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

 

 

 

 

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

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.

Changing habits

Thank you for all your prayers and good wishes. As we are all adjusting to this new regimen, it helps so very much.

The first time I received this new chemotherapy, I had a Benadryl hangover the next day. So for round two, we reduced the Benadryl, and I got a smaller hangover. The next time, which was about two weeks ago, we decreased the Benadryl even more, and, instead of a Benadryl hangover, I had huge, swollen, watery eyes the next two days. So we are still adjusting.

I find that I am adjusting in other ways as well. Over the years, I have been on two previous chemos  (FOLFOX and FOLFIRI), both of which left me exhausted. One minute, I would feel fine, and the next just hit a wall; as time went on, my periods of good energy became briefer. After years of this, I stayed home as much as possible and only made plans that could be cancelled.

On this new chemo, I have more energy. But old habits die hard: I continued to stay close to home and do very little. Noticing this habit, I decided to push myself a little more.

I’m thrilled that we were able to travel to Maine and visit friends. My husband was a huge support, and our friends (who are more like family) took great care of me and understood where I might be cautious and where I might want to push myself a little.

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Playing on the beach in Maine

On another day, I took our ten-year-old son and his two friends rock climbing, out to lunch and then swimming. I was a little nervous, committing to a full day of taking care of three boys, but I told myself that I could always take them home if I got tired. It helped that they are polite and well-behaved kids, and I checked in with myself during the day to see how my body felt. I was thrilled that we could do this! My husband went on a driving adventure and when he returned, I was actually able to actively listen to his experience without being distracted by some health need! I didn’t realize how I missed that.

We went as a family to the St. Anthony street festival, walking among the vendors and crowds on the city streets in the summer sun. This was a big risk – no convenient bathrooms, walking the whole time we were there, being in a crowd. But my husband was there and I knew that he would help me if I needed it. But I made it through!

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Eating our way through the St. Anthony Festival

And, all by myself, I took one of the boys exploring Faneuil Hall Marketplace in Boston. This was probably my biggest leap. I would be on my own and responsible for a child, with no convenient bathrooms (they are my little safety net!), and walking much of the time. Our schedule was not set. I worried about driving if I didn’t feel well, but then realized we could Uber back and forth. I decided to try it.

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Quincy Market and Faneuil Hall are side-by-side

Faneuil Hall Marketplace can be imagined as a large outdoor shopping mall. Salespeople stood outside their storefronts in the beautiful weather, chatting with passersby and handing out samples.

As we passed a make-up store, a young man stopped us to give a sample. He gave us a cheery greeting, then took one look at me, gasped audibly and said, “Oh  – your FACE!”

I had momentarily forgotten about my face. The current chemo drug often causes acne – one doctor described it as a rash and another called it a disfiguring skin condition, so you can imagine the range. For me, the “rash” is always present but changes daily. On this particular day, the skin on my face was a mix of red bumps, puss-filled bumps, and scabs of blood that I couldn’t get rid of – bleeding just happened whenever it happened and dried blood was on my nose, cheeks and forehead.

Yes, my face was a mess.

I anticipated that, at some point, I would get a comment from a stranger, and I planned to say, ‘It’s a side effect of some medication I am on.”

But instead I said, “It is a side effect of the chemotherapy I am on.”

I watched the statement sink in.

“Oh, the stress,” he nodded, as if he understood. “The stress must cause this.”

I felt like he was about to recommend a product, and I hated that he thought that my stress level was so high that it would cause this. (Okay, maybe it is, but still…) I tried to be educational, though I suspect that my tone sounded slightly defensive or even condescending, as I answered, “No, the chemotherapy attacks the cancer and, when it is working, it causes my skin to do this. It is the medicine itself, not the stress.”

His eyes got huge and I realized that he really meant well, but I would do us all a favor if we just moved on. So my son and I walked away and enjoyed the rest of our day.

This made me realize how rarely I am out in public. It felt good to be out, to spend time with the kids and do normal things, and to not drop from exhaustion or pain. In fact, I appreciated that I had enough energy to deal with his comment and find it only mildly annoying, and not energy-draining. And building new habits also builds my energy.

Thank you for all your support that enables this to be. It really helps us to have a better life. It’s the little things!

I hope that you are able to spend time doing things that give you energy, and that any inconveniences are reminders of the power you have to deal with them!

Love and blessings,

Marie

As life continues…

Thank you for your prayers and positive thoughts. Two weeks ago, when I went for chemo…

  1. My white cell count was smack dab in the normal range. Yay!!!
  2. They lowered the dose of both the Ativan and Benadryl, which gave me less of a hangover the next day and
  3. The chemo itself went well.

So, all good, and I don’t take it for granted. Thank you.

During these past two weeks, I’ve had much less pain and far fewer instances of instantaneous drop-dead exhaustion. Still, I live as though I might return to all that. Possibly because my life has been like that for so long, I am in the habit of living that way. I continue to carefully allocate my energy, not exerting myself too much (read: at all). When I do have abdominal pain, I stop and wait and see if it is simply passing or planning to linger. Mostly, it passes! But again, I don’t take it for granted.

My life might also continue to feel the same because so much of what we do is part of the flow of our lives from day to day. For example, I have always loved to cook. But because I haven’t been able to reliably cook, I have fallen out of the rhythm of cooking. Now, when I want to cook something, it feels like a big project. It is the same with other aspects of life, like riding bikes with the kids or doing projects around the house. Anything I do takes a lot of start up energy. But I’m working on that!

The kids and my husband are chugging along with our summer plans and I’m grateful when friends draw me out to do something new and different, or even to just connect. I hope you are enjoying the season where you are.

I head back into chemo on Tuesday, August 16 and appreciate any prayers and positive thoughts you can send my way for a safe and effective chemo session. I truly appreciate your support.

Love and blessings,
Marie

Make that Door #2…

It has been wonderful to have this week off chemo. My energy is picking up, and I’m using some of the time to prepare for the new chemotherapy. Since I learned that a possible side effect is a rash on my head that may require a special shampoo, I, of course, worried HOW WOULD I COLOR MY HAIR???

Thankfully, the salon had an opening and I zipped over there to get it colored today. The mixture had been sitting on my hair for the allotted time and my hair stylist was just about to rinse it off when I got a call from an “Unknown” number. Had to be the doctor.

And indeed it was. My oncologist wanted to let me know that my urine protein level was too high to qualify for the clinical trial. He reassured me that that number doesn’t mean anything bad for my overall health, and as far as cancer treatment goes, Plan B (Door #2)  was essentially the same as one possible path of the clinical trial. So thankfully it wasn’t devastating news.

My doctor is a mensch and made it clear that he would take the time I needed to discuss this with him. And I didn’t want to cut him off, but my hairdresser was ready to rinse out my hair dye and tapping his last season Pradas. (Okay, he doesn’t wear Pradas and if he did, they wouldn’t be LAST season – but I just love the movie Legally Blonde and couldn’t resist.)

I finally thanked my doctor and told him that I had hair coloring to be rinsed out. Priorities. He just laughed and said, “Can’t wait to see your hair on Tuesday.”

So, we go with the new plan on Tuesday. In the meantime, I have fresh color and a short cut!

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.

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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:

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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