Wednesday, November 19, 2014

The First Big Appointment

August 28th was the big day at the Huntsman Cancer Institute with Dr. Glen— a Lymphoma specialist Shaun found. Our appointment was at 8:30am. Thank goodness the Andersons were still with us.  They got our kids up, had scripture with them, got them out the door for school, took Duke for a walk, and dropped Lincoln off at our neighbors.  He was so excited for his play date with his friend, Maron, so that always makes things easy. We had no idea how long this appointment would last but they told us to plan up 5 hours so we were so grateful for good neighbors. We got there and they did all the regular stuff—weight, height, blood pressure.  Everything looked good. (On a side note, one bonus to all of this was that instead of my usual 5-10 lbs I gain every month while pregnant I had lost a little weight, and since my belly was still growing I felt like It was ok. Maybe for once my baby wouldn’t weigh 10lbs and I wouldn’t gain 60…) 
We then met with Dr. Glen’s assistant, Andy. She was very nice.  She took down all our info about how we found the cancer, what doctors we had seen so far, my symptoms, and pregnancy.  She did a little exam checking all my lymph nodes in my arm pits, groin, and neck, determining their size so they could begin tracking them.  She then said, “This is not going to be an easy decision, and to say there is a right or wrong is not true. But you are the mother of 4 other boys and a wife and it is very important we get you better first.”  That was my first super strong wave of fear and “mother bear” moment.  I went straight into self talk mode inside my head. “Whatever...my baby is every bit as important as me and I am not just going to forget about it.  I will do everything I can to protect this child, I don’t care what you say.”  All while nodding and smiling at Andy.  I know that what she said was very true, but my momma bear was rearing her head right then. 
Shortly after Dr. Glen came in and did the exact same exam on me that Andy had done and briefly reviewed all her notes.  Dr. Glen was very nice but less of a personable person, more like an intense researcher.  Everything she said was backed up by studies and she got right to the point.  First she told us that at the very least my cancer so far was Hodgkins Lymphoma stage 2. That means it is in two parts of my body— my neck and my chest.  They would have to do more exams to determine if it was in my bone, abdomen, liver, groin, and kidneys.  That would change the staging.  She then told me that after this testing they would begin chemo immediately. You can imagine how shocked we were to hear they expected me to do chemo with my baby still inside my body when I was not even feeling sick.  
We asked them about the safety of the baby and she said there are 4 different medicines that would be used in my treatment— A,B,C, and D.  They know for sure that D cannot get through the placenta barrier and is very safe but the others can.  However, they believe it to be fairly safe for the baby.  They basically told us they wished they had tons of studies on this but they don’t. They have done it before and it has been fine, but they don’t have data yet for long term effects to the baby because those babies are still young.  They said as part of the prep for chemo they would need to do a test on my heart, liver, and lungs just to get a baseline so they could monitor them during chemo since the A,B, and C affect those organs.  You can imagine how the momma bear was feeling about baby and chemo now.
   I feel like I should share that I know that the Huntsman Institute has done and is doing great things and has saved a lot of lives.  Those doctors definitely were doing their very best to help me and they were so kind.  I know that my path and another person’s with cancer— even pregnant with cancer— could be very different.  This is simply my honest experience, personal feelings, and unique journey.
     We started making a plan to find out if I had cancer in other places.  We were very limited on what we could do because of the baby.  CT scans were out of the question because of the high radiation.  So we decided that we would do an MRI.  It doesn’t use radiation— it uses magnets instead and is much safer.  Additionally, they would do a bone marrow test to see if it was in my bone, as well as all the baseline tests to prep for chemo (heart, liver, and lungs). They also wanted me to meet with an OBGYN specialist to get an ultrasound and discuss different options we might have for the baby. Wow. Did I mention that I was sick of doctors and tests?  
We scheduled the appointments but did the bone marrow test right then.  That was a crazy test.  I had to lay on my side while she numbed me up.  This hurt the worst by far.  I thought it would be like a shot, but no, it was like what I imagine getting stung by a wasp 20 times feels like.  Finally, I was numb enough to stick what looked like a mini tent stake into my hip bone and get a little piece of bone and marrow.  It didn’t really hurt, it was just a lot of pressure and she was rocking me hard to get the stake into the bone.  It took about 30 minutes and then we had to sit there for 20 more minutes…which turned into 45. Shaun was going nuts and was trying to find someone in the hall.  Finally the nurse came in and let us go after confirming our next couple of appointments, and announcing they had slipped a few MORE in there—all the pre-chemo tests.  I quickly dismissed all of those and told her that we would rather wait and get the tests results back before we proceed.  She agreed and we were off.
It was about 2pm when we finally left the Huntsman.  The Andersons had found a great Raw foods place to eat and were waiting to have lunch with us before they headed back to Idaho.  I was a little emotional as we left Huntsmans, just trying to process all that they had told us and trying to gain control over the fear I felt.  I thought it was under control, but when we walked in the restaurant Amy and Justin jumped to their feet, and…well, I lost it. They both wrapped their arms around us.  I’m sure it was a sight to everyone watching.  We sat down and I was trying to gain control as they looked at us for answers.  I said just talk about something funny so I can stop crying.  So of course it took like 2 seconds for them to have us all laughing as they told us about their crazy morning walking Duke and how he pooped all over the neighborhood and all the things they had used to pick it up, and how a neighbor had come out and they thought he was going to get after them. The two of them animatedly telling this story was so funny and just what Shaun and I both needed.  They were so great offering to help in every way possible, even going on my crazy diet with me.  I was reminded how much support I have with all my family and friends and I can totally do this!

We got home and found the kids had done a great job getting all their stuff done, and we had dinner waiting for us from my sweet visiting teachers.  I was so grateful to have that there because I had to run James to his soccer game and Shaun ran the boys to their football games. (Just like life was normal right??)  Our ward was so great—we have had so many people offer to bring meals and others just brought meals without even a word.  I keep thinking things could get really hard and we may need this help later so I don’t want to wear everyone out while I still feel good, but these doctors appointments have been very stressful and LONG and all of the meals really saved us. I once again went to bed thanking my Heavenly Father for such a great ward family.

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