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!!
Leah - congrats on all fronts!! They probably want to check your platelet levels before they take out your hickman - I think they have to be above 70 and will transfuse if they are not. But I loved getting mine out - what a relief it was. Also, I had a BMB under sedation, and it was the most enjoyable experience ever. It didn't even hurt afterwards, and the doc said it was because the muscles around the site were not tense during the procedure the way they were the first 2 I had. Keep us posted on your progress. I love hearing how well you are doing.
ReplyDeleteLove and Hugs!
Marsha
Hi,
ReplyDeleteThanks for all your updates, it is so good to hear that things are just getting better and better. You never leave my thoughts!
Now let me share our good news, Leah had a baby boy on Monday night. There is no greater miracle in this world than to see a healthy baby come into this world! Mazel Tov!
Yesterday Leah and the baby came home and another big miracle to share with you is that Chavie came home yesterday and is Baruch Hashem feeling very good!
We all must believe in Miracles, there is nothing that our Teffilos cant accomplish!
Keep up your great spirits, my best to everyone,
Good Shabbos!
Love,
Zeldie