Nancy's Update

We're still making small strides! : ) I'm happy to report that we have a new high for my platelets which came in today at 44 (normal 150-350.) See, testing my platelets by running into stuff and cutting myself hasn't hurt my platelets one bit... : ) (I know, you're all thinking maybe my counts would be higher if I would just sit still so I won't get bruised or cut. Oh, now what fun would that be?) Anyways, my white count went into the low normal level at 4.0 (normal 4.0 - 11.0.) My hemoglobin stayed about the same as last week at 10.2 (normal 11.5 - 15.5.) Overall, my doctor is happy with the progress over the past several weeks. We're going in the right direction and even though it's taken a while, it's moving up! As we get closer to normal counts, he'll reduce the anti-rejection drugs. For now, he's cut my prednisone (steroids)in half again and made my appointments two weeks apart, YES, I SAID TWO WEEKS apart! This is a first since my transplant. I've also now gone one month without any transfusions! Woo Hoo...

Speaking of prednisone; some of my friends saw me and I think they were a little shocked at my face. I forget to mention things.. the prednisone has made my face puffy (or was it the Marie Calendar pies?) Steroids will do that, so if you see me don't be shocked if I look a little ... well, swollen in the face.

Since I won't have another doctors appointment for two weeks (keeping my fingers crossed as I write this), don't be surprised if I don't blog for a while. I'll blog when I have something to report, good or bad. If you don't hear from me... no news is good news...

Thank you for keeping up with my progress via this blog. Thank you all for your positive thoughts and prayers. I love you all... nancy

We're breaking records again folks!!! Today, my platelets were at an all time high since transplant of 31 (normal 150-350) as was my hemoglobin at 10.3 (normal 11.5 -15.5). I've now gone three weeks without any transfusions of platelets or red blood cells! Not only is this the longest I've gone without transfusions since my transplant, but also the longest I've gone without transfusions for the past 13 months!

Here are my other counts which did not break any records, but are still respectable; White count is at 3.3 (normal 4.0-11.)which is low, but still okay and my red blood count is at 2.97 (normal 3.8 - 5.2.) Even though all my counts are still below normal, they are moving in the right direction and for this, we are thankful! I'd like to thank you for your continued thoughts and prayers as I continue in my recovery.

Also, our thoughts are with all of our relatives and friends who experienced a fairly large earthquake in Hawaii this past weekend. I'm glad you are okay and I hope the clean-up isn't too bad. Thank you also for following my blog from Hawaii.

I love you all and you must know that you've been instrumental in getting me through the transplant and post-transplant process. I've still got a long way to go, but slow and steady, we will beat it! Thank you again. With love, nancy

No news to report in the way of blood counts since I won't have another appointment until next Tuesday - yeah! But, as I did my marketing this morning, I realized how many people stare at me. I am still wearing my super thick face mask and hat since I can't have any germs or sun exposure (the sun causes GVHD or rejection.) It's kind of funny really because people don't know whether or not you're contagious so some people steer clear while others look like they feel sorry for you. The kids are really funny because they stare as you are going by, but they are well-mannered, as I haven't heard a one ask their parent any questions yet. I'm sure they do once they turn the corner.

I was in the bank with my face mask and hat pulled down low (only my eyes were showing.) I saw the teller take a double-take of me, at which time I realized that she was probably wondering if I was going to hold her up! So I had to laugh, and I asked her if I scared her. She replied "no" and a little nervously glossed it over and asked what had happened to me. It's probably not very nice of me, but kind of fun to observe peoples reactions to my appearance. I think I'll slow down to enjoy peoples responses a little bit more. : )

Most of you are aware that for the past several years we've worked with A3M in registering potential donors into the National Marrow Donor Program. Many of you have donated precious hours working the marrow drives in hopes of finding me and others in need a suitable donor. A3M has been so instrumental in helping me through the transplant process. They were there for me before, during and even now answering questions I have had along the way. This weekend is another opportunity to support A3M in their endeavors. On Sunday, October 15, they will have their annual Charity Concert. Although the dinner tickets are sold out, there are still concert tickets left. You can see Lani Misalucha with the Society of Seven at the Cerritos Center for the Performing Arts, 7 PM! Plus, there will be lots of fun with the raffle tickets and silent auction. Call for tickets: 800)300-4345.

That's it for today... thanks for reading. Good Luck A3M for a successful evening filled with fun and enjoyment! I have to miss the big event this year because I'm still recovering, but you can bet I'll be back next year with bells on! love, nancy

What's this??? Still no need for transfusions! Hallelujah! Even though I didn't break any more records just yet, my platelets were still holding at 23 and my hemoglobin at 9.8. I did not need any transfusions today and my doctor has changed my appointments to once per week!!! Wow, what's a girl to do? So, if I don't update my blog for a week, you'll know why. Mom and I celebrated today at Marie Calendars by buying two pies during their $5.99 per pie, October Special. Yum... chocolate cream!!! No, it wasn't one for her and one for me... : ) We didn't eat lunch there because I'm still not eating out. We just picked up our pies and ran!

Since there is now life after my doctor visits, I came home and continued work on my stacks of medical bills. Seems there are many disparities between the statements I receive from the City of Hope (COH) and the Explanation of Benefits I receive from my insurance company. I've been working feverishly to sort them out but need COH to also work it out on their side, which they are trying to do. So far, I've been correct on the errors also made by the Medical Group billings (doctor bills.) The hospital bills are another story but I must say, my accounting background has helped. We'll get it all straightened out very soon.

The other thing that happened today was that my doctor cut my prednisone (steroid)prescription in half. I was taking 20 mg. per day and am now down to 10 mg. Maybe I won't inhale those pies after all. (Steroids do effect your appetite... I should know, I feel like I eat all day long.) They had me on the steroids to help with the Graft vs. Host Disease (GVHD) or rejection. (They actually had me on 60 mg. per day when I was in the hospital.) Hopefully, my symptoms will not reoccur when I cut back on the medication.

Thank you for keeping up with me. Love you all, nance

I had an appointment on Friday at the City of Hope. I'm glad to report that all is still well! We're breaking records here folks! : ) I posted my highest platelet count again at 27 (normal 150-350) by myself. My hemoglobin dropped a little but was still good at 9.2 (normal 11.5-15.5) and my white count is still doing fine at 3.0 (normal 4.0-11.) Since my transplant in May, this is the longest period of time I've gone without a transfusion. It has been over a week and a half since my last one.

I hope to continue on this path. I'm still being careful about what I eat, washing my hands, wearing my mask, and being exposed to the public. It's kind of sad, but I actually enjoy my infrequent trips to the market, bank or post office. I haven't gone out much more than that. I don't enjoy going to the City of Hope twice a week, but, that's way better than my daily visits or every other day visits which I endured over the past six weeks. I'm looking forward to the day when I can go to the hospital once a week and eventually once every other week! That will really be something! : )

I want to thank all who have generously donated their blood products to me. You sustained me over the past 4 months. I hope I'm not saying this prematurely, but, I hope I won't need too many more transfusions. If you would like to continue to donate blood/platelets at the City of Hope, you can donate in my name. There is a blood shortage, so if I don't use it and the product gets close to the expiration date, they will use it on someone else in need. Otherwise, don't feel obligated to rush out and give blood or platelets as I am hopefully clear of whatever caused the six-week critical drop in my counts. Remember, whole blood lasts over a month and platelets last only a few days. If my status changes and I do require transfusions again, I will let you all know via this blog site. My sincere thanks to all who helped me in this way. This was a great gift of life and I'll never be able to appropriately thank all of you who spent hours in the donor center and hours on the road in order to help me out! I also want to thank all of you who spread the word about my critical need and sent friends and family to the donor center. You are truly my heroes!

My next appointment is on Tuesday. I have twice weekly appointments now, so please don't worry if I don't blog more than twice each week. Thank you for all your thoughts and prayers. With love, nance

Well, it seems I did turn the corner.... no transfusions for a whole week now!!!Thank you for all your wonderful thoughts and prayers!!!

My platelets were at 22 (normal 150 - 350) this morning (went up 2 points by themselves since Sunday!) My hemoglobin also went up by itself again. It was at 9.1 on Sunday and today my count was 9.6 (normal 11.5 - 15.5.) The white count is still bouncing around a bit, but today it was at 3.5 which is just fine with me (normal 4.0 - 11.0.) Although, these counts may seem low, which they are, let me remind you where I was for the last six weeks ... platelets <5 to 12, hemoglobin in the 7's and 8's... so this is a definite and welcome improvement. I hope to continue this uphill trend and eventually climb into the normal ranges! : ) I know it can take awhile but I plan to get there!!!

I saw my doctor today and asked about my possible attendance or appearance to an upcoming family reunion. Since, I'm just recovering from a possible virus which caused so many problems with my blood counts, he recommended not attending such a function due to exposure to many people at once. My immune system is very poor still and I'm very susceptible to catching anything around! So, Sagara Family, sorry.. but the doctor has spoken. I'll be with you in spirit! I know you'll all have a fantastic time!

Thank you again for following my blog and for your continued prayers. As always, I feel so fortunate to be supported by so many caring and loving people. You've all helped me stay positive and focused on recovering! I love you all, Nancy

Hey, whose blood counts are these anyway??? I had another good day at the clinic today, Sunday, 10/1. Mark took me in and we waited for the counts. My platelets held at 20! The nurse wanted to give me a unit of platelets but I told her this was a good count for me. She was afraid she'd get in trouble if she let me go without a platelet transfusion. I assured her she wouldn't be in trouble. The other amazing thing that happened was my hemoglobin was 9.1, which is still low. But, for the first time in six weeks, my hemoglobin went up by itself without having a red cell transfusion. My hemoglobin level on Thursday was 8.5 and I turned down the transfusion as it was borderline. Since they left it up to me and since I was feeling good, I wanted to see if it would hold on it's own. I was right, it did!! : )

I pretty sure I've turned the corner on whatever was causing the low platelet and hemoglobin counts. I've always been optimistic that this would pass, but it took longer than I had hoped. Now, I can resume recovery. Yipee!!!

Thank you for your support! You've all been patiently waiting for me to recover and resume a regular schedule. I still have to be very careful, especially as flu season is upon us. I need to stay away from crowds and I still wear my mask when I'm in public, which is hardly ever (I might try just a quick run to the market when it's not crowded.) My immune system will be poor for the first year post-transplant and maybe even longer than that. In fact, I think I wrote before how I will probably get all my childhood immunizations again at or near my one year post-transplant appointment. So, thank you for traveling on this journey with me and for your patience. I, too, have learned to be patient through this process. Love you all, nancy