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

Angel appearance

Quick health update: All appointments went well! Thank you so much for your prayers, positive thoughts, and everything else. I swear that you can move matter, and I really appreciate your efforts on my behalf. Thank you.

I have three stories to share, so I will do them in three separate posts. The first one is from Friday night, after a long three days of medical appointments.

Suddenly craving pad Thai, I googled to find the best places near me. (Does one capitalize Google as a verb?) The top recommended spot wasn’t exactly “near” me but the drive was tolerable.

If you have spent time with me in person, you may have noticed that I rarely carry a purse or wallet, and even more rarely carry cash. I usually carry my phone, whose case holds exactly two credit cards.

Back to pad Thai. I called, placed my order, grabbed my phone (with its two credit cards) and made my way to the restaurant. Once inside, I noticed an ATM machine. That usually means the establishment is Cash Only. Sure enough, when my eyes scanned the counter, I saw the large sign: CASH ONLY.

No-name ATM machines (with their additional withdrawal charges) annoy me, but it was more annoying to drive back home to get cash that I wasn’t even sure I could find. So, I tried my Visa card in the ATM. Didn’t work. I tried my American Express. Also didn’t work.

I called American Express and while I got excellent service from a real live person, I couldn’t get cash. I hadn’t set up the process in advance and it takes 21 days. Too long to wait for pad Thai.

I called Visa. Because it was issued by the same bank where we have our checking account, I thought I would have some luck with them. But despite giving them every bit of identifying information, they couldn’t share my password or help me get cash.

Unsure what else I could do before I left, I decided to try the card one more time and guess one more password.

While I was doing this, someone hugged me.

Lisa!

She and her husband had appeared suddenly, out of nowhere! It was so fun to see them there. And then, on top of that, they had CASH. Not a lot, they said, but they were willing to share what they had.

In my usual greedy way, I ordered way too much food. I was willing to accept some cash, but I didn’t want to take all their cash. But guess what! Whoever took my order over the phone thought I said that I would call back to confirm the order.

That meant that they hadn’t even cooked or assembled my little piggy order! I could order from scratch! Pad Thai was less than $10, and it was all I really wanted anyway. So I ordered pad Thai as Lisa and her husband handed $10 to me and went on their way.

Wow. Gratitude and awe. Angels all around. I hope you can see yours, or that your invisible ones are giving you the support you need.

Blessings.
Marie

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

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

Angels in our lives

Last week was my first time on a new chemo drug. Thank you for your prayers and positive thoughts on my behalf! I’m grateful that it went smoothly, and we just have to iron out some kinks. For example, I normally get IV Ativan, which knocks me out. This time, they added the max dose of Benadryl to the mix (in case of an allergic reaction to the new drug). Wow. For two days afterward, I felt drugged and had a horrible headache. As I said, we have kinks to work out.

As expected, the rash has appeared on my face. I am supposed to stay out of the sun. I endure these New England winters so that I can enjoy a sunny, hot summer. I will now be spending much of it in A/C. Sigh.

The rash itself resembles acne more than a rash. I have stopped counting the white pussy things at 30, and I forgot how much pressure they put on your skin. Plus the ones that are just red are itchy, and my scalp is itchy as well. All of this is annoying but bearable, and I try not to look in the mirror too often.

The chemo drug itself leaves me feeling differently than the prior drugs – a little out of sync with the world around me. I suppose that will be my new normal and I will get used to it.

On the good news front: My energy level seems to be better. For example, on the prior chemo regimen, on Thursday nights, I was always asleep and mildly nauseous. This week, though, on Thursday night, I washed my car (with help from one of our sons). That never would have happened on my previous chemotherapy. Lemonade! And I have one more week before I head back.

——————-

My husband has known Harriet since they attended kindergarten together, though they didn’t stay in constant contact. Many years later, at their 25th high school reunion, I met Harriet and was instantly drawn to the angel inside her. I followed her around like a puppy dog – I loved being around her and breathing the same air.

We started off doing fun things together, like visiting with her family in Memphis and cheering her on as she ran a half-marathon in Nashville.

Then suddenly (looking back), my life took this weird medical turn. She came to Boston and sat with me during fertility treatments, and was there for me as we mourned a late miscarriage.

When our older son was born, she dropped everything and traveled to Indiana to take care of all of us – letting us know what baby things we would need, doing our laundry, getting food for us, watching the baby so we could sleep, filling us with confidence that we might just be able to do this parenting thing.

In the midst of getting her master’s degree, she helped to me heal after cancer surgeries, and held my hand during chemo sessions. She supported me without pity while I cried. When I craved a particular pair of leg warmers (with a complicated cable stitch), she knitted them, even though she had long ago put away her knitting needles and her fingers didn’t work as smoothly as they once did.

Of course, she’s woven fun into our visits, including the time she taught my kids to say, “Thank you for my lovely dinner. May I please be excused?” We still love that!

But last week – wow. I don’t know how to even BE with this, much less say it, but here goes. Harriet flew to Boston to be with her wonderful mother and sister as her mother passed away.

During the days that followed, when I should have been there for my friend, she appeared at Dana Farber to sit with me during blood draws, doctor visits, and chemotherapy.

It still brings tears to my eyes. Harriet is an angel on earth. She does God’s work as she lives and breathes.

I know that Harriet is unique. I also know that this is a big world. So I hope you can recognize the Harriet in your life. As much I appreciate her, it can never be enough.

Love and blessings,
Marie

Good people

I start a new chemo regimen tomorrow (Tuesday) and I have to admit that I am a bit apprehensive. Thank you for your prayers and positive thoughts, and your support of me and my family in every way.

It is so hard for me to articulate the various ways in which your support graces our lives, but a friend sent this to me, from Father Fleming’s blog ConcordPastor.blogspot.com. It describes so many ways in which you are there for us and letting holy light shine through you. Thank you. I would love to be as supportive to you, and always hope that you don’t need it!

Love,
Marie

 I’ve been noticing, Lord, how many good people
really good people, are part of my life.
generous people
who selflessly give…
those who are kind,
without pretense or guile…
folks who forgive,
whose pardon is healing…
the ones who are holy
and don’t even know it…
folks who are gentle,
never harsh, rough or coarse…
those who are strong,
whose help lifts me up…
the ones who are pure
in thought, word and deed…
those of conviction
whose zeal never flags…
friends who are faithful
whose love never fades…
those who are happy
with genuine joy…
the honest ones, Lord,
whose truth is a gift…
folks of compassion
with patience unending…
friends who are loyal
when needed the most…
those who help me
without my asking…
people of prayer
whose presence is peace…
Good people, O Lord,
so many good people there are in my life…
They’re more generous and kind,
forgiving and holy;
gentler, stronger, purer by far;
more deeply convicted, faithful and joyful;
more honest, compassionate, loyal and helpful;
more thoughtful and prayerful
than I…
Make me grateful for these, Lord,
and teach me their ways,
these people, these friends
whose goodness is yours…
Amen.

Good vibrations

These past few summer weeks have been filled with life events. We were sad to learn that our dear aunt and wonderful person on this planet passed away, joyfully attended a beautiful family wedding, received a visit from overseas friends (who brought Georgetown Cupcakes!), made a visit to the ER for stitches for one of the kids…I’m sure that the list isn’t complete. Oh, I had my CT scan last week – I get the results on Tuesday.

In the midst of everything, one of the boys decided to play the Tibetan bowl to help us to relax.

There are probably lots of ways to do this, but we play these bowls by first banging the mallet against the side to get it started (if you are good, you don’t need to kickstart it in this way!). Then we run the mallet around the edge of the bowl to keep the vibrations going and to change the frequency.

IMG_2303

J-man got the idea to add water to the bowl and then play it. At first he added a little water and, after he played for awhile, we noticed beautiful vibrations rippling evenly in the water. Then he added more water, and, because some of the water was already energized, we didn’t have to wait as long for the ripples to appear. And more water.

When the bowl was about three-quarters full, we saw this:

IMG_2306

The water started jumping straight up, like it was dancing! It was so fun to watch. Since our bodies are made of water, I figure that the vibrations from the bowl must energize those water molecules in a good way too.

Since I went through that really bad spell in March and April, I have slowly been regaining my strength and energy. As I recover, I’ve been especially conscious of what drains my energy and what gives me energy.

I hope that you are able to fill your day with whatever gives you energy, things that make every cell in your body vibrate together and dance.

Love and blessings,
Marie