1rst Year Follow-up Results

The most important news: NO CANCER! But, as a result of my new immune system not completely accepting its new host, I have Graft Vs. Host Disease. This is fairly common with everyone that has a donor-even perfectly matched donors like mine. This is treated with immunosuppressing drugs. And since the perfect combo of drugs to combat GVHD has not been found...I signed up to be part of a study. I was randomly assigned a 2 drug combination: Prednisone and Sirolimus. Unfortunately, both these drugs have lots of side effects. So, while taking these medications, I also have to take a cholesterol lowering, lipid lowering drug, pneumonia preventing drug, and a virus preventing drug. My pharmacy is loving me again!

June Update

As I had mentioned last update, I do not have any diagnosed GVHD. But, I do have suspected GVHD. Because of this suspicion I am headed up to the SCCA next week to do my 1 year post-transplant round of appointments. My main symptom of GVHD is tightness in my muscles. For example, it is sore and uncomfortable to sit cross-legged right now. I've been noticing it for awhile and feel like it is getting worse. I talked with the nurse at the SCCA and they felt it is time to come into the SCCA for an evaluation. Muscle fascitis is most often irreversible. Since my 1 year appointments were only a couple weeks away anyways, they moved up the appointments. This is my schedule for next week.....

Monday: fasting blood draw, consult with MD, sedation, and bone marrow biopsy
Tuesday: eye doctor, dentist, pulmonary function test, nutritional consult
Wednesday: DEXA scan, PET scan, gyno exam, physical therapy evaluation
Thursday: conclusion conference

Here's to continued remission and no hiding cancer.

Hope all goes well.

Oh, and the odds are on my side after 1 year. The mortality rates go way down after the 1 year mark.

The next thing on my agenda is writing a letter to my donor. It has to be anonymous, because she is from Europe and over there the rules are that you can only reveal personal information after 2 years. I cannot say anything that would reveal where I am from or anything that could identify myself. I really don't know what to say. What do you say to someone that donated something so personal? My blood type has now changed to her blood type. I now have her blood DNA. Weird....I know.

May Update

     So, it has been a long time since the last update. It is time for some new information. I hate it when I find cancer blogs on the web with no updates because I always wonder what has happened to them.

     In general, I am doing pretty well. I am currently seeing the oncologist once a week. For awhile, I was going every 2-3 weeks. That ended when I got pneumonia and wasn't getting better. Now I am back to weekly. Usually these visits consist of a blood draw, wait for results, and go over blood counts. I still do a Neupogen (G-shot) once a week to keep my white blood cell counts above 4. This is so I can fight off infections. My hematocrit is back to normal. My platelets still are hovering around 60-70. (Normal is 150-400) I am under testing to see if I am making an antibody that attacks platelets. If that is not the reason they are still low, I will probably need a bone marrow biopsy to see what is going on in the marrow.

     I am down to two prescribed medications and a complete drawer full of medications that I need to take in to one of those medication recycling programs. One is acyclovir. This is to prevent getting the chicken pox virus. I am not longer immune to any of the childhood immunized illnesses. I get to start over again on immunizations in July. The other medication is hormone replacements due to chemo and radiation. I also take a handful of vitamins and other over the counter supplements.

    I have no diagnosed GVHD (graft vs.host disease). This is a major complication from a stem cell transplant. It is where your new donated stem cells attack your body because it does not recognize it as its own. Complications can range from minor (like red skin) to major (like organs shutting down resulting in death). Since a majority of stem cell recipients from donors get GVHD, I am always thinking I have it. Every little bump, weird feeling, and sore muscle starts me thinking....what if it's GVHD? I am sure the longer I am cancer free, the better it will get.

     In July it will be my 1rst birthday! I will be back up in Seattle at the SCCA for 1 week to do all my 1 year check-up appointments. I get to see how well my body has recovered from all the toxic battering it has endured. They check everything including your mouth, lungs, heart, bone marrow, ect. And I will start my immunizations.

    Some may be wondering what the long term affects of all the chemo and radiation are. The thing that I notice the most is the numbness in my feet. I have seen a podiatrist and there is really nothing to treat it. I will likely always have numbness in my feet. Also, I don't grow armpit hair. (I know, bummer, huh?) I don't know if this will last forever or not. I have a new allergy to egg. I am gradually getting my energy back. I've read that the #1 complaint from transplant patients at 1 year is fatigue, so I guess I am right on track.

     Meanwhile, life has gone on at the Forslund household. My hair is growing out into a nice pixie cut for summer. We have a new puppy named Eldy. (LD for loghans dog) For those that know the transplant rules, I know I am not supposed to have a puppy until 1 year post transplant. But, some rules are meant to be broken, right? Plus, I am almost there! We are planning lots of camping trips for the summer to make up for last year. Loghan is in soccer and loves superheroes. Life is good.

The family at Relay for Life in Auburn.

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.