Starting new chemo on Tuesday

Well, last week was a little draining. A trip to the ER on Sunday, a day surgery on Thursday, and in between, the election.

But wait, there’s more! I start a new chemo on Tuesday (FOLFOX, for those familiar). Not my favorite chemo cocktail but here’s hoping that it works. I’ve had four weeks off chemo, which usually would be refreshing but this time was filled with hospital visits, so didn’t feel so much like a holiday. We begin again!

Thank you so much for your prayers and positive thoughts last week. I know it pulled me through. And thank you for your continued support.

Love and blessings,
Marie

Back to bag, and then chemo

Thank you for all your prayers and positive thoughts! The procedure on Friday went well. They were able to place the big girl double-J stent! They left one skinny tube hanging out of my back, just in case.

Good thing, because on Sunday morning, I again woke up with pain in my left kidney and a wet bandage. Back to the bag we go. Ugh. But the on-call doc reassured me that this isn’t unusual and I am likely still on my path to having just the stent, no tube.

So, I will have the bag until Wednesday and we will then try again without the bag.

In the meantime, I have chemo on Tuesday, so prayers and positive thoughts for an effective and easy session are much appreciated!

Thank you so very much.

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!

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

My own little prayer study and results

To clarify – I am not currently doing chemo. I am on a chemo holiday and would like to remain on a chemo holiday. To that end, the tumors need to shrink or stay stable.

So – the prayers I am regularly requesting from you are for the tumors to shrink or stay stable. Although I do a lot with my lifestyle to stay healthy, your prayers truly are my very best medicine right now.

My life experience convinces me of this. This week alone, within a 24-hour period, I got a message from

  • Tom sharing that his CEA (tumor marker) remains normal – woo hoo!
  • Deb rejoicing in her four- and possibly eight-week chemo holiday (I’m gunning for even more for her) AND
  • M amazed that her surgery AND recovery went better than the last time due to positive thoughts sent by friends. (I sent prayers along with positive thoughts – hope that was okay, my dear friend.)

All things for which we have specifically been praying. I LOVE it!

I will add one more to this list, although it requires sharing something that feels a bit personal. I have water from Lourdes and a few people suggested that I put it on the tumor sites and pray to Mary.

So, every morning, I do exactly that. Except, I only did that with one tumor site, the one that is between my liver and diaphragm.

During one of those prayers, I said something like, “I totally believe that you can take care of this, but it would be great to have a sign.”

At my last doctor appointment, he reviewed the CT scan with me and reported that two of the measurable tumors grew slightly. The other tumors they see but are too small to measure grew a bit as well. But the tumor between my liver and diaphragm, the one I have been praying over, was stable.

Yes, ONLY the tumor that I have been praying over is stable.

And yes, I then changed my approach to pray over ALL the tumors.

Like the prayers for Tom and Deb and M and me, I know that this works for you. Pray. Or send out positive thoughts regarding your life. Or tell me what you want me to pray for on your behalf, and I will do that.

Thank you, thank you, thank you for your continued prayers for my healing. I know they make a difference. My family and I are deeply grateful, as your prayers enable the life we have together.

Love and blessings,
Marie

P.S. You may be thinking, if everything has grown a little, why didn’t I jump back on chemo.

If you have been following this story for awhile, you know that one full year, and then another, revolved around chemo and surgery and other treatments. At some point, I switched it around. Chemo and treatments became part of my life, but, where I could help it, my life didn’t revolve around them, making all of us much happier.

It is summer and we have vacation plans and life needs to be lived. My doctor and I discussed several options, and we came to this conclusion together. I get tested again August and we will have another discussion then. So please keep on praying for tumor shrinkage or sending positive vibes if that is more your thing and giving thanks for the wonder that is life!

That ship has sailed?

Thank you for sharing the joys of this path as well as your help in navigating the bumps. Not surprisingly, my family and I have experienced unexpected changes, big and small.

Along the way, I’ve had a mastectomy, more abdominal surgeries than I can count, plus an ileostomy bag and later, a colostomy bag. I had a port surgically placed in my chest, then removed, then placed again. Chemo sessions meant three days of a needle sticking into the port in my chest, a tube running from that, and that tube connected to a machine and a bag of chemo.

My kids were only 1 and 4 when I started all this. Actually, if you start with the mastectomy, I had only one child who was two at the time. So for the younger one, this whole gig is a way of life.

After each of these surgeries, I was unable to lift the kids for the following couple of months. On my chemo days, they couldn’t cuddle with me for fear of disturbing or bumping the needle in my chest, much less run and jump on me or even tumble around. Given the frequency of these events, we got out of the habit of cuddling at all.

I don’t usually miss it or even think about it. We know that we love each other and life is what it is.

Last night, we joined a party at a friend’s house, hanging out in the backyard. As I sat watching all the trampoline jumping, the dogs running and the many conversations, every cell in my body suddenly craved for my nine-year-old to sit on my lap.

I can’t remember the last time he did that. And I can’t remember ever needing it more.

But, he is nine and we were in public and this was so not happening. I shifted my focused to the present and all the good around me.

Then, he appeared, stood in front of my chair, touched my knees, and sat on my lap.

Maybe we hadn’t had that for years. But we had it right then.

And it was the best ever.

Love to you,
Marie

You get what you need

“It will be fine,” said my aunt.

“Everything is in Divine Order,” shared my friend, Al (quoting HIS aunt, Gloria).

Thank you for your prayers, positive thoughts and supportive messages.

I drove to Dana Farber this morning in a dark rain, the kind that feels like it will last all day.

The doctor said that the scans showed no new disease but some growth of the current “minimal disease.” My CEA (tumor marker) is at 170. My last CEA was something like 70; normal is 2.5 and below.

Basically, we are watching three tumors. The one between my liver and diaphragm is stable. Yay! The two in my pelvis – one on my right and one on my left – are showing growth.

After discussing several treatment options with respect to our summer vacation plans, we decided to schedule another scan followed by some chemo appointments for August. I could call if I changed my mind and wanted to start chemo right away.

By the time I finished my appointment, the rain stopped completely and the sun started to break through the clouds.

This afternoon, I was lucky enough to go for a row with Lisa. When I arrived at the boathouse, she introduced me to Sara Hall, the author of the book I’ve been reading (Drawn to the Rhythm). Sara started rowing in her 40’s and, in three years, went from novice to World Masters Champion in the women’s single shell. On the dock, I got to watch the women’s quad, who are headed to Henley tomorrow. Both meetings infused me with the sense of endless possibilities, no matter where you begin.

The river carried post-rainstorm detritus and the current was quick. The sun was now shining in all its glory and the surface of the water was calm with very few rowers.

I set off and rowed directly into the next dock. With a little help, I got on the right course and the rest of the row was beautiful and smooth and amazing and soul-filled.

The beginning of summer vacation, with everything truly fine and in Divine Order. Thank you for your prayers, helping to bring all this about. I hope that you can feel the fine Divine Order happening in your life, or at least trust that it is revealing itself.

Love,
Marie