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,

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,

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,

And things feel better!

As you know, I have recently felt disconnected from God and all the magical stuff that I love. But now, I need to tell you about this past week…

I was supposed to go see John of God at Omega in Rhinebeck, NY. I have been seeing him, either in Brazil or North America, for a number of years, as I find it worthwhile on many levels. But this year, I had to cancel due to my procedure.

They say that the entities who work with John of God begin to work on you when you set your intention and book the trip. Some years, that has been obvious. Other years, more subtle (as in, I can’t tell at all).

This year, I saw nothing. But then, I was in my grumpy mood and wasn’t about to see anything, I guess.

Now that I am at the end of the week, I will share a couple of stories with you that I found fascinating.

“Random” meeting

Nancy and I planned to go to Omega together, but she was there by herself (among 2,000 other people) this year.

At lunchtime, all 2,000 people converge on this tiny lunchroom, and you find a seat anywhere you can. Sarah scanned the room and there were few, if any, open seats, but she found one next to Nancy.

They chatted over lunch for about 45 minutes and, when they got up to leave, Nancy mentioned that she was supposed to travel here with her friend, Marie….

Sarah said something like, “This can’t be the same Marie!”

What a “random” meeting! I loved that!

Divine guidance

As you might remember, my surgery went better than anyone expected. The nephrostomy went smoothly. And, despite the fact that the doctor said that he NEVER places a stent in that same first surgery, he placed the stent. “It was just clear,” he told my husband. Yay!!! Really glad that he had some divine guidance and followed it!

Lovely surgeon

You might also remember that I wasn’t crazy about my surgeon, but my urologist calmed me down.

When they were prepping me, a young, very nice doctor came to see me. I asked if he would be doing the surgery. “No, I’m the resident. I’ll be in the room observing. Dr. XxXx will do the surgery.”

That was an unfamiliar name and I wasn’t sure if I was crazy about the switch.

“Who is Dr. XxXx?” I asked.

“The Fellow,” he replied. “Dr. XYXY is attending.”

Then he said goodbye, see you in surgery, whatever.

I looked at my husband-the-doctor.

“You are at a teaching hospital. The room will be filled with all kinds of doctors learning.

“I know. This is what I signed up for. Still…”

And they wheeled me in.

Just before I went under, this amazing woman appeared by my side. She seemed kind and competent.

“Hi, I’m Dr. XxXx.”


And finally, on a personal note…

Without going into too much detail, there is something that one of our boys has wanted in his life for a long time. We couldn’t see a way to make that happen – there were lots of obstacles, the logistics seemed to be crazy, it just wasn’t going to happen.

And then, within a very short period of time, circumstances changed to allow what he wanted to become reality. We are still working on it, but the path feels clear and joyful, and I’m so excited for him. I’m looking forward to this more than anything else right now, even more than a vacation.

Right now…

Sitting in so much gratitude and wonder, and soaking it all in. Thanks for taking this path with me, and hoping you are feeling the light. Thank you for all the support you gave as I walked through a darker place, and for all your prayers and positive thoughts when I could generate none of that. You helped all of this come about, and helped to move me to a better place.

Chemo tomorrow (Tuesday) morning…

Love and blessings,

Hab 1:2-3; 2:2-4

How long, O LORD? I cry for help
but you do not listen!

I cry out to you, “Violence!”
but you do not intervene.

Why do you let me see ruin;
why must I look at misery?

Destruction and violence are before me;
there is strife, and clamorous discord.

Then the LORD answered me and said:

Write down the vision clearly upon the tablets,
so that one can read it readily.

For the vision still has its time,
presses on to fulfillment, and will not disappoint;

if it delays, wait for it,
it will surely come, it will not be late.

The rash one has no integrity;
but the just one, because of his faith, shall live.

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,



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.


*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.

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,