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

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!

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.

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