It is hard to believe we are entering our third season here in Richmond. When we first arrived here, it was still Spring. The days move by and although I miss home terribly, I am thankful to be alive and to be doing so well. The nausea has been a little less in the last week and I am picking up some energy. We try to walk back and forth to clinic and on my off days we wander around a block or two. I have also been trying to do yoga. I wish I had done yoga before I got sick so I would know what I am doing!! I found a pretty basic routine for the morning. You gotta love the Internet! I haven't read any new books, I should probably do that. I did pick up a travel book from the swap bin the other day on Hawaii and have enjoyed learning about the islands and some of the history. It is definitely on the list of places to go.
There are still some bumps in the road. I just got a call that my cultures from yesterday came back gram positive and I need to have cultures re-done tomorrow. Hopefully it is just contamination again and not an infection. I was supposed to get my central line removed tomorrow but they may delay that based on waiting to see if I need antibiotics.
I met with the Dr. this week and we discussed the low red blood cell issue. Based on the tests they ran before it doesn't look like my immune system is "chewing" them up. So he suspects it is just a slow engraftment for the stuff that makes red blood cells in my marrow. It can happen where one of the three cell lines (white, red, & platelets) lags behind the others. There could also be some suppression of the RBC making process by issues with my kidneys. So...more blood for more tests and my Day 60 biopsy is on Monday which will tell the Doctors a lot. He didn't really get into what happens if it is this or that....of course I want to know every detail and that is not always healthy or helpful. Mom reminds me to leave it in God's hands and focus on the positive of each day. Truly, a positive outlook is as important as the medications they give me!
It is almost the weekend which means seeing the family. That is always my highlight of the week. Last weekend the kids were so upbeat and talkative with stories, it was really a great visit. This weekend we will celebrate Katie's 13th birthday so that will be fun. I wish we could all move into an apartment up here together and homeschool for a semester. Brant's commute wouldn't be that bad....lol.....
Thank you all so much for the nice comments last time on my "Hump Day" post and for blowing up Facebook with comments when I posted it there. Your support really helps keep my spirits up, which can be a real challenge on some days!
Thursday, September 26, 2013
Thursday, September 19, 2013
Day 50!! Hump Day!
Today I am halfway to Day 100. That is a major milestone for transplant patients. FYI - the other milestones are Days 30, 60, and 180. You may have seen it on Facebook, but my very clever donor brother created this video for me. It was a great way to start my day! Thanks George and everyone else who helped by sending him video clips!! You can check it out below.
https://www.youtube.com/watch?v=5Cd9vdV7CMM&feature=player_embedded
Not too much to report. Still doing pretty good. No infections or viruses. My nausea has been slightly better the last two days. I have had a little cough that they think may be from some post nasal drip - could be allergies from George, blame it on the donor, lol.
My other issue is that my red blood cells and hemoglobin will not stay up and I need blood transfusions about once a week or so. I have O+ blood and George has B+ blood. So they think there may be enough of my old immune system hanging around and it is killing off the B+ cells that my new "George marrow" is producing. They are doing some special testing and I should find out more next week. Eventually I should have B+ blood once they let George's system really take over (after immunosuppression). For now, though, they are still giving me O+ blood with my transfusions. Incidentally, I will also appear to be a male if they genetically test me by my blood. A cheek swab, however, would show me to be female. The doctor here said that this quirk of marrow transplants was used in a House episode and one of the CSI shows,too.
I have my next biopsy and re-staging (Day 60) on September 30th. Although it can be nerve-wracking, it will be good to get an update as to how things are going. Thanks for all the continued prayers and support. We are getting there....a day at a time....
https://www.youtube.com/watch?v=5Cd9vdV7CMM&feature=player_embedded
Not too much to report. Still doing pretty good. No infections or viruses. My nausea has been slightly better the last two days. I have had a little cough that they think may be from some post nasal drip - could be allergies from George, blame it on the donor, lol.
My other issue is that my red blood cells and hemoglobin will not stay up and I need blood transfusions about once a week or so. I have O+ blood and George has B+ blood. So they think there may be enough of my old immune system hanging around and it is killing off the B+ cells that my new "George marrow" is producing. They are doing some special testing and I should find out more next week. Eventually I should have B+ blood once they let George's system really take over (after immunosuppression). For now, though, they are still giving me O+ blood with my transfusions. Incidentally, I will also appear to be a male if they genetically test me by my blood. A cheek swab, however, would show me to be female. The doctor here said that this quirk of marrow transplants was used in a House episode and one of the CSI shows,too.
I have my next biopsy and re-staging (Day 60) on September 30th. Although it can be nerve-wracking, it will be good to get an update as to how things are going. Thanks for all the continued prayers and support. We are getting there....a day at a time....
Wednesday, September 11, 2013
Day 42.....This is tedious.....
Has it almost been a week since I posted last?? Guess there just isn't that much exciting to report. I continue to do well with an occasional day of bad nausea...I guess it shows up just so I don't forget what it feels like. It is frustrating, though, because you think you are past certain symptoms and then they reappear. It is definitely not a linear path to recovery! But so far, I have been tracking along pretty steadily.
One of last Thursday's cultures showed up as positive, so on Saturday I got completely cultured checking for infections. That included two bottles at each of four different sites....in addition to some other blood draws. They did my blood count test after all that and surprise, surprise - I needed a transfusion of blood!! It was a nerve-wracking 48 hrs - I must have checked my temperature hourly, but nothing else grew so no infection. They figure the original positive was probably just contamination in the bottle.
Yesterday I had a consult with the ophthalmologist to check for any signs of GVHD. He said my eyes looked good. Today I had a doctor visit and he was pleased with my progress but says it is still early and we need to stay on top of everything. He confirmed that my 30-day biopsy was all good with complete engraftment for marrow, peripheral blood, T-cells, and lymphocytes. Go George... My WBC count is up to 5.6. I haven't seen numbers like that in years. The doctor reminded me that I have healthy bone marrow now. No signs of leukemia but they will be watching closely for that and if it appears they will lower my immunosuppressants and let George's T-cell have at it. "Release the hounds" comes to mind.... I will have another biopsy at Day 60 which is right around the corner. But the best news I got is that he put me on every other day clinic visits...woo hoo!
On the home front (er...hotel front), Mom has been back home this week to be with Dad for a heart procedure. He had it today and it went well and should be home from the hospital tomorrow. My sister came up to take over as Caregiver and we have had a nice week. I also enjoyed visits with Brant & Katie last Saturday, and Chris came up on Sunday. We found a new park with great views over the James River. I went back again yesterday when a friend from Chesapeake came up to visit. It is so nice to get outside as long as I stay out of the sun.
I hope everyone had a chance to remember in some way 9/11 today. It is hard to believe it has been 12 years. I was able to catch the Moment of Silence at the White House and some of the Ground Zero roll call on TV. My thoughts and prayers are with the many families who must still feel such pain and loss.
One of last Thursday's cultures showed up as positive, so on Saturday I got completely cultured checking for infections. That included two bottles at each of four different sites....in addition to some other blood draws. They did my blood count test after all that and surprise, surprise - I needed a transfusion of blood!! It was a nerve-wracking 48 hrs - I must have checked my temperature hourly, but nothing else grew so no infection. They figure the original positive was probably just contamination in the bottle.
Yesterday I had a consult with the ophthalmologist to check for any signs of GVHD. He said my eyes looked good. Today I had a doctor visit and he was pleased with my progress but says it is still early and we need to stay on top of everything. He confirmed that my 30-day biopsy was all good with complete engraftment for marrow, peripheral blood, T-cells, and lymphocytes. Go George... My WBC count is up to 5.6. I haven't seen numbers like that in years. The doctor reminded me that I have healthy bone marrow now. No signs of leukemia but they will be watching closely for that and if it appears they will lower my immunosuppressants and let George's T-cell have at it. "Release the hounds" comes to mind.... I will have another biopsy at Day 60 which is right around the corner. But the best news I got is that he put me on every other day clinic visits...woo hoo!
On the home front (er...hotel front), Mom has been back home this week to be with Dad for a heart procedure. He had it today and it went well and should be home from the hospital tomorrow. My sister came up to take over as Caregiver and we have had a nice week. I also enjoyed visits with Brant & Katie last Saturday, and Chris came up on Sunday. We found a new park with great views over the James River. I went back again yesterday when a friend from Chesapeake came up to visit. It is so nice to get outside as long as I stay out of the sun.
I hope everyone had a chance to remember in some way 9/11 today. It is hard to believe it has been 12 years. I was able to catch the Moment of Silence at the White House and some of the Ground Zero roll call on TV. My thoughts and prayers are with the many families who must still feel such pain and loss.
Thursday, September 5, 2013
Hip Hip Hooray for Good News!!
I am feeling very blessed that I was able to get my biopsy results from the Nurse Practitioner today and that the results were all good!! She informed me that there was no evidence of leukemia in my peripheral blood or in the marrow. She read off a whole bunch of "Negative" responses on my cytogenetic results which apparently is good. And.....my bone marrow shows to be 100% Donor genetic material. Woot Woot!! Way to go George's stem cells! I will probably have this explained to me in more detail at my doctor's appointment next week. But for now - Thank you Lord for so many answered prayers!!
The rest of the check up went pretty well. She sees some evidence of GVHD on my skin but it is not bad and requires no treatment at this time. We discussed strategies to keep my nutrition levels up when I have no appetite and how to keep the pills from causing too much nausea. My only real problem is my kidney function is being impacted by the cyclosporine immunosuppressant drug. They watch my creatinine levels to see how my kidneys are doing and it keeps creeping up. All I can do is drink more, but that is a challenge trying not to feel bloated/nauseous. She said the best thing is a steady but small flow of liquid throughout the day versus drinking large amounts at one time. Maybe I should get one of those hydration packs that the bicyclists and runners use and just walk around with it on all day...lol.
Mom and I have been checking out a few extended stay places and are contemplating a move from the Hospitality House maybe later this month. It will be hard to give up the convenience and community we have here, but it would be nice to have a little more space. I have enjoyed these little outings and am getting a feel for Richmond beyond MCV. We look for little parks (with shade) where we can walk.
I also just finished a book - shock!! I am not a great reader, but as an absentee member of a Book Club back home I try to keep up with what they are reading. The book was The Alchemist and I really enjoyed it (and not just because it was short!!). I found that some of the stuff related to being "in the present" and learning from "wherever it is you are at" really spoke to me. I have been so focused on being homesick and just wanting to get back to Chesapeake that I have maybe been missing some blessings that this time living apart from my family in Richmond can bring. Not sure I have found too many blessings or learned too many lessons yet....I would rather be healthy and with my family...but at least I am looking for them now.
Final funny - did you all know that the group Hanson still tours??? Yesterday they were at the theatre that is a block from the HH. There were actually girls...uhmmm...mostly grown women...camping out to be first in the theatre. Hope it was a rockin' concert!
The rest of the check up went pretty well. She sees some evidence of GVHD on my skin but it is not bad and requires no treatment at this time. We discussed strategies to keep my nutrition levels up when I have no appetite and how to keep the pills from causing too much nausea. My only real problem is my kidney function is being impacted by the cyclosporine immunosuppressant drug. They watch my creatinine levels to see how my kidneys are doing and it keeps creeping up. All I can do is drink more, but that is a challenge trying not to feel bloated/nauseous. She said the best thing is a steady but small flow of liquid throughout the day versus drinking large amounts at one time. Maybe I should get one of those hydration packs that the bicyclists and runners use and just walk around with it on all day...lol.
Mom and I have been checking out a few extended stay places and are contemplating a move from the Hospitality House maybe later this month. It will be hard to give up the convenience and community we have here, but it would be nice to have a little more space. I have enjoyed these little outings and am getting a feel for Richmond beyond MCV. We look for little parks (with shade) where we can walk.
I also just finished a book - shock!! I am not a great reader, but as an absentee member of a Book Club back home I try to keep up with what they are reading. The book was The Alchemist and I really enjoyed it (and not just because it was short!!). I found that some of the stuff related to being "in the present" and learning from "wherever it is you are at" really spoke to me. I have been so focused on being homesick and just wanting to get back to Chesapeake that I have maybe been missing some blessings that this time living apart from my family in Richmond can bring. Not sure I have found too many blessings or learned too many lessons yet....I would rather be healthy and with my family...but at least I am looking for them now.
Final funny - did you all know that the group Hanson still tours??? Yesterday they were at the theatre that is a block from the HH. There were actually girls...uhmmm...mostly grown women...camping out to be first in the theatre. Hope it was a rockin' concert!
Tuesday, September 3, 2013
No Results Yet
Just a quick update to say I haven't gotten any biopsy results yet. Partly because I haven't seen a Dr. or Practitioner yet this week, and partly because it takes a while to get the pathology results completed. The nurses in clinic can't even tell in the system if my results are back. I have been given the day off tomorrow - yeah!! Second "off" day since I was discharged. I will see a Nurse Practitioner on Thursday so maybe I will have some preliminary results at that visit. The two main things they will be looking for are 1) No evidence of Leukemia and 2) My bone marrow chimerism - which will show how much is made up of my brother's cells and how much is my cells that survived chemo. We are praying for 100% donor. Extra credit if you know why they use the word chimerism....
Everything else is going pretty well. My counts are still trending slowly upward and my appetite is improving. No fevers or infections..... I will post again once I have some updates from the biopsy.
Congrats to Brant and the kids for surviving the first day of school....it was a busy one. We had a little help from Ruth and friends, too! Thanks!
Everything else is going pretty well. My counts are still trending slowly upward and my appetite is improving. No fevers or infections..... I will post again once I have some updates from the biopsy.
Congrats to Brant and the kids for surviving the first day of school....it was a busy one. We had a little help from Ruth and friends, too! Thanks!
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