Journal
It's taken me a bit to write this update because, frankly, I just wasn't ready to share. I needed time to process this news and because I'm still very much in the middle of the story. I still have more questions than I have answers.
I went into last week's medical appointments feeling better than I've felt in awhile. The last few weeks I've been able to travel, I've spent time with friends, and doing things I love--all of which has returned a lightness to my spirit and a bit of a spark back into my life. Also, my last two rounds of chemo have each been stretched by an extra week, which resulted in me feeling emotionally and physically stronger.
On Monday, I saw my cardiologist. High blood pressure is a known side effect of my chemo treatment so we've been trying for a while now to get my blood pressure under control. Thankfully, it seems we've finally found the right combination of medications and my doctor is pleased with the results. At the end of the appointment he sent me on my way with a "keep doing what you're doing and I'll see you in a year" message! This is fantastic news.
On Wednesday, I had an abdominal, pelvic and chest CT scan to check for any developing signs of cancer growth. Because I have an aggressive type of cancer, my clinical trial requires that I get these scans done every 9 weeks. I've been concerned about getting this scan because the last time I had oral and IV contrast, I spent that night in the bathroom, vomiting. Thankfully, this time the test went without incident and although I had some mild diarrhea that afternoon, I had a restful night and awoke the next morning feeling fine.
Thursday, I was scheduled for chemo. I started my day getting blood drawn for labs and having my port accessed. They routinely test a myriad of things every cycle, so I've learned what to expect. The nurse who accessed my port knows me and we chatted about how good I've been feeling and that I really don't have any concerns going into the day. I have no reason to think that anything has changed on my scans, my immunities should look good with the bonus week I had between treatments, I've been feeling good, and I expect to have everything just be routine today. I was feeling very optimistic.
I headed upstairs to meet with my oncology team and was called promptly back to an exam room. I was pleased with how smoothly my day was going so far! My vitals were taken, and I breathed a sigh of relief when my blood pressure met the limits for chemo, Yay! I answered the millions of questions they ask me each cycle. They want to know, have I experienced "this" since my last treatment? No. Have I experienced "that"? No. I kept answering and was so pleased that I basically had nothing of concern to report! What a welcome change from how things have been in the most recent cycles! I finished with the nurse and waited to talk to my oncologist.
While I waited for her to come into the room, my phone buzzed with a notification of a new test result. I opened my MD Anderson app and read through some of my blood work results from the draw that had just been completed. I scrolled through the various numbers, but as I read the results, my heart dropped.
I know, all too well, the numbers needed to qualify to get treatment, and I could see that I didn't meet them. I knew there'd be no chemo today.
Shit. Shit. Shit. Shit. Shit.
But WHY are my immunities so low?! I was incredulous. I had an extra week of recovery time since the last chemo infusion. I've been feeling fine. I haven't been exposed to any illness. Why are my immunities so challenged? They are literally the lowest they've EVER been! After 27 rounds of chemo, that's really saying something. Remember five weeks ago when they were so low that I couldn't get chemo? Well, now my numbers are barely half of THAT!!! Why??? And now what??? What does this mean????
I'll cut to the chase here and tell you the outcome of all of my questions and the conversations that followed.
There are two issues. First, my immunities are at an all time low and this doesn't make sense. We shouldn’t be seeing these drastically low numbers with the chemo drug I’m taking. They’re putting in a STAT referral to see a hematologist to try to figure out why my bone marrow is not functioning as it should be.
My oncologist said it’s likely that they’ll want to do a bone marrow biopsy. I crumbled at these words because I jumped straight to thinking that this must mean that she suspects my cancer has spread to my bones. Through the immediate tears that sprung into my eyes, I asked her this exact question. She quickly clarified that she doesn’t feel it’s metastasis to bones, and went on to explain that a bone marrow biopsy is the process by which they gather more information. Bloodwork alone may not be sufficient, so they will likely need to go to the source to get more answers.
The second issue, and it's a big one, is that my CT scan shows some questionable results. They’re seeing “mild”, and “slightly more thickening” of my bladder and peritoneal lining, that is “slightly more pronounced” than on a previous scan.
Let me interject here and say that change of ANY kind is usually not good news. Change often means cancer growth. Also, measurable changes typically result in being removed from the clinical trial. This means that my ability to continue in my existing treatment plan may be in jeopardy. My oncologist will be talking to the clinical trial team to see what effect this may have, however, that decision is moot until we can get my immunities improved.
It's a lot. I finished the appointment carrying a heavy bundle of emotions. Shock, confusion, anxiety, sadness, disappointment, anger, disbelief ... you name it, I was feeling it, and feeling it deeply.
I headed back to the lab to have my port de-accessed so I could go home. The nurse who had so recently drawn my labs saw my face and knew it was bad news. She was professional and compassionate, but I could tell that she had been hoping for better news, right alongside me.
So what now?
My team worked hard on Thursday and Friday to jump through ALL the hoops, and have been able to secure an appointment for today (Monday) with a hematologist. This is just the first step in whatever the next stage of developing a (new?) treatment plan for me may look like.
I expect it'll be awhile before we really know what is to come next, and living in that uncertainty is really hard. In fact, I think this is among the worst parts of having cancer. It's one thing to know you have the disease, but once you're implementing your treatment plan and doing something about the cancer, it becomes somewhat less anxiety producing. Knowing you have cancer and that it may be growing while you're doing "nothing", is awful. You feel like a ticking time bomb. Right now I'm in the "hurry up and wait" stage, while we collect more data about how to move forward.
To my sweet army of prayer warriors, please pray over the details of whatever is to come. Pray for wisdom and discernment for my care team. Pray that the current break from treatment allows my body to recover and recuperate, without any negative effect of cancer growth. Pray for protection from illness and infection. Pray for peace and comfort in the unknown. Pray that any potential hurdles are overcome.
Thank you!
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