Onto the next big thing…

Consider it pure joy, my brothers, whenever you face trials of many kinds.
James 1:2

This timely sentence popped up on my Facebook feed this morning. I so appreciate your support, especially through this most recent stretch of medical appointments, so wanted to share the news from last week.

On Tuesday, we saw my oncologist to get the results of my CT scan. Basically, all of the tumors have grown, so this chemo apparently isn’t working. Bummer for that, and also because my quality of life was so much better on this chemo than on anything else I’ve done!

I need to add that, before this most recent chemo (Erbitux), I was doing FOLFIRI and I recognize that I was super lucky with that. For most people, FOLFIRI tends to work for months, but I, somehow, got SEVEN YEARS out of it. I remain grateful for that. I guess I expected the same for this new one.

Thankfully, I have a few other chemo options, and we are looking into immunotherapy options as well.

So no chemo this week. The anxiety is enough – ha ha. We will use the time to make a decision and then move forward with the chosen chemo after that.

The other good news is that I was able to attend our son’s fourth grade school play. Before the play started, I talked with a mom who was sitting nearby. Making conversation, I asked if she worked in the city. AND, not only does she work in the city, but she heads a research lab for immunotherapy drug development and trials, at the hospital affiliated with Dana Farber! Wow. On top of all that, the play itself was actually enjoyable and fun, and he did a great job.

(Next part is a little explicit – skip the rest if you are easily queasy.)

This weekend is a little challenging so far, as I am having trouble, again, urinating. I thought that the stents would fix this, but there is a tumor in my bladder which can throw off blood clots, and that can…block the path out. I’m drinking water to try and increase the pressure and push that blockage out of the way – I want to avoid another visit to the ER. Again, it is the simple things! Next time you run to the bathroom and feel like it is a bother, recognize that it is a good thing!

Not sure that I would say that my current trials are pure joy, but I will try to see them that way. Thanks again for all your prayers and support. I’m tired, so will wrap up here.

Love and blessings,
Marie

 

 

 

 

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

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.”

YES!

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,
Marie

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.

Miraculous Medal and Procedure Results

Thank you for all your support this week, through all the ups and downs. Especially the downs.

I recently lamented that I don’t see the everyday miracles like I used to.

For many years, I looked for a religious trip to Medjugorje. Medjugorje is a city in Bosnia where, in 1981, the Virgin Mary initially appeared to six children, and continues to appear to some of them today. Healing miracles have happened there as a result.

A few years ago, a friend strongly suggested that I go, but I didn’t. Then, through a series of happenings at my parish church, that friend and I were able to attend a talk by the one of the children (who is now an adult) and to hear the story of a local man (Artie Boyle) who was famously healed after his trip there.

I was newly inspired to go. I knew that I couldn’t do this on my own, and my casual search for a tour turned up nothing until about 2 weeks ago: Caroline Myss was organizing a trip. BUT it meant that I would miss the first week of school for the kids. One of boys would be getting settled in a new school and I felt that it wasn’t fair to him if he needed my support. The deadline passed, and I didn’t book the trip.

I continued to mull over my decision. Did I miss an opportunity? I felt physically and emotionally stronger than I had in a long time, and wondered if this was my good chance to travel there.

I didn’t wonder for too long though, as the events this past week overtook my life. Still, it remained in the back of my mind.

On Thursday, the day before my procedure, I needed something to distract myself. So, I opened the stack of mail gathering on my desk. Inside one of the envelopes was a Miraculous Medal! It felt like Mary was saying, you can’t come to me, but I can come to you. I am here.

I carried that medal with me, obsessively repeating the prayer for it, until the nurse made me hand it over before surgery.

Wow.

Okay – the surgical procedure. I have been so afraid to go to Brigham and Women’s hospital. My image was that you do things their way, that they have the knowledge and experience, and that I need to just let go and trust. I know myself well enough that I would get frustrated in that setting.

I was so wrong. I wanted them to use my power port, not a vein, for the anesthesia. They did discuss it with me at length, but in the end, I got to use it! There are a few drugs that I HATE and they found substitutes for those. Everyone had a good attitude and was quite pleasant. I cannot say enough good things about my experience there.

As for the procedure itself…The doctor was able to place the stent in one ureter. The other one seemed to be blocked. So, next up for me is a bigger surgery, where they make a hole through my back, into my kidney, and try to wind the stent through that way. I will have to stay overnight in the hospital for that one. (Blecch, but maybe I will again be pleasantly surprised.)

I was able to go home after I woke from the anesthesia, but I only remember waking up in my own bed. That was a little disorienting, but not as much as this: I started having hallucinations. I was having full conversations with people only I could see and hear. At 3:00 a.m, I thought a friend of mine was calling and I had a loud conversation with her over the phone. (My poor husband, awake all night with this) I kept trying to hang up and she had “just one more story.” Still hallucinating, I had another loud conversation with my oncologist. I woke up in a panic that I slept through my surgical slot; I started yelling hysterically, and I couldn’t understand my husband as he tried to explain that the procedure already happened. I woke another time in a panic saying that the kids were late for school. (They haven’t yet started school.)

My husband kept asking me questions like, “What is your name? Do you know where you are?” Sometimes I answered correctly. It all sounds funny now, but at the time, it really scared the kids. The household was a bit crazy.

I couldn’t stand or walk without help, and each time I tried to sit anywhere, I misjudged the distance and my husband caught me.

Finally, around noon today, I felt well enough to get up and take a shower. Yay!

Next steps:

  • I have chemo on Thursday next week, primarily because Tuesday is fully booked in the infusion center.
  • I will have the stent surgery sometime after that, probably the following week. They will call me to schedule it. I am trying not to think too much about that, but it keeps screaming out for my attention.

That’s about as far into the future that I can look!

Again, thank you for all your support, your prayers, love and caring.

Love and Blessings,
Marie

Cowboy Up!

We had a fabulous family vacation at a dude ranch in Arizona.

Front of Ranch

Going into this vacation, I wasn’t sure what to expect. Our older son loves horses, but they only allow kids to ride if they are in the kids’ program, and group activities are not really his thing. Our younger son loves groups, but he broke his wrist and it would be in a cast. My husband has a lifelong fear of horses. And given my current physical state, I would not be able to ride. It didn’t look like a winner of a trip.

But I have learned to listen when I am guided to do something, so we set off.

The ranch offers a variety of activities. On a typical vacation, we do everything together, but here, there was so much going on that we also did things on our own. The counselors for the kids’ club were fabulous with our older son, and he took group riding lessons every single day. Our younger son LOVED the kids club; he attended every hour that it was open and talked about it when it was not. My husband rode daily and overcame his fear of horses. He also did a lot of mountain biking. And I was able to do a hike, some writing, and relax.

I also got to meet a blogger I follow, as well as her family. That was a fun surprise!

Karen and me

Toward the end of the week, we all attended a BBQ. It was outside, with fire pits, s’mores and a guitar player crooning country songs. (Obviously, we arrived early. It did get hopping after awhile.)

Ranch BBQ

The kids ran off to play together, with our younger son in the thick of things. I watched the group from afar, and suddenly, it looked like another kid was kicking him. Soon, our son and another boy ran over to me.

The other boy spoke breathlessly. “That kid keeps kicking Lefty, for no reason!” (Our son had picked up that nickname early in the week, and it stuck.)

The kicking kid slunk up behind them with a mischievous smile. I don’t typically discipline other people’s children, so I just said to the group, “No kicking. None of you.”

And they ran off.

A little while later, I glanced over at the kids. It was much darker and harder to see, but it looked like our son was getting kicked again. A lot. And he was.

By all accounts, that same kid just went crazy, kicking him for no reason anyone could give. We figured that the best bet was to separate the fight, remove ourselves (all of us) from the situation and head back to our room. The parents of the other kid were handling him; it sounded like this wasn’t the first time this had happened, and I felt for them.

Lefty had a bruise and cuts on his leg, scratches on his face, a cut lip, and a bruised ego.

The worst part, he noted, was that the two of them would be in kids’ club together the next day. He felt like he couldn’t go.

We assured him that we would figure something out, and we all went to bed.

The next morning, we told him that he didn’t have to go to kids’ club. Everyone had seen what happened and I’m sure we could figure out a way for him to ride the horses outside kids’ club.

But he loved the time playing with his other friends there. He didn’t want to give that up just because of this one kid and this one episode.

He thought about it over breakfast and decided that he wanted to attend the kids’ club after all, if his father and I could talk with one of the counselors.

Of course, we did. She had seen the altercation, so we simply reminded her of what happened the night before and asked if they could help to manage the dynamic. And though Lefty was still a little hesitant, he was also still determined not to miss a minute of fun, so he walked into the kids’ club with his favorite counselor and pushed through any discomfort.

He had a fabulous day. And by two days later, the boys were actually friends.

I hope to remember that when something is really hard. Do I want to give up the other things that I really enjoy in order to avoid what makes me uncomfortable? When I am in a lot of discomfort, do I want to give up on the fun things in life? Just like we talked with his favorite counselor, I may need some help laying the groundwork, but maybe from there, I could get going again?

On our next-to-last day, Lefty was riding a new horse, who bucked and threw him to the ground. He rapidly crawled away, determined that he was okay and got back on the horse.

This is unusual there – they don’t aim for the guests to get bucked. As a result, he got a strong reputation around the ranch as the kid who got bucked and got back on the horse. One of the cowboys loaned him chaps for his next ride, which made him feel like a real cowboy, and they gave him a lasso of his own to take home.

They signed his cast with what is now my new motto:

Cowboy Up cast

Cactus Flower

As you might expect, I think a lot about length of life, quality of life, and our unique (or maybe not-so-unique) life purpose.

On our recent desert vacation at a dude ranch, we saw this cactus flower in bloom.

Cactus Flower

Apparently, it blooms for just one day. But what a magnificent bloom.

I was rooting for it to open again on day 2, though very grateful that I got to see it when it did flower.

This, of course, makes me think about those of us who have thorny lives yet still bloom. And those among us whose bloom is far too brief, yet still beautiful, and how lucky we are to witness their bloom.

Change in Plans

Normally, I get my CT scans done at Dana Farber, but today’s scan was scheduled at a suburban location of Brigham and Women’s Hospital. I was to arrive at 8:30 a.m.

As scan locations go, it was actually perfect. It was close to my son’s school, so I could drop him off with a comfortable amount of time arrive for the scan prep. The building was easy to find and had ample parking. Walking in, the lobby was bright, the signs were clear, the halls were uncrowded.

When I entered the waiting area for the scan room, one other patient was calmly waiting in a seat. They had two people available for check-in. Both chatted in a friendly, welcoming way.

I decided that I would ALWAYS come here. Boston’s normally packed waiting room was filled with frenzy and anxiety. This place was calm and the air felt clean.

I filled out the form they handed to me….it was a different form than the one in Boston, but the questions were similar enough. One stood out, though: Are your veins difficult to access?

Since mine are, I really appreciated that question. To have any hope of finding a vein, I needed to be well-hydrated, which I was not. My veins roll, so the needle has trouble going in and they need to fish or re-stick. If and when they do get in, the valves are close together, so they typically don’t get a return and need to try again. All this results in huge blood bubbles under my skin and black and blue on top of my skin that doesn’t heal for a week or me.

I used to be polite and say okay. I didn’t want to hurt their feelings, and I wanted to be open to the chance that it might work. But they always gave up and said I needed an IV nurse, and I always arrived home with bruises. So now I know.

I told the nice nurse that I needed to use my port. She pointed to a vein on the back of my hand that looked good, but I know that vein is just a tease – it looks attainable but then rejects the stick as soon as they jab me.

No. I can come back another time.

She left and returned 10 minutes later. She said that she checked the schedules at all the locations where they have an IV nurse and they are full.

I can come another day.

They found an appointment for me at 4 p.m. today in Boston and verified that an IV nurse would still be there. So, I returned home to eat before I have to fast again, write this little note to you to ask you to continue to send good energy this way, and then will prepare to arrive in Boston at 2:30 (to allow time to do the port access and drink the drink).

I’m actually pretty calm about all this – the place felt too good to be true! It’s a bummer to lose this whole day to the scan, but that is the way it is going to go today. The primary bummer is that I repeatedly assured my son that I would pick him up from school, which I can no longer do. One by one, in his world, I am becoming the Queen of Broken Promises and Disappointments.

Thanks so much for your support. I hope the logistics of your day are much smoother, or, if there is a glitch, it is for the better!

Love,
Marie