Side Effects of the week

I have been thinking for the last couple of weeks that the pain I have been experiencing in my side, back, shoulders and spine seem to be muscular in nature and the more I thought about it, I wondered if it wasn't fibromyalgia. This was especially brought to mind because of the neural (nerve) connection with the Taxol based chemo drugs. I was speaking with a friend who had experienced a bout of it after falling from a horse.

Today, I asked the oncology nurse, now mind you, I had spoken with the oncologist and the nurse before. She said "Oh yeah, it's common with Abraxane." Well, OK, now I had a cause. Does it go away? She said that usually, it goes away gradually, much the same way it came on, but in some cases, it doesn't. Ick.

I have a hard time rolling over in bed, getting in and out of the car, and miscellaneous other tasks which cause me to bend and twist. Sometimes it's more than that though. I can be talking to someone and breathe in and that lung motion causes me to feel like I have a knife in my back.

Another side effect I wasn't aware of is temporary blurriness of vision. Thank goodness! I was getting ready to go into the eye doctor's again. I just got my glasses in October and it has been a yearly occurrence for the last 5 years. A new pair in 4 months was making me worried that perhaps I had diabetes on top of it....but I am pretty sure I don't...it was just another side effect.

Sigh. I'll just keep on keeping on. I still can handle all this...it's annoying, but hey, it's better than the alternative!

Blessings

Sometimes I wish more people could visit cancer treatment centers. I meet the most wonderful people there. I have an awful tendency to just start talking to people. Quite often, I will overhear something and I want to try to give people some hope, or perhaps an observation or experience I have had which may help their treatment go better.

Sometimes what I get in return is far more valuable.

This last Friday, I was sitting next to an old man....imagine if you will, someone with a baseball cap pulled low on his head, a weathered, prominent face and ...well...next to no teeth. His daughter was dark haired and her skin was pulled tightly over an angular face. She looked like one of the dark Scot's Irish descendants who live in the hill country of Ohio and Kentucky. She could easily have passed for a cousin of Loretta Lynn.

I started talking with the gentleman. It turns out he has had prostrate, lung, and bladder cancer over many years and now, like me, the cancer is back in his bones. He was unsure which of the cancers had metastasized. It does make a difference, because some of the cancers are easier to treat once they've gone to the bone than others. I told him that he and I were sharing the same experience.

He leaned over and asked me, "Does it hurt?" Well, yes, sometimes, but not all the time. "What do you do for it?" I take ibuprophen and try to keep my chin up. "Oh. Ibuprophen only works for about an hour on me, then it comes back to hurtin'. " Oh. I encouraged him to tell his oncologist exactly how much it hurt him. But, I felt really badly. Mine only hurts for a while...and lately I think it is the muscle and joint pain associated as a side effect of the various drugs I'm on.

We talked for a bit...as I got up to get a glass of water, he laughed and said he can't abide water. Coffee he drinks, but he never had a taste for water. I love water as long as it's really cold and I thought of my own father who when asked if he drank, he responded, "yes, all the water I can get my hands on."

He looked at me and said a blessing to me. Then, a bit later as I got up to go into the treatment room, I wished him well. He called out another blessing on me...that the "Lord will keep you and heal you..." He repeated it. I looked at him and said I wanted the same for him.

I was touched. It occurs to me that we all need to "call down blessings" on people. Ones we know, ones we don't. Ones we see everyday in struggles, in the grocery store, on the street, and just anywhere in our busy lives. We need to call down blessings especially on those who annoy us the most. I can't help but think that in this blessing, which by the way...saying out loud is not something I'm comfortable with...but I have to say felt very comforting when he said it, actually brings down just as much blessing on the one who gives as the one who receives.

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.