Hello to all,
So how did I get from there (remission) to here (relapse)?
Well, it actually started back in August 08. I was approaching my 3 yr remission anniversary and my 3 month interval appt's with my hematologist were about to move up to 6 month intervals.
Pete and I wanted to be certain at this point that we could truly move on with life so at my Aug. appt when my doc once again confirmed my blood work was just fine, I requested a CT scan. That way I thought, all doubts/fears could be put aside. Well, low and behold the results came in the 1st week of September and they showed node growth.
What does node growth mean? Hodgkins is a cancer of the lymphatic system and it flows through your blood stream and lymph nodes - those nodes are located throughout your body; your neck, behind your ears, underarms, many,many through your torso and right down to behind your knees. My little nodes on my last scan in May 06 had grown enough to raise a flag by Aug 08. Those nodes are all located primarily in my torso..in my chest, abdomen and lower back/pelvic area mainly.
My doc then ordered a gallium scan and a biopsy on the largest lower back node to get some conclusive results. I had both completed over the next few weeks and the results were inconclusive, what does that mean? More in a moment but 1st a few words of explanation...
A Gallium scan is much like a CT scan except a few days prior to the scan they inject you with certain radioactive isotopes [for that nice nuclear glow] that gather to abnormal cells on the scan, "hot spots" if you will. A biopsy can be fine needle, CT guided, or surgical - this one for me was CT guide. This is where rather than a fine needle drawing out a sample of the node, a needle with a 'clip' on the end (as the name infers) clips off a sample of the node for examination.
My gallium scan lit up - basically telling my doc that I had relapsed. However, the biopsy results were negative (yeah!) but unfortunately my doc was pretty certain that they had just not clipped the right spot since the node they were going for was very deep in my torso and right along my spine, so difficult to reach/pinpoint.
What next (believe you me, I asked that question to myself over and over). It was decided by my doc to wait 3 months from the original CT and rescan - if further growth was noted, then re-biopsy for (hopefully) conclusive results. I'm certain everyone by now knows what came next. A CT scan in November annnnndddd...Bingo! - more growth. This time no fooling around though. My doc sent me to a surgeon to see if he could surgically biopsy a node in my chest. He could, and did so on Dec. 18th in a procedure called a thoracotomy+medianoscopy . I have a delightful scar now right across my throat where he went in but after months of waiting, on Jan 5th 2009 my doc called me at the end of the day (at work!) and advised me of my relapse.
Garbage is what I say, absolute garbage. This is not what I had mapped out in my life plan but to quote a man I used to work for and admire to this day, "it is what it is". So, I move forward with great support from family and friends into this next chapter. I put together my new plan to get through this armed with information, empowerment, decisiveness, confidence, love, optimism and hopefully gratitude and grace.
What is my plan? (1) Protect what I have (2) Get rid of what I don't want (3) Start anew (4) move forward
So how did I get from there (remission) to here (relapse)?
Well, it actually started back in August 08. I was approaching my 3 yr remission anniversary and my 3 month interval appt's with my hematologist were about to move up to 6 month intervals.
Pete and I wanted to be certain at this point that we could truly move on with life so at my Aug. appt when my doc once again confirmed my blood work was just fine, I requested a CT scan. That way I thought, all doubts/fears could be put aside. Well, low and behold the results came in the 1st week of September and they showed node growth.
What does node growth mean? Hodgkins is a cancer of the lymphatic system and it flows through your blood stream and lymph nodes - those nodes are located throughout your body; your neck, behind your ears, underarms, many,many through your torso and right down to behind your knees. My little nodes on my last scan in May 06 had grown enough to raise a flag by Aug 08. Those nodes are all located primarily in my torso..in my chest, abdomen and lower back/pelvic area mainly.
My doc then ordered a gallium scan and a biopsy on the largest lower back node to get some conclusive results. I had both completed over the next few weeks and the results were inconclusive, what does that mean? More in a moment but 1st a few words of explanation...
A Gallium scan is much like a CT scan except a few days prior to the scan they inject you with certain radioactive isotopes [for that nice nuclear glow] that gather to abnormal cells on the scan, "hot spots" if you will. A biopsy can be fine needle, CT guided, or surgical - this one for me was CT guide. This is where rather than a fine needle drawing out a sample of the node, a needle with a 'clip' on the end (as the name infers) clips off a sample of the node for examination.
My gallium scan lit up - basically telling my doc that I had relapsed. However, the biopsy results were negative (yeah!) but unfortunately my doc was pretty certain that they had just not clipped the right spot since the node they were going for was very deep in my torso and right along my spine, so difficult to reach/pinpoint.
What next (believe you me, I asked that question to myself over and over). It was decided by my doc to wait 3 months from the original CT and rescan - if further growth was noted, then re-biopsy for (hopefully) conclusive results. I'm certain everyone by now knows what came next. A CT scan in November annnnndddd...Bingo! - more growth. This time no fooling around though. My doc sent me to a surgeon to see if he could surgically biopsy a node in my chest. He could, and did so on Dec. 18th in a procedure called a thoracotomy+medianoscopy . I have a delightful scar now right across my throat where he went in but after months of waiting, on Jan 5th 2009 my doc called me at the end of the day (at work!) and advised me of my relapse.
Garbage is what I say, absolute garbage. This is not what I had mapped out in my life plan but to quote a man I used to work for and admire to this day, "it is what it is". So, I move forward with great support from family and friends into this next chapter. I put together my new plan to get through this armed with information, empowerment, decisiveness, confidence, love, optimism and hopefully gratitude and grace.
What is my plan? (1) Protect what I have (2) Get rid of what I don't want (3) Start anew (4) move forward
- Protect what I Have: Pete and I are going through steps to give us some choices in the future for our family. Nothing is guaranteed but by the end of next week (the 24th or so) we should have about six little embryos wearing sweaters and touques in a freezer for a few years...maybe more on that later should I feel compelled to give details. Also, have to protect my teeth (transplants are hard on them too) so dental appt's, plus legal appt's and research! research! research! on my next steps
- Get Rid of what I don't Want: That's the chemo part. I'll find out more on that tomorrow when I meet my new transplant hematologist at the Juravinski Cancer Centre. How many rounds, what the drug combo will be, how long each will take, etc.
- Start anew: That is the Stem Cell/Bone Marrow harvest and re-infusion part. I will definitely provide a run through on that process in another post - once I get confirmations on everything tomorrow
- Move forward: After the transplant I need to acknowledge to myself that I will be tired, weak perhaps, and my immune system will be in its infancy. However, I plan with each day to accumulate some strength and get to get on with what all this is about -the joy of loving my son, my husband, my family, my friends, my life.
Thank you all for following my journey.
Much love and take care.
