Nancy's Update

Beginning last night, I got to start drinking some wonderful barium solution in preparation for a CT scan today. I had to chill it, put an umbrella in it, and pretend it was some type of tropical drink in order to choke it down. This continued three, two, and one hour prior to my procedure. I guess the test went okay, I'll find out more next week.

The good news is that my blood counts actually held pretty steady from two days ago. Over the past few weeks, I've been requiring platelets and a two hour infusion of magnesium at my appointments at least every other day. The need for magnesium is in spite of the fact that, I'm already taking 12 magnesium pills per day. I've also required packed red cells at least once or twice per week. Today, I didn't require the magnesium or the packed red cells. My platelets were at 18 before they transfused me with one directed unit (LC62589). This past Sunday, I also received a directed unit of platelets (LC62524). I'm hoping that I can get my appointments back to twice per week instead of every other day. I would like to thank you all for continuing to donate platelets (A+ or O+) and whole blood (A+). The City of Hope is in a blood shortage situation so do know that anything that I'm unable to use will be given to someone else in need.

Thank you for your continued thoughts and prayers. I feel very lucky to be surrounded by such caring, wonderful, and supportive people. You must know that you've all contributed greatly to my recovery. Thank you again... with love, nancy

I'm sorry that I haven't blogged in a few days. I'm still home but require appointments every other day due to my low platelet problem. I'm still needing platelets at every appointment. Yesterday, my platelet count was at 6(000) - normal 150-450. This is the lowest my platelet count has ever gone. We shouldn't be making new records on the low side at this point... should be posting record highs. I think I'm 93 days post-transplant and was hoping by now to have great blood counts. The unit of platelets I received yesterday was from direct donor #LC62472 - Thank you.

The good news is that my last marrow biopsy showed no signs of the disease, MDS. I'm showing about 90% engraftment but it appears that I didn't get enough stem cells from the donor. We're still waiting it out, the new marrow just needs to become more robust. I'm trying to figure out what would "wake up" the new stem cells from Japan... (can't eat sushi for one year, don't like Natto - probably best to stay away from it anyway because it is fermented, how much tofu can one person eat?) California Roll sounds kind of good (is it even Japanese?) but I'm too lazy to make my own and I can't eat the store bought kind just yet. I should visit the nearby Japanese market for ideas. Maybe I'll pick up some Mochi (love it with Kinako/sugar.)

I'm just glad to be home. I never appreciated home so much! I want to thank you all for your continued support. The emails, phone calls, wonderful dinners, cards, and continued support through blood/platelet donations have been very uplifting. It may take a while for me to be able to bounce off the walls like before but I will get there. My mind wants to do it all at this point, but my body and doctors say "wait a little longer." So, I do what I can and count on others to pick up the slack. Love you all. Nancy

I finally came home from the hospital (stay #3) yesterday afternoon. Unfortunately, I spiked a fever of 101.3 again last night but couldn't bring myself to make that U-Turn back to the hospital. Mark offered to take me back, but I told him if I still had a fever in the morning, I'd have Scott, Mom, or Kurt take me since he had to work all day. Luckily, my fever hasn't gone beyond 99.3 all day.

During this past hospital stay, I needed platelet tranfusions five days in a row. For some reason, I can't keep any kind of platelet count. My doctor did another bone marrow biopsy on me yesterday before I left the hospital and has ordered a series of tests to find out if there could be another reason for my excessive need for platelets. I think during this stay all of the IV antibiotics they had me on, suppressed the marrow and caused my spleen to capture all my platelets. That's a very uneducated guess...

Anyways, thanks for keeping up with my blog. Some people think since I'm home, all is well. But, I think we all know better now. I still have a fragile immune system and the doctors are a little concerned about my low blood counts. (Course, it didn't help that I ran into things twice today, causing bruising on my legs.... oops)
I know I have to be extra careful.... love you all, nancy

Nancy says to be careful what you wish for. She previously said a City of Hope hospital room with a view of the mountains would have been nice. Well - she had a slight fever last evening (Thursday). Mark took her in and they decided to admit her. Nancy is bummed! Her doctors are running a few tests and she will likely stay over the weekend. By the way, she is still receiving red cells and platelets, so if you would like to donate, please contact the Donor Center. Remember, if she doesn't get your blood products, someone else in need will! Thanks for the continued thoughts and prayers, cards and letters, etc, etc.

Mom took me to my appointments today. We were there from 9 am to 3 pm. My white count was down again to 1.0 so my doctor gave me a shot of Neupogen in the stomach to try to boost it. (Oh, that was fun.) I also needed IV's of platelets (count down to 13,000), packed red cells and magnesium. I got the works today.

My doctor doesn't like that my counts are still so low. He said the easy fix would be to get stem cells from the donor. But, we can't do that since she is from Japan. In Japan, they only harvest marrow (no stem cells) and they do have a one time donation policy. Meaning, each donor can only give marrow once in their life. So, next week I have an ultrasound scheduled to see if my spleen is enlarged. I also will have a bone marrow biopsy. If my marrow looks good and if it appears that my spleen is capturing platelets, I may have to have my spleen removed. If not, we just have to wait it out. Hopefully my counts will rise on their own.

I finally sorted through some of my paperwork from the hospital. Andrew counted my direct donated units of blood/platelets. I received over 150 transfusions since my marrow transplant in May. All but a few of the units were direct donations from all of you. So thank you very much again for your precious elixir. I'm still needing transfusions of platelets about once or twice per week and red blood cells about once per week.

The main thing for me at this time is to stick to that low bacteria diet and be extra careful so I won't get sick. The last thing I want is to end up in the hospital. I've been home for two weeks now and am really enjoying it. Love, Nancy

I'm sorry I haven't blogged for a while. I'm still very much enjoying being at home. The first thing that struck me when I got home was the size of my TV. I was used to watching TV on a maybe 15" screen in the hospital for almost 70 days and on a 17 - 19" TV at the village which was mounted very high on the wall. The picture looked enormous at home. It was almost shocking! The reason why this is important to me is because in the hospital many people brought DVD's of the boys basketball games. My eyes are very bad still from the chemo so I had a difficult time identifying who was who on the screen. I can see every player on my TV at home.

This weekend was a little tough as Mark and the boys went to Las Vegas. The boys were in the Hollywood Dodgers Basketball Tournament. They had a blast and did well in the tournament. Scott's team took championship with game 2 going into overtime and winning game 3 by only two points. Andrew was on the opposing team for game 3. He thought he got the last shot off from past half court and made the basket to find out that his shot was one second too late! Exciting stuff.... wish I could have been there. But, as luck would have it (actually good planning), several people taped the game for me. I can't wait to watch the tapes. Thank you for being great videographers. Mom stayed with me during their absence.

On Saturday, I needed both blood products. I received a unit of platelets (LC61729) and a unit of packed red cells (not from a designated donor). I also received 2 grams of Magnesium. Thank you for your continued platelet and blood donations. Today, I received 4 grams of Magnesium but was not in need of any blood products just yet. My doctor's hoping that my new stem cells are making some red cells and platelets. I probably could have used another platelet transfusion today but he wants to see what I'll do on my own. (For those who follow my counts, my platelet count was at 23,000, normal is 150,000 - 350,000) My next appointment isn't until Thursday so it's quite a few days away. He said to call if I start bleeding from my gums or eyeballs (well, I added the eyeball part) and he'll have me come in for transfusions.

I'm still feeling really good. I feel fortunate that I've been home for 10 days now. I'm being real careful about wearing my mask when I need to and washing my hands frequently. I'm also being very good about the low bacteria diet and care for my hickman catheter. I'm trying not to get sick. My white count is so low today (1.4, normal 4.0 - 11) so I have to be extra careful. I'm hoping it'll go up at my next appointment.

I feel like I'm not as weak as when I first arrived home. Just moving around my house gives me exercise compared to my small hospital room or even the Village room. I can go up and down the stairs with ease carrying laundry or whatever. I like to take little walks around the block (mom won't let me when she's here) after the sun goes down. At any rate, yes, I can feel myself getting a little stronger everyday. I even gained three pounds since I got home (do you think the 1/2 gallon of chocolate chip ice cream every three days has anything to do with my weight gain????) I'm hoping some of the three pounds is muscle weight... wishful thinking.

Okay, that's it for now. Thank you so much for continuing to follow my blog. I appreciate all of your love and support. With love, nancy

I'm enjoying being at home. The novelty hasn't worn off yet. The hospital almost seems like a distant memory. The boys have been so good about helping out around the house. I'm not allowed to sort dirty laundry so Andrew continues to be the laundry man. Scott has been good about the dishes and Mark has been cooking me my low bacteria meals. I get fatigued real easily so they let me sleep when I'm tired.

Mark took me to my appointment today. We were at the City of Hope from 9:15 am until 2:15 pm. We start with labwork and have to wait for the blood counts to be processed. Then we saw my doctor who ordered a two hour infusion of magnesium. The anti-rejection drugs that I'm on really bring down the magnesium level in my body. I'm also taking heavy doses of magnesium orally.

Speaking of oral medications. I'm taking something like 27 pills per day. This is quite a task which requires that I keep a journal. Some medicatons can't be taken within two hours of other medications. The medications are taken one to three times per day. Without good record-keeping, I would be lost.

Thank you all for your continued well wishes. I appreciate all of your love and support. love, nancy

I finally made it home! Oh, it feels so good to be home with my family. There really is no place like home.

Mark and the boys did a great job getting the house ready for me. They've removed all the plants from the house and put them in the backyard, they purchased new air purifiers, put hepa filters on all the intakes in the house, cleaned the house, did all the laundry, and stocked the house with low bacteria foods for me. I can't have any live plants or flowers in the house due to the possibility of mold, mildew or fungus which can grow in the soil or water. Since my immune system is still very fragile, I can't risk any type of infection.

I need to be on the low bacteria diet for at least another month. Among other things, this means I cannot eat any food prepared at a restaurant, my food needs to be cooked here under specific guidelines. I cannot have bakery items that have sat on a shelf, all my meats have to be well-done and I can't have most fresh vegetables or fruits. The hospital even provided guidelines as to how to do the dishes and appropriately dry them.

So, even with all these rules, I am so so happy to be home. The boys and some friends made me some great welcome home signs. I'm just enjoying being around my family tonight. Seems like I have a lot to catch up on, but at the same time, I don't see how I was gone for 82 days! I think time stood still for part of the time and the rest of the time I spent fighting and recovering. What an ordeal. I'm not out of the woods yet, but getting stronger every day. I still need to visit the hospital three days a week for check-ups and possible transfusions of red cells and/or platelets. My appointments are Saturdays, Mondays, and Thursdays starting tomorrow through the end of August. August.... why is it August? I left on May 14th!!

I want to thank all of you who have traveled this journey to this point with me. It's like I was telling my uncle, you have all served as my inspiration. It has been tough but I don't really think about it... I look at the so many small improvements that I see in my health every day. I know they are small, but they are significant. Yes, I've had setbacks, but I always knew I can overcome them. And yes, there will probably be more setbacks, but I can overcome them as well. I've never been a very patient person, but have learned that healing takes time. To me, this is an investment in my future.. a future which will hold precious years with my friends and family, fun with my golf and gambling buddies, fantastic times at family reunions, etc. I look so forward to so many things and know that with everyday I'm a step closer to the things I love. I thank you all for your support which has been shown in so many ways. I'm happy, I'm home and I love you all. Nancy

I didn't need a blood or platelet transfusion today (had both yesterday,) so the visit to the clinic was under three hours long. Yeah!

Mom and I had a relaxing afternoon. I guess no news is good news. I'll sign out for now. love and miss you all, nancy

I received a unit of platelets today (LC61426). Thank you for continuing to donate your precious platelets. I'm still needing platelets atleast two or three times a week.

Yesterday, Mark and I went for a walk on the grounds again. We finally visited the Japanese Garden. It's quite serene and beautiful. They even have food that you can feed to the Koi and turtles. I've been visiting the City of Hope for four years now and never visited this garden. Today, we took a little longer walk around the grounds. It felt good to get out and stretch my legs.

We had another changing of the guards today. Mom came back this afternoon to relieve Mark. I hope to be out of here soon. There is light at the end of the tunnel.

love you all and miss you lots! love, nancy