A lot of news again from the hospital today. My counts are up - even my neutrophils! After my count check I attended a discharge class from the in-patient-out-patient center. I learned a lot about what to will happen this next year. I guess we knew how serious this entire transplant was prior but I was just so anxious to get started you kind of brush off all the after effects.....now they are here staring me in the face. Didn't have a choice did I.
After discharge class was my appointment with my radiation oncologist. We discussed the tentative plan, all the side effects, and then they staged me later that afternoon. They want to be as precise as possible and avoid my lungs and breasts since the possibility of a secondary cancer in 10 years is very high for me. To avoid radiating other areas they created a "cradle" that I lay in so every time I have radiation I will lie in the same exact way. They also made a mask so my head and neck will not move. If you are claustrophobic I do not recommend the mask. I even freaked me out a bit. I officially start radiation on March 21.
I also got my catheter removed today. It was pretty quick and painless. I can have a normal shower in 5 days!
I get a PET scan tomorrow and this will really tell us what is going on with the cancer. This is the scan that lights up the active cancer cells like lights and we will see how well the SCT worked and what radiation needs to clean up.
I am exhausted from today - my mom and I were there all day. I received so much information I will have to write about it over the next couple days to process it all. Information about my quality of life for the next 2 years, what to expect from radiation, details about my mass, details about the other nodes in my neck, lungs, armpit, and side effects, side effects, and more side effects. It was what Dave and my mom call and "action day" - big time.
I just need to keep focusing on getting better, keeping my counts up, and melting this mass. I visualize melting every day. I am melting this big mass out of my body.
I will post more tomorrow after the PET. Hopefully they don't make me wait all weekend for the results. Nerve wracking since this test is a little unexpected. Pray that nothing lights up on this scan. That would be a miracle.
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
4 comments:
Melt, Melt, MELT! I am visualizing too H-Feather. I start training for the St. Pete marathon today, so I will use the melting chant as my mantra.
You are doing an awesome job at being strong and positive and I hope you realize that through your actions you are being a great role model for the kids right now - teaching them a many positive things on many unseen levels.
Simply put, you are a rock star!
Michele
The prayers will be for "melting". I don't know if told you but you are on a cancer prayer list that many teachers in my school district belong to. I just let a former team member and breast cancer suvivor know about your updates she get the word out and away they go! As always love and prayers to the five of you!
Aunt Linda
Putting a foodservice spin on it, think of yourself as a fondue pot with giant holes in the bottom and sides. Then for fun, think about sipping champagne and dipping fresh, luscious strawberries in hot fudge in celebration of your recovery! Damn! Now, I am hungry.
John Cornyn
Melting....I like that... when ice melts it then evaporate into the air...and I can just see this cancer melting and evaporating away. Mic is right...your attitude will impact your kids for years to come...face a challenge head on and conquer it with grace. One day at a time...a day well lived is golden...a day wasted can never be relived. You certainly are making the most of each and every day. Here's to many bright and wonderful days yet to come. Hugs to all the Z's...and Maple, too. Bless you. Aunt J.
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