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

All is good!

I’ll admit that it is way easier to celebrate God when things go well.

I’m totally celebrating! I am thanking God and all of you for all your prayers and help in making the surgery even more successful than ANYONE expected.

The plan was to place a nephrostomy for at least two weeks, to make sure there is no infection, to deflate the kidney and make it easier to place the stent, etc. And the doctor told me, he never places stents in the first surgery because he always has to go back and fix it.

So I was prepared (as much as I guess I could be – was still freaking out) to have the nephrostomy and a constant companion bag.

BUT they not only placed the tube but they also PLACED THE STENT!! We were thrilled.

The show isn’t done: This is sort of a “starter stent” and I have to have the “big girl stent” placed another day. And I still have a tube hanging out of my back, along with a huge bandage (and still no showers allowed). Awkward.

But, really, NO BAG for the expected 2-4 weeks! I had it for about 36 hours, more than enough for me, as I’m running out of places to hide bags under my clothing. Woo hoo. Hopefully soon, I can have the tube removed and shower again. But in the meantime, I am THRILLED about the forward progress!

I know for sure that your prayers and support made the difference. So much energy going that way. Thank you. When I was under conscious sedation, I could feel it. I believe that faith can move mountains. What a difference! Thank you.

If you want a story from the day, here is one. Otherwise, thank you for reading this far and for all you have done with your connection to God and the great energy grid! Sending love love love! And, now, this story:

I arrived pretty nervous, but EVERYONE I encountered was not only pleasant but also uplifting. After I signed in, the receptionist sent my husband to the cushy breakfast area while a volunteer took me and another woman (older than I am) to get prepped.

It was a little bit of a walk, including an elevator ride, so the volunteer made small talk and I let the other woman carry the other side of the conversation. I really wasn’t into it.

When we reached the prep area, the volunteer left and the other woman and I sat in adjacent chairs, waiting to be called.

Already in chatty mode and actually quite friendly, the woman asked me, “Is this your first port?”, leading me to I assume she was there to have a port placed.

“Oh, I’m not here for a port,” I told her. “But I do have one.” And I showed it to her.

“They ran out of veins,” she sighed.

“Oh, the port is MUCH easier. Much. To be honest, it took a couple of months to get used to it.” Her eyes got wide, so I quickly added, “But now I barely think about it.”

Like me, she had a right-side mastectomy, so I told her they would likely place the port above her left breast. “I do notice it when I drive, when the seat belt hits it a certain way. Otherwise, I really don’t think about it.”

They called my name and I told her that she was going to be great. We never shared the type of cancer we were dealing with, or why I was there, but that is okay. Allowing myself to make a connection helped me to relax and regain confidence, and I hope that her procedure went just as well as mine did.

Thanks to God and to you!

Love and blessings,
Marie

 

 

Procedure on Tuesday morning

Thanks again for all your support, in so many ways. This whole ride has been crazy lately, between the medical issues and making sure the kids have a good start to school, we really appreciate all the support in whatever form it takes.

So, to ask for MORE…

I have a “procedure” on Tuesday morning to get a nephrostomy. Please send prayers and positive thoughts that this goes smoothly and successfully AND that I am not super depressed afterwards! As much as I want to believe and trust that this will be in for only two weeks, the interventional radiologist firmly planted in my psyche the thought that this might be permanent. That thought creeps out from the dark recesses of my mind at the most inopportune times.

Regardless, we can only move forward. It is sort of surreal to go about daily life knowing that on Tuesday, I have little clue how my life will change. I know that on Wednesday, Thursday and Friday, I will have a visiting nurse to help me with all this. That alone makes me feel like there will be an adjustment. I talked with another nurse on Friday – he was super nice but when I asked how to live with this on a daily basis – how to sleep and drive and keep myself clean – he actually said that I will have to “MacGyver my way through this.” I have never been good at MacGyvering anything. Besides, it is crazy, to me, that they have done so many of these yet cannot tell you how to live with it.

Looking beyond this makes me crazy too. I have something every week for the next 2+ months:

  • Procedure (to place nephrostomy)
  • Chemo
  • Procedure (to put in the stent)
  • Chemo
  • CT scan
  • Chemo
  • Procedure (in case first time the stent doesn’t work)
  • Chemo
  • Procedure (to remove nephrostomy tube)
  • Chemo

I cannot process all that, so I am focused on today. I have been doing what I can with the boys, attended a class dinner with my husband, visited with friends, took care of one child who wasn’t feeling well enough to attend school.

In the spirit of making the best of things, I woke up Saturday morning and thought, instead of looking at this as “no more showers for awhile”* I should look at it as “I really appreciate the next four days of showers.”

So I got out of bed, turned on the shower, and….lukewarm water. I knew that meant there wasn’t much left so I took a quick and not fully satisfying shower, then learned our heating system was broken. Ironic. (Thanks to my husband, it got fixed that very day.)

Right now, I am feeling good and back to being grateful for my life, even with all my external parts, and being nervous about things like the Presidential debates and the upcoming election.

Thank you for your prayers and positive vibes on Tuesday morning. I head into Brigham and Women’s at 6:30 a.m. Eastern U.S. time. And I pray my thanks for you in my life.

Love,
Marie

*I am not allowed to bathe, swim or shower for as long as I have this thing in. Only spongebaths. I asked what I should do if I sweat. The nurse laughed and said I won’t be exerting myself enough to sweat. Obviously he has not gone through menopause.

Miraculous Medal and Procedure Results

Thank you for all your support this week, through all the ups and downs. Especially the downs.

I recently lamented that I don’t see the everyday miracles like I used to.

For many years, I looked for a religious trip to Medjugorje. Medjugorje is a city in Bosnia where, in 1981, the Virgin Mary initially appeared to six children, and continues to appear to some of them today. Healing miracles have happened there as a result.

A few years ago, a friend strongly suggested that I go, but I didn’t. Then, through a series of happenings at my parish church, that friend and I were able to attend a talk by the one of the children (who is now an adult) and to hear the story of a local man (Artie Boyle) who was famously healed after his trip there.

I was newly inspired to go. I knew that I couldn’t do this on my own, and my casual search for a tour turned up nothing until about 2 weeks ago: Caroline Myss was organizing a trip. BUT it meant that I would miss the first week of school for the kids. One of boys would be getting settled in a new school and I felt that it wasn’t fair to him if he needed my support. The deadline passed, and I didn’t book the trip.

I continued to mull over my decision. Did I miss an opportunity? I felt physically and emotionally stronger than I had in a long time, and wondered if this was my good chance to travel there.

I didn’t wonder for too long though, as the events this past week overtook my life. Still, it remained in the back of my mind.

On Thursday, the day before my procedure, I needed something to distract myself. So, I opened the stack of mail gathering on my desk. Inside one of the envelopes was a Miraculous Medal! It felt like Mary was saying, you can’t come to me, but I can come to you. I am here.

I carried that medal with me, obsessively repeating the prayer for it, until the nurse made me hand it over before surgery.

Wow.

Okay – the surgical procedure. I have been so afraid to go to Brigham and Women’s hospital. My image was that you do things their way, that they have the knowledge and experience, and that I need to just let go and trust. I know myself well enough that I would get frustrated in that setting.

I was so wrong. I wanted them to use my power port, not a vein, for the anesthesia. They did discuss it with me at length, but in the end, I got to use it! There are a few drugs that I HATE and they found substitutes for those. Everyone had a good attitude and was quite pleasant. I cannot say enough good things about my experience there.

As for the procedure itself…The doctor was able to place the stent in one ureter. The other one seemed to be blocked. So, next up for me is a bigger surgery, where they make a hole through my back, into my kidney, and try to wind the stent through that way. I will have to stay overnight in the hospital for that one. (Blecch, but maybe I will again be pleasantly surprised.)

I was able to go home after I woke from the anesthesia, but I only remember waking up in my own bed. That was a little disorienting, but not as much as this: I started having hallucinations. I was having full conversations with people only I could see and hear. At 3:00 a.m, I thought a friend of mine was calling and I had a loud conversation with her over the phone. (My poor husband, awake all night with this) I kept trying to hang up and she had “just one more story.” Still hallucinating, I had another loud conversation with my oncologist. I woke up in a panic that I slept through my surgical slot; I started yelling hysterically, and I couldn’t understand my husband as he tried to explain that the procedure already happened. I woke another time in a panic saying that the kids were late for school. (They haven’t yet started school.)

My husband kept asking me questions like, “What is your name? Do you know where you are?” Sometimes I answered correctly. It all sounds funny now, but at the time, it really scared the kids. The household was a bit crazy.

I couldn’t stand or walk without help, and each time I tried to sit anywhere, I misjudged the distance and my husband caught me.

Finally, around noon today, I felt well enough to get up and take a shower. Yay!

Next steps:

  • I have chemo on Thursday next week, primarily because Tuesday is fully booked in the infusion center.
  • I will have the stent surgery sometime after that, probably the following week. They will call me to schedule it. I am trying not to think too much about that, but it keeps screaming out for my attention.

That’s about as far into the future that I can look!

Again, thank you for all your support, your prayers, love and caring.

Love and Blessings,
Marie