Day +13

WBC's are now up to .28 or 280 and the neutraphils are .01 or 10. They should start shooting up anyday now! Travis got the keys to the Pete Gross House today. He says that it is cute and cozy. It is a studio. Has it's own washer and dryer.

Day +10

I have started to feel better today. My throat is less sore and I am getting my voice back a little bit.

Day +9

Neutraphils have made a showing, also. (.05) This is a specialized white blood cell.

Day +8 WBC's have come in!

Today, for the first time since my transplant my white blood cells were above zero. There were 150 of them. This means that my new immune system is starting to work. The Dr.s told me that they will probably hover at this low number for at least a few days. They may even go back to "too few to count", but at least they are coming in! The sooner they come in the sooner I will start to feel better. I still have a bad sore throat and sores in my mouth called mucositis. The heart and lung lining inflammation seems to be resolving.

Day +5

The last couple of days have been pretty rough. I went from eating off the menu to eating the occasional Popsicle or milkshake. Now, I am on IV nutrition. This is because the mucositisis so painful in my throat. I am now also on a continuous morphine drip with the option of a boost with a button every 6 minutes. The worst pain was the periocarditis around my heart. This is a swelling of the lining around your heart. Likely this was caused by total body radiation. It made it hard to take a deep breath, lay down, or lay on my side. The doctors did not want to use anything on me the first day because they did not want to interfere with the graft. The usual treatment is simply anti-inflammatories like Ibuprofen. After the second day and second x-ray showing it was growing, they decided to use steroids to treat it. I really started feeling better after the first dose of steroids.
Today, they only gave me 1/4 the dose, because they do not want me on steroids for long. My white blood cells are down to zero, so the race is on for the new WBC's to come in.

Saturday, July 17th UW Medical Center

I officially got my stem cells at 4 AM this morning. So, my new cell birthday is July 17th. Travis stayed the night to help document and celebrate the new beginning. We cheered to the new cells taking hold and growing well in my body and keeping any new cancer out (with sparkling apple/grape juice of course). This is what the stem cells look like, kinda like plasma. I received two bags and promptly fell back asleep due to the Benedryl premed, so that I don't have a reaction to the cells.

To someone out there...yet we may not know each other and may never will, thanks for being so selfless and giving another woman a chance to live a cancer free life, raise her family, love her husband, celebrate with family and friends, and take on life with a new perspective. Your generosity will never be forgotten.

To all my family and friends who helped, donated, or stopped by my fundraising garage sale...thanks so much! It is so inspiring to know I have so many kind hearted, giving, and loving friends and family. I love you.

To all who have sent their thoughts and prayers my way...thank you so much. Please continue to do so, as I have a long road ahead of me. I appreciate them all.

To Travis, thanks for being such a great husband and father. Lesser men would not have been able to take on this type of challenge. You have gone far and beyond for me and Loghan and I love you for that.

Tuesday, Wednesday, and Thursday

I was admitted into the UW Medical Center to start the chemotherapy and get my transplant. Tuesday and Wednesday I received Cytoxan. Thursday is day of no chemo. Tomorrow is the transplant. Anti-nausea pills have been helping me to eat a little bit. Mostly Popsicles, soup, and cream of wheat. My neighbor is on the same regimen as me. He is receiving his stem cells from his sister. Mine are being flown right now from Europe with a courier to SeaTac.

Monday, July 11th

Today I went in for 2 more rounds of total body irradiation. My last 2. Here is a picture of the radiation room. And the torture looking device you get to stand in. I had to stop during both rounds to throw up.

2nd Day of Radiation, Sunday, July 11th

This is a picture of my new Hickman-the old port was taken out.

Today, Travis took me to 8AM radiation. After we got back to the Marriot my Mom took over and Travis went to take Loghan to a birthday party for our good friends 1 year old son. We went over to the SCCA, got labs drawn, and met with the nurse. She suggested upping the amount of anti-nausea medication. Switching between Zofran and Ativan. My Mom took me to the afternoon radiation appointment. I felt a lot better today. I think I got the right mix of meds to keep all the side effects down.

First Day of Radiation, July 10th, Saturday

Today, I headed up to Seattle for my first round of radiation. I have included a picture to give you an idea of what the total body irradiation looks like. I had radiation at 8AM and 2PM. They give 3 rounds to your back and 3 rounds to your front. Half of the rounds have lead blocks to protect your lungs and half do not. I felt good for the first round. Then, we went over to the SCCA, to meet with the nurse, get labs checked, and hook up to my mobile IV hydration. Then, as I went back to the UW for radiation, I started feeling queasy. I ended up throwing up in between rounds. After that I felt a ltitle better and was able to finish. We stayed at the Marriot on Lake Union right near the SCCA. Travis and I got food to go from the restaurant for dinner. Unfortunately, that didn't last long and I threw that up also. I also developed swollen parotid glands and a bad headache. The nurse suggested ice for my glands and drinking Gatorade for my headache. The radiation eats up the hydration in our systems.

Friday, July 9th

I spent my last evening before heading up to Seattle for awhile with my family.

Today, I did not have an appointment until the afternoon. I had time to get ready for my move up to Seattle and cleaning house/washing clothes for the boys. I went up to the SCCA to have my bandage changed, a Hickman care teaching, and a pump class. My Mom drove me up there because 1. I had some Percocet on board and 2. She needed to learn how to take care of the Hickman and how to use the IV pump outpatient. Now, I don't have to go into the clinic just to receive IV hydration. I just hook up to my central line. The radiation starts tomorrow at 8AM. After I start radiation there is no going back. Once radiation starts, I will start losing my blood counts and will need I stem cell "rescue" to bring back my blood counts. It still amazes me that some woman, somewhere in Europe, is willing to give a stranger a chance for a cure. She has passed all of her tests and signed her consents. Soon, I will have her DNA and blood type. Strange.

Thursday July 8th

Today, I got started really early. I needed to get platelets transfused so that I could get my port taken out and Hickman line out in. This is so I would not bleed too much during the surgery. I had to get a peripheral line so that I could receive sedatives during the surgery. Apparently I have a high tolerance for versed and fetanyl, because I was awake and talking through the whole procedure. My nurse told me to warn the nurse the next time I get a procedure done so that they can get more sedative. It was not too bad, because they use lidocaine to numb the areas up. Now, as I am writing this the lidocaine is wearing off and the pain is kicking in. Luckily, Travis just picked up my prescription for Percocet.

Tuesday July 6th and Wednesday July 7th

We had a great 4th of July weekend at the Hood Canal. I had no transplant appointments on Monday.

Tuesday, first I had a lab blood draw. Then, I had a physical therapy appointment. She took a lot of measurements of how far I could bend things. She also tested my strength. Next, I had another meeting with the pharmacist. She went over all my medications, what I needed to get refilled, and explained the meds I would be taking after the transplant. Then, I had the Food Safety and Managing Care At Home class for transplant patients and caregivers. Next, I was off for a CT chest scan. The pulmonologist ordered this after our consult to see if there was any residual scarring on my lungs. My last appointment for the day was an oral exam. The dentist and hygienist took a look at my mouth and said everything looked great. He also explained the complications that can occur in the mouth as a result of transplant. The main one is mucositis. This is sores in the mouth that make it hard to eat and are very painful. It is treated with patient controlled morphine, salt water rinses, and lidocaine swish ("magic mouthwash"). Also, a lot of patients get chronic dry mouth.

Wednesday, I was only supposed to have one appointment. I got a call in the morning to see if I could come early for a lab. A little while later I got another call to see if I could come in even earlier for a MUGGA scan. I went in early and got my first MUGGA scan. This is a test to check the function of your heart. First, they pull some blood. Then, they take that blood and add radioactive isotopes. They inject this blood back into your port. Then they scan your heart for 30 minutes. Next, I met with the transplant doctor and nurse to sign consents. I signed...so no going back now. This is also a time to get all of your questions answered. I asked my nagging question...why do I need to do this??? Well, I didn't ask exactly like that. The doctor explained to me that my disease is very aggressive and is very likely to come back. The transplant may offer a cure...is surely increases the chances. He also explained that since my disease is very rare (t-cell) and less than 500 people in the US have this type, a transplant is recommended for the first remission.

Port is being Removed..Hickman is Moving In

Friday

Lumbar puncture #10...done. Spinal headache...none! LP a success. The consult with the pulmonologist resulted in the possibility of reducing or changing the protocol for the transplant. He and the oncologist are going to discuss the risks and benefits of doing a more lung friendly transplant protocol. I'll probably hear more on Tuesday...I have Monday off!

Rest of the Week Appointments

Thursday was mainly lab and then IgG infusion. IgG is a part of the immune system that helps to fight viruses. I was low on it, so they decided to give me an infusion of it. It takes about 5-6 hours to get it infused. One of the reasons is because it is so expensive that they do not order it from the pharmacy until you get there. That takes about an hour. Plus you have to take premeds of Benedryl and Tylenol so that you don't get a reaction to IgG.

Friday started out with platelets, so that I could do a lumbar puncture in the afternoon. To get a lumbar punture your platelets have to be above 50. Mine have been hanging out around 25-35. I am starting to think that my bone marrow is damaged from the chemo and I do really need this transplant. I have not been getting any chemo and my platelets still are not coming back up. I also had a pulmonary consult, to make sure my lungs have truly recovered from the ARDS (acute respiratory distress syndrome) that had me intubated for 10 days and in the ICU for 3 weeks.

On a positive note...a guy that works down in the cafe at the SCCA that I have seen and chatted with throughout my treatment noticed that my hair is growing back in and that I wasn't wearing a hat. I told him that it was nice to have hair, but it would soon fall out again. He asked why and I told him that I was getting a transplant. He said in amazement, "you have to get a transplant after all that you've already had to do." I said, "yup." He told me that he knew that he could tell that I was a strong person from the beginning. He told me that he thought I never looked sick, I looked strong. It was nice hearing that from a stranger. From the outside looking in-I look like a strong person. It feels good that I look strong even when I feel weak. I can do this!

Pharmacy

The pharmicist wants to see all of the medications that I have. He's got his work cut out for him.