First off, I am sorry to be sharing such depressing stuff with all of you, but for some reason your responses help me more than my friends' sometimes, and there are some things that I feel more comfortable discussing/getting off my chest here.
As I am writing this the pain is still pretty raw, so if I don't make sense at times, please forgive me. Also, this one is probably going to make some of my "novel" posts look like short stories - fair warning.
His scans showed "areas of concern" under his arms and across his chest. Quick Hodgkin lesson - it is a lymphoma, which is a cancer of the lymphatic system (our infection control if you will) There are groups of lymph nodes all over your body, and the areas that showed activity on the scan are in the areas where lymph nodes live. They were still unpalpable on exam, though.
His oncologist seems quite baffled by the results, given Jason's response to the chemo the first time around, his "spot on, perfect" blood work and overall general health.
Regardless, Jason is still being referred to a specialist for a stem cell transplant. This was the exact news I didn't want to hear. The only comfort is that Dr. Harris said it will be a stem cell instead of a bone marrow transplant. The stem cell transplants seem to be less destructive to the patients than bone marrow transplants. Why I know about all this is one of the problems I have. Don't know if I have shared this bit about myself, but when my oldest was born I was the unit coordinator for the pediatric cancer unit at our children's hospital. I just know too much, and I've watched very strong children die...a lot of them in the bone marrow/stem cell transplant unit. And even when they survive that, sometimes it doesn't work.
There is a (small) chance that the SCT specialist will recommend a different chemo regimen than he had the first time, followed by radiation, but my gut is telling me that isn't the case - and I don't think that is the fear talking.
And its just not the dangers with a transplant that scare me, its not just the thought of having to see him suffer the high doses of chemo and side effects that it will bring. Those are my main concerns. Secondary to that are the financials.
Here is one of the areas that I can discuss with all of you easier than my circle of friends in "real life". Insurance is always king in medicine, and it decides where you can go. There are two centers nearby that are very good at what they do - the Mayo clinic and the University of Florida. However, we don't know yet if they will accept his insurance, or even if this is a cancer that they deal with. There is a chance that he could get sent to the Moffit center in Tampa (about 3-4 hours away, if you are counting), Anderson (all over the country, the closest is in Orlando), or even out of the state. I don't know how we could afford this.
When he went through chemo last year, his company was AMAZING. The owner of the company called him into his office at the beginning and told him "Your job is to get better. Our job is to take care of you. Don't worry about anything." Jason missed two days every other week, plus half days here and there for tests and other appointments, but his paycheck never changed a penny. I don't think they would be able to do that for a transplant. He wouldn't be able to work at all for at least a month, more likely 6-10 weeks. There is no ALFAC type insurance offered at his company, and my job is roughly 8-10 hours a week at just above minimum wage.
So couple that with insurance maximums, and the possibility of him being out of town and I am literally shaking with fear right now. Whatever he is going through, my place is at his side. If he is sent out of town I don't know how I can handle it - we certainly can't afford two residences.
His life is priceless to me, but there are realities to face. Its terrible that the money seems to be my biggest fear right now, but I think that its my mind protecting me from going down other paths that I'm not ready to face.
I do have a ray of hope in all of this, and I really hope that the mods will forgive me and understand why I have to go down this road. If it is inappropriate, I'll understand if it gets deleted.
In our church, when children reach 12 (I think) they are old enough to receive a Patriarchal Blessing. You can think of this as personal, direct revelation. Quoting: Every worthy, baptized member is entitled to and should receive a patriarchal blessing, which provides inspired direction from the Lord. Patriarchal blessings include a declaration of a person's lineage in the house of Israel and contain personal counsel from the Lord. As a person studies his or her patriarchal blessing and follows the counsel it contains, it will provide guidance, comfort, and protection. (Most of us wait until we are adults to get them, though.)
They are not to be shared casually, but I think it is okay for me to tell you that in Jason's he was told that he was sent to this Earth with a special mission to fulfill, and that when he has completed it, it will be reveled that that was the mission. In other words, he would know when his job was finished. I have asked him countless times since this began last year, and he still insists that he's not done. (His blessing gives no hints to what this mission may be, but other parts of it talks about leadership that I don't think has happened yet as well)
I can't really make sense of it; I believe with my whole heart that his blessing is divine truth, but I don't have faith that I can survive this, and that he will as well. I guess it is a war between heart and mind.
The last time I fought that war so viciously was just before Jason and I started dating. We were best friends, and he was 3 years younger than me (nothing now, but when I'm 22 and he's 19...) I can remember going back and forth for days, weeks - between heart and mind- about the situation. I knew that if we did start dating and it ended up badly, I would lose my best friend; but if I didn't take the chance, what would I be missing?
I let my heart decide that time, and it was the right choice. I hope my heart wins this one too.
If you made it this far, I commend you and again, I am sorry to posting such depressing stuff. I already feel a tad better getting it all out. Not exactly things that I can comfortably vocalize. I am so grateful to be a part if this family.