Lymphoma is a blood cancer. So much of my recovery is wrapped up in blood, and blood products, that I realized early on I can’t allow myself to be too squeamish about this whole process if I want to write about it with anything approaching honesty.
As I’ve mentioned before, blood cancer is not a stranger to our home. Gerry’s been dealing with Multiple Myeloma (a bone marrow cancer, a sister cancer to lymphoma) so in a weird way this experience is NOT as foreign to us both as it might have been. Once again, Gerry goes ahead and quietly forges a path for us both to walk.
The point of my chemotherapy (R-Chop is the term used to describe the cocktail I’m being given) is to throw some VERY powerful drugs at my cancer until it yells “Uncle!”
Hopefully the cancer will give up before my body does!
Here’s a brief explanation from The American Cancer Society’s webpage on R-Chop and a cancer similar to my own diagnosis. It gives me a vague idea of what I might expect going forward:
Diffuse large B-cell lymphoma
Diffuse large B-cell lymphoma (DLBCL) tends to grow quickly. Most often, the treatment is chemotherapy (chemo), usually with a regimen of 4 drugs known as CHOP (cyclophosphamide, doxorubicin, vincristine, and prednisone), plus the monoclonal antibody rituximab (Rituxan). This regimen, known as R-CHOP, is most often given in cycles 3 weeks apart. Because this regimen contains the drug doxorubicin, which can damage the heart, it may not be suitable for patients with heart problems, so other chemo regimens may be used instead.
Stage I or II
For DLBCL that is only in 1 or 2 lymph node groups on the same side of the diaphragm (the thin muscle that separates the chest from the abdomen), R-CHOP is often given for 3 to 6 cycles, which might be followed by radiation therapy to the affected lymph node areas.
Stage III or IV
Most doctors will give 6 cycles of R-CHOP as first-line treatment. After several cycles, doctors may get imaging tests such as a PET/CT scan to see how well treatment is working. People who have a higher risk of the lymphoma coming back later in the tissues around the brain and spinal cord may be treated with chemo injected into the spinal fluid (called intrathecal chemotherapy). Another option is to give high doses of methotrexate intravenously. (This drug can pass into the spinal fluid.)
For younger patients with a higher risk of the lymphoma coming back based on the International Prognostic Index (IPI) score, high-dose chemo followed by a stem cell transplant might be an option. But it’s not yet clear if transplants are better as the initial treatment. Most doctors feel that if a transplant is done as part of the first treatment, it should be done in a clinical trial.
If the lymphoma doesn’t go away completely with treatment or if it recurs (comes back) after treatment, doctors will usually suggest another chemo regimen.
Several different regimens can be used, and they may or may not include rituximab. If the lymphoma shrinks with this treatment, it might be followed by a stem cell transplant if possible, as it offers the best chance of curing the lymphoma. Stem cell transplants are not effective unless the lymphoma responds to chemo. Unfortunately, not everyone is healthy enough for a stem cell transplant.
DLBCL can be cured in about half of all patients, but the stage of the disease and the IPI score can have a large effect on this. Patients with lower stages have better survival rates, as do patients with lower IPI scores.
The Mighty Hemo
One of the best indicators of the success of my therapy can be found in my labs (the tests that they put my blood through to see how well I’m holding up.) Three of the main tests that my medical team looks at are Platelet Counts, White & Red Blood Cell Counts and Hemoglobin.
Back in October/November, when I was beginning to feel SO exhausted that I started to lose hope that I’d be able to continue working on ModeKnit Yarn much longer*, I discovered that my hemoglobin was hovering around 11. While that’s not bad, it’s not great for an otherwise healthy woman, and it WAS an indication that something might be up.
But at this point in my chemotherapy 11.2 is actually quite good for my hemoglobin, and I’ve been able to keep that level up. I think it’s dumb luck, I really don’t think I’m doing anything so much better than anyone else, but I HAVE been trying to eat a lot of good protein (salmon, yogurt, eggs, nuts) and iron rich foods (spinach, raisins) and that might be helping.
My platelet count is 228, not stellar, but not bad at all for someone who has just undergone a week of chemo. White Blood Cell and Red Blood Cell counts are 3.4 ad 3.94, respectively, which is also not bad.
This will change, I’m certain. As my recovery progresses I’m sure I’ll have weeks when the numbers aren’t as good as this, and I’ll probably need a transfusion at that time. But the BIG NEWS THIS WEEK is that I do NOT require a transfusion.
Well, not today. There’s always a chance I’ll need one on Friday.
The Nurse/Practitioner was very happy with my numbers, and so was I! Because it’s August, everyone is on vacation, so he is a fill-in from Woodwinds Hospital in Woodbury, but he was a very nice guy and we had a great visit today.
So as exhausted and in pain as I was, dragging my sorry butt into St. John’s Cancer Center for a blood draw through my port, and came out feeling exhausted, but a bit victorious!
I need to caution myself, though, that
if when I DO need a transfusion in future, it will not be some kind of failure, but simply the need to do for my body what it requires.
* This was a fear I lived with, quietly, for the past 9 months or so. I would refer to my exhaustion every now and then to Kathleen, but mostly what I felt was shame that it seemed that I was unable to keep up my part of our work agreement.
Of course, NOW I know that my body was battling Cancer, but at the time I thought I was just ageing very quickly, or maybe being lazy.
I discovered during this period that sometimes, when I felt at the nadir of my strength, along would come a chilling fear that I’d NEVER have more strength. A feeling like, “I will NEVER feel better than I do at this moment.” It felt like the very definition of hopelessness.
As scary and overwhelming as the word CANCER is, it’s far LESS terrifying than the abject fear that I would NEVER feel any better than I did last November. The diagnosis of Cancer has given me a bit of hope, and that’s worth gold.
THIS is why I feel lucky. I feel that I’ve been given a chance to see the horizon, where before the diagnosis it was just a foggy bank of pain over in the distance. Now I have a direction where I can look, and dream.