The past two months

Eric's had a lipoma (a benign fatty tumor) on his bicep for years which was never problematic. It's not until they become problematic they are surgically removed and so Eric was scheduled to have his removed in day surgery on November 16. Following normal pre-surgery protocol, he had blood drawn the day before surgery which resulted in a finding of a critically low blood platelet count of 37 compared to the norm which is 150-400. Since platelets are necessary for blood clotting and preventing uncontrollable bleeding, the surgery was canceled and Eric referred to a hematologist/oncologist.

Here's a picture of the lipoma

Following a series of blood tests, a CT scan, and an excruciatingly painful bone marrow biopsy, Eric was presented with a diagnosis of stage IV Chronic Lymphocytic Leukemia/ Small Cell Lymphocytic Lymphoma (CLL/SLL), an incurable but "managrable" blood cancer (chronic). These are two diseases that are treated identically and usually referred to jointly, however, Eric technically has the latter, the lymphoma. Our understanding of "manageable" is that, with treatment, the disease goes into remission but always returns, with the length of those remissions always an unknown: perhaps a year, perhaps two, perhaps more.

Before proceeding with treatment at the local facility where we had been going, we talked it over and decided we should check out M.D. Anderson first. We never looked back. So began another round of diagnostic testing, including a PET/ CT scan and two additional bone marrow biopsies. The results showed several enlarged lymph nodes but, according to the doctor, none that are "exceptionally large" and, best of all, no metastases in any other organs, and no enlargement of the spleen or involvement of the liver. The bone marrow showed about 50% infiltration of disease. Eric was scheduled to begin a 6 month course of chemotherapy,  receiving Rituxan and Bendamustine infusions over two day periods every 28 days, with his first treatment on 12/21.

The first day of chemo started out well for about the first 4 hours until the side effects of Rituxin that we had been warned about started to kick in: extreme nausea, uncontrollable chills and trembling, fever, body aches, malaise. The total treatment took about 10 hours or so. Eric ran a fever all night which was scary, but by morning he felt pretty well as we headed back to M. D. Anderson for day two of the treatment (12/22) which consists only of the Bendamustine. The infusion time was much shorter, we were only there a couple of hours, and, best of all, Eric felt pretty normal, even well enough to play golf the next day (12/23).

We were happy to be able to celebrate Christmas, finally. By Christmas night, everyone started dropping like flies with the flu, starting with Jackie. By the 28th, it had hit all of us who had been together for Christmas and not had the flu shot (except Nicole): Jackie, Jessica, Allison, Mark, Joey, and me. With Eric's severely compromised immunity (part of his disease) we made sure he got his flu shot right after his diagnosis but there was still concern that he could catch the flu despite having had the shot. On 12/31 he was feeling achy and tired but didnt seem to have any of the upper respiratory symptoms everyone else had. Late in the day on 1/1, Eric noticed he was breaking out in hives and some sort of rash all over his head, face, and neck. He started taking benadryl but didnt want to go to the ER. The next morning,  Thursday, 1/2, it was shocking how horribly it had evolved into a much worse condition with thousands and thousands of tiny red dots covering him. The doctor ordered him to the Anderson ER where he received a blood platelet transfusion because his platelets were down to 8. Instead of coming for the usual Saturday blood work, the doc said to come on Sunday, 1/5, which we did, to find the platelets down to a frightening 2, followed by another trip to the ER and then admission to the hospital.

 Here's a picture of the petechiae, the "red dots."

  A secondary illness was diagnosed: Immune Thrombocytopenic Purpura (ITP), a blood disorder caused by low platelets. Those thousands of tiny red dots (petechiae) were caused by internally bleeding capillaries, just below the skin surface. Eric's bone marrow is producing platelets, but his spleen sees them as a foreign body and immediately destroys them. The first line of treatment has been several transfusions of immunoglobulin,  additional platelets, and mega doses of prednisone. The prednisone is not something that can be given indefinitely so it will be tapered off over the course of a couple of months. The new doctor, a benign hematologist,  who is managing the ITP, said Eric's platelets are expected to be in the normal range (150-400) over the next week but are also expected to drop as the prednisone is decreased, although in about 20% of patients they are sustained. As the cancer improves with chemotherapy, so should the ITP. It will just have to be managed by the various lines of available treatments, and the platelets monitored, until then. With a remarkably improved platelet count of 99, Eric was released from the hospital Wednesday, 1/8. He returned to work on 1/9. Under normal circumstances he probably would have taken another day or two off but he started a new job on 12/30 and had only been able to work for two days prior to all these complications. Aside from fatigue and the bloating caused by the prednisone, he feels pretty well physically.

Next up is blood work and getting results on 1/11 beginning at 7 AM.

Maureen