Nancy's Update

Today I received two units of platelets(#LC58158 & LC58166) and one unit of packed red cells (LC57917). This is the most transfusions I've ever received in a single day.

I finally figured out why I can't sleep between the hours of 12 midnight and 3 a.m. I lie there freezing cold, shivering, and requesting more blankets. Another post-transplant patient told me about his uncontrollable shivering and said his was due to a reaction to one of the anti-biotics. Thank you Tony! That was my problem, too. We remedied that by using painkillers right after the infusion of the anti-biotic. No more uncontrollable shaking! : )

Not much more to report here. It's just a waiting game for the next few weeks. We're just keeping the side-effects in check with medications. I'm on three different anti-biotics, an anti-viral, and an anti-fungal. Since I still have no immunity these medications are suppose to help stave off any infections/complications.

Thank you for your continued thoughts and prayers. I received a whole bunch of greeting cards today. Thank you all so much. This helps me right now as I still can't leave my room. It could be another two full weeks before I can step into the hallway. The greeting cards and email help me feel connected to the outside world.
love you all, nancy

I woke up this morning to the nurses hanging yet another unit of platelets. I found out it was donated by my cousin, Barb O'Donnell. Thanks Barb. I also woke up to find that my pillow was completely covered in hair. I couldn't stand it anymore because the hair was EVERYWHERE! I had the nurses shave my head this morning (thanks for offering to do this JoAnn.) I knew this would happen eventually, but I was just a little traumatized by the whole thing anyway. My friend, Janice Wong, who is seven months post-bone marrow transplant had great timing and brought me a cute pink hat today. Thank you Janice!

I think it may take me some time to get used to this new look. I'm not real crazy about the shape of my head but I really can't do much about that. Thank goodness for hats and scarves! My brother Kurt donated platelets again today and stopped by to see me. His comment was that my ears looked white and big. Spoken like a true sibling. Course, I commented back that my hair will grow back in.... his hairloss is permanent! My only dilemma today was whether to use soap or shampoo on my head.

I began to eat better over the last two days. I have overcome most of the nausea and nurses are shocked that I'm eating food already. The only problem with this is that they are feeding me through my IV. All of my nutrients, amino acids, vitamins, and calories are being infused 24/7. So if I'm eating in addition to this bag of IV food, I have potential to gain a lot of weight.

Other than that, I'm just waiting for the new stem cells to start making healthy blood products for me. My doctor said my stem cells may have jet lag since they are from Japan. I'm more worried about liking things like Natto after I'm well. Sometimes the recipient will take on certain likes or dislikes of their donor. Since my donor is 23, yes, half my age, who knows what'll happen. Watch out Mark!

I received a platelet transfusion this morning at 5 am for what seems like the fourth day in a row. Not much else happened today. It's just a waiting game from here on out. The doctor stopped by and said I can expect to see some increase in blood counts at about two weeks post transplant. It takes bone marrow a little longer to show improvement than it does stem cells. The good news is there is suppose to be fewer host vs. graft disease (rejection) with a bone marrow transplant versus a stem cell transplant.

My hair loss is accelerating. My nurses say when I'm ready they'll just give me buzz so I'll have stubble on my pillow instead of long hair. I'm not quite ready for a buzz yet.

This was the final day in the Tiger tournament. Andrew's team took Championship and Scott's team lost by 2 in overtime (83-81). I know I missed some great games this weekend but I'll be back in full force for future tournaments.

It finally happened. I began losing hair today. Luckily, mom had the foresight to buy me scarves and caps over the last several weeks prior to hospitalization. I guess I'm ready for the hair loss but deep down inside, I hoped to be one of the small percentage of those lucky enough to not lose their hair.

I received another unit of platelets this morning (#LC58087) because my platelet count was 14. My white cells are still non-existent. My low platelet count has caused some bleeding on my gums. Other than these things plus some side-effects of the chemo and the massive doses of anti-biotics, My doctor says I'm doing better than average.

Scott and Andrew's basketball teams won their games today in the Tiger Tournament. Tomorrow, Andrew's team is playing for championship and Scott's team is playing for consolation. Go get em boys!

Today, just like yesterday, the nurses woke me up at 5 am to give me double dose platelet transfusions(#LC58023.) My platelets were at 14 this morning before the transfusion. I have virtually zero immunity right now. My white count this morning was under .2 because they can't read any lower than that. It's kind of scary to have no immunity if you think about it. I really have to be careful right now and limit exposure and maintain all the oral preventative rinses and medications so that I reduce the chance of any infection.

Warren showed up at the hospital and surprised me. He, Dawn, and the boys came down for the long weekend. Scott gave Andrew a haircut last night and Andrew ended up with a very short haircut with an "A" etched in the back of his head. Andrew came to the hospital today with his new do which, actually looked okay. This weekend both my boys are involved in the Tiger Basketball tournament. Scott's team lost their first game but Andrew's team won with Andrew scoring something like 22 points (must be the new haircut.) I hear I missed a good game.

Today, I was a little more fatigued than yesterday. I am still dealing with side-effects from the Chemo and the new anti-rejection drugs. I guess these symptoms are suppose to continue for weeks. I want to thank you all for continuing to give platelets and whole blood products. Your units are a precious "gift of life."
love, nance

After seeing yesterday's photos of my IV tree, my friend emailed and said I bring new meaning to the term "bag lady." Yesterday was my big day. I now have an additional birthday to celebrate each year. So don't forget presents twice a year folks! just kidding...

Today was more anti-rejection drugs and confinement to my room. I had my physical therapy and occupational therapy sessions in my room. The new stem cells should start producing a noticable amount of healthy blood cells in a few weeks at which time my white cells should go up and I'll be able to leave my room.

Thank you all for being on this wild ride with me. I can't tell you what a difference you've all made for me. You've kept me cheerful and positive and forever grateful to be surrounded by such wonderful family and friends. Love you all, Nance

The bone marrow arrived at City of Hope this afternoon. Nancy received about 1000 ml in five bags today (small dark bag with the blue label on the left). The stem cells in the marrow should seek out the cavities in the bone, engraft, and begin producing blood cells. We look forward to seeing increases in white cells and platelets in the weeks to come. Note the tree with all the bags connected to Nancy. Yikes!

Nancy will still require packed red cells and platelets until the new marrow cells are producing sufficient quantities. Thanks to all who have been donating!



Here's Nancy and Mom (hiding behind the mask). Mom continues to visit Nancy nearly everyday. She has been at all the appointments for the past four years. Thanks Mom!

Thank you for the continued cards, letters, and emails! They are all very encouraging!

I just finished watching the final showdown of American Idol. What a great program it was tonight! I'm glad Taylor Hicks won! SOUL PATROL! After the program I went to sleep but started thinking that I never updated my blog today.

Since I haven't been eating, they hung this bag of nutrition which gets infused into my Hickman Catheter with everything else. It looks like this huge bag of pee. They also hung a bag that looks like milk. They said I was to start getting lipids which are fats. I told the nurse to give it to somebody else and she just laughed. I received a unit of platelets (#LC58010) as my count this morning was at 18. My white cells are at .45 so I am officially confined to my room. The occupational therapist and physical therapist came to my room and had me do exercises individually.

Tomorrow is the big day. The marrow is suppose to come in at the airport (I'm assuming LAX) at 2:30 pm. The marrow goes straight to City of Hope's blood center where they reconfirm the typing and do some other things to it. I don't know what time they'll actually infuse the donor's marrow, but it'll probably be in the late evening hours.

I'll update again tomorrow. Thanks for keeping up with me.. love, nance

I felt a little better today. The trick is keeping the anti-nausea medications going 24/7. I'm hardly eating anything because nothing tastes good plus it usually makes a U-turn. Certain smells are really beginning to bother me. The good news is I haven't lost any of my hair yet.

I'm watching the finals on American Idol in my room on my 17" TV, I miss my big screen at home. I'm rooting for the Soul Patrol, Taylor Hicks. I think he is refreshingly different.

I took some different pain killers today for a mean headache. They didn't stay down. They were considering using Demerol or Morphine, the painkillers that I had last weekend when I was on the strong Chemo. We finally got the charge nurse to call my doctor and put Imitrex on the list for my migraines.

They gave me some ativan for the nausea just now so I'm getting sleepy. Thanks for keeping up with my stay here. love, nancy

Hi gang. Well, my basketball teams did not make it any further. I was hoping the Clippers and Spurs would make if to the finals.

I'm finally feeling well enough to update my blog. Boy this past weekend was a tough one. I was so nauseated the entire weekend. The anti-nausea meds did not work that well for me. The nurses started at 5 am this morning with a transfusion of platelets. At that time, my platelet reading was 20 (normal is 150 - 450). After that unit, they checked again and my platelets decreased to 18 so they gave me another one. In the afternoon, they gave me unit of packed red cells. I can kind of tell who donated the units directly to me based on the LC# on the units. Thank you for donating units to me if you would like to know if I received your unit of blood, I received #LC57941 and #LC57921. There should be some numbers on the paperwork that you received when you donated. The second unit of platelets did not come from a designated donor.

Thank you for your generous donations of your elixir of life. I'll probably need many more transfusions until the new marrow stem cells, which I'll received on Thursday, can begin to make enough to sustain me. So me being transfusion dependent at this point is completely normal.

I'm going to turn in now as I'm feeling pretty tired. love you all, Nance

As expected, Cytoxan has been rough on Nancy. She has been receiving multiple meds for nausea and has been sleeping alot. She needs much rest as day one (transplant day) quickly approaches (Thursday).

Please use email as the primary method of communication - she will reply when she feels up to it.

Please do not call her cell phone or room phone. She is likely trying to sleep or receiving the attention of the wonderful medical staff. She will return calls when she is able.

She needs A+ blood and A+ platelets. If you would like to help, please contact the City of Hope Donor Center at 626-471-7171 and make an appointment for a directed donation to Nancy. Blood donation takes about 30 minutes and platelets take about two hours.

Thanks for the loving support extended to Nancy. We look forward to the transplant and subsequent engraftment.

We had been warned about a chemo agent called Cytoxan by comments like "if they offer you pain, diarrea, and nausea meds TAKE ALL YOU CAN!!!" Today is cytoxan day one. I hate to complain, but they were right. On the bright side Mom and Andrew came by this morning. Scott is at home not wanting to expose me to his cough. Last night San Antonio won. Hope they play the Clippers in the finals. And THANK YOU ALL for your prayer and well wishes. They are very precious to me.

Yeah, Clippers won last night over the Suns to force a game 7 in the playoffs.

I can't believe that I've already been here for six days. I can't believe I've already tolerated 5 days of Chemotherapy. I feel fortunate that the side effects have been minimal. I've been told that the tough stuff will begin tomorrow when they start me on a different Chemo drug which I'll stay on through Sunday. Then on Monday and Tuesday, I'll be on two anti-rejection drugs and finally the bone marrow transplant will take place on Thursday, May 25th.

Today, I was feeling a little more nausea, so they started giving me another anti-nausea medication. I really hate being nauseated so thank god for these new medications.

The webcam has not worked out too well. I think because I'm on a wireless card, there is a significant delay in the signal. The pictures from home freeze up on my screen but I'm able to get voice which seems to be delayed about six or seven seconds. Andrew was on webcam with me yesterday and was shocked that I still have all my hair. I've been trying to get webcams to work with Judy and Tami, to no avail. We get the voice to work but there is no video.

Mark and the boys seem to be doing okay. I miss them and I miss all of you, too. Thank you for your emails and comments on the blog. love, nancy

Today was more of the same from yesterday. My day consisted of medications, chemo, breakfast, a shower, physical therapy, more chemo, lunch, sudoku puzzles, emails, more medications, more chemo, dinner and I plan to watch TV tonight.

I'm looking forward to the Clipper game tonight in Game 6 of the playoffs. Next week, I wonder who will be named the next American Idol; Will it be Taylor Hicks (Soul Patrol) or McPheever? I still think Chris Daughtry should have made it to the finals. I wonder what the price of gas will be when I get out of here.

I can still taste food and I still have an appetite, so I figure, I might as well eat. I finally figured out why I've been gaining so much weight in here. They are hydrating me with dextrose water which is sugar water. So on top of me eating regular meals, they are loading me with plenty of additional calories. I'm going to be blimp-like when I am discharged.

I haven't lost any hair.. yet, but am starting to feel some other side effects of the chemo (too unpleasant to mention.) But, other than that, I feel pretty good and still have plenty of energy. I'm so glad I can read and respond to your emails. I love getting correspondence from all of you. Thank you for all your kind thoughts. You are all keeping me strong and positive. Love you all! Nancy

I've got my third IV bag of Chemo hanging for the day. They'll hang another one at 6 pm tonight and another at 12 midnight. This will go on every six hours until Saturday when they switch to another Chemo drug. The real problem with this schedule is that I'm not getting any sleep. They come in my room half an hour before each chemo treatment and give me an anti-nausea medication. Then 30 minutes later they hook me up to the IV. Two hours after that they come back in to flush out the bag. 30 minutes after that they take the bag down. In the meantime, there are about four other IV bags they are constantly changing and checking. The IV beeper is constantly going off indicating there is "air in the line" or that the "unit is complete." I have to call the nurses when the beeper signals. The bad thing is that at night, I've learned to sleep through the beeping. I'm also taking about eight other medications (some are not too pleasant.)

I've received one unit of packed red cells and two units of platelets within the past week (For those of you who wish to donate platelets, my doctor has indicated that he would like not only the red cells donors but also the platelet donors to be type A+.) They have me going to Physical Therapy each day and I'll be allowed to continue the PT until my white count is under 1.0. I feel strong compared to the other patients. I hope I don't become as feeble as the others. I have a dietician and am on a low bacteria diet. I feel as though I'm being a little spoiled, like I'm at a special Spa. I order "room service" three or more times a day from a menu and I'm one of two patients on this whole floor who are able to eat (which would explain why there were two nurses in my room zeroing out my bed trying to figure out why I gained 5 pounds since this morning. Yes, they weigh me on this high tech bed.) I have all these nurses, patient care assistants, doctors, dieticians, occupational therapists, social workers and Physical Therapists waiting on me. While everyone is worried about me, here I sit, feeling a little guilty. So please know that I'm doing okay. You'll know when things change. Thank you for your care and concern.

Many of you are asking for the address here at the hospital. It is:

Nancy Sakakura
City of Hope Hospital
1500 E. Duarte Rd.
Duarte, CA 91010

6th Floor, Room 135

Love you all, Nancy

My geek squad showed up again and hooked up my wireless connection on my laptop. Mark bought a wireless Cingular card last night and with Kurt's help they got the laptop to work. YEAH! Now, I feel connected to the outside world. Thanks for the emails you have been sending - they are a definite encouragement.

I received another unit of Kurt's packed red cells today. OH NO!!! HELP ME! Thanks Kurt for giving blood last week. Thanks to all of you who wanted to be added to the list of blood donors. The City of Hope will call you in the next several weeks as I will need several units of packed red cells and possibly platelets, as well.

The Clippers won Game 4 last night in the playoffs. Scott was lucky and was invited to the game at the Staples Center. They had seats in the 16th row.

I received my first dose of chemotherapy today beginning at 6 am. I don't think it was too bad, just too early. The nurses woke me up every two hours last night changing IV bags, taking vitals, giving me meds, etc. Tomorrow I get four times the dosage of Chemo. They have me taking eight different drugs on top of the Chemo. I think they'll add to this list beginning tomorrow. I didn't realize I'd be on so many drugs: me, the person who barely would take a Tylenol. Mark spent most of his day here. He also direct donated two units of platelets that I may need later this week. Thank you Mark and thank you for sacrificing your round of golf today..

I'm eating fairly well. The food here is a step up from airline food, that is, when they used to feed you on the airplane. Today, I even topped my dinner off with Sara Lee chocolate cake.. reminded me of the time when Warren and I crawled behind the couch and ate all the frosting off of the Sara Lee cake and then carefully replaced the lid so no one would ever know.

I fought for hours with the computer in my room. I finally got email to work. However, I cannot update the blog the way I had intended. I could not get my laptop to work. They said something about dial-up. Anybody know what that is?????

Thank you for your support. Thank you to those who are bringing food to my three bachelors. I really appreciate your thoughfulness and generosity.
Lots of love, nance

Nancy was admitted this afternoon (Sunday) at City of Hope. This evening she will have an IV to hydrate her while she enjoys 1) the Clippers game, 2) Desperate Housewives, and 3) Grey's Anatomy. Tomorrow the tough stuff begins. Testing for allergies and commencement of chemotherapy.

Earlier in the day we had a family Mothers' Day breakfast at the Sakakura home which included Mom, Nancy's family, Warren's family, and Kurt's family. Warren was the master chef who organized all the goodies. A wonderful time together was enjoyed by all. We look forward to reconvening again when the bone marrow transplant procedure and engraftment is successfully completed.

The internet connection in her room was not functioning today. As a result, she is still not receiving emails and cannot view or update this blog. Continue sending your best wishes - she should be on-line in a day or two.

I had to undergo surgery today to place my hickman catheter while Kurt and Mom waited in the waiting room (actually, Kurt direct-donated blood for me while he was waiting so it'll be there in the next few weeks when I'll need it. Thanks Kurt.) I have two tubes connected directly into my aorta which will help with blood draws, infusing blood, infusing marrow, and medications. I don't have to be the human pin cushion any longer. They put me under general anesthesia; I don't remember a thing about getting put under. I just remember the nurses calling my name and telling me that it's time to "wake-up." I'm a little sore in the right shoulder because they entered under my collar bone and the tubes come out of my chest. Mom, Mark, Cathy, and I took a class last week on how to care for the catheter in order to reduce the chance of infection.

I had requested an early morning surgery so that if I felt good enough, I could watch Scott play in his CIF Volleyball games at Estancia H.S this evening. Kurt drove me there as I'm not allowed to drive yet due to the anesthesia. Scott's team, Cypress High, was eliminated in the first round of CIF today. : (

I think Warren is coming back into town tonight with his family. They were just here last weekend. He said he's going to help hook up the laptop computer in the hospital room when I check in on Sunday and help get me situated.

I was a little sore today from the double marrow biopsy yesterday (gives new meaning to "give me a double"). I fought with my computers today and messed up my email accounts. I had to call my brother, Kurt (geek squad), to fix it for me. I have several lists 1) things to do at home 2) what to take to the hospital and 3) questions for my doctor. My toughest list is things to do at home because anything can be brought to the hospital for me. What would you do at home if you had to leave for 6-8 weeks? Clean, sort, stock up, just forget it? I'd like to make it as easy as possible for my three bachelors when I'm away. I guess they'll make do and I shouldn't worry about them (easier said than done).

Several of you have already noticed you can add comments to the blogs (you will have to sign up with blogger.com). This is a great way to communicate with Nancy.

Please consider the following:

1) Comments on the blog are open for all to read.
2) Nancy can reply individually to your email to nancysakakura@comcast.net
3) Please keep the emails and blogs brief - short and sweet, like Nancy.

Thanks!

Kurt

I had to have my last pre-transplant bone marrow biopsy today. My doc had to do the biopsy twice because the first sample wasn't good enough. OUCH!!! I'm a tough draw. I also had a transfusion of platelets today because my platelets were at 36 which isn't high enough to go through the Hickman surgery on Friday. As it is, they may still need to transfuse another unit of platelets on Friday during the surgery. This is our last meeting with the doctor before my admission date so Cathy and Mom asked a lot of good questions and we got all the consent forms signed.

Here's Nancy's current schedule:

• Fri 5/12 Surgery to implant a catheter in her chest for chemo and meds
• Sun 5/14 Admission to City of Hope
• Mon 5/15 Chemotherapy begins.
• Thu 5/25 Bone marrow transplant. Isolation begins.
• Engraftment typically will take 4-6 weeks.
• She will likely be at "The Village" at the City of Hope for several months.

Additional items to consider:

• Please send Nancy emails (she has a laptop) and cards (no licking to seal the envelopes, please use tape).
• No flowers or plants are allowed. No exceptions.
• No outside food is allowed (send it to Mark and the boys!).
• She requests no visitors while at City of Hope.
• Thanks for the continued positive thoughts and prayers.

Mom, Cathy, Mark and I, took a "low bacteria" dietary class at the City of Hope today. There are many restrictions on what I can have after I leave the hospital and there are many food preparation guidelines to follow. For instance, no raw vegetables, raw nuts, dried or frozen fruits, all cans (even soda cans) must be cleaned with hot soapy water or alcohol before opening. We also took a tour of the "Village" which are on-site studio apartments where post-transplant patients and their caregivers can stay. Since there will be several hospital visits required each week post-transplant, staying in the village will make it easier for those living far away. We haven't decided for sure if I'll need to stay there but my doctor will guide us when the time comes.

Scott's team took Championship in the FOR tournament today against the VFW Ninjas. Yipee. I got choked up when I realized that today might be the last day this year that I'll see my boys play in a live basketball game. (People have offered to tape the tournament games this year for me!! : ) thank you, thank you, thank you!)

My boys are in the middle of the FOR Basketball Tournament. Tomorrow, Andrew's team will be playing for third place and Scott's team will be playing for Championship. As of today, I have one week until I will be admitted to the hospital. My brother, Warren, spent the entire day going to my boys games, setting up this blog so that you can go somewhere to get my update, and putting webcams on my laptop computer and my home office computer. This will enable me to see and talk to my family from my temporary quarters. Thank you Warren for your hard work and to Dawn for taking care of the kids while Warren was helping me.