the day I've found Eucerin Plus a helpful addition to my tote bag. I keep it in a zip lock bag with soda crackers.

• Thermometers: if you can afford one, a digital thermometer would be great to have. I already had two, and they are now strategically placed around my home and well-used. I seem to spike fevers all the time, about 99.2 to 99.8 from my first day of chemo, through my 17^th day.

• Remote control: for your TV if you can afford one (primarily for shutting it off or shutting off commercials).

• Emery boards: lots of these. If you get steroids, your nails may grow, well. The one time I had a steroid my nails grew for the first time in my life (but everywhere I was touched I had enormous bruises, too--so no steroids for me). You're advised not to cut or bite your nails, so that you don't get any open sores, so take that seriously.

• Johnson's Baby Magic: if you have any bowel problems during chemo, such as constipation or diarrhea, this is not irritating to use as a cleansing lotion. Handy Wipes, etc., contain alcohol, an ingredient chemo patients are cautioned to not use.

• Desitin (Creamy): this zinc based product provides great relief for raw skin areas, which may break down from the problems stated above, or small skin sores.

• Hanging wall calendar/refrigerator wipe off board: It helps to cope with stress to have things visibly at hand.

• List of phone numbers of your closest friends who can be called by each other in case you need help/sitter/ errands.

• Make a list of things for helpers, to cope with your home during times they are in the kitchen, etc. For example, I don't have any dishes that can go in the microwave, and my flatware is like my dishes, raised my children on the same sets. The flatware is silver plate—old but. I like it. If people are coming into your home and you leave the door unlocked for them, and have a security system, be sure they know the code.

• Telephone Sanity!  Use a "ring once" signal for people you definitely want to answer the phone for. They can ring once, hang up and redial you. That way you'll know it's one of a number of people phoning you. If you can afford to add a Smart Ring to your phone, or care to, it does the same thing, rings a certain way. I've found a recorder is better than the voice mail, because I can also screen my calls if I'm in another room, or just too tired, or sick to respond.

• Create a space in your drawers for the new headdresses you'll accumulate: turbans, bandanas, caps, etc.

• If you're going to lose your hair, save a strand to match for a wig, or later if your color does not return the same. Posterity!

• All those cans of spray, moose, etc., may be put away (I use mine to "hang" two wigs I won't wear!!!).

• Get rid of any and all floor mats and scatter rugs that may slip or trip you up. You may become clumsy, or not have complete feeling in your feet or hands once in a while (this is peripheral neuropathy, and will not go away in most cases).

• Small pillows (toss pillow) with cotton removable, washable covers. These come in so handy after mastectomy and breast surgery. In the beginning you have to sleep half sitting up and you can be propped with these added little pillows and carry them in the car with you when you go back and forth to the doctors. It helps to have these under your arms, at home post-op.

• Get tucked into bed. Once you've taken pain meds have your caretaker tuck the bedding in tightly on both sides and your arms won't move as you sleep which can awaken you with pain. You deserve to be "tucked in."

FOOD AND DRINK:

(Tell your oncologist's office about your smell/taste hallucinations!)
I've had some unusual taste changes and they come and go. For example, someone made me some gelatin and one taste of it and I thought they had mistakenly dumped salt into it by the cup. It did not taste that way to anyone else. This chemo treatment, I though my cranberry juice had been poured into a glass previously filled with gasoline! My daughter ran in to get it only to find out it was fine. I smelled onions and pickles in my house and I know it must be a hallucination because a recent infection has left me "stuffy." (Note: Eight months after chemo now, and I still have the metallic taste in my mouth 50% of the time. I drink more and carry the little mints with me).

During these times, you have to be very careful of what you are eating! Be certain you eat no raw fresh foods (vegetables, fruits, sprouts, dried fruits too), not spoiled or rotten, or moldy. You may eat it just because your taste buds are off.

• Frozen Popsicles: Lots of these! Sometimes, that was all that I could eat.

• WholeFruit brand & sherbet (or whatever that real fruit sherbet like iced dessert is). The strawberry I wouldn't and couldn't touch at first because it is red (those of us who get Adriamycin may develop an aversion to the color "red.") and my daughter who introduced me to this foodstuff didn't buy any. But once my oncologist's infusion nurse began hiding that chemo from me I was alright. I seemed to forget and stop retching. I did notice my oncologist's tie one day—a Tabasco print—RED! It didn't make me wretch, fully, though (good thing & he felt badly about it).

• Gelatin with banana (potassium).

• Gatorade or other sports drink, in moderation, diluted with crushed ice.

• Pasta, noodles (plain).

• Olive oil (unless you don't like it)

• Tomato sauce (mild)

• Hot cereals

• Honey, jams, jellies.

• Canned fruits, applesauce (if you like) for immune suppression time, or yucky times.

• Juices: good to add as a splash to water drinks, too.  I never drank juices, per se, but now I do, and favor the pineapple, apple, and cranberry. Citrus may irritate your GI tract, so be careful.

• Candy: especially plain, little hard candy.

• Sometime of us crave pasta or mashed potatoes (note: In 2002—I can't stand to eat any pasta now!)

• Watermelon and Kiwis (if you like them)—greater anti-cancer foods, and heated tomatoes.

• Note: if there is something you don't like to chew, pop it in a blender to make liquid drinks like watermelon, banana, frozen (or fresh) strawberries, orange sections with the white still on them (the frozen berries or ice, make the drink thicker). If you are constipated its a good time to throw in some Metamucil daily, too.

^{COPING WITH SIDE EFFECTS}

It appears to me, from my reading and speaking with women and caregivers that side effects vary according to the chemotherapy drugs used and their dosages. I do know that anyone receiving Adriamycin will loose their hair and my doctor prepared me for this but I fell apart anyway. Also, about 60% of pre-menopausal women experience "hot flashes" but I've had surgical menopause 17 years ago, did NOT take estrogens and I still have horrible hot flashes. . . feels like my head's going to blow up and I sweat, if that's what one feels like. You cannot listen to women who've had chemo more than a year before you for physical reactions, because this is all so different today. Coping is important, but that does not mean you cannot try and get relief.

The emotional side is difficult, too. There's so much tied up in having chemotherapy it's hard for me to figure out if it's my vast lifestyle change and the trauma of the diagnosis, surgery, illness, pain, or the chemicals. Eventually, I decided not to care. 

The emotional side is there anyway. It just makes sense however to keep your oncologist informed about how you "feel." I think mine has heard it all and he's completely understanding, and allays my fears about going nuts. In fact, I kind of feel if I do he'll still be my doctor. I've found that with my very close friends, too.

One scary part for me was the uncertainty of my well-being in the weeks after my treatments. I usually feel horrible, and am sick, and just when it appears to let up and get under control the other symptoms and side effects begin (or they were put on the 'back burner' during the crisis phase, which I call "chemo storm phase").

It was hard to plan because more often than not, I'd be too sick to answer the door, or phone, or just needed to be alone. When I had my daughters here it was much easier, because I knew they would be the gate-keepers and I could relax.

You have to approach this in the best way you can—if you've had a pregnancy you may know how the early weeks hit you if you had nausea, needed to rest, and cope. If you decide to just get through this, then do that. If you don't get very sick, can keep up your other tasks, then try that. Just take yourself from where you are at the time, and don't judge or compare yourself.

I believe that each cancer patient should have a psychologist or psychiatrist on their team, just in case they are needed. Don't underestimate the importance of your mental health. And, don't be afraid of it, either. Just pick that individual yourself. It took me nine interviews to find one I put on to my team.

COMFORT MEASURES
 

Constipation: This may be a side effect of one type of chemotherapy (at least) and/or caused by drugs for pain, sedatives, lack of exercise due to increased need for rest, or the illness of side effects, lack of fluids, and many other reasons. Whatever, let your doctor know the minute you suspect this beginning. Once it becomes severe, it usually won't help to try to attack it from the top with laxatives.

If by any chance you smell ammonia, and can't figure out where it's coming from, CALL your doctor, or you'll wish you had. It's caused by the lack of fluid in the colon, and has something to do with the liver and there's a great RX to fix this: for me it was Duphalac Liquid! It saved my life! Noting else worked and I came seconds away from an intestinal obstruction—right in the midst of a low immune time in chemotherapy!

Nothing, absolutely nothing helped me with this.  My colon became paralyzed from either the chemo or one of the anti-vomiting drugs and it was terrible. In five pregnancies I never had such an experience. We just had to wait it out and I bore careful watching. At times, the pain and the complications were more than I could bear. Thank God for the oncologists  "on call." They were responsive, reassuring, and got help to me immediately.

FEVERS:  No one mentions these blasted things, and I've been plagued by them from about 4 hours after a chemo infusion to the next one. Maybe they are prolonged hot flashes but whatever they are I've felt like a hypochondriac keeping a thermometer around all the time. I was cautioned to not let it go above 100.4, 6 and 8 (by various people in my oncologist's office) and for me that would be a whopper—mine's normally 97! During my last and worst chemo they didn't rage upward but did run 99.2–99.8.

We aren't supposed to take anything for them either, so when mine gets to be 99 I'm uncomfortable, achy, and I have to tough it out. I'm told that is the only way the doctors can tell if you're getting an infection and will need antibiotics.

What does help though is to eat Popsicles, drink sips (tiny ones) of liquids, eat crushed ice and when I've had chills I do wrap up but take the wrap off every few minutes, and/or wipe down with a tepid wash cloth—nothing so long that it would raise your body heat—heaven forbid!

They are distracting. I'll be working along at something, and then begin to 'feel funny,' and then achy, and then foggy mentally (well, more than normal!!) and bam! I realize it's a fever coming on. Mine last for hours, at least 4. They rarely go up above 100.2. I make myself feel better by telling myself that it's my great immune system reacting to reeve itself up.

FLUIDS:  Very important. I hate liquids, and always have.  The only time I could normally get myself to drink was 1) iced tea (now referred to as liquid vegetables) in a restaurant or 2) from my sports drink bottle in the car (when I have nothing better to do), or 3) in the pool when I always drink water about every 15 minutes.

If there is anyway to begin to prepare to do the best you can for yourself, begin drinking until you can't drink any more due to nausea, etc. Southwest Regional Cancer Center (Austin, Tx) doctors have been very, very kind to me, and if I called and mentioned verging on dehydration after chemo, and that I simply cannot drink, the ones I got always said something like, "Of course you can't. You're nauseated."  God love them. They briefly relieved a serious guilt trip on my part, one I've had for years, though.

After you receive Adriamycin and Cytoxin you're told to drink 1 gallon of water that day and the next to flush the chemo drugs out of your veins. That scared me!

I had to put a chart up to check off "10 oz." per hour, and make someone force me to drink up before the end of each hour. Then, I began to associate liquids with nausea because with each passing hour I'd become more nauseated.  A viscous cycle. For that, one definitely needs psychiatric help. I don't know how to help anyone with this, really, just to know you really will need to have fluids.

One thing that has helped me is to ask someone to take me, if I needed or to go myself and buy iced tea and sit and read and sip it. That way, I can get a lot of fluids in. When I need them most, though, I can't get out—I'm sick.

It has helped to add pineapple juice to a drink bottle and carry it around with me. I write down what I drink and the amounts. Never did I ever drink pineapple juice before. I've tried this with apple, cranberry nectar, and orange, too, and pineapple wins out (maybe because I've lost my taste so much). Good luck!

HEARTBURN:  If this becomes severe, call your doctor.  Mine hit about my third treatment, suddenly. It began in my throat, and felt like a fireball passing through to the end of my stomach. There's a great Rx to help with the severe forms of this called Prilosec and I will forever love the company that made it. Otherwise, a Tums should help, or a swallow of Milk of Magnesia. Don't overdose on anything. (Note: I think about the end of 1999, Prilosec was removed from the market— thank goodness I never needed it more than six times.)

MEMORY LOSS: Every person I've spoken to about chemo told me that they experienced memory loss during the treatments.  I call it short short term memory loss, because it would affect me that way. Often, I could not remember whom I had seen 6 hours before and certainly not recall names. I've had a head injury and know what memory loss truly is, so this scared me a lot! When I spoke to my oncologist about it, and he did some background work, and then talked to me. He relieved my worries, a lot. However, I also developed the stance that "So what?" I've got to get through this chemo, anyway.

I began to joke at myself about it and would have to soften other's dismay by saying, "Oh, it's called 'Chemo-brain,' " and they would completely understand.

One day, a woman who'd been through chemotherapy told me the extent of her memory loss, and that she had actually heard it called that. Good. My infusion nurses call it that, too. I really don't know if there's anything you can do about it. I can tell you this: don't put an ice bag on your head to prevent your hair from falling out—I was told that it also constricts blood vessels and the chemo doesn't fully reach brain tissue. YIKES!

It may be that for me, I'm certainly not conducting the same life I did "before cancer," and I've certainly been through a lot of emotional trials, pain, surgery, stress, and change.  No wonder. I pray I get better in this department, but if I don't that's okay, too.

NAILS: My nails began to develop vertical furrows at the end of my first chemo treatment. They grew like wildfire, however, I've never had a long nail in my life until Chemo.  At first, I didn't know steroid were given in the chemo, but when I stopped getting the steroid with the chemo (I found out that Decadron was "included" in the treatment which makes the effect easier on us, hence, so many women can say they felt "just great...we went out to dinner that night."  It was the steroid!!) the nail growth stopped, too.  Just as well.

NAUSEA AND VOMITING

Do everything your oncologist prescribes but record every pill and/or suppository, the time, how you felt (already nauseated, etc), and the result. Keep one spiral, or notebook and always date a new page.

Call your oncologist's office if you're not coping with these symptoms—don't wait! I tend to not take pills and to wait way too long to cry for help! But, my doctors practice and all the doctors were very caring and I'm sure I exasperate them.

Don't wait for nausea before taking your medications! I did that and still do during my 2^nd week after chemo. Don't you do it. I just had to see if I was still rolling with nausea, just in case I was better (all a part of denial, and anger, which is normal).

Take the medications regularly. One medication calls for every 12 hours P.O. (by mouth). I'd find it very difficult to switch from having it given IV, to orally, just because I didn't want to accept being "ill." "JUST DO IT!" This is your time to be as comfortable as you can. Your doctors will tell you, "Stay ahead of the pain," for example—do it.

Always keep soda crackers and liquids with you. This helps. It doesn't not help for nausea of pregnancy, which requires protein, but the crackers "by crackie" do help you sustain until you can get some medications, or get to a rest room.

Iced liquids. Anything over crushed ice helped me—even Gatorade which I always hated—in tiny amounts (see below)

When vomiting, or nauseated: remember you cannot take in meds or foods, it's too uncomfortable. Don't be harsh on yourself. If you can, get someone to keep you supplied with tiny amounts of fluids, or crushed ice. NOT big glasses— you'll wretch. Just very small containers (shot glass) of crushed ice with sports drink pour over the ice, and a spoon. Take tiny amounts onto your tongue and wait for it to melt. If you can, nibble on a piece of a banana, or Popsicle.

Tongue: If your tongue is dry, and coated, you're dry. If your mouth is sticking closed, you're not getting enough fluids. Often, going into your doctor's for an IV will help this tremendously. Don't suffer very long without calling for help from your doctor. They are understanding and used to it. I don't show the signs of dehydration like most people do, nor have I ever had blood chemistry changes until I was over the brink, like my white count didn't go up until my appendix ruptured (years ago). So, I'm fairly careful to go by how I feel. You may need to employ the same strategies. Let your doctor know when you feel like you need help with comfort.

Adding tranquilizers to anti nausea drugs for me was not the best idea. I became totally zoned out and could not keep track of my medication intake. That scared me, so I ended up not taking my medications. It wasn't until I hit this 75% mark that I realized what was happening to me. Ativan was part of my three drug regimen as an enhancer to the drugs when they didn't work well—well neither did I! Then it built up. I was totally incompetent to care for myself safely. Furthermore, I didn't drink, or eat. I thought I was in a coma from dehydration. If you notice any such symptoms of sedation let your doctor know immediately.

VAGINAL/BLADDER IRRITATION: as the membranes become sensitive (like the lining of your stomach) these membrane react too. At times, when sitting, I'd feel as though I was sunburned "inside." I noticed this when I was also plagued with horrendous heartburn and colon sensitivity.  Let your doctor know (most likely the nurse).

SKIN ERUPTIONS/MARKS/DRYNESS/PEELING, ETC: My oncologist warned me about this ahead of time, so I began to put either canola oil, or petroleum jelly (not Vaseline) on my skin while it was still wet after bathing. I also had to do that to my bald scalp. I would carry Eucerin Plus with me.  However, the red blotches began to appear at my 75% point and looked like "blood blisters." NOTE: I'm a red-head and have freckles (well, when I have any hair whatsoever). So this may be peculiar to my skin type.

SWEATING/NIGHT SWEATS: Were there an answer to this, I'd have found it. I've never been able to work up a 'sweat' exercising and in the past have darn near passed out in saunas trying to see if I could sweat. Now is very, very different. I've had increasing night sweats since chemo began. Now, at the week before my last in the treatment series, I'm sweating like a race horse at night, and I hate it. My pillows are done in. I'm changing my pillowcases every day. I'm cold enough with 50 degree nights to use a down comforter (but I'm always cold) and yet have to throw it back off and on all night to let my body sweat evaporate.  Then, I get cold! I've even had to get up and shower just to warm up, and go back to bed and awakened in a sweat.  There's no rhyme nor reason to it. I do put my pillows into the dryer on heat every couple of days for 20 minute turns, and I found out that down comforters may be machine washed and dried. Alas!

Baldness: The air blowing on my bald head from the air conditioning vent darn near froze me to death. For nights, I'd put the sheet over my head, until one day I asked my son if he'd move my bed.  Not a bad idea. Then, he became upset because the only place he could move it easily was by the cable outlet for the TV, and apparently it's reputed to cause cancer!  Oh well, right now, I wanted to sleep.

Cotton, cotton, cotton is my only answer. Sleeping in a cotton night gown, or tank top helps...nude sleeping seems to be more sweating for me. I think I just need something to absorb the sweat.

Neuropathy: That, for me, is a numbness in my fingers and the soles of my feet. A friend noticed this before I did, and finally brought it to my attention that I was dropping (or fumbling) a lot of things. This has gone on for at least six months since chemo began. Note:  Neuropathy (the numbness on my palms and soles of my feet) visit me to this day, as of this editing. I cope with it unless I am going to get an injection for some reason—and then take a Neurontin Rx but it makes me swell up—so I just take it when I can't stand the numbness, or during a needle stick, I feel the pain all over my body, so I take Neurontin before I head for the doc, which of course, is relatively rare now—only for blood tests, or immunizations. note: as of this edit, I do not use it at all, just tough it out.

(2005: I still have peripheral neuropathy, and losing my eyesight, now, its difficult for me to learn Braille without a large Braille Writer. Injections are excruciatingly painful. No, I don't have Diabetes, in fact, I have low blood glucose and am prone to hypoglycemia because I have post-polio syndrome--great, eh! I did find that the American Diabetes Association does have an excellent discussion about PN in their book on diabetes complications, which helped me understand what was going on with me, irrelative of diabetes.)

Joint Pain:  I've had that too, ever since Chemo. At times I feel it mostly in my fingers, at other times in other joints.  I'm told patients do complain of that, and more recently I've been informed that chemo may cause swelling of the connective tissue in the body and eventually advancing arthritis (it does!).  Well, keep swimming, sisters, but easy on the joints. Boy!  I'll say.

Metallic Taste:  About 50% of the time, I have a metallic taste that seems to come from my soft palate, and around the side edges of my tongue. I've been to the dentist to check this out, and I have no dental problems.  I also notice, for the first time in my life, I get very dry-mouthed, and thirsty. So it helps to carry mints, small hard candies, and have liquids near by  (eight months later, I still have this).

Your Favorite Foods: After chemo, they often are no longer your favorites. I adored fish, and someone warned me not to  partake of my favorites on my 'good days,' too late!  Now, i have to make myself eat fish 3-4 times a week. I adored stir-fry with tons of veggies, and Chinese cabbages, water chestnuts, garlic cloves, chicken, or fish....uh, no longer can I make it, but I can eat it away from home.

AFTER THE NAUSEA PHASE, GENERALLY FOLLOWS . . .

Immune Suppressed Phase (your doctor will tell you when this will be for you:

My doctor phoned and told me what I could expect during the treatment cycle. But, the first time I never reached the "hungry" phase. And, the second time, I may have reached it. What I did notice was that I got a preoccupation at my 50% mark with getting fresh vegetables and fruits and fish into the house as I edged toward my next chemo, and usually that only gave me 4 descent days out of 21! Most patients don't have this extensive period of reaction. 

It depends on the dose and the chemo drugs, and the patient's systemic response. My immune system has held up (at the 75% point at least) but I've been a plagued with  problems affecting any of my insides one can imagine. This time, my skin began to break down but I did lose my hair the 2nd week!

At the 50% point, in this phase, I ordered 4 lb. of mustard greens from Pea Pod (Internet grocer) and had others brought in and cooked them all into a pot of great tasting stuff. I made a crock pot of black beans (which I normally live on), and had six stalks of broccoli, and 2 bunches of celery, which I dipped in cold, soap suds with bleach, just in case, and had to send all this food home with a friend and her husband (he and I eat alike) just before my 75% mark Chemo. I knew I'd be retching if I saw that stuff waiting for me in the refrigerator. In fact, I had 2 loaves of 5 gm fiber breads, too. None eaten.

Until this time in my particular treatment cycle, it was not easy to smell food cooking in my home! In fact, I'd prefer to be dragged out to eat, and I generally don't like to rely on restaurant foods, at all!

I usually love fish, and up until my 50% mark in treatment, during this time out came the salmon, and I'd make salmon pasta salad, and broil it, and, and, and—then couldn't look at it again. My taste went more to wanting sweets and fats! I was horror struck. I do not eat pizza, ever. Well . . . I can't even type it!

My only consolation was that this was during just 4-5 days maximum out of 21 and I had lost weight, and cooked tomato sauce is high in a cancer fighting compound if olive oil is added, and I ate vegetarian pizzas with extra sauce, and sprayed on olive oil (less amount that way). I began to feel pregnant! One day, I even craved fried catfish, and. . . This is so confusing.

During my first treatment, after being so miserable, and so sick, and a dear friend came to stay with me from Michigan, she found me at the foot of her bed at 7:30 a.m. I said, I'm hungry, let's go eat breakfast, I want bacon and eggs. She said, "Oooohhh-K!" but nearly passed out because I have been preaching to her for several years to cut out all meats and definitely smoked meats. We had our breakfast, and my craving for that never ended during my latter days of the cycle when I could eat. I don't know what will happen to me when I'm through with this, but I shall not eat these things.

To this point, reviewed by web site owner: April 29, 2006

CAREGIVERS:

Helpers: The American College of Surgeons book I have on the Reading page is good for Caregivers, and I found one of mine really poured through it. Attached is an example of a list someone made to put on my refrigerator, for people who weren't used to my home.  It helped (Home Helpers).

Be sensitive to the fact that it is very stressful for someone to care for another. Try to arrange help ahead of time, or appoint someone to "handle" this for you and give them your insurance company's number, oncologist's practice numbers for their nurse or social worker. Caregivers must get time to themselves. If they are family, coming for a distance, who have children, jobs, etc. be patient, they will have to work out those responsibilities, too. The American Cancer Society might be a resource, too, but don't expect much from the ACS. Definitely your oncologist's office will help, but always tell them whom they may speak with about your condition.

Make sure any caregivers know your drug regimen, and stick to it, no matter what you say. This is often difficult for someone who is trying to help you - to make you angry - but assure them, you will get over being fed up with them, one day (not soon though). The last thing you need is someone fluttering about you, and making light of your situation, prescriptions, limitations, but you also do need someone who is lovingly calm, and knows you, very, very well. It may just be YOU.

If your chemotherapy effects are severe, your oncologist may order home health nurses to help keep you hydrated (on IV fluids) and rest your stomach.  I wish I'd have had this from the first treatment!  In fact, at 75% through, I don't know what I would have done without them now, other than to be hauled into an emergency room at least twice this treatment.  Your insurance company may help with this expense - have your oncologist's office check for you.  I have a Cigna PPO, and a case manager, who's been very, very helpful.

Instruct caretakers: Suggesting foods, or drinks specifically may throw you into a fit of awful nausea or worse. It helps to just offer help. . . "Is there anything I can do for you?" is enough. It must be so hard on people trying to help you, when they pop in and say, "How about some coffee?" or "Want some ice cream?" and you heave.

I remember one kind helper who would not just bring me a food product I needed. It had to be the store made finished product, and it tasted awful to me (I'm a 'from scratch' person). I just gave up and decided to not need 'help' in the future. You really don't need to have these situations around you now. I even found praying for help during these times a big help, too. . . "Help me to deal with this person. . . "

My home medial team was a disgrace.  Had I not been so ill, I would have fired them. The nurses did not even observe 'clean' technique, much less sterile.

See Helpers List

EMOTIONS and CHEMO

Establishing Boundaries:

During the crisis phase: diagnosis, surgery, etc. everyone is around you, helping. I was so grateful, I think I was unprepared for the phases I've found myself in. As treatment went on, I found I became very selective about the people I was with, or wanted around me. For one thing, you do begin to think about, "What if this doesn't work. . . " and that throws you into a very private, contemplative situation.
 

Another aspect of this disease I noticed was that I have just begun to be at ease around other cancer patients. That is a fault I've found with oncology practices. Initial appointments would be best held in a doctors type examination and office setting, and new cancer patients not be put into a large waiting room to hear all the various and sundry horror the other patients. I remember trying to put myself into a support group right after my second surgery, and before I knew I'd have chemotherapy. Sitting outside waiting for the facilitators, I overheard two women chatting, one loudly and obviously experienced with her disease, and all of the complications. I just didn't feel capable of "going there," and certainly not yet. I had my coping skills plan, had gone over it with my oncologist in depth, and I simply had to stay with that no matter what.

It's hard to move into a new psycho-social group— perhaps a new social-economic group, too. Such an occurrence may throw you into depression without cancer. Take your time, ease into the changes. This is a new life—and it will always be part of your life.

As chemo, and radiation progresses your energy level sinks lower and lower. You will have no energy to maintain any social facades (pretenses), and you may find yourself either having to avoid interactions, or having to tell the truth.  For the first time in my life I was just plain honest with a caller. You'll find the voyeuristic callers who 'touch base' just rarely but then want all the scoop (and then go tell others) and they will even try to pry it out of your family members if they can. If you don't want to talk, don't answer the phone, or ask such people," Why do you ask?" That usually slowed them down, and they didn't bother again. But, I did have to come out and tell one that I really didn't think she was interested. She wasn't.

Others, care, and they may be busy too, but your radar blip tells you (inner voice) and that's different. In fact, they are the ones who would prefer you tell them if you can't talk or are exhausted, honestly.

DROP-INS

For the most part, people around me, especially now, need to be non controversial, non intrusive, respecting my privacy, and time, and not talk about chemo, cancer or cures, or what my doctor was going to do for my miseries. Cockiness, and joking about me, my baldness, or my cancer is something I can't deal with. "Dropping in" is a definite "no no" because for two to two and one half weeks out of three, I don't know how I will feel at any given moment. I did try to 'arrange' for people to visit with me during my "good days," but for the most part, that worked only with those select few I'd already identified as really caring about me.

I've become selective about my visitors and to whom I speak. At first I thought I was sliding into a horrible depression, because I'm a public person, and that's part of my job! Seeking counsel from cancer survivors, and a dear psychologist friend, I came to realize that I was learning a new lesson in life, and needed to not judge myself right now, especially during chemotherapy (she knows me well! We've lived together).

I found that it helped me to have as much control over my life as I could. We lose so much of our control with cancer, and it's treatment effects on our daily life. Therefore, it became obvious to me that I needed to have a good grasp of when people were coming over, even if it was just to give me a ride to the hospital, or the doctor's office. Some well-meaning people just don't understand that walking into your home, without knocking, or when unexpected is frightening. This happened to me one time only, when I had just been very ill, and was in tears, and needed to resolve my situation through relaxation, prayer, and alone. It never happened again.

 Experiences- Continued....HELPERS

Coping with cancer diagnosis

Musings from my journal: What Helped? What Didn't?