Been a real long time

I haven't updated this blog in months. I suppose that that is a good sign. It means that I've been spending my time getting back to living my life and spending less time revolving my life around my illness and my bone marrow transplant.

So what brings me here now? Sadly, a minor setback. Generally, thank God I've been feeling pretty good. My blood counts are almost all normal and my energy level has been pretty good. I have occassional problems with my skin. It dates back to February, 2009 when I was hospitalized with an enlarged liver and had all of these lesions which were never identified, although they were biopsied twice. I still get them, they're still painful and I still don't know what they are. It seems obvious that they're some kind of chronic graft vs host disease since they flare up when my prednisone gets reduced.

My eyes, which have been perfectly fine for months and months, are suddenly bothering me again. Immediately after my transplant they were very swollen and watery. The haven't bothered me in months and are now starting to feel weird again.

And last Monday I woke up at 6am feeling very nauseous. After getting violently ill 6 or 7 times I got back into bed. Next thing I know, I'm in the back of an ambulance. I was taken to Stony Brook University Medical Center with a fever of 104. Turns out I had a urinary tract infection. After 3 days on IV antibiotics, they sent me home with oral antibiotics.

So, I'm home but I feel like the wind has been taken out of my sails a bit. Just those few days in the hospital really set me back. And the Cipro made me real, real dizzy. I'm frustrated (as always) and impatient (as always) and want to get back to doing the things I want to do.

Now I think I'm up to date. I still have to see a dermatologist about the skin stuff. And I've also had some GI issues that are still being sorted out. But I'm working on it.

Thanks for checking in and for your thoughts, prayers and good wishes. I am truly blessed with the best friends and family in the world. Without the love and support of all of you, I would not have been able to get through this.

Happy Mothers Day

First, I want to wish a Happy Mothers Day and happy everyday to all of you wonderful Moms out there. I had a wonderful day. David and I went to see 'A Behanding in Spokane', a Broadway show starring one of my very, very favorites, Christopher Walken. It was really wonderful, in spite of the fact that the weather was very UN-Mother's Day-like. It was pretty cold and very windy. I'm glad that I didn't plan to barbeque. After the show, we came home and we went out to dinner with my children, Jake's girlfriend Yasmine, Illana and Keith and their girls. It was nothing fancy but really, really nice. All in all, a very nice day.

Now for the health update... I saw Dr. Schuster on Friday. Luckily (or maybe not so luckily) the sores that had been bothering me on my legs were no longer inflamed and my ankles which had been swollen were no longer swollen. I still had some skin irritations and fatigue and pain in my muscles and joints. Thank God my blood tests were all normal. He said that it seems to him like a chronic gvh (graft vs. host) flare and he put me back on 20mg of Prednisone and Nexium to prevent stomach problems. He wants to see me in two weeks and hopefully, at that time I'll be feeling better and we can begin weaning off the Prednisone. I hope it goes as planned because I'd like to spend as little time on the Prednisone as possible.

I took my first dose yesterday morning and my second this morning. I think I am seeing an improvement already. I think I am starting to feel a little less "out of it" and, although I'm still achy, my joints and muscles seem to be less painful.

I hope you're all doing well, enjoying springtime and spending time with people you love. As always, I thank you for checking in and for your continued thoughts, prayers and good wishes. Believe in Miracles.

Laid Up Again (sigh)

I'm not feeling too well today. My skin is bothering me and I'm very achy. Also, my stomach is bothering me. Friday night I slept from 12:30am until 10:00am. Then I slept another 3 hours during the day Saturday. I should have figured that there's something brewing. Hopefully it's just a virus or something. I'm spending the day in bed and hoping to wake up feeling better tomorrow.

I'll keep you up to date. Thanks again for all your good wishes. Believe in Miracles.

UPDATE 5/5: Did lots of online research of my assortment of symptoms. Always a risky venture. I think I'm having some kind of gvd-induced autoimmune reaction from coming off of all the meds. I went to see Dr. Freidman, my internist on Monday. He drew blood and sent me for a bilateral venous doppler to rule out any DVT. I've got pain in swelling in both legs but I'm pretty sure that it'll be negative. Anyway, I think that if it were positive they'd have gotten in touch with me by now. I'm waiting to hear the results of the blood work. I spoke to Dr. Schuster and he wants to see me on Friday. I'm feeling pretty rotten, very, very tired, achy and swollen, assorted skin rashes, etc. Not a pretty picture.

I'm impatient for the results and want to get to the bottom of this asap so that we can treat it and move on. I had been feeling so well and had been walking every day and really, really enjoying it. I'm trying not to get too frustrated and will keep you up to date on the situation.

Thanks again for everything.

small bump in the road

I've been off all meds except for the one and I've been feeling pretty good. I've been walking every morning and am beginning to make plans to go back to school. Really, all good, Thank God.

But a couple of residual spots on my legs that have been there since February 2009 have "flared up". I went to see my friend Suzanne who is a dermatologist. I gave her the whole background story about how these lesions all popped up when I was in the hospital back in February and how they had about a gazillion doctors check them out and an infectious disease specialist check me out. She took a look at them and said, "Hmm, they look like erythema nodosum. Why didn't they call in a dermatologist?" Well, DUH. They did call in a dermatologist who looked and biopsied and still had no idea.

So now, from what I've been reading, I think she's right on the money. I called Dr. Schuster and brought him up to date and he said that I ought to do whatever Suzanne suggests and to let him know how it is in a couple of days. I am wearing a compression stocking and keeping it rested and elevated (when I'm not out running errands) and taking Advil. Though these measures do provide some relief, I'm still in a lot of pain, and not only in the one spot on my ankle, but in a few others too. She said that the Prednisone may have been suppressing this inflammation and now that I'm off it it's flaring up. That makes sense. But I've also recently discontinued a few other meds. So, for now, who knows?

I'm going to continue trying to rest it but I think I'm going to try to find something stronger for the pain because I'm really uncomfortable. David was doing some research and thinks that perhaps I ought to see a rheumatologist. I'm going to give it a couple of days and see how it is after the weekend.

Thanks for checking in and for all your good wishes and thoughts and prayers. Have a wonderful weekend, a good shabbos. Believe in Miracles!

Stuff I left out

Hi. I was reading over my last post and I can't believe that I forgot to include some really interesting information.

First of all, at last week's visit with Dr. Schuster, he took me OFF ALL MEDS except for one. Incredibly, I now take one pill a day. That's right, ONE PILL A DAY!!! It's unbelievable to me. I mean, I was taking so many meds, so many times a day...I could barely keep track and now...well, now, it's one a day! The one we're continuing is Valtrex, which is anti-viral. The reason we're not disconinuing it yet is because Valtrex prevents the virus that causes Shingles. So, we're still trying NOT to get that.

OK, now the second bit of news. I want to tell you about "my project". When I was in the hospital for the 5 weeks for my transplant in November, 2008, the ordeal began with a week of chemotherapy. After that, as expected, I lost my hair. Unless you've been down that road, you really don't realize how cold your newly bald head gets. I was so chilled.

Luckily, one of the nurses brought in a basket of handmade hats that someone had donated. From that, I picked one out and it was a lifesaver!

Now for my project. I decided that, since one of my most favorite things to do is needlework, I would start to knit and crochet hats and donate them to patients getting chemotherapy. I've begun crocheting a bunch of them from yarns that I already have.

I happened to mention this to a friend of mine who works at a crafts store and she was kind enough to donate a large bag of yarn for my project. Another friend decided that she, too would like to crochet for this project and ... then there were two.

I'd like to invite you to join me in my project. Either by donating yarn or your talents.


So far, I've been working exclusively in cotton and creating seamless designs for women, men and children. This is something I can do to give back a kindness.

Now you're pretty much up to date. Have a beautiful weekend and a good shabbos. Thank you again for checking in and for your continued thoughts, prayers and wishes. Believe in miracles!!

Long Time No See

Well, it's been quite I while since I posted last. I figure that's a good thing, that things are pretty good.

I saw Dr. Schuster on Friday after 6 weeks. Thank God I got a good report. My counts were amazing! WBC 4.5, HGB 12.1!! PLT 127. Wow! Almost like a normal person.

I've been feeling pretty well. My bronchitis cleared up. I went down to Florida on March 15 and was there until April 14. I had a pretty nice time. Passover was a lot of shopping, schlepping and preparing. Once it was over though, I was able to do some relaxing. I took a drive down to Key West and watched a beautiful sunset from Mallory Square.

Then I spent a couple of days at my Mom's in Deerfield Beach. Then Mom and I took a drive up to Orlando to meet Marsha. We met at Downtown Disney and spent a few wonderful hours together. It was great seeing her and now I am looking forward to the next time..

Though Florida was a nice time, I was really looking forward to getting home. When I left New York it was really winter. Returning to the beauty of spring was wonderful. Going away is always nice, but there's nothing quite like coming home.

Thank God everyone is doing well. We're looking forward to a double college graduation on May 27. I can't believe that both of my babies are graduating from college. Where has the time gone?? I'm so proud of both of them and am really excited about attending the ceremony.

Aside from that, we're taking it all one day at a time. Thank you for checking in and for your good thoughts, prayers and good wishes. Believe in miracles!

After the Storm

Well, it blew like the dickens around here this weekend. There are trees down all over the place and many, many homes without power, including my sister's. Thank God we're all ok, though.

My cold/bronchitis is improving, too. Yesterday I really started feeling better. Just in time for a formal dinner at which my sister and her husband were being honored! (See photo) It was a wonderful time and I felt good. And I was very, very proud of them. Mom flew up on Thursday and will be returning to Florida tomorrow.

I saw Dr. Schuster on Friday. It was a very positive visit. First of all, he said that my lungs sounded clear. That was a relief. Secondly, he discontinued my Prednisone completely. Wow! I've been on that stuff for so long, I can't believe it. Also, I can now eat raw fruits and veggies. I've been sooooo careful for so long I just couldn't wait to go out to a restaurant and order a salad! He also reduced the dosage of one of the other meds. So, I'm really started to taper off.

I asked about my vaccinations...like which ones I'd need to get and when would I get them, etc. He explained that I should actually have the immunizations from my donor (Avram). At the two-year mark, we check and see if I have the titres and, if necessary, have whatever boosters I may need. Maybe none. Interesting and surprising.

Of course we spoke about the fact that I was left high and dry and felt abandoned when I was feeling so sick over the past couple of weeks. He did apologize and explained that while he's changing locations/offices, etc., during this time of transition, there are bound to be some glitches and the phone situation is one of them. He also said that if and when I feel I need to see a doctor, I should probably go to my primary care physician. Unless it's specifically Bone Marrow Transplant related, there's no reason I need to go to see him. Until now, everything went through him. I was not permitted to take any medications with aspirin or ibuprofen. But now, he said I could just go to my PCP. I guess he's pretty much done with me. I'll see him in another month at which time he'll further reduce the meds. Hopefully, this will be a quick and painless process.

On other fronts, everything is pretty good, thank God. I'm leaving to Florida tomorrow with my Mom. I'll be staying with her for a couple of days and then heading down to Miami Beach to prepare for Passover. Am I looking forward to this??? Yes and No. It's going to be a lot of work and I didn't really want to do a lot of work this year. But I'm glad that we'll be together...most of us, anyway. Avram will be working in Arizona so his family won't be with us this year. They will be missed.

Thanks again for checking in and for your continued thoughts, prayers and good wishes. Believe in Miracles!

Friday Afternoon Update

OK, here's the deal. I've had a cold and bronchitis for about a week but it's starting to get better. I had a chest x-ray on Monday to rule out pneumonia and Thank God it was negative. So, I've been taking Vantin (antibiotic) since Monday and started feeling an improvement yesterday.

Another thing going on is the "issue" with my doctor. I don't remember if I've mentioned this before, but Dr. Schuster has left New York Presbyterian Hospital and is now at Stony Brook University Hospital. Needless to say, I totally freaked out when I heard he was moving. I can't imagine what I'd have felt if this were six months ago. I had a choice of staying on with him or staying on at NYP with another doctor. I chose to go along with him. Honestly, now I'm questioning the wisdom of that decision.

Last Saturday, I was feeling really sick. So sick, that I called the phone number where I'd been told I'd be able to reach him or a member of his team "24/7". Not only did I not reach a person, there was an answering machine with a message telling me that the office is closed and that I can leave a message. It didn't even give an emergency number. I couldn't believe it. I was left totally high & dry.

Monday, I still hadn't heard from him and so I called my local General Practitioner. At least I was seen right away. She's the one who sent me for the chest x-ray and put me on the antibiotics. I finally heard from Dr. Schuster late Monday afternoon. I told him what was going on and he said that I should continue with the meds.

I guess I'm kinda rambling on about this but it's really bothering me. I don't know what to do. I'm still on the Prednisone, along with a few other meds (VFend, Vasotec, Valtrex & Nexium). I'm going to have to get all of my vaccinations soon. (Remember all those "baby shots" we all got? Well, I gotta get 'em all over again). Do I change docs?? This is really distressing. Any suggestions?

OK, Thanks for letting me vent. Thank you for your continued support and prayers and good wishes. Have a great weekend, Shabbat Shalom. Believe in Miracles!

Note to Devorah: I hope you're doing well. I sent an email to your gmail address. I hope you got it. If you can let me know, that'd be great. If not, I'll try to reach you again next week. Be strong & stay positive. Shabbat Shalom.

Busy Busy Busy

I'm finally taking a break. For the last 2 days I've been cooking and baking, practically non-stop. I don't mind doing it, in fact I really love to cook. I'm just wiped out now. So, here I am, sitting down and giving you an update.

As of this past Wednesday, I'm down to 2.5mg. Prednisone WEEKLY. That's thrilling to me. I'm really looking forward to being off this medication. The drawback is the withdrawal symptoms that I seem to experience each time I taper off a little more. Twice this morning I had very intense waves of nauseau. They pass in just a minute or two but they're very unsettling. I know I just have to tough it out. I'm just hoping that it doesn't get worse. On top of the "little cold" that I have, I don't want to deal with it.

Everything else is good. The kids are all excited about Purim. I know that they seem a little old for "dress up" but it's really nice to see them all abuzz.

Thank you so much for checking in and for your continued prayers and good wishes. Have a good Shabbos, a Happy Purim and Believe in Miracles!!

All OK. Enjoying life a bit.

Last Monday 2/8 I hopped on a plane and headed down to Florida and surpised Mom with an impromptu visit. It was really wonderful. I stayed for week and returned on the 15th early in the morning, giving me enough time to get myself together and attend a wedding on the night of the 15th -- which was also wonderful.

Thank God Mom's doing great. She's loving her new place and has met tons of new friends. She's busy practically 'round the clock. We had a really great time together, went down to Miami and checked out some rental apartments for Passover, went to the Hard Rock Casino in Hollywood, ate out at great restaurants, went to knitting stores, etc. It was really great.

I've been feeling good. Most of the aches & pains and rashes that I had from the Prednisone reduction have abated...just in time to reduce my dose again! As of tomorrow, I'll be taking 2.5 mg/WEEKLY (down from 2.5 mg/2x week). I'm hoping that I won't have any more reactions, but I'm prepared for it if I do.

I'm planning on going down to Miami for a month on 3/15, returning on 4/15. I'm looking forward to it, but not to all of the work. Passover sometimes seems like more work than I can deal with. But if I go early enough and start preparing enough in advance, I think it'll be more manageable. The most important thing is that we'll all be together (except for Avram, who is going to be working in Arizona).

Other than that, all is OK. Rachel and Jacob are working hard at their studies and are both expected to graduate in May!! David's been working hard (too hard) and is definitely looking forward to some vacation time in the sun.

Thank you for checking in on us and for your good thoughts and prayers. Wishing you a Happy Purim. Believe in Miracles!

Long Time No See

It's been quite a while since I last posted. That's good news. Thank God we're doing well.

Mom is feeling great and is enjoying her life in her new place in Florida. Her social calendar is so full that she barely has time to sleep. Good for her! She's having a great time.

Illana and her family are in Israel. I miss her terribly when she's not here. She's due back tomorrow.

Avram and family are good. We've been talking about Passover and how we'd all like to be together. Hopefully, we'll be able to work that out.

Rachel and I flew down to Florida for a week and a half. We spent some time with Mom and the rest in Miami Beach. It was real nice. David and Jacob flew down to meet us and spent 4 days there and then we all flew home together. Actually, Jacob left the day before we did. We spent some time at the Hard Rock Hotel & Casino in Hollywood. What fun! We actually walked away with our money and then some!

I saw Dr. Schuster yesterday. My counts are very good. We reduced my Prednisone a bit further. I'm now down to 2.5 mg. twice a week. I'm to do that for 3 weeks and then go down to once a week. I'm due to see him again on March 12. Amazingly, he's no longer at New York Presbyterian Hospital! He's now at Stonybrook University Hospital where he's setting up a BMT Unit. He's got a satellite office nearby and that's where I'll be seeing him. Stonybrook is just too far away.

I think that's it for now. You're pretty much up to date. As always, your prayers and good wishes are greatly appreciated. Thank you for being there. Believe in Miracles!