Friday, October 23, 2020
It's kind of odd how being a cancer survivor just kind of became part of my distant history. Nothing going on, nothing to write about, right? So, I didn't post anything.
I went to ALL my check-ups. I followed up on anything and everything that I thought might be a concern--even straying over the line into the "overly cautious" camp. But I wanted to make sure I didn't miss anything!
In July, I went in for my usual check-up. All my labs looked good. I was feeling very tired, but I have felt very tired since I finished chemo. I never did bounce back to "normal," so I just thought everything was fine.
I had a little cough all summer, but figured it was probably allergies. Nevertheless, I went to the Dr. in August and had a chest X-Ray. Everything looked good.
In September, right before Labor Day, I started having intense pains in my right shoulder and the right side of my neck. I had had a few stabs of pain in my right lung area upon occasion during the summer (right behind my right breast, deep inside) but I didn't think much of it. I also had an occasional "pinch" in my back, when I was laying in bed, if I was in a certain position. Again, I didn't think anything of it. These things were infrequent, and I have gotten used to weird pains here and there. That's part of my new body. But the shoulder pain was pretty intense, and that got my attention. Kind of. I just assumed I had injured myself in some way.
On the afternoon of Labor Day, I started getting a sore throat. The next day (Tuesday) I just felt wiped out--really yucky, and I took a couple of short power naps whenever I could squeeze them in. The next day (Wednesday) I felt a little better, but not good. The next day (Thursday) I felt a little worse again, and had a little nausea. By the afternoon, I started feeling really yucky. I was wearing a jacket, under a heavy blanket, laying on the couch in direct sunlight and freezing. I decided I better have a Covid test just in case. I called to make an appointment for one the next day and then barricaded myself in my bedroom, where I stayed until Friday morning. I went down for the rapid Covid test; when results came back, they were negative. So, I thought I had a little virus and I just needed to wait it out. By Friday afternoon, the shoulder pain and neck pain got so intense that it moved up into my neck and all the way down my side. Taking a breath became painful, so I finally went to the Dr.
Her initial thought was that it was pleurisy. This seemed like a logical diagnosis; I had had it before, and I had some lung damage from radiation. She ordered a shot of Toradol (bless that shot!) and sent me to have X-Rays and labs just to make sure it wasn't anything more serious. The Toradol worked wonders for the pain, and when I left the hospital after all the tests, I was feeling good. I got about halfway home, and received a phone call from the Dr. Some of the labs had come back elevated, and I needed to go back to the ER; it could be a possible blood clot. So, I turned around and went back. Spent the evening of 9/11 in the ER, getting a complete work-up. Long story shorter, CT scans of my abdomen revealed the problem--my liver was mad at me. Neither the radiologist or the ER Dr. could tell for sure why, but neither possibility was good news. It was either cirrhosis of the liver, or metastatic cancer. They couldn't tell for sure because the liver was "fully involved" with whatever it was. Well, the cirrhosis idea really threw me. Upon my honor, I have NEVER had even ONE alcoholic beverage in my whole life, and I have NEVER used any kind of drug recreationally (prescription or otherwise.) Then I learned that Tamoxifen can cause cirrhosis and that there is a kind of cirrhosis called "Non-alcoholic cirrhosis" or "fatty liver disease." Well, OK. Not good news, but it seemed like a logical possibility.
A follow-up biopsy revealed the awful truth; it was metastatic breast cancer, and my liver was fully involved. I cannot describe the shock I felt. Honestly, it was like getting hit by a train that you never heard or saw coming. And then you are plastered all over the tracks trying to pick yourself up and figure out how to move on. There are no words that adequately describe that feeling!
Looking back, there are a few little symptoms I missed. But when I say "little" I mean "little." They were so subtle! The good news is that something made my liver really mad and it flared up so we caught it earlier than we otherwise would have. That being said, it isn't early. My whole liver is involved. And as one of my oncology providers stated "it is treatable but not curable."
I have had about 6 weeks to try to get my head around it all. I have to think about the future differently now. My baby (who was 19 months when I was diagnosed the first time) just turned 8. My bucket list will never get done. Most days that doesn't matter a whit to me now. Most of the time I don't care that I won't get to do the things I had always hoped I could do in the proper "season." It's hard to get my head around that. However, I can give those things up. But my kids!!! I don't want my kids to lose their mom so young. I want to raise them to adulthood. It seems a little dumb to say I don't want them to lose their mom, because as one relative said "no matter how old you are, you always need your mom!" So, it really seems silly to say that I want them to be older before they have to face that. They will never really be ready. But I don't want them to have to deal with the loss of a parent in their teenage years. I have seen the effects of that in the lives of others, and I don't want that for my kids. And yet, there isn't really all that much I can do.
I am learning a lot (again) about trusting God. I am learning a lot about what faith really is. Others have given me advice that has helped me to sort it out a little bit in my head. I kneel down and tell Heavenly Father what I want, and how important it is to me. And I ask Him to allow me to live to raise my children if it's His will. And then I leave it in His hands. And I go to the Dr. and I get treatment that I am hopeful will extend my time as long as possible. I hope it will be at least long enough to prepare my husband and my children for the time I won't be here. I didn't realize how much I really do until I contemplate trying to help them learn how to do all the things I always do, and have always done since my husband and I were both very young (naive) adults. It still feels very surreal, like I am living someone else's reality.
Some days myself and the other members of my family accept it as it is, and other days we are just really sad. One thing we did right is that we talked about grief, and what it is. I told my kids they will probably have some strong feelings that might even surprise THEM, and that's it is ok. I posted charts about grieving on the fridge. What a strange thing this is . . . to try to help your children through their grief before you die, all the while trying to process your own grief. Weird.
One of the things that bothers me the most (aside from the weird things that some people say) is when I see people who are older and seem healthy going about their lives. I wonder "do they know how lucky they are?" Probably not. I didn't ever think about how lucky I was when I wasn't in the middle of a fight for my life, either. I wish I hadn't been so blissfully unaware. I shouldn't have been so unaware! But life got busy and gratitude for health moved to the back burner. I regret that.
But, in all of it, there are some blessings that I need to acknowledge. 1. That my liver got really mad and got my attention. Since then, it has simmered down and most days, I feel almost normal. 2. Most days, I feel almost normal. 3. My cancer changed, which is rare, and the way it changed opens up some more treatment options. 4. I have great friends and family. My family members have all given what they could, especially my parents, to help my family in any way they could during this. It's going to be a long haul. I hope I don't burden them too much. SO MANY friends have given me great kindnesses. All are appreciated, but because it's part of a story, I will just mention three here . . . my sister arranged to have a photographer do family pictures for us. I am so grateful; right then I was dealing with insurance and appointments, etc, and was way too overwhelmed to arrange family pictures, too. A friend gave me a free haircut and style so I could look good for our family pictures (and even came to my home to do it.) The photographer wouldn't accept money for her sitting fee, even though she spent literally hours taking pictures of our family. 5. I hoped I would be able to keep enough hair to look relatively normal until after we had family pictures taken. But I knew it was going to be close. Well, my hair hung on just long enough for the pictures! We had pictures on Saturday (October 17) and it started coming out in big clumps on Tuesday (October 20) so we just shaved it. But I still had hair in the pictures! With no hair, I am feeling ugly right now, and I am so grateful I didn't have to have pictures taken feeling this way. 6. I had an MRI on my brain to see if any cancer had gone there, and it has not! Another blessing!
I would not have chosen to have my cancer come back. I am still struggling to accept the reality of it all. But there are a few things I know: Heavenly Father is aware of me and my family. This was a surprise to me, but not to Him. I also know--really know, in a way I can't explain--that He has a plan in place for my family, and this is part of that plan. I am 100% certain of that. There are lessons to be learned here, and the only way we can learn them is to be forced to stretch--to have our faith tried in ways and in levels that it never has been before. I am trying my best to rise to the challenge before us, and to help my children to do the same. Somehow, I know this will all turn out ok, even if I can't see the path today. I just have to keep hanging onto that.
