Saturday, May 31, 2014
Day 43 Post Transplant
My sister in-law, Connie came down from Dallas on Tuesday evening through Saturday to sit with me. Jerry had an out of town trip on Friday and Saturday so Nathan and Stephen filled in when Aunt Connie had to leave and Nathan took care of his mom on Tuesday before Connie arrived. We had fun....I am finally feeling "good" more than not!! Which is a huge blessing! You can see the photo below of Connie and me in my wig. I didn't get to see my doctor this week. Bone marrow biopsy results still pending!
Saturday, May 24, 2014
Day +36 First Night Home in my Own Bed
On Friday I got approval to go home (our home on Sandia Cove Ct) for the weekend!
So we headed home at 5pm in what we thought would be horrible Memorial Day Weekend traffic.....and to our surprise there was hardly any traffic!! Like magic! Still can't figure that one out!
Jerry and I slept in our own bed! Yea....life's simple pleasures! We went out to eat at an uncrowded restaurant in the neighborhood after going to Sat. evening mass this evening! The first time to go out in over 6 weeks. Again only a few people in the restaurant which was good for me! Everyone must have left Houston for the long weekend on Friday at noon. I don't know!
I am scheduled to have a bone marrow biopsy on Tuesday. That will give the doctor's more information about how my bone marrow is responding to my new donor cells. I will be going in two days a week for blood checks and my daily infusion and to see the nurse practitioner and pharmacist. On the days I don't go to the hospital, Jerry hooks me up to a portable ball pump device. He's getting really good at his nursing role. If I do say so myself! He also helps me to cover my central venous catheter line at night for my showers! Way to go baby!
Thank you also to all my wonderful friends who brought dinners to me in April and May! They have been such a huge help and stress reducer during my hospitalization and recovery stages!! Thank you so much to Melinda Lynch for organizing and setting up the "Take them a meal" site too!
So we headed home at 5pm in what we thought would be horrible Memorial Day Weekend traffic.....and to our surprise there was hardly any traffic!! Like magic! Still can't figure that one out!
Jerry and I slept in our own bed! Yea....life's simple pleasures! We went out to eat at an uncrowded restaurant in the neighborhood after going to Sat. evening mass this evening! The first time to go out in over 6 weeks. Again only a few people in the restaurant which was good for me! Everyone must have left Houston for the long weekend on Friday at noon. I don't know!
I am scheduled to have a bone marrow biopsy on Tuesday. That will give the doctor's more information about how my bone marrow is responding to my new donor cells. I will be going in two days a week for blood checks and my daily infusion and to see the nurse practitioner and pharmacist. On the days I don't go to the hospital, Jerry hooks me up to a portable ball pump device. He's getting really good at his nursing role. If I do say so myself! He also helps me to cover my central venous catheter line at night for my showers! Way to go baby!
Thank you also to all my wonderful friends who brought dinners to me in April and May! They have been such a huge help and stress reducer during my hospitalization and recovery stages!! Thank you so much to Melinda Lynch for organizing and setting up the "Take them a meal" site too!
Sunday, May 18, 2014
Day +30
Today is the 30th day after my stem cell transplant. I am still staying at Mark's Assisted Living which has been conveniently close (the required 30 minutes or less) from MD Anderson. I am still pumping iron (not really) to try to increase my energy level; nausea and vomiting comes and goes (almost) without notice. My chest x-ray came back with some more questionable areas on Friday. So my doctor wanted me to have another CT scan of the chest on Monday. No fevers though and only an occasional cough. I am also dealing with some swelling and associated pain in my feet and calves as well.
All and all I feel very grateful that I am feeling as well as I do. Not sure why I continue with the nausea, but I will ask the doctor tomorrow. It probably has something to do with all the medications, including 4 antibiotics, I am taking.
My sister in-law, Shirley is my new sitter for the week. Thank you Shirley!!!!! God didn't bless me with any sisters, but he sure blessed me with some of the best sisters in-laws anyone could hope for!!
All and all I feel very grateful that I am feeling as well as I do. Not sure why I continue with the nausea, but I will ask the doctor tomorrow. It probably has something to do with all the medications, including 4 antibiotics, I am taking.
My sister in-law, Shirley is my new sitter for the week. Thank you Shirley!!!!! God didn't bless me with any sisters, but he sure blessed me with some of the best sisters in-laws anyone could hope for!!
Tuesday, May 13, 2014
Doctor is Pleased
So today is day 25 post transplant. I had another chest x-ray last week and it was questionable for a pneumonia vs edema. So Dr. Champlin wanted me to see my infectious disease doctor. I saw both doctor's today. The infectious disease doctor felt like the x-ray looked better than the one I had back in April before the transplant. He feels what is showing up on the x-ray is probably left over edema,
and not a new infection. So that was reassuring. He took me off the anti-fungal infusion I am getting.
Dr. Champlin was pleased that my platelet count was up to the three digits now (126,000). This is higher than it has been in over three years when I was diagnosed with the ITP diagnosis. My white counts are wavering up then down. When I get a neupogen shot it goes up again. But Dr. Champlin feels that the neupogen shots will be needed less and less. The hemoglobin levels are still on the low side, but not low enough to need a transfusion. They are also happy I have been able to stave off any serious infections. No signs of Graft Verses Host Disease (GVHD) yet also. So I feel REALLY blessed!
Nausea is still there, but I can keep small meals and snacks down, although the taste is not back totally. Things couldn't be better!
and not a new infection. So that was reassuring. He took me off the anti-fungal infusion I am getting.
Dr. Champlin was pleased that my platelet count was up to the three digits now (126,000). This is higher than it has been in over three years when I was diagnosed with the ITP diagnosis. My white counts are wavering up then down. When I get a neupogen shot it goes up again. But Dr. Champlin feels that the neupogen shots will be needed less and less. The hemoglobin levels are still on the low side, but not low enough to need a transfusion. They are also happy I have been able to stave off any serious infections. No signs of Graft Verses Host Disease (GVHD) yet also. So I feel REALLY blessed!
Nausea is still there, but I can keep small meals and snacks down, although the taste is not back totally. Things couldn't be better!
Sunday, May 11, 2014
Mother's Day with my Family
I feel so thankful to have the day off from going to the hospital for infusions and blood draws. I spent it with my two sons, Nathan and Stephen, and of course my husband and brother, Mark. Jerry had to hook me up to my two medications that I get by infusion. These are special little hand held size pumps. I stored the pumps in a fanny pouch, as per my nurses suggestion. The only thing is that I ended back up at MD Anderson at about 3:30 pm because we weren't sure the larger pump was working. My nice infusion nurse said I could come by or call if I had any question. Jerry was so nervous. We both called her and then went by the hospital to show her and make sure it was working.
She patiently looked at it (even though she was on her way out at the end of her shift) and told us we did fine. Like parents of a new baby!!! haha!
Everything else going well. Nausea improving daily but still there.
She patiently looked at it (even though she was on her way out at the end of her shift) and told us we did fine. Like parents of a new baby!!! haha!
Everything else going well. Nausea improving daily but still there.
Thursday, May 8, 2014
Mark's Assisted Living
I know it's been a few days since I updated my post. But Jerry has handed the posting baton back to me and I'm not so diligent as my sweet husband!
I was discharged from the hospital on Monday, May 5th, after 24 days in the hospital. I can't tell you how happy I was to spring the hospital scene. Jerry said I was sitting on the edge of the car seat, like a little 5 year old. And I had the window down, soaking in the outside fresh(ish) air. It's amazing the things we take for granted.
My brother Mark lives conveniently close to the Med Center on Braeswood, and graciously opened his home (which I now call Mark's Assisted Living) to Jerry and me and my 24 hour sitter. My sister in-law, Shirley who was scheduled to take the first week became ill at the last minute......Murphy's law....and poor thing was so apologetic, like she had any control over that. Well my other super sister in-laws, Jerry's sisters Claire Katy and Connie from Dallas jumped in to cover the time while Jerry went to work during the days.
The nausea and vomiting has not completely gone away, but has become less severe and less frequent. My energy level is still nowhere near normal. And my list of medications is two pages long, so it has taken me a while to sort through and try to get a system down for when and how each must be taken.....ie several must be on a full stomach, one must be two hours separated from any calcium products, one has to be taken with my eyes crossed....not really just seeing if you are reading the entire blog! haha!
Over the past few days all is going well and my blood counts are improving (especially my white count and absolute neutraphil count) My nurse practitioner has told me that I can take Sunday, Mother's Day off from my daily visits to the hospital. What a great mother's day treat! I will still need to take the two IV meds on Sunday, so they say they will teach me how to use some hand held pump.
Thank you again to my brother for opening his bachelor's pad to me and my plethora of medical supplies. Thank you to all who are and have been bringing meals to our family 2 days a week! To all the people who have sent cards and nice treat bags. And especially all those keeping me in your prayers. Keep them up because they are REALLY working.
I was discharged from the hospital on Monday, May 5th, after 24 days in the hospital. I can't tell you how happy I was to spring the hospital scene. Jerry said I was sitting on the edge of the car seat, like a little 5 year old. And I had the window down, soaking in the outside fresh(ish) air. It's amazing the things we take for granted.
My brother Mark lives conveniently close to the Med Center on Braeswood, and graciously opened his home (which I now call Mark's Assisted Living) to Jerry and me and my 24 hour sitter. My sister in-law, Shirley who was scheduled to take the first week became ill at the last minute......Murphy's law....and poor thing was so apologetic, like she had any control over that. Well my other super sister in-laws, Jerry's sisters Claire Katy and Connie from Dallas jumped in to cover the time while Jerry went to work during the days.
The nausea and vomiting has not completely gone away, but has become less severe and less frequent. My energy level is still nowhere near normal. And my list of medications is two pages long, so it has taken me a while to sort through and try to get a system down for when and how each must be taken.....ie several must be on a full stomach, one must be two hours separated from any calcium products, one has to be taken with my eyes crossed....not really just seeing if you are reading the entire blog! haha!
Over the past few days all is going well and my blood counts are improving (especially my white count and absolute neutraphil count) My nurse practitioner has told me that I can take Sunday, Mother's Day off from my daily visits to the hospital. What a great mother's day treat! I will still need to take the two IV meds on Sunday, so they say they will teach me how to use some hand held pump.
Thank you again to my brother for opening his bachelor's pad to me and my plethora of medical supplies. Thank you to all who are and have been bringing meals to our family 2 days a week! To all the people who have sent cards and nice treat bags. And especially all those keeping me in your prayers. Keep them up because they are REALLY working.
Here is a photo of Mark's house off of S. Braeswood!
There's a separate room for Jerry and I and my sitters too if they need to stay the night!
Sunday, May 4, 2014
Day 16 - Getting Ready for Discharge Tomorrow
Getting Ready for Discharge
Tomorrow is the day I've been waiting for.....busting this joint! I will have been in the hospital for 24 days. That's better than the 30 days the stem cell literature says to anticipate (knowing that all cases are unique and individual) and much better than the May 16th date the admitting nurse gave me when I entered on April 11th. So I am feeling so blessed!
I must say that the nursing care has been excellent and everyone here has been extremely competent and personable. My hair is 99% gone. The photo bellow was taken on Thurs. May 1st, when I was allowed to leave the floor in order to go downstairs to the 6th floor beauty parlor in order to have a major hair cut with my hair about 90% gone. Thanks to my MDS friend Sharon and her sister Dede, I now have a cute new head wrap and a beautiful scarf. I have had to go on-line to purchase some additional styles to get me through until the hair starts growing back!
"Gail getting her hair done before discharge"
Today was a nice Sunday spent with all my boys....Jerry, Stephen and Nathan. My blood counts went down in general, so I needed hemoglobin today as well as a neupogen shot to stimulate my white count to go back up again. It's hard to look outside and not be able to feel the warm sun and dry cool weather all of Houston is enjoying this past week. But tomorrow we will meet again...Can't wait!!
(While on the stem cell unit we are not allowed to leave the 17th or 18th floor where the filtration system is much safer).
Tomorrow, I will also finally be disengaged with my Intravenous lines attached to the IV pole.
Jerry tells me that he's a little envious that after being married to a Czech for over 32 years I have become so attached to a POLE! (Jerry Joke)!!
Tomorrow is the day I've been waiting for.....busting this joint! I will have been in the hospital for 24 days. That's better than the 30 days the stem cell literature says to anticipate (knowing that all cases are unique and individual) and much better than the May 16th date the admitting nurse gave me when I entered on April 11th. So I am feeling so blessed!
I must say that the nursing care has been excellent and everyone here has been extremely competent and personable. My hair is 99% gone. The photo bellow was taken on Thurs. May 1st, when I was allowed to leave the floor in order to go downstairs to the 6th floor beauty parlor in order to have a major hair cut with my hair about 90% gone. Thanks to my MDS friend Sharon and her sister Dede, I now have a cute new head wrap and a beautiful scarf. I have had to go on-line to purchase some additional styles to get me through until the hair starts growing back!
Today was a nice Sunday spent with all my boys....Jerry, Stephen and Nathan. My blood counts went down in general, so I needed hemoglobin today as well as a neupogen shot to stimulate my white count to go back up again. It's hard to look outside and not be able to feel the warm sun and dry cool weather all of Houston is enjoying this past week. But tomorrow we will meet again...Can't wait!!
(While on the stem cell unit we are not allowed to leave the 17th or 18th floor where the filtration system is much safer).
Tomorrow, I will also finally be disengaged with my Intravenous lines attached to the IV pole.
Jerry tells me that he's a little envious that after being married to a Czech for over 32 years I have become so attached to a POLE! (Jerry Joke)!!
Gail and her "Pole"
Friday, May 2, 2014
Days 13 & 14
Day 13-
Diarrhea, nausea and vomiting persist, but I am getting through the day better. Waiting for the culture to come back to see if I have an infection causing the diarrhea or if it's just the chemo residual effect.
I got a hair cut today....I would say it's on it's way out! Need to order some scarfs and hats. There seems to be a distinct draft up there when I don't wear anything on my head :)
Day 14-
More of the same as day 14. No cultures back yet. Attended exercise class today at 2pm and Stephen was able to come observe his old lady in rare deconditioned form!
Doctor still seems pleased and continues to say Monday is D-Day!! I can't wait....the hospital food was good, but now is looking like the same menu each time I pick it up! My complaints were finally heard by my hubby and I convinced him to bring me a McDonald's McGriddle (sans OJ) for breakfast!!
Diarrhea, nausea and vomiting persist, but I am getting through the day better. Waiting for the culture to come back to see if I have an infection causing the diarrhea or if it's just the chemo residual effect.
I got a hair cut today....I would say it's on it's way out! Need to order some scarfs and hats. There seems to be a distinct draft up there when I don't wear anything on my head :)
Day 14-
More of the same as day 14. No cultures back yet. Attended exercise class today at 2pm and Stephen was able to come observe his old lady in rare deconditioned form!
Doctor still seems pleased and continues to say Monday is D-Day!! I can't wait....the hospital food was good, but now is looking like the same menu each time I pick it up! My complaints were finally heard by my hubby and I convinced him to bring me a McDonald's McGriddle (sans OJ) for breakfast!!
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