Starting new chemo on Tuesday

Well, last week was a little draining. A trip to the ER on Sunday, a day surgery on Thursday, and in between, the election.

But wait, there’s more! I start a new chemo on Tuesday (FOLFOX, for those familiar). Not my favorite chemo cocktail but here’s hoping that it works. I’ve had four weeks off chemo, which usually would be refreshing but this time was filled with hospital visits, so didn’t feel so much like a holiday. We begin again!

Thank you so much for your prayers and positive thoughts last week. I know it pulled me through. And thank you for your continued support.

Love and blessings,
Marie

This week’s adventure

Today, the day after the presidential election, the mood here in Boston and Cambridge feels a bit somber and quiet. The nice thing is that we are all shoring each other up. That feels good.

In the meantime…

I was hoping that this week, I wouldn’t need to be at Dana Farber or the Brigham, but that was not to be.

On Sunday, I landed in the Emergency Department. When I realized that something in my body was awry, I called my husband, who was in the middle of a Cub Scout adventure. He figured that something must be horribly wrong, as I never ask to go to the ED. Our son wasn’t thrilled to leave Scouts, or to be in the ED with me. Watching the nurses work on me was pretty scary. After a few minutes, he yelled out that he had a tick (he did not) so that someone would take him out of there. Thankfully, they fixed my problem and I headed home the same night.

As a follow-up to that visit, I need to have one of the stents replaced ASAP. Thursday (tomorrow) is the soonest they can do it, and it is with a doctor I haven’t yet met, though he comes recommended by the urologist I trust (who is too booked to do it himself).

Until that procedure, I am supposed to take antibiotics to ward off infection. They prescribed the gentlest one that they felt would work, but my nausea was out of control. After not eating for a few days, I had to stop them and rely on hope that there is no infection.

So I would deeply appreciate prayers and positive vibes for no infection and a smooth procedure. Thank you so very much!

I hope you are doing well today.

Love,
Marie

 

Three appointments this week

Thank you for your prayers and positive thoughts, and the many, many ways you are supporting me and my family. I cannot describe the difference it makes in our lives.

No chemo this week – woo hoo! – but instead, I have three medical appointments and can use prayerful support for each of them.

Wednesday: CT scan
Trying to stay calm about this one, hoping the current chemo is working…

Thursday: Appointment with Wound and Ostomy Nurse
Some foreign being seems to be growing out of my belly button. That in itself freaks me out, though every time I show a doctor, they simply ponder it and say, “Hmmm.”  I’ve been trying to keep my worries at bay, not to mention that it grosses me out. On a practical level, however, it is growing WAY TOO CLOSE to my colostomy bag. I’ve already cut back the colostomy appliance as far as it can go. And my makeshift bandage isn’t working as well as it used to. I need help, and I’m hoping she has some ideas for how to manage this or that she can access a doctor who does.

Friday: Get nephrostomy tube removed
I’m not exactly sure what this involves. No one can tell me if I will be sedated (never a fun ride for me) but they did say that the doctor will inject contrast dye to make sure that my stent is working, and, if all looks good, they will remove the stitches and tube. Fingers crossed on this one – I would LOVE to get rid of this tube!

And then – the weekend. Whew. That is plenty of appointments for one week.

Thank you again for all your support!

Love and blessings,
Marie

Back to bag, and then chemo

Thank you for all your prayers and positive thoughts! The procedure on Friday went well. They were able to place the big girl double-J stent! They left one skinny tube hanging out of my back, just in case.

Good thing, because on Sunday morning, I again woke up with pain in my left kidney and a wet bandage. Back to the bag we go. Ugh. But the on-call doc reassured me that this isn’t unusual and I am likely still on my path to having just the stent, no tube.

So, I will have the bag until Wednesday and we will then try again without the bag.

In the meantime, I have chemo on Tuesday, so prayers and positive thoughts for an effective and easy session are much appreciated!

Thank you so very much.

Love and blessings,
Marie

Weekend health update

Last weekend, we suddenly had the opportunity to take a trip I’ve dreamed about for the past 10 years. We were scheduled to leave on Saturday morning.

On Friday night before we were to leave, I couldn’t sleep. I had so much pressure in my back that I felt like gas could come out of my left kidney.

Eventually I put my hand on my back and found that my shirt was soaked. The bandage around the tubes was soaked. That can’t be good. It was 1:30 a.m. and I reluctantly woke my husband.

We cleaned the area and replaced the bandage. My husband explained that the kidney was unable to empty via the stent. The contents had to go somewhere, so they filled the tubes in my back. Once the tubes filled, the kidney kept emptying but overflowing out of the holes in my back.

Since this was coming out of the tubes, we hooked the tubes to the bag. Ugh. I was really looking forward to getting my big girl stent and getting rid of these tubes. Now I not only had the tubes, but a longer tube attached to them and a bag.

I didn’t want to wear yet another bag. And with about six hours to go until we left for our trip, I wasn’t comfortable traveling. I didn’t know how often I needed to empty this bag, whether there would be upcoming complications, or even how to dress to hide the contraption.

We decided that my husband and one of the boys would do the trip, and I would stay home with the other. As they travelled west, I sat around in my bathrobe all day feeling sorry for myself.

On Sunday, I pulled myself together and tried to get dressed.

At the same time, another situation required my attention. Although the bag for my left kidney was filling regularly, my right kidney still emptied via my bladder. However, I hadn’t emptied my bladder all Saturday and most of the day on Sunday. I tried, but nothing.

After calling three different doctors, I decided to go to the ER.

Once there, they catheterized me and at some point during this process, the urologist suggested that they might send me home WITH THE CATHETER! Suddenly, the nephrostomy bag didn’t seem a such a big deal. Perspective, huh?

Thankfully, they removed the catheter before I left, and they alerted the various doctors that I needed to see later that week.

I did a phone check-in with my primary care doctor. (Love her.)

I saw the urologist on Tuesday – no real problems they could find.

And on Friday, tomorrow, I have a procedure at 6:30 a.m. to see what is going on with the stent. What they find determines our next steps.

So, more conscious sedation. But hopefully more answers as well.

I would LOVE any prayers that this is all simple and straightforward and that I can get my big-girl J-J stent! Thank you.

I hope that your weekend was fun and exciting in positive ways!

Love and blessings,
Marie

Someone pointed out that I make this all sound so easy, so just to add some dimension:

• I did have to find someone to take care of our son before I left for the ER.
• This time, I texted around to find a ride to the ER rather than take an Uber.
• Once at the ER, two friends came to visit. But that environment is a harsh and draining place and definitely took a toll on one of them who stayed for the long haul. I get it.
• On Tuesday, my husband cancelled all his plans until we heard what time the follow-up doctor could squeeze me into their schedule, so that he could go with me.

My new goal is to have one full week without a single visit to the hospital!