By way of quick update, we're heading out to Utah next week. I meet with the transplant team on the 3rd. We're not sure yet when I will be hospitalized to start the process as there are a few preliminary things that need to happen (finding a match, insurance clearance, labs, etc.). My awesome brothers and sisters all got their lab work done this week to see who might be the lucky winner: A bone marrow match. I do not take for granted the fact that any one of them is willing to do this for me. If none of them are a match, we have to go to the national/international registry...but hopefully we don't have to go there (it would just prolong the process). As always, we'll update again soon.
Oh, and if you're curious what this whole bone marrow transplant thing entails, here's a link to a summary from the Huntsman Cancer Institute in Salt Lake City, Utah, where I will be treated.
Thursday, June 27, 2013
Tuesday, June 25, 2013
Sunday, June 23, 2013
Fundraiser
This is Janna and Cory's sister-in-law and I am asking for help from all of you out there in blogger land.
With the impending bone marrow transplant Cory and Janna are looking at some major expenses. Janna and Clara will be flying out to Utah while Cory brings the boys out in their car. Also Cory will be flying back to DC for work during this time. This will be a huge expense.
I am not sure of their insurance but I am sure there will be a lot of co-pays and other expenses that will be incurred during her stay in the hospital. There will also be many trips to and from the hospital once she is out to check her blood levels and such.
As the Martins started on this journey I was wanting to help but wasn't sure how. Cancer doesn't just hit your physical health, it impacts all facets of life. After talking with my husband I set up a fundraiser to help the Martins with one area, one I knew would take a big hit, the pocket book. We have set up a fundraiser to help Cory and Janna and ease one burden they are dealing with. Funds can be given anonymously and no amount is too small. If everyone out there would give $5 that would make a big dent in the expenses that they are facing.
Cory and Janna have been blessed with a great support system that have helped them so much on the journey thus far. Thank you to everyone who have helped ease their burden!!!
Fundraiser link.
With the impending bone marrow transplant Cory and Janna are looking at some major expenses. Janna and Clara will be flying out to Utah while Cory brings the boys out in their car. Also Cory will be flying back to DC for work during this time. This will be a huge expense.
I am not sure of their insurance but I am sure there will be a lot of co-pays and other expenses that will be incurred during her stay in the hospital. There will also be many trips to and from the hospital once she is out to check her blood levels and such.
As the Martins started on this journey I was wanting to help but wasn't sure how. Cancer doesn't just hit your physical health, it impacts all facets of life. After talking with my husband I set up a fundraiser to help the Martins with one area, one I knew would take a big hit, the pocket book. We have set up a fundraiser to help Cory and Janna and ease one burden they are dealing with. Funds can be given anonymously and no amount is too small. If everyone out there would give $5 that would make a big dent in the expenses that they are facing.
Cory and Janna have been blessed with a great support system that have helped them so much on the journey thus far. Thank you to everyone who have helped ease their burden!!!
Fundraiser link.
Wednesday, June 12, 2013
Leap of Faith
After a lot of prayer (a lot), fasting, discussion, thought, and not feeling sure going either route (transplant or more chemo), Cory and I felt like we needed to make a decision and move forward with it. We knew once we started moving the Lord could help us know if that was the right direction. Either way was a gamble. I kept thinking, "Is the cancer going to kill me, or the transplant?" We've been told this kind of cancer with the sarcoma tends to relapse easier. There are also a lot of risks involved in a bone marrow transplant. We also have faith that whatever happens whichever way, it would be OK. Don't get me wrong...it doesn't mean we're not scared. Sometimes downright terrified. And it doesn't mean that sometimes our faith hasn't faltered. But, we have to let faith override the fear. Otherwise, what are we left with? The Lord has been with us and will continue to be. We have faith in His plan.
With all that said, we decided to move forward with a bone marrow transplant. We are going to do it at the Huntsman Cancer Institute in Salt Lake City, Utah. I have an appointment to meet with Dr. Paul Shami (at Huntsman) next Wednesday the 19th. I'll fly out to meet with him then return home. Assuming he's also in favor of a transplant being my best bet for a cure, we'll then work to get all of us out there ASAP.
This is a recent email response from Dr. El-Shami:
Hi Janna,
I support your decision to proceed with transplant. I have been on the fence simply because of lack of reliable data to recommend for or against transplant without hesitation. Let's see what the folks at Salt Lake will think. Dr. Kantarjian of MD Anderson also recommended transplant (though yet again a 'wet' recommendation). Let me know if you need any help getting all the records to Utah on time. But it should not be a problem.
Keep me posted.
More as it unfolds.
Saturday, June 1, 2013
We Believe in Miracles: The Journey Part III
Before I left the ICU the next morning, we had what would be a final visit from the neurosurgeon. Again, he told me he was still "waiting in the wings". Nice guy, but he was becoming like the grim reaper. Nothing personal, doc, but I'm glad we didn't have to see you again. Fortunately, I cleared the spinal tap with no meningitis.
After I left the ICU, the next couple of days until I was discharged on Friday were somewhat frustrating. We just had to wait. Infectious disease wanted to wait for some labs to see what kind of bacteria we were dealing with, the ENT team was waiting on infectious disease, and the Opthamologist was just thrilled when he came to see me the day after surgery and saw how much better my eye looked.
Cory affectionately tagged this, "Janna's kool-aid lip". Not the most flattering picture, but also not too bad considering I'd had two surgeries on my face in 3 days...and hadn't showered for, uh, several days. I missed my kids and worried about how they were holding up, although I'm grateful I didn't have to worry whether or not they were being taken care of. Grandma was being mom while Cory spent long days with me and went home to sleep. I worried I would wear out my mom. She had planned to come help for a week with a new baby -- not be completely in charge of my family. Her week-long visit kept getting extended as the story continued to unfold. I am incredibly grateful for her willingness and ability to be here to help us. I horribly missed my newborn daughter and worried she wouldn't know who I was. Cory brought in pictures and videos of her on his phone. I was grateful she'd switched from breast to formula with such ease -- truly a tender mercy -- but wanted to be able to hold and nurse her again. I thought I could work on getting my supply back when I returned home.
Thursday the Infectious Disease doctor told me I'd be going home with a picc line and a 6-week course of IV antibiotics. Something in my orbit lit up on the MRI, and they were erring on the side of caution as they feared a bone infection (of course, we learned later that these things showing up on the MRI -- at the base of the skull and orbit --weren't bacterial but, rather, part of the cancer). The antibiotics were such that I wouldn't be able to nurse while on them. This may not seem like a big deal, but it was to me. I mourned the loss of my breastfeeding relationship with Clara for a long time. For some reason I couldn't contact Cory, so I called my dad and cried as I told him what I'd just heard. I felt scared; scared of what was ahead and whether or not I'd ever feel normal again. My dad reminded me to look where I'd come, not how far there was to go.
Finally, on Friday, February 8 (a week after going to the hospital), I was ready to be discharged. I had my new accessory in my arm (the picc line), my pirate patch on my eye, my own clothes, the "kook-aid catcher" gone from under my nose, and everything in place for a home nurse to come show us how to administer the antibiotics and care for the picc line. Unfortunately, I walked in the door at home with another pounding headache. I held Clara, said hi to my kids, forced down a bite of two of dinner, and went to my bed. I was surprised by how weak my legs felt climbing the stairs to our bedroom. These were the same legs that carried my pregnant self up and down those stairs several times a day with ease just weeks before. I couldn't believe how weak I felt. And, for whatever reason -- anxiety, physical exhaustion, who knows -- I felt miserable. Cory called a friend to administer another priesthood blessing. They blessed me to sleep that night, which I did. The anxiety-ridden hospital nights carried over into nights at home that night and for a while, but I was still grateful to be in my home, in my bed, with my family.
After I left the ICU, the next couple of days until I was discharged on Friday were somewhat frustrating. We just had to wait. Infectious disease wanted to wait for some labs to see what kind of bacteria we were dealing with, the ENT team was waiting on infectious disease, and the Opthamologist was just thrilled when he came to see me the day after surgery and saw how much better my eye looked.
Thursday the Infectious Disease doctor told me I'd be going home with a picc line and a 6-week course of IV antibiotics. Something in my orbit lit up on the MRI, and they were erring on the side of caution as they feared a bone infection (of course, we learned later that these things showing up on the MRI -- at the base of the skull and orbit --weren't bacterial but, rather, part of the cancer). The antibiotics were such that I wouldn't be able to nurse while on them. This may not seem like a big deal, but it was to me. I mourned the loss of my breastfeeding relationship with Clara for a long time. For some reason I couldn't contact Cory, so I called my dad and cried as I told him what I'd just heard. I felt scared; scared of what was ahead and whether or not I'd ever feel normal again. My dad reminded me to look where I'd come, not how far there was to go.
Finally, on Friday, February 8 (a week after going to the hospital), I was ready to be discharged. I had my new accessory in my arm (the picc line), my pirate patch on my eye, my own clothes, the "kook-aid catcher" gone from under my nose, and everything in place for a home nurse to come show us how to administer the antibiotics and care for the picc line. Unfortunately, I walked in the door at home with another pounding headache. I held Clara, said hi to my kids, forced down a bite of two of dinner, and went to my bed. I was surprised by how weak my legs felt climbing the stairs to our bedroom. These were the same legs that carried my pregnant self up and down those stairs several times a day with ease just weeks before. I couldn't believe how weak I felt. And, for whatever reason -- anxiety, physical exhaustion, who knows -- I felt miserable. Cory called a friend to administer another priesthood blessing. They blessed me to sleep that night, which I did. The anxiety-ridden hospital nights carried over into nights at home that night and for a while, but I was still grateful to be in my home, in my bed, with my family.
Friday, May 31, 2013
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.
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.
Thursday, May 30, 2013
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.
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.
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