Christmastime

Things have been going well, considering. I am continuing to recover. Feeling more strength everyday. If all goes as planned I will be done with my immunosuppressing drugs in January. This will let my new immune system run free! This will also let me be a little less careful on what I eat, where I go, ect. At the same time I still can not get immunizations for everything until 1 year post transplant. I am much more into the Christmas spirit this year. We actually put up lights, a tree, and decorated this year. Last year, I was in and out of the hospital and just wasn't in the mood. (Although we did have some awesome secret santas last year that decorated and made sure we had a great Christmas.) My blood counts have continued to get closer to normal. Next month I will have another bone marrow biopsy to make sure I still have no residual cancer. All is well over here in the Forslund family :)

Day +103 Blood Transfusion

What better time to update! I am getting a blood transfusion today, so there is not a lot to do for the next 5 hours.

I am now done with the transplant doctors at the Seattle Cancer Care Alliance. Today was my last appointment with them. Now, I am going back to the 4th floor at the SCCA. Back to my old oncologist. I no longer have anything implanted into my body for blood draws/transfusions. After a port, 2 Hickmans, and 2 PICC lines, it is nice to be done with all that. I now have to get poked in my arm for lab draws and an IV inserted for infusions.

Today, my hematocrit is 28 (26 on Monday). My neutraphils (I call 'em neuties for short) were .81. So, I had to get blood and a G-shot. The doctors are not too worried about the low counts. They say that around 30% of people still need this type of support at this point and I should not need them much longer. Getting blood when you are low is like an energy drink anyways. I feel great afterward.

I turned in the keys to my secret getaway in Seattle on Saturday. Travis, Loghan, and I headed up there on Saturday, packed up, and said goodbye. No more Pete Gross House. It has been great being back home.

Finally, an update! Day +65

Sorry, it has been a long time since my last update. Fortunately, there has not been anything too exciting to report. I got out of the hospital after 6 days and a new PICC line.

I was running a fever a couple of weeks ago, but it was during Seattle Cancer Care Alliance hours. So instead of going to the hospital I went to the SCCA's transplant triage. My fever was not very high, so I just had some cultures taken and a biopsy of my skin. (I developed a fleeting rash while I was there.) Turns out I have a mild case of GVHD (graft vs host disease). Since I have no symptoms, there is nothing needed to be done to treat it. I am also starting my tachrolimus taper. Tachrolimus is the anti-rejection/anti-GVHD drug. I will be tapering it until January, but at least it's a start. The side effect that bothers me most is hand tremors.

In a couple of weeks, I am starting my "exit" appointments. These are all the specialists that I saw before the transplant. They check to see how things have changed since the transplant. For example, the dentist will see if my mouth is dry after radiation. (yes, it is.) And the OB/GYN will check my hormone levels to see if I need hormone replacements.

I have also been home to visit Travis and Loghan in Puyallup a couple of times. As I get further out from transplant my appointments get less and less. My lovely sister-in-law is putting on a fundraiser in Puyallup tomorrow and I want to go, but have been advised against it. I am still at high risk for getting infections and can not get any of my immunizations for a year. (yes, I have to start over with shots again). Thanks for all your hard work Tara! I can't wait to see the pictures.

Back to the Hospital

Tuesday night I developed a fever of 101 degrees. You are supposed to head to the hospital with anything over 100.8. So, we headed over to UW (my Aunt Sue and I). I was hoping not to "check-in", but that did not happen. Shortly after getting there I developed shaking chills. Then my blood cultures from my central Hickman line came back positive for bacteria. I ended up being admitted and they pulled my Hickman line. I am now on antibiotics for 4 weeks and will be here until at least Monday when the Picc line nurse can put in a Picc line. I can't leave until I have a semi-permant access so that I can administer the IV antibiotics to myself. Heres to another week in the hospital ; )

Day +26

Over a quarter of the way to my day +100. (When I get to go back to my home and original oncologist-not transplant doctors) I have a lab draw today to see if my tachromlimus levels are okay. (This is my ant-rejection drug.) I also have an appointment with the cardiologist to see how my periocarditis is looking and if the Prednisone steroid is helping reduce the inflammation around my heart. Looks like I will not have any appointments this weekend, so I get the weekend off. Travis and Loghan are going to come up and visit tonight and then go on a cancer patient boat trip with me on Sunday around Lake Union.

Day +23

I am outta the hospital!!! I was discharged on Sunday (yesterday) about noon with 300 neutraphils. It has been just shy of a month in the hospital. Since I was still neutropenic, I had to administer IV antibiotics and fluids to myself via a mobile pump hidden in a backpack today. But, overnight my neutrophils are 800, so I am off antibiotics for now. And, I get to see my little Loghan tomorrow. Travis is going to bring him for a visit tomorrow after work. I am staying at the Pete Gross House in a studio-which is only for SCCA patients and a lot of them are transplant patients. Just FYI: the last time I lived in a studio was in college, I lived by myself, and it was bigger and cheaper than this studio. My Mom is staying with me as a caregiver.

Today was full of appointments. Still way better then the hospital. Lab draw (thanks Kelsie), office visit, nutritionist, chest x-ray, and some lunch at the Red Brick Bistro. I also ran into 2 people that I've met through Kelsie that were "incarcerated" at UW at the same time I was. One is on the exact same protocol and days that I am (he got out 2 days before I did). The other is getting geared up for a transplant, he is just waiting to find the best match out of the tons of preliminary matches he has. Both are doing good and look great.

Day +20

Today, I narrowly avoided the colonoscopy and GI stomach biopsy. They had it ordered because I had diarrhea and queasy stomach. But, Imodium stopped the diarrhea and I was able to eat all day yesterday without throwing up, so I am off the hook for now. They were going to test for acute graft versus host disease GVHD, but it looks like that is not the case, at least for right now. My Neutraphils are 190 today. The neutraphils need to be around 500 to get discharged. This is when you are not considered neutropenic anymore. So, it's looking like Sunday or Monday to get outta here.

Day +15

WBC's are up to 300 and Neutraphils to 40. Numbers coming on up : )

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.

Second Week of Appointments

Tuesday's appointment was at the University of Washington. I went to the oncology radiation department to meet the nurse and doctor. (I had no idea there was such thing as an oncology radiation specialist and that a physicist does the equation to make sure you are getting the right amount of total body irradiation.) They measured me in all kinds of spots, took chest x-rays of me in the machine, and went over all the risks and side effects from TBI. Some of the side effects are infertility, glaucoma, alopecia(hair loss), slight increased risk of skin cancer over regular populations, naseua, loss of appetite, dehydration, mucocitis, parotitis, diarrhea, and skin sensitivity. The machine that you sit in looks like a torture chamber, but the actual radiation is painless. I will be starting on July 10th and go in for 2 sessions a day for 3 days. I have to stay up near the U for the irradiation, so I will be staying at a hotel. After the 3 days in the hotel, I will be admitted to UW for the chemotherapy and transplant.

Wednesday's appointments were back at the Seattle Cancer Care Alliance. (SCCA) First, I needed to go to the lab to get a blood draw. Next, I had an appointment with my tan team nurse and physicians assistant. They took cultures to check for MRSA and Vanco-resistant cocci. Fun stuff. They also answered questions and let me know that my lumbar puncture (LP) and bone marrow biopsy both came back negative for lymphoma/leukemia. This is bittersweet. If it had been positive I would be gung-ho for a transplant. But, since it was negative, it makes me question the decision to go ahead with the transplant. They ran the biopsies through a very sensitive test and still it came back negative for any cancer. Then, I went to get another chest x-ray, so that they can make sure everything is clear in my lungs before transplant. My last appointment for the day was OB/GYN. Women, you know how that goes. But, in addition to the usual fun stuff, she went over the side effects from the OB/GYN perspective for the transplant. I will be post-menopausal after the transplant. So, I will have to take hormones. I also will be taking progesterone for the transplant so that I will not have a period, because they don't want too much blood to be lost.

Fridays Appointments

My first appointment today was with the Oral Health department at the SCCA. I was supposed to get a pano x-ray, but since I have had one in the last 2 years I can just have it forwarded to the SCCA. Then I filled out a dental history form and gave them my dental insurance information.

My second appointment for the day was with a transplant nurse. She explained my new medications and answered any questions that I had. She also went over my schedule for next week.

My third appointment was with the transplant Social Worker. She kind of asked the same questions the the phyciatrist asks. It felt like a therapy session.

My last appointment was a questionnaire on the computer. It is meant to help patients address issues that they are having, then the answers are printed out for your appointment so that all of your issues are addressed. They feel that people often forget to ask about their issues or don't feel comfortable asking about things. It asked everything from fatigue to pain to social activities.

I get Monday off from the SCCA.

Yesterday I got to retire 5 of my medications and today they gave me 3 new prescriptions. Figures: ) No more oral chemotherapy, so that my counts can come up. No more chemo until the high dose chemo for the transplant.

Transplant Appointments Have Started

The next day after my last post I got a call for my nurse up at the SCCA, Toni. She asked me to come in the next day for an appointment with Dr. Shustov. This is not a good sign! Usually appointments with him are booked weeks in advance. Well, it ended up that he wanted to tell me that the transplant board had discussed my case and the consensus is that I need a full transplant. This means 3 days of full body radiation and 3 days of heavy duty chemo, leaving me with no blood cells-completely wiping out the marrow. The 8th day is the "rescue" when they infuse the donated stem cells. Then it takes 7-20 days for the new immune system to start working.

On June 21 I had my last appointment with my oncologist Dr. Shustov for the next 100 days. He again let me know that the choice is up to me and that he is leaning slightly towards the stem cell transplant. I can stay on the maintenance therapy for 2 years and worry about the 65-75% chance that the leukemia will come back. If it does relapse it can be harder to get into remission and I will have to have a stem cell transplant at that time. If I have the stem cell transplant now I will decrease my chance of relapse to 20-45%. I have a fully matched donor at this time.

On June 22nd, I started my first day of appointments for the stem cell transplant. I started out in the lab where they drew tons of little viles for every test imaginable. Then I got a physical with the Physicians assistant. Next, I met with the nurse. She went over the schedule for the rest of the week, my medications list, and the schedule for the transplant. The plan is to start the full body radiation on July 10th, in patient chemotherapy on July 13th, and stem cell transplant on July 16th.

On June 23rd, I started with an meeting with the finance lady. I found out that if we did not have insurance that we would have to put 379,000 dollars down before starting the transplant. I hope everyone out there has insurance or gets it soon! Then it was off to get my EKG. My heart is beating fine. Next was my meeting with the transplant doctor and nurse. I brought Travis and my Aunt to soak up the information with me. He basically went over all the risks and side effects. Chances of treatment related mortality is 15-20%. The chances of GVHD (graft versus host disease) is up to 70%. This includes all GVHD from mild to severe and acute to chronic. Infertility and menopause if pretty much guaranteed. Some hard decisions lay ahead. I pray everyday for guidance.

Today started out with a blood draw and then a platelet infusion. My platelet number is 24 today and I need to be above 50 for a lumbar puncture which is scheduled for later in the day. Normal platelet numbers are 150-300. Luckily after the platelet infusion I was 52. Then I went for another pulmonary function test. I did much better this time. I was normal for my age group. The last pulmonary function test was a couple weeks after being intubated and I had just gotten off home oxygen the day before. Next, I was off to get my bone marrow biopsy and lumbar puncture/chemo injection. Lets just say my back is sore right now. I did get my Fentanyl lollipop and Ativan beforehand so I didn't mind the procedures much. The bone marrow biopsy is done on your back in one of the hip bones by a nurse. The LP is done on your spine by a physicians assistant. They also took a sample of bone.

Some new pics!

Discovering how much fun a birthday party with cake and a pinata can be.

Learning to fish with friends at Ohop lake.

Loghan brought Daddy his favorite toys and lovey so that Daddy could sleep with them. Loghan never sleeps without his lovey and always asks to bring his favorite toys to bed with him.

Here is the proof that I have been having some fun with my boys while waiting for this transplant to begin : )

Transplant Moving Along

I have my first transplant meeting on June 22 at the SCCA with my new team....The Transplant Team. Then the next 2 weeks will be spent getting all the work up necessary for the transplant, chest x-ray, CT and PET scans, bone marrow biopsy, Hickman (central line) placement, re-staging, echo cardiogram, lung function test, ect. I have to mention that I hated the Hickman and begged to have it taken out when my Dr. told me I wouldn't need a transplant. So much for that. It has 3 lines that hang straight out of your chest past your belly button. No swimming, and it has to be complely covered to shower and half the time it still gets wet. I am hoping that they can put it back where the scars are from the last one. I guess a port is not enough. On July 9th I start the chemotherapy and radiation for the transplant. On July 14th is the actual stem-cell transplant. I have to move up to Seattle on July 9th, where I will be living for the next 2-4 months. I am hoping for the 2 months : ) I have to have a caregiver for the the entire 2-4 months. I will hopefully only be in the hospital this time for a day. (As long as I still qualify for the mini-transplant) The rest is done outpatient. After the transplant, I go into the SCCA everyday for blood draws and fluids/transfusions as needed. The actual stem cell transplant is pretty uneventful, it's the blood counts coming back up and recovery from chemo and radiation that is the hardest. Getting an infection in the first couple of weeks before your body starts producing cells (esp. white blood cells) is dangerous. There is also the risk of GVHD (graft versus host disease). This can be acute or long term and presents is different ways. The new immune system from the donor can attack your own body. This can affect your GI tract, lungs, skin, stomach, ect. The new immune system also attacks the leukemia cells, because it recognizes them as bad-while my body doesn't. Oh and by the way... I have a 10/10 match for the transplant. All I know about the person is that they are from out of country, most likely a female, most likely from Germany or Italy, and the stem cells are coming from a reputable cancer center. They do not tell you anything else until 1 year post transplant if both parties agree. If this person doesn't pass the physical or decides not to go ahead with donation-I am out of luck because I do not have any other matches. Luckily, there is one person out there (on the registry) that matches me perfectly : ) I was told that only 30% of people that need transplants find matching donors, so I am feeling pretty lucky. I am still on 3 oral chemo drugs and one IV chemo drug, but I am feeling good and growing back some hair. I am almost to the point I might feel comfortable in public with no hat on. almost.

Transplant

I met with a pulmonary specialist last week to see if I have any permanent damage to my lungs. My lungs are improving every day. I do not need my home oxygen anymore. In fact, they came and picked up the oxygen today. Then I met with my doctor up at the Seattle Cancer Care Alliance. He decided that the best option for me would be a mini (non-ablative) stem cell transplant. The only catch is that I still need to be in remission. So I went in Tuesday for a bone marrow biopsy. Today, I found out that there is still no leukemia in my bone marrow. The next step is to meet with the Transplant team. I am also going to get out-patient maintenance chemo every week until the transplant so that I stay in remission. The SCCA is still looking for a good donor match for me. I have a couple of unusual markers, so all of the blood samples so far have only been a 8/10 match. Next Tuesday a promising donor is getting blood drawn for typing. He/she has at least one of the unusual markers-making them a 9/10 match. That is an acceptable match.

Most of you have already heard that I spent about 3 weeks in the hospital. I went into Good Sam with a fever. I spent about a week at Good Sam. They intubated me after I was having a hard time breathing due to so much crud in my lungs. I was still running a fever. They transfered me up to the UW after about a week. The fever ran its course and I woke up and was able to start breathing on my own. The next step is a transplant. The question is if I'll do a full transplant or a mini transplant. The SCCA is working on finding the perfect match for me. I have several matches-now they are collecting samples from potential donors to get the best match.

Some Fun Easter Pictures

The family and I were able to enjoy Easter together. Here is some of the highlights : )

I went in to UW for my 6th round of chemotherapy. I was there for 4 days. I did not feel the usual nausea and vomiting that I usually feel after chemo. Instead, I got bad mouth sores from the methatrexate. The only thing that really helps is liquid lidocaine swish, but even that does not last long. Two days after getting out of the hospital I had a blood check. I was trying to talk the nurse out of me needing a platelet transfusion and my nose started to bleed spontaneously while I was talking to her! Needless to say, she made me stay for a transfusion. Couple of days later I was in for a blood transfusion. And now today I am getting another platelet transfusion. All within one week. This is really a full time job.

As for the stem cell transplant, my brother and I have both been HLA typed. We'll find out in a couple of weeks if we are a match or not. I have an appointment with the SCCA Dr. on April 15th to find out if the decision is to finish out chemotherapy or do the transplant.

I've been wearing hats all winter, but full coverage hats are hard to find for the summer. I'm thinking about starting to wear my wig when I leave the house. It is starting to grow on me. At first I felt like a bank robber. But, the other day the woman behind the deli counter said she liked my haircut.

My bone marrow biopsy revealed that I have no leukemia. The problem is that my bone marrow is "too tired" to continue on the chemo regimen that was planned for me. My Dr. has decided to start me on the process of getting ready for a bone marrow transplant. This is what I was hoping to avoid since the beginning. It means having a caregiver 24 hours a day, getting an apartment up in Seattle, and lots of medical expenses. I have one last try at avoiding needing a bone marrow/stem cell transplant. The Dr. has switched a couple of my medications that may have immunosuppressive side effects. I will go in for my 6th round of chemo tomorrow. If I can get my counts back up in a timely matter I may be able avoid the transplant. I have been typed for the transplant. My brother, Nick, will be checked. He has a 1/4 chance of being a match. If not they will go to the National Database to look for an anonymous donor.

Since my last round of chemo I have been feeling really well. We even took a weekend trip to the Hood Canal. It was really nice to get away. The only problem had been my blood counts. They have not been coming up. Each round of chemo knocks the blood counts to nearly zero, but then as my bone marrow recovers it is supposed to bring my counts back up so that I can get the next round of chemo. I have had to have several blood and platelet transfusions to just keep me going. (Thanks again to all the donors out there : ) I had to go in for a bone marrow biopsy on Friday to see why my counts are not coming back up. The fear is that the cancer is back and messing with my bone marrow. The hope is that the bone marrow is just slow to recover because of the severity of the chemo. I'll find out the results sometime next week. I'll end this blog on a positive note and post some pics from our trip to the Hood Canal.

Back into the Hospital

I am back in the UW Medical Center. (But, this is a good thing because I am in for my 5th round of chemo.) For those that know chemo: Hyper-cvd. Only 3 more to go after this. Then 2 years of once a month maintenance chemo. I also got some good news from my CT scan- I am in REMISSION! I was supposed to start chemo on Friday, but my platelets had dipped down to 49. Platelets need to be 50+ to start chemo. So close! It was a good weekend though, because I got to watch the Superbowl. BTW I was rooting for the Saints because I saw a special with Drew Brees visiting kids with cancer. He gave a playoff game ball to a kid with leukemia who had just had a stem cell transplant.

Scary!

This Tuesday, I was at the SCCA to get my antibiotics from the last time that I was at the hospital. While I was in the infusion room, I started to get confused. I ended up getting transported to the UW via ambulance. I continued to get worse until I couldn't talk. Meanwhile, I remember everything everyone was saying to me. I just could not answer. I could only moan. The right side of my body was numb. They took me to a CT scan, MIR scan, and gave me a lumbar puncture. They thought that I might have had a stroke. I spent the night in ICU with Travis, my Mom, Jill, and Nick. Early in the morning, I needed to go potty-so I started talking. I don't know what happened to turn it back on. I was missing a few words, but now I'm pretty much back to normal. Wednesday I was transfered to the regular cancer unit. Thursday I got to go home.

That was a close call!

On January 1st, I was sent home from 4 days of chemo at the UW. This round of recovery felt a little different. I still felt nauseated but it didn't seem the same as before. On Thursday Jan 7, I went to SCCA for my usual follow-up to receive the "light" chemo doses. After I received the chemo, they took my temp prior to giving me platelets and it was 102. I was waiting for a hospital bed at the UW and while I waited my condition became a little more concerning. Eventually I was ambulanced from the SCCA to UW and admitted to the ICU. It was discovered that I aquired a blood infection, called sepsis, and they pumped me full of fluids and antibiotics. Today, Jan 12, I am still at the UW. I am no longer in the ICU but they are holding me until my breathing improves. I will get a chest CT today to make sure I'm not developing pneumonia or something in my lungs. I'm feeling much better compared to a few days ago. No more nausea. I still have a bit of a cough but they are giving me some good cough medicine to control it.