Fight Well Fought

This is Glimmer13, aka NutriNazi in this blog. I never could get these sign ons and passwords in sync.

Blue Parrot passed away on January 6, 2012 after some weeks of simultaneously duking it out with fungal, bacterial, and viral infections. Of course, it wouldn't be just one simple infection for this complicated man. He was the love of my life, the joy of my heart, and the pain in my neck. He was my husband of nearly 30 years.

He fought this disease with all his might -- which was considerable. He lived life with incredible gusto. There was nothing he wouldn't try -- foods, skills, crafts, or potentially dangerous medical procedures. After a 20-year recess, he started riding motorcycles in his late 40s. He took up rollerblading at 50. While the Harleys did no harm, the rollerblading did put a titanium rod in his leg.

Once it was determined he was a candidate, my husband was anxious to get the Whipple and get on with life. And that he did! He had no regrets -- not about the surgery no the recent treatments. We discussed it many times.

We both felt we were given two bonus years of life together because of the staff at The Pancreas Center at the Columbia School of Medicine. He also got excellent care from the Cancer Center close to our home.

My Parrothead was a fighter until the very end. He did avoid months of agonizing pain. In fact, my tough guy was not in much pain at all until his last couple of days. He once told me that he had no regrets about his life; that he had no bucket list as he'd done everything he set out to do. While he did start out to create fused glass, CNC-cut miniature furniture and violins, and that piece of lasting beauty, I must say that he did that before he initiated those projects. I blame that oversight on his chemo-brain. He simply forgot all the beautiful thing he had already created with his own hands. And, his drive to the very end was also a legacy of lasting beauty and inspiration. As he would say in quoting a favorite movie of mine, "That'll do, Pig." And that *will* do. When he was right, my husband was seldom wrong. ;)

Medical Decisions

I was made aware today that the cancer is resurgent, faster than the doctors imagined. No more slow indolent days of lazing about waiting for radiation to handle a few suspicious nodes. No, radiation is off the table and harsh, powerful chemo is in order. The lumps in my lungs and on my pancreas are growing fast. I am out of remission and into full scale cancer battles again.

I will continue the radiation for about 10 days, while they setup my schedule back to GTX, as strong as I can handle. That will only work for a while before the cancer stops responding. The end result is the cancer will win. Just when is the only question.

I am not worried or upset. I have been between the devil and the sea for a long time now. I am comfortable with what awaits me if the medicines fail. My only real reservation is that I hope is I would like to avoid months of agonizing pain before I pass. My doctors are pretty good about pain management so I think I am covered there. The oddity is that I want to do some things before I pass.

I want to do some glass work, maybe play with some wood projects, maybe do something of real beauty to leave behind. I have to think about all of this to make a plan.

Tonight I am as calm as tranquil pond just before dawn. I am relaxed, I have some great music on, just enjoying life. And thinking about what will come next. I have read so many things about passing, there are so many views, so much to consider. Now to find out how much of it is true.

More later.

Sunday Night Before my Radiation Treatment Starts

It has been a quiet weekend, of sorts. Mostly trying to get accustomed to the trans-dermal pain patch. It makes mush of my mind but it knocks the pain down.

Tomorrow is my first day of radiation treatment. I have some trepidation. It will be another night of sleepy confusion while I contemplate what is happening and what is going to happen. I will be in treatment until early April. "In treatment", what a lovely misnomer for chemo and radiation treatment that is going to cost me my hair, some weight, and do devastating things to my immune system. All in the hopes of destroying that which would destroy me.

I am in the fight again, just not a real fist to fist, sword swinging, gun wielding fight. One that is decided behind the scenes by forces and chemicals I barely understand. In the end, if I win, it will be just as subtle. I will simply live and recover, I will grow my hair back and build my strength again. No knight in armor will go galloping past, no tromp down a celebratory avenue by brigades of soldiers with adoring members of the public waving flags and banners. Just me, coming home to live my life again with the ones I love. No drama, no accolades, not much of anything really, just more life. Not that I could ask much more. Just another quiet life in a city of hustle and bustle and people caring for their own lives.

I will make my life in amongst all that and carry on. With my projects and my way of doing things. I just have to get through until April and see how it goes.

What My Immediate Future Looks Like

I just returned from my first meeting with the radiation oncologist. He laid out about a five or six week plan for radiation therapy that includes some chemo. As the procedure progresses I can expect some fatigue and nausea as the cancer cells die off. The chemo will be stuff I had before only in smaller doses and only one of the three GTX chemicals, Xeloda. Afterwards I will probably do a couple of rounds of GTX just to clean things up a bit.

Tomorrow I go in for a PET scan and a CT scan. Following that I will go in for a 'fitting' where they make a customized plastic film to hold me exactly in place while they shoot radiation beams at my pancreas. There will also be a test to find how well my kidneys and liver function so that if they have to make a choice they can irradiate one kidney or another to make sure all the cancer in my pancreas is treated. The radiation may diminish the efficiency of the irradiated kidney. The test is also a baseline to determine how much the radiation affected those organs.

After some serious planning and factoring by the oncologist over the next few days I will begin treatment next week. It will be five days a week for about six weeks, so no out of town travel during the week for that whole time. The prognosis is very good, we expect a full recovery, and will ensure that outcome to some extent with a couple of rounds of full chemo afterwards. (Hello bald man, again.)

I applied the pain killer patch this morning. What a marvelous difference it has made. Instead of being blinded by the pain I can focus on what I am doing. I can even sleep peacefully. A small thing to be sure but crucial if you trying to have a life instead of being bent double with pain all day long. I am hoping that now I can finally pay some attention to my projects and my life. Something I have dearly missed for several weeks.

Overall I am enthusiastic about this. It sucks to have cancer but I have a very good prognosis, I have a good medical team supporting me and Nutri-Nazi is here to keep my diet rigidly controlled and enforced. And thanks to Nutri-Nazi and her fanatical ways I will be doing the treatments 3 miles from the house rather than 30 miles away.

It is a bright and sunny fall day, I am going riding on my neglected Harley.

Back in the mess

A long series of events led up to today. Pain in my gut, CA19-9s going up again, hospitalization for serious pain in my right side, and multiple discussions about my CT scans. At first my oncologist here wanted to put me on chemo, then my surgeon in New York said I should go back on chemo. I sent all the CTs around so every medical professional involved in my case could make their own decision. Last week word came from New York, very directly; go into radiation treatment now, immediately.

Today my wife got on the phone to New York and then to my primary care physician, and set it all up for me to go back to the local cancer treatment center and work with the radiation oncologist there, appointment set for tomorrow. There is no stopping Nutri-Nazi.

So there it is folks,my cancer is back and they want to treat it with radiation. I know nothing about the treatment or the regimen so I will be finding out as I go.

More tomorrow.

How to say it.....

I got the call today that I really needed to hear, but never expected. (I have to admit this is written through tear drop eyes.) My chemo has been canceled.

Not because it would be worthless, but because it was deemed unnecessary. Yes, unnecessary. The first step towards the painful operation that would have killed me is now not needed. I am of course astounded. And then some.

My CA19-9 report came in late this afternoon, and it reported that my cancer calling card had diminished by 66%. Thud. The bottom of my threat to existence had dropped to nothing, so no chemo, no life threatening issue, all over and done.

Except for the residual part about What the Fuck is this all about? I am beat up, hornswoggled, shanghaied and beat to crap, and then it is all over and done and I walk away? I welcome it and I hurt because of it.

Well, this is a situation I never thought I would be in. Fuck me. Sort of.

Amazing Bureaucratic Surprise

I got a call today from the Social Security Administration. The young lady wanted to talk to me about the time when my pancreatic cancer symptoms started manifesting because if I claimed 2010 I would be outside the limits for having worked and then claimed disability. There is a limit of something like 7 years, you must have paid into SS within the last 7 years if you want to claim disability. She maneuvered me to claiming that the first symptoms were actually in September 2008, which is absolutely true. I was losing weight then and I had definite symptoms in September that led to me being under a doctor's care from October through December of that year, prior to my actual diagnosis in March of 2009. That minor change then made me eligible for disability payments.

The truly amazing thing is that the bureaucracy was able to turn on a dime so to speak and actually worked with me to ensure my eligibility. I am truly amazed. At the end of our conversation the young lady said that my eligibility seemed assured and that I would likely hear from the Austin office within a few weeks and that she expected my payment to be at or near the maximum allowable of what I expected when I will be 65. The result is that I should start drawing my full allowance three years early. You cannot imagine the good news this is to me. A major weight has been lifted from my shoulders, I will be able to contribute to the household income while I endure the cancer. This also means I can shift my focus entirely to living life and dealing with the cancer.

My medical situation is getting a bit more complex. I requested and was given the radiology exam results for my last several CT scans. I have forwarded them to my surgeon in New York for a second opinion on my status. This is because I sensed some confusion in the diagnosis leading up to my re-entry into chemotherapy. One of the things that seemed to be a trigger was the concern over the Superior Mesenteric Vein, which was resectioned during surgery and does not appear normally in the scans. The radiologist repeatedly takes exception to the appearance of that blood vessel in the CT results. Another issue seems to be that the lymph glands around the original site of the cancer seemed to be enlarged, which was noted on my post surgery examinations. These conditions seemed to be caused by the massive post op infection I had in that area. If these conditions are not agreed upon as being caused by the surgery then they can be construed as evidence of a recurrence of cancer. So I am trying to set a conversation up between the New York team and the local team so they both see the same situation. I have a history of taking an active roll in my care, particularly finding a surgeon who could operate on my supposed inoperable and hence fatal condition. This is but another case where I feel medical science is a little too prone to human shortcomings. Tomorrow I will go by and get CDs of the CT exams and FedEx them to NYC for evaluation. Maybe nothing will come of it and maybe something will. At the very least maybe it will lead to some sort of conference on my situation that will possibly clear up some things.

This post is being composed at 3:30 in the morning because cancer and chemo rob you of your normal sleep schedule. Most nights I sleep four hours at a time at most unless I take sleep aids. And they usually leave me groggy the next day. So I take them only when necessary. Obviously I did not take them tonight. My midnight snack is done so I am going back to bed and will try to get some sleep.