This is the longest time I have gone without updating my blog since its inception. So many reasons for that, but mostly I think is that I am doing pretty well and there haven’t been any super “Breaking News” moments in a while. Its more like living life, making sense of life.
Maybe lets start with an update as to what has happened in our lives since my last post in November.
Medical
I think one of the things I hadn’t really given an update on was my last PET scan that I had in October. Its always nerve wrecking making my way to the Nuclear Medicine department at the Cross Cancer Institute. As may be able to imagine, its very anxiety inducing waiting for the results that will tell me if my life will change again. For the better, worse or just stay the same. One thing I realized this time that I went, is that I have had waaaaay to many PET scans in the last 18 months. How do I know you ask? Well when the technicians remember you I think you have been there too often. 🙂
Anyways, to the results. The PET scan came back very similar to the previous one. There is still a spot at the base of my neck/top of my chest cavity that lights up like a Christmas tree. However, the doctors are unsure if this is actually cancer tissue or thymus tissue. The thymus gland is a part of the immune system that often times reacts to PET scan dye apparently. So there is still a chance that its cancerous but they are unsure at the moment. The good news about this part, is that its unchanged. it showed up the first time in my PET scans after my second surgery in June 2017 when it was 7 mm large. It is still at the same size. Praise God for that.
The somewhat more scary part of this test was that there are 2 mini new spots on the right side again. Again with these ones we are unsure if there are cancerous. Right before Dr. M. operated on me in June 2017 he did an ultrasound of my right neck to make sure he was getting to the right spots. Before he put me under, he mentioned that there were a couple of lymph nodes that may or may not look suspicious, but he wasn’t sure he was gonna be able to get them in this surgery but he would try. When I woke up, I was informed that he wasn’t able to get to them but he wasn’t worried at this time. With this scan now, there are 2 very small spots that are lighting up on the PET scan in that same right neck area. One is 2 mm and the other 3 mm, so very very small.
My cancer specific blood work has also remained pretty stable, with small dips which mean improvement. I am so grateful for this. I met with Dr. W. after our vacation that I will talk about in a bit and he was all together very happy with my progress. I think we have entered the time, that this disease is treated like a chronic illness, similar to diabetes. Where constant observation is important, but major intervention may not be.
Dr. W. mentioned to me that he would like me to enter into some clinical trials. Immunotherapy trials have shown great success with this type of endocrine tumors. Immunotherapy trials are basically getting a medication that is still being trialed that helps boost the immune system that then attacks the cancer. Again, these drugs are still in the trial phase. They have show some promising results, but they are also not really tested all that well for long term effects and potential side effects. Which is why I am a little hesitant to enter into one of these trials. I am doing so well at the moment, do I really want to take a drug that could potentially make me a little sicker?
At the moment I am also not a very good candidate for any of those trials, since my tumor load is so small. I know it kind of sounds funny, but basically what that means is that I don’t have enough cancer. Usually what they would like is a tumor that is at least 1 cm in diameter to be able to start in any of these studies.
Since this PET scan showed such great results, Dr. W. and I decided that we could extend time between my scans to 6 months. So I haven’t had another scan since October and my next one will be sometime around May. Again, this is a huge step in the right direction. As important as it is to monitor my progress, the radioactive sugar that I have to get injected into me with every scan plus the radiation from the actual scan are not the best. So if I can cut back on that I am very grateful.
That is basically it on a medical update. Mostly everything is peachy. 🙂
Emotions
Everyday life has been something that may have not been quite as peachy as the medical side of things. As I had mentioned in my post from early October, I have been struggling with some depression. In some ways that may also be the reason why I haven’t been updating here all that often. I just felt I didn’t have all that much to say.
Don’t get me wrong it hasn’t all be super depressing. There have been some really great moments since October. More on those in a little bit.
In October I saw a counselor that is provided through the Cross Cancer Institute and , thank the Lord for that, is free for me. How that whole process works, is that they call to do an intake interview, where I basically told them a little bit about me and what I am currently struggling with. After that conversation they set me up to meet with someone.
I had asked for a spiritually based counselor, which turns out wasn’t necessarily the smartest choice for me. The lady I saw was very nice, that wasn’t the issue, but her spiritual background was quite different then mine and made some things a little more difficult than they had to be. I also got the feeling that she thought that everyone who is dealing with cancer must have anger towards the cancer, that then manifests towards the people in their life. I absolutely understand why she would get that impression from me when we first met, but even after I assured her that wasn’t really what I was going on with me, she kept coming back to how I needed to address my anger and embrace it.
Anyways, I only went to her twice before stopping to go with the promise that I would call if I needed her again. Well then it felt awkward to call the cross and ask to see someone else and really I was doing well. Or so I thought. I saw her the last time, some time in November and really thought well that was great I am good now. But I was wrong.
I was doing well for a few weeks or even months but things started to compile again until Jeff asked me to please go talk to someone again. I made the somewhat awkward called and made another appointment to see someone else through the Cross Cancer. I have seen her twice now and I can already say that I am so appreciative of her. Her questions and advice that she is giving me is helping me make sense of all the emotions I am dealing with at the moment.
Life
Life itself has been well, exciting and ever changing.
In October Jeff and I along with 6 more of our friends made our way to Varadero, Cuba for an amazing vacation. We spend some much needed relaxing time on the beautiful beaches, ate some good food, enjoyed each others company and enjoyed learning about the culture, sight and heritage of Cuba.
Our family also expanded almost 3 months ago, with the arrival of my sweet, little nephew Caleb George. We were celebrating Christmas as a family on December 22 because I was scheduled to work all of Christmas, so we decided to celebrate a little earlier. My sister Melissa, highly pregnant at the time, but still not due for another couple of weeks, was complaining of back pain all evening. We didn’t really think much of it. We all went home and I went to sleep since I was to work the next day and Jeff stayed up to game with Melissa’s husband. Just after midnight Jeff poked his head into our bedroom to inform me that Melissa’s water broke. Well that was it for me for sleep for that night. I spend most of the night texting my family to get updates, went to the hospital early in the morning and met this cute little bundle of joy in the evening.
Unfortunately, the first couple of weeks of his life were spent in the hospital. He was born with something called choanal atresia, which basically means that the pathways of his nose were blocked, which was corrected with a quick 15 minute surgery. The reason he was in the hospital so long was partially because he was born around Christmas time which means most people are on vacation which definitely didn’t help with getting answers as to what needed to be done in the first place or what needed to happen after the surgery was done.
On January 8, Melissa’s original due date, Caleb finally came home. Since then he is growing faster than any of us may like but is doing amazingly well. So well in fact that his doctors are very, very pleased with his progress.
All in all, life is good. I think we have found a somewhat new normal, that is helping move away from cancer being the focus of our lives. Moving away from always being sick. Moving away from some of the fears that came when we first learned what is happening. Moving in the direction that God is leading me and listening more to His directions than ever before. Now more than every I realize how much I really owe Him my life.
He could have given me a different cancer, one that would have killed me by now. As crazy as this might make me sound, I am grateful for having this cancer. Again, would I have chosen it if I had the option? Absolutely not. Would I change it if I could? I don’t know. I think I have learned so much and I am still learning so much. I feel like I can appreciate life so much more now. I live my life with the end of it in mind. Not that I am waiting to die, but I want to make the life that I am giving from now until that end gets here to be a life lived fully and joyfully. A life that leaves behind a legacy worth passing on.
