Tuesday Feb. 22, 2011

It's early AM Tuesday.  Ed is sleeping for a bit so I have another chance to update.  We're really trying to spend time together during the day and he doesn't like it when I'm on the computer while he's awake so I'll have to post at night......

Back to the chronology of this ..... After the ER doctor looked at the CT scan, he said he needed to admit Ed right away and that he saw a couple of concerns leading him to call for a surgery consult and an oncology consult the following morning.  Both doctors agreed that they needed to obtain a lymph node to biopsy and that the surgeon would look at the small intestine situation at the same time.  They also put Ed on a TPN regimine because his nutritional status is so compromised.  He remains on the TPN and will have it when he comes home as well until he can begin to eat and digest food.  TPN is a hyper-nutrition given through a picc  line that was inserted into a vein in his left bicep. 

On Thursday, Feb. 17 the surgeon did a laproscopic procedure during which he retreived the biggest of the enlarged lymph nodes and looked at the small instestine.  He found 6 areas of "telescoping" of the small intestine.  He did not see any indication that there are growths or tumors in the small intestine and he was able to smooth out the telescoping temporarily.  All the doctors agree that this telescoping problem , which creates blockages for passing food, is likely caused by the lymphoma and they hope it will correct itself when the lymphoma is destroyed by the chemotherapy.  Meanwhile, Ed is really only able to pass tiny amounts of clear liquids, and even then, only somtimes without vomiting and diarrhea. 

We received preliminary lab results on Friday February 18th from Dr. Menco -- mantle cell lymphoma.  Not the news we were hoping for, but he explained that it is treatable and he would be consulting with the mantle cell specialists at City of Hope in Duarte, California.  He explained the basics of what would likely be the recommended treatment and told us he would know more specifics after more definitive test results over the weekend and after the City of Hope consultation scheduled for Monday, Feb. 21st. 

We spent the weekend at Los Robles and Ed had some visitors and rested. 

On Monday, Feb. 21st, the oncologist (Dr. Menco) came 'round and we spent quite some time discussing the consultation with The City of Hope.  Ed's chemo program has been slightly modified from the basic discussion last week, taking into consideration his compromised health state.  The treatments he will receive are based on a program developed by the Nordic Lymphoma Group - a renowned research study out of Copenhagen, Denmark.  It combines intensive chemo-immunotherapy followed by a stem cell transplant.  The chemo schedule starts today (Tuesday, Feb. 22) and likely will follow a schedule something like this:  an alternating series of A and B chemos - A being one day of chemo followed by 2-3 weeks of rest (hopefully at home if he's doing well), then the B part which will be 48 hours of chemo as an in-patient at the hopsital, again followed by 2-3 weeks of rest, then back to the A part, then the B, then the A again and the B again until they have done each part 3 times for a total of 6 rounds of chemo. They will add Rituxan - a drug that essentially tags the cancer cells for destruction by the body and creates a kind of "memory" for the stem cells that should he fall out of remission, the stem cells "remember" the old cancer and attack it aggressively.   If all goes well, that whole program would take about 16-18 weeks.  At some point to be determined, they would likely perform a stem cell harvest at City of Hope and hold those stem cells for later stem cell transplantation, again likely at City of Hope.  Ed feels lucky and grateful to have access to such a high level of care and I think everyone is fascinated by the science of it. 

On Monday the 21st, the oncologist performed a small procedure to retreive some of Ed's bone marrow and a small bone sample from his lower back.  Ed says it wasn't as painful as he anticipated, but it was certainly not a cake walk.  The numbing with lidocaine was the worst and then lots of strange sensations as Dr. Menco retreived the samples he needed.  Glad that is over.  We'll have test results in a couple of days to see if the lymphoma has already affected the bone marrow, but either way, it won't alter the initial chemo, which starts Tuesday, Feb. 22nd.

The doctors will also be doing a chest CT scan today and they want to get a PET scan (a full-body x-ray type test) done soon too.  It's an outpatient procedure and the scheduling has been a challenge, but we'll get it done as soon as possible. 

Ed is in good spirits.  He worries more about everyone else being okay.  He's mostly bored, but very cooperative with the nurses and doctors and asking lots of questions.  His quirky sense of humor is quite intact and he had me post his "treatment plan" on the white board in his room as follows:  #1: order "pajama-jeans" from those TV ads he's seen recently, #2: crack open a Coors Light - it certainly seems to qualify as part of a clear liquid diet, and #3: have stripper poles installed at the foot of his bed.  He has his "target discharge date" listed as YESTERDAY.   He's wearing his Sponge-Bob Square-Pants pajama bottoms (undoubtedly only until the pajama jeans arrive) and the nurses find him quite entertaining.  He likes his doctors very much and feels very confident that he is in excellent hands. 

Thank you everyone for the wonderful messages, phone calls, cards, flowers and offers of help.  As we speak, the master bath at home is being completely remodeled for his comfort when he comes home (thanks Leo, Ryan & Aaron) and Ed is sleeping soundly with a couple of bites of Kristin's homemade jello in his tummy.  Much better than the hospital cafeteria stuff.  Kevin & Joann came by with a photo album of pics from some lakehouse trips, which really boosted Ed's spirits.  He's already busy planning some summer parties and a long distance motorcyle trip for late summer. 

That's it for tonight.  I'll let you all know how he does with the first chemo later today.