Friday, July 31, 2009

FOUR DOWN - NONE TO GO!


I had my last chemo treatment yesterday and would be doing cart wheels if I wasn’t so tired. They couldn't get the right vein to get the IV in but finally found one that sort of worked. Then they had to move to another one for the Adriomycin because it's so toxic. We were there almost five hours. I was able to doze in and out part of the time. Our friend Tami took me to the treatment because Chuck was too sick to drive. He is still recovering from a bout with food poisoning over the weekend. Tami got me back home and I crashed on the couch for a while and then went to bed. This is my last chemo thank goodness and now all I have to do is rest and get my energy back for a while. I go in August 18th to get "mapped" for my radiation. My body just wants to sleep and I guess that is a good thing. I will try to rest and relax and make the most of the time I have before beginning the next phase of treatment which will involve driving to town and back every week day for six and a half weeks. SIGH…

Friday, July 17, 2009

Limited Benefits of Cancer Screening

There was an article in the New York Times today with this headline: In Push for Cancer Screening, Limited Benefits. Why they didn’t say, “Limited Benefits in Push for Cancer Screening” is a topic for another time.

The thrust of the article is that the benefits of various screening tests including mammograms, PSA tests, colonoscopies, etc. is questionable. The cost of mammograms alone is an estimated $4 billion dollars a year. Following are excerpts of key points. For the full article, go to the New York Times website.

“According to Dr. David H. Newman, author of the book “Hippocrates’ Shadow: Secrets from the House of Medicine.” Some of those tests cause false alarms that lead to unnecessary follow-up surgery on normal breasts, at a cost of $14 billion to $70 billion over a decade, according to Dr. Newman, the director of clinical research in the department of emergency medicine at St. Luke’s Roosevelt Hospital Center in Manhattan.

Cancer awareness campaigns can be a disservice to the public by making people overestimate their risk of dying from cancer, according to Dr. Steven Woloshin, a researcher at the Dartmouth Institute for Health Policy and Clinical Practice. Thyroid cancer, for example, is a rare disease that kills an estimated 1,600 Americans a year. But the campaign called “Check Your Neck” makes it seem as if everyone should worry about the disease, Dr. Woloshin said. But there is no evidence that routine neck exams reduce the risk of dying from thyroid cancer, said Dr. Barnett S. Kramer, the associate director for disease prevention at the National Institutes of Health, which has a cancer Web site describing the potential benefits and risks of many cancer screening tests. Most thyroid cancers are so slow-growing and curable that early detection would not improve their prognosis, he said, while a rarer form of thyroid cancer is so aggressive that a surge in screening would be unlikely to have an impact on the death rate.

Dr. Ned Calonge, the chairman of the United States Preventive Services Task Force said, “There are five things that can happen as a result of screening tests, and four of them are bad.” His group consists of independent medical experts that Congress has commissioned to make recommendations, based on medical evidence, about what preventive measures actually work.

The one good result of screening, Dr. Calonge said, is identifying a life-threatening form of cancer that actually responds to timely intervention. The possible bad outcomes, he said, are results that falsely indicate cancer and cause needless anxiety and unnecessary procedures that can lead to complications; that fail to diagnose an existing cancer, which could lull a patient into ignoring real symptoms as the cancer progresses; that detect slow-growing or stable cancers that are not life-threatening and would not otherwise have required treatment; and that detect aggressive life-threatening cancers whose outcome is not changed by early detection.

Experts like Dr. Calonge say screening is useful only if, on balance, the deaths prevented by treating cancers outweigh the harm done by treatments that are not medically necessary. The problem is, most current screening tests are not sophisticated enough to determine which cancers might not require treatment — or to predict which life-threatening cancers will respond to treatment.


There are a fairly large number of comments after the article. They mainly fall into two categories. The first group takes a pragmatic approach supporting the idea of less screening to save money. The second group consists of people who were saved by early detection or lost family members due to lack of early detection. They personalize the issue and think that awareness and early detection are valuable tools in the fight against cancer.

On a personal level, I have to wonder how I would have felt if, after discovering my lump, I had been told that it would be wise to “track” it for six months before deciding on a course of action. I would have to say that I fall into the category of people who think I would rather be “doing something” than taking a “wait and see attitude”.

We could really save a lot of money if we only tested people during their “productive” years and maybe backed off testing and treatment after a certain age. Oh, say, 69 or even 79. If we are objectively talking about how to dispense limited medical care that might make sense in the abstract, but what if you or your mother are sister fall into the “don’t bother” category?

Personally, I would much prefer being given a reasonable interpretation of the odds of treatment vs. no treatment and make the choice for myself. One part of the article indicates that people might be happier in general if they didn’t know until it was too late to do anything because they would save themselves anxiety and stress. Ignorance is bliss? I don’t think so.

.

Monday, July 13, 2009

Where's My Focus?

I flip through magazines and books trying to get insights and information but end up not remembering what I’ve read. I try to watch a tv show, but the plot makes no sense to me. Books that I would usually devour and enjoy don’t capture my interest. Organizing a box of stuff or a room seems beyond my ability. Where did my focus go? Will it come back?

Our “Big” tv broke down and the bulb Chuck replaced fixed it for a day before it broke again. We scarcely finished the “Fixed It” dance before it wasn’t fixed again. Now it’s in the shop. It may or may not be fixable. I can relate to that.

The refrigerator decided ten years is long enough for it to chug along so it proceeded to defrost itself permanently. Chuck read up on the internet about the problems that seem to be pretty common in our ever so reliable Maytag. Turns out they are not so reliable after all. I can relate. He did all the suggested things and now there is one more part that might fix it. If not, we will be shopping for a new refrigerator. Didn’t refrigerators used to last much longer than ten years? Yeah, I thought so too.

Repair or replace. It’s frustrating but a fairly simple process. I wish my repairs were as easy. Where do we get the part that makes my focus work right again?

.

Saturday, July 11, 2009

Kindness Has Many Faces

I was going to title this “How to Ask For What You Need” but I thought that might imply that I have some answer to the question. Unfortunately, I don’t have the answer. I threw the question out to some friends and didn’t get much response. Perhaps I’m not the only one who has trouble asking for what I want.

Kindness has so many faces. It’s such a wonderful blessing when someone simply intuits a need and fills it. Like when my friend Tami says “I’m coming over to work in the yard for a couple of hours. Just tell me where to start.” Or my friend Dale says, “I’m bringing dinner. Is there anything you can’t eat?” It’s a wonderful thing when my friend Brence asks “Where’s your favorite lotion? You need a foot rub.” Or Vera says, “How about a little cribbage? I’ll bring dinner.” Things like that can almost bring me to tears.

My high school friend Ruth visited recently just to “BE” with me. She is very good at that. She helps me feel less tethered to be present and worried about the future. We lost ourselves in an afternoon of just being. It’s a rare gift.

My friend Kizzie gave me another version of “being”. When I got my first cancer diagnosis in 1996, she was the chaplain at the hospital where I had my surgery. She appeared in my room and said, “I hear you had some bad news. May I sit with you?” She sat by my bed and held my hand and let me cry. She didn’t offer a single platitude or quote scripture. She just sat until my husband returned and took over. The fact that I still remember her precise words, says exactly how much they meant to me that day.

Of course those are all the ones who know what to do. It’s harder when someone says, “Let me know if there’s anything you need.” I’m beginning to think I should have a check list ready and offer people an assignment but usually I’m too caught by surprise to actually suggest anything. I’ve decided that if I’m ever in the position of having a number of people offer help I should have a sign up list that includes their name, phone number and skills. This might seem crass but it’s definitely practical. Or maybe I should “just happen” to have a list available to pull out of my purse like a rabbit out of a hat.

I do think people really mean it when they offer, they just don’t know what to suggest and neither do I. There’s got to be a better way.

It gets even harder when the person I need something from is close to me. I want them to just know what I need and when I need it but that’s unrealistic. People can’t read minds and get frustrated trying.

When my husband asks what I need, I usually end up giving some vague answer that includes things like warmth, affection, patience and kindness. These are wonderful attributes, but they aren’t specific things that I would like him to do: like make me a baked sweet potato, cuddle me on the couch, rub out the kinks in my shoulders. Why are those things so much harder to ask for? I think the reason they are harder is because I am afraid my request might not be honored. Then I will feel rejected or frustrated. Sometimes, I think I’m not worthy enough to ask for such frivolous things. I’m not sure which is stronger: my fear of rejection or my sense of unworthiness. Both play a big role for me.

My friend Joyce gave me an excellent list to use as a tool when asking for something. Here are a couple of things the lists suggests:

1) Be clear about what you want
2) Listen for alternatives or compromises
3) Do not apologize for asking
4) Do not act helpless
5) Do not whine
6) Do not exaggerate or downplay the importance of your request
7) Decide in advance that a “No” answer may have nothing to do with you
8) Do not blame or lecture if you don’t get what you want
9) Remember, your request is worthy even if you cannot get that need met the first time you ask

This is an excellent starting point for asking for what you want, but it begs the question as to how I get to the point that it feels so hard to ask for anything. Why do I think that others will be angry with me if I ask for anything for myself? This is one of the quotes in the paperwork that Joyce shared with me: “At all costs, I must avoid making statements and asking questions that might make me look ignorant or stupid.” Wow, did that jump out at me. I could almost hear my step-father’s voice. His favorite word was “asinine”. My questions were almost inevitably asinine. I have no idea if he actually thought what I asked was stupid or if he didn’t know the answer or if he just didn’t want to be bothered. In any case, my questions were almost always asinine. It doesn’t take too long to learn to quit asking questions in those circumstances.

Joyce tells me that her mother often said, “Don’t bother me.” Through this experience she learned that she was a bother and to this day hates to “bother” people.

Here is another quote that jumped off the page. “I must be loved or approved by virtually every significant other person in my life.” Yikes! Here’s the real kicker. “My past history must determine my present behavior and because something once strongly affected my life, it must affect it indefinitely.” Bingo!

In my head I’m singing “Let the sun shine in.” Remember the Age of Aquarius? Yeah, I know, it’s been a long time but maybe it’s finally time for Jupiter to align with Mars again and for Edythe Ann to ask for what she wants. It could happen.

FOOTNOTE: I have decided that the very best “thing” anyone can offer is their time. Offer to be a personal assistant for an hour or ninety minutes. Specify if you have specific skills at cleaning, organizing, garden work or are just willing to show up and help where needed. That might even include serving tea and talking for an hour or so. If you bake the best pie in the valley, ask when it should be delivered. Sometimes, even if it means doing something you don’t like all that much, you could just put yourself in neural, show up and do it. It’s only for an hour after all.

.

Friday, July 10, 2009

Chemo Treatment

Those of us who have had or are having chemo therapy treatment take it for granted that everyone knows what we are talking about when we say, “Another chemo treatment down, two to go…”

Let me take a little time to describe just what a treatment involves. Yesterday our appointment was at 11:40 am. We showed up a few minutes early and waited to get my blood draw. That would tell the doctor if my blood counts were high enough for my body to tolerate a chemo treatment. We didn’t have to wait long for the doctor to come out and fetch us for our consult. Dr. Cho is so personable and easy to talk to. He says my blood counts are still within acceptable range although I am a little anemic; nothing to cause a delay in treatments.

SIDE BAR; He expressed his regret that he could not endorse medical marijuana for me but said he had no objections to it if I could find a doctor who would support it. Maybe my primary doctor, Dr Barker would be amemable. I left a message for Dr. Barker, but no return call yet.

After meeting with Dr. Cho and having a brief check up, I’m ready for chemo. The waiting room is crowded with chairs and puzzle tables. Patients come and go with various cancer evidence to identify them as fellow cancer patients or caregivers: water bottles, bags of things to distract them during treatment, shocked faces, resigned faces, bald heads, wigs and scarves. Some of us are puffy from the steroids that go with the treatment, some are gaunt with depleted systems showing on faces. The “professionals” whiz by us at twice the speed most of us can muster. The caregivers try to maintain solicitous concerned demeanors through the boring wait time. We waited quite a while before tentatively reminding the nurse that it was two o’clock and we had bee there since 11:30. After a flurry of activity to find my “lost” file, we were finally escorted into the chemo suite. This is a large room with a big work table in the middle for all the many necessities of chemo. There appeared to be two technicians/nurses on duty and they double teamed me getting me set up with an I.V.

For once, we had a semi private chemo area. The room had originally been set up with chemo stations around the room with partitions between each station. Over time, the stations had been converted to contain two and then three chairs. Previously, we had been consigned to the third (middle) chair with scarcely any room for the staff to move around, let alone have Chuck sit comfortably beside me. We felt like we had graduated to this higher status at last.

The first part of the procedure is to find a working vein. That takes a couple of tries. Finally “we’re in” (“we” are not happy with the multiple sticks, but are glad to be done with the search for a free flowing vein). I’m hooked up and ready for the initial saline drip. Chuck asks for a blanket and pillow and tries to make me comfortable.

They still haven’t found my missing file with the orders from my treatment. They are working on it. The orders finally arrive and I get my Emends which is a terrific anti-nausea drug. It’s in the collateral drip and things are finally under way. This calls for a root beer popsicle. Next comes the Cyclophosphamide (Cytoxin) and then the last thing is pushing two vials of doxorubicin (Adriamycin). The nurse can’t get “a good return” so has to find another vein to push this last dose into. After that a little more saline and we are on our way.

I remember my friend Donna called Doxorubicin the "Devil Drug". I'm not sure if that was because it is red or because it made her so sick. The only think it does to me is make my urine bright red. Disconcerting the first time it happens. Donna lost her battle with ovarian cancer some years ago now but not due to any lack of will or effort. She fought like a deamon and could walk and talk faster than me on her worst days. I still miss her.

Finally, I am full of drugs and popcicles and still feeling pretty good. It's hard to complain after a treatment is finally over. We just want to get out of there. Still, I wish the center had a more spa like atmosphere and I wish no one had to go there, but other than that, things are fine and life is good.

Three down and one to go…


.

Friday, July 3, 2009

Ondansetron to the Rescue

I’ve had a bad few days. Wednesday, my friend Carol and I went to Gervais Salon to treat ourselves to pedicures. Mine was spoiled by an onset of nausea. Fortunately, Carol was driving and took me back to her house where I could barf and rest a while. I slept for an hour and thought the queasiness was lifting but we decided to skip our lunch at BJs and have me drive straight home. I made it home in time to be sick again and fell into bed. I stayed sick for the rest of the day and all night and called the doctor’s office Thursday. I was told to continue taking the Ativan and Compazine, melting them under my tongue rather than taking then with water and see if I didn’t feel better. I asked about the option of medical marijuana but was told that the clinic does not support that alternative. Oh, well, there may be other ways. I just wasn’t up to exploring them then.

Chuck spoon fed me yogurt and got me to drink as much water as I would manage at one time.

Another night of nausea and pain and I was back on the phone. Forgetting, of course, that it’s July 3rd and so the office is closed. I was referred to a Dr. Glenn Buchanan who was on call and phoned in a prescription for Ondansetron to Safeway. Bless Safeway for keeping the pharmacy open today. I am to take this pill by letting it dissolve under my tongue. Dr B. advised that if I don’t get relief, I should go to the emergency room and get something via I.V. in addition to getting re-hydrated. I took the tablet two hours ago and so far no vomiting, nausea, significant headaches, constipation, diarrhea, stomach pain, etc. Sometimes I wonder if it’s wise to read these warning lists they send home with the prescription.

I’m hoping for the best but am glad we have a back up plan if it doesn’t work. Cancer Sucks!!

.