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

 

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

 

 

More clarity on the kidney stent program

Thank you for helping me to process all that has happened over the past week.

Over the weekend, my husband and I (and friends and folks posting here!) talked about a lot of options. Things like, if you trust a surgeon and something goes wrong, you feel like they did their best and you aren’t angry. We batted around lots of ideas and perspectives and emotions.

In between, I got a couple of significant phone calls. As I mentioned in the last post, my oncologist, who had been in Australia, called me, on a Friday night, from his car just after he landed from Logan Airport. He wanted to hear my perspective, then promised to work on this over the weekend.

On Saturday evening, my urologist called. He was the one who put in the first stent but couldn’t get the second one in. He spent a good amount of time helping me understand the path forward.

I certainly can’t complain about my medical care there. Wow.

In the end, I had more information to consider, but mostly, I felt much, much better.

Here is my summary of our conversation:

  • Although the interventional radiologist is doing the next procedure, the urologist is managing this whole process. I didn’t realize that. I thought he had done his part and then handed me off to the next doctor. Of course I would assume that I am in charge! Now, I can think of the urologist as running the show and subcontracting this part to an interventional radiologist. It is a relief to know that I don’t have to stress over how to drive this program.
  • The urologist plans for this to be a temporary tube. There is always a chance that they can’t do the stent, but that isn’t a decision for now. The plan is to do the stent, and he feels there is a very good chance that they can.
  • The interventional radiologist is focused, not on the whole problem, just this next step. So he didn’t realize this is meant to be temporary and assumed it was permanent.
  • Interventional radiologists don’t always have the best bedside manner. The urologist wholeheartedly supports me if I want to change doctors, but has worked with this guy in the OR and feels he is quite skilled. He also clearly said that if a family member needed this procedure, he would recommend this guy. So I decided to think about whether I can deal with the personality in exchange for the skill.
  • The urologist is going to contact the interventional radiologist and make the program clear, that the next step is to do everything possible to place a stent, and make sure that he is on board.

That and your supportive comments helped me to get through the weekend. Thank you.

I apologize if this feels like I am taking you on a roller coaster ride. I don’t like that feeling myself. I was so, so scared, and you really helped me through that part.

Someone made a comment on my last blog post, and I will paraphrase it here. I used to walk around with an “unspoken innate trust that what is optimal will happen, or the sense that whatever happens will ultimately be workable.” I don’t always have that lately, but life at least is helping me to see that that is still true, so am hoping to regain that feeling.

So, the roadmap looks like this.

  1. I will get the nephrostomy.
  2. Roughly two weeks later, I will have the procedure to place the stent.
  3. If the stent can be placed, great. If not, then I can decide that maybe the bag isn’t as horrible to live with as I feared, or that I just can’t stand to live with that bag. If the latter, then we take it out and let the kidney go.

Although the schedule for the next five weeks looks crazy (every other week will have either chemo or a procedure requiring anesthesia), I can take a deep breath and get through it.

Thank you again.

But just to ask for more – I have chemo tomorrow (Tuesday). Please keep me and all of us in your prayers for an effective chemo session!

Love and blessings,
Marie

Next chapter in the Kidney Stent Story

Thank you so much for your support. I know that I cannot do it without it. Even prayer is failing me lately.

Want to hear the latest? A quick recap: I needed kidney stents. The urologist was able to put one in, but not the other. MY UNDERSTANDING was that I had to see an interventional radiologist so that he or she could go through my back, through the kidney, and place the stent into the ureter. More complicated, but fine.

My oncologist felt it should be done as soon as possible, which would be the week of Sept 26. I was scheduled to go to John of God the week of Sept 26 so I needed to cancel that, which bummed me out. And, given my chemo schedule, that meant that I would meet the interventional radiologist this week, chemo next week, and procedure the week after that. A crappy series of events, but I’ve done harder things.

Their recommended interventional radiologist was not available on that timeline, so I booked with another. Yes, you can see a bad moon a-risin’!

I showed up for my appointment and someone took vitals and left. Fine. A nurse practitioner arrived with a stack of papers that it looked like she would give me at the end of the visit. Fine. She started to talk about this tube in my back. I knew they might do this as a temporary measure while the stent healed. Fine.

But then she started talking about coming in every three months to have the tube replaced and having a home health aide come to my home every week or maybe every few days in between. My head started spinning.

“How long will I need this? I thought it was just temporary until the stent healed.”

“Everyone needs it a different amount of time.” She looked at me sideways.

“But THREE MONTHS? How long does it take the stent to heal?”

Ignoring my question about the stent, she added, “And you need the home health aide. Don’t cancel that.”

I don’t mind a home health aide as a temporary thing. I relied on them to get used to the idea of having a colostomy bag and learning how to care for myself and it. But, despite all these weird things on my body (mastectomy, colostomy bag, tumor coming out of my belly button, a fistula to manage, and a tube coming out of my chest every other week for chemo, to name a few), I kind of like having a place, like my own home, where I can pretend to be a normal person.

Having a home health aide come to my home destroys my little mythical world. Not only that, it is inconvenient. You have to plan your day around their arrival. They are sometimes late. They take your blood pressure, temperature, oxygen – in other words, they don’t just come in, change the dressing and leave. They have a whole intrusive process. And there is a different person every time, so, no relationship. Plus, if I need home health care, I wonder if I will be so sick that I can’t get my butt out of my house and to a medical facility.

But the biggest thing is, a health care worker marching into my house makes my home feel like a treatment area. I hate that.

My more immediate issue, though, was that I felt like the nurse was talking about a different procedure than I expected. She never mentioned a stent. Only going on and on about the nephrostomy tube or bag or whatever.

Since she couldn’t seem to talk about my topic, I thought I would ask her questions about her topic.

How do I sleep with this? How do I dress? How do I live with this? What does it look like? Does it require taping anything to my body? Can I sit back in a seat? Can I lie on my back for acupuncture?

“You cannot sleep on your back because the tube is sticking out of there. The bag, at all times, needs to be below your kidney, so you need to place it before you go to sleep and don’t move around. You will learn as you go,” she said with a confident smile. “Some of those answers are in these papers.”

I get to read about it after I leave? When I can’t ask follow-up questions I guess. And learn as I go? Am I the first person to deal with this?

I’m much better dealing with these life changes if I have preparation. I’ve had enough of those to know.

“I’ll get the doctor,” she said, apparently done with her part of the conversation.

About 10 minutes later, she returned with the doctor. He greeted me pleasantly and I was hopeful. Fool that I am.

He, too, focuses his little speech on a nephrostomy, and I went along with it, following his lead on the topic, asking questions about the procedure and the follow-up.

In retrospect, I had hoped that he would say, “We are putting in a stent, but first we have to do a nephrostomy.” And then go on to describe the multi-step process, culminating in my having my body back without tubes.

But he stays focused on the nephrostomy and never mentions a stent. Hmmm. So I ask him.

“I thought I was getting a stent.”

“This will be much easier. Trust me.”

Oooh. I have never been good with phrases like “trust me.” And after enduring this election year, I cringe hearing it. And, this will be much easier? For whom?

There was so much going on that I didn’t know where to start. Focus on facts, I thought. Maybe something tangible. I studied the doctor’s physical characteristics. He was shorter than me, with dark hair and lamb chop sideburns. He had a tiny diamond earring in his left ear and a wedding band on his left hand.

I took a deep breath and thought, someone, at some point, loved him enough to marry him. They think he is a good guy. Maybe he is a good guy. He means well. Maybe he just is bad at communication.

I really should have brought someone with me.

I decided to take control of the conversation. These are some snippets of the conversation as I remember them:

Me: I thought I was going to get a stent. That you were going through the kidney to put in a stent.
Him: Well, if you really want me to, I can try.

What? I thought. If I really want him to? I thought that was the program….

Me: If I can, I want the stent.
Him: Let’s play Let’s Make a Deal. You want to play Let’s Make a Deal? I can do that.

Okay, what is up with all that? I don’t want him to place the stent as a “favor” to me. I don’t want to try and place a stent if it is going to screw up my body even more. I don’t want to try if it means a useless procedure. I DO want someone to say “It is likely that I can do this” or “Probability is low because…” I want someone to be on my side, to understand how huge this is for me.

And seriously, “Let’s Make a Deal”? Once, okay, weird, but he used it multiple times throughout our conversation.

Here is another….

Me: I’m focused on quality of life. What will this be like to live with?
Him, smiling: This will improve your quality of life.

WHAT?

I’m thinking about the hassle it will be to shower, as the bandage (around the site and is not a temporary thing) cannot get wet. I have to wrap myself in Saran Wrap to shower, and make it quick. I can never again take a bath or go in a swimming pool or the ocean.

I’m thinking about sleeping with tubes and drainage bags and getting out of bed in the middle of the night to pee and forgetting to grab all the bags I need to and having one detach. And what about if I am drugged, which doesn’t happen often but happens often enough.

This was crazy. I started crying, and then I started sobbing. He gave me a consent paper to sign, and a phone number to call to set up the procedure. He and the nurse left the room. And then I left.

Okay, here is another weird thing. I am IN THE OFFICE. With a waiting room and staff and check out people. And the phone number they gave me to call to set up the appointment was THE OFFICE NUMBER. But they want you to call to set up the appointment.

I left the office, took the elevator down one floor, and called the number to sign up for a procedure day. And then I raced out of the hospital.

I paid for parking, found my car, and started sobbing again. I didn’t know what to do, so I frantically made phone calls, including to my oncologist’s office and the social worker, leaving messages for everyone I could think of.

I had five minutes (after paying for parking) to leave the garage, so I started driving. It’s amazing that I made it home. I was heaving sobs as I drove while I talked with my friend Julie on the phone, who alternately asked me to pull over and tried to keep me calm when I insisted on driving.

When I arrived home, our dog excitedly came to my car and jumped in and on my lap. He is rarely outside and he never sits on my lap, so I took this as a sign that somehow, I would be supported.

People started calling me back, and I either didn’t answer or I talked their ear off. The social worker gave me some ideas, and the oncology nurse practitioner told me that he would contact my oncologist, who was in Australia.

I’m finally calming down. Still freaking out a bit, but at least I can speak clearly. My oncologist called me as soon as he landed at Logan and we discussed the option of switching doctors versus the timeline we set up. He promised to work on it over the weekend, which was above and beyond the call of duty. I feel like someone has my back. (Ha ha – especially since that is where the nephrostomy would go…)

I have so many parts outside my body that are supposed to be inside (and out of sight) that I’m starting to wonder if my body is turning itself inside out. I’m spending a lot of time appreciating my back, especially the fact that there is currently nothing hanging out of it. I wonder what life will be like. I’m noodling over the best way to explain this to the boys.

Thank you for helping to keep this all together. It really is unbelievable. But like everyone, we do what we need to do and continue moving forward. Deep breaths.

“You are the sky. Everything else – it’s just the weather.”
– Pema Chodron

Love and blessings,
Marie

 

 

 

 

 

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

“Procedure” on Friday morning

Not to fill your inboxes this week, but here I am again.

This time, I’m here to ask for prayers and positive thoughts for my “procedure” on Friday morning.

I’m set for a 6:00 a.m. arrive, 7:30 procedure time, to have stents placed in both ureters. I will be under general anesthesia, which alone makes me nervous. The tumors around the site give all of us (including the surgeon) pause, but I’m hopeful that they can work between those. I have to actively keep my thoughts on the positive. Luckily, I’ve had lots of practice with this. And a good medical team on board.

Thank you for any good wishes and visualizations and spiritual support that you can send my way. I appreciate your being there with me.

Love and blessings,
Marie