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.

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

Divine guidance

When I started this blog, I was pretty nervous. I had been having all these spiritual experiences and I even “heard” that I should start a new blog and what the name and focus should be. Would people think I was weird? Way out there? Crazy?

But at some point it became scarier NOT to do it, so I did it.

After I started writing about my experiences, many people showed up telling me – confidentially – about similar experiences in their lives. I felt honored that they would share those with me, plus it made me feel a little less nutty.

As for me, I began to trust that when I got those messages, and if I followed them, they would take me someplace good. I began to rely on them.

I haven’t heard any messages recently. I kind of miss them. Plus, now that I have relied on them, it is a little scary to do things without them. There is a certain security to knowing that someone is guiding me, that they have my back, that it isn’t just me on my own out there.

As I began to realize this, a few friends appeared to tell me about the messages they recently received and the miraculous happenings in their lives, how they are connecting with something bigger than we are. I am again honored that they would share this with me. And it helped me to remember that something doesn’t have to happen to me personally for it to exist. And maybe sometime I’ll get those cool, instructive messages again. Or something else!

In the meantime, I like that these connections exist for my friends and family, and I can bask in that. And going into my CT scan tomorrow, I feel like someone has my back, even if I’m not hearing them.

I hope your guidance, wherever it comes from, takes you someplace that makes you smile.

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.”

 

Gifts of Spirit

On a recent Sunday, I was moved by this reading:

1 COR 12:4-11

Brothers and sisters:

There are different kinds of spiritual gifts but the same Spirit;
there are different forms of service but the same Lord;
there are different workings but the same God
who produces all of them in everyone.

To each individual the manifestation of the Spirit
is given for some benefit.

To one is given through the Spirit the expression of wisdom;
to another, the expression of knowledge according to the same Spirit;
to another, faith by the same Spirit;
to another, gifts of healing by the one Spirit;
to another, mighty deeds;
to another, prophecy;
to another, discernment of spirits;
to another, varieties of tongues;
to another, interpretation of tongues.

But one and the same Spirit produces all of these,
distributing them individually to each person as he wishes.

When I learned that I needed to do chemotherapy, people who have traveled this road told me that I would need help. What kind of help? No one could say.

So in my fantasy world, I imagined teachers who were super compassionate with our children, or specific friends who would step in to provide logistical or emotional support.

Like most (if not all) of my fantasies, it bore no relation to reality. Teachers did their best but were not compassionate in the super-human way that I envisioned. The friends who I thought would be my rock either disappeared or needed more support than I did. Sometimes I felt disappointed or let down that people were not acting according to my expectations.

Fortunately, I was so ripped apart that I could not possibly direct anything in my life toward the way I thought it “should be.” As a result, I was wide open to anything. And people, amazingly, stepped into those openings in our lives in ways I would never have envisioned or directed on my own.

Friends, who I never knew could cook, crafted amazing meals and drove (sometimes long distances) to deliver them. Others, who lead completely booked lives, offered to drive me to appointments or chauffeur my children hither and yon. Old friends call, text, email or show up at the just the right time, and continue to include us in social invitations. Although I felt like a lost cause and not worthy of new friendships, some of my most treasured friends today are the ones who stepped into our lives after my diagnosis, who even visit me at home, encourage me to try new things, and lift me with their energy. The fact that they befriended someone who thought she was on her way out the door of this life constantly reminds me that life starts new every single minute.

People have done things for us that I never imagined we would need or want, but have made our lives infinitely better and our foundation more stable. They helped us to grow.

So when I read this part of Corinthians, all those people flooded into my heart. At some point long ago, I would have assumed that one action would be more helpful or important than another. But as time progressed, each action of our friends and family felt like the perfect workings of God through that individual. Gifts all, given and openly shared. Each unique, and each filled with Spirit.

With gratitude and love,
Marie

 

 

 

The reverberation of my time with John of God

Thank you for all your prayers and support. I am fully convinced that there are greater powers at work, and I appreciate that you tap into that to help me. Thank you.

I took last week off chemo to go see John of God at Omega in Rhinebeck, NY. Because I took a week off early in September, I was a little nervous about taking this week off as well. But I also know that when I see John of God and the entities who work with him, I experience positive and unexpected changes.

So off I went.

I arrived at Omega with specific intentions in mind so that I could be clear during the many hours of meditation and prayer.

Rather than describe the experience, I’ll share some of the outcomes.

But first, I will share a little background. The first time I went to see John of God (in Brazil), my primary intention was to be healed of tumors. (My summary of that trip is here. If you want to read more about it, I have more details starting on July 30 in that same blog.)  When I returned home, friends asked if I was upset that I wasn’t “healed.” But I felt great. Compared to a few weeks before, I was softer, happier, less judgmental. I felt like layers of yucky feelings had been removed from me. Maybe I still had the tumors, but I also had my life back. That was worth even more.

Because of that experience, I bring my own intentions but trust that the best things will happen.

And yes, one of my intentions was to remove the tumors, and specifically, the tumor in my belly button.

Here is what I experienced:

  • On Tuesday afternoon, I had the start of a bowel obstruction. I could barely move. By now, I know the gig for these: I’m up all night, in pain and vomiting, until everything frees itself. But this time, I lay in bed (still feeling intense waves of pain) and FELL ASLEEP. That has NEVER happened before. When I woke in the morning, the pain was gone and the obstruction was freed. Immense gratitude!
  • On Wednesday, I felt the belly button tumor. Doing that gives me the heebie-jeebies, but I need to know if there is any change. It wasn’t there. In place of that small, hard ball was soft mushy skin. Hmm. I checked again on Thursday. And Friday, and Saturday. I’m still not sure what to make of that.
  • The opening in my belly button is barely noticeable.
  • When I skip a week of chemo, I am usually in more pain that second week and my energy level is low. But right now, I’m actually in less pain that I have been in years. I can lift grocery bags and move the dryer. I had the energy to attend a religious service, go to the grocery store, and cook two full meals, all in a good mood!

Plus, one more fun event that happened after I arrived home, totally unrelated to health.

I bought these Birkenstocks, wore them once, and left them in the car.

Birkenstocks

Birkenstocks

Recently, I noticed there was only one on the floor of my car. I looked through the car and the house. I asked my husband and kids. No sign of it anywhere. I hate losing things, especially brand new things.

The shoe was missing long enough that I considered throwing away its mate, but I didn’t.

On Saturday, I drove one of our sons to his friend’s house. My husband usually does this, but I was feeling great and wanted to go. I had never been to the house and was driving slowly to find it when our son said, “His house is right there, the one with the fence that has your shoe on it.”

He was very matter-of-fact, like this happens every day. Ha ha, I thought, funny.

When we walked to the house, I examined the shoe. It was the same style and color, the right size, and even the right foot. Hmm, maybe I’ll keep it, I thought. I can use it. It was even brand new. It felt just like mine.

Once in the house, I asked my friend about the shoe. She had found it on the sidewalk in front of her house. They considered throwing it away, but it was brand new, so thought they would put it on the fence. Maybe whoever lost it would come looking for it. It had been on that fence long enough that they again considered throwing it away. But they didn’t.

I was just thrilled.

But I had never been to the house. How did it get there? We figured that my husband drove my car there, and it somehow fell onto the sideway. Possible.

I’m just giddy that all the pieces fell into place and I have my pair of shoes together again! (Now I just need the warm weather to return.)

On another note (literally), I attended a beautiful Humanistic Judaism service at Kahal B’raira. I wanted to share this song with you, especially the words in bold, because I so appreciate the way you share the source of strength deep within you.

Song: Makom hako’ach

            Makom hako’ach b’tocheinu,
            M’korot ha-b’racha m’chevroteinu.

           May the source of strength
           That dwells so deep within us,
           Help us find the courage to make our lives a blessing,
           And let us say: shalom.

            Makom hako’ah b’tocheinu,
            M’korot ha-b’rakha m’chevroteinu.

           Bless those in need of healing with refuah sh’leima
           The renewal of body, the renewal of spirit,
           And let us say: shalom.

Debbie Friedman
Adapted by J. Falick, M. Jerris , and A. Chalom

Blessings and love,
Marie

A Walk Down Memory Lane

On September 18, 2015, Carnegie Mellon University posted (on Facebook) that 8 years ago, Randy Pausch delivered his famous Last Lecture.

My memory does not reliably record dates. I have a little rhyme to help me remember the birthdates of our sons; I definitely don’t remember any dates connected with any of my cancer news.

But my initial diagnosis is forever linked to Randy’s talk.

That September, our four-year-old had just started pre-K at a new school. We were about to move into a new home. And, on a Monday or Tuesday sometime during that month, I had a colonoscopy. The doctor found something that looked like cancer but we would have to wait for pathology to confirm. He assured me that they got a clear margin, though it was thin. “Clear margin” was encouraging. I had had brushes with cancer in the past, but we always caught it early (funny moles, DCIS), so I wasn’t particularly anxious as we waited for the results.

On Thursday of that week, my friend Julie called to tell me that there was an article in the Wall Street Journal about a talk given by Randy Pausch. She recalled that Randy and I knew each other from our days at CMU. We were no longer in contact, though I did hear through the grapevine about his diagnosis of pancreatic cancer.

I read the WSJ article, mentally noting that it was written by Jeff Zaslow, one of my favorite WSJ reporters (who coincidentally also graduated from Carnegie Mellon). The next day, Friday, in the very late afternoon, I decided to watch Randy’s hour-long lecture online. I figured that I would watch for 15 minutes and if I wasn’t drawn in, I would stop.

Of course, I was drawn in. I watched and watched and watched. I recognized so many aspects of the Randy I knew 20 years before – the way he laughed, how he moved his mouth when he made a joke, his style of jokes. I admired how he had grown into an incredible lecturer and how his values, still the same, became even stronger and more clear.

When I finished watching, I sat back in my chair and took a deep breath. Still sitting there a few moments later, basking in the after-effects of the lecture, our home phone rang.

It was the doctor calling to confirm that I had colorectal cancer.

“Thank you,” was my first response. He thought I didn’t understand him, so he repeated himself.

“I understand,” I assured him. “Thank you for calling to tell me, especially on a Friday night.”

“I’ve never had someone thank me for a cancer diagnosis. Are you okay?”

I tried to explain that I just watched this lecture but I didn’t say much about that before I started feeling silly, so I switched to, “I’m just glad you caught it.”

We talked a bit more – he recommended surgery because the margin was thin but we could discuss particulars next week – and then we hung up.

Shortly after that, the phone rang again. It was my primary care doctor.

“Dr. C told me that he talked with you. He is worried that you are in shock, because you kept thanking him. I wanted to check in.”

“I’m fine. I just watched this lecture….” I again started to explain and then I trailed off. It was Friday night and quite generous of these doctors to spend that time with me. I didn’t need to ramble on about something irrelevant to them.

“I’m fine. I’ll be okay. Thank you for calling.”

(She wrapped up by giving me her cell number and telling me that she was available all weekend if I wanted to talk. I totally love my PCP.)

Not only was Randy’s talk fabulous, but also, I happened to watch it at the perfect time for me. The way he handled his diagnosis and his life both sobered and inspired me. His Last Lecture created a mindset and space that provided a buffer where I could receive the news of my own diagnosis, which didn’t feel nearly as dire. In fact, I felt like I was in a state of grace.

Carnegie Mellon’s Facebook post reminded me that it has been eight years since this all occurred. I am grateful for and awed by the gift of that time.

At the many points when this path felt impossible, I would often think of Julie’s prompting, Randy’s talk and the phone call that immediately followed. These serendipitous events marked the beginning of feeling like I was being cared for and carried. They helped me to trust that the support I needed would come. Sometimes from surprising and unexpected places, but it would come. When I remember the connection between the events of that week in September, I am reminded that I can trust that.

I know that many of us have been handed enormous burdens. I hope that you can feel tangible ways in which you are being cared for and carried, that serendipitous events make your burden more bearable, and that you feel the love all around and through you.

Blessings and light,
Marie

A bend in the road, or a new road?

As my friend Shira used to say, “I’m not sure if this is a bend in the road, or an entirely new road.” Either way, I’m along for the ride.

These two weeks were unbelievably difficult. It was almost a week after chemo before I got out of bed and downstairs. And even then, I didn’t travel further than our back patio and just plopped myself there.

In addition to the pain of my belly button slowly ripping open, I couldn’t get clear answers on how to deal with it. I had other pain that only a bath could resolve, so I was bathing every two hours, even through the night. The abdominal tumors hurt like crazy.

And on Friday night, I had a bowel obstruction. Normally, those are painful. This was my worst yet, and left me screaming in pain.

In the midst of the intense pain, I noticed that I was screaming two things. One was, “I can’t do this anymore.”

I found my limit. I never labeled my pain a 10 because I figured that it could get worse. This was an 11. I could not imagine enduring a worse pain than this. I wasn’t even sure I could endure this.

The other thing I screamed was, “I can’t do this alone.”

And I can’t.

First and foremost, I have to acknowledge my husband, about whom I rarely write. He reliably takes care of his day job as well as taking care of the kids and me and the household. Each one of those is big in a regular life. He comes home from work, figures out a plan for dinner (on the days when someone hasn’t brought it), determines which child needs to do homework and who needs to get exercise or go to their after school sport, then helps get them both ready for bed and asleep. He makes sure that I am doing okay, have whatever it is I can eat that day, and runs to the store or pharmacy if I needs something. Beyond the logistics, we have the emotional complications for the kids, my often-intense daily needs (I do not suffer in silence), taking care of the medical side of my issues, and the random things like end-of-school events, a flat tire or the house internet going down. He doesn’t get a spare moment to himself. Without him, none of us would function. At all. He is carrying all of us every minute of the day.

Our family is grateful to the folks with whom we interact every single day, who understand what we are going through (HUGE for us, that understanding) and lighten the load in a million ways. When my son couldn’t find his gym shirt, someone kindly understood that I could not make it to the school lost and found. So they searched for me and, when they didn’t find it, they provided one for him. Huge. Friends take the boys for playdates, or show up with food or flowers or a fun story, or send an email or text at the perfect time, share their medical advice and experience….the list goes on. We are grateful for fabulous support at school, a fantastic close-knit neighborhood, family who show up when we need them without question and take over for a bit and make it look easy, and friends who are willing to go the extra mile.

Even with all this support, there are times when it seems like it is just me by myself, like Friday night when I was lying on our bathroom floor, sick beyond all belief, feeling like this has to be the end of the road and partly wishing that it was so that the suffering would be done. And from that rock bottom place, I pray for help and then am able to give thanks that I am not truly alone there, either. In those moments in the middle of the darkest night, I give thanks for my connection to God and to all of you.

If you sometimes feel alone with your problems, and even if you don’t feel like you have a relationship with any higher being, I hope you are able to tap into the connectivity of us all and draw some strength from that. In my experience, it doesn’t make the suffering go away, but it does shift my relationship to it somewhat to make me feel less alone, and I wish that for you. As well as an understanding friend.

Love and blessings,
Marie

Inspiration and support

Health Story Collaborative hosts cool events where patients of all kinds get to tell their stories. I spoke at one event, and afterward, I walked on air and could feel a change in the vibration of my body.

Following my magnificent experience, I was honored to host one of these discussions in my home for a woman named Liz who was diagnosed with ovarian cancer. I didn’t know Liz – she was recommended by Health Story Collaborative – but she and her friends had wonderful energy and sharing her story in that way was as powerful for her as mine was for me.

Though Liz and I had much in common (similar in age, children of the same age, attitudes toward life, cancer diagnosis….), we didn’t stay in touch. Life gets busy, we all have our routines, you have to prioritize your limited energy during treatments, and we each have plenty of friends we already don’t get to see as often as we would like.

This week, I actively wondered about Liz and how she was doing. I didn’t even remember her last name to try and find her email address in my list of contacts, and contacting Health Story Collaborative to find her felt like adding another thing on my list of things to do, so I didn’t follow through. Liz’s well-being remained an unanswered question.

In the meantime, here is how my chemo holiday has progressing.

First and foremost – I love not doing chemo! I love being free from tubes, I love not carrying vomit bags with me everywhere, and I love having a clearer mind. I love having more than two weeks each month when I can do things that one needs and wants to do in life (grocery shop, hair and dentist appointments, kids’ school events, etc.).

Occasionally, I think about my CT scan results. The doctors saw some fluid near the anastomosis (surgical connection of two parts of my intestines that aren’t normally connected). The fluid can be simply nothing or it could mean that the Avastin (which has been working so well for me) may be doing damage to the stitching there. If there is damage, it is inoperable, and a tear in that area would likely be fatal. And not instantly fatal – it would more likely involve a long hospital stay and decline. For the record, that is not my preferred way to die. So if that were the case, that would mean no more Avastin.

I generally don’t look ahead; I mostly assume we will handle whatever comes up when it arises. But when I think about this particular potential conversation with my doctor, I do remind myself that if Avastin is no longer an option, I am lucky to have other options when it comes to chemo drugs. There is another drug, Erbitux, that many friends have taken and one friend is currently taking with successful results. The most notable side effect is a major skin reaction. It looks like you have acne or a red rash all over your body, which is usually uncomfortable. Given how sensitive my skin is on a good day (for example, I have to watch what kind of Band-Aid I use, or which tape they use on my skin at the hospital), I fear that my skin will be especially sensitive to this drug. Besides that, it is unsightly. I kind of like not “looking” like a cancer patient.

Mostly, I try to stay focused on the present. Admittedly, that is easier to do when I am feeling well. The snow is gone and while it has been chilly, the sun is starting to shine, so that helps.

However, I’ve also had many days filled with pain that make it hard to move or even stand, and nights where the pain keeps me from sleeping. Strung back-to-back for over a week, these days feel endless and discouraging.

I realized that I rely on living my life from miracle to miracle and I wasn’t noticing anything miraculous popping up, so that was bringing me down as well.

During that time, I did what I could. I booked more acupuncture. Tom Tam loaned me this device to wear to help with my pain. (I was skeptical, but it truly helped enough to get me up and moving.) I scheduled regular bodywork appointments with a local guru. I resumed calls with my energy worker. I did a reiki session that enabled me to sleep. I read funny novels and watched comedy clips on YouTube. I reframed any negative thoughts that made their way into my psyche.

Absentmindedly deleting junk emails this week, I noticed one about a new drug approved by the FDA, ramucirumab (brand name Cyramza®)  targeted for stage 4 cancer patients. It works similarly to Erbitux but with different side effects. Ah, a potential option if I need it. Thank you God. I felt myself exhale.

Then, I went into Dana-Farber for a port flush. (They need to periodically access the port in my chest and flush it with saline to keep it clear and useful.)

I signed in and the woman behind the counter gave me the plastic bracelet with my name, birthdate, and medical ID number. I hate that bracelet and all that it stands for. The port flush went well and, immediately afterwards, I walked through the waiting room, straight to the trash can, and pulled the plastic bracelet off my wrist.

As I held it over the trash can, a woman stopped and said to me, “You might not….”

Immediately defensive thoughts went flying through my mind, such as, Don’t tell me that I might not want to throw this away. Don’t tell me that I might need this for discounted parking. I just want to be rid of this thing…

Thankfully, she couldn’t hear my thoughts, so she continued on, uninterrupted (as far as she knew), “…remember me. I did a talk at your house….”

OH MY GOSH. It was LIZ! I just LOVE it when questions are answered. I didn’t know where to start reconnecting with her – there were so many places to begin!

Well, we were both alive, which seems to be everyone’s first question about cancer patients. She looked good and energetic and still had the cynical edge that made me laugh.

She was back on chemo and today was a treatment day. We talked about parenting through treatments and taking care of ourselves and living with one foot on the path of “I will heal” and the other on the path of “What if I don’t.” We talked about Kripalu. We talked about Tong Ren and Tom Tam and, in that crowded waiting room, I lifted my shirt to show her the device he developed that helps me with pain. (You should know that lifting my shirt also exposes my colostomy bag, but that paled against my excitement of seeing her and sharing something that might help. Besides, in that room, people are dealing with issues larger than the horror of glimpsing someone else’s colostomy bag.)

Running into Liz at that place and time was like a Divine Intervention. She told me that she really needed to see me at that moment, and I couldn’t explain how lifted I was to see her. It helped to restore my faith in the connectedness and purpose of the universe. Her presence helped me to feel like God was listening to my questions and would provide the answers if I can just be patient.

We exchanged email addresses again and while I am not sure how we will stay in touch, I know that our hearts are connected enough to bring us together and inspire each other as  we move forward.

Thank you for always being there to inspire and support me. I appreciate your prayers as much if not even more during this break, as it can be scary and painful but also, bearable, with your friendship and support.

Blessings and love and miracles,
Marie