Side Effects

No, I do not smoke. Nor have I ever touched a cigarette, yet my fingers look like I have had a long established nicotine addiction. This is one of the side effects that Abraxane has had for me. In addition to the discoloration, my fingers are tender. It feels like I severely bruised them and I have trouble picking things up.

Peripheral neuropathy is one of the side effects which is acknowledged on the manufacturers list, although usually it just says "numbness" and "pins and needles." Each series of treatments, I discover new side effects. Some of them go away after that series of three drips is done. Others stay with me. Baldness, obviously, stays with me and is almost universal (although there are a few people who haven't lost their hair completely). I expect that at some point, my hair will start growing again, even though I'm still getting treatment. At least, that's what it did the last time.

Other side effects I have had are pimply bumps on my scalp (one time); rosacea like rash on my cheeks (one time); heart burn (pretty much all the time although Prilosec works on it); bloody nose (all the time, but minor as these are just capillaries in my nose for me, other people have much more strident nose bleeds); muscle pain (like I have pulled muscles, started on one side, and this month has moved towards my back); joint stiffness and soreness (this time is the first, so I don't know if it will stay or not); dehydration (pretty much every time); dry skin (ditto); in ability to taste (returns the week I'm off, then goes away again); the munchies (from the steroids, largely just in the first couple of days after treatment); and fatigue.

The most difficult to deal with is fatigue. It sort of scares me about what I can get done and what I want to get done. Yes, I know, I have to understand and take it easier in some areas, but I do have a list of things which needs to be done before May. Seriously. I have made some decisions and have put things on the back burner and I know I will have to put more there as time goes on. It doesn't stop frustrating me though.

I'm also hoping that the pain I have in my pelvis, in the acetabulum (socket) goes away as I'm not happy at the thought that I won't be able to walk much anymore. Walking and hiking were my major sources of exercise. I envisioned myself going back to hiking with my husband once my daughter goes to college.

Of course, one of the other side effects, common to all chemos is "chemo brain." You just get fuzzy in your thinking. Sometimes I mis-speak someone's name even though I KNOW who it is I'm talking to or about. Sometimes I just forget to do something. It's not as bad as the fog I was in when I was on CAF, but still, it is annoying enough.

I do want to post at least once a week. However, sometimes I am waiting to get a good photo. Maybe I should skip the photos and just type. :)

Anyway, stay warm.

From the Mouths of Doctors

I was astounded last month when I went to an American Cancer Society's "Look Good, Feel Better" program. One of the women there said that she didn't wear underwire bras because her doctor said that it messed up the lymphatic system and may have a part in getting breast cancer. I was astonished at this, but thought perhaps something had changed since 12 years ago when I first heard this old wives tale and after all...it was her doctor who was saying it.

Then, last week, when I was looking at carpet, the sales woman spoke to me about her boyfriend who was diagnosed with a rare form of kidney cancer and his doctor said that the "city water caused it." Well, that I knew was complete hogwash because there is absolutely no documentation or evidence of in inordinate amount of kidney cancer in this area, which you would find if there were something to be said for that accusation.

The underwire bra comment seemed to me to be hogwash because first of all, the underwires are not that tight as to constrict the flow of anything. In addition, the lymph glands are not on the underside of the breast, but on the upper part of the chest and under the arm. So, I looked on line to see if there had been any further studies...no, just the old chestnut from the anthropologists who wrote a paper citing anecdotal information (that is to so, no scientific study but a "he said she said" situation which was shot down pretty strongly by the medical community. Nothing new.

The next step was to talk to my oncologist who practiced at the Cleveland Clinic and keeps up on the very latest of information. He said no, that that was incorrect. He hadn't heard of anything about that and it didn't make sense for the same reason I thought.

So, if someone makes some flat statement like that, check to see if there has been a study which has been published and review, preferably in a medical review such as Lancet (a British Publication) or the New England Journal of Medicine. Other countries have other high end , heavily reviewed and researched periodicals. If there is a study cited some where, look to see how many people participated (it has to be a big study in order to see if the sample proves anything or not) and for how long. Were there follow up studies by other doctors which proved the same results? If not, then this may not be real medicine, but folklore.

It's hard. You don't want to say "Your doctor is an idiot and should probably be practicing in a barnyard".....Sometimes you can ask questions to get people thinking. And sometimes you can't.

Signs and Portents

I admit, I do believe in miracles. Because of some things which have repeatedly happened to me which are out there....and well documented, I also believe in the super-natural....above the natural world.

I don't know what works. I do know that there are charlatans out there as well as people who do have gifts which cannot easily be explained.

What annoys the living daylights out of me is when people use these aspects for financial gain...particularly if they have no real psychic powers. More than that, I don't like it when people who are at their most vulnerable are exploited, given false hope or in even worse scenarios, given concoctions which will actually hurt them.

I think there's a lot out there which isn't easily explained. Some people are healed and some not...and we don't know why.

I did have an interesting thing happen the other day. I went to a healing circle and there was a "sensitive" who knew my story. She told me that I wasn't going to die from this and that I had to learn to allow people to help me and do things for me. That the gift was actually for the giver.

I thought that was a little interesting because I learned that lesson the last time. I know I had a look of absolute puzzlement. I think I still do. I believe that this person projected what she thought I was experiencing which wasn't the case.

Heck, if anyone wants to come over and help paint my family room and my bedroom, I'd be more than happy to take them up on it. Mop the floor, help me sort out stuff and generally get everything in tip top shape for big family doings in May..... No one, so far, has offered.

Sometimes I see people in treatment who see things and take it as a sign that one thing or another is going to happen and sometimes it scares me. For instance, seeing these two vultures and thinking that they were portents of their impending death when it may or may not be so.

I can tell you though, that my shoulder and side hurting and my fatigue means that I need to remember to get everything done in the morning when I'm still fresh...because every night at about 9:00, I crash....at least after the Decadron has worn off!

So please, if you are walking this path, please hold the positive things and throw out the negative....only take the signs which are useful to you...and always keep hope at your side.

Take the Fruits of your Labors Today

I meet the most wonderful people at the cancer treatment center. I am beginning to feel like it is very much like "Tuesdays with Morrie." Last week, I met Doug.

Doug has a sarcoma which has wrapped itself around his spinal column at the cervical vertebrae, has gone into his lungs and has also spread to his shoulder. He is 62, started working when he was 9 years old on his father's farm...just big enough to touch the pedals on the tractor.

I was amazed as I was trying to sketch out a design for a quilt with trout and as it happens, Doug is a fly fisherman. He is, like me, originally from Michigan. He started telling me stories about the Ludington Light and other areas and I was a welcome audience because I knew the places of which he spoke.

Doug has to wear a cervical collar as any jarring might cause damage to the vertebrae effected by the cancer. Doug said that one of the hardest things for him is the fact that he has to ask people for help, and sometimes what is offered isn't what he really needs. He's learning though, to accept it. For all his life, he's the one who has been offering help. Now, he needs someone to help put a tarp on his fishing boat.

Doug kept on saying that the first thing he's going to do when he kicks cancer, is to rent a motor home and drive his mother to visit his sister in Olympia, Washington (amazing as that's where my sister is too). Once there, he's going to fish some of the rivers....he's already working on it.

And he should. Even though things look really dire, the chemo is working and some of the spots are leaving. I'm pleased for him. He has a real positive attitude and is planning for the future.

What is sad, though, is that most of us have to be smacked up along side the head with cancer before we realize that no one notices if we take vacation or not...the world doesn't roll to a stop if we take time for ourselves...and we really need to tie a fly on and lay it out over the water...and catch our own whopper of a trout. Who knows? Anything can happen. Carpe diem...

Protect Yourself

Sometimes we need to hit our friends and relatives over the head. When I was in treatment last week, I was talking to a woman who started chemo the same day I did. She has a very rare form of bowel cancer which they don't usually see until people are in their 70s. She is 34 with two young boys.

I asked about her Christmas and she rolled her eyes. She had gone to a family get-together and was sitting next to her husband who was sitting next to his brother-in-law. All of a sudden the brother-in-law started coughing. He said "Oh, I just got over the flu. I got it on Monday, but it's gone now (hack hack hack). " She cringed and stayed away from him..her husband did not and 4 days later, he too came down with fever....he had caught the flu from the other.

This meant that the woman had to do spend several days at her uncle's house where everyone was healthy because her blood counts were so low she didn't dare stay in the house with her sick husband. While there, her cousin said "Let's go to Walmart." She answered that her blood counts were really low and she dared not. "But it's just Walmart, " said the cousin.

Sigh. The fact that we are so susceptable to anything which comes down the pike seems to slip by people....no matter how often you remind them. One thing I recommend is asking your doctor exactly when your counts are the lowest (the nadir of the chemo) so that you can avoid people especially during those times....hopefully it sinks in. I also avoid large groups of people and try to remember to wipe the handles of the grocery cards and baskets I carry, or I leave my gloves on. This is especially important as we head into the greatest period for getting colds and flu, traditionally starting now and peaking in February and March.

However, don't get your hopes up. Last week, my husband's cousin invited me to go with her and her sister to Toulouse. From there, her plan was to go to Barcelona and Lourdes....after all, going to Lourdes would be good for me as I'm sick. Only one problem...I get treatment every week for three weeks, and three days after getting treatment I crash from fatigue...the steroids mess up my sleeping so much that when I come off them, I hit with a bang...the fact that the blood counts are lowest then doesn't help either. The concept of having to be on an airplane...not to mention catching flights and connections, given my present state of being really leaves me cold. I'd love to go to Toulouse, Lourdes AND Barcelona....but it's just not going to be now.

Keeping things in Perspective

I love this sky...but the powerlines and the transmission pole get in the way. Wait a minute, that's a defeatist way of looking at things! Is the sky any less beautiful for the obstructions? Not really. The clouds with the light are so spectacular that you don't really pay attention to them or the roof of my neighbor's garage.

Chemo is that way I think. This last week I was really tired. It seems like I can't recover until Thursday mornings. Which is a pain in the derriere. Friday, I spend most of the day in treatment or driving to or from....I admit, I make two stops at least so I COULD get home earlier but still, I come home and do a little housework, then I have to make dinner, blah blah blah. Saturdays, I'm usually spinning around like a top from the Decadron (a steriod I am given by IV to reduce nausea). That continues through Sunday....until Sunday night at 8:00 or 9:00 I crash. Mondays, I'm exhausted. Tuesdays, ditto. Think so tired that your eyes are watering. I wonder if this is because I am the least fit I have ever been in my life....coupled with the fact that I am no longer young, but middle aged. I never was like this before.

This Wednesday, I spent getting a bone scan (it takes 3 hours to get the radioactive material circulating through your blood stream, then about 2 hours for the scan and reading it to make sure there are no problems....etc.). I don't if that added to my fatigue, but I wasn't even able to watch my favorite show. I have other side effects as well. Side effects can differ...this last week I had a breakout on my scalp....imagine the worse case of acne on a teenager.....but on my head and back of my neck. Add that to the bloody noses, dry and sensitive skin, thirst, inability to taste things (I can taste salty, spicy, sour) and baldness.

Every week, it is the same. Except, on the 4th Friday, I have a blood draw to test the tumor markers, and see the doctor. Repeat. Until the end of April if it continues to work. Longer if not. ARGH. It was easier on Taxol for me because I got a 24 hour infusion once every three weeks for 9 months. At least I was able to bounce back. I was beginning to feel a little sorry for myself.

Today was treatment.

She walked in about a half an hour after I started my drips. Short, but full of style. Red coat with black trim, black pants and a wonderful "bucket style" hat in a suede look fabric with a flat bow in front. She exuded beauty. She took off her hat to reveal a skullcap like I wear at home. No eyebrows, but an absolutely beautiful face....round and cherub like. I heard her say something about her bleeding nose.

I told her what I was doing for mine and we started talking about Taxol (what she's on) and chemo and things. She's on Taxol, the drug I had before, but the protocol has changed and it has been hard on her system. She had the bone pain, but she's also had to have multiple transfusions and one time she had an allergic reaction to something and she began to feel like she was floating. She's been having chemo treatments for over a year and she, like me, comes in every week and has a treatment unless her markers are too low.

That, my dears, put things in perspective. It is easy to find things that are wrong and to have a pity party. That's OK. We deserve to do that every once in a while....but I think the trick is to realize that we must keep it to a minimum.....and that it could be so much worse. I think most of us, no matter how horrible it may seem can usually think up another worse scenario....it's just that sometimes we need to have a stylish package sweep into our lives and show us the way. You Go KIM!

What to Do?

Last week, I had an interesting experience and I'm still trying to figure it out. A couple of weeks ago, I was speaking with a woman at the cancer center. She had been exploring alternative medicines as well as taking anti-cancer drugs (I later found out she was on Aromasin and Faslodex and had gone over to Zometa and wasn't taking Faslodex). She had had breast cancer and had a nodule on her collar bone. Just as the chemo nurse came out, she had me scribble my name and telephone number on a piece of paper. "I'll take you to him when I go next" she said. Hmmm.

Last week, she did just that. "Him" was an Amish herbalist. I went in and he asked me what was wrong. I think I simply answered that I had breast cancer. He looked me in the ey, placed two fingers on my left side and said. "Yes, you do." I can't remember if I had said a recurrence of breast cancer, but he said, "You had this before and didn't get rid of it." Ok..He had me hold my arm out and didn't really tell me what he was doing....I gathered after the first push that I was to resist. He tore off a sheet with a diet and a list of herbal remedies he wanted me to use.

The diet is what has been around on the internet erroneously known as "The Johns Hopkins Cancer Diet"....which doesn't have anything to do with John's Hopkins. It is a plant based diet. You are only to eat fresh fruits and vegetables, whole grains, nuts (especially almonds), legumes (but not peanuts), real butter and no-salt added cottage cheese. All animal proteins, eggs, cheese, sugar, salt, white flour, peanuts and any other dairy other than the cottage cheese and butter is to be omitted. I have no problem with the diet, other than the fact that being Vegan with no eggs or cheese does take some work to make sure that you get the appropriate amounts of protein, especially for a person on chemotherapy. The diet is a good one and is very healthy for you in general...but I also didn't want to become a short order cook and I will have to cook darling daughter and dear husband animal proteins.

You are also supposed to make a quart of 50% celery and 50% carrot juice and drink it each day. It must be fresh. In theory, the celery is a detoxifier and the carrot has great anti-oxidant effects. I don't like celery. I went out and bought a juicer and made my first batch, throwing in an apple in an effort to counteract the celery. Did I say I don't like celery? I was successful last night with drinking a bit more than half. The concoction is over 6 large carrots and a bunch of celery. That's a lot of carrots and celery for someone to eat in one day's time.

While the healer doesn't charge for his appointments, you can buy the herbal remedies from him. I must say that after some research after I got him, his prices are good....but I still left a substantial amount of money....more than I should have.

The herbal remedies were Red Clover, whole apricots, Food Enzymes, Parsley tablets, and Pau d'Arco. I know that if I told my oncologist, he would probably have a bird. I researched each of the items. I immediately discovered that Red Clover, largely cited as a "cancer killer, but is something that I must stay away from. Red Clover contains isoflavones which produces estrogen-like substances in the body. More research is needed into isoflavones and phyto-estrogens, but the initial responses are mixed. I remember Dr. Bobrow saying "estrogen is estrogen and you need to stay away from it."

So....I am not going to take the Red Clover. The others seem to be more benign, but part of the problem with "herbal remedies" is that people tend to take them along with chemo and other drugs (like I am) and don't think about the interactions. In some cases, we don't even know all the interactions. After all, Digitalis (Foxglove) is an herbal remedy albeit a very powerful one . Much more research needs to be done on this topic, while in other areas it has been shown that some of the remedies just don't work.

Part of me says I shouldn't even look into this at all...at least not right now. I will say that I can't bear the thought today of drinking any more of the carrot/celery mixture. In fact, my stomach is quite upset today.

The lady I went with had had advanced breast cancer and following this procedure and other drugs, her large tumor has subsided. Part of me says that this may work.....the other part of me says that I know that the Abraxane is working (the tumor markers fell substantially), and that perhaps any more exploration of this should wait until after I'm done with the Chemo in April. It is a puzzlement.

I do believe in the mind-body connection. Some of the other things which have been put forward are completely unfounded upon further investigation. Do I believe that this healer is trying to hoodwink people? No. He believes in what he does and some people probably have been healed. Others haven't.

I don't know how or why I happened to fall into this position, but it really is making me think. The world cancer patients live in is often scary and it isn't just because of the disease and the treatment one gets through western medicines.