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.

And the story continues…

If you are here looking for the bottom line, scroll to the end of this post.

He will have no fear of bad news; his heart is steadfast, trusting in the Lord.
Psalm 112:7

On Tuesday, I went in for chemo. A friend generously volunteered to accompany me for the whole shebang, and because I had a CT scan in the wee hours of Monday morning, my husband joined for the appointment with the oncologist so that they could view and discuss the scan. He’s amazing.

Backing up to the start of the day…

My friend and I arrived at Dana Farber. My port was accessed (and I didn’t vomit – yay!). I got weighed (holding steady above 100 pounds – yay!) and blood pressure taken (normal), plus temperature and oxygen. All normal. (And no vomiting.)

And then we saw my oncologist. He was a bit more serious than usual, but I just thought he was busy.

Turns out, there is tumor, not just pressing on my bladder, but pressing on my ureters. This puts me in danger of kidney problems. I didn’t know how my body is designed, so will explain here in case it helps you, too. Kidneys are connected to ureters, which empty into the bladder. The bladder empties via the urethra, and that’s about it. Simple design.

I think of the ureters as tubes, and the stents as straws to help hold them open so the kidneys can drain properly. No idea if this is accurate, but the image works for me.

Anyway, kidney news not ideal, but we’ve had bad news before and I figure, if there is a fix, we can deal with it. Mostly I hated that the ED resident from the night before was right, though I was grateful for his persistence.

But then, the doctor continued.

“If they can’t put in the stents by going through the urethra, then they need to do it by going through the kidney. This is a surgical procedure and means that you will have a bag for about eight weeks. And if they can’t do it at all, then you will have a permanent bag.”

WHAT???? Here is where my insides started spinning. Many years ago, I got a permanent colostomy bag. I feel like I dealt with that pretty well. In fact, I would take the bag over tumors any day.

But TWO bags??? This was too much. And I have lost so many body parts already. At what point do you lose so many that you are no longer a person?

I tried to stay focused on the moment, but when I returned my psyche to the actual moment, here is what I heard:

“And your tumors have grown. It isn’t clear, but there may be a new one…It’s hard to tell fully by this scan. And there is a tumor in the bladder. Maybe it is blood clot.”

My husband and doctor conferred on tumor vs blood clot. I was trying to push back the thought of another bag and deal with the fact that, even though I felt great, my tumors look bigger.

Ugh ugh ugh. If the tumors are bigger, then this chemo isn’t working. And if this chemo isn’t working, I need to go to FOLFOX, which I’ve done before and HATE from every angle you can hate a chemotherapy.

I found my voice and asked, “Can you check my CEA?” My CEA is a tumor marker that has, for years, been a reliable marker of growth. If it is bigger, then my tumors are bigger. If it is smaller, then my tumors are smaller.

He looked it up. “Before changing chemos, it was 800 something. Two weeks ago, it was 400 something.”  (He gave me the exact numbers. I just don’t remember them.)

Well, that was some good news that I could hang onto. But the scan. That freaking scan kept entering my mind. And the bag.

Well, no chemo anyway until we get the kidney situation under control. Which made me nervous too. No chemo means that nothing is fighting these tumors on my behalf.

Next up: See the urologist.

The end of August is not a great time to need a specialist. Everyone is on vacation. I know this because I have had more than one surgery and more than one emergency in August. Right now, the preferred urologists were on vacation, except for one who wasn’t leaving until Saturday!

He and my oncologist had communicated at 11:30 the night before. He was not in clinic that day but agreed to perform a test to see if they could possibly do the stents “the easier way” through the urethra.

Before I see the urologist, I need to take two Cipro pills, to prevent any infection that the test might cause. No problem you may think. Except that the pills are administered by my nurse, and the sight of her makes me vomit. If I hold back, there is a risk that I will vomit later. But I can’t can’t CAN’T vomit up those pills and get this procedure. If I vomit and get it out of the way, I will not be able to swallow the pills.

I avoid looking at my nurse, swallow the pills, and we run out of the office.

We sat for awhile in this spiritual rock garden place where my friend distracted me with witty conversation and where the air felt cleaner and had no hospital smells.

About an hour later, off we went to the urologists office. The check-in woman put me at ease. She gave me some forms to fill out. I couldn’t write. I was shaking. Okay, maybe I wasn’t so at ease.

My husband filled out the forms and we met with the urologist, who again prepared me for the possibility of a bag. I was not encouraged.

BUT, he did the procedure and saw that he could at least access what he needed to access to insert the stents “the easier way.” No guarantees, but it was a good first step, so I hung my hopes on that.

Everyone agrees that this needs to be done as soon as possible, and I’m on board with that. He was able to schedule the procedure for Friday, before he left for vacation on Saturday.

This day had done me in. We went out for dinner to a really nice restaurant and I ordered a glass of wine. I haven’t had a drink in over 10 years, and I suspect that someone with a kidney issue shouldn’t reach for a drink. So this was big for me. I got tipsy pretty quickly, and then mildly drunk. I was singing and dancing and the kids thought it was hilarious. And while I don’t like to feel out of control, I felt out of control all day. This kind of “out of control” felt much better.

The Bottom Line:

Now that it is a new day, I’m trying to focus on the good:

  • I was able to see a top urologist, quickly, and he will put the stents in on Friday morning. I’ve had enough surgeries and emergencies at the end of August to know that this is no small thing – most top doctors are on vacation. So for his ability to help me, I am grateful.
  • There is a tumor in my bladder. It got there by growing through the bladder wall, so they can’t remove it without leaving a hole in the wall of my bladder (which would cause more problems). That means that, for as long as that thing is there, bleeding will be part of my life.
  • On the CT scan, it looks like my tumors have grown. BUT…My CEA (tumor marker) is less than half than what it was before this chemo. I don’t want to change chemo – my energy is good on this one. They agreed to continue with the current chemo for the time being and we will test again.
  • I am able to take one step at a time.

Wow. What a week. So whatever is in your day, feel free to say, “At least I’m not going through THAT.” And I do hope that your problems are totally manageable. And will pass.

Thank you so much for your prayers and support. While I was questioning whether God was off busy with someone else that day, I appreciate knowing that you are carrying me through all this and being His representatives on earth. Thank you.

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

The Power of Presence

When I first started this chemo gig, my infusion space at the hospital looked like party central. I invited friends and we gathered into the cramped space. We sometimes had food, we always had laughter, and I eventually ended up looking drugged because one of the anti-nausea meds made my facial muscles droopy and me unable to speak clearly.

Over time, the scene changed. We finally figured out that we could lower the dose of that face-altering drug. I stopped taking the steroids (which made me a crazy screaming person who couldn’t sleep) and replaced them with IV Ativan, which alleviated my tendency to vomit but put me to sleep.

Though we cut back on the party vibe, I was lucky enough to still have a friend to join me each time. They would support me through the port access and blood draw, and sit through the meeting with my doctor. After that, my nurse would administer the Ativan, which would shortly knock me out.

I always suggested that my friend leave right at that point. Why bother to stay only to watch me sleep? And what if I drooled or did other embarrassing or gross things – I wanted to keep my friends and some shred of dignity.

Recently though, an old, dear friend joined me for chemo for the first time. In her bag, she brought a shawl in case I got chilled, and a few other things. I can’t remember exactly what they were, only that every time I needed something, she had it in that bag. I was really touched.

We reached the point in the process where the nurse gave me Ativan, so I thanked my friend and told her that she could feel free to leave.

“I’m staying,” she said simply.

“Did you bring a book?” Her bag was shapeless and didn’t seem to hold one.

“No,” she replied. “I am going to sit with you.”

“I’ll be asleep,” was my weak but best response.

I didn’t have kind of time or energy to dissuade her, so that was that. I thought her idea was a little crazy but I was drugged and in no position to win with logic. And I love her whether or not she has a crazy idea.

So we moved to a room with a bed (for me) and a chair (for her), and I was out.

Some time later, the Ativan wore off and I opened my eyes. The first thing I saw was my friend.

At that moment, I was feeling nauseous and in pain, but my overwhelming feeling was the relief of, “I am not alone.”

I suddenly remembered: I do typically wake during chemo. And when I do, I grope around for the nurse call button. Eventually a nurse arrives who looks me over and asks what I want. I stammer that I need my nurse, she says that she will get her, and leaves.

Everyone is very kind. But they are strangers, and it takes effort to interact with them. After each chemo session, I block it from my mind as part of the whole event.

But today, I remembered, possibly because this experience was such a contrast. And not only did I feel so supported, but my friend looked at me and knew what I needed.

Firmly, she said, “I will get your nurse.”

No call button. No unfamiliar intermediate nurse. My friend left and I knew she would return with my nurse AND the medicine I needed. And she did.

She stayed with me until my chemo session was complete. Each time, when I finish, my husband arrives, and he and the nurse help me to put on my shoes and get me into a wheelchair. I never remember anything from there. But this time, I remembered that my friend was still with me. And that made all the difference in the world.

 

You are always welcome

Thank you for hanging in there with me. I’m still recovering but getting a bit better every day! Just getting out of bed, showered and dressed is an accomplishment. I spend my days lounging around the house between naps. Being in the house for weeks can feel isolating. It is great to know that I’m not really alone.

During one of my lounging sessions, I caught the movie Moonstruck on TV. My favorite part is the last 20 minutes or so. If you haven’t seen it – SPOILER ALERT.

The movie centers around an Italian family. This final scene takes place first thing in the morning. The mother is in the kitchen cooking oatmeal and, one by one, people arrive – either from upstairs or through the front door. First the daughter (Loretta, played by Cher), then the brother of Loretta’s fiancé, followed by Loretta’s aunt and uncle, Loretta’s father, his father, and, finally, Loretta’s fiancé, each joining the crowd in the kitchen, until there are more people than chairs assembled around the table.

When I first watched this movie in the 1980’s, a coworker from a British family told me that she loved the movie but the ending was unrealistic: People don’t just show up at your doorstep! And why would the mom make so much oatmeal?

But for me, growing up in an Italian family, that scene was the most realistic scene in the movie. Friends and family are WELCOME to show up at your door, anytime. And of course there is always food on the stove, plenty for everyone.

As I watched this final scene last weekend, I realized how incredibly grateful I am to everyone who just shows up. Sometimes it is at my door, which helps to alleviate isolation and adds color and dimension to my day. Sometimes it is online, or through meals, or cards, or a myriad of other ways. You are so very welcome. And while I don’t always have something on the stove, I am happy to share whatever I have. Again, you are always welcome.

Love,
Marie

Choosing life

From Dt 30:19-20

I have set before you life and death,
the blessing and the curse.

Choose life, then,
that you and your descendants may live, by loving the LORD, your God,
heeding his voice, and holding fast to him.

For that will mean life for you,
a long life for you to live on the land that the LORD swore
he would give to your fathers Abraham, Isaac and Jacob.”

Many of you are carrying crazy big burdens, yet you reach out to support me. Thank you. I’m not sure how you do it, dealing with your own stuff and still supporting me in mine.

When my attitude and outlook toward life remain good, that helps me with any other hassles. I typically wake up expecting good things to happen, and assume that we could surely handle the occasional not-so-ideal.

But when my attitude tanks, like now, I become dazed and confused and feel like I am in a hole that I can’t get out of. Over the past few weeks, we’ve had one surprise hit after another, leaving me constantly on the lookout for the other shoe to drop.

I don’t like living that way. I prefer to anticipate wonderful surprises around every corner. It’s far more energizing for me. But I can’t seem to will myself into that place.

So here I sit, waiting for the next mini-crisis, and I know I am not the first to be in this position.

Luckily, I have supportive friends. Some remind me that these events are likely part of a cycle that will run its course, some share their similar experiences and learnings, and others simply let me know they are there or even make me laugh. All of that helps.

In addition, I’ve had the honor of being close to friends when they are going through a major downturn, such as a cancer diagnosis, or a spouse suddenly (or not so suddenly) die, or a child who is going through trying times.

It doesn’t feel like an honor at the time. Upon hearing that news, my first reaction is generally shock and disbelief. As the news settles in, the sadness is overwhelming and I want to believe that it is not true at all, or that we could make it simply go away. And of course, the Type A in me wants to DO something, though I never know what.

Upon reflection, to be close to someone during that time – to be invited in when someone is in that open, difficult, heartrending place – is truly an honor.

During my own difficult times, I gain inspiration and hope as I reflect on the actions of these friends. I recently noticed that most, if not all of them, have something in common: At every turn, they choose life. At every moment where there is a decision to be made, they choose the most life-affirming one for them, a small action that, step by step, brings them back to life.

Examples include exercising, taking a vacation, practicing their art, returning to work and a regular schedule. Not that these specific actions are the “answer.” It is more that that person chose each action because it was the very thing in that moment that helped to energize and breathe life back into them. They made one life-affirming decision at a time.

So thank you for letting me in. Thank you for your support. Thank you for your example of your life. Though I get tired and discouraged at times, this too will pass. And in the meantime, at each decision point during the day, I will do my best to follow your example and make the life-giving choice.

Blessings and light,
Marie

Full reading below:

Reading 1 Dt 30:15-20

Moses said to the people:

“Today I have set before you
life and prosperity, death and doom.

If you obey the commandments of the LORD, your God,
which I enjoin on you today,
loving him, and walking in his ways,
and keeping his commandments, statutes and decrees,
you will live and grow numerous,
and the LORD, your God,
will bless you in the land you are entering to occupy.

If, however, you turn away your hearts and will not listen,
but are led astray and adore and serve other gods,
I tell you now that you will certainly perish;
you will not have a long life
on the land that you are crossing the Jordan to enter and occupy.

I call heaven and earth today to witness against you:

I have set before you life and death,
the blessing and the curse.

Choose life, then,
that you and your descendants may live, by loving the LORD, your God,
heeding his voice, and holding fast to him.

For that will mean life for you,
a long life for you to live on the land that the LORD swore
he would give to your fathers Abraham, Isaac and Jacob.”