What a week! With my being away from David and Michellie for the big meeting on Tuesday, it has been something of an overwhelm and a settling that has occured for the rest of the week. I wanted to spend some time to give everyone more detail of what Tuesday was like and what we were balancing.
David and Michellie met with our coordinator, Lesley; our oncologist, Dr. Fernandez; and the radiotherapist, Dr. Rutledge. I was on speaker phone from Kelowna. Dr. Fernandez reiterated that Michellie had been diagnosed with Hodgkins Lymphoma at Stage 2 Classical Nodular. This was a bulk disease and very large - larger than 6 cm. - something the size of a Mango. She had B symptoms which included night sweats, which increase her likelyhood of a reoccurence by 10%. Another risk factor was her ESR count - Erythrocyte sedimentation rate. This is the rate that red blood cells sediment in one hour and measure inflammation. ESR is an adverse factor that they also consider. Normal range is from 1 - 10, and Michellie had a score of 58. With all of these factors considered and the speed at which the chemotherapy cleared the cancer out, they could estimate that she has a 75% chance that the cancer will not come back. However, because she is a type B, this is reduced by 10% to 65%. Dr. Fernandez was very optimistic with the way that Michellie responded to the chemo in regards to the cancer, and he was very surprised how quickly she was able to completely clear it out and have clear scans after only 2 treatments. (They don't consider any other factors that could be linked to this, so we just know the dietary changes we made - specifically NO SUGAR- to feed the cancer cells and reduce the immune system, the balancing of the emotions linked to the development of the cancer, the healing work many people contributed and the thousands of prayers said for Michellie).
Dr. Rutledge talked about his numbers being slighly different from Dr. Fernandez, and that he felt Michellie had an 80% chance that the cancer would not return based on her present state and the speed at which she responded to treatment. He felt that by adding radio therapy he would be able to increase this number by 10% more. However, if we went ahead with radiation there were several things to consider. The short term side effects of radiation is 14 treatments over 2 and a half weeks, that would produce a sunburn on the inside of her body, some burning up her esophagus, and dry mouth and perhaps some sores in her mouth. The long term effects of her type of radiation was something more to consider. Because the tumor had been in the center of her chest cavity it was in close proximity to her thyroid. Radiation could eventually lead to a 40% decrease of the effectiveness of her thyroid that would need to be controlled with medication for the rest of her life. There was a potential increase for risk of breast cancer by any tissue affected by the radiation, and there could be scarring on the top of her lungs that could hinder her ability to have full lung capacity in the long term.
Dr. Fernandez then talked about what if the cancer were to return. If this happened, it would be within the next 2 years most likely, but that they will be scanning her and watching closely during this time frame. If it reoccured then we would be looking at a bone marrow transplant, plus double the chemo and radiation. Of those people, who have this happen, there is a 50% chance of full recovery, but damage to the heart and lungs would be probable, with Michellie's chance of fertility being decreased also. There was a 1 in 10 chance that she could develop Leukemia or Bone Cancer.
After these numbers and the reality of the situation, they conferrred that there was no precident to follow, the results of the recent study that had just finished did not have results to release yet. However, based on what they had seen in the past, they felt that the decision was ours and they would support whatever we wanted.
As many of you know, we were praying and hoping that the radiation could be removed from Michellie's treatment. We prayed that the best for her care would be presented to us, and it was. The numbers were not strong enough to warrant the long term effects of adding the radiation. We had been given the opportunity to choose for ourselves and we could be very confident in stating that we felt it was not in Michellie's best interest to add radiation at this time, with the knowledge that we had at this time. Michellie was overwhelmed with all of the information and a decision and did not want to give an opinion. David was a little rattled by all the detail, and I was affirmed in my knowledge that radiation was not what Michellie needed at this time. We all agreed that we would let the radiation go. We let the doctors know our decision, and David told me later that the sigh of relief from the doctors was huge. They were happy for our decision. The rest of the team for Michellie was also happy and relieved. This helped us a lot. We know that the protocol still called for radiation and that the doctors had to follow protocol, but we were thrilled that our prayers were answered and we were given the choice! All of this took 2 hours of discussion and presentation.
For those that have not experienced such illness, it seems like a huge victory to celebrate and that all is done. But we did not feel that. We were so relieved to have had the choice and to know that Michellie did not have to endure any more treatment. She could rest. Each in our own time, we had a cry to release all of our tension. But, we still have a road of recovery ahead of us, and we have the long term effects of the chemo to work on. Wow. We never realized all that others who had gone before us had endured. As my aunt Karen made these choices for her life over the last 3 years, we did not realize what she was really going through and what it all meant for her and her fight for life. And, of course, there are so many others who have been affected by dis-ease and made similar choices or spent so much time recovering. It really is overwhelming. We are so uplifted by the fact that Michellie has removed the cancer from her body, and we are optimistic and motivated to do all that we can to keep it that way. We do know that we have to be proactive, and we have to continue to work to keep her body healthy and strong, as everyone really should.
Michellie and David spent the afternoon at a movie to relax and let the day wash over them. I spent a whole day with my neice, Jessica, and my nephew, Carson, and I loved every moment of sharing with them. Life is so gracious to us all. Michellie seemed to relax and push forward into taking care of herself and pushing for more exercises to build her stamina and her strength. In only a few short hours I returned home on Thursday evening to have a chance to reflect with everyone together.
Michellie has had some difficulty with processing all of the information from the meeting with the doctors. She listened to everyone and she tried to let much of it wash over her, but there is a big fear of what if... She found herself in a panic attack and short of breathe as she worried about a future with more cancer. Some of my latest work developing a meditation called "The Inner Smile", which comes from Qi Gong, was able to release her fear and allow her to find "gratitude" in her heart and love for herself. This was a big process. With the chemo so fresh in her mind, gratitude is a hard emotion to grasp and hold on to. She is glad and relieved the cancer is gone, and now she is working to be grateful for the experience and what it has brought to her life. She is now breathing a lot easier and more deeply, and she is embracing life for what it is, and living each moment as it comes. She is very determined to remylenate the sheath of the nerves to repair the nerve damage in her legs, and she uses "the Star" everyday to this end. She is also staying on top of consuming Olive Leaf Extract for repair and immune building, Glutathione supplements for repair, Vitamin D, Calcium and Magnesium. Dad made awesome smoothies while I was away, so she is staying on top of eating well and with minimum refined sugar intake. She even helped to make the Garbanzo Bean chocolate cake yesterday.
Michellie and David experimented with adding wheat back into her diet, and she was ok for a few days, but then the cumulative effect started to take over, and the stomach cramps were back. Both were relieved to have me in the kitchen to make some gluten free pancakes and cake once again. We will meet with a stomach specialist in another 2 months to look at everything after chemo and to see where we go next. We are happy about this. In the meantime, we will continue to learn and heal as we know how.
There is much more to tell, but I think this blog gets everyone caught up about our big day, and we will save some incredible and exciting stories for Michellie's future with you on the next blog.
Again, we cannot thank everyone enough for all of their love, thoughts, prayers, support, laughter, sharing etc. with us. Everyone needs to reflect on how they played a part in Michellie's recovery and the success of her story. Community is so important to everyone. And, you are all so important to us. Thank you!
