I have finished my Day 1 IV push of Vincristine, 2 hour push of Methotrexate, and 22 hour IV drip of Methotrexate. I have mostly finished Day 2 lumbar puncture with Methotrexate and 2 hour drip of Cytarabine. Still feeling pretty good. I have been trying to find other people my age with Acute Lymphoblastic Leukemia, but 80% of cases occcur in kids ages 2-5 and the rest in adults over age 50. The chances of me having it at this age is so slim. Plus it is more common in males. So strange. I know you cant believe everything on the internet but this site had some interesting information on my cancer.
http://en.wikipedia.org/wiki/Acute_lymphoblastic_leukemia

Platelets finally made it!

I am officially checked in to UW Medical Center to receive my chemo therapy. My platelets were at 51 yesterday, and they have to be above 50 to start treatment. Barely made it ; ) I should be out within 4 days, as soon as the methatrexate is out of my system.

Christmas

I would like to thank everyone who helped make our Christmas special. Thank-you for all the warm wishes, food, gifts, support, lights, firetruck visit and decorations. We had a wonderful Christmas. These are pics of Loghan exploring the firetruck on Christmas Eve, putting up Christmas lights, and Loghan with Santa.

Trying again for next Wednesday...

I still did not have enough platelets to go into the hospital this week. (Darn, I wont be in over Christmas ; ) I did do an outpatient round of chemo and on Monday. I am going to have a lumbar puncture with Methatrexate chemo injection. I am also taking high doses of steroids to help keep cancer away and boost my platelets. It is nice that I am still doing something to make sure the cancer doesn't come back while waiting to get back in the hospital.

Waiting...

My platelets are still not high enough for chemo, so today I had a platelet transfusion instead of checking into the hospital. I will go back Monday for labs to see if I can check in Tuesday for chemo. This would mean me being in the hospital for Christmas. Bummer.

I was very dissapointed to learn yesterday that my platelets are still not high enough to start chemo. I will go back in Thurs and try for a Friday chemo start date. Dr. says I'm a bit of a mystery on why my count is taking so long to come back up. I just pray that it does not take this long between every round or I will be going through this much longer then I thought. I want to start this 4th round, then I will be officially past the halfway point.

Thursday

I went in Thursday to meet with Dr. Shustov. He said that my final bone marrow results show no leukemia cells. (and that it is a very sensitive test) This lessens the chance that I would need a bone marrow transplant. It also means that cancer is not the reason my blood numbers are not coming up. In the bone marrow I had a lot of immature cells, so soon these cells will be out in my blood and my counts will come up. I have a tentative date of Tuesday to start the next round of chemo. I received blood today, and will get platelets tomorrow. Monday I will have my counts checked and if everything is high enough I'll check into the hospital on Tuesday.

Blood Counts

The preliminary bone marrow biopsy shows no leukemia cells in the marrow. We are still waiting for the official results. I have an appointment Thursday on how to proceed because my platelets are still not high enough for chemo. I had to get platelets infused today. Trying to stay positive.

Delayed Again

My blood counts are still too low to go back in for chemo, so it is delayed again. I have no set date. Tomorrow, I'm going in for platelets and red blood cells. Monday I'm going in for a bone marrow biopsy to see why my blood counts are not coming up.

I had low platelets, so I went in and received some today. They look like stale beer. Luckily, it only takes about half an hour to get them. I appreciate all that donate platelets because I know it is quite the process. Also, got a call from SCCA and I may have to wait until next Monday to start chemo. Shortage of beds after holiday weekend.

Chemo delayed to Friday

I went to see if I had good enough blood counts to start chemo tomorrow (Tuesday) and found out my white blood cells are too low. Friday is the new goal date. I need to take WBC making shots in the meantime.

Very Tired

I've been dealing with insomnia for the last week or so. I've tried every RX they will give me with no avail. I'm learning some late night shows and some are so boring they help to get to sleep. Still headed up for chemo Tues as long as my counts are good. I also bought a nice wig so I can feel normal slighty. Post pic later.

Free till After Thanksgiving

I went into the SCCA yesterday for lumbar puncture, and some more chemo, but dont have to go back inpatient at UW until after Thanksgiving, I know it's a long drive up there, but if anyone wants to come visit 5 days gets really lonely. Especially when I'm feeling ok. So, if anyone wants to brave the traffic call me. Or call Travis to see how I'm feeling.

Blood Transfusion

I spent Friday getting a blood tranfusion. I takes about 6-7 hours to get 2 Liters. I get a premed of Tylenol and Bendryl so I usually sleep for a couple of hours, but the rest of the time is pretty boring. I feel better before even leaving the transfusion room. Thanks to all that donate-especially A+.

I was feeling so much better Saturday, that after a hydration session, Travis, Loghan, and I went out to the Hood Canal for a couple hours. I needed out of the house for awhile and right now I have no WBC to be around people. The fresh air was great. Loghan and Travis looked for crabs. I drank hot tea and watched.

Outta the Hospital,,finished round 3.

I ended up five nights in the hospital. I was really sick this round and still recovering. The side affect of one of the chemos has slightly numbed the tip of my tongue making it hard to talk. Started eating more to gain back some weight.

Back at UW

I am now back at the UW Medical Center getting my 3rd round of chemo in-patient. I am on Cyclophosphamide every 12 hours right now with a 24-hour Mesna drip to protect my bladder. Feeling OK right now, so a little bored. Today is Loghan's birthday. Amber is babysitting because daycare is closed for Veterans Day. Set up for a lumbar puncture later today with a chemo push. I'll update as things change.

Good News

I got a call from my Dr. in Seattle...good news. The bone marrow biopsy came back with .001% leukemia in the bone marrow. This means that the treatment in working. I originally started with slightly under 10%. The nurse up in Seattle also called and said the bone marrow was clean. So, either way it's good news. Now I'm just trying to get myslef mentally ready to go back to the hospital for the next round Tuesday. Just a side note, Travis told me today that when he squishes my head together I look like the a hairless cat. Good thing I have a sense of humor : )

The last week has been very busy for me. I've gotten a calcium infusion, hydration, blood transfusion, 2 platelet transfusion, chemo-Vinchristine, lumbar punture for chemo, and a bone marrow tap. I should be going back into the hospital next week for my next round of inpatient chemo. This round I had a lot more nasea and vomiting then the first round. The family is holding up well. Loghan is going to full-time daycare-thanks Ms. Monique. Travis is still working full time and his work lets him take me to appointments when needed. My Mom was also able to take me to Seattle this week.

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.