My gosh how the days just keep adding up and how I await some good counts. I have most definately enjoyed my weekend away from the joint. Nothing better than some freedom to refresh my soul. The kids are home from Granny & Grandads's and I got to play with them, read to them, eat with them...it is amazing how the most simplistic things in this world give me so much joy. I just love being their mother, providing for them, and nurturing them.
I have been on an emotional roller coaster since I have arrived home. I guess I over simplified how easy or shall I say how hard coming home would be. It is great to be home but it is also a reminder of what I have at stake in all this treatment mess. It is a reminder of how sick I am when I can't provide for my own family. The hospital was kind of a coccoon from all of those reminders. Weird.
However after some good long talks with Dave, Mom, Michele, and Dad I am back to living in the moment; just for the day. It is what god tries to teach all of us and I must say it is the most difficult lesson in the world. So today is a great day. I am alive, I am home, I am beating this f*&ck*&* cancer, I got to be with my kids, be with Dave, and mom is coming over with dinner tonight. Also some great advice from Dad - get off my butt, out of this house, and get some fresh air. I have been doing just that and it is doing wonders for my spirit. Nothing worse than sitting around a house getting depressed.
As for my physical state I have no idea what my counts are but I feel good. I am getting thin since eating is a big old pain in the butt. Nothing tastes right, I am on a low sodium diet (Aunt Linda I need recipes), and wichever way my digetstive system is running (or not running) it's tricky eating. Waffels have seemed to be a big winner this weekend.
Tommorow brings a cat scan and day at the hospital but I am up for it. It's a good day!
A journal to keep everyone up to date with my Primary Refractory Hodgkin’s, radiation myelitis, and the little Z’s.
Followers
A QUICK TIMELINE
2006
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
January
Conceived our third child
Began to display symptoms of Hodgkin's - night sweats, itching, swelling, shortness of breath
March
Diagnosed with Hodgkin's and began 6 cycles of ABVD
Pregnant with cancer - what luck
August
Delivered Alex on August 28
PET Scan on August 31 - results that the ABVD did not reduce my tumor
re-diagnosed with Primary Refractory Hodgkin's
September
Consultation with NIH and Hopkins - recommended that I have 2 cycles of ICE then Stem Cell Transplant (SCT).
October
PET Scan results that I could get the SCT
November
Had another cycle of ICE while waiting for transplant (3rd) Began SCT process
December
Final cycle (4th) of ICE
Unable to mobilize stem cells and waiting for bone marrow harvest
2007
January
Harvest bone marrow from bones under twilight meds Admitted into hospital for SCT; new birthday Jan. 16
February
Released from hospital - 2 days later back with VOD
Final release on Feb. 14 (happy v-day)
April - May
Radiation treatments
June
PET scan to see if treatment & SCT worked - it did and I am cancer free!
July
Hospitalized for pneumonia and missed Charlotte Marie's 4th bday.
On oxygen support
August
Alex's first birthday - can you believe it!
September
Returned to work part time
Lee started kindergarten
October
Diagnosed with BOOP - out of work again
Back on oxygen support and steroids
Resigned from job to focus on health
2008
Jan.
1 year anniversary of SCT - still cancer free
April
Diagnosed with radiation myelitis
July/August
Lost moblity in lower extremities - wheelchair bound.
Using Avastin to try to stop progression of myelitis to my arms and hands
Good Links
Maple
1 comment:
Good Afternoon Heather! Glad to hear that you are taking good care of yourself and that you had such a good weekend. We had Uncle Ron, Lynn & Jillian here. Jillian played a flute solo with her hs symphonic band at All Northwest. A big honor for the band to get invited and a special honor for her to have a solo. Uncle Ron was bursting his buttons. Imagine the youngest Coons cousin is graduating from high school this June. I am so glad to read your upbeat message. One day at a time is not a bad motto for all of us. Savor the moment so to speak. You are amazing...hugs to the little z's, they beat chicken soup as a remedy to what ails you! And they are such smart kids to have chosen you for their mom. xoxo Joyce
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