Pixelden

So as sporadic as my blog posting is, I feel the need to document.

First what has happened since last posting, as lazy excerpt from an email to family, which was excerpted from a post to my friends.  So basically, rehashed words for documentation, but I've added a bit since the email was two weeks ago.

 In February, after a series of choking incidents, an endoscopy and some more CTs, my oncologist tentatively diagnosed me with Fibrosing Mediastinitus, a very rare fibrosing tissue disease that has no cure, and no real protocol of treatment. I went on Tamoxifen, as it had some results in case studies of reducing/ shrinking the fibrosing tissue. 

By June, I could no longer eat solid food or even swallow pills. I was coughing a lot, no energy, losing weight (10 lbs), and having nights sweats.. 

 In early July the "wait" became "see." I showed Dr. Flam, my oncologist, a marble sized lump in my armpit. The following day I had a surgical biopsy; the surgeon took out a ping-pong size lymph node and three others. That Friday, July 10, Dr. Flam confirmed that the biopsy was positive for Hodgkins Lymphoma. I had a PET/ CT on the following Tuesday, 7/14, and started chemo the next day 7/15. 

My diagnosis: Hodgkin's Lymphoma Nodular Schlerosing IIIb: Stage three, because I have it above and below the diaphram and "B" because I have symptoms, night sweats, coughing, weight loss, itchy rashes… Dr. Flam says it doesn't matter the stage, as the chemo protocol would be the same. He has modified my treatment because of the scaring and fibrosing tissue in my chest.  I am to have 6 cycles– 2 rounds per cycle (a cycle being a month) of Adriamicin Dacarbazin, Vinblastin, (just remember ADV) and prednizone for 5 days on round 1 and 3. 

Usually the standard treatment is ABVD. The B, bleomiacin, though, can cause long term damage to the lungs and chest, and with the involvement in my chest,  Dr. Flam didn't want to initially risk that with me.  After I finish my 2nd cycle, I will have another PET/CT, and if nothing lights up– meaning no cancer uptake, then I will proceed with just the AVD, and no Bleomiacin and no more prednisone.  If however, something does light up, then Dr. Flam will probably add the Bleomiacin and/ or continue with another round of Prednisone.  With the success of the chemo so far, we are feeling pretty confident that I will have a good PET– which means the rest of my chemo will be easier.

Dr. Flam has been working with me since the beginning of this journey, a year ago, and I really appreciate his intellect and scientific curiosity.  He is straight talking, analytical but open to my concerns and ideas.  He is well connected with Stanford research, so his practice reflects individualized treatments that follow the most current thinking and protocols in cancer treatment– Examples: I am not going to have radiation and I have this FABULOUS anti-nausea medicine that was approved by the FDA just a year ago.  The only drawback is that he is in Fresno and we're are in Santa Cruz.  We are working together, Dr. Flam and my primary care in Santa Cruz, and all to make it happen as smoothly as possible.

If everything goes well I should be done with chemo a week before Christmas.

Through this process there have been many "whys."   A big one, why so long to find it? Well lymphomas are statistically easier to treat than to diagnose.  Finding it can take from 6 months to three years.  I am thankful that I have been "watched" since the beginning, and that it was year instead of three.  Dwelling in the past does not help me cope with the present or manifest the future.

So now I am on the Clean Out Cancer with Chemo Challenge.  Always interesting, strangely curious, but not much fun.