A Happy and Thankful Life


continued distractions with friends

I’m thankful for continued distractions today as I spent the afternoon with friends for lunch and a play. It was what I needed to do so I, like yesterday, wouldn’t spend the entire day in bed. I needed to talk about anything other than John and today provided that. I’m thankful for that.

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distractions

I had a work convention that I had to attend today as an exhibitor. It was enough of a distraction that I was able to get through the day. I’m thankful for that distraction as I’m not sure how I would have made it out of my bed today if I didn’t have a reason.

Last year, April 21st was a Thursday and we received the official word that John had relapsed. As I was read through the other blog and skimmed my posts, the rawness of what we went through rushed back. I wouldn’t wish what we went through on anyone. I’ve copied the post that started off our third round. I wanted to be the last because I wanted him to be cured. I never thought that it would be the last because he wouldn’t be here. He is still desperately missed and loved every day.

I know I haven’t posted in a few months. When things are quiet and stable, I tend to not want to post. This blog is a way for me to get out of my head everything that is going on his treatment. It’s therapeutic for me. And even though I know it’s not rational, I don’t want to jinx it by posting about things continuing to go well. After John’s issues with his blood clots and subsequent treatment, things have been quiet. He would go in for monthly blood tests, get the all clear and continue to go on with his life. He was still on all his medicine and still had his immune system suppressed to limit GVHD. We visited his family for Christmas and he received his Bachelors in March. When people asked how things were going, I’d answer “Quiet. Other than his GVHD rash, everything to stable and quiet.” Not anymore.


On Monday, we went in for his normal monthly visit. He had his blood drawn, we were called back to a room and after chatting with the nurse a bit, we waited. And waited. And waited. John was getting antsy and I told him to calm down because there is always a good reason any of the staff is running behind. We never know what is going on in other rooms. What news are other patients receiving. His doctor walked in with a serious look and for a moment, I thought he was trying to play a joke on John. He wasn’t. He told us that John’s counts had dropped a considerable amount from last time. His platelets were now at a 97 (normal range begins at 140).


There is never a good reason for this to happen. The doctor told us that it could mean that the bone marrow took a hit from a virus and it has to recover or that he has relapsed. We needed to wait to find out. He wanted to retest John on Thursday to see if there was any change. John was told to stop taking the coumadin in preparation for a possible bone marrow biopsy as well as to stop the prednisone and prograf to allow the bone marrow to start to recover. The thought of relapse silenced us. I saw the mixed look of defeat and shock on John’s face. I’m sure mine had a similar expression. Things were going so well. You’d think we’d learn.


We left the hospital in shock with an appointment scheduled for today. John wasn’t in a good place. I had to give him a big kick in the pants. No, a relapse is not good. However, this is not the end of the line. There are additional treatments they can do. The thing with cancer, and with John, if you have a fighting chance, you have to give it your all. Once you admit defeat, there is nothing you can do. Medicine may heal your body, but can’t heal your spirit. By the next day, he was ready to fight whatever it is. 


It was a really long wait to this morning. We prepared for the worst and continued to pray for the best. We arrived at 7:30am, John had his labs drawn and was then taken back to a biopsy room. His labs didn’t change much from before. This didn’t surprise me. They gave John ativan and some pain medicine to help relax him as well as help with the pain. He becomes quite talkative with the ativan and I can normally tell when it hits him. The main NP came in and told us that the doctor would be in after to discuss the paths, depending on the results. After giving the medicine time to take effect, they did the biopsy.


More than an hour later, his doctor came in to talk with us. The leukemia is back. Even if we were prepared, it’s so devastating to hear those words. We have been given a plan of attack. During the last few days of not being on immuno suppressing drugs, John’s GVHD has flared up. This means that his immune system is fighting. The idea is to not suppress the immune system and let it go full force at attacking strange cells, including the leukemia cells. Ideally this will work to put him back into remission and get rid of those resistant cells. They will monitor him closely to make sure the GVHD doesn’t get too out of control. However, they are hopeful that this GVL (graft versus leukemia) will do the trick. It has worked in other patients. If it doesn’t work, there are other options available. He is just wanting to use John’s immune system to do what it is designed to do.


As I wrote before, this was not how we thought the week would end up. However, he has relapsed and we have to fight on so that he can live on. I’ll begin to post updates again as things happen. I just ask for continued prayers that John has the strength to fight this, and the love, trust, support and guidance he needs from me, friends, family and the hospital team to continue this fight.
Round three…here we come.


calender

As the year mark inches closer, I find myself more at a loss for words. Last Spring, we were celebrating John’s graduation and my birthday. We were more than a year out from his transplant and he was still in remission. We thought that he was inching, day by day, to his cure date. Not to something far more serious and grim.

All that is on my mind is that on the 21st, it will be a year from when we found out that he had relapsed. Then two months and 3 days later, he died. It’s been such a long year but the year mark has come so quickly. I’ve found that I can normally talk about John without crying now. However, in the last two weeks I had appointments with people that knew our story – but I haven’t seen for a year. I couldn’t explain what happened without crying and the rawness of my grief rushed back. I didn’t think it would be that hard. I know the memory of the dates will begin to fade at some point. But for now, the pain is too fresh and makes my heart ache.

For me, those milestones and dates have power over me. As humans, we mark our passage through life in different ways. I have my calendar. In the last few days, I’ve been looking through it and making notes for plans. It used to be that when I bought a new calendar, I would mark our anniversaries first – dating and wedding. Now, I avoid June and November. Light the Night and Pelotonia are now what go in first. I don’t think it will ever feel right. I want to go back to what it should be. Not what it is.


The eyes have it

“Your eyes have improved!”

I never dreamed that I would ever hear this. I never thought that hearing improvement about my eyes would even be possible. But I heard that today and I’m estatic!

About ten years ago, an ophthalmologist told me that if I didn’t get my glaucoma under control, I could start losing my eyesight and become blind in my thirties. That was a very sobering statement for me. It was terrifying.

I first got glasses when I was in 4th grade. Without my glasses or contacts, I only see shadows a foot away from my face. In middle school, high pressures during an exam led to multiple visit and tests at the local univeristy’s hospital. They determined that I had glaucoma and should just monitor it. Which we did until I started having issues in college with my eyes. That is when the ophthalmologist said it was serious. But I accepted that fact and tried to be a good patient. I took my eye drops while I had insurance and made my yearly exams with both my optometrist and ophthalmologist. I made sure that I didn’t take or do anything that could increase my pressures. I was in fear during my first field vision test. I was concerned but I knew that glaucoma was not something that happened quickly and I would have time to delay progression.

With new insurance and new city, I was directed to a new opthalmologist. They repeated many of the tests that I had 12 years previously and added a few new ones. One of those tests would great change things. There was a new test that measured the corneal thickness. Did you know that the everyone’s cornea isn’t the same thickness? The number from the pressure reading is how much pressure it takes to flatten your cornea. Here’s how it was explained to me: If if takes a lot of pressure to flatten your cornea, more than the normal range, then you were considered to be at risk for glaucoma. If you have a thicker cornea, it will take more pressure to flatten which can cause a false high reading. If you have a thinner cornea, it takes less pressure to flatten your cornea and a reading within the normal range may actually be too high.

I found out that day that I have thicker corneas. When my IOP readings were adjusted to account for that, I was in the high normal range. Because I had no damage to my optical nerve, I am now considered glaucoma-suspect and just need to have periodic tests to monitor. Since I had that great news, I  haven’t missed a check-up with the optometrist but have slacked off on my periodic tests. I am determined to get checked again within the next few months. Our eyes are precious and