Friday, February 23, 2007

Diagnosis: 2 months

We met with Dr. Westervelt this morning and he basically gave me two months to live, possibly three. I admit I was thinking it might be a little longer than that, but I also went into today knowing that AML is extremely aggressive and it probably wouldn't be a great prognosis. He did offer us one option, and referred to it as FLAG treatment with a "booster" of stem cells from my brother. They want to admit me on Monday. The drugs he mentioned were either ones I've had before or are similar in their structure to ones I've had before, and sounded very much to me like induction treatment, which you would do when a person first presents with the disease. One of the drugs works by targetting a specific molecule within the cancer cell that may not even apply to me. He said it has a very poor chance of putting me in remission, but it's a chance and could buy us some time. It also carries a pretty high mortality rate, and being familiar with the drugs (high dose Ara-C and idarubacin (I've had daunarubicin)) I am fully aware of what quality of life would look like for what would most likely become a six week stay in the hospital. I do not want to spend the next six weeks of my eight weeks of life going to hell and back once again, away from my family and especially my baby. I've pretty much concluded at this point that it's not an option I'm open to trying.

In the meantime, I also received a blood transfusion. My iron had dropped over a full point in the past week, regardless of the Aranesp shot. In retrospect, Aranesp should not be given to patients with active myeloid leukemia and from my understanding has just aided in feeding the cancer. The blood is always an energy boost. It's important to note that the 2-3 month outlook is with regular transfusions. It's not just going home and doing nothing. I expect things would progress much faster in that case.

My husband has been on the phone all day and we put a call into my primary oncologist, Dr. Perry. He is out of the office until Tuesday, but very graciously called us from his home tonight. He was not pleased with the information I was given today and asked if we had been informed of "Phase One." We aren't familiar yet with what this is, but he is researching this weekend for me and will call us on Monday. He sounded very hopeful. I am so thankful for my team of oncologists at MU, and trust their expertise, especially that of Dr. Perry and Dr. Doll, who both specialize in blood cancers. They just aren't the same as a tumor based cancer and I like knowing that their main focus is on what I have specifically. He's given us the ray of hope we so desperately needed today.

Another option we are considering is alternative treatment through a clinic in Scottsdale. At first this door was closed to us due to the fact that the treatments would most likely not be covered by insurance. We've had a few families contact us and basically tell us that they don't want money to be an issue. I have been amazed and incredibly blessed by their willingness to share what God has given them, and there really aren't words to express the amount of gratitude we feel. We mentioned one of the possible treatments to Dr. Perry and he said he was aware of them, so he could give us more information on that as well. I just wanted to leap for joy when I heard that, because I wanted so badly to talk to someone who knew more about it, and here is my oncologist aware of alternative procedures.

We are also looking into using Mannatech products to boost my immune system. We've heard a lot of good things, and trust that God can use those products for healing if He so chooses.

At this point we just ask for prayer that we will be able to make the correct decision. We don't have a lot of time, and I am anxious to hear from Dr. Perry on Monday. I trust his opinion greatly. Thank you for your e-mails and notes of encouragement. You've been a blessing.

Wednesday, February 21, 2007

The Results

Heaven got a lot closer today. We received the preliminary results from Friday's biopsy. The cancer has returned at 14% currently. We won't have detailed information until the cytogenetics are back from California (about 1 1/2 weeks), but it looks like the same one as before. We have an appointment on Friday to discuss options with the doctor. At this point they are few, and not very hopeful. I am not a candidate for high-dose chemo, which would be a normal procedure at this point, because I've already had every chemo drug, and have most likely built up a resistance. (Plus, I'm at a lifetime limit for some of them.) A second stem cell transplant only holds about a 5% success rate. They mentioned using chemo treatments to prolong life, but I think any hope of a "cure" would rest in experimental clinical trials, which aren't covered by insurance and thus really aren't an option in my mind. We have a lot of decisions to make over the weekend -- the kind couples in their 70s make. It all seems very unreal at the moment. It's hard to be hit with your own mortality. A part of me wanted so badly to believe that I had beat the odds, even though I've been a wreck this past week, knowing somehow that the news wouldn't be good. I think that is a sign of God's grace for me -- I needed to know deep down, because it is just too much to bear all at once.

We are heartbroken. This is not the news we wanted to hear. We wanted to raise our son, to grow old together, but God has different plans for our family. And as much as we don't understand them right now, we know that He is sovereign over this as well. Please pray for us, and for my family especially. My part in all of this is rather easy. I get to die and be with my Savior in glory. I get to miss out on all the suffering this world holds. It is my family who bear the grief and the pain day in and day out. It is for them that my heart breaks.

Hold your loved ones a little closer for me today. Live life a little more -- wear your dressy clothes around the house just because life is really short and stains don't really matter. Don't get impatient about the little things.

Someday we'll understand why.

Saturday, February 03, 2007

Approaching 90 days...

We're now traveling to Barnes every other week for appointments, as hoped. On the "off" week I have bloodwork done at Ellis Fischel here in Columbia. That's been really nice. Dr. Westervelt (Barnes) recommended yesterday that I have an Aranesp shot to help build the red blood cells in my body. He said I will feel a lot better if they can get my hematocrit over 30, and my hemoglobin up as well. (It is still sitting in the 9s.) I do get out of breath easily, and I've been anemic for so long I don't really remember what it feels like not to I am anxious to see how this works. It comes with some nasty side effects, but other than the pain of the shot I've only noticed some additional fatigue. I go back to Barnes in two weeks and we rescheduled my bone marrow biopsy for that date so we don't have to go two weeks in a row. It is now scheduled for February 16th at 9 a.m. Dr. Westervelt said I will have another one done in about three months and then one year from transplant (so sometime in November) and then that will be all unless bloodwork indicates a need for another one. That will bring my total up to 10. Sounds like a nice stopping point to me. :-)

If the biopsy results are good, they will begin weaning me off of the immune suppressant I am currently taking. (Prograf, specifically). The purpose of this drug is to keep my brother's immune system from attacking my body (otherwise known as GVHD). I'm not entirely sure what to expect during this process. For now I'm just taking it a day at a time. We're still staying in to avoid illness. Strep, mono, and pneumonia have been going around at my husband's office, but thankfully the Lord has kept him in good health. I know several of you have been praying to that end, specifically -- thank you!