Still Waiting

Quick update...we're still waiting.  The surgery went great.  The doctor wasn't concerned about what he saw in that sphenoid sinus; he said it just looked like scar tissue.  The preliminary pathology results look good.  At my follow-up yesterday they said it's all healing nicely.  As of today, as far as I know, the ENT doc had been in touch with my transplant doc to tell him that, while I need some follow-up next week, he's comfortable clearing me to continue my pre-transplant work-ups.  So, we may be that much closer to finally getting this thing going.  No dates yet.

Blessings of Cancer

Sounds strange, I know.  I firmly believe we are given trials like this so we can learn from them, although I'll admit that just what we are supposed to learn from this trial has been up for debate - and serious doubt - many times throughout the past few months.  But, I'll submit for evidence one blessing that I can see that we can continue to cultivate and receive more of over the next few months and years -

This is a picture of Gabriel and Mckay at the Days of 47 parade in SLC.  Now, nothing spectacular is happening in this picture.  No one is parting the great Salt Lake nor is anyone walking on water (it's been a long day and I haven't had much to drink, hence the references to miracles that included water).  But, hearts are drawing closer together, and I'll argue that our family is learning how to love and care for each other a bit more these days.  Now, this is apparently what we needed, and not everyone needs this exact experience to learn what we have to learn from this - but, we do.  And I'm grateful for it.

Bone Marrow transplant

My mom is now at one of the final stages in this leukemia  cancer: the bone marrow transplant. For those of you who don't know what that is, it is a operation where someone else s bone marrow is taken and put into someone else s body. The person who it was taken from will still have some bone marrow left, and it will reproduce. But, if this persons bone marrow does not match the person with cancers bone marrow, that bone marrow will not reproduce to completely eliminate the cancer. The bone marrows have to match. In this case, my uncle Andy has a match with my mom and my other uncle Scott is a "runner up". The doctors will have to load my mom up with chemotherapy to kill of her bone marrow because it is sick. Then, they will have to take some of Andy's bone marrow and give it to my mom. The operation itself is fast, but the preparation takes a while. We know we can get through this and all of your prayers have helped us and will continue to help us.

A Small Delay

Andy passed his tests with flying colors; he's the healthiest donor I could ask for!
My bone marrow biopsy and spinal fluid were all clear, which is great.  No leukemia cells.  We hit a slight glitch, however, with the MRI and PET CT.  There is a slightly suspicious spot showing up on my right sphenoid sinus (the farthest back sinus cavity, near the brain).  My transplant doctor, Dr. Hildebrandt, referred me to an ENT at the Univeristy of Utah hospital to check it out.  It is very possible that what is showing up is a result of the chemotherapy and/or radiation (the radiation I've received was localized to that right side of my sinuses and orbit, where the tumor was).  It could also just be residual from sinus disease.  But, going into a bone marrow transplant where they wipe out my immune system, there cannot be anything that is questionable.

I met with the ENT doctor today.  I did a CT Scan as well as the nose camera (probably a more technical term for that, but that gets the point across) to see what's going on.  The CT scan did show a spotty area in that right sphenoid sinus.  The doctor said he's 90% sure it's not leukemic cells, but we have to be sure.  So, he's going to have to biopsy that area.  He also found infection and polyps on my left side which, under normal circumstances, would just be something to watch.  However, since my immune system is going to be shot, an untreated infection could turn into a major problem (especially considering how close it is to the brain).  For these reasons, I am going to require another sinus surgery. It will be an outpatient procedure done next week, July 25.  This does put a slight delay on starting the transplant process.  Rather than being admitted to the hospital at the end of this month, it may be more like the first week of August.  That is assuming, of course, that the biopsy results come back negative (of course they will).

In the meantime, Cory will be headed back to Virginia to carry-out a conference he's been planning for 6 months, I need to get  my dental clearance, and we have a BMT (bone marrow transplant) orientation.  I think we'll throw some fun in there, too.

"I Just Don't Want to Shrink"

After my bone marrow biopsy and spinal tap last week, I ended up with the dreaded spinal headache.  I didn't anticipate it, since I've had two other spinal taps in the past 6 months without any problem.  But, this one got me.  Anytime I was upright -- sitting or standing -- my head pounded and I felt completely sick to my stomach.  I could hardly eat anything, and couldn't keep down what I tried to eat.  I had to go back to the clinic twice for IV fluids.  I'm not going to pretend I was a hero; I was fairly ticked to be feeling so miserable.  I figure there's plenty of feeling miserable ahead so I didn't really want to do it now.  I was so frustrated that I couldn't take care of my kids...because, again, plenty of that ahead.  The last week has pretty much consisted of my parents or Cory taking me to doctor's appointments (because I felt too sick to drive myself), and staying horizontal as much as I could.  I've hated feeling like a burden already because there's long road ahead of having to completely depend on Cory and my parents and brothers and sisters to take care of my family and myself.  That is the hardest part of all this.  Friends, this is not something I want to do. Some days, I just have to let myself admit that.  I'm scared for what's ahead for me physically, and I don't want my family to have to do this. But, as my mom says my wise grandma said, "You don't gotta wanna, ya just gotta." So, we gotta do this.  And we won't do it alone.  Besides the blessing of help from my family and friends that are physically here with us, we know there is extraordinary help beyond what we can see.

We did have a brief moment where it looked like a transplant may not be necessary. Based on something Dr. Shami saw in my blood recently, he wanted to do some genetic testing to see if we might be able to find that I have a low-risk leukemia (meaning low risk of relapse). If this were the case, I would just need a couple more rounds of consolidation chemo and we'd be done.  And right now, a couple rounds of chemo sounds like a cakewalk compared to a transplant. Oh, how we prayed and hoped this would be the case.  We met with Dr. Shami yesterday.  The genetic tests came back negative, which means we move forward with the transplant as our ultimate hope for a cure.  I was disappointed.  Maybe disappointed is an understatement.  Cory reminded me that now is the real test of our faith.  Heavenly Father wants us to ask for things, for miracles even.  And miracles do happen; we've seen that already.  For now, though, that was not the particular miracle we were to see.  Now, Cory reminded me, the test of our faith comes as we respond to what we do have to do; not to what we wanted.  Apparently, the Lord has a greater purpose for us in what's ahead. And it is in our Father and Savior that we place ALL of our trust, confidence, hope, and faith. I keep thinking of a recent talk by Elder David A. Bednar, an apostle in our church.  He spoke about conversations with Elder Neal A. Maxwell, also an apostle in our church, who battled leukemia himself.  Elder Bednar told the following:

During the course of our conversations that day, I asked Elder Maxwell what lessons he had learned through his illness. I will remember always the precise and penetrating answer he gave. “Dave,” he said, “I have learned that not shrinking is more important than surviving.”

His response to my inquiry was a principle with which he had gained extensive personal experience during his chemotherapy. As Elder Maxwell and his wife were driving to the hospital in January of 1997, on the day he was scheduled to begin his first round of treatment, they pulled into the parking lot and paused for a private moment together. Elder Maxwell “breathed a deep sigh and looked at [his wife]. He reached for her hand and said … , ‘I just don’t want to shrink’” (Bruce C. Hafen, A Disciple’s Life: The Biography of Neal A. Maxwell [2002], 16).

In his October 1997 general conference message, entitled “Apply the Atoning Blood of Christ,” Elder Maxwell taught with great authenticity: “As we confront our own … trials and tribulations, we too can plead with the Father, just as Jesus did, that we ‘might not … shrink’—meaning to retreat or to recoil (D&C 19:18). Not shrinking is much more important than surviving! Moreover, partaking of a bitter cup without becoming bitter is likewise part of the emulation of Jesus” (Ensign, Nov. 1997, 22). (To read Elder Bednar's full talk, "That We Might Not Shrink" , click here).

Elder Maxwell was referring to a scripture found in the Doctrine and Covenants, a collection of modern-day revelation scriptures.  In Doctrine and Covenants 19:18, the Savior says this of His suffering in Gethsemane:

"Which suffering caused myself,even God, the greatest of all, to tremble because of pain, and to bleed at every pore, and to suffer both body and spirit -- and would not I might not drink the bitter cup, and shrink --"

I've thought of that phrase over and over the last several months: "I just don't want to shrink".  I've faltered and whined; I'm human.  I've said I don't want to do this.  Always, though, I have to pull myself back to that phrase.  There is a higher purpose in this, as there is for anything any of us have to face in this life.  We all have stuff.  All of you reading this have your own burdens you are bearing.  You keep going, and we'll keep going.  And we'll all help each other along the way as we become who the Lord knows we are.

We Have a Match

It's a strange feeling...feeling like my brothers and sisters were all contestants on a game show, and I wanted all of them to win.  In the end, I'm so grateful all of them were willing, and grateful that one of them is indeed my match: My oldest brother Andy (with my younger brother Scott being the runner-up :).  So, here we go to embark on this journey together.

We all made it to Utah, and Cory and I met with the transplant doctor (Dr. Hildebrandt) at the Huntsman Center.  Things are really rolling now.  Now that we have my match, there are several things that need to happen in the next couple of weeks. First, Andy has to be cleared (labs, physical, etc.), and I have to have several things done.  I get to do another PET CT and MRI, as well as a bone marrow biopsy (looking forward to that pleasant experience again) and a spinal tap (3rd time's a charm), all to make sure the cancer is still in complete remission.  I also need dental clearance and a few other doctors to clear me, all to make sure I'm as healthy as possible.  Assuming everything checks out (of course it will), we're looking at being admitted to the hospital in the next 2-3 weeks.

As far as we understand so far, here is what we're looking at for the next several months.  The first step of a bone marrow transplant is called the "conditioning regimen", which involves either chemo alone, or a combination of chemo and radiation (depending on what the doctor thinks is necessary).  Often this is looked at as killing off your bone marrow and immune system.  However, I truly believe there is a lot of power in positive energy, and it has worked for me this far.  I didn't look at chemo as poison; rather, it was the medicine I needed to get better.  When I first heard the term "conditioning" for loading me up with chemo and radiation (my treatment will most likely involve both), I thought that was the world's worst euphemism. But, as I've thought about it, that is exactly what it is: A conditioning.  When someone is conditioning for a major athletic event, they are preparing their body for the task ahead.  That is exactly what the week(ish) of chemo and radiation will do for me.  It prepares my bone marrow to receive the new.  That first week of conditioning will be done in the hospital.  The day they do the transplant will be Day 0.  It is not invasive.  It is given to me like a blood transfusion.

As for Andy's role as my donor, he will receive a course of shots (I think for 4 or 5 days) that spur his bone marrow production. As his marrow produces an excess of stem cells, they then spill over into his blood.  He will be hooked up for several hours while blood is drawn from one arm, the stem cells are filtered out, and the blood is returned to his other arm.  This is known as a Peripheral Blood Stem Cell Transplant.  While it is not invasive for him, either, he can experience bone aches as his bone marrow production kicks into high gear. Having experienced this on a small level in April, I've told him he really ought to take the pain meds they will offer from the beginning.

After all that, things really get exciting, but I'll save that for another day.  For now, I am looking forward to a night away with Cory tomorrow (a big thank you to my parents who offered it to us, and provided the hotel and babysitting) where we will enjoy being together in a setting other than a hospital or doctor's office.