Saturday, April 5, 2008

Welcome to Hodgkins

Hi everyone,
so, this is my first blog. welcome. sorry to bring you here under such saddening circumstances, but you know what? i don't have it so bad.

So, i'll begin and end: for some of you this will be a reminder, or for others as a first trip on this road of discovery that I have found myself so quickly placed. almost 4 weeks ago to yesterday, i went to get a chest x-ray for a swollen lymph node, that I had found on my neck. I'll back up a tinny bit to describe what led me to the radiologist on this day. I had been to the doctor weeks before because I had a patch of dry skin above my collarbone; just a simple patch of itch skin, but with a tiny lump beneath it. The doctor gave me some meds and said that if the skin cleared, but the bump didn't go away, we'd do a chest x-ray.

So, on March 7 I drove myself to the radiologist and got my chest x-ray'd. no biggie, just routine. . .until I was told to go back to my doctor's office immediately to discuss the results. my stomach dropped. I'm sure you can all imagine what my nerves were doing at this time. I felt like a celebrity though, no wait, just walked right back into the doctor's room. I was told, from just this one radiology report, that they believed I had Lymphoma, quite possibly Hodgkins Disease. You know those moments in movies, where life stops and the antagonist's focus hones in on one detail and the rest of the screen becomes fuzzy? that was me. that was my experience. for the rest of the day i walked around feeling this very clear reality, with no care for what the rest of the world was doing; no care for the future or the past, but this moment of instant awareness. it was pretty unbelievable. i could say i was scared, which i was. . . but i also felt dumbfounded. what happens now? what happens tomorrow? how can life go on knowing that this is happening?

went on it has, at an extremeley slow slow pace, but moving along just as it has before, but with that awareness to guide me.

so, i went back to the doctor with my husband brett, just to hear the repeat and have him hear it so I wouldn't be the only one in this crazy dream. i needed proof that i wasn't still dreaming. i asked the doctor, is there a chance that this could be nothing at all? . . .probably not. i could hear the gravity now placed on brett's shoulder and not just my own anymore.

March 11
the next week i was scheduled in to go see an Ear Nose and Throat specialist to take a needle biopsy from the swollen lymph node.

more waiting. . .

March 18
The results are back, but inconclusive, it is most likely still Hodgkins Lymphoma. They scheduled me in for a full-on surgical biopsy to remove the lymph node from my neck.

March 24
i was a bit nervous this day. I've never had surgery and really have to be honest, hate hospitals. i asked to see my lymph node though. it was the size of a big jelly bean. this is all still so surreal.

March 28
I schedule my own PET scan. Positron Emission Tomography

a side note with all of this: What they don't tell you when you begin experiencing a cancer, is that you have now become your own doctor, you own decider. my doctor was great to me, when i needed her, but hadn't set up any scans for me, no blood work, nothing. the ENT doctor was equally as distances from me. I wasn't HIS regular patient, so why should he set anything up? at least that what it felt like to me. I felt like i was floating in between doctors, with no one to look out for me but myself. it was an awful awful feeling. who would give me my final results? if it hadn't been for my friend, who had been through the exact same thing as me, i might not have known what to do or how to handle it. A few things she told me:
1. if it is Hodgkin's, they will not be able to get results from a needle biopsy. which we already knew to be true, and. . .
2. if it is Hodgki'ns, you will need a PET scan
so, i set one up myself.

that same day my doctor called me up to tell me that the PET scan showed that the cancer was a fairly large mass in between my lungs. It isn't a tumor though, at this point they are just swollen lymph nodes in between my lungs, measuring 13cm in diameter. This is considered, what the doctor's call, bulky disease. it indicates that the mass of swollen nodes is almost a third the size of my chest. more critical than anything, because it's pushing against my esophagus (which is causing a slight cough) and could potentially push against my heart!
good news is that the disease is contained above my diaphragm which puts me at stage 11 Hodgkin's. once it goes below the diaphragm it becomes a bit more serious.

April Fool's!!
My results are in. I have Hodgkin's Disease, Nodular-sclerosing kind.
here are the stats. Hodgkin's Disease is a disease of the lymphatic system (your immune system in your body that fights off infection). The lymphatic system runs through your body like blood circulation - the tubes branch through all parts of the body like the arteries and veins, except that the lymphatic system carries a colourless liquid called 'lymph'. When lymph nodes are swollen they are most likely infected or trying t fight off infection. In this case, it's rather ironic that the thing it's trying to fight off is attacking just it. you might feel them in your neck when you get sick with a cold. not a big deal usually.

anyway, Hodgkin's accounts for a small percentage of patients afflicted with Lymphoma cancer (i've heard anywhere from 20-30% of Lymphoma patients). there are 5 types of Hodgkin's Lymphoma and around 25 types of Non-Hodgkin's Lymhpoma (NHL).

It's odd, but the final conclusion left me relieved. To actually know what i'm in for, to know what to fight for is a blessing. it's no longer an unknown. I am luckier than most to be able to be treated and live a normal life after all of this. They say that this type of cancer is treatable and often times curable by a 90% margin. so there is a lot of hope.

April 2
I have also gone ahead and set up my own appointments with oncologists long before this date. my friend who had the same disease put me in touch with her doctor down at Stanford and my friend's mom Gail, put me in touch with her doctors of oncology at UCSF and SFOA. I am lucky to be living here in such an amazingly advanced area in the United States, with access to some of the best hospitals and research centers in the world.

I've made my decision to be treated down at Stanford. They are world reknowned for their study and treatment of Hodgkins patients. it's almost a no-brainer.

I will have 12 weeks of chemo once a week. Every Monday. then, for weeks of Radiation. For any of you around here in the bay area, I would love to have people to take me to my chemo sessions. They say that I shouldn't drive myself.

So, a little more than 4 weeks to the day that I went in for that chest x-ray, and i'm starting treatment!

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