Shoot for the Moon #5

Good news/Bad news

The good news was that I did NOT have pancreatic cancer which more often than not has a bleak outlook. The bad news is that I did have a cancer…Non Hodgkin’s Lymphoma, Large B Cell Type.  That was good because there was treatment and a pretty good percentage of people with Non Hodgkin’s today are treated and are alive. The next part was staging the disease. Based on size, number of tumors and blood work one gets rated. Stage one is the least invasive through stage four which is when you are in really bad shape. The doctors were pretty sure I was stage four from the information they had gathered at that point. The final determining test would be a bone marrow biopsy. This is the worst test to endure. The lay you on your stomach and stick numbing needles in your lower back to one side of your pelvis. The they insert a huge needle – with a lot of pressure and force to penetrate the skin and large flat bone. I don’t really know why they bother numbing the skin – because once they star digging in the bone it kills! Inside the needle there is a very sharp blade that penetrates and then spins to shave shards of bone for collection.  It is the worst! I had many of these tests over the next 10 months.  They examined my first bone biopsy and they were amazed that the  marrow was clean. That was great and saved me from being stage 4 however they needed to work fast before it did cross over. I started chemo immediately. Huge doses to get the cancer in a stall. The Doctors planned from the start to do a bone marrow transplant with in 5-6 months. They needed to try to control the disease first so the bone marrow transplant would have a better chance of working.

bald-mommy-013The Side Effects

After having my final diagnosis and getting started with chemo the process of acceptance started.  I never had the anger part of the disease. You know – the why me? This isn’t fair! What did I do to deserve this?  Somehow I intuitively knew that was a waste of energy. At the same time I also did not do the “I am going to beat this!”, I will fight, Cancer can’t get me. I just had to roll with it. It took all my energy and attention to grasp the idea of having millions if not billions of cells in my blood stream viciously attacking my body organs. I had no energy for anger or determination to lead a battle.

We told the kids. They were of course concerned but really didn’t get the impact it would have on their lives for the next 12 months. After my first treatment I knew my hair would fall out. I did not want to look like a mangy cat so I let the boys take scissors and a razor and we had a barber shop party! They thought it was a blast to cut mommies hair and then shave it! I am one a just a few women that can say I sported a Mohawk!  The first month was not terrible – just a lot of bathroom trips with weird colored stuff coming out both ends. The chemo made my stood orange. UGH!

The other lovely side effects that are not much mentioned are huge painful mouth blisters and I lost my finger and toe nails. But for me the nauseas was all consuming. It never gave up. It was relentless in in intensity and endurance. Six months of chemo followed with worsening effects as we got closer to the December 2003 transplant date that was set.  I was hospitalized a few times in between treatments for 2-5 days per visit for complications with the chemo. Those times were a blur.

bald-mommy-019bald-mommy-hi

Circle the Wagons!

I will never forget the first time I stepped into the chemo unit. They had 3 open pod like rooms with pink leather lounge chairs with poles attached on one side.  They were all in a circle like a wagon train! What is up with that? Over time I learned that all the chemo people came with their bald heads, and frail bodies and would sit together and chat about their treatments and remedies for the endless side effects that plague every cancer patient. Well – sorry – that was not for me! Mostly I was not interested as I was getting weaker and was still fighting fevers. I did my treatments in a small bed. I would get in my small plastic lined bed and have Gary draw all the curtains and curl up and wait for the poison to drip by drip enter my blood stream. I would be subject to an array of blood tests that we would get a two page spread print out to take home. Every four weeks I would return to Hopkins for the poison 2-4 days in a row.  That continued for 6 months and the date was set for my transplant, Dec 26 2003. I had to enter the hospital two weeks prior to that I  would stay 3-4 weeks after that date in hopes of the transplant working.  The chemo ended and the transplant prep started.  I was really skinny. I will not forget when I was feeling really sad I would get up and find strength to put on a bikini – I looked so good! Flat stomach skinny legs – all was great except for the grey tint to my skin and the fact that I could not stay upright for more than 10 minutes! I would write emails to my friends and family. It was a blog of sorts – before blogging was popular! I do remember writing many times – I want you to all remember how skinny I was and how good I looked because when I get better I don’t think it is really possible for anyone to weight so little!

More to come.

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