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

 

Weekend health update

Last weekend, we suddenly had the opportunity to take a trip I’ve dreamed about for the past 10 years. We were scheduled to leave on Saturday morning.

On Friday night before we were to leave, I couldn’t sleep. I had so much pressure in my back that I felt like gas could come out of my left kidney.

Eventually I put my hand on my back and found that my shirt was soaked. The bandage around the tubes was soaked. That can’t be good. It was 1:30 a.m. and I reluctantly woke my husband.

We cleaned the area and replaced the bandage. My husband explained that the kidney was unable to empty via the stent. The contents had to go somewhere, so they filled the tubes in my back. Once the tubes filled, the kidney kept emptying but overflowing out of the holes in my back.

Since this was coming out of the tubes, we hooked the tubes to the bag. Ugh. I was really looking forward to getting my big girl stent and getting rid of these tubes. Now I not only had the tubes, but a longer tube attached to them and a bag.

I didn’t want to wear yet another bag. And with about six hours to go until we left for our trip, I wasn’t comfortable traveling. I didn’t know how often I needed to empty this bag, whether there would be upcoming complications, or even how to dress to hide the contraption.

We decided that my husband and one of the boys would do the trip, and I would stay home with the other. As they travelled west, I sat around in my bathrobe all day feeling sorry for myself.

On Sunday, I pulled myself together and tried to get dressed.

At the same time, another situation required my attention. Although the bag for my left kidney was filling regularly, my right kidney still emptied via my bladder. However, I hadn’t emptied my bladder all Saturday and most of the day on Sunday. I tried, but nothing.

After calling three different doctors, I decided to go to the ER.

Once there, they catheterized me and at some point during this process, the urologist suggested that they might send me home WITH THE CATHETER! Suddenly, the nephrostomy bag didn’t seem a such a big deal. Perspective, huh?

Thankfully, they removed the catheter before I left, and they alerted the various doctors that I needed to see later that week.

I did a phone check-in with my primary care doctor. (Love her.)

I saw the urologist on Tuesday – no real problems they could find.

And on Friday, tomorrow, I have a procedure at 6:30 a.m. to see what is going on with the stent. What they find determines our next steps.

So, more conscious sedation. But hopefully more answers as well.

I would LOVE any prayers that this is all simple and straightforward and that I can get my big-girl J-J stent! Thank you.

I hope that your weekend was fun and exciting in positive ways!

Love and blessings,
Marie

Someone pointed out that I make this all sound so easy, so just to add some dimension:

• I did have to find someone to take care of our son before I left for the ER.
• This time, I texted around to find a ride to the ER rather than take an Uber.
• Once at the ER, two friends came to visit. But that environment is a harsh and draining place and definitely took a toll on one of them who stayed for the long haul. I get it.
• On Tuesday, my husband cancelled all his plans until we heard what time the follow-up doctor could squeeze me into their schedule, so that he could go with me.

My new goal is to have one full week without a single visit to the hospital!

Blessings in the ER

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Visit to the Emergency Department

Tuesday would normally have been a chemo day, but a series of events set me up for a procedure on Friday. While I do believe that God is with each of us, especially when we need him, I was having a hard time feeling the support….but I am getting ahead of myself.

This is long, so I will do it in two separate blog posts. This one will focus on the ED visit. If you want to skip the story and go straight to the bottom line, see the next post.

WARNING: This post contains explicit talk about bodily functions.

Sunday

I had trouble peeing all day. Drinks were going in, but nothing was coming out. Nothing.

That night, I called the oncologist on call (not mine) who recommended that I drink two more large glasses of water, wait two hours, and if nothing changes, head to the ED.

I left for the ED around 11:15. Because the boys were already asleep and it would be scary to wake up and find neither parent at home, my husband stayed home and I Ubered in alone. I was otherwise feeling good and knew that I could call him if I needed him.

Before I left, I texted my energy healer. Just before I reached the ED, she texted back that she would work on me.

This was a new ED for me, and I was impressed with the operations and the people. The check-in woman quickly assessed that I have a complicated history and decided to look it up rather than make me go through it all. Her approach and attitude were above and beyond anything I have experienced in an ED.

Very early Monday morning

My initial ED nurse, Tori, was wonderful. We bonded over kids (as in, when they wake you at 5:30 a.m, iPods are okay, but snacks are not – you have to draw the line somewhere!) and laughed alot. She gave me a cup to pee in and said, “I have to give you this cup, and you have to try, even if we know nothing is going to happen”

The floodgates opened. I am always in awe of how my energy healer works!

But I was there, so we went through the tests. Blood tests, including kidney function, which was fine. Ultrasound, to figure out if my bladder was actually empty. (They couldn’t tell.) And then the resident doctor in charge of my care wanted to do a CT scan.

I fought this scan. I argued that I was due for a scan in two weeks and I hate extra radiation. The resident doctor thought I was being ridiculous – I’ve had so many, what was one more scan? I wanted to flip him off. He listed lots of low-probability but scary outcomes. I’m used to playing the odds, and I’m feeling strong these days so pushed back on them all. He pointed out that I might need a stent and waiting two weeks could endanger my health. That resonated somewhere deep within that I didn’t want to acknowledge, but that internal vibration made me consider it a little.

I told him that I would call my husband, and he asked what information I would get from that.

“He’s a radiologist.” Thankfully, that shut him up and he walked away for awhile so I could figure this out. I called my husband for his opinion, as well as the oncologist on call. They both said it could go either way.  I finally gave in and did the scan.

The CT tech was super nice and made that procedure go as smoothly as ever, and when I returned, I asked for a bottle of water to help flush the contrast out of my body. The gentleman helping me told me that they didn’t have bottled water but he could get a pitcher of water for me. I cringed, thinking that he was going to get it from the bathroom sink, but when he returned with the pitcher, he told me that it was reverse osmosis and it actually tasted really clean. Life was looking up.

Time for the shift change, so I had a new resident doctor and a new nurse in charge of me. The new resident doctor told me that the CT scan showed tumor pressing on my bladder. No surprise there. She gave me my exit papers (I was really impressed with her efficiency – that part typically takes a long time), and told me to sign them and give them to the nurse when she came to disconnect my IV.

So I waited. And waited. And then, I don’t know what triggered it, but I started vomiting.

I carry bags with me, so I was prepared for this, but I needed help. I couldn’t find the trash can. The nurse call button was far out of reach. So I started yelling for help. A cleaning person came by and said he would find my nurse.

When the nurse came, she took one look at me and said, “This changes everything. We have to admit you.”

NOOOO!

I tried to explain that vomiting is just what I do in a medical setting. I showed her the 15 bags that I carry with me. No dice.

She left and the resident appeared, who explained that they needed to admit me and if I left, it would be against medical advice. Fine with me. It was after 3 a.m. I wanted to go home.

The nurse returned and asked if I wanted my IV to be disconnected now. As opposed to when??? She said, “Well, in case you are admitted.”

“No. Disconnect me now please. I am going home.” I had to reiterate this a few times, but she finally disconnected me.

“The attending physician would like to talk with you.”

“Fine.”

More waiting. Then my nurse took me to where the attending was. As we walked there, I noticed that I was the ONLY patient remaining in the ED. All the other beds were neatly made and ready for the next influx. All the doctors and nurses were far, far away, all in one area, typing on their computers and iPhones. I waited awhile for the attending, then said, “I’m just going to leave.” I signed the papers that I had and headed out.

I was finally free, and hoped that I didn’t need to return. When I got into the Uber, the driver offered me a breath mint. At first I declined, then remembered that maybe I needed one…..