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!
Sunday, July 20, 2014
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.
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