The Post You’ve Been Waiting For May 2, 2007

Now that you’ve had time to feel some of Susie’s emotional and physical pains, I thought I’d give you more factual details of what is happening with her, and what will be happening in the future. Before I do, though, I must say that watching her get the bone marrow biopsy was one of the toughest things I have had to go through. I have never seen her in so much pain and the worst part was that there was nothing I could do to help except hold her hand and let her know that I was right next to her.

Before I get into the facts, here’s the long awaited bone marrow biopsy video clip from Fox network’s “House.” This short, non-commercial, educational, video clip shows two biopsy procedures, the first with the patient sedated and the second with the patient not sedated. Susan was not sedated for her biopsy.

Here are the facts:

1. She has stage IIA Hodgkin’s disease. This is a downgrade from her preliminary stage IIIA diagnosis. The downgrade occurred as a result of further viewing of the CT and PET scans, which apparently don’t show cancer near her liver after all. Stage II essentially means that cancer has spread to multiple lymph nodes about the diaphragm, and stage III means that the cancer is both above and below the diaphragm (usually near the liver). The oncologist said that the mass that the radiologist originally saw was probably just her normal lymph node. This is good news, but, unfortunately, it doesn’t change the treatment plan at all.

1.A. Susie believes that this is a miracle. A large mass in the CT is not showing up as cancerous in the PET scan. She feels that this is a miracle.

2 . The specific type of Hodgkin’s disease is nodular sclerosing, which means that there are large nodes surrounded by scar tissue. The masses between her lungs are of the “bulky” variety, which means the nodes are large. With bulky masses, both chemotherapy and radiation are used in order to increase the likelihood of removing all cancerous cells, as well as to reduce the risk of the same cancer coming back.

3. The treatment plan comprises 6 cycles of ABVD chemotherapy, where each cycle comprises two chemotherapy sessions that are two weeks apart. Thus, each cycle takes four weeks. We’re told that the chemotherapy sessions last about two hours. After the first 4 cycles, she will have another PET scan (the one that makes her radioactive for a day) to see how much, if any, cancerous mass remains. They expect that there will be no detectable cancer at that point in time. However, two additional cycles are administered in order to make sure that even the small masses of cancerous cells that are not detectable by the PET scan are killed. We will talk to a radiation oncologist at some point after the chemotherapy starts, probably after the fourth cycle and the PET scan are complete, to determine how many radiation sessions she will need. The radiation, like the last two chemotherapy cycles, sounds like something that is done in an overabundance of caution, just to make sure that all of the bad guys are dead.

4. ABVD comprises a cocktail of 4 “poisons,” each one with unique cell killing abilities and side effects. The oncologist went through some of the most common side effects of each drug in the cocktail, but I couldn’t write fast enough to get them all down on my notepad. Here are a few that I did record:

A (Adriamycin): nausea and vomiting
B (Bleomycin): skin changes, lines in skin, lung complications; we’re supposed to let the doctor know if she has any lung or chest problems and the “B” may be taken out of the cocktail, if necessary
V (Vinblastine): numbness and tingling in finger and toes; constipation
D (Dacarbazine): flu-like illnesses, low white blood cell counts, nausea, and vomiting
5. The ABVD will cause 100% hair loss within 2-3 weeks of her first chemo session.

6. The ABVD dosage is based on her “body surface area,” so she will get just the right amount of poison for her body.

7. The day after each ABVD session, she will return to the hospital for a Neulasta shot, which is a medication that helps your body make more white blood cells, to counteract the effect of the chemotherapy killing many of the white blood cells. This is supposed to allow her to maintain her white blood cell count at an acceptable level so that she doesn’t need to live in a bubble.

8. Next Monday (5/7) she will have a PassPort IV access port installed into her arm/shoulder. This is a drum-shaped device that is surgically placed under the skin of the upper arm and a catheter extends into a large vein in the shoulder/chest area. The device is covered by a skin flap so that it does not extend from the body. It is accessed by sticking a needle through the skin flap into the device. This should make the chemotherapy, Nuelesta shots, and blood tests, more bearable.

9. She will also have a heart echo gram on Monday (5/7) to determine if any special precautions need to be taken because of heart abnormalities. We will have an orientation at the chemo lab that afternoon also.

10. Monday (5/7) is also Susie’s 28th Birthday. Happy birthday, sweetheart!

11. Tuesday (5/8) is her first chemo session. The doctor said that on Tuesday afternoon she will be the world’s leading expert on how chemotherapy affects Susan. I’m sure she will have some choice words to share with all lymphomania bloggers several hours (or days) after the treatment when she is physically capable to do so.

Well, that’s about all I can tell you. You now know as much as I do about Susan’s Hodgkin’s disease. We appreciate your continued concern and support through this ordeal. Oh yeah, my car needs washed.