We had our scheduled call with Dr Norman today to discuss the results of the blood tests, bone marrow biopsy, and CAT scan from last week. We’re getting close to knowing what I’ve got.
He says the evidence is pointing strongly toward lymphoplasmacytic lymphoma. It’s not an aggressive cancer, which is nice. But that very trait also makes it recurrent. You can treat it, most of it will go away, but it will eventually come back again and again.
It sounds like the evidence isn’t totally conclusive yet, though. He’d like to get a tissue sample from an affected lymph node, and so far the only ones we know of are in my abdomen. We’re going to do a PET scan to see if we can find any more accessible ones to remove and dissect. That PET scan isn’t until the beginning of July.
This is starting to take a long time!
Posted in: Diagnostic Phase | Tags: blood tests, bone marrow biopsy, cat scan, dr norman, lymph nodes, lymphoplamacytic lymphoma, pet scan, spleen
Today I went in for my originally scheduled CAT scan; this time they scanned above and below where I was scanned a week ago. They want to reduce the amount of extra radiation that hits my body.
I had to drink two big canisters of a “berry” flavored Barium smoothie as a contrast agent.
Also, using paper tape for immobilizing the contrast IV was awesome. Much better than the plastic that was used last week; having that pulled off was in the realm of the biopsy pain, but more sustained.
I’m thankful for all scheduled medical stuff being done for the week. I need a vacation.
Posted in: Diagnostic Phase | Tags: barium, barium berry, cat scan, group health cooperative, paper tape
I went in for my bone marrow biopsy today during lunchtime. First Dr Norman used a local anesthetic to dull all of the nerves that he could.
Then there was a bunch of stuff that would sound gruesome if I wrote it out; he took a little bit of bone marrow, a little bit of bone, and it really hurt (but the hurt was in short bursts).
Also, my hip bone was so strong that it bent the tip of the tool he used.
Now I have a band-aid on my hip and it hurts to walk. Looking forward to a (hopefully) negative result!
Posted in: Uncategorized | Tags: bone marrow biopsy, dr norman, group health cooperative, pain
Today we met with our Hematologist/Oncologist to get a preliminary evaluation of my situation. He checked all of my easily externally examinable lymph nodes, and didn’t find anything odd. I brought the blood test results, CAT scan images, and everything else I’ve got.
After looking at everything for a little while, he offered his current 80% hunch: Hodgkin’s Lymphoma. The other 20% side of the hunch goes to some sort of currently undetected infection.
He described Hodgkin’s as being quite curable, usually after weeks or months of chemotherapy and sometimes radiation. But before doing anything like that, we first need to find out if the hunch is correct.
The prime way to find out if it’s lymphoma is to biopsy lymph nodes and bone marrow. The bone marrow is no trouble, as hip bones are nice and accessible. If he doesn’t find any cancer in the bone marrow, the next step would be to biopsy one of those abdominal lymph nodes. This gets problematic; my spleen is massive, and is in the way.
He might have to remove it.
First things first, I headed to the lab and have them perform an entire page full of blood tests. Then, in preparation for the possible removal of my spleen, I got some vaccinations for infections that can hit the spleenless hard.
Tomorrow the doctor will be in during his lunch hour to give me a bone marrow biopsy. I can hardly wait!
Posted in: Diagnostic Phase | Tags: blood tests, bone marrow biopsy, cat scan, dr norman, group health cooperative, hodgkin's lymphoma, lymph nodes, splenectomy, splenomegaly
During the last week, the discomfort in my abdomen has steadily disappeared. By Saturday it was as if nothing was awry at all!
On Sunday things changed.
I developed a pain in the left side of my abdomen when I took deep breaths, leaned in certain directions, or did anything that flexed my abs. In fact, anything that pushed my stomach forward caused pain; this included laying down to go to bed.
I spent the next few nights sleeping sitting up. Not so comfortable.
On the advice of Lauren, a friend who also happens to be an EMT, we decided to take me to the ER at Northwest Hospital to expedite the CAT scan. If there was something that needed immediate fixing, we’d really like to know!
After some more blood tests and a CAT scan we were told that there was not an immediate need to operate. However, the diagnosis noted three things:
- Massive Splenomegaly (24cm, when 10cm is normal)
- Intra-Abdominal Lymphadenopathy (abnormal lymph nodes in abdomen)
- Suspicion of Lymphoma
That third one was a big shock. After the Urgent Care visit I’d been pretty convinced that the iron deficiency was making me anemic, and the anemia was making my spleen start to overfunction.
As soon as I got home I called to move that Hematologist/Oncologist appointment up to Monday.
Posted in: Diagnostic Phase | Tags: blood tests, cat scan, emt, lymphoma, northwest hospital, splenomegaly