Nancy's Update

Things are pretty much status quo. Mark and I spent hours in the clinic today. My doctor finally came back from vacation today and got the update. I was in the hospital the whole time he was in Japan. I told him not to ever go on vacation again!

My counts are okay. It's just a waiting game. When I no longer need daily appointments then I'll be able to go home. I'm hoping this is sooner than later!

Love and Miss you all. Nance

Mom finally got to go home today. Mark is my caretaker for the next several days. He's doing a good job. He cooked me Udon for lunch and Filet Mignon, garlic spinach and rice for dinner. yummm... He also took me for a walk on the grounds here at the City of Hope. The rose garden is quite beautiful and relaxing. I can't have any exposure to the sun because it causes more GVHD (Graft vs. Host Disease - rejection.) So, when I venture outside I really have to cover up.

I'm feeling pretty well right now. We went to the clinic today where I received the "usual" - antifungal and magnesium via IV. I may need blood/platelet transfusions tomorrow in additional to the "usual", we'll see.

I don't know how I'll ever thank you all for your support. The Cypress High School Basketball team continues to bring dinners to my bachelors. The OCO group also has brought numerous meals for them. So many of you have donated platelets/blood to sustain me and some were donors whom I've never met. They donated based on my friends/family having them come forward. Many of you have taken care of my boys by driving them places, feeding them (feeding Andrew is no small task), and letting them hang out with you. I have received hundreds of get well cards, some from people I don't even know. I've received cards from bible study groups and women's groups. I thank all of you for your well wishes. Everyday, I feel I am getting stronger. I know that I'm better because of your prayers and continued support. So, thank you from the bottom of my heart to all those who have done so much to help in my recovery. Love you all. I'll be home soon.. love, nancy

Today, Mom and I spent five hours in the clinic getting my IV antifungals and magnesium. Apparently, I need so much magnesium because the anti-rejection drugs deplete it from my system. We're slowly getting the number of hours in clinic down. Mom will finally get a break as Mark will take over for a few days starting tomorrow morning.

That's it for now. I thank you all again for your prayers and support. love, nancy

Nothing much new to report. I received a unit of platelets today from my brother, Warren. Mom and I were in the clinic for almost eight hours today. Besides my transfusion of platelets, I received magnesium by I V and also an IV drip of an antifungal medication. (sounds gross, huh?) That was given for preventative measures. Then we waited for the doctor to show up.

I got to see Lynny today. She visited us at the Village after her appointment at the donor center. Thank you for being so supportive Lynny. You Rock Baby!

Tomorrow will be more of the same. I hope to not spend quite so much time in the clinic tomorrow. That's it for now. Love, nancy

Well, I made it out of the hospital again. Hopefully, for more than four days! We are still in the same Village unit as before and find it's fairly comfortable. The kitchen is not too well equipped, but we bring in whatever we need.

I received a unit of platelets before leaving the hospital today (LC61023). Thank you for your continued support. I will continue daily appointments at the City of Hope. When my counts get better and I no longer need to be seen daily, then I'll get to go home! Several things need to happen in order for me to be released to my home. I'm confident that these things will happen in time.

For the time being, it's nice to be at the Village. I no longer am toting my IV tree and that in itself is liberating. It's the small things that bring about joy.

Thank you all for continuing to follow my progress by reading my blog. Love and miss you all. Nancy

Today I received a unit of platelets (LC61023) and a unit of packed red cells (LC61065). Thank you once again for your precious blood/platelet donations.

Seems my symptoms have stabilized. I think I'm going to venture out to the Village tomorrow. It's kind of scary because here I feel safe with all the nurses and doctors around all day long. I don't want to land back in this hospital, but if I have to then there is no choice.

Thanks to all of you for your support. I hope to be home sometime soon.
love, nancy

Nothing much new to report today. Last Saturday I received a unit of platelets from Scott. To date, I haven't needed another platelet transfusion. The HLA typed platelets seem to last longer, but as my doctor said today, we should save his for when I really need it. He doesn't want me to build up immunity to Scott's platelets. Although, I do not fully understand how all this works, I really appreciate all of you who have donated platelets to me. Warren was here this weekend and donated platelets today without incident. I will still use your precious units and want to thank you for your continued support.

The doctor turned off the ocntinuous morphine this morning, but I can still push the button if I need a boost of painkiller. Even though they have cranked down the continuous morphine to the lowest level before turning it off, I think I got a little headache today from the withdrawal. If I can stay off the morphine pump and can control the pain using other medications, maybe I can be released to the Village soon.

I've been at the City of Hope (hospital and Village) for a total of 71 days now, but who's counting. I'm 60 days post-transplant now. My blood counts are slowly improving. As my doctors indicated, the counts will bounce around for a while before they stablize. The platelets are the last thing to respond to the transplant. I'm confident that my counts will be normal at some time, I just have to be patient.

Thank you all for your love, prayers and support. love, nancy

Well, I'm still in the hospital. I feel so much better now. They gave me a new drug to help with my pain and I feel like a new person. It'll be just a matter of time before I'm well enough to be discharged. I'm still on a high dose of steroids to help with the GVHD (rejection) so my appetite is a bit out of control. I'm even eating the hospital food. Yikes!

I hear it has been terribly hot outside! I can't tell from inside my hospital room. It's always a constant 75 degrees in here.

I had a lot of potential blood/platelet donors show up yesterday (Saturday) who were unable to donate. If you have given platelets in the recent past, they need a doctor to sign off that you are eligible to donate again. On Saturdays, there is no doctor available to approve another donation. So, please ask when you make your appointments if you are eligible to give based on your donation history. If you are not eligible, do not make your appointments on Saturdays. There is a doctor in house Monday through Friday who'll approve additional blood/platelet donations.

Thank you for your support. I miss you all. love, nancy

Nothing much new to blog today. I've been in this hospital room now for 13 days. Originally, I thought it would only be a couple of days stay. I'm not going to be discharged this time until I feel well. My total time at City of Hope is now something like 67 days. Whew...

I want to continue to thank alll of you for your donation of blood products and also for helping my family at home. Many meals have been delivered. What a blessing this has been. Also, special thanks to my neighbors Frank and Joyce for taking on the challenge of teaching Andrew to drive. I really appreciate this effort and feel confident that he'll learn to drive well. Andrew has had his driver's permit since mid January and these behind the wheel hours will help in attaining his 50 hours on the road.

Thank you all again for your support. love, nancy

I received platelets this morning. (LC60635) Thank you for your continuous gift of life!

Today, I had a rather rough day. I have the ability to up the morphine by the push of a button, when feel I need it, but today I may have overdone it. Between the Benedryl and morphine, I went very loopy this afternoon (yes, more so than usual).

My doctor's are trying to get a handle on the GVH - Skin, by way of steroids. I never used so much steroids before in my life. I wonder if this is playing a role in my loopiness today.

That's it for now. Still in hospital until I feel better! love nance

I've been a bad blogger. Sorry everybody, but I've not felt well enough to post daily. I have a lot of skin GVHD (Graft vs. Host Disease) or rejection. I've been very uncomfortable as it causes severe hives-like itching everywhere. On top of that, it seems that the chemo has damaged the lining of my bladder. I won't get into what effect that has on me. As a result of these setbacks, the doctors have me on morphine and benedryl 24/7. It's hard for me to feel alert enough to blog. So, if this posting seems scrambled it's due to the medications (although, you may not notice any difference from my other postings... ha ha)

I'm still receiving many transfusions and I really thank you all for your continued support. Over the past several days, I received three units of platelets (LC60305 and LC60614 x 2). I also received a unit of red packed cells LC60606. Scott is a perfect HLA match for platelets for me and he came up here today to donate. One of his veins blew up on him, so half the platelets were from one arm and half from the other. Thank you Scott. You Rock Baby!

This is day 10 being back in the hospital. I didn't think I'd be here for this length of time. I'm not leaving until I feel well! I'm way too uncomfortable right now to think of going back to the Village.

That's it in a nutshell. Thanks for keeping up with my blog. love, nancy

I received one unit of platelets (LC60218) and one unit of packed red cells a few days ago (LC59574). I received two other units of packed red cells but the donor numbers were unavailable.

I'm still in the hospital, Day 6, round 2. I'm feeling a little better and my fever has broken. I now have GVH (Graft vs. Host) rejection factors that I'm dealing with. Isn't this fun? When I'm not feeling yucky (professional medical terminology), I'll try to keep up with emails and my blog better. I hope to be out of this hospital soon and will probably go back to the village.

I've been here in Duarte for a total of 60 days now. whew! I can't believe that I've spent two months away from my family and friends. I never dreamed I'd be gone this long. But, when I do get back, I'll be a little stronger. It's just taking some time, that's all. Miss you all. love, nancy

I've had a few setbacks this week. I finally got reconnected with my computer. I had to give in to the fact that I'm going to be in the hospital longer than I had hoped. I'm feeling a little like a lemon car at this point.. one thing after another... no returns.

My boys brought me an 8 x 14" photo today of the kids who went to the Arroyo Grande Tournament. They are holding a wonderful sign which says "We Miss you Auntie Nancy!"
It's hanging in my room and gives me something to look forward to next year when I join them in A.G. and of course, Las Vegas.

I've missed Andrew's whole summer basketball Varsity league play. Luckily, he'll play again with the Varsity team in the second semester and I hope to make every game. After that, he'll have another year as a senior.

I miss my family and home immensely. I miss all of you. love, nancy

Nancy has been running a slight fever since leaving the hospital on July 4. Today it spiked over 102, so she has returned to the hospital for a short stay. IV antibiotics should cure this infection and allow her back to the Village soon.

Nancy received one unit of platelets today. Her white cell count continues to increase. She has not needed red cells for five days! We are encouraged by this positive trend in blood counts.

Thanks for the continued positive thoughts and prayers.

Mom is finally getting a break. Cathy came in to be my caregiver for the next several days. She took the Low Bacteria Diet class and knows just what to do. She will make me behave... oh yeah, I'm such a Rebel.... Mom is exhausted. She visited me while in the hospital all 50 days, except for one. It's quite a drive for her and she mostly made the trek by herself. Plus, since she won't let her gas tank go below half, she probably filled up two or three times per week. Not bad for someone turning 78 in four days.

Cathy and I will visit the hospital every morning sometimes not returning until early afternoon. She has to be with me 24/7. Thank you Cathy.

I didn't need a platelet transfusion today! yeah. My white count is at 2.4. Hopefully, my stem cells will begin making platelets soon. love nancy

The first night in the "Village" was not very restful. Since there are homes just on the other side of the parking lot, the fireworks went on until midnight. Too bad we couldn't see them from our unit.

I received two units of platelets over the last two days (LC59641 & LC 59662). If you could email me if you are the donor of LC59662, that would be great. Your donation caused a huge rise in my platelet count.

Mom and I spent the entire morning and early afternoon in the clinic getting transfusions and medicine by IV. It was a long day and rather exhausting. I had rice from a rice pot tonight for the first time in about two months. It tasted so good. My roommate (mom) is doing a great job. She's cooking my Low bacteria meals for me and keeping up with the place. Taking my meds on time is rather challenging since I have so many prescriptions. Luckily, the discharge nurse gave us a schedule to write the meds and times taken.

That's about it for now. I'm rather fatigued today, so i'm going to turn in early.
love, nance

After 50 days, I was discharged from the City of Hope Today! Since I still need daily transfusions, I'm staying in the "Village" on the City of Hope property. It's like a studio apartment with accomodations for patient and caregiver.

What a ride this has been. I was admitted on Mother's Day and released on 4th of July. I still have daily appointments, but I'm no longer connected to the IV tree. This alone was very liberating. I'm still on a low bacteria diet for another two months. I have to wear a mask and gloves anytime I'm outside of my room at the Village. This will continue even when I go home. I hope my new stem cells will start to make enough platelets to support me. Once I can get my platelet transfusions down to twice per week, I can go home and just come in twice per week for my appointments.

My mom is stepping in as my caregiver. It's a big responsibility. She has to cook everything a certain way for the low bacteria diet, she has to wash dishes a certain way and can't dry them. Instructions are to let dishes air dry in rack. Many foods need to be avoided. At some point, somebody will have to spell her so she can go home, do our laundry and get some of her own things done. Kurt, Cathy, or Mark will be able to relieve her probably on the weekend.

Thank you for your support over the last few months. I feel that I came through the transplant fairly well. I still have to be very careful as my immune system will be fragile for months. I still can get Graft vs. Host Disease (rejection), but I'm hoping if I do get it, it'll be mild and we'll be able to control it with medications. I feel optimistic for the future and have no reason to believe there will be any other outcome. Thank you all for your love and support. love, nance

Sorry I didn't post to my blog yesterday. Over the past two days I received two units of platelets (LC59653 & LC59562) and one unit of packed red cells (number unavailable).

They didn't move me to the Village today because of an allergic reaction I had two nights ago. They wanted to watch me one more day. I'm not sure what caused the reaction but my body was covered in hives, my lips swelled up (Mark said I didn't need Botox), and my tongue was also swollen. My blood pressure dropped to something like 71 over 40, my heart rate was 150 and my blood oxygen level dropped to 86. They called in the ICU doctor and administered 50 mg. benedryl and Hydrocortizone. It took a while, but everything normalized in a few hours. I was hyperventilating much of that time and felt my throat was closing up, too. It was very scary. Scott and Mark were here the entire time.

I will probably be moved to the Village tomorrow, July 4th. Gives new meaning to "Independence Day!" I'll continue to post to my blog from there. Thank you for all your support! love, nance

My doctor is still planning on moving me to the Village this coming Monday (this could change depending on availability, any new conditions that may pop up, etc.) Does that mean I'll be part of the "Village People?" Seems I dressed up as one of the Village People a few years ago at Halloween with the gals at OCO.

My white cells dropped to 1000 today so they are boosting it with Neupogen again. I wish they'd just let it be so I can see what my new stem cells will do on their own. The good news is I haven't needed a transfusion, neither platelet or red cells, since Thursday night. Seems the stem cells are starting to make red blood cells and maybe a few platelets. Yeah : )

This marrow transplant has been one of the most challenging things I've ever done. I feel fortunate that I came through it pretty well. There are a lot of very sick transplant patients here. A few weeks back I heard a man yelling at night, and before that somebody "coded." That was scary because these sirens went off and people were running in the halls. He was taken to ICU on another floor.

There were many side effects which I never got! Many patients get terrible mouth sores and sores in the throat. It precludes them from eating and talking. Course, it would be difficult to shut me up. I feel so lucky to be in this good of shape post transplant. I know a lot of it is because of all of you supporting me. I can't tell you how many transfusions I had in this hospital, most were direct donations from all of you. You've kept me strong and positive and I thank you for all your thoughts and prayers. I have a huge assortment of the best get well cards ever! These will all go in my scrapbook. Then there is all the wonderful people who delivered dinners to my family. What a fantastic gesture this was. Also, a lot of people drove Andrew to and from basketball games, tournaments, etc. I can't begin to thank all of you for all you've done.

Even though I still have a long road ahead, seems like some of the toughest times are behind me (I hope.) I have to be on a low bacteria diet for 100 days post-transplant. I have to wear this super thick mask and gloves everywhere. My immune system will be fragile for a long time so I need to be very careful not to get exposed to anything unnecessarily. There is still the whole Graft vs. Host Disease (Rejection) which can manifest itself at any time. They say the fatigue will hit at weird times so just take it easy so I can rest. I need to follow the rules for another 60 days, so please understand if I'm not up to visitors when I go home.

Thank you for everything. I feel so blessed to be surrounded by so many wonderful and caring people. Love, nance