If you are here looking for the bottom line, scroll to the end of this post.
He will have no fear of bad news; his heart is steadfast, trusting in the Lord.
On Tuesday, I went in for chemo. A friend generously volunteered to accompany me for the whole shebang, and because I had a CT scan in the wee hours of Monday morning, my husband joined for the appointment with the oncologist so that they could view and discuss the scan. He’s amazing.
Backing up to the start of the day…
My friend and I arrived at Dana Farber. My port was accessed (and I didn’t vomit – yay!). I got weighed (holding steady above 100 pounds – yay!) and blood pressure taken (normal), plus temperature and oxygen. All normal. (And no vomiting.)
And then we saw my oncologist. He was a bit more serious than usual, but I just thought he was busy.
Turns out, there is tumor, not just pressing on my bladder, but pressing on my ureters. This puts me in danger of kidney problems. I didn’t know how my body is designed, so will explain here in case it helps you, too. Kidneys are connected to ureters, which empty into the bladder. The bladder empties via the urethra, and that’s about it. Simple design.
I think of the ureters as tubes, and the stents as straws to help hold them open so the kidneys can drain properly. No idea if this is accurate, but the image works for me.
Anyway, kidney news not ideal, but we’ve had bad news before and I figure, if there is a fix, we can deal with it. Mostly I hated that the ED resident from the night before was right, though I was grateful for his persistence.
But then, the doctor continued.
“If they can’t put in the stents by going through the urethra, then they need to do it by going through the kidney. This is a surgical procedure and means that you will have a bag for about eight weeks. And if they can’t do it at all, then you will have a permanent bag.”
WHAT???? Here is where my insides started spinning. Many years ago, I got a permanent colostomy bag. I feel like I dealt with that pretty well. In fact, I would take the bag over tumors any day.
But TWO bags??? This was too much. And I have lost so many body parts already. At what point do you lose so many that you are no longer a person?
I tried to stay focused on the moment, but when I returned my psyche to the actual moment, here is what I heard:
“And your tumors have grown. It isn’t clear, but there may be a new one…It’s hard to tell fully by this scan. And there is a tumor in the bladder. Maybe it is blood clot.”
My husband and doctor conferred on tumor vs blood clot. I was trying to push back the thought of another bag and deal with the fact that, even though I felt great, my tumors look bigger.
Ugh ugh ugh. If the tumors are bigger, then this chemo isn’t working. And if this chemo isn’t working, I need to go to FOLFOX, which I’ve done before and HATE from every angle you can hate a chemotherapy.
I found my voice and asked, “Can you check my CEA?” My CEA is a tumor marker that has, for years, been a reliable marker of growth. If it is bigger, then my tumors are bigger. If it is smaller, then my tumors are smaller.
He looked it up. “Before changing chemos, it was 800 something. Two weeks ago, it was 400 something.” (He gave me the exact numbers. I just don’t remember them.)
Well, that was some good news that I could hang onto. But the scan. That freaking scan kept entering my mind. And the bag.
Well, no chemo anyway until we get the kidney situation under control. Which made me nervous too. No chemo means that nothing is fighting these tumors on my behalf.
Next up: See the urologist.
The end of August is not a great time to need a specialist. Everyone is on vacation. I know this because I have had more than one surgery and more than one emergency in August. Right now, the preferred urologists were on vacation, except for one who wasn’t leaving until Saturday!
He and my oncologist had communicated at 11:30 the night before. He was not in clinic that day but agreed to perform a test to see if they could possibly do the stents “the easier way” through the urethra.
Before I see the urologist, I need to take two Cipro pills, to prevent any infection that the test might cause. No problem you may think. Except that the pills are administered by my nurse, and the sight of her makes me vomit. If I hold back, there is a risk that I will vomit later. But I can’t can’t CAN’T vomit up those pills and get this procedure. If I vomit and get it out of the way, I will not be able to swallow the pills.
I avoid looking at my nurse, swallow the pills, and we run out of the office.
We sat for awhile in this spiritual rock garden place where my friend distracted me with witty conversation and where the air felt cleaner and had no hospital smells.
About an hour later, off we went to the urologists office. The check-in woman put me at ease. She gave me some forms to fill out. I couldn’t write. I was shaking. Okay, maybe I wasn’t so at ease.
My husband filled out the forms and we met with the urologist, who again prepared me for the possibility of a bag. I was not encouraged.
BUT, he did the procedure and saw that he could at least access what he needed to access to insert the stents “the easier way.” No guarantees, but it was a good first step, so I hung my hopes on that.
Everyone agrees that this needs to be done as soon as possible, and I’m on board with that. He was able to schedule the procedure for Friday, before he left for vacation on Saturday.
This day had done me in. We went out for dinner to a really nice restaurant and I ordered a glass of wine. I haven’t had a drink in over 10 years, and I suspect that someone with a kidney issue shouldn’t reach for a drink. So this was big for me. I got tipsy pretty quickly, and then mildly drunk. I was singing and dancing and the kids thought it was hilarious. And while I don’t like to feel out of control, I felt out of control all day. This kind of “out of control” felt much better.
The Bottom Line:
Now that it is a new day, I’m trying to focus on the good:
- I was able to see a top urologist, quickly, and he will put the stents in on Friday morning. I’ve had enough surgeries and emergencies at the end of August to know that this is no small thing – most top doctors are on vacation. So for his ability to help me, I am grateful.
- There is a tumor in my bladder. It got there by growing through the bladder wall, so they can’t remove it without leaving a hole in the wall of my bladder (which would cause more problems). That means that, for as long as that thing is there, bleeding will be part of my life.
- On the CT scan, it looks like my tumors have grown. BUT…My CEA (tumor marker) is less than half than what it was before this chemo. I don’t want to change chemo – my energy is good on this one. They agreed to continue with the current chemo for the time being and we will test again.
- I am able to take one step at a time.
Wow. What a week. So whatever is in your day, feel free to say, “At least I’m not going through THAT.” And I do hope that your problems are totally manageable. And will pass.
Thank you so much for your prayers and support. While I was questioning whether God was off busy with someone else that day, I appreciate knowing that you are carrying me through all this and being His representatives on earth. Thank you.
Love and blessings,
Love to you Marie. You are always in my thoughts. Thank you for sharing what you are experiencing. I am so glad the doctors are working on your behalf.
Oh my- you have such huge courage and faith. I hope you are feeling better.
You are one amazing-sacred-rock-star of a human being!
Thank you for sharing your story– as always, your perspective and honesty are such powerful medicine for us all.
I will be holding a vision of best possible outcomes for you on Friday! Ease and joy too!
My heart is with you,
You are so amazing Marie! Your courage and grace are beyond everything. Please know that you are always in my thoughts and prayers.
Much love, Nayla
Sent from my iPad
Marie, This is so difficult and you are processing with incredible strength. Hang in there. Onward as the Brits say and courage as the French say. You’re amazing and this is hard. Sending prayers and love. Heidi xo
I mean you are just my god! I am in such awe if your prowess. So glad you to,d the doctors no! I think the markers are the best indicator! Good numbers and hold onto them! Drink more wine too! Sending love and see you soon!
God bless you, your family, and those in charge of your care.
Oy vey! Enough already with the complications. I’m hanging onto the good news about the 300 scan number. Hope you are too. Much love.
Marie, stay strong, stay hopeful – there is good evidence for more good news and a glass of wine here and there. My best to you.
Thinking of you, and sending you a virtual hug.
I’m sending you all the love and positive energy within my reach! You are such a warrior. ❤ ❤ ❤
Hello Marie, thank you for sharing all of this. YOU are one TOUGH cookie!! Your boys may not recognize your courage, strength and great sense of humor but they will as they go through their own challenges, quite the imprint you are making. Meyerhardt must really love you. I will say I love how Dana Farber works to find a way to solve or work around challenges. I remember well how Julie always asked for the CEA number, so important to have a sense of the trend, especially when it’s encouraging.
Another school year is upon us.
I love you Marie, Joe