Shooting Myself Up

I was up at the SCCA on Monday to learn how to shoot myself up with Neupogen. This helps boost my WBC counts. My Mom did the first one-I was too shaky. But today, I officially did it on my own. Not too bad. This is the set-up.

University of Washington continued..

The first day went really well. We used webcams to talk in the evenings. Loghan loves looking at himself on the computer. I did not have much side effects from the chemo treatment. Every 12 hours they gave me an anti-nausea medications. On the second day, I got the chemo done in my spine. This is what really got to me. I had a spinal headache for the next couple of days. I found that at that point the only thing that feels good is to curl up in bed and call for meds when it starts to hurt again. TV is not even an option at that point because my vision was so blurry. All this time I am on 24IV hydration, so I have to pee constantly. The Drs. suggested coffee to help with the headache, so I ordered up a big cup. As soon as I had it gulped down, it came right back up. I had not really had coffee since my diagnosis, so I guess it did not agree with me. I got to go home on Sunday night.

University of Washington

I got the call at about 9:30 this morning that a bed was ready for me at the UW. Tara (sister-in- law) and I were off to Seattle. I checked in to my new room for the next five days: 7308. At least all of the rooms are singles-no roomates. For those interested in the medical specifics....I'm currently sitting with an IV of bicarbonate fluids to turn the PH of my urine, so that the chemo-Methatraxate doesn't destroy my bladder. Next, I'm getting an IV push of Vinchristine. Then, the next four days are Methatrexate and 2 doses of chemo into my spine. Since this is a planned hospital visit I had a lot more time to get all worked up. I hope these 5 days go by fast and I am home in my own bed shortly.

Seattle Cancer Care Alliance

Today, I met with a T-cell specialist, Dr. Shustov, at the SCCA. We decided that I am going to do my primary care up at the SCCA, and follow up labs in Puyallup. The SCCA is more prepared for my type of cancer. I also found out that my cancer is also callled agressive lymphoblastic lymphoma or leukemia. (ALL) The SCCA wants to treat my cancer more agressively then I am being treated in Puyallup. He says there are better results when young adults are treated like pediatric patients are treated. So, I am checking into the UW medical center for my next round of chemo on Wednesday. Instead of waiting a set amount of time in between treatments, we are going to do each round once my counts are high enough. This way I am getting more treatments in a faster amount of time, not giving the lymphoma time to come back. Thanks to Kelsie and Travis for supporting me at my appointment today.

Bald!

Here are my before, during, and after pics.

Sunday night we decided it was time to shave my head. Travis was more than willing : ) My hair was coming out in clumps, which made for some wierd looking bald spots. I feel a lot lighter and my head is a lot colder. Loghan doesn't seem to care. He pulls off my hat and pats my head. I was a little worried that I would scare him, but he does not seem to mind. I tried wearing my wig today, but I felt like a bank robber. After about 20 minutes with it on I got a huge headache. I ended up just wearing a hat. I'm going to go wig shopping and maybe I'll be able to find a better fit. Travis has been very supportive, letting me know I still look fine.

Back to the Hospital

Saturday evening I came down with a fever of 101 degrees for a few hours. The oncologist decided that I needed to head to the Good Sam ER. That made for an interesting Saturday night. It's amazing how much action there is in a Puyallup ER. Travis hung out in the ER while I sat in the car so that I would not have to hang out with the germy people. Three hours later I finally got a room in the ER. After tons of tests I was put on a couple rounds of IV antibiotics and admitted to the oncology floor for the night. Loghan got to spend the night at Grandma and Grandpas. I got to go home Sunday afternoon.

Since the Hospital...

Here is a picture of what my chest looks like right now. Port on one side-Hickman line on the other. Loghan says I have "owies." I feel like I could pull off the Bride of Frankenstein for Halloween.

Once the chemo was over and the risk of tumor lysis (tumor exploding-overwhelming the kidneys) was over, I was sent home from the hospital. The nurses and staff at the hospital are great, but the constant monitoring and being always hooked up to machines gets really frustrating. Back at home I spent several days not far from my bed or couch. I had lots of nausea, pain, vomitting, and just not generally feeling good. The trade off for being out of the hospital is that I have to go into the oncology office everyday for everything from infusions, hydrations, Dr. visits, and WBC booster shots. (including the weekends) The next round of chemo starts next week. I am also going in on Monday to the Seattle Cancer Care Alliance to get a second opinion for my treatment. They have a Dr. who is supposed to be familiar with the T-cell lymphomas.

Wenatchee Vacation Pics

Here are some pics of our trip to Wenatchee-when I first learned of the cancer.

The Discovery

It all started with a slight pain in my mid-back left-hand side. It started like a PMS pain, maybe a pulled muscle. It wasn't bad enough for pain meds-just slightly uncomfortable. Over the next week it got worse. I started taking Aleve and Tylenol. Even these started not working. We were in Wenatchee, staying in a cabin on the river for the last vacation of the summer. I decided I needed to go to walk in ER clinic at the hospital in Wenatchee because the pain just seemed to be getting worse and I at least wanted some good pain medications so I could enjoy the rest of my vacation.
Once back in the ER, they decided I needed an ultrasound. Maybe I had a kidney stone. I knew things didn't look good when the ultrasound technician said "hmmm" I need to go get the boss. Then both of them started going to town taking pics of lungs, heart, and all over my abdomen.
Then, I was off to a chest x-ray. The ER doc explained that the x-ray showed an enlarged heart, pleural effusion (fluid in lung), and some large masses in my chest. He wanted a CT scan.
Once the CT scan came back, the ER doc told me to get straight home and see my Dr. on Monday. They wouldn't give a diagnosis, but said that I had a lot of suspicious masses in my torso. The most likely cause of the pain was a mass between my heart and lung-causing the fluid build-up. I had noticed I was a little short of breath the last couple of days, but I thought it was just because of the pain in my back. So, I had an idea that I might have cancer at this point. I had to wait until Monday to get more answers. (This was Friday-it made for a long weekend)
We decided not to head straight home, since there was nothing I could do until Monday. A prescription of Percocet made the rest of the vacation much more enjoyable : )
Monday finally came. I started out with an appointment with my general Dr. He pretty much told me looks like cancer and sent me to an oncologist later in the day. (BTW he did charge full office visit for this) I got into the oncologist at 4:30 on Monday. He got me set up for lots of tests and surgeries for the rest of the week. The week was a blur of biopsies, lung draining, PET scans, stent placement, Hickman placement, ect. By Friday I was admitted into the hospital and started on chemo. Because of the aggressiveness of the cancer, I had to get chemo in the hospital. Apparently the chemo I need for the first 4 rounds is really harsh. Worse then the CHOP people talk about.
My official diagnosis: NON HODGKINS LYMPHOMA-T CELL TYPE STAGE 4. 95% of people with non-hodgkins lymphoma have B-cell type.