Thursday, December 15, 2005

I Really Didn't Know I Was Sick

A friend suggested I start a blog since I have so much time on my hands now. I'm a newbie, so bare with me. I feel the need to explain myself. My life has changed, rapidly. Beginning this past November, 2005:

Downsized by my Company last March. More annoyed with them then my previous employer, I decided to give my profession a break and work in a Restaurant for a while. My Banff trip in August was a bust and it really knocked me for a loop. It was my dream Backpacking Trip. I've always lived in the East and fell in Love with the Rockies last year while backpacking Glacier NP. I planned a trip with five others from across the Nation. It was my trip. My plans. It took maybe 6 months. I was trip Leader. I flew into Bozeman, MT and met most of the other backpackers. We drove to the border and I was refused entry from an overzealous Canadian Border Guard. One of our comrades was waiting for us in Banff. The other four decided to go ahead without me. I couldn't blame them. Some had traveled as far as I had.

I fell into a deep funk. Then it "started".

I haven't been feeling well for a while but it was very low on my radar, nothing was screaming at me. I've been itchy for 6-9 months but I thought it was dry skin. I had a persistent cough (mostly at night) with minor, clear, sputum, and I thought it was a smokers hack.
I would feel slightly feverish every once in a while but it would go away. My digital thermometer never indicated any fever.

I quit smoking in September. Mostly. Kind of. I had quit before. The longest was for 3yrs. This was difficult. I was a Bartendar at the time. So hard to tend bar and not smoke. But I did my best. I went from smoking 1-1.5 packs/day to 1-3 cigarrettes/shift. Hoping I could kick it completely.

Then came Halloween Eve. I was shaving and noticed my left cervical lymph node was the size of an egg. Big deal, I thought. I have an infection. Six days later I noticed two swollen lymph nodes in my groin......F***, I thought. That's bad. That's really bad. I tried not to think of it.

I called my doctor at 8AM the next day and they squeezed me in for 9:30AM.
My doctor found swollen nodes all over my body. He ordered a full blood work up, check for CMV & EBV, and an X-Ray. He wanted to do a CT scan but knew I was uninsured.
$560 dollars later he looked at my x-rays and immediately sent me to George Washington (GW) University ER across the street.

November 4th, 2005

The x-ray was "highly abnormal". Looked like Lymphoma but could also be several types of "exotic" infections.

4hrs of waiting and I get a room.

The ER doctors were obviously fighting over the diagnosis. Some wanted to know everywhere I had been, especially if I went out of country. A student was convinced I had lymphoma, and told me so in the most unprofessional way. If I could find here I might wring her neck. The talk of Cancer was upsetting my soon to be Fiance more than I.

They took several blood samples, started 2 antibiotic drips, and scheduled me for a CT scan. I had a slight fever but was feeling fine and was hungry as hell. They all seemed confounded by my chipper state and the fact that Dani* & I had just gone on a backpacking trip 3 weeks ago.

*Dani is the love of my life and my future wife.

About 6 hrs. in ER and the results came back. Most likely I had Lymphoma. They wanted me to stay in the hospital so they could start right away. Outpatient would be more difficult to schedule tests for.

They take me to a private room where Dani & I shacked up for 3 days. Only once did a nurse dare to announce visiting hours were over. Dani gave her a "look". Needless to say, Dani stayed.

I was still feeling fine in the hospital. They never hooked me up to anything, not even a saline drip. I was given 6-8 Tylenol for my fever and thats it. Dani and I mostly slept, waking up only for the damn internists, internal & surgical students. The occassional doctor, getting my vitals taken, and eating. Dani would pop out for some Whole Foods Goodness, which is what most likely kept me healthy in the hospital.

Come Monday Morning, the Surgeon took my left cervical lymph node out. They wanted the whole thing b/c they were still not convinced it was Lymphoma.

A few hours later an Oncologist paid a visit. Preliminary Pathology indicated Hodgkins Lymphoma.

I needed a PET Scan, MUGA (heart strength), Pulmonary Function Test, and a Bone Marrow biopsy ASAP to start treatment. Social Services had visited with Dani while I was in surgery. These tests were going to cost a fortune and I needed coverage.

We couldn't wait. Dani scheduled all the tests within the week and I followed her, kind of in a daze. Dani paid for the tests, somehow getting 50% off the MUGA test, knocking the price down to $500. PET Scan's are hella expensive, by the way.

Thursday, we see "my" Oncology Dr. He confirms Stage IV Hodgkins Lymphoma, and says the Bone Marrow Biopsy is unneccesary, it's also affected. He wants me to start treatment within days, and classifies me as completely disabled. I have to quit my job. I will be somewhat immunocompromised. Unfortunately, George Washington no longer accepts DC Medicade.

After that, Dani went on a mad scrammble to find a decent doctor. I have an appointment in two days at Georgetown's Lombardi Cancer Center.

I can't over emphasize what Dani has done since my Surgery. She has done in a week what I couldn't have done in a month. From paying for tests, to filling out forms from hell, to getting me into G'town. Which, btw, first gave here a date in late November. That wouldn't do for her, so she pushed her way through for me.

So that's where I stand. Hopefully I start Chemo (ABVD) within the week. The treatment is bimonthly for 6-8 months. If anyone is interested in my diagnosis, it's below. I have no doubt that I'll beat this, if you had to pick a Cancer, this would be a good one.

TTFN! :)

'Scuse the med speak:

images of the head and neck demonstrate intense FDG uptake in the tonsillar regions and in the nasopharynx, as well as multiple bilateral foci of intense FDG uptake in the upper and lower neck, compatible with malignancy.

Tomographic images of the chest show multiple foci...fusing with right and left auxillary lymph nodes, compatible with malignancy.

Multiple the mediastinum, the largest fuses with a large mass in the right peritracheal region....malignancy...

Bilateral lung masses...malignancy...

abdomen & retroperitoneal nodes...malignancy...

bilateral iliac, bilateral inquinal,right upper femoral...tumor adenopathy.

Liver and spleen ROCK!*
Heart ROCKS!*

...left iliac bone near the the left sacroiliac joint...right ischium......malignant skeletal involvement...

no definite evidence of malignancy in vertebra...

1. FDG PET compatible with extensive tumor adenopathy above and below the diaphragm. There is apparent tumor adenopathy in the head and neck, chest, abdomen, and pelvis.
2. Compatible with malignant involvement of both lungs.
3. Compatible with malignant skeletal involvement of the right ischium and left iliac bone mediallly.
4. #&%!$ is probably in the bone marrow.*

Diagnosis: Hodgkins Disease - Stage IV - metastatic

Treatment: Patient [pt.] needs to undergo 12 rounds of ABVD chemotherapy immediately.

Characteristic of Major Disability: Rapidly Progressive
Can the major disability be substantially improved by treatment?: Yes
If yes, anticipated duration: at least 1 year

Physical Capacities: Patient Fully Disabled.

*Patient taking literary liberties with report.

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