Not to worry. I am staying alive.
I have started to write numerous blog entries over the past few months but never finished them. A small part of my aversion to writing was due to the mere trouble of creating stupid pinable images for the blog. I really hate that part of a blog. I was mainly just burned out on cancer talk and I needed some time to regroup. The past three months have been a huge blessing. I have been off treatment (more on that later), going to a local oncologist, and able to (mostly) lead a normal life. It was a nice break.
That is fixin' to change, though, y'all.
So first thing is first: I am not yet having a recurrence that I know of. I would certainly appreciate prayers that I would NEVER have a recurrence, but I'm relatively healthy at the moment.
What have I been doing and why did I switch my oncology team AGAIN?
In short, it was just hard to get to Chicago and it is expensive. We are scraping the bottom of the barrel on finances and I needed to just get a break. However, many of you will be happy to know I am now back with the Block Center because I really can't stay gone for long.
Here's the long story:
I had been debating switching from the Block Center for awhile and I spoke with them multiple times about being my consulting oncology team while I went locally. The local oncologist was a sweet young man who was a bit less aggressive with his treatment than Dr. N. For example, the Block Center will parp inhibitor treatment when your ANC is 1000 or greater. The local oncologist was uncomfortable with my bone marrow being so sluggish and receiving Lynparza, so he has held the Lynparza for over 2 months.
That was scary and amazing at the same time. While I am terrified of having a recurrence, I also am terrified of permenantly damaging my bone marrow. Either way, though, my body clearly needed a bit of a break. So, I went off the Lynparza with a CA125 in the 6s. I believe it was 6.4.
At my first or second appointment with the local oncologist, I noticed a pain in my mid to lower back. I told him about it and he said we would wait and watch it because I had just completed scans and they were great. Unfortunately, the pain progressed to the point that I went to the ER on December 20th.
At the ER, it was supposed that I had a kidney stone. The doctor said I could choose to do a CT, but he persuaded me not to based on the radiation I already recieve during scans. I had mentioned that I would regret not getting one if I ended up having a recurrence, but he said that a CT for kidney stones would not show an ovarian cancer recurrence. I asked if there was another option. He hesitated but led me to believe there wasn't. He also declined to run a CA125, which was disappointing.
So, I went home with no real answers. My pain wasn't severe, so I doubted it was a kidney stone, but I had nothing to indicate what it was.
I was frustrated and though I didn't blame the doctor, I didn't think he was particularly interested in much else than his pizza and getting off of his long shift.
The next day, I was supposed to follow up with my oncologist. I called and left a message with the nurse, but they must have been slammed because closing time came and went and no one called.
A customer survey guy from the ER called in the midst of this stressful time and made me cry. I don't know what kind of bug crawled up his rear end, but I really didn't need it that day. (Side note, Bronson called the hospital back to chew the guy out afterwards and then I cried harder because it meant so much to me that someone else would just stand up for me and take care of the nonsense. So sorry, Rude Clint, wherever you are, but now you get to deal with my angry husband. That'll teach you not to make women cry.) There was a lot of drama there, but that guy isn't getting any more of my precious moments of life, so that's all I'll say about that.
As I sobbed and hugged my husband telling him how much I missed my old nurse, Julie, and how I didn't like that it was always a fight to get decent care, Dr. Block of all people called.
By an unexpected turn of events, I had an appointment that I had set and forgotten about. He calmed me down and reminded me that even if I was having a recurrence, there were still plenty of treatment options available. He told me I should file a complaint with the hospital over Rude Clint. He talked me down from the total panic about whether I was dealing with a kidney stone.
I was convinced by his typical calming nature to switch back to their primary care and he ordered a CA125 and CT.
This guy has taken my calls on holiday weekends while I can rarely get in touch with other oncologists. I just can't even express how much I love the Block Center.
My nurse at the local oncologist did end up calling after hours, which was sweet, but by that point, the decision was made.
I ended up getting my CA125 back the next day from the lab where Dr. Block ordered it: 7.2.
Not great, considering it usually runs in the 6s, but not awful, either.
(Bronson prayed for it to be below 8. 😐 He didn't know a 7 would make me nervous.)
Anyway, on Christmas Eve, I passed a kidney stone.
It didn't really hurt much, which surprised me, but there isn't any mistaking a tiny pebble shooting out of your urethra.
I am a little embarrassed to talk about my urethra online. I didn't even think I got embarrassed. But anyway, I'm pretty certain it was a kidney stone.
However, it must have been the world's smallest stone or more polished than a Liberty Head nickel on Hawaii Five-O, because it wasn't excruciating.
I expected more of a climax.
Instead, I suddenly awoke from a recliner nap, stated, "It's definitely a kidney stone. I have to pee," and then shot that little sucker out faster than you could say, "renal calculi."
Pretty uneventful.
I am praying that the increased CA125 was simply due to inflammation from the kidney stone.
Unfortunately, it's also highly likely that it is due to being off the Lynparza for over 2 months, too. Dr. N said she is not worried about the increase, but another oncology nurse through my insurance wasn't super thrilled, which made me be super-DUPER-not-thrilled.
I had told myself I was done with Lynparza because I simply couldn't handle the worry about what it would do to my bone marrow. It is sluggish. However, after talking with the doctors and my nurses, I think I need to begin it again.
I hate that. I loved these last 3 months of energy and feeling like my old self again.
But, you gotta do what you gotta do.
This entire situation has been rather lonely, to be honest. My life revolves around such a small sphere now and some days are just downers. Today is a bit of a downer. There's always a bit of sadness after Christmas- even my stoic husband agrees with that. Being back in Chicago and going back on the Lynparza is a bit depressing, too- partially because it's Chicago. I wasn'tbred for cold weather. I'm like a naked cat. I need sweaters if it's below 60.
It also reminds me that this whole cancer thing was real and not just a fluke event that I have gotten past, though.
Depressing!
I'm combating this by crafting (Valentine's decor, here we come!), researching stuff for a business, snuggling my kids and puppies (whichever let's me snuggle them at the moment), and dreaming about a cancer-free future.
I'll have my CT on the 13th. Hopefully it will be clear and hopefully my CA125 will plummet again with the Lynparza.
If you think of me, please continue to pray. I still need it. If you come across something funny, send it to me. And if you have cancer and need a friend, reach out.
As long as I'm alive, I'll be here for cancer patients to vent to.
❤ Stay healthy.
PS- I'm not making a pinable image. I'm a rebel. It's like 1998 up in here. I'm sure I have some comic sans or papyrus in my font list.
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