Still chemo day...even though it is after midnight

Yes, I am still up...and still writing...not sure I am still spelling through.

It suddenly occurs to me that I have not written about prognosis, although this is common knowledge between Hannah and I. Sorry my lovies!

So, statistically, if I do everything they want me to do, I have a 95 percent chance of being cancer free in five years. If I don't do the radiation part, my chances are not much different. If I delay chemo here and then, the stats do not change. If I don't do surgery, the numbers way change. Same if I do surgery but no chemo.

So being rather numbers oriented (yes, my biggest past time is sudoku), I am choosing chemo and surgery. Chemo first to reduce the tumor, and the blood flow to the tumor, so surgery is easier. I will still have a mastectomy on the one, if not both sides, as there are questionable little bits on the other side that will require monitoring and because "balance" is important to me. One of the most common follow-up surgerys women with one-sided breast cancer have is to remove the other breast, not because it is diseased but because the lack of balance and completion of the cancer process is greater than the one saved breast.

So I am very lucky, and feeling pampered and like a big baby. This will not be hard to beat, as it has not spread to any organs except my breasts.

When chemo gets rough, I think of you all and your love and your prayers, and then it is all good! Many, many have suffered much much worse...my prayers are with them.

XXOO

Chemo Day

Today Thea took me to Chemo. Her first time...I showed her around the waiting room, books...crossword puzzles...therapy dog...she spent a few minutes with the dog and then asked "Do you think it would be O.K. if I went shopping?" Of course, please...go! "But Hannah made me promise to take notes." So, tell Hannah I told you to GO...

It has become routine, get blood drawn though my port, wait around, see chemo P.A. who goes through blood results, has a feel of my breasts, listens to lungs, hears complaints, makes lots of notes.

My only real complaint this time is this nasty cold; so nasty I have strained muscles in my neck as well as stomach from coughing. So nasty I canceled last Friday’s chemo and rescheduled for today. She listens to my chest, her student listens, she wants to know exactly what color my secretions are (white, foamy and abundant.) She orders a chest x-ray. "Your blood counts are good but we can't do chemo if you have pneumonia." I have two chest x-rays. I don't have phenomena. I have a sever virus (my own assessment) that is very prevalent in my community right now. Hannah had it, Thea had it, my son Adam, living in Madison whom I have not seen for several weeks has it. My nephews and sister have it. Yes, it is one of the worst "colds" I have ever had. No, it shows no signs of being bacterial.

So, we go ahead with chemo. I am all hooked up with the first drugs, which are not chemo but rather "relax, take a deep breath, you will not vomit" drugs. They are great. It is these drugs, and not the chemo, that require a designated driver. I pull my pre-warmed blanket over my head, kick back in my relining comfy chair and take a two-hour nap. (That is after I eat a muffin, pulled pork sandwich and cup of squash soup...all brought to me on a tray.)

In the middle of my nap, a nurse comes in...not a chemo nurse, but one I have never seen before. She introduces herself and says she is delivering a message from the chemo P.A. who is ordering one of the new, multi-spectrum, anti-biotics. If my cold does not show improvement in the next two days, I need to call...bla...bla..bla...HEY, this is nap time!...AND my scribe went shopping. I nod and smile and drift away. We fill the prescription on the way home…by the time I get home; I don’t want to take it. Hannah agrees…no point in antibiotics I don’t need when it will destroy the flora I do need (thank you Dawn for the yogurt!)

I am going to Oregon in two weeks where I will spend a weekend with my kids, husband, his brothers, their wives and their kids. ALL of whom are musicians. It is the bright spot in my future. (Next to my first grand-baby due February 1!) After the reunion, Stephen and I will go spend several more days in Ashland with Aaron, Isaac, Thea and Hannah. We will be staying in the little studio above the Yellow Cupboard.

This is my last round of these chemo drugs. My next four round (every two weeks) will be with a different drug. The chemo doctor does not want me to go for 4 weeks without. I do not want to have chemo days before I go to Oregon. So who wins? I DO! Why? Because I know I will be healthier this way. I need a time of feeling good and un-hooked...It will only be four weeks...and there are some things that are more powerful than cancer or chemo...

Love you all..XXOO

Insured?

It is true, it seems like we still approach cancer with the sledge hammer approach...and it is a sledge hammer!

Insurance/ no insurance...they are both scary. I am in a trial where I receive chemo every two weeks instead of every three, because I give myself a shot for eight days between each round. The drug in the shots keeps my white cell count up, and without it I couldn't do chemo every two weeks. Oncologists are in agreement that every two weeks has a better outcome, but they have to "prove it" to the insurance companies. Many cancer patients are still on an every three week rotation because most insurance companies will not cover the shots. They are incredibly expensive, about $300 per shot. The drug company is financing the trial, in hopes that it will be proven that it is more effective. Then insurance companies will eventually have to pay for it. Many insurance companies will not allow you to enter the trial, (they say because it might effect your general health...and cost them more...and there is no "proof" that is any better than the three week regimen.)

There is a raging battle going on between drug companies and insurance companies, and their battle has left both patients and doctors on the bench, and slows down development of many therapies that maybe very viable but receive resistance from one or the other.

A friend came to visit whose father is an emergency room doctor. His dad was telling him that it is becoming very scary with doctors having to get "pre-authorization" for many drugs. A good example is a drug proven to stop nerve degeneration after one has broken their neck. Very powerful medication with life altering consequences. The drug must be given within a very short time after the neck break, but many insurance companies require prior authorization, and many hospitals require their doctors to acquire these prior auths before the drug can be administered. (Hospitals are under the threat from various insurances to no longer work with certain hospitals.) So break your neck in the middle of the night and before your insurance company can "pre-authorize" this drug, it is too late, you now have a life long disability. (Which is no problem for the insurance company because you are now on Medicare for the rest of your life.)

What to do? What to do? I would not want to be in the place to have to make decisions for anyone else, nor do I feel I can even advise anyone in this matter.

What I do know is that if you DO NOT have insurance, or if you have state or federal government insurance, your chances of receiving the best care are much better than if you have private insurance. And yes, these state and federal programs are “insurance” with a universal pool paying in. (That’s us.)

If it were up to me, I would make ALL insurance (except for inanimate objects, like cars and houses) illegal to sell or buy. No insurance on you health, or your life or your investments or you bank’s investments, or the insurance companies investments…etc., etc. Many say, “That would be the end of our economy.” But really, in the end, can the strength of our economy be our insurance?

So, my week has been lousy. Just as I was pulling out of the chemo crap, I got a nasty head cold, now in my lungs. VERY tempted to call in “sick” on Friday…”I have a cold…I can’t do chemo today…I’ll call you after I feel better.”

Love you all! Thanks for reading!

Steps to acceptance

We have all heard about the steps ones goes through when faced with personnal grief or "bad news." Denial, bargaining, anger, acceptance. (I think there are nine or so fazes, but the others slip my mind.) I always thought of myself as one who could pretty quickly move to acceptance, but I had a different experience in the face of being diagnosed with cancer.

There was definately the denial...I knew it wasn't good before I saw my primary doctor, who knew it wasn't good as soon as she felt it. I remained in denial until the head doctor at the breast clinic called me and told me the results of the needle biopsies.

Then I got pissed, and started pacing, first around the house and then around the perimeter of our one acre lot. I walked most of the day, around and around. I would pick up sticks, small branches that seem to always be falling from the old maple trees, and I would walk, and I would break these sticks into little pieces, and I would throw them into the fire pit, and I would keep walking, and breaking sticks, and thowing them into the fire pit. I walked my little circle for the good part of two days, and then I went in the house and started making phone calls, and painting cards which became invitations to a "breast friends" party.

With no health insurance, I was trying to weigh the cost of treatment versus the cost of no treatment. I called the local health department and found out I may be eligible for a special

"well women's" program that covers the expense of screening, as well as treatment for breast and ovarian cancer. I met with our county health care nurse and we went through the numbers, and we found a way for me to get into the program. The first time I cryed, after the fact of cancer, was in her office, when I realized I could get treatment without filing for bankrupcy.

During these three days, Stephen was working away from home. When he got home, I had to tell him what was going on. He had just worked 36 hours in three days and then driven home, a two plus hour drive. I am pretty sure he went to bed that night in a state of denial. I am pretty sure I am still in a state of anger...or is it acceptance, or is it thankfulness?

I will write soon about the increadible cost of cancer treatment, and the unfairness of what insurance companies allow, what they don't and what it means.

Cycles

My life is making me more aware of my life...Especially the cycles... From the cycles of the moon, to the cycles of the day, to the larger cycle of life. To the cycle of chemo.

My chemo has a fourteen day cycle, one I am just getting to know.

Last Friday Hannah and I made of day of it, and went to LAX for chemo. The infusion itself takes about 2 hrs...and is quiet pleasant. The nurse brings me a warm blanket and a tray of goodies to choose from. A volunteer offers to get me lunch, and beverages. I eat and drink and then curl up for a little nap. I am a little drowsy for an hour or so, then I feel good. Until Sunday evening or Monday morning I can eat anything, my energy level is good.

On Monday I am exhausted, and barely have the energy to eat, let alone think. I sleep a lot. Monday stretched into Tuesday, becomes Wednesday. By Wednesday evening I can think, write and eat a little something. I can't really carry on a conversation.

Thursday and Friday my energy level increases. By Friday evening I can eat, and want to eat. As long as the food is not spicy or acidic or strong, which irritates my mouth, tongue and throat. The painful mouth hangs around for a few more days...along with a general malaise and irritability.

By the Tuesday before my next chemo treatment I feel like I have really overcome something, like that feeling you get when you have been sick for days and now you feel better. It is nice to feel better, it is hard to forget what lies around the corner as chemo day approaches.

It's a cycle I can bear, and one I won't miss.