A Pleasant Surprise

Note To Readers:

I purposely held off on writing this until now, because, well, yesterday was April Fool's Day, and some of what I'm about to share might seem unbelievable. I know that I had a few "jaw drop" moments.

Oncology Visit Report (4-1-19)

This was scheduled with the plan that the brain MRI and full body CT would have been done, and we could discuss results. As I mentioned in my last journal entry (https://alostwifesjourney.blogspot.com/2019/03/last-week-you-ask.html) a week ago, it wasn't happening anytime soon, and, in spite of my daily calls, it hasn't gotten any better.

I've been feeling awfully burdened (https://alostwifesjourney.blogspot.com/2019/03/some-nights-are-like-this.html) by all this. I mean, I'm human, and nothing at all like the "Superwoman" I often portray in public. I frequently find myself grasping for invisible lifelines that just aren't coming, and it's exhausting. I realize I'm frequently exhausted. The insomnia coupled by the constant worry has had an effect on me.  This appointment turned out to be an answer to my prayers (and probably the prayers of others) We were handed a "lifeline" and the both of us are taking it for all it's worth.

The first thing on our personal agenda was getting the Social Security disability papers filled out and signed. We were pleasantly surprised to find out that my Husband is eligible for disabled parking as well. His energy level is so low, and even getting out of bed is hard for him. When the Oncologist told us and offered to do the paperwork, it put a smile of relief on my Husband's face. Really, he rarely complains, but it's been a rapid downhill slide over the past few months.  I see it, and it scares me. 

No, the paperwork wasn't the lifeline, neither was the parking permit.

The next thing on our agenda was to have the Oncologist look at a rather large abcess that mysteriously appeared last week.  He diagnosed it as MRSA, and prescribed a very strong antibiotic.  Unfortunately, combined with my Husband's blood pressure medication, it has a side effect of elevated potassium levels, so he will have to restrict his intake of potassium.  Unfortunately, I learned in recent months what effects elevated potassium has on a person, because it caused a dear friend to wind up in the ICU not that long ago. I will have to be hypervigilant for the next two weeks.

After that, we discussed the blood test results from 2 weeks ago (pre-treatment). This is where it all gets interesting: Apparently, my husband's Vitamin D levels are extremely low.  His result was 11. Normal is at least 30. It adds to the normal fatigue of cancer, adds to depression, and contributes to his pain levels.  It was definitely a lightbulb moment. It was decided that he would take a high dose Vitamin D supplement once a week. Since it's a special order, it will take a day or so for the pharmacy to get it.

Next was Testosterone levels.  My Husband is 62, and most men his age have a level of 200. In other words, decreased testosterone levels are common, and since prostate cancer is related to increased testosterone levels, he was placed on anti-androgen (anti-testosterone) medication.  His level came out as 330. Another AHA! moment. Most men his age would be envious. Except, that's why his cancer is so aggressive.

Finally, (and this was the biggest "jaw drop" moment, and much-needed lifeline) we were given the PSA levels. In January, they were 120. As mentioned before, normal is 4, and since my husband had received NO TREATMENT until his last appointment, there was a concern that the levels would be drastically higher, and the higher the levels, the less "time" there is for him to get life-saving treatments. "Time" is our only hope right now. The lack of "time" is my obsession, my worry, the thing that keeps me up at night, the reason for my tears and frequent feelings of hopelessness. He saved the best for last.  My Husband's PSA level was 98!  Yes!!! 98! 

My question and my Husband's question (and probably yours too) was How???!!! The human body is amazing, and PSA levels will fluctuate some. That's what happened in this case, and it buys us a little more time. I'll take it!

Future Plans

We were told to not worry about changing the MRI and CT scan to a sooner date, the next Oncology appointment is Tax Day (4-15) and the results will be in by then. We understand that just because the PSA levels have lowered it doesn't guarantee that there hasn't been a bigger spread of the cancer, so we're still hoping for the best, but we're also working on a bucket list.

The Casodex (anti-androgen medication) will continue, but the next visit will mark the beginning of the Lupron injections, which will eventually replace the Casodex completely.

We still have so much to do, but the fact that the Oncologist is being transparent with us, and explains everything, it makes this much easier for us. 

Maybe we can breathe, and for the first time in a while, the waiting isn't quite as scary.

https://www.youtube.com/watch?v=B3blT1IRafU

Some Nights Are Like This

It's well after 3AM on a Sunday, and I can't sleep. I feel like I have the weight of the world on my shoulders. I'm feeling more worried than usual, and I'm not sure why. Uneasiness will often creep in at the strangest times.  I get it. How could I not be worried?  My Husband has cancer, and even though I work hard to not let that fact color my life and thoughts, sometimes it does. 

Is he dying? Well, we're all dying. Some faster than others. Death is an unpredictable thing, but we're all going to do it (die) sooner or later.  I remember being about 12 and waking up in the middle of the night crying, and my mother came in my room when she heard me sobbing.  "I don't want to die!" I said. She reassured me that I had a long life ahead of me and to not worry about it. I've been close to death a few times since then, but medical science is amazing.  I don't worry much about my death these days, but I still do worry about death, especially as I watch my friends in their 50's and 60's die of all sorts of things.

So, yeah, I worry, and sometimes the worry keeps me up at night, as if my staying awake at night is going to help it.  (Spoiler Alert: It's not!) He saw me get out of bed, and get dressed to come into the kitchen where the computer is.  He asked my why, and I told him I couldn't sleep. What I didn't say is how worried I am. Some would say needlessly, but I think I have just cause. Hey! It's my life, and my nightmare, and I reserve the right to feel how I do. It doesn't have to make sense to anyone else. 

Just over 2 weeks ago, our Best Man died. His wife was my Maid of Honor.  They got married a little over 2 years ago. He was 62, same age as my husband. She's 5 years younger than me (52) and yes, he had a chronic condition, but he wasn't particularly ill at that moment. She's lost, easily as lost as I would be if my Husband died, maybe moreso. I don't know how she feels. I've even said as much to her, and I can only imagine her grief and despair. I have  what I call "anticipatory grief and despair." Mourning a loss before it comes. 

I had it when my oldest sister was dying. She was very sick for a few years, and I was her caregiver. I would often cry alone at night, knowing that one day (maybe today?) would be her last, and even with all my mental preparation, the day she died, it caught me by surprise. I told her friend "I thought she had a few more days" when explaining why she didn't need to come for her planned visit in a few days.

I don't know if writing this helps me or not, but it clears my head a little. Speaking of writing, I carried on 4 separate text conversations on Saturday afternoon.  It might not seen unusual to anyone reading this, until you realize just how much I hate texting. I detest it. Yet, I did it, because it was practical at the moment. None of them were particularly bright and pleasant, mostly commiserating about life and death, and bills, but I wrote a few gems, and I would be remiss if I didn't share what I wrote.

"You are living my worst nightmare, and knowing that is so very hard. I just want to give you what I think I would want. I have deep feels for you."

"Some people won't know what to say or how to act around you."

"You're just too damn young to have to go through all this."

"It's not like a divorce, where you know he's around someplace and you're trying things on your own, it's more like he skipped town and left you with nothing."

"I'm not trying to make light of this at all."

"I told her she is living my worst nightmare."

"I hope I can be there for you."

"Not much day to day stuff. Just the overall insanity."

"Some people are afraid it's contagious, so they just avoid discussing things with me. My friend gets the same thing."

"I don't mean literally contagious, I mean that they just don't know how to act, so they don't do much of anything. I don't blame them. It's scary. Besides, I know you're there if I really need you."

"You go through enough as it is, and I will admit that I've been pushing people away too. I'm not sad all the time like I was, but I still don't want people to see me like this."

"Cancer is just scary, especially when it can't be treated by surgery, and it's spread to parts unknown."

"How is he coming along?"

"Oh gawd, the hospital bills! Let's not even get started talking about that.. (squinting face) " 

"Pride? What's pride? I gave up on that one a long time ago. When you get old like me, you kind of give up on that one. It's easier to just relax."

Okay, now I feel better. Maybe I'll try to sleep.