The Science

Just remembered...I have not answered the "science" question, that several have asked about.

It is not until the actual surgery that the pathologist can assess the tissue samples. So, on the right breast that was removed, there were non-cancerous lumps. One lymph node was removed and it was O.K. On the left, where the original cancer was "seen", the cancer in the primary lump was 90% dead, so the chemo did what it did. 9 out of 16 lymph nodes taken from my arm pit were cancerous. So chemo was not working there. The upshot is that my cancer has been up-graded to stage 3.

I am being told that I really need radiation. If less than three nodes were cancerous then radiation might or might not be helpful, with more than half infected, radiation is strongly advised.

So next month, I start driving to LaCrosse 5 days a week for six weeks. Early on, I was saying, "anything except radiation", now I am saying "some folks drive to LAX everyday for work...I can't complain."

I can't complain...I have the best support group a person could ask for...Love you all!

P.S. One of the nurses was telling me about an older woman that had a double mastectomy and the nurse was showing her the exercises she should do every day. The woman says "Oh thats no problem, I have been splitting wood already." OUCH...

Less and less, more and more

Tonight we had Chinese food and my fortune cookie offered this up. "As one grows to understand life less and less, one learns to live it more and more."

The gifts I placed "under the tree" this year were very few. The gifts I received were many. For me, it is easier to give than to receive. So I struggle with pride, I want to give, and instead am asking for help...can you open this jar, wash the dishes, scratch my back, plan supper, do the shopping? My family is quicker to respond than I am to ask. Not just my family, but also friends and co-workers.

Through these quiet nights I have been trying to paint, and to write. I am not happy with the outcome of either. My painting is chaotic, my writing disjointed. My pride is being attacked.

I understand life less and less, I hope in the new year I will learn to live life more and more, without so much pride.

Blessings on you and your loved ones and your New Year!!

Christmas Blessings

Blessings on these dark days!

I am sleeping a lot, and hiding in the bathroom a lot, and waiting until the house is still before I can think. My energy is low, my motivation even lower. There is no tree in the house, no presents to be wrapped, no special treats hiding on the cold porch.

After three doctors appointment this week, I wish to never see another doctor again. And yet I have another three appointments next week. How did I get here? Should I resist? Should I accept? Who are these guys anyway? Without exception they have all met me with compassion and their highest knowing. The nurses and blood techs and volunteers have all reached out in a way that I am not sure I would be able to do. They all make me want to jump into the "medical profession". But...do they know what is real?? How it works?? What is Important?? I don't know.

I am full of doubt. Yet I will follow the traditions that I know. Tomorrow we will cut down the sickliest evergreen in our yard, and it will become the most beautiful tree in our home. We will adorn it with memories, and deck it with hopes. I will set up a painting table where we will "paint" the holy nights, and I will read Angel Cards for any who wish to hear.

In these darkest days, it is hard to feel the blessings. And yet they are there. The blessings of friends, and of family... the blessings of strangers; whether in the clinic or the supermarket. The blessing of the One who knows our struggles and forgives our darkness.

Blessings on these Christmas days!

The Morning After

So what am I doing blogging the day after having both my breasts removed? I am feeling relief,

energy and no pain, and the need to communicate with you all!

Stephen and I arrived at the hospital at 5:30 AM yesterday, surgery was at 7:30. I was a nervous wreck, and had been for a few days, maybe even for weeks. I was so full of anticipation, that I had become very introspective...barely able to answer an e-mail...or the phone. Today those feelings are gone. I feel like I can make plans, move forward, and learn to appreciate my new body.

I was told that double mastectomy is considered to be a day surgery, but about 50% end up staying in the hospital for a night, or two. By 4 PM it was obvious that I was ready to go home,

little to no pain and up walking to the bathroom. We were home by 6. Every few hours Hannah or Stephen would come and check on me, with Hannah keeping track of the pain med. schedule. I had some of the best soup and bread I have ever eaten, thanks to a dear friend, who also brought a lovely bottle of wine. I asked Hannah if she thought it was O.K. to have some; she came back at me with long list of famous people who had overdosed with alcohol and pain meds...then she said ONE glass would be fine...best glass of wine I've ever had!

I came out of the O.R. with a cute pink tank-top type wrap on my chest that closes with velcro in the front. Pinned to the bottom of it are four plastic bulbs, like turkey baster bulbs, that are connected to the drainage system running under the skin all though my chest. Several times a day I will empty the bulbs and measure the content. When the daily drainage gets below a certain point, they will be removed. Today or tommorrow (at the latest) I will take a shower, and change the dressing, and put my pink wrap back on.

No doubt in the next weeks I will have moments of pain and discomfort and frustration. What I won't have is the fear of surgery or chemo. For me, this is a great trade-off and the morning after!

I love you all, and know that your prayers, thought and actions are the best of blessings!

Thanksgiving

So much to be thankful for! Spent the last few days with Adam and Caleah, who are expecting my first grand-baby toward the end on January. They will be great parents! I am thankful.

My last chemo treatment was four weeks ago. I didn't do the last two "recommended" treatments due to numbness in my hands and feet. Turns our that the Oncologist wasn't too concerned, and thinks the chemo I have received is enough. I am thankful.

I will have a simple mastectomy on both sides on December 13th. It is considered to be an out-patient surgery which means I will go there in the morning and come home sometime later in the day. I am astounded! They will send me home with two drainage tubes coming out of each no-longer breast, each drainage system is attached to a bulb that will collect fluid that I need to empty and measure several times a day, for the first four to seven days. Thankfully I am still a bit with it and have two nurses at home. I can't imagine being an older woman sent home to deal with this alone...

Thea will be home from Oregon on December 12th and will be a great help at work during a very busy few weeks...

So much to be thankful for!

New chemo, new response

It is totally premature, and I have to knock on wood, but I must say that this new round of chemo sees so much easier than the last.

I am cooking, I am eating, I think I maybe doing what I need to do at work! My mom says I seem to be feeling feisty! And it is true!

It is not only a change in chemo drugs, it is also giving myself a four week break from chemo (against doctor advise). I needed to do this in order to spend time with my kids, and family but in retrospect, I also needed to do this in order to feel like there is a light at the end of the tunnel, in order to feel like it might be worth fighting, in order to feel like me again.

The major side effects of this new round of chemo is numbness in toes and fingers, which I am experiencing, but which is pretty normal for me five months out of the year! (We call it winter!) The other effect is deep bone pain which I have not experienced yet....I have heard from others that this is the point where I have to say "Enough!"

Next week I meet with the surgeon. I feel strong in what I want him to do, remove all breast tissue from both sides and get a plastic surgeon to stitch me up. Clean and smooth...everything is done...letting go. THE END!!!

On another note, a comrade and friend died last week, after a fall down her stairs in her home. Sometimes life and death seem so random, so far-fetched, so unfair. Sometimes life seems perfect, beyond our understanding or control. Blessing on the life and re-birth of Alma Knoll.

Love you All!

New Chemo Day

Today I drove myself to my all day adventure at Gunderson Lutheran Breast Clinic. I had blood work, and then a physical, and them my new next round of chemo. I have only seen the chemo doctor once, before I started chemo, but I have seen her P.A. every time since. I am growing rather attached to her. She remembers every detail, down to how my lump felt the last time, she notices if I have lost weight, she sees the change in the texture of my skin, and assures me it is short term. I have not told her that I see she is with child. My guess is she is four months along. I hope she will give herself the time with her child...the time that they both will need.

This chemo drug will be given every two weeks, and again I will inject myself for eight days between treatments with a new drug that will enable me to do chemo every two weeks...making the total chemo experience two months shorter. Making surgery two months sooner...

Soon it will be decision time...reconstructive surgery on the one breast, with the 20 % possibility of new cancer growth in the same breast, or in the other breast at some point in the future. Mastectomy on one or both sides. Both sides means it is not a concern in the future. One side means I may feel loop-sided, and may develop cancer in the other side in the future. Both sides means I won't have to call upon the magical insurance fearie again...and there are no guarentees that the insurance will be there in two years.

Today I drove myself to chemo for the first time and after eight hours I drove myself home again. It felt good. I went food shopping on the way home and when I got home I made my favorite dish...chicken and vegitable casarole. I made enough that I can freeze batches for when I don't feel like cooking. Stephen is back to working 12 hour shifts, there are no kids at home. It feels good. My mom, sister and two friends assured me that if I felt like I couldn't drive I could call them. Knowing there are so many who care, and who will step in, is an increadible blessing, knowing I can do it on my own is a blessing as well. It is what us women do. We do it if we can, and if we can't we call on those who can.

Blessings on us all!

Break Time

Just home from 10 days in Oregon. Stephen and I flew into Portland, rented a car and then drove to the coast to meet up with Stephen's brothers, their boys, his cousins, and their kids. It has been nine years since the "Park and Bruce" clans have gathered. All of our kids were there as well...what an incredible treat for all! (Especially for me!)

Two days before we left, I was diagnosed with deep vain thrombosis in my calf. Not considered a side effect of chemo, but is a side effect of cancer. The radiologist said it is often the first sign of cancer. The consequence was that Stephen did all the driving, and let me rest my leg wherever...what a trouper!

After a long and wonderful weekend on the coast, Stephen and Isaac drove us down to Ashland where we spent the next few days. Stephen and I stayed in the little apartment above the Yellow Cupboard. It was great to spend time with our kids, in their day-to-day activities as well as with Francis Knapp, Anton Bezin, Glenn Willis and his partner Lisa and Isaac's partner Grace. What a fine bunch of young folks....

I absolutely dread starting up chemo in two days...can't even force myself to think about the surgery to follow. On the other hand, I am so thankful for this little break...I think and hope it will carry me through.

Love you all!

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.

Chemo Day

Today was my third of eight rounds of chemo.

First came the ultrasound, to make sure the chemo is working. The ultrasound doctor that I have seen several times over the years, the one that seems to feel guilty that he didn't see this three years ago, could not stop smiling, could not stop shaking his head, could not stop trying to measure little bits of dissipating tumors. He found four or five bits, and he measured them, none of them were over a centimeter. "This is really good, this is really good." I want to hug him, he wants to hug me, but it is not the right place, as I have goop all over my breasts which are covered by little washcloths. I will make a point to find him, and hug him, and thank him for a job well done...the next time I see him with my clothes on.

Chemo was good today, I ordered up a ham and cheese sandwich and a cup of beer cheese soup, then I took a nice little nap while the drugs slipped in. I have learned to make hay while the sun shines, or rather to eat when I can. I now know that the next two days will be OK, and that the following five or six days will be rough... and that the three or four days next will feel like "finally recovering from something awful, and that the two days before my next chemo I will feel good, I will make lots of yummy food, including brownies with lots of walnuts and I will eat, and my mouth will not hurt, and my tummy will feel good, and I will sleep well.

Maybe one of the hardest things about chemo is accepting each day as it comes...and not thinking about the days to come. Be here now.

So to anyone who has gotten this far in my writings... know that I love you, and I feel your love and I KNOW that your love is more powerful that chemo or cancer. XXOO

Still Wednesday

So I feel like writing...may not happen for a few days, so here goes. This is an excerpt from my journal...written at the last full moon...

The full moon is here. There was a time when the full moon, or the new moon, flowed in me. I felt it in my cycles; I was ovulating or flowing. I was conceiving or giving birth. I was rejoicing or weeping. I was planning or fullfilling. I was wide awake or sleeping.

The full moon is here. It has been a few years since I have noticed, a while since it has inspired dancing, or tears, conception or birth...a few years since it has kept me awake.

The full moon is here, and so is the rejoicing for daughters and friends. The full moon is here, and so is the weeping and regret. The full moon is here and so is planning and letting go.

I never expected it, but cancer has lead me back into the circle of life.

Wednesday evening

Today I feel good, could be that it is a perfect day in wisconsin, Mild breezes, mild temp., and all of life seems to be taking in the glory of a reproduction season well done. It could also be that I ate Stephens great spagetti and drank wine and both my mouth and tummy are just fine.

I am trying not to dwell on the fact that my next chemo session is coming up this Friday. I will eat, drink and be merry until then.

On Friday I will have another breast ultasound before chemo. I already know what it will show, which is that the tumor has shrunk...pretty substantially. Part of me wants to say, "Cool...thanks...I think I'm done now." The same part of me that that wants to quit antibiotic as soon as they start working.

This much I know to be true, the love and prayers and best wishes of family and friends is more powerful than cancer or chemo.

Changes

I’d felt for while that my left breast was, well different. For years I have done self-breast examines and found many, many lumps. Especially when I was younger. I didn’t feel a lump, and I still don’t. My left beast has grown heavier, warmer, and a little perkier. It feels a little like very early mastitis, or like having milk in your mommy breast that the two year-old has lost interest in.

In the course of a day I had mammograms, ultra-sound and needle biopsies of the “mass” as well as a near-by lymph node. I watched the needle biopsies on the ultra-sound as the large mass had five or six hollow core needles shot through it. The doctor explained every step, showed me how he was not seeing “smooth margins” but the pathology report would take a day, “And then we will know for sure.” I watched as the very experienced and compassionate doctor knew exactly what he was seeing. I have seen this doctor several times over the years, because of the lumpy nature of my breasts, (lumps that never could be labeled as “good” or “bad” by mammogram) every few years I went straight to ultra-sound, and every few years this same doctor explained to me what he was seeing. He never suggested a biopsy. I was there when he said to his technician, “Please pull up the ultra-sounds from three years ago, I want to study them.” And then under his breath, probably only meant for his own ears, “I should have seen this.” He is making the assumption that cancer grows at a certain rate, and that a mass that is 1” by 1.5” should have been apparent three years ago. I remind him I had a full physical six months ago; including a breast exam, and my doctor had no concern. I reminded him that this breast felt no different to me until a few months ago, and that I still couldn’t feel a lump. He says, “I know, it’s really hard to feel, but I should have seen it.”

The next afternoon, the head of the breast care center (a surgeon) called me and went through the biopsy results with me. We spent 40 minutes on the phone and then made an appointment to meet the next day. I have breast cancer.

Within a week I had met with a surgeon, a chemo doctor, a radiologist and had a P.E.T. scam, as well as a breast scam. I was given tons of info, and I was told several times that my course of treatment was up to me, that one thing they know, the more involved I am in the process, the more accepting I am of MY decisions, the better the outcome.

I know the tumor is large enough to put my cancer in the Stage 2 category, and that the lymph node involvement puts it at a stage 2 +. The tumor has invaded the surrounding breast tissue but the PET scan shows it has not moved to lung or bone or anywhere else.

I know I am in for an extended time of dealing with this the best I can. This is the year I live with breast cancer.