Thursday Morning

It's been a bit of a tired week for me. I had a house full of guests (which I LOVE) last Friday night and all day Saturday. It was really, really nice, but still tiring. Then we had a houseful for a BBQ on Sunday night -- again really, really nice, but exhausting. THEN on Memorial Day, we went out to the Tanger Outlets in Riverhead. Now that's incredibly exhausting. So the next few days I just stayed local and did whatever I could.

Tonight starts the holiday of Shavuot. Jacob is going to be in Connecticut with Yasmin. Rachel will be here with one or two friends. Mom will be here and of course, David and I. Hopefully, Rami and Lior, friends from Israel who have been staying with Illana will join us. Illana, Keith and the girls left yesterday for Boca Raton to spend the holiday with Keith's sister's family. (I miss them already).

I will be seeing the doctor on Monday. I'm scheduled for Pentamidine, a pulmonary function test and an echo cardiogram. It'll be a long day for me. I'm not sure yet who's going to be taking me, I guess that's one topic for discussion this weekend.

I've been feeling a little more "with it" since having the chest catheter removed, thank God. Whether or not it's psychological doesn't make a difference to me, I'll take it however I can get it. It's just that everything is easier without it -- showering, dressing, moving around...etc. and it's one less thing to worry about. I'm so grateful for whatever improvements I can report.

I'm grateful to you, too for checking up on me and for your continued support, good wishes and prayers for my recovery. Thank you. Thank you. Thank you. Have a beautiful Shavuos and Shabbos and a terrific weekend.

Friday Afternoon

I had a pretty good week, Thank God. I was out and about, shopping with Illana on Tuesday and Wednesday. But yesterday I was feeling pretty washed out and today, too. Also, my eyes are really bothering me a lot. They felt better last week than they do this week. I have no idea what it is that affects them...for better or worse. The site from the catheter is healing nicely.

I've been cooking all morning but I'm going to try to rest up this weekend. Maybe I just overdid it with Illana earlier in the week. Gonna take care of me, now.

Have a beautiful weekend and a good shabbos.

Monday's Appointment

WOW! I am pleased to report that I had a very good visit today. My counts were the best EVER, Thank God. Last week my hemaglobin was 9.6. I didn't expect to need a transfusion today but I did expect it to be somewhat lower. Instead, for the first time, it went up on its own...without getting blood. My platelets were 133! That's just a notch away from normal -- again without getting platelets! I am so very grateful.

Another exciting news item, this morning was my last dose of the Prednisone. For the last few days, I noticed a reduction in the puffiness in my face and neck and an improvement in my eyes. Whether these improvements are from the removal of the catheter or from the reduction in Prednisone and the introduction of stronger eye drops is anyone's guess. It doesn't matter to me, as long as it continues in that direction. I am truly blessed.

I called the doctor on Friday because I was nervous about going into the weekend with such a bad cold. Joanne prescribed Levaquin and after 4 days, my cold is much improved. I still have a little bit of a cough left and a tiny bit of nasal congestion but I'm feeling so much better.

I know that my Dad and my Grandma are working overtime for me and I think, for the first time since my transplant, I'm starting to see the light at the end of the tunnel. Thank you so much for your continued love, support and prayers. Keep on believing in those miracles!

Friday

I'm really suffering through this miserable cold. I should be cooking right now but I just haven't got what it takes. I just want to laze around and drink tea with honey. I'm taking Mucinex DM but I don't notice much of a difference. I still have this unproductive cough. Hopefully this won't last too much longer.

Mom is out West in Utah, vacationing with friends. She really needed this and I'm so excited for her. It's got to be difficult for her emotionally. For years, she and Dad vacationed with this couple and this will be the first time she's going it without him. She's a trooper, though and I'm sure she'll have a great time.

I wish you all a beautiful weekend and a Good Shabbos. Thank you for checking on me. Believe in Miracles!

Wednesday Afternoon

Well, it's out! Thank God, yesterday's catheter removal went very well. In fact, it went better than very well. David and I got there at 9 for the blood test and possible platelet transfusion. But my platelets were over 90!! I didn't need any transfusion at all. I had a lot of extra time and amazingly, the Department of Interventional Radiology took me right in. It seems that they had no other patients scheduled because they were in the process of interviewing new doctors. So they took me in, numbed the site with local anesthesia, took out the line and sent me on my way. The whole thing took about 15-20 minutes. I was finished before 11. I should mention that I did pass out during the procedure, but that's pretty typical of me. I got dizzy and my ears started ringing and the room started spinning but I never lost consciousness and they just laid me back a bit and I was ok.

When I got home, the little coughing that I had been doing for a day or so intensified and I was coughing my head off. Also, because we stopped at the supermarket on the way home and I probably did more moving/bending/lifting than I was supposed to, the wound started to bleed again. And by the time the anesthesia wore off, I was feeling pretty sore. Overall, once I got home I really wasn't feeling too well. I called the doctor to make sure I could take cough medicine and got the ok. I also took something for the pain. I was pretty drowsy last nite.

I called the doctor's office again this morning to ask a question about pain relievers and was told that the doctor wanted me to come in because I really didn't sound so good. I got Rachel to drive me in this morning. I had blood work again and then saw the doctor. I'm still coughing alot and I have a sore throat but Thank God my lungs sounded ok. He said it's a upper respiratory virus and I should continue treating it symptomatically. So I have a cold but thankfully no more catheter!

It's a real milestone for me. It's a big step toward getting back to normal and I'm very happy about it. Thanks for thinking of me and for your prayers and good wishes. Can't doubt those miracles for a second! They're all around us. I hope you're all well. Enjoy the beautiful weather!

Monday Morning

I'm scheduled to have the Broviac/Hickman Catheter removed tomorrow at noon. I've very excited and a little anxious. It's done by the Department of Interventional Radiology. I'm supposed to arrive at the hospital no later than 9AM for blood work. At last count, my platelet count was borderline for having the procedure. They like it to be above 70 and last Monday mine was 60. So, if it's still below 70, they'll probably want to give me a bag of platelets before removing the line.

I've been coughing a lot lately -- like everybody else. I'm pretty sure it's allergy. I have no fever. I hope and pray that it doesn'y delay the procedure. Having the catheter removed is a huge milestone for me. It was inserted a week before my transplant -- on November 17, 2008. It's been in for almost 6 months. Flushing the lines, changing the dressing, taping it up to shower...these are all constant psychological reminders of what I went through/am going through. I think that once the line is out, I'll begin to feel more normal, just not having this "three-headed monster" hanging out of a hole in my chest. I'll be able to dress more normally and showering wont be such a production. Also, I suspect it's a factor in my eye issue and I hope that there will be some improvement in the chemosis once it's out.

We had a BBQ here yesterday for Mothers Day. Honestly, I didn't want to do it and I wasn't really feeling up to it...I was kinda shamed into it. My brother wasn't going to and my sister said that she didn't feel up to it so it became mine by default. I mean, after all Mom's done for me... how could I not?? She's leaving on Tuesday morning for a trip out West - to Nevada, Arizona and Utah. I'm sure she'll have a great time but she will be missed.

I want to wish all of the Mothers a Happy Mothers Day, especially the New Mothers!! Mazal Tov to all of you. Thank you all for your continued caring and your prayers and good wishes. This recovery is seemingly longer than I expected it to be, but I'm not complaining. I've had a couple of bumps in the road, but so far, nothing that couldn't be managed. Thanks to all of you and to my Angels who are constantly listening and supporting and working overtime. Believe in Miracles!

Wednesday Night

I had an appointment on Monday and got my Benadryl/Pentamidine. This time, I saw the doctor before I got the Benadryl so that I was sufficiently coherent to have a conversation.

I had done some research last week and also spoke to two friends who happen to be oncologists. I learned that the chemosis (inflamed conjunctiva), coupled with my facial edema could be caused by an obstruction of the superior vena cava. My catheter is inserted between the superior vena cava and the arch of the aorta and so this seemed like a definite possibility to me. I called my doc to discuss this but he said that I don't have that. When I was there Monday, we discussed it further because I wanted to have whatever diagnostic test would either confirm it or rule it out. He sent me for a sonogram. Unfortunately, they were unable to see where my catheter is inserted because it's under my clavicle.

Either way, he & Joanne (Nurse Practitioner) feel that it's time for the catheter to come out. It's been in for almost 6 months. I really, really want it out. I needed some blood tests run before they'll take it out. This morning they faxed me the prescription for the tests and I had them done today. Hopefully my doctor will receive the results tomorrow morning and then we can schedule a day to remove the catheter -- ASAP.

They reduced my Prednisone further, too. I'm now taking 2.5mg once a week. I'm pretty happy about that. At my next appointment, two weeks from now, I hope we'll discontinue it altogether.

I was supposed to have a bone marrow biopsy at the end of May -- the 6 month mark. For some people, having a bone marrow biopsy is no big deal. I've spoken to people who said it was no problem, slightly uncomfortable, but ok. For me, it's absolute torture. I've had so many over the years and each time, it's the most horrible thing. So this time, I asked if I could get some kind of anesthesia so that I can sleep through it. YAY! I'm scheduled to have it done on June 9 in the OR with anesthesia.

I think we're up to date now. I've been feeling pretty well, moving in the right direction -- slowly. Thanks for checking in and for keeping me in your thoughts and prayers. Believe in Miracles!!

Friday Afternoon

I went back to the hospital on Tuesday and got 2 units of blood. It was a real hassle because Rachel had to drive me there and the timing wasn't ideal for her school schedule and then Jacob picked me us up (me & Mom) and he was busy working on a paper for school. And neither of them had working AC in their cars in 95-degree heat. Well, whatever, it's done.

I always expect to feel stronger right after a transfusion, but it usually takes a couple of days for me to feel a real difference. Yesterday was the first day I was able to get myself together and run some errands. Today I did some cooking. But both days, I'm pretty wiped out by the early afternoon. I think that I expected to be feeling stronger by now but I'm trying to be patient and rest when I need it. It's been just over 5 months since the transplant. At around 6 months, they're going to start weaning me off some of the meds.

I'm due for another bone marrow biopsy toward the end of May. I dread these. Some people have no problem with them but I find them to be EXTREMELY painful. I don't understand why they can't use some kind of sedation, like they use for a colonoscopy. I have to remember to ask about that.

My eyes are really bothering me alot. The puffiness and constant running makes it difficult to focus without repeatedly blinking to clear them. They eye doctor called it Chemosis -- inflammation of the conjunctiva. He gave me drops which I used for a week. When I went back to see him, we agreed that the drops didn't do anything at all (except cost me $50 copay). Dr. Schuster said that it's GVHD and that he sees it all the time. (Although I could swear that he told me that there was nothing wrong with my eyes). I hope that there's something that can be done for it.

Besides these few little things, I'm moving in the right direction and looking forward to feeling better and stronger. I have a lot of love and support from my family and friends. I thank you all for all the good wishes and prayers. Have a good Shabbat and a wonderful weekend. Believe in Miracles!