Monthly Archives: February 2007

treatment #1 of 16.

Ended up in the hospital (under protest), but turned out to need to be there because of tumor lysis syndrome or whatever threw my stomach into total, utter rebellion.

My face is swollen and I am a sickly yellow color. If you can believe it, I looked even worse this weekend.

My hemoglobin is ridiculously low. I think it was like 7.0 or something, but I'm getting the legal version of EPO (a drug called Aranasep) so hopefully it will come up. Good thing I'm not trying to run competitively right now - I'd flunk the drug test. haha.

The nausea was terrible, but hopefully they can do something about that for the next treatments.

One down and sixteen to go. Wow. This is going to be hard.

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the emotional gamut

I have run the gamut … when I was diagnosed with Hodgkin’s on Valentine’s Day, I actually felt almost relieved. Then I went through a period where I completely freaked out.

The tumor in my stomach that I named “Lumpy” is actually just a whole bunch of swollen, matted lymph nodes. Pretty gross, huh? I have more lymphadenopathy (that just means enlarged lymph nodes) in my chest and neck. The chest and neck lymphadenopathy is causing something called SVC Syndrome. The SVC is an abbreviation for superior vena cava, a large vein that drains your head and upper body. Mine is being compressed, so I have arm pain and a swollen face. My right arm (the side with all the swelling) has distended veins you can actually see. I'm having trouble sleeping lying down right now.

Friday, I start treatment. My doctor, because of the extent of the bulky lymph nodes, wants me in the hospital for the first treatment. He did say he would treat me as an outpatient if I “insisted.” (I think I am going to insist. Hospitals are evil.) Between now and then, I am supposed to get something called a PET scan, a heart scan, a lung test, and I need to get a port put in my chest to get chemo. My dad has a port, it's this little thing they surgically put into your chest to give you chemo so you can avoid the whole IV thing. I am fine with the port - I don't like IVs.

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I guess I have to trust this guy.

I went to see the oncologist today. He treated my dad two years ago for Non-Hodgkin's Lymphoma. He said me and my dad both having lymphoma is like lightning striking the same spot twice. It isn't genetic. I guess that's good ...

I wasn't sure what to make of the oncologist. He seems like a nice guy, although he was kind of blunt. He has an Australian accent, and I wanted to ask him about Australia, but it didn't seem like the right time or place.

One thing I did like about him - my right arm really hurts. It is the reason I went to the doctor in the first place. The surgeons I saw were kind of rough with it - the oncologist was careful with it and said he would make sure to note that no one should do any blood draws or blood pressure stuff on that side. My arm hurts so bad sometimes I wish I could just chop it off. I really mean that - it hurts that much.

OK so anyway, the oncologist said I am really anemic, but that does not necessarily mean I have bone marrow involvement from Hodgkin's. However, I am at least stage III because I have disease in my chest and abdomen. He also said I have a bull neck and young ladies shouldn't have bull necks. I know what he's talking about - I saw a picture of a person with Hodgkin's online and their neck looks like mine: really swollen. He pulled out a tape measure to measure my abdominal mass - maybe I should have been offended by that, but I thought it was funny. Tape measure Lumpy!

I asked him about running. He said if I told you not to run you'd run anyway. So either he reads minds or I am not the first runner he has been stuck dealing with it. Ha! He said he is a runner.

I was there for over an hour, and I think we basically closed the place. He said the treatment will be chemo and its a regimen called ABVD. He said all my hair would fall out and cringed like I was going to yell at him or something - I said I expected that and its ok because the quality of my hair stinks anyway and maybe what will grow back will be better. Bright side, right? He said it would be eight cycles of ABVD and that would not be negotiable (I did notice he likes to say things aren't negotiable). He wants to start it next Friday, so I have to do a bunch of tests between now and then.

It was a lot to take in. And it doesn't help that tonight, I feel terrible. I am having trouble lying down at night - I keep coughing. My face is really swollen up. The oncologist said the mass in my chest is what is causing my face to swell up. He said it is called superior vena cava syndrome. My arm is also killing me even more than usual.

I guess I'm still sort of reeling from the whole thing. Not sure what else to say.

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Diagnosed with Hodgkin’s Disease

We had a huge snowstorm last night. The surgeon called at 11:30 this morning. I missed his call, but his secretary was so nice and she paged him for me and got him immediately. He said I have Hodgkin's Disease, not liver cancer. He said it is potentially curable with chemotherapy. He said I will hear from an oncologist.

I found my dad outside digging out the cars and told him I have Hodgkin's Disease. He hugged me. He had Non-Hodgkin's Lymphoma and he called the doctor who treated him. That doctor called me back like 20 minutes later. No doctor during this whole process has ever called me back quickly - it's always taken days to hear back. So I think I will go with my dad's doctor - either he is desperate for business or he really wants to help. Let's hope it is the latter. haha. See, I still have my sense of humor.

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got blizzard?

The current Cleveland forecast:
Blizzard
Low 13° F
Precip: 100%
Snow and gusty winds will lead to blizzard conditions at times. Low 13F. Winds NE at 20 to 30 mph. 8 to 12 inches of additional snow expected.
I really think I want to go running right now. I’ve never run in an official blizzard before.

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