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

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!

Blessings in the ER

Sunday night in the ER, I registered and they sent me to the waiting room. It was initially empty, but I was soon joined by a few other patients, one of whom spoke loudly and angrily. Every sentence contained at least one swear word.

“Who would XXX-ing do this? What a XXX-XXXX XXX-er! The Galleria is high-class mall! And they didn’t do anything to help me.”

There would be short a pause and he would begin his rant again. I covered my ears. The man next to me put in headphones.

Eventually, a security guard approached him and explained that there were other people around him and he needed to keep his voice down.

When they called me back to the ER, I was relieved to be away from all that. They gave me a space that was separated from other patients by curtains (no walls). And before too long, I could hear the guy on the other side of the curtain. Yes, that same guy.

I decided to listen to his story. Filtering out the expletives, I gathered that he had been at the “high-class Galleria mall” when someone punched him in the face with brass knuckles.  The Galleria called the ambulance for him, and he said they told him that the police would meet him at the ER.

The nurse was infinitely patient as she explained how she would do his stitches, and that he needed to be quiet because there were a lot of sick people around. Some of them even had cancer. (I didn’t like being on that list – made it sound like the sickest of the sick.)

While the nurse worked, he continued his ranting and raving, repeating his story over and over, and the nurse eventually told him that she was done and he was fine to leave.

“I need to find a dry place to sleep tonight.”

Yikes. He had to be homeless. And it was raining. That would stink. Maybe I heard him wrong. But then a friend of mine came to visit and noted the odor, further convincing me that this guy was homeless.

He continued on his rant. “Where are the XXX-ing police? I need to file charges. The Galleria said they would be here!” It occurred to me that they probably told him that to get him to be quiet.

His body pushed through the curtain into my little space, and I could see that he was in the far back corner of his little space. He was trying his hardest not to leave. I felt badly for him – there was no way for me to know what it was like to walk in his shoes – but having him not only verbally but also physically in my space was a bit much for me. I asked him to get back into his space, and he quickly moved. My heart broke for him: He so readily accommodated my request while he could not get anyone to give him what he was asking for.

I remained struck by his statement of finding a dry place to sleep.

As I sat there under the bright ER lights in my way-too-big hospital gown, nervously waiting to see what the plan was for me, I gave thanks that once I got through with all this, I could return to a safe and warm home with a cozy bed and family around.

May you feel all the beautiful blessings in your life,
Marie