I saw my radiation oncologist yesterday. We set up the PET scan for 6 weeks after the radiation ends (this Friday). This is the test that will show us (hopefully without any doubt) if there is any live cancer left. There are a couple of scenario's that will happen based upon the test:
1. It's clean and I am in remission
2. There is a small area lighting up and we will boost it with radiation
3. There is still a large area lighting up and I will have to consult with my oncologist about next steps.
I am pulling for #1 and that this will all be over.
Over the next 3-6 weeks I need to be on the look out for any signs of a cough or fever that would indicate an infection in my lungs. My skin will heal about 2 weeks after the radiation is over. I will forever need to keep my radiated area out of sunlight and watch the moles on my back for cancer.
Other more important news....
Alex had some shoots last Thursday and has been experiencing fevers since. They are high and a bit worrisome. We have been in constant contact with his doctor and should see them again today. Dave and I are just torn up that our little guy is so miserable. We pray it's nothing serious, the fever breaks, and he can keep from being admitted to the hospital.
I will keep everyone posted on Alex.
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:
Heather, you are my hero. I marvel at your entries, reviewing the results of your treatment and sharing your hopes. You are fighting, living and loving each and every day, and although that doesn't sound like much when you write it down, it is the perseverance that rings of gallantry. Anyone can react to an isolated situation bravely and be recognized for it. But since time began mothers have carried on day after day after day with incomprehensible burdens on their shoulders. There can be no greater hero than the person who faces seemingly endless daily challenges with determination, the quiet grace of gratitude and love. You are my hero, my example to emulate when times get tough. Thank you and may God bless you. cd
Whoever anonymous is, what beautiful words. I think anyone who knows you, Heather, can look to you as their hero, too.
We can ALL learn a lot from how you've handled yourself throughout the past year.
How can anyone who knows you not admire your courage and strength.
Thanks for being a mom to our grandchildren, a wife to our son ... and our "daughter" (in-law), too.
I know there are better times ahead, it's about time.
Much love,
Louise (and, of course Dan concurs with me!)
Hey there! How is Alex doing today? I hope that he is on the up swing! I continue to pray for you, your family and your full recovery, Heather. Talk soon! Love, Julie
Hi Heather! Glad to hear you're just about done with radiation. I hope Alex is doing better -- it's so stressful when a baby has a fever and has no real way of telling you what hurts. But hopefully he's back to his happy little self by now...
It was so good to see Michele a couple weeks ago. I have to say the picture of Charlotte in the tub looks like a little mini-Michele!
Keep up the great attitude -- you're all in our prayers.
Justine
Post a Comment