A Notable Experience Today

I woke up last night with my eyes stuck shut.  Inconvenient, yes, but nothing major, nor surprising.  3 out of my 4 kids have had goopy eyes in the last 2 weeks, so I figured it was my turn. I washed them out and went back to bed.  I woke up at 3 with the same thing.  Again, I went to the bathroom to wash them out. I looked up into the mirror and saw  my right eyelid was starting to swell shut.  Fear welled up inside me.  This was the same eye that swelled shut 4 months ago.  And it started in a similar way.  It gradually swelled throughout the day until it was sealed shut the following  morning.  I started to cry and pulled myself together, debating whether or not I should wake up Cory.  I went back to bed and my emotions got the better of me.  Cory woke up and, as I told and showed him what happened, I sobbed as he held me.  I felt so scared.  Again, my husband worthily administered  a priesthood blessing in which, among other things, he blessed me to feel calm and at peace that I could sleep.  We both fell back asleep.

I went to the doctor this morning and got drops for pink eye.  The swelling in my eye has gone down.  Logically, I knew when it happened it wasn't the same thing starting over again.  But, sometimes emotion overtakes logic.

I went to my first radiation appointment tonight.  It was actually what they call a "dry run", setting me up as if I'm receiving the radiation to make sure everything is as it needs to be for when we begin the actual treatments next Monday.  I was in the bathroom washing my hands waiting to be called back and, I was looking at my reflection in the mirror, I thought how grateful I felt to my eye for being so resilient.  Earlier today, I was practically cursing my right eye.  But, as I looked at it tonight, not only did I feel grateful for a body that has gotten  me this far, I felt grateful to it.  I was reminded of what a gift my body is.  Lately, I haven't been so grateful for these mortal bodies.  Not only have I at times felt betrayed by and frustrated with  mine, I've been discouraged by McKay's eczema I can't get under control and Clara's congestion she's had since she was about a month old.  It really has been the cause of much anxiety.  But, tonight, the Lord sent another tender mercy when he reminded me of the gift our mortal bodies are.  I thanked my eye for hanging in there with me, for still being able to see and for healing.  I thank my body for being strong and withstanding all it's been through.  Of course, as I thank my body, I am thanking the Creator of our bodies.


All this from a swollen eye.

We Believe in Miracles...The Journey, Part II

I arrived at GWU Hospital about 10:30 pm.  I was hungry and, since over the last couple of days I had been "NPO" (non per os; nothing by mouth) several times, I figured I might be again for a possible surgery the next day. I asked for a snack...which turned out to be the last solid food I'd have for about 36 hours! I flipped on the TV to take my mind off of the fact that I had no idea what was in store and came across and old "The Office" episode.  Perfect!  It had me laughing out loud.

No time was wasted.  Someone from the ENT team came to see me.  Then the opthamologist paid me a visit.  He had to pry open my eye and examine it.  I hadn't looked out of that eye for almost a week, so I was glad to find that I could still see out of it when he held it open!  And another tender mercy...I wear contacts.  I put them in every morning and take them out every night.  For some reason, the Wednesday my eye started swelling, I didn't put my contacts in that day.  I know it was more than just for "some reason"...just another detail the Lord took care of. At about 1:30 am, I was taken for an MRI. I had been told before I was transferred that this would be necessary, and I was trying not to panic.  I am claustrophobic and couldn't imagine being shoved in a tiny tube for 45 minutes to an hour.  I laid down on the table and about lost it when the first thing the tech did was close a cage over my head before shoving me in the tube.  No one had warned me about that!  I found myself tapping into the same abdominal breathing and relaxation techniques I've used through 4 labors.  There were some moments of panic as I lay there, closing my eyes, focusing on breathing, and saying constant prayers in my head.  Here I was having been through one surgery, probably facing another, and I was worked up about this ridiculous MRI.  Once again, the Lord helped me get through that experience.  When the tech came in over the speaker and said, "We're all done", I was so relieved!  In fact, those have been my favorite words over the last few months as various procedures come to an end! I went back to my room to try to sleep before the unknown of the later morning arrived.  "Try" to sleep being the operative word.  Let's be honest; no one can sleep well in the hospital. Nighttime was always anxiety-inducing.  Once I got home, I still found myself having residual anxiety every night.

I woke up around 6:30 am and called Cory in somewhat of a panic.  He was planning on helping my mom get the kids off to school and getting to me around 10 or so, but I asked him to please come as soon as he could. Add that to the tender mercy list...Cory got there a little before 9, just as the nurse came in to tell me I was headed to surgery.  Cory administered a priesthood blessing, and we found ourselves headed to pre-op for the second time in 3 days.  As I waited in pre-op I met with the anesthesiologist, the ENT (Dr. Sadeghi), and the Ocuplastic Surgeon (Dr. Mansour).  They explained they'd be tag-teaming this surgery.  While the first sinus surgery had cleared out the polyps from my right sinuses, ears, and nose, he'd had to stop before he could do much on the left because of bleeding.  So, Dr. Sadeghi would get in there again to see what needed to be done, and Dr. Mansour would see if he could drain the orbital abscess through the nose.  If not, he explained he'd have to make an incision on my eyelid.  We also found ourselves meeting with a Neurosurgeon...what?!  He explained that, because the procedure with my eye was so close to my brain, they'd be there if needed.  I think it was at this point we started to realize how serious this was.  I was getting nervous about being put under again and just kept holding Cory's hand.

I woke up in the ICU with an oxygen mask on (I hate those things; they make me feel claustrophobic) and hooked up to all sorts of leads. They were calling my name to rouse me, and I was in and out for a bit.  I asked where my husband was.  They called Cory to come in and I took his hand. He had to leave again for some reason, but I was still in and out.  He came back, and they explained that they would have to do a lumbar puncture (spinal tap).  Due to the location of the abscess (so close to my brain) and something that "lit  up" on the MRI, they feared meningitis.  So, a few hours after coming out of surgery, I was being prepped for a spinal tap.  Cory had to leave for that.  I remember being curled up in the fetal position and several people coming in to help me with the procedure.  One man, whose face I never saw and whose name I don't remember, said he was there to help me and asked if I'd like to hold his hand.  I did.  Seriously, he was like an angel.  I squeezed his hand and he and the doctor talked me through everything as it was being done. Towards the end I started to feel more pain and began to panic, so my "angel" put a little something in my IV.  That made me really loopy and slowed  my heart down, so back on with the oxygen mask (still hate that thing).  My nurse Justin was incredible.  He was so compassionate and kind.  I spent that night in the ICU.

What We're Working With

So, here's the latest.  We met with Dr. Mark Levis at Johns Hopkins.  He mentored our doctor, Dr. El-Shami, during his oncology fellowship for 4 years.  He was the one who favored a transplant at this stage, while Dr. El-Shami is unsure.  Because Dr. El-Shami respects and trusts Dr. Levis's opinion (and he's been consulting with him throughout my treatments), he sent us to consult with him. We made the trek to Baltimore.  Dr. Levis spent about an hour with us, telling us a little bit more about my disease, what a transplant entails, answering our questions and concerns.  We appreciated the time he spent...and left with our heads spinning.  It was emotionally exhausting.  It reminded me of the first time we met Dr. El-Shami.  We were overwhelmed as reality set in -- we were meeting with an oncologist, a doctor no one wants to add to their repretoire --, we found out  my diagnosis was still somewhat unsure, and I left with a bone marrow biopsy (a very pleasant procedure).  At least this time I didn't have a biopsy; just lots of blood drawn.  The gist of our conversation with Dr. Levis is that he believes this cannot be cured with chemo alone and, because I am a good candidate for a bone marrow transplant (age, health, likelihood of a perfect match with 5 siblings), that is what gives me the best chance of cure.  I asked him why he thinks we should and Dr. El-Shami doesn't.  He said experience.  I emailed him last week with a question about some genetic testing I knew had been done on my tumor (myeloid sarcoma) sample.  This was his response:

We use those genetics tests to classify the risk for patients with "typical" AML (i.e., AML with leukemia cells circulating in the blood, and coming out of the bone marrow).  In the literature available to us, there are too few cases of myeloid sarcoma where the genetic information is known to be able to predict how those changes influence the prognosis, so honestly even if we had the information on your tumor, I don't think it would help much.  The simple truth is that you have a very rare cancer, and we are forced to rely on our direct experience with these tumors.  I presented your case to our weekly leukemia meeting, with 6 other leukemia faculty.  Of the 7 of us, 6 were firmly in favor of transplant, while 1 was unsure.  This is not to say that you don't have a chance at a cure with just 2 more cycles of HiDAc and no transplant- its just that from our experience, patients with myeloid sacrcoma tend to relapse more readily than other AML patients, so we prefer to transplant them to maximize their chances.

We made an appointment to meet with Dr. El-Shami for the next week and he talked to us for about 45 minutes.  He showed us some data that he had used in presenting my case.  It represented a small sampling of people with AML, all older than me (the average age for AML is 60).  Not all had the tumor like I had.  Basically, it reiterated what we've been told over and over; I'm an unusual case.  Not unheard of, just rare.  As such, there's not a lot of literature to go off of in my treatments.  Dr. El-Shami said how incredible it was that I came through both the induction and consolidation chemo rounds relatively unscathed.  He said he could have a patient my age with my same numbers (cbc counts), feeling horribly sick and in the hospital with IV fluids and antibiotics.  He said I proved to be "one tough cookie".  I absolutely know it is from the many, many prayers offered in our behalf that I was able to tolerate such intense chemo so well.  That being said, he says it seems that my body could withstand the intensity of a bone marrow transplant, but he is not convinced it is necessary at this stage.  We respect his opinion, and we respect the experience and opinion of Dr. Levis.  Dr. El-Shami said he would also consult with Dr. Kantarjian at MD Anderson in Texas, which (as I looked up later) is the #1 cancer hospital in the country.  He is going to get back to us early this week with his opinion.

We do know that, either way, I am not finished after radiation (which I will start this week).  If we decide not to do a bone marrow transplant, I will do 2 more rounds of consolidation chemo (5 days of outpatient infusions, followed by blood checks twice a week and transfusions as needed).  As we gather information from all our doctors, we've also been to the temple, fasted, and are praying earnestly to seek Heavenly Father's guidance in making this decision. 

Making a Decision While Riding a Rollercoaster

So we are faced with making a decision neither Janna or I really want to make.  There is no right answer, because it's a gamble however you look at it.  There is no way to know what will come with making this decision, as either choice could lead toward a cure, or lead toward, well, not a cure.

The doctors have asked us to consider having Janna receive a bone marrow transplant. This is a multiple month long procedure - not invasive at all, but it takes months to years to recover from.  But, it might lead to curing Janna's cancer...or she might be cured right now and we just don't know it yet.  All of the alternatives (waiting to see if it comes back, then doing a bone marrow transplant, etc.) brings it's own set of problems as well.

I think the reality of what we've been facing these past few months has started to set in with us.  It's been such a roller coaster ride - Janna having a baby (peak) to Janna needing surgery (valley) to Janna needing another surgery (lower valley) to Janna having leukemia (really, really low valley) to facing 3-4 weeks in the hospital for treatments (still a low valley) to being able to come home 6 days into her treatments (can see daylight again) to her cancer being in remission (back to the peak again) to not having to do multiple consolidation treatments (still that high peak) to being told that a bone marrow transplant is the only way to save Janna's life (pretty much just fell off the roller coaster track) to now being told that, well, it's all a gamble, and because of the rarity of Janna's cancer, combined with her relative health and age, no one really knows what exactly to do for her, so it's up to us now to make a decision based on conflicting viewpoints from some of the most educated people we've ever met.  This has all been in the space of about 4 months.  To be honest, I just want to get off of the roller coaster, but we're going to have to stay on for a while longer and exercise a bit of faith.

Conversation with Mac

This was a conversation that Mckay, our 4 year old had with Janna today.  I didn't realize how much he really understood about what was going on.  Apparently much more than I gave him credit for.

Mac: "I wish you didn't get sick."

Janna: "I know, me too.  How does it make you feel?"

Mac: "I felt afraid when you were in the hospital."

Janna: "It was scary, wasn't it?  I felt afraid, too."

Mac: "Sometimes I still feel afraid when you go to the doctor."

Janna: "That's OK to feel afraid.  Sometimes I am, too.  And I miss you."

Mac: "I want to be with you and not with the people who are helping us."

No offense to the many friends and family that have been so gracious with their time in taking care of our family - it's been a wonderful blessing to witness just how loved our family really is.  :)

BUT, it really hit me how much that little bugger absorbed through all of this.  I know it hasn't been fun for any of our boys to see their mom go through this - it hasn't been easy for any of us - but I've done my best to try to put on a strong face and plow forward with the many work and other obligations I have.  I guess there will come a point when we should have a good heart to heart about how everyone is making it through this.  Because really, we're still right smack dab in the middle of it.  While things are looking very good (gratefully so), I have to remind myself that there is still a long way to go.  And it's not just Janna's physical healing that needs to occur - we're going to have to help our boys overcome lingering feelings of fear when mommy goes to the doctor - or even when mommy doesn't feel very good.  

I think the roller coaster ride this has been has kind of made me forget just how close we came to losing Janna.  This all started just about 3 months ago.  From having a full blown, extremely aggressive (and

 rare form of Leukemia) cancer attacking Janna's body to having it be in complete remission in the space of about 6 weeks makes things seem a bit unreal.  Add real life obligations to the mix, and none of us have really had any time to really think about what just happened - and continues to happen.  

In short, Alex Rasmussen, Lucas's 11 year old cousin and a cancer survivor himself, said it best - "Cancer Sucks."