Well I let my 8th month anniversary come and go on Dec. 18th. I have been harboring a little cough that ended up turning into a worse cough with body aches. So on Friday at around 3pm I took my temperature and realized I had a 100.4 temp and decided I had best contact Toby, Dr. Champlin's PA (physician assistant) She spoke to Dr. Champlin who wanted me to get to the clinic as quickly as possible so that he could examine me and they could run some blood tests, do a nasal flush and start me on some Tamiflu. Unfortunately my car was in the shop and my son and husband were both gone. By the time I found someone to take me, it was closing in on 3:30pm and it would have been hard to make it to MD Anderson on a Friday afternoon before they closed at 5pm.
So Dr. Champlin just called in a prescription for Tamiflu to my local pharmacy and I started the first dose that evening. My fever went up to 100.9 during the night. But by Saturday's second dose, it seemed to kick in pretty quickly because my fever was down to 99.4 on Saturday afternoon and gone by Sunday. I still have a lingering cough. But they want to see me tomorrow morning and will take a chest x-ray and blood tests in the morning and I will see Dr. Champlin.
The only other significant thing that happened since the 7 month mark was that my CT scans showed the infection in my lungs was getting somewhat worse. So Dr. Chemaly, the infectious disease doctor switched one of my antibiotics and will have another CT scan of my chest done in a few weeks. I have another bone marrow biopsy planned for Dec. 29th. As a result of my infection getting worse in my lungs, Dr. Champlin wanted to put my Vidaza chemotherapy injections on hold.
Maybe next month I will have some Christmas pictures to share with everyone. I have a short bob like hairdo, that is filling out, but doesn't seem to be growing in length very fast at all.
As a last request, I would like to ask if there is anyone out there that can make the time to give blood or platelets during the holidays to please give me a call. I have a dear and courageous friend at MD Anderson who was diagnosed with MDS a month before me. We met in the waiting room shortly after I was diagnosed in September, and have encouraged each other on throughout our similar journeys and have stuck together for this year and 3 months process. She has had an unfortunate turn of events and needs platelets daily. I can give you more information about where and how to donate that I don't want to share on my blog. So please call me at 281-814-9507 if you feel like you could do this! She and I would greatly appreciate it!!
I hope everyone has a very Merry Christmas, thanking God for the special gift of His son!
Gail
Sunday, December 21, 2014
Tuesday, November 18, 2014
7 Months Post Stem Cell Transplant- Vaccination Time
Today marks my 7 month mark. I received my vaccinations that a normal 6 month old would receive. Polio, Hepatitis B, DTaP, Hib, and PCV13 (pneumonia). This is important so I can start building up immunities to these diseases. I was unable to receive the MMR vaccine because it is a live vaccine and I my immune system can't handle that. I don't know when and if I will be able to tolerate those. I know that I can not be around babies who have just had a live vaccine either!
I had another CT scan of my chest today. Unfortunately the report showed increased opacity in both right and left upper lobes of the lungs consistent with an infectious process. I saw the infectious disease doctor, Dr. Chemaly, and he wants me to have another bronchoscopy to determine exactly what infection is still going on in my lungs so that he can target it with the appropriate medications.
I am scheduled to have that tomorrow. Hopefully they will determine what the organism(s) are and he can give me the appropriate antibiotics/medication. Keep your fingers crossed!
No other major changes at this time. My blood counts are all in acceptable ranges....white count at 3.7, Platelet count at 135, neutrophil absolute count at 2.43, and Hemoglobin at 12.0
Sorry no new photos this time!
Thanks again for all your support and prayers!
I had another CT scan of my chest today. Unfortunately the report showed increased opacity in both right and left upper lobes of the lungs consistent with an infectious process. I saw the infectious disease doctor, Dr. Chemaly, and he wants me to have another bronchoscopy to determine exactly what infection is still going on in my lungs so that he can target it with the appropriate medications.
I am scheduled to have that tomorrow. Hopefully they will determine what the organism(s) are and he can give me the appropriate antibiotics/medication. Keep your fingers crossed!
No other major changes at this time. My blood counts are all in acceptable ranges....white count at 3.7, Platelet count at 135, neutrophil absolute count at 2.43, and Hemoglobin at 12.0
Sorry no new photos this time!
Thanks again for all your support and prayers!
Friday, October 17, 2014
6 months Post Transplant
Tomorrow will be my 6 month anniversary since my stem cell transplant on April 18th, 2014. I left the hospital on May 5th. My updates are now monthly unless something major happens. I hate to dwell on myself as I am feeling stronger and stronger and there seems to be less significant changes from month to month. My appetite is getting back to normal. I rarely get nauseas, except during my week of chemo. I am still taking a low dose of chemotherapy (Vidaza) 5 days in a row every 28 days. So about once a month I'm feeling blah. But not bad enough that I can't go about my normal routines. The chemo usually drives my white count down so I have to be extra careful about being around sick people during that time. My next dose will start on Monday, Oct. 27th.
The hardest part of the recovery for me at this point is always watching with a hawk eye what I am choosing to do and where I am going to be ending up. I still can't hug people and that is REALLY hard. I LOVE hugs! I have to be very careful with hand washing and sanitizing, wearing my mask in crowds or in the hospital, not standing too close to people or trying to sit farther apart. And of course I have to avoid being around anyone with an active infection. They say October through March is critical for us transplant recipients due to the flu season. A lot of bugs are going around out there already....and then there had to be this Ebola scare!! By the way, my nurse practitioner who meets with Jerry and I regularly about "survivorship" issues explained that I should tell all my close family and acquaintances to get their flu shot!! Not the one that gets swabbed into the nose, but the actual injection kind. (The one in the nose is a live vaccine and that's not good for me either). I am learning that my body is not able to fight an infection like the average person. So should I contract anything, it would likely lead to hospitalization and could be VERY serious. It's a hard concept, because I look like I'm doing so well. I will receive my first 6 month vaccinations soon.
I still have to watch my food choices, but now that I am off the tacrolimus (anti-rejection medication), I am given more leeway about what I can eat. I still have to avoid buffet style meals,
especially fresh vegetables and fruits in that setting. I can't have any raw fish/sushi, or any other raw meats.
And for the rest of my life I will need to be extra careful to wear sunscreen, hats and sun guarded garments when I'm outdoors. If you know me well, you know I LOVE OUTDOORS! I had just started to learn golf before I was diagnosed. Have my new clubs, golf wear and all. I haven't approached my nurse practitioner or doctor about when or if I can get out in that much sun. It seems so hot to wear long sleeves while golfing in June. But where there's a will there is a way. So eventually I'm hoping to golf twilight hours. But I will most likely wait till I get closer to my one year anniversary. The reason for the sun scare is that too much sun exposure can activate a GVHD (graft verses host disease) in my skin. Also my chances of getting a new cancer....melanoma is a big one...are highly increased! I have been following one woman's blog who has received a stem cell transplant at MD Anderson two years ago. They just discovered melanoma on her face. YUK! Kinda Scares Ya! Maybe that's a good thing! At the same time they don't want you to hibernate in your home and become depressed. That is NOT a quality of life unless your called to be a hermit!
I am still receiving physical therapy for what started out as a frozen shoulder. Now my Physical Therapist, Julie, says it's thawing! She's doing a great job and I almost have full range of motion and rotation. There is still pain with certain movements, but it is sooo much better. Maybe I'll remember to take a picture of my PT next time.
My last bone marrow biopsy was on Sept. 29th. The results came back looking really good. Still in remission! Thank the Lord!!! I still have to face the reality that it could come back. According to Dr. Champlin, 33% of the patients who go into stem cell transplant have a recurrence. He also quoted that 33% of those patients will see a cure...and I am still hoping for the last 33%!!
Finally, in September, Jerry and I were able to go to Colorado Springs for his company's executive board meeting. My first long trip in which I ventured out of the state. It was scary to be away from the safety net of my major cancer center. I dutifully wore my mask on the airplane and sanitized everything on the plane near me thoroughly! But everything went well and obviously we made it back without a hitch. The weather was beautiful and scenery was fabulous!
We were able to stay at the beautiful Broadmoor Hotel. Praise God for such beauty He gives us to behold!
These are photos the professional photographer took of us at the Broadmoor.
This is Velma, the nurse who give me my chemo injections!
This is my sister in-law, Claire, who never wants to be photographed. She is such a beautiful person inside and out. She accompanied me to MD Anderson to have my bone marrow biopsy and chemo in September when Jerry was out of town. Don't know why she's photo shy. But I finally twisted her arm to allow me a "photo sharing moment"!
Thank you all so much for my continued support and prayers! It means so much to me that so many people I still run into say that they are keeping me in their prayers. Air hugs back at ya! And by the way...I thank God everyday for all the people he has put in my life who bring me support and love!
The hardest part of the recovery for me at this point is always watching with a hawk eye what I am choosing to do and where I am going to be ending up. I still can't hug people and that is REALLY hard. I LOVE hugs! I have to be very careful with hand washing and sanitizing, wearing my mask in crowds or in the hospital, not standing too close to people or trying to sit farther apart. And of course I have to avoid being around anyone with an active infection. They say October through March is critical for us transplant recipients due to the flu season. A lot of bugs are going around out there already....and then there had to be this Ebola scare!! By the way, my nurse practitioner who meets with Jerry and I regularly about "survivorship" issues explained that I should tell all my close family and acquaintances to get their flu shot!! Not the one that gets swabbed into the nose, but the actual injection kind. (The one in the nose is a live vaccine and that's not good for me either). I am learning that my body is not able to fight an infection like the average person. So should I contract anything, it would likely lead to hospitalization and could be VERY serious. It's a hard concept, because I look like I'm doing so well. I will receive my first 6 month vaccinations soon.
I still have to watch my food choices, but now that I am off the tacrolimus (anti-rejection medication), I am given more leeway about what I can eat. I still have to avoid buffet style meals,
especially fresh vegetables and fruits in that setting. I can't have any raw fish/sushi, or any other raw meats.
And for the rest of my life I will need to be extra careful to wear sunscreen, hats and sun guarded garments when I'm outdoors. If you know me well, you know I LOVE OUTDOORS! I had just started to learn golf before I was diagnosed. Have my new clubs, golf wear and all. I haven't approached my nurse practitioner or doctor about when or if I can get out in that much sun. It seems so hot to wear long sleeves while golfing in June. But where there's a will there is a way. So eventually I'm hoping to golf twilight hours. But I will most likely wait till I get closer to my one year anniversary. The reason for the sun scare is that too much sun exposure can activate a GVHD (graft verses host disease) in my skin. Also my chances of getting a new cancer....melanoma is a big one...are highly increased! I have been following one woman's blog who has received a stem cell transplant at MD Anderson two years ago. They just discovered melanoma on her face. YUK! Kinda Scares Ya! Maybe that's a good thing! At the same time they don't want you to hibernate in your home and become depressed. That is NOT a quality of life unless your called to be a hermit!
I am still receiving physical therapy for what started out as a frozen shoulder. Now my Physical Therapist, Julie, says it's thawing! She's doing a great job and I almost have full range of motion and rotation. There is still pain with certain movements, but it is sooo much better. Maybe I'll remember to take a picture of my PT next time.
My last bone marrow biopsy was on Sept. 29th. The results came back looking really good. Still in remission! Thank the Lord!!! I still have to face the reality that it could come back. According to Dr. Champlin, 33% of the patients who go into stem cell transplant have a recurrence. He also quoted that 33% of those patients will see a cure...and I am still hoping for the last 33%!!
Finally, in September, Jerry and I were able to go to Colorado Springs for his company's executive board meeting. My first long trip in which I ventured out of the state. It was scary to be away from the safety net of my major cancer center. I dutifully wore my mask on the airplane and sanitized everything on the plane near me thoroughly! But everything went well and obviously we made it back without a hitch. The weather was beautiful and scenery was fabulous!
We were able to stay at the beautiful Broadmoor Hotel. Praise God for such beauty He gives us to behold!
Thank you all so much for my continued support and prayers! It means so much to me that so many people I still run into say that they are keeping me in their prayers. Air hugs back at ya! And by the way...I thank God everyday for all the people he has put in my life who bring me support and love!
Thursday, September 18, 2014
5 Months Post Transplant
It's hard to believe that I was receiving my new stem cells 5 months ago today. And even harder to believe that my journey with MDS started one year ago on Sept. 6th. It's been quite a journey which I couldn't have made without the hand of my Lord leading me and giving me strength to overcome each new obstacle. Jerry, Stephen and Nathan have been my cheering squad. And all my friends and family have been my support system. I am feeling extremely blessed.
I feel strong and my side effects are minimal. I continue to receive physical therapy for my frozen right shoulder. At this point my range is almost normal and I mainly need to strengthen the muscles that got so weak by none-use. I will start my third cycle of chemo on September 29th and will have another bone marrow biopsy that day.
Below is a photo from the summer issue of the MD Anderson Messenger magazine. The stem cell floors have a Pole (IV poles) Parade each Easter and this issue discussed the parade and several photos of the patients. The photo below shows Jerry and me at the Parade. I'm the masked and gowned person standing next to Jerry with the pole that says "He is Risen"! I wanted to convey the true meaning of my celebration of Easter! So there you go!
I feel strong and my side effects are minimal. I continue to receive physical therapy for my frozen right shoulder. At this point my range is almost normal and I mainly need to strengthen the muscles that got so weak by none-use. I will start my third cycle of chemo on September 29th and will have another bone marrow biopsy that day.
Below is a photo from the summer issue of the MD Anderson Messenger magazine. The stem cell floors have a Pole (IV poles) Parade each Easter and this issue discussed the parade and several photos of the patients. The photo below shows Jerry and me at the Parade. I'm the masked and gowned person standing next to Jerry with the pole that says "He is Risen"! I wanted to convey the true meaning of my celebration of Easter! So there you go!
Thursday, September 4, 2014
A Wedding in the Family
It was a lovely wedding and was my first big "outing" since the transplant. I even was able to partake in a glass of Champaign and a glass of wine. Since I've been taken off the tacrolimus, I read up on my "do's and don'ts" list and found out that I could actually start enjoying an alcoholic beverage occasionally. No more than the allowed two alcoholic beverages on any given day...I promise I didn't cheat :) I even enjoyed "shaking a leg" out on the dance floor!
I started my second cycle of chemo on Tuesday after Labor Day. Since my last post I have also been receiving physical therapy for what they call a frozen right shoulder. I go out to Katy for the rehab. It is helping tremendously! I almost have full range, but still have difficulty rotating my arm outward. I have been seeing the therapist twice a week.
Tuesday, August 19, 2014
Day 123 Maintenance Chemo Started - Tacrolimus Stops
On my last post I failed to mention that Dr. Champlin started me on a maintenance chemo treatment.
The same drug, Vidaza, I received during the 5 months of "gentle chemo" before I was ready to go to stem cell transplant. My dosage is not as strong now and I receive it through an injection into my stomach. The treatments last for 5 straight days and only happen once per month. This is projected to take place for about a year. The doctor explained that not only will this potentially increase my odds of not having a recurrence of the MDS, but also could help the odds of not developing GVHD (graft versus host disease)...at least some research has indicated this potential benefit.
So I had my treatments the first week of August. I am due to start another set of injections on September 2nd. My primary side effects during that week were the constipation I get secondary to the anti-nausea medicine and some lingering nausea. My stomach has not cleared up all together anyway and the digestive issues, nausea persist. It seems to come in waves with not much predictability.
The doctor discontinued my tacrolimus (the anti-rejection medication) yesterday after a tapering back period. He is still pleased with my blood counts and I'm hoping we will be able to have my central line removed soon. I start physical therapy tomorrow for a pretty sever pain that will not go away in my right shoulder. I first started having it during my hospitalization, but it went away shortly before being discharged. It returned again around a month later and hasn't gone away.
So all else is well. Thanks for the continued support and prayers. I'm getting back to my normal routines and finding it hard to stay within my restrictions placed because of my suppressed immune system:
1. No hugging- except for my immediate family.
2. Lots of careful hand washing and sanitizer.
3. Wear a mask in crowds if you are less than two arms lengths from the person next to you.
4. Hand shaking is ok as long as you sanitize your hands afterwards.
5. No working around dirt or lots of dust --- which means no gardening for now...no renovating our cabin which I had hoped to get back to finishing what I had started before my diagnosis.
6. Traveling out of the city is OK. Airplane travel should be limited to places with a major hospital and always wear a face mask during the flight.
7. Avoid any visitors with any infections or even a runny nose.
8. Foods restrictions continue, but are not nearly as restrictive as before.
9. Sunscreen and protective clothing (hats and long sleeve shirt) when out in the sun for more than a few minutes.
So my return to work as a speech and language pathologist is still not advisable. I'm debating about whether I will go back at all right now. My newly acquired golfing interest is still on hold during this summer heat....I can't imagine wearing long sleeves and a wide brimmed hat and even a game of 9 holes is probably longer than my doctors would advise. Not sure when I will be able to pursue that again....I miss my lady golfing friends at Jersey Meadows :(
I still am unable to be an Extraordinary Minister of Holy Communion at my church. The cleaning and consuming the communal cup of wine and the close proximity with people just isn't advisable yet.
I'm learning a lot of patience and doing a lot of in home projects which never fit into my busy schedule before....so I guess that's what it takes to get an "on the go woman" to slow down!!
The same drug, Vidaza, I received during the 5 months of "gentle chemo" before I was ready to go to stem cell transplant. My dosage is not as strong now and I receive it through an injection into my stomach. The treatments last for 5 straight days and only happen once per month. This is projected to take place for about a year. The doctor explained that not only will this potentially increase my odds of not having a recurrence of the MDS, but also could help the odds of not developing GVHD (graft versus host disease)...at least some research has indicated this potential benefit.
So I had my treatments the first week of August. I am due to start another set of injections on September 2nd. My primary side effects during that week were the constipation I get secondary to the anti-nausea medicine and some lingering nausea. My stomach has not cleared up all together anyway and the digestive issues, nausea persist. It seems to come in waves with not much predictability.
The doctor discontinued my tacrolimus (the anti-rejection medication) yesterday after a tapering back period. He is still pleased with my blood counts and I'm hoping we will be able to have my central line removed soon. I start physical therapy tomorrow for a pretty sever pain that will not go away in my right shoulder. I first started having it during my hospitalization, but it went away shortly before being discharged. It returned again around a month later and hasn't gone away.
So all else is well. Thanks for the continued support and prayers. I'm getting back to my normal routines and finding it hard to stay within my restrictions placed because of my suppressed immune system:
1. No hugging- except for my immediate family.
2. Lots of careful hand washing and sanitizer.
3. Wear a mask in crowds if you are less than two arms lengths from the person next to you.
4. Hand shaking is ok as long as you sanitize your hands afterwards.
5. No working around dirt or lots of dust --- which means no gardening for now...no renovating our cabin which I had hoped to get back to finishing what I had started before my diagnosis.
6. Traveling out of the city is OK. Airplane travel should be limited to places with a major hospital and always wear a face mask during the flight.
7. Avoid any visitors with any infections or even a runny nose.
8. Foods restrictions continue, but are not nearly as restrictive as before.
9. Sunscreen and protective clothing (hats and long sleeve shirt) when out in the sun for more than a few minutes.
So my return to work as a speech and language pathologist is still not advisable. I'm debating about whether I will go back at all right now. My newly acquired golfing interest is still on hold during this summer heat....I can't imagine wearing long sleeves and a wide brimmed hat and even a game of 9 holes is probably longer than my doctors would advise. Not sure when I will be able to pursue that again....I miss my lady golfing friends at Jersey Meadows :(
I still am unable to be an Extraordinary Minister of Holy Communion at my church. The cleaning and consuming the communal cup of wine and the close proximity with people just isn't advisable yet.
I'm learning a lot of patience and doing a lot of in home projects which never fit into my busy schedule before....so I guess that's what it takes to get an "on the go woman" to slow down!!
Sunday, August 10, 2014
A Fun Time with Old Friends
I am purposely not reporting on any thing about my illness. This weekend was about getting away from my Cancer struggles and taking time to have fun and laugh with old friends. I am so thankful that I am feeling up to these visits now! Four of my old speech buddies from Austin were able to come to Houston for an overnight visit at my house. We all worked together at what used to be called Healthcare Rehab Center in Austin. It now goes by the name of "Texas Neuro Rehab" It was an unusual place in that we had some very difficult patients (many with traumatic brain injury and some were adolescence with severe emotional and psychological issues) to work with,,,,many were patients that were sent to our facility because no other facility in their state could handle them. These patients call this facility home for an extended period of time.
This group of about 10 speech and language pathologist have stayed connected for some 25 plus years. Most of us didn't have children at the time we started working together and now many of our kids are out of college and leaving home! Two of our group have passed away. But there has always been a bond between us that was unexplainable. We just connected, and have stayed connected although many of us have been separated by distance and work environments for numerous years. Here are four of my good friends from Austin and the surrounding area: From left to right:
Cydney, Diana Kim and Barbara. I enjoyed the weekend guys...till our next "girls weekend"!
Sunday, August 3, 2014
Day 107 - Bone Marrow Biopsy Results
On Tuesday I met with the Infectious Disease Doctor, Doctor Chemaly. He reviewed the results of my CT scan of the chest that I had done on Monday. And though the spots on my left lung showed improvement, the spot on my right lung looks about the same or possibly a little worse. Dr. Chemaly said this infection, called MAI, is something many people are exposed to. It just takes someone like me with a suppressed immune system a long time to get rid of. He said it could take up to a year or two. So I am staying on the antibiotics for now.
Thursday I met with Dr. Champlin. He was very pleased with the results of the bone marrow biopsy as well as my blood counts. He is tapering down the tacrolimus (anti-rejection medication) to one time a day. When I asked the intern if the biopsy indicated that I was in remission, he said "Yes".
I realize though that the fact that you're
in remission does not mean I am out of danger for the disease returning, it only means that there is no sign of disease at this time. Praise God!
This week I enjoyed a visit from my old college roommate (May) and her husband (David). We lived together my senior year along with my good friend Becky. May moved to the Toronto area and it's been about 30 years since we have seen each other. So I made sure they got their fill of my Texas twang and had some good Tex-Mex food at Lupe Tortilla's.
Thursday I met with Dr. Champlin. He was very pleased with the results of the bone marrow biopsy as well as my blood counts. He is tapering down the tacrolimus (anti-rejection medication) to one time a day. When I asked the intern if the biopsy indicated that I was in remission, he said "Yes".
I realize though that the fact that you're
in remission does not mean I am out of danger for the disease returning, it only means that there is no sign of disease at this time. Praise God!
This week I enjoyed a visit from my old college roommate (May) and her husband (David). We lived together my senior year along with my good friend Becky. May moved to the Toronto area and it's been about 30 years since we have seen each other. So I made sure they got their fill of my Texas twang and had some good Tex-Mex food at Lupe Tortilla's.
Sunday, July 20, 2014
Day 93 Things are Plugging Along
With one week to go before celebrating my first 100 days, things are looking great. I am still taking quite a few medications including 3 different antibiotics, an anti fungal and an antiviral. Next week I will have a repeat CT scan of my chest to see if that dad gum organism is still growing in my lungs. The last chest X-ray still showed some opacities in the lungs. On Tuesday I will meet with my infectious disease doctor, Dr. Chemaly, to see if I can start getting off some of the antibiotics at least.
Last count, I am taking 12 different medications and 19 different pills each day! Ugh...my stomach still doesn't know how to digest all this at times.
I met a woman in the waiting room this week at MD Anderson who had a diagnosis of MDS initially.
She had a stem cell transplant almost 2 years ago. At about 18 months after the Stem Cell transplant she had a bone marrow biopsy that showed the MDS had returned. The MDS progressed into AML after only about a month later (I may have details a little confused) and was not responding to the chemo drug Dacogen. It brought to light the fact that we all need to support each other through prayers, and also that we just need to be thankful for each day God gives us here. No matter what your health is like, there are no guarantees!
I have been lucky to have my next door neighbor, Amy, as my "sitter next door"! We checked in with each other regularly through out the day and ran errands together. Amy went to MD Anderson with me on Wednesday and My sister in-law, Claire, was able to go to my PA appointment with me on Thursday. I am so grateful for all the help I have received during these last 93 days!
Last count, I am taking 12 different medications and 19 different pills each day! Ugh...my stomach still doesn't know how to digest all this at times.
I met a woman in the waiting room this week at MD Anderson who had a diagnosis of MDS initially.
She had a stem cell transplant almost 2 years ago. At about 18 months after the Stem Cell transplant she had a bone marrow biopsy that showed the MDS had returned. The MDS progressed into AML after only about a month later (I may have details a little confused) and was not responding to the chemo drug Dacogen. It brought to light the fact that we all need to support each other through prayers, and also that we just need to be thankful for each day God gives us here. No matter what your health is like, there are no guarantees!
I have been lucky to have my next door neighbor, Amy, as my "sitter next door"! We checked in with each other regularly through out the day and ran errands together. Amy went to MD Anderson with me on Wednesday and My sister in-law, Claire, was able to go to my PA appointment with me on Thursday. I am so grateful for all the help I have received during these last 93 days!
Tuesday, July 15, 2014
Day 88 Survivor Information
As I am back to my home, all the day to day issues of REAL LIFE are now cropping up and need to be tended to. My schedule is backing up and I don't get around to posting on my blog till late at night. Then I am exhausted and guess what....I fall asleep. I can't seem to get around to posting on my blog as often as I would like.
My last doctor visit went well. The liver counts are down which is good. They started to go up when the doctor took me off the Tacrolimus (anti-rejection med) before I was suppose to have a "donor lymphosite injection" or "DLI" about 6 weeks ago. The DLI fell through, but while I was off the Tacrolimus I started to have elevated liver enzymes which was a sign I was getting GVHD of the liver. I never had a biopsy of the liver, but my doctor said he thought I had it in the liver. So they have been watching the liver counts closely and it has gradually been going down toward the normal range. That is good. All my other blood counts (hemoglobin, platelets, white counts and absolute neutrophil count) are staying relatively steady and in the normal to slightly low range. The doc and Toby, my PA are very pleased!
Jerry and I attended a "Stem Cell Transplant Survivorship Program" meeting with an Advanced Nurse Practitioner. We learned what to expect from day 100 to 2 years post transplant. The major things I learned is 1.) As long as I stay on the anti-rejection drug (Tacrolimus) my donor's healthy immune system is being smoldered from working effectively. This is being done so that I won't obtain a ranging Graft Versus Host Disease, but it also means that I have to be extra cautions with what I eat, staying away from sick people (especially come flu season in October), etc. because my NEW immune system is not up to par yet either in spite of my white count looking pretty good.
2.) I am at higher risk for getting GVHD of the skin if I get too much sun. I will always have to protect my skin for the rest of my life. I wasn't one to do that in the past.3.) The tacrolimus should continue till about 6 mos. post transplant, but that depends on everyone's own status. 4.) I could get GVHD for the rest of my life....ugh....but my chances significantly diminish past my 2 year mark.
5.) After day 100 I can start eating more fresh fruits and vegetables, except berries, strawberries and cherry tomatoes, buffet type meals and some other less significant meals. I still need to wash and peal the skins on many things very carefully. Yea I can finally eat a salad!!! 6.) I don't need to wear the mask all the time. I need to carry extra masks and only need to wear them if I am within two arms lengths of people or on an airplane flight. 7.) I still need to notify a doctor or head to the ER if I get a fever above 100.3 degrees or any unusual symptoms.
I am thankful for the little things this transplant has brought me including: longer and stronger nails than I have ever had in my life! Must be all the potassium and magnesium I take. The Tacrolimus depletes those elements in my body so I have to stay on those pills until I get off the Tacrolimus.
I also spend minimal time with hair care...washing the sprouts (I call my new growth) and putting on the wig or turban is pretty easy! I learned at the Survivorship Workshop that the whole body tan I walked out of the hospital with is called a "chemo tan". Darn, I had been pretending that it was due to the cells from my donor and that maybe he was a "Latin Lover"!! I have a tan even "where the sun don't shine" if you know what I mean!
The past two weeks (after my brother's funeral) were spent with my dear, sweet Aura. Aura was Greg's primary caregiver for almost a year and a half. Since she was out of work and my assigned sitter became ill, she gladly agreed to come sit with me for two weeks during the day! I think it was therapeutic for us both to spend the weeks reminiscing about our dear Greg. Aura and I jetted about Houston taking Greg's left over medical supplies to the Houston Food Bank and his wheelchair we donated to St. Dominic's Center. Medical Bridges is a neat organization that uses unopened medical supplies that can't be used here in the U.S. and sends them to impoverished countries. Great idea! They picked up Greg's remaining supplies today... Tracheostomy supplies, unopened peritoneal cleaners and diaper creams, etc.
Below is two photos of Aura and Me. One as we donated Greg's wheelchair to St. Dominic's Village.
My last doctor visit went well. The liver counts are down which is good. They started to go up when the doctor took me off the Tacrolimus (anti-rejection med) before I was suppose to have a "donor lymphosite injection" or "DLI" about 6 weeks ago. The DLI fell through, but while I was off the Tacrolimus I started to have elevated liver enzymes which was a sign I was getting GVHD of the liver. I never had a biopsy of the liver, but my doctor said he thought I had it in the liver. So they have been watching the liver counts closely and it has gradually been going down toward the normal range. That is good. All my other blood counts (hemoglobin, platelets, white counts and absolute neutrophil count) are staying relatively steady and in the normal to slightly low range. The doc and Toby, my PA are very pleased!
Jerry and I attended a "Stem Cell Transplant Survivorship Program" meeting with an Advanced Nurse Practitioner. We learned what to expect from day 100 to 2 years post transplant. The major things I learned is 1.) As long as I stay on the anti-rejection drug (Tacrolimus) my donor's healthy immune system is being smoldered from working effectively. This is being done so that I won't obtain a ranging Graft Versus Host Disease, but it also means that I have to be extra cautions with what I eat, staying away from sick people (especially come flu season in October), etc. because my NEW immune system is not up to par yet either in spite of my white count looking pretty good.
2.) I am at higher risk for getting GVHD of the skin if I get too much sun. I will always have to protect my skin for the rest of my life. I wasn't one to do that in the past.3.) The tacrolimus should continue till about 6 mos. post transplant, but that depends on everyone's own status. 4.) I could get GVHD for the rest of my life....ugh....but my chances significantly diminish past my 2 year mark.
5.) After day 100 I can start eating more fresh fruits and vegetables, except berries, strawberries and cherry tomatoes, buffet type meals and some other less significant meals. I still need to wash and peal the skins on many things very carefully. Yea I can finally eat a salad!!! 6.) I don't need to wear the mask all the time. I need to carry extra masks and only need to wear them if I am within two arms lengths of people or on an airplane flight. 7.) I still need to notify a doctor or head to the ER if I get a fever above 100.3 degrees or any unusual symptoms.
I am thankful for the little things this transplant has brought me including: longer and stronger nails than I have ever had in my life! Must be all the potassium and magnesium I take. The Tacrolimus depletes those elements in my body so I have to stay on those pills until I get off the Tacrolimus.
I also spend minimal time with hair care...washing the sprouts (I call my new growth) and putting on the wig or turban is pretty easy! I learned at the Survivorship Workshop that the whole body tan I walked out of the hospital with is called a "chemo tan". Darn, I had been pretending that it was due to the cells from my donor and that maybe he was a "Latin Lover"!! I have a tan even "where the sun don't shine" if you know what I mean!
The past two weeks (after my brother's funeral) were spent with my dear, sweet Aura. Aura was Greg's primary caregiver for almost a year and a half. Since she was out of work and my assigned sitter became ill, she gladly agreed to come sit with me for two weeks during the day! I think it was therapeutic for us both to spend the weeks reminiscing about our dear Greg. Aura and I jetted about Houston taking Greg's left over medical supplies to the Houston Food Bank and his wheelchair we donated to St. Dominic's Center. Medical Bridges is a neat organization that uses unopened medical supplies that can't be used here in the U.S. and sends them to impoverished countries. Great idea! They picked up Greg's remaining supplies today... Tracheostomy supplies, unopened peritoneal cleaners and diaper creams, etc.
Below is two photos of Aura and Me. One as we donated Greg's wheelchair to St. Dominic's Village.
Saturday, July 5, 2014
Day 78 - Dealing with the Death of my little brother!
Many of you were wondering why I haven't entered any new posts on my blog lately. Well last week was a difficult week. My little brother, Greg, passed away on Tuesday June 24th at the age of 54. He had suffered a stroke almost 3 years ago and since that time he required tube feedings and a tracheostomy tube, and was unable to walk. Communications were limited to smiles and a gleam in his eyes, and some other facial expressions and some limited hand movements. The week preceding his death Greg had contracted an infection leading to double pneumonia. Being the baby of the family and born with Down Syndrome, Greg was very special to me growing up and I always felt like I was his protector. But God was calling him home and I couldn't stand in the way. It's going to take a while for my heart to heal this loss, but I am consoled by the thoughts of his complete happiness without the limitations of his stroke or any other ailments. He is now able to do what he enjoyed most.....loving others....dancing and singing! I feel so grateful for having been able to learn first hand from the school of "Greggy". 1. That is you love EVERYONE, especially those who can get around your physical limitations to be able to reach out and hug you back! 2. You live life happy for each day. 3. You don't sweat the things you can't control 4. You try your best and claim each accomplishment as a HUGE success. and 5. You love your God for everything He gives you and you reach out to Him in all things big and small. Greg would not eat a meal before saying grace and until his memory started failing, he prayed each night before bed.
Besides my brother, Greg, I am feeling grateful today for many other things.... I am extremely thankful for my health and healing process. I feel indebted to my donor who donated the stem cells that allowed me to live and be healthy enough to write this post. I am so blessed to have a beautiful loving family and friends and support system...and for my brother Mark for allowing me to stay with him for almost two months. And most of all I am feeling blessed for God, who is teaching me that I will never be in control of my life circumstances. Instead of striving for a safe and predictable lifestyle I always need to be seeking a closer relationship with Him and his son, Jesus. Only then will my life be a glorious adventure!
Since my last post, Jerry and I moved home to our house permanently. I only go to see the doctor and get blood draws once a week. I no longer need infusions of any kind, but still take a boat load of oral medications. The medications still give me stomach and digestive problems, but only intermittently. I was given permission to make a one day trip 116 miles to Yoakum, TX in order to bury Greg.
Below are some photo memories of my sweet brother Richard Greg New.
Besides my brother, Greg, I am feeling grateful today for many other things.... I am extremely thankful for my health and healing process. I feel indebted to my donor who donated the stem cells that allowed me to live and be healthy enough to write this post. I am so blessed to have a beautiful loving family and friends and support system...and for my brother Mark for allowing me to stay with him for almost two months. And most of all I am feeling blessed for God, who is teaching me that I will never be in control of my life circumstances. Instead of striving for a safe and predictable lifestyle I always need to be seeking a closer relationship with Him and his son, Jesus. Only then will my life be a glorious adventure!
Since my last post, Jerry and I moved home to our house permanently. I only go to see the doctor and get blood draws once a week. I no longer need infusions of any kind, but still take a boat load of oral medications. The medications still give me stomach and digestive problems, but only intermittently. I was given permission to make a one day trip 116 miles to Yoakum, TX in order to bury Greg.
Below are some photo memories of my sweet brother Richard Greg New.
Friday, June 20, 2014
Day 63 or 9 weeks Post Transplant
It's was a bitter sweet moment because I had to say goodbye to Jill (my pharmacist) and Agnes (my advanced nurse practitioner) and Tracy (my primary nurse practitioner) who would see me each visit to ask about my symptoms, check me out, review my blood work, make changes in my medication and answer any questions I had. I told them they were like my security blanket! The picture above shows me ringing the bell that typically is rung by patients on their last chemo treatment. However, since that happened in the hospital, my nurses felt I should ring it today!! Now I only come in once a week to get a blood check and to see Dr. Champlin in the stem cell clinic.
They say the longer you stay together the more you start looking like your spouse.....but this beats all!!!
Sunday, June 15, 2014
Day 58- June 15, 2014
Not many medical changes occurred this week from the week before. I was taken off one pill, but another two were added back onto my daily regimen. Ugh....my stomach just keeps complaining....bouts of intermittent nausea and diarrhea started back this week. Oh well, it's all part of the recovery. Overall, the doctor's and nurses are still watching me closely for medical symptoms,
especially signs of GVHD. There are some elevated blood levels that indicate I may have something inflaming my liver. This could be GVHD or it could be one of the meds I'm on. Nothing alarming at
this time though.
My sitter for Mon- Thurs. of this last week was Shirley again....Sweet Shirley. The photo below shows Shirley and her dream car! Aimee Ferrell then offered to fill in for Shirley on Friday when I went to the hospital for my re-check. It was so fun to be able to visit with Aimee and we even had an opportunity to go out to lunch ....what a treat!! Also this week I was able to fit in a visit with Ann Biro and Caroline Bernard (SHE group) whom we met at mass on Thursday morning. What a surprise treat that Ann invited us all over to her house for a delicious breakfast and visited with Caroline who happened to be visiting from Washington D.C.
Saturday, June 7, 2014
Day 50 June 6th
I learned this week that my stem cell report looks good with signs of nice engraphment. I also learned from Dr. Champlin that they had to cancel my DLI (Donor Lymphocite Injection) scheduled for next Friday. For unknown reasons the donor T-cells that were reserved at the time of the transplant were not growing correctly and I won't be able to proceed with a clinical trial with a new medication for GVHD. I was a little apprehensive about the pending procedure that's goal was to give me a small degree of the GVHD but could have given me the raging type of GVHD as well. So I am taking the outlook that it was God's plan for me to NOT have this at this time!
Another thing that REALLY upsets me is that I was told by my doctor that I need to wait another month before I can safely visit with my baby brother, Greg who lives at a nursing home. I miss him sooo much and I love giving him kisses and receiving his kisses back!
I continue to be grateful for the blessing of my healing and feeling so well this soon after my transplant. Praise God!
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!!
Wednesday, April 30, 2014
Day 12
Wednesday, April 30
Good news the past couple of days... the new cells have begun engrafting!
Monday (Day 10) was by far one of Gail's worst days in the hospital. She awoke at about 3am feeling poor. Within about 30 minutes she began to experience difficulty breathing, tightness in her chest and her lungs started filling with fluid. /the nurses responded quickly and notified the night on-call doctors who quickly gave her Lasix to flush the fluids out of her body. After all the tests were performed....chest X-ray, EKG, blood enzymes etc.the doctor said that it appears she had what is called a "cytokine storm". Not really sure how to define that in the blog (it's one of those things you can google), but basically with the white cells starting to engraft, it created some type of dangerous "storm" in her body. Monday she continued feeling run down and sleepy.
Yesterday, Gail's white cell count did indeed move up and she felt really great all day.Today the white cell count jumped even more, but unfortunately the feeling great part did not continue. But she continues to make really good progress.
If everything continues to proceed as it is, she will likely be discharged this coming Monday! They have even hinted at the possibility that she could even be released as early as Friday (her original discharge date was the 16th). But as has been the case all along, this is a day-to-day process and not one where you can get too far ahead of yourself. Something is always changing!
Now that they have moved the discharge date to early next week, Jerry has had to take a couple of classes on how to take care of her central veinous catheter. His test is tomorrow... and hopefully he will know what he is doing!
Monday, April 28, 2014
Day 10
Monday, April 28
Today was a very difficult day for Gail. She woke up around 3:00 am having difficulty breathing. Fluid building up around her lungs was the problem. She was put on oxygen, given a diuretic, had a chest x-ray and was given an EKG.This was all done before 6:00 am! Respiratory therapy was started early in the morning and Gail remained on oxygen throughout the day.
Things started settling down for Gail within a few hours, and by the time her doctor made his rounds around 9:30, she was breathing a whole lot better and the EKG and x-ray came back OK. When her doctor checked her breathing, he asked how she was doing. She said she felt really rotten... his response was "good, you are doing really good". It was our understanding this is all part of the process as you move toward engraphment.
Gail's platelet count was low as well so she received platelets in the early afternoon. A dosage of Benadryl precedes the platelet transfusion, so Gail spent most of the afternoon very drowsy.
It is definitely not an easy process... so thanks for all the kind words and prayers!
Today was a very difficult day for Gail. She woke up around 3:00 am having difficulty breathing. Fluid building up around her lungs was the problem. She was put on oxygen, given a diuretic, had a chest x-ray and was given an EKG.This was all done before 6:00 am! Respiratory therapy was started early in the morning and Gail remained on oxygen throughout the day.
Things started settling down for Gail within a few hours, and by the time her doctor made his rounds around 9:30, she was breathing a whole lot better and the EKG and x-ray came back OK. When her doctor checked her breathing, he asked how she was doing. She said she felt really rotten... his response was "good, you are doing really good". It was our understanding this is all part of the process as you move toward engraphment.
Gail's platelet count was low as well so she received platelets in the early afternoon. A dosage of Benadryl precedes the platelet transfusion, so Gail spent most of the afternoon very drowsy.
It is definitely not an easy process... so thanks for all the kind words and prayers!
Sunday, April 27, 2014
Day 9
Sunday, April 27
Gail spent a nice Sunday with visitors. It started with a visit with her brother Mark; also sisters-in-law Diane and Pam came by this afternoon. Stephen and his good friend from college, Daniel, came to donate platelets and blood and spent some time with her this afternoon as well.
She continues to do all her walking and breathing exercises that will contribute to the healing process. One of the resident doctors who also saw Gail several times in clinic, stopped by today and commented that she is doing really well. She continues to hang tough despite dealing with a lot of pain and discomfort.
Add to the fact that Pope John XXlll and Pope John Paul ll today were added to the Litany of Saints... and it becomes a really good day!
Gail spent a nice Sunday with visitors. It started with a visit with her brother Mark; also sisters-in-law Diane and Pam came by this afternoon. Stephen and his good friend from college, Daniel, came to donate platelets and blood and spent some time with her this afternoon as well.
She continues to do all her walking and breathing exercises that will contribute to the healing process. One of the resident doctors who also saw Gail several times in clinic, stopped by today and commented that she is doing really well. She continues to hang tough despite dealing with a lot of pain and discomfort.
Add to the fact that Pope John XXlll and Pope John Paul ll today were added to the Litany of Saints... and it becomes a really good day!
Saturday, April 26, 2014
Day 7 & 8
Friday, April 25
Not that great a day, rather one filled with a good deal of nausea, vomiting, etc. But on a positive note, Gail was able to see a Physical Therapist who was able to relieve muscle spasms in her right shoulder; that allowed for a much needed better night sleep. Neupogen shots started today, which are meant to help stimulate the growth of white cells. Gail’s white count has remained at zero since the transplant (which is expected). Stephen joined his mom for dinner this evening.
Saturday, April 26
A better day overall... food staying down was a big reason for that. Gail had a nice, long enjoyable visit with her speech therapist friend Liz Aussenberg. Also an occupational therapist stopped by and gave her some good advice on keeping her shoulder limber to prevent the spasms from returning. Today was Day 2 of the Neupogen shots. Tonight, Nathan enjoyed dinner with his mom.
Not that great a day, rather one filled with a good deal of nausea, vomiting, etc. But on a positive note, Gail was able to see a Physical Therapist who was able to relieve muscle spasms in her right shoulder; that allowed for a much needed better night sleep. Neupogen shots started today, which are meant to help stimulate the growth of white cells. Gail’s white count has remained at zero since the transplant (which is expected). Stephen joined his mom for dinner this evening.
Saturday, April 26
A better day overall... food staying down was a big reason for that. Gail had a nice, long enjoyable visit with her speech therapist friend Liz Aussenberg. Also an occupational therapist stopped by and gave her some good advice on keeping her shoulder limber to prevent the spasms from returning. Today was Day 2 of the Neupogen shots. Tonight, Nathan enjoyed dinner with his mom.
Thursday, April 24, 2014
Day 6
Thursday, April 24
Gastrointestinal side effects and pain in the right shoulder continue to be the main sources of discomfort. But all in all, still doing well in the scheme of things.
Several people requested information on donating blood and platelets. You can find everything you need to know atwww.mdanderson.org/bloodbank or by calling (713) 792-7777.
However some quick points:
-For Gail to get credit for someone giving on her behalf (give them Gail's name when filling out the paper work), you have to give at one of the three MDA blood centers; two are in the MD Anderson complex (the Main Hospital and the Mays Clinic) and the third is located at 2555 Holly Hall, 77054. Holly Hall is the best location to donate to avoid the parking issues (you can park at the front door).
-You can only donate blood every 2 months, but platelets can be donated every 2 days
-Donating whole blood takes about 30-45 minutes; platelets can take up to two hours
-You must eat within four hours of donating
-You must have a valid picture ID
-If you are donating platelets only, you must be off all Ibuprofen products, Aspirin, Motrin, Advil, Nuprin, Aleve and herbal products containing Garlique, Ginseng, Gingko or Ginger for 48 hours prior to donation
Thank you in advance if you are able to give. Your donating gives credit to Gail if/when she needs platelets; but as mentioned yesterday it can help many others as well.
Gastrointestinal side effects and pain in the right shoulder continue to be the main sources of discomfort. But all in all, still doing well in the scheme of things.
Several people requested information on donating blood and platelets. You can find everything you need to know atwww.mdanderson.org/bloodbank or by calling (713) 792-7777.
However some quick points:
-For Gail to get credit for someone giving on her behalf (give them Gail's name when filling out the paper work), you have to give at one of the three MDA blood centers; two are in the MD Anderson complex (the Main Hospital and the Mays Clinic) and the third is located at 2555 Holly Hall, 77054. Holly Hall is the best location to donate to avoid the parking issues (you can park at the front door).
-You can only donate blood every 2 months, but platelets can be donated every 2 days
-Donating whole blood takes about 30-45 minutes; platelets can take up to two hours
-You must eat within four hours of donating
-You must have a valid picture ID
-If you are donating platelets only, you must be off all Ibuprofen products, Aspirin, Motrin, Advil, Nuprin, Aleve and herbal products containing Garlique, Ginseng, Gingko or Ginger for 48 hours prior to donation
Thank you in advance if you are able to give. Your donating gives credit to Gail if/when she needs platelets; but as mentioned yesterday it can help many others as well.
Wednesday, April 23, 2014
Day 5
Wednesday, April 23
Everything continues to move along in the way that we were told from the outset... Gail continues to feel a bit lousy, her white cells are at 0 and today she needed platelets. All according to plan... so we guess that is a good thing.
We were told that although Gail needed platelets today, because platelets were at a crisis shortage in the hospital, they were being very selective on who received them. Because Jerry had stop by the Blood Center to donate them yesterday, Gail was able to receive hers. While patients at MDA Anderson have long-term needs for all blood components, platelet donors are especially valuable. Over 500 units of platelets are used daily by the patients at MDA.
If giving blood and/or platelets is something you are able to do, you would be helping out many, many grateful people.
Today, the Jewish Denominational Coordinator at MDA (a friend of one of Gail's good Speech Pathology friends) stopped by to visit. Not only did Hope give Gail a beautiful Jewish blessing, but they had a wonderful conversation on our two faiths. She has been involved in this ministry for many, many years and her knowledge and perspective were very enlightening.
Another day closer...
Everything continues to move along in the way that we were told from the outset... Gail continues to feel a bit lousy, her white cells are at 0 and today she needed platelets. All according to plan... so we guess that is a good thing.
We were told that although Gail needed platelets today, because platelets were at a crisis shortage in the hospital, they were being very selective on who received them. Because Jerry had stop by the Blood Center to donate them yesterday, Gail was able to receive hers. While patients at MDA Anderson have long-term needs for all blood components, platelet donors are especially valuable. Over 500 units of platelets are used daily by the patients at MDA.
If giving blood and/or platelets is something you are able to do, you would be helping out many, many grateful people.
Today, the Jewish Denominational Coordinator at MDA (a friend of one of Gail's good Speech Pathology friends) stopped by to visit. Not only did Hope give Gail a beautiful Jewish blessing, but they had a wonderful conversation on our two faiths. She has been involved in this ministry for many, many years and her knowledge and perspective were very enlightening.
Another day closer...
Monday, April 21, 2014
Day 3
Monday, April 21
We were told that starting Day 3 Gail could expect to start feeling the effects of the chemo and all the other medications that she would be receiving. They had that right! She did not sleep well last night and spent most of the day trying to be as still as she could, lest she become nauseas. Before Jerry left for the evening, she did feel good enough to get in her mile walk, slowly but surely.
Further blog updates to come, but we will report as there is more to share. Thanks again for all the prayers!
We were told that starting Day 3 Gail could expect to start feeling the effects of the chemo and all the other medications that she would be receiving. They had that right! She did not sleep well last night and spent most of the day trying to be as still as she could, lest she become nauseas. Before Jerry left for the evening, she did feel good enough to get in her mile walk, slowly but surely.
Further blog updates to come, but we will report as there is more to share. Thanks again for all the prayers!
Sunday, April 20, 2014
Day 2
Easter Sunday, April 20
Hope everyone had a very Happy Easter. It was a nice, calm day on the 17th floor. Gail enjoyed the day with Jerry and the boys coming to visit. At 2:00 the Transplant Floors, 17th and 18th held their Annual Easter Pole Parade. It was fun to see so many patients, with family members, enjoying themselves!
Picture 2 - The Pole Parade!
Hope everyone had a very Happy Easter. It was a nice, calm day on the 17th floor. Gail enjoyed the day with Jerry and the boys coming to visit. At 2:00 the Transplant Floors, 17th and 18th held their Annual Easter Pole Parade. It was fun to see so many patients, with family members, enjoying themselves!
Picture 1 - Gail resting prior to the Pole Parade
Picture 2 - The Pole Parade!
Saturday, April 19, 2014
Day 1
Fairly uneventful day today... No news is good news!
The photo is of Gail's nurse Nicole administering the T cells yesterday.
The photo is of Gail's nurse Nicole administering the T cells yesterday.
Friday, April 18, 2014
Day 0
Good Friday, April 18
It's done! The transplant/transfusion began at 11:00 this morning and was completed about 45 minutes later.Considering the magnitude of what the transplant means to Gail, the procedure itself was quite uneventful. Stephen, Nathan, Jerry and Gail's brother Mark all attended her "new birth". With the procedure, Gail will have all new cells in her bone marrow; her new blood type will go from O+ to A+.
A very, very special thank you to Gail's nurse for today, Nicole. She was in the room the entire time of the transplant, and answered many questions, from many different angles, from many different people. And how do you say thank you to someone who has given you the opportunity for a new life... that being Gail's donor. We all will be forever grateful!
Gail recovered very well from the rough day yesterday. When Jerry arrived at the hospital about 8:45, she had already started her mile walk. With the procedure, Gail was once again given Benadryl, which probably means a rather "sleepy" afternoon.
On the transplant floor, in addition to calling today Day 0, it is also considered the patient's new birthday. April 18th will long be remembered by all of us as a very special day... a new birthday for Gail celebrating the hope for a long, healthy life ahead and Good Friday, a reminder of the hope of eternal life.
Happy Birthday, Gail!
It's done! The transplant/transfusion began at 11:00 this morning and was completed about 45 minutes later.Considering the magnitude of what the transplant means to Gail, the procedure itself was quite uneventful. Stephen, Nathan, Jerry and Gail's brother Mark all attended her "new birth". With the procedure, Gail will have all new cells in her bone marrow; her new blood type will go from O+ to A+.
A very, very special thank you to Gail's nurse for today, Nicole. She was in the room the entire time of the transplant, and answered many questions, from many different angles, from many different people. And how do you say thank you to someone who has given you the opportunity for a new life... that being Gail's donor. We all will be forever grateful!
Gail recovered very well from the rough day yesterday. When Jerry arrived at the hospital about 8:45, she had already started her mile walk. With the procedure, Gail was once again given Benadryl, which probably means a rather "sleepy" afternoon.
On the transplant floor, in addition to calling today Day 0, it is also considered the patient's new birthday. April 18th will long be remembered by all of us as a very special day... a new birthday for Gail celebrating the hope for a long, healthy life ahead and Good Friday, a reminder of the hope of eternal life.
Happy Birthday, Gail!
Thursday, April 17, 2014
Day -1
Holy Thursday, April 17
In yesterday's blog we mentioned that the drug Gail would be taking today did not have any significant side effects. Boy, did we get that wrong!
Today was the hardest day Gail has had since the whole process began. She began the infusion of medication around 10:30 and began feeling bad almost immediately. It made her incredibly nauseous and feeling bad overall. She also developed hives all over her body; they are treated it with a medicine via her IV.
Around 4:00 she felt good enough to open her Pandora app to listen to her spiritual music... by 5:00 she was feeling even better and had a nice long visit with the nurse while having her bandage changed. Gail was also able to take a shorter, but brisk walk this evening.
Tomorrow is a really Big Day... Day 0 and Good Friday! Thanks to everyone for sending the nice cards. Gail really appreciates all the kind and uplifting words.
No picture today... per Gail's order!
Wednesday, April 16, 2014
Day -2
Wednesday, April 16
Today was day five of chemotherapy... Gail handled it well. Today's chemo is known to cause ulcers and sores in the mouth and the esophagus! Gail was told to keep chewing on ice chips and popsicles for about thirty minutes before and an hour after the infusion. As a precaution, ice chips will be a steady part of her diet for the next few days.
Gail was able to spend an hour in exercise and later walked a mile around the floor. She is also very thankful for the chaplains who come by daily to give her Communion. Sisters-in-law Pam and Diane stopped by to visit during lunch and late afternoon, respectively... she really enjoyed visiting with them.
We just learned that the medication taken tomorrow is not a chemotherapy, but a suicide gene or a monoclonal antibody. It seeks out the cancer cells (not all fast growing cells like today's chemo did) and destroys them....or so we hope! It doesn't have a lot of side effects. So that and the fact that tomorrow is Holy Thursday are two reasons to rejoice!
Below is a picture of Diane with Gail (Sorry Pam, I forgot to take your picture with Gail).
Today was day five of chemotherapy... Gail handled it well. Today's chemo is known to cause ulcers and sores in the mouth and the esophagus! Gail was told to keep chewing on ice chips and popsicles for about thirty minutes before and an hour after the infusion. As a precaution, ice chips will be a steady part of her diet for the next few days.
Gail was able to spend an hour in exercise and later walked a mile around the floor. She is also very thankful for the chaplains who come by daily to give her Communion. Sisters-in-law Pam and Diane stopped by to visit during lunch and late afternoon, respectively... she really enjoyed visiting with them.
We just learned that the medication taken tomorrow is not a chemotherapy, but a suicide gene or a monoclonal antibody. It seeks out the cancer cells (not all fast growing cells like today's chemo did) and destroys them....or so we hope! It doesn't have a lot of side effects. So that and the fact that tomorrow is Holy Thursday are two reasons to rejoice!
Below is a picture of Diane with Gail (Sorry Pam, I forgot to take your picture with Gail).
Tuesday, April 15, 2014
Day -3
Tuesday April 15
Today Gail finished the four-day treatment of her first chemotherapy drug. Tomorrow will be a different medicine known to cause mouth sores. She can't wait for that....NOT! She is starting to be a bit more tired, nauseous and has less and less of an appetite. In addition to the chemo, as we head towards Day 0, tomorrow they will be adding some type of anti-rejection medicine to her IV. Her nurse today, Sarabeth, has been great about answering questions!
Today Gail finished the four-day treatment of her first chemotherapy drug. Tomorrow will be a different medicine known to cause mouth sores. She can't wait for that....NOT! She is starting to be a bit more tired, nauseous and has less and less of an appetite. In addition to the chemo, as we head towards Day 0, tomorrow they will be adding some type of anti-rejection medicine to her IV. Her nurse today, Sarabeth, has been great about answering questions!
Fun facts to know and tell....
1. When asked why the nurses wear a special gown and double gloves when hanging the
chemo IV bags, Gail was told that it was because the chemo is so toxic that it would burn through their skin or mine if splashed out! Gail politely asked "Well then what is it doing to my veins and arteries?" The nurse stated that the veins are very sturdy and it doesn't harm them.
2. Most people don't lose their
hair until after engraphment...some will lose all, some partial, some none.
Gail was happy and excited today to be able to Skype with her brother Greg, who lives in a nursing home. Thanks so much to Aura (his caregiver) for handling the IPad and carrying on a conversation, all while getting Greg to give Gail a big smile and an attempted kiss.
Gail's good friend Becky stopped by this evening to visit. All in all, another good day.
Monday, April 14, 2014
Day -4
Monday, April 14
Gail continues to handle all the medications and the third day of chemo pretty well. Gastrointestinal issues have cropped up over the past two days, but we think we have it under control with a combination of medications! Gail is convinced that she must be on every medication class out there! She is a bit more tired, but still feels okay overall. She attended an exercise class that is held on M-W-F. She met a few more of the patients... and spent an hour working out to some energetic music. Anyone remember "Disco Fever"? Her MDS doctor, Dr. Garcia-Manero stopped by to visit while on the floor this morning. We are certainly grateful for all his work and encouragement to get her to this point!
Gail continues to handle all the medications and the third day of chemo pretty well. Gastrointestinal issues have cropped up over the past two days, but we think we have it under control with a combination of medications! Gail is convinced that she must be on every medication class out there! She is a bit more tired, but still feels okay overall. She attended an exercise class that is held on M-W-F. She met a few more of the patients... and spent an hour working out to some energetic music. Anyone remember "Disco Fever"? Her MDS doctor, Dr. Garcia-Manero stopped by to visit while on the floor this morning. We are certainly grateful for all his work and encouragement to get her to this point!
Sunday, April 13, 2014
Day -5
Sunday, April 13
Second day of chemo... a rather ordinary day, which is a good thing. Jerry and Nathan were able to attend the 10:00 am Palm Sunday Mass in the hospital chapel. Gail was not allowed to leave the area, so she watched the service on the television. She also got in her mile lap with her new best buddy, the IV Pole (accompanying her at the computer below).
Saturday, April 12, 2014
Day -6
Saturday, April 12 was the first full day at MD Anderson. While Friday was Day -7, admission did not happen until almost 10:00 pm; the hospital called at 8:30 pm to say her room was ready. The 17th and 18th floors at MDA are designated for stem cell transplant patients and unoccupied rooms are a rarity... truly an amazing place!
By the time the evening nurse Melvin had gone over the upcoming schedule, answered all questions and took Gail's vitals, it was approaching midnight. We won't disclose what her fighting weight will be entering this ring:)
Day -6 got underway around 10:00 am with her first of the 6 days of chemo treatment; she handled that very well. The top three "must do's" during her stay will be to take 3 walks/day, rinse mouth with salt and soda every 2 hours and do breathing exercises in a spirometer every 2 hours. Sixteen laps around the nursing station is equivalent to a mile; Gail walked about two miles today!
The staff in Gail's area are very professional and equally friendly. Her nurse today, Kelly, was wonderful. She also had the opportunity to receive Communion from the hospital chaplain. All in all, a really good day! And she was equally happy to hear that Stephen had a successful first leg to La Grange in the MS 150.
Friday, April 11, 2014
Day -7
The day count is officially on. Transplant day is also known as Day 0, the day when the whole immune system is transplanted. The count day we look forward to is Day +100, when patients are released to "go home". Living in Houston, "go home" does not really apply; it applies more to those who come to MD Anderson from afar and are now able to leave the 25 miles or 30 minutes distance from MDA. For Gail it means she can once again venture outside Houston.
Thursday, April 10, 2014
Hospital Admission Scheduled for Tomorrow, Friday April 11th
Well I hesitated to post another false report, but after seeing my infectious disease doctor on Tuesday I got the green light to go to stem cell transplant. So my hospital admission has been scheduled for tomorrow, Friday April 11th. I had my central line inserted today.....not something you want to do on a daily basis...and that is how they will give me my chemo, blood products and medications for the near future. My stem cell transplant should occur on Good Friday, April 18th. I guess you could say I'm walking the way of the cross with Christ in a more personal way this Easter season! I can feel the joy at the other end of the tunnel!!
I feel fantastic, health wise, and emotionally I am excited and scared at the same time.....but ready to get it over with. The unknown is always the worst part of making it through a difficult situation.
I am so blessed to have all the support of my family and friends who are praying for me and bringing meals to my sweet husband and Nathan while I'm out of commision. I also have my dear friend Becky Newman who is taking care of purchasing all the medical supplies for my brother Greg. She will be delivering them to the nursing home weekly. I have Aura and Naty and Stanna taking care of Greg .....and this team cannot be beat!!! They are so loving and fantastic with Greg!! The nursing home staff has been very supportive as well! I feel so thankful to everyone.
Jerry doesn't know how to blog, so give him some time to catch on....if I can learn, he certainly can!
So keep following my blog if your bored at night!!! haha!
All is shaping into place!
I feel fantastic, health wise, and emotionally I am excited and scared at the same time.....but ready to get it over with. The unknown is always the worst part of making it through a difficult situation.
I am so blessed to have all the support of my family and friends who are praying for me and bringing meals to my sweet husband and Nathan while I'm out of commision. I also have my dear friend Becky Newman who is taking care of purchasing all the medical supplies for my brother Greg. She will be delivering them to the nursing home weekly. I have Aura and Naty and Stanna taking care of Greg .....and this team cannot be beat!!! They are so loving and fantastic with Greg!! The nursing home staff has been very supportive as well! I feel so thankful to everyone.
Jerry doesn't know how to blog, so give him some time to catch on....if I can learn, he certainly can!
So keep following my blog if your bored at night!!! haha!
All is shaping into place!
Monday, April 7, 2014
A thoughtful gesture from AGC Houston!!
I'm a few months late on this but I just would like to acknowledge and thank several of the office staff at AGC Houston for teaming up with the Be The Match Foundation during the holidays to encourage people to become donors. It's never too late to be a bone marrow/stem cell donor!
Below is a copy of the Jan.7th newsletter promoting the Be The Match Foundation.
Below is a copy of the Jan.7th newsletter promoting the Be The Match Foundation.
Latest Update:
I met with Dr. Champlin today. The chest CT scan still shows some areas that could be scar tissue or the remains of the infection. He wants me to see Dr. Chemaly, the infectious disease doctor, tomorrow morning. He will be the one to say if I have the ok to go to transplant or if I need to be treated with a different antibiotic. Waiting is the name of the game!
Friday, March 21, 2014
More Delays- Yuk
March 20, 2014 After meeting with an infectious disease doctor today and Dr. Champlin, it looks like the delay will be at least 2-3 weeks, perhaps longer. They have to treat what ever is going on in my lungs before giving me the heavy chemo and transplanted stem cells. It just wouldn't be safe to proceed at this time. The cultures take several weeks to grow. In the meantime I have been started on two new antibiotics and a new anti-fungal medication. Get this....this new anti-fungal medication costs $7215 per month supply, and a negotiated insurance price of $4674. My co-pay amount is $45..... now that's a BARGAIN! This medicine must be made of gold!!
I did find out today that the donor, a 29 year old international male is confirmed! My new HERO! So that is real good news. They will collect his stem cells ahead of time and then freeze them and have them ready to transplant into me when I am ready. I am learning baby steps will get you there too, maybe not as fast, but sometimes the surest approach!
I did find out today that the donor, a 29 year old international male is confirmed! My new HERO! So that is real good news. They will collect his stem cells ahead of time and then freeze them and have them ready to transplant into me when I am ready. I am learning baby steps will get you there too, maybe not as fast, but sometimes the surest approach!
Tuesday, March 18, 2014
Delayed Admission and Transplant
We have learned of some set backs over the past two days. First off, we have been notified that my donor has had to back out due to what sounds like a medical issue. The good news is that they have contacted the second donor on the list and they are saying that they can be ready as soon as April 1.
That would place me being admitted on next Tuesday, March 25th...a five day delay. Let's hope and pray all goes well with his physicals etc. and that this gentleman works out! It's a 29 year old European donor with an A+ blood type.
Secondly, my chest X-ray yesterday morning showed a suspicious spot on my lungs that needs to be checked out. So that spurred a CT of the chest and a visit to a Pulmonologist this morning and a bronchoscopy this afternoon. I will have an Infectious Disease consult as well on Thursday. The results from the bronchoscopy are pending. They will send the samples to be analyzed to see what is growing in my lungs. The pulmonologist said he didn't think it looked like pneumonia, but we have to wait and see.
In the meantime, I am feeling fine. We are disappointed in the set backs, but are thankful I'm feeling well and that I have a few more days to prepare for the long recoup period.
March 20, 2014 After meeting with an infectious disease doctor today and Dr. Champlin, it looks like the delay will be at least 2-3 weeks, perhaps longer. They have to treat what ever is growing in my lungs before giving me the heavy chemo and transplanted stem cells. It just wouldn't be safe to proceed at this time. The cultures take several weeks to grow. In the meantime I have been started on two new antibiotics and will start on a new anti-fungal medication. The donor issue is still pending.
That would place me being admitted on next Tuesday, March 25th...a five day delay. Let's hope and pray all goes well with his physicals etc. and that this gentleman works out! It's a 29 year old European donor with an A+ blood type.
Secondly, my chest X-ray yesterday morning showed a suspicious spot on my lungs that needs to be checked out. So that spurred a CT of the chest and a visit to a Pulmonologist this morning and a bronchoscopy this afternoon. I will have an Infectious Disease consult as well on Thursday. The results from the bronchoscopy are pending. They will send the samples to be analyzed to see what is growing in my lungs. The pulmonologist said he didn't think it looked like pneumonia, but we have to wait and see.
In the meantime, I am feeling fine. We are disappointed in the set backs, but are thankful I'm feeling well and that I have a few more days to prepare for the long recoup period.
March 20, 2014 After meeting with an infectious disease doctor today and Dr. Champlin, it looks like the delay will be at least 2-3 weeks, perhaps longer. They have to treat what ever is growing in my lungs before giving me the heavy chemo and transplanted stem cells. It just wouldn't be safe to proceed at this time. The cultures take several weeks to grow. In the meantime I have been started on two new antibiotics and will start on a new anti-fungal medication. The donor issue is still pending.
Sunday, March 9, 2014
Dates Set
I am scheduled to be admitted to the hospital on Thursday, March 20th and the cell transfer should happen on March 27th. Things could obviously change....illness on either the donor or my end could postpone things. I have all kinds of tests scheduled for the week before I am admitted and will have a central catheter inserted on the 19th. This is where the drugs and blood products will be administered. Then on the day I am admitted they will start giving me the heavy doses of chemo therapy to wipe out the cancer cells as well as my own good cells. This is to ready my body so it will accept the donors cells and not fight with the transplanted cells as being a foreign invader.
Sunday, March 2, 2014
Heads Up ....We're Headed to Stem Cell Transplant!
All that worry for nothing! My blasts finally cooperated and boogied downward all the way to 4%!! My appointment on Thursday with Dr. Garcia-Manero went well and he was clearly ready to send me to Stem Cell transplant at this time.
Next I will meet with the Transplant doctor, Dr. Champlin, on Monday and he will let me know what all I need to do to be ready for the transplant. The transplant coordinator called today to inform me that it usually takes about 4 weeks for the actual transplant to occur. So she will need to contact the donor and give the donor some choices of dates.They don't want to wait too long because that only increases the chances of me coming up with some infection or having the blasts rise again. The timing with the donor cell collection and the transplant (into my body) all has to be coordinated very closely.
The donor has to give his stem cells or bone marrow (his choice) the day before I receive them by infusion into my own body. Oh by the way, did I mention he.....He is my new HERO....a 24 year old male that lives out of the country! They can't tell me the name or contact information for at least two years (one year for donors living in the U.S. and two years for international donors). I also know that his blood type is O-, so after the transplant I will have a new blood type! It is all such a medical miracle!! At the earliest I could be entering the hospital mid March, but we will learn more in the next couple of weeks.
Next I will meet with the Transplant doctor, Dr. Champlin, on Monday and he will let me know what all I need to do to be ready for the transplant. The transplant coordinator called today to inform me that it usually takes about 4 weeks for the actual transplant to occur. So she will need to contact the donor and give the donor some choices of dates.They don't want to wait too long because that only increases the chances of me coming up with some infection or having the blasts rise again. The timing with the donor cell collection and the transplant (into my body) all has to be coordinated very closely.
The donor has to give his stem cells or bone marrow (his choice) the day before I receive them by infusion into my own body. Oh by the way, did I mention he.....He is my new HERO....a 24 year old male that lives out of the country! They can't tell me the name or contact information for at least two years (one year for donors living in the U.S. and two years for international donors). I also know that his blood type is O-, so after the transplant I will have a new blood type! It is all such a medical miracle!! At the earliest I could be entering the hospital mid March, but we will learn more in the next couple of weeks.
Tuesday, February 25, 2014
The Big Dilemma
This is the last week of my my fifth cycle - my drug holiday week - with no infusions of Vidaza and no Procinostat pills three days a week. This coming Tuesday I will have another bone marrow biopsy to see if the fifth cycle of chemo has made any difference.
Many have been asking how I'm feeling. I am feeling well; however finally this week I can tell my energy level is not at a level I am accustomed. I wake up feeling drained, and generally need a nap or the opportunity to at least kick up my feet. I still take my mile and a half walks around the neighborhood (several times a week), but if I go up the stairs too quickly, I feel my heart pounding. This is not typical for me. I am guessing that I am finally feeling more the effects of the disease as opposed to the chemo. My hair is thinning a bit which is likely the accumulative effects of the gentle chemo.
The past month has been difficult in the sense that there is so much uncertainty in which direction I will be heading in the next several weeks. The recommendations of my two doctors (leukemia and transplant) are in conflict with each other. The two "camps" appear to have very different philosophies on how to proceed. One being to continue the chemo that could bring my blast and cytogenetics better under control and the other favoring proceding with the transplant as quickly as possible to avoid the risk of the blasts suddenly rising or my getting an infection.
I have two brilliant and experienced doctors....among the best in the world! The majority of stem cell transplants in the entire world are done at MD Anderson and Dr. Champlin is the chair of the stem cell department. Dr. Garcia-Manero sees the majority of all the patients in the world with MDS. That is why I continue to feel so fortunate to be treated at MD Anderson and to live here in Houston!
Both doctors agree that my only hope is to have a successful Stem Cell Treatment; they both agree my chances are good due to my age and my health. Where the difference lies is in how they wish to proceed from here. We'll see what Thursday's appointment has in store!
Emotionally, I continue to be at peace and resolved that I am exactly where God wants me right now. Although the past few weeks have been emotionally exhausting, the encouraging thing is that each time I started getting consumed with these thoughts and felt myself falling downward emotionally, I heard or read something that reminded me that God loves me and He is in control, and all I need to do is quiet myself, trust that He loves me, and He will show me the way. It is phenomenal all the places I have found Him talking to me....my daily devotional books, the daily scripture readings for mass, a sermon, a friend's kind card or words etc. etc. Today we attended mass at St. Elizabeth Ann Seton church. A woman went up at the end of mass to make an announcement and to plug a new high school youth group forming there. She ended with a quote from St. Teresa of Avila....
"Let nothing trouble you,
Let nothing frighten you,
Everything passes,
God never changes,
Whoever has God
Wants for nothing,
God alone is enough. "
I went up to her after mass and asked her if she could tell me where she found that quote. I explained that I was going to be needing a stem cell transplant soon and that I found that quote comforting. She
quickly said "Oh, where are you going to have it?" When I replied "MD Anderson", She said "Oh wonderful, my daughter is a nurse on the stem cell transplant unit...look her up!" It was clear to me that, yet again, He was talking right to me. I think I'm going to take that quote with me to the hospital as I go through the transplant!
In the meantime I continue to do my research, trying to gather the facts and data, so that I can make the best decision possible based on the facts at hand and the expertise of my doctors.
Many have been asking how I'm feeling. I am feeling well; however finally this week I can tell my energy level is not at a level I am accustomed. I wake up feeling drained, and generally need a nap or the opportunity to at least kick up my feet. I still take my mile and a half walks around the neighborhood (several times a week), but if I go up the stairs too quickly, I feel my heart pounding. This is not typical for me. I am guessing that I am finally feeling more the effects of the disease as opposed to the chemo. My hair is thinning a bit which is likely the accumulative effects of the gentle chemo.
The past month has been difficult in the sense that there is so much uncertainty in which direction I will be heading in the next several weeks. The recommendations of my two doctors (leukemia and transplant) are in conflict with each other. The two "camps" appear to have very different philosophies on how to proceed. One being to continue the chemo that could bring my blast and cytogenetics better under control and the other favoring proceding with the transplant as quickly as possible to avoid the risk of the blasts suddenly rising or my getting an infection.
I have two brilliant and experienced doctors....among the best in the world! The majority of stem cell transplants in the entire world are done at MD Anderson and Dr. Champlin is the chair of the stem cell department. Dr. Garcia-Manero sees the majority of all the patients in the world with MDS. That is why I continue to feel so fortunate to be treated at MD Anderson and to live here in Houston!
Both doctors agree that my only hope is to have a successful Stem Cell Treatment; they both agree my chances are good due to my age and my health. Where the difference lies is in how they wish to proceed from here. We'll see what Thursday's appointment has in store!
Emotionally, I continue to be at peace and resolved that I am exactly where God wants me right now. Although the past few weeks have been emotionally exhausting, the encouraging thing is that each time I started getting consumed with these thoughts and felt myself falling downward emotionally, I heard or read something that reminded me that God loves me and He is in control, and all I need to do is quiet myself, trust that He loves me, and He will show me the way. It is phenomenal all the places I have found Him talking to me....my daily devotional books, the daily scripture readings for mass, a sermon, a friend's kind card or words etc. etc. Today we attended mass at St. Elizabeth Ann Seton church. A woman went up at the end of mass to make an announcement and to plug a new high school youth group forming there. She ended with a quote from St. Teresa of Avila....
"Let nothing trouble you,
Let nothing frighten you,
Everything passes,
God never changes,
Whoever has God
Wants for nothing,
God alone is enough. "
I went up to her after mass and asked her if she could tell me where she found that quote. I explained that I was going to be needing a stem cell transplant soon and that I found that quote comforting. She
quickly said "Oh, where are you going to have it?" When I replied "MD Anderson", She said "Oh wonderful, my daughter is a nurse on the stem cell transplant unit...look her up!" It was clear to me that, yet again, He was talking right to me. I think I'm going to take that quote with me to the hospital as I go through the transplant!
In the meantime I continue to do my research, trying to gather the facts and data, so that I can make the best decision possible based on the facts at hand and the expertise of my doctors.
Subscribe to:
Posts (Atom)