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

 

Onto the next big thing…

Consider it pure joy, my brothers, whenever you face trials of many kinds.
James 1:2

This timely sentence popped up on my Facebook feed this morning. I so appreciate your support, especially through this most recent stretch of medical appointments, so wanted to share the news from last week.

On Tuesday, we saw my oncologist to get the results of my CT scan. Basically, all of the tumors have grown, so this chemo apparently isn’t working. Bummer for that, and also because my quality of life was so much better on this chemo than on anything else I’ve done!

I need to add that, before this most recent chemo (Erbitux), I was doing FOLFIRI and I recognize that I was super lucky with that. For most people, FOLFIRI tends to work for months, but I, somehow, got SEVEN YEARS out of it. I remain grateful for that. I guess I expected the same for this new one.

Thankfully, I have a few other chemo options, and we are looking into immunotherapy options as well.

So no chemo this week. The anxiety is enough – ha ha. We will use the time to make a decision and then move forward with the chosen chemo after that.

The other good news is that I was able to attend our son’s fourth grade school play. Before the play started, I talked with a mom who was sitting nearby. Making conversation, I asked if she worked in the city. AND, not only does she work in the city, but she heads a research lab for immunotherapy drug development and trials, at the hospital affiliated with Dana Farber! Wow. On top of all that, the play itself was actually enjoyable and fun, and he did a great job.

(Next part is a little explicit – skip the rest if you are easily queasy.)

This weekend is a little challenging so far, as I am having trouble, again, urinating. I thought that the stents would fix this, but there is a tumor in my bladder which can throw off blood clots, and that can…block the path out. I’m drinking water to try and increase the pressure and push that blockage out of the way – I want to avoid another visit to the ER. Again, it is the simple things! Next time you run to the bathroom and feel like it is a bother, recognize that it is a good thing!

Not sure that I would say that my current trials are pure joy, but I will try to see them that way. Thanks again for all your prayers and support. I’m tired, so will wrap up here.

Love and blessings,
Marie

 

 

 

 

Tube is removed!

My Tuesday CT scan went smoothly (I get the results this coming Tuesday) and my Wednesday visit with the Wound and Ostomy Nurse gave me lots of new information to process. All good!

On Friday morning, I was scheduled to get my nephrostomy tube removed. Woo hoo! In the pre-appointment phone call, they told me this: The doctor will inject dye into the tube and make sure that everything is flowing smoothly. If it is, they will remove the tube, and no sedation needed. If not, they will make a decision of what to do, and it may involve sedation.

The uncertainty on the medical front can be a little crazy-making. The logistical side also weighs on me, as I don’t like to inconvenience people, but I cannot drive myself home from these appointments. This requires me to ask a friend to keep the whole day free to pick me up at “whatever” time and in whatever drugged shape I am in, and to find folks to manage childcare, school pick-ups, etc. To top it off, my husband was out of town.

But friends were flexible and generous, we solved the logistics, and I was eager to finish up the week of appointments. On Friday morning, the Uber arrived promptly and I got into the car, looking forward to some quiet time to settle in before my procedure.

“Hi, are you Marie?” the driver asked in his unmistakable Minnesota accent. Knowing that the typical Midwesterner is chatty, I settled in for a conversational drive. My quiet time would have to wait.

We arrived at the hospital on time (despite traffic, construction zones and rain – very impressive) and I checked in. They asked me to have a seat until they called me, so I did.

Next, two women walked in together. One was dressed like any customer you might see at Starbucks. The other was dressed in what I think of as hospital clothes: Ugly clothes that you can easily wash in scalding water or might even choose to burn. She was quite thin (like me!) and her clothes hung on her like a hanger. I’m guessing that she was the patient.

“Hi,” she cheerfully greeted the person at the check-in desk. “I’m Deborah. D-E-B-O-R-A-H.”

She chatted like I do when I am nervous, about the pencils and her students. Once she was checked in, they called for me and someone led the three of us (Deborah, her friend, and me) downstairs to the room where they prep us patients. I still wanted to have some quiet time, so I walked behind the others. We checked into pre-op, then sat together.

I noticed that Deborah was wearing a nephrostomy bag. As much as I thought I needed quiet, I was compelled to ask her about it. She lamented that no one could tell her how to live with this, and I could relate. (They only told each of us, “You’ll figure it out.”) We shared our few personal tips and tricks for wearing the bags and handling the tubes, how to sleep (which is, not), etc. She told me that, at one point, she had two of them, and she hated them. I could relate to that too. I didn’t tell her that I hoped to get my tube removed that day. We joked about having so few body parts left inside our abdomens.

Soon they brought us each to our own little curtained area so we could be prepped for our procedures, and I wished we could chat a bit longer.

The nurse anesthetist walked into my curtained area, and we immediately recognized each other from my prior procedures. She was also chatty. Clearly, I was not going to get my quiet time yet, so I put my own agenda aside and conversed.

She described what would happen in the procedure room and – I love this part – NO ONE PUT AN IV IN ME. No one. I was prepared for them to say, “Just in case we need this” but no one did. I was thrilled.

Soon they wheeled me out of my area, past all the other patients. Everyone looks so sick in this context so I try not to look at them, but I suddenly saw Deborah, and we gleefully yelled out “Hi!”

The nurse wheeled me to the procedure room, where I transferred my body face-down to another table that had an x-ray machine hovering over it. The nurse kept talking and talking, now about another patient who loved to do food-related travel and was soon going to Greece with a famous local chef. She also talked about his love of wine and how he promised her a bottle of something really special. It occurred to me that while she may not be administering anesthesia for this procedure, she was effectively distracting me. She does her job well.

She transitioned to telling me that my doctor does a wine-tasting fundraiser every September to benefit the Boy Scouts. I was intrigued. His son was in Scouts, she explained, and he fully supports his son in everything he does. Then she mentioned that he also sells handmade lanyards to raise money for autism, and I was again intrigued. I briefly shared our family story with her and the doctor appeared.

He introduced himself, then immediately turned his focus to directing the Fellow, who was doing the hands-on work. The procedure moved quickly. I loved that the doctor said all good things during the procedure, like “this looks good” and “it’s a smooth flow.” I don’t think he said them for my psychological benefit, but I was still grateful.

The Fellow injected dye, watched it on the x-ray machine, removed the stitches and the tube, and bandaged me up as the Attending Doctor guided him through it.

As they wrapped up their work, the doctor said to me, “All done. Now you never have to see me again.”

The first time I saw you, you made me cry. Gulping, devastated sobs.”

“You were furious with me.”

I laughed. “I was. I hated you.”

The nurse interrupted us. She shared that she told me about his fundraisers, and I shared that we had a few things in common. He started to tell me all kinds of stories about his son and daughter. He was obviously proud of them both and had a good sense of humor about their personalities. I loved listening to him animatedly share the details.

When he left the room, the nurse said, “I have NEVER seen him talk so long, much less to a patient. That was something.”

During college, I had a job as a bank teller. One of my favorite moments of the day was taking a super grumpy customer and shifting their mood before they walked away from my counter and into the rest of their day.

In that moment, I had that same feeling. Though I suspect that this time, I was both the teller and the customer.

As they wheeled me back to the pre- and post-op room, we passed Deborah, getting wheeled to her procedure. The nurses stopped so that we could connect one more time.

Maybe I wasn’t supposed to have a quiet morning. Apparently, it wasn’t what I needed.

You can’t always get what you want
But if you try sometimes well you just might find
You get what you need

Rolling Stones

I hope you find that you get what you need, as well as what you want!

Blessings and love,
Marie

Angel appearance

Quick health update: All appointments went well! Thank you so much for your prayers, positive thoughts, and everything else. I swear that you can move matter, and I really appreciate your efforts on my behalf. Thank you.

I have three stories to share, so I will do them in three separate posts. The first one is from Friday night, after a long three days of medical appointments.

Suddenly craving pad Thai, I googled to find the best places near me. (Does one capitalize Google as a verb?) The top recommended spot wasn’t exactly “near” me but the drive was tolerable.

If you have spent time with me in person, you may have noticed that I rarely carry a purse or wallet, and even more rarely carry cash. I usually carry my phone, whose case holds exactly two credit cards.

Back to pad Thai. I called, placed my order, grabbed my phone (with its two credit cards) and made my way to the restaurant. Once inside, I noticed an ATM machine. That usually means the establishment is Cash Only. Sure enough, when my eyes scanned the counter, I saw the large sign: CASH ONLY.

No-name ATM machines (with their additional withdrawal charges) annoy me, but it was more annoying to drive back home to get cash that I wasn’t even sure I could find. So, I tried my Visa card in the ATM. Didn’t work. I tried my American Express. Also didn’t work.

I called American Express and while I got excellent service from a real live person, I couldn’t get cash. I hadn’t set up the process in advance and it takes 21 days. Too long to wait for pad Thai.

I called Visa. Because it was issued by the same bank where we have our checking account, I thought I would have some luck with them. But despite giving them every bit of identifying information, they couldn’t share my password or help me get cash.

Unsure what else I could do before I left, I decided to try the card one more time and guess one more password.

While I was doing this, someone hugged me.

Lisa!

She and her husband had appeared suddenly, out of nowhere! It was so fun to see them there. And then, on top of that, they had CASH. Not a lot, they said, but they were willing to share what they had.

In my usual greedy way, I ordered way too much food. I was willing to accept some cash, but I didn’t want to take all their cash. But guess what! Whoever took my order over the phone thought I said that I would call back to confirm the order.

That meant that they hadn’t even cooked or assembled my little piggy order! I could order from scratch! Pad Thai was less than $10, and it was all I really wanted anyway. So I ordered pad Thai as Lisa and her husband handed $10 to me and went on their way.

Wow. Gratitude and awe. Angels all around. I hope you can see yours, or that your invisible ones are giving you the support you need.

Blessings.
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