Good people

I start a new chemo regimen tomorrow (Tuesday) and I have to admit that I am a bit apprehensive. Thank you for your prayers and positive thoughts, and your support of me and my family in every way.

It is so hard for me to articulate the various ways in which your support graces our lives, but a friend sent this to me, from Father Fleming’s blog ConcordPastor.blogspot.com. It describes so many ways in which you are there for us and letting holy light shine through you. Thank you. I would love to be as supportive to you, and always hope that you don’t need it!

Love,
Marie

 I’ve been noticing, Lord, how many good people
really good people, are part of my life.
generous people
who selflessly give…
those who are kind,
without pretense or guile…
folks who forgive,
whose pardon is healing…
the ones who are holy
and don’t even know it…
folks who are gentle,
never harsh, rough or coarse…
those who are strong,
whose help lifts me up…
the ones who are pure
in thought, word and deed…
those of conviction
whose zeal never flags…
friends who are faithful
whose love never fades…
those who are happy
with genuine joy…
the honest ones, Lord,
whose truth is a gift…
folks of compassion
with patience unending…
friends who are loyal
when needed the most…
those who help me
without my asking…
people of prayer
whose presence is peace…
Good people, O Lord,
so many good people there are in my life…
They’re more generous and kind,
forgiving and holy;
gentler, stronger, purer by far;
more deeply convicted, faithful and joyful;
more honest, compassionate, loyal and helpful;
more thoughtful and prayerful
than I…
Make me grateful for these, Lord,
and teach me their ways,
these people, these friends
whose goodness is yours…
Amen.

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!

Door #3

This was a super tiring day but we ended up, I think, in a good place.

Not surprisingly, the CT scan showed growth. I knew it would, though it is still hard to hear it. The good news is that it doesn’t look like runaway growth. But it is growth, which means that we need to switch chemos.

My doctor was great about discussing options, and feels there are three:

FOLFOX+Avastin

This is similar to what I have been doing, in that I would get an infusion at Dana Farber every other week, and leave with a “to-go” bag hooked to my chest for the next two days. The primary difference is that I would be doing a drug called Oxaliplatin, which gives neuropathy. I’ve done this drug before, and it isn’t fun for sure. But it helped a lot last time….

Erbitux+Irinotecan

Irinotecan was part of my most recent regimen, though the toxicity built up and made me really sick in March and April. So I’m on a reduced dose. Still, they would pair these two. Erbitux, more often than not, gives a skin rash. The good news is, no to go bag. I would go in every two weeks for an infusion, and when I’m done, I’m done for two weeks.

Clinical trial: Erbitux+Irinotecan with the possibility of Avastin added (blind study)

Avastin has helped me this far, so I was intrigued, though a bit concerned about the constraints of a clinical trial. I’m used to setting my own schedule, like taking a week off when the boys start school, or when we have a planned vacation. But they assured me that this one wasn’t that strict and I could have that flexibility. The primary constraint was getting more frequent CT scans than I prefer (every 8 weeks rather than every 12-16).

Tiron and my friend Julie were there with me, and we discussed the options with my doctor and then with the clinical trial nurse (I guess she is a nurse? Can’t remember). They were really generous with their time – I think that between delays, conversations, blood draws and my periodic vomiting, we were in that room for two hours. (15 minutes is the norm.)

I decided on the clinical trial. No real reason, I guess, except that the break from that bag felt really appealing, and I thought, why not try to throw Avastin at it if possible. (No guarantee that I would get the Avastin, but there was a chance.) I had prayed for guidance and felt calmest with this choice, so that helped.

I would start next Tuesday, assuming that I qualified for the study. To determine this, my nurse drew more bloods and a urine sample, then she disconnected the tubing from my chest and I left exhausted.

Later at home, the study nurse called – my proteins in the urine sample were a little higher than the study permits. We are going to re-test on Thursday, just in case it is a passing thing. So, no definite answer yet.

I feel okay about this little bump. I had a long run on FOLFIRI plus Avastin – over seven years with breaks. So I guess it is time for a new line of defense. And even if I don’t qualify for the clinical trial, I can do something very close on my own with my doctor.

As for the skin rash – I’m going to out as much as possible this week because I’m sure that, if I get that rash, I will be feeling shy and self-conscious for awhile!

Thank you for your prayers and support. Sending you my gratitude and praying for your good health!

Love,
Marie

Birthday milestones

The boys had their birthdays this weekend, turning 13 and 10. One is becoming a teenager, and the other is entering double digits. A significant birthday for each of them.

It is significant for me too. I am keenly aware that I was diagnosed shortly after they turned 4 and 1 years old. I am in grateful awe that I am here to witness their growth and to share in these milestones. I honestly didn’t believe that I would make it this far, and that in itself is a miracle.

I am also grateful that this birthday for them is BEFORE I get the results of my CT scan on Tuesday. I can (try to) fully enjoy the day before dealing with whatever the CT scan may force me to deal with.

The doctors, I believe, anticipate growth. I wouldn’t be surprised at that news, based on some recent changes in my body. I can physically feel the growth of one of the tumors, I have pain more frequently and in new spots, and some lymph nodes are newly enlarged. None of those are good signs, though there is always a chance that things are “basically stable.”

Nevertheless, at my last appointment, for the first time, the doctors presented new chemo options for me to consider during these two weeks. This is so that, should the CT scan show growth, I will have had some time to mull the options and can make an on-the-spot decision about where to go next.

My two choices are FOLFOX (which includes a drug that gives neuropathy – I’ve had that before and it is not easy to live with) and Erbitux (which results in a “disfiguring” facial rash – also lovely). While I am grateful to have options, you have to admit that this is a difficult choice.

So I am hoping for stability and the ability to stick with the “devil I know.” In the meantime, I will celebrate the boys’ birthdays with a gratitude that I can!

Please send good vibes, as I send them straight back to you!

Love,
Marie

Good vibrations

These past few summer weeks have been filled with life events. We were sad to learn that our dear aunt and wonderful person on this planet passed away, joyfully attended a beautiful family wedding, received a visit from overseas friends (who brought Georgetown Cupcakes!), made a visit to the ER for stitches for one of the kids…I’m sure that the list isn’t complete. Oh, I had my CT scan last week – I get the results on Tuesday.

In the midst of everything, one of the boys decided to play the Tibetan bowl to help us to relax.

There are probably lots of ways to do this, but we play these bowls by first banging the mallet against the side to get it started (if you are good, you don’t need to kickstart it in this way!). Then we run the mallet around the edge of the bowl to keep the vibrations going and to change the frequency.

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J-man got the idea to add water to the bowl and then play it. At first he added a little water and, after he played for awhile, we noticed beautiful vibrations rippling evenly in the water. Then he added more water, and, because some of the water was already energized, we didn’t have to wait as long for the ripples to appear. And more water.

When the bowl was about three-quarters full, we saw this:

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The water started jumping straight up, like it was dancing! It was so fun to watch. Since our bodies are made of water, I figure that the vibrations from the bowl must energize those water molecules in a good way too.

Since I went through that really bad spell in March and April, I have slowly been regaining my strength and energy. As I recover, I’ve been especially conscious of what drains my energy and what gives me energy.

I hope that you are able to fill your day with whatever gives you energy, things that make every cell in your body vibrate together and dance.

Love and blessings,
Marie

CT scan tomorrow (Tuesday)

I hope you are having a wonderful July 4! We had a truly lovely day, and are winding up for the evening.

And tomorrow morning at 10:20 Eastern time, I have a CT scan. Prayers and positive thoughts for a stable or improved scan are most welcome.

Sending you love and multi-colored fireworks lights,

Marie

Beach vacation

We just returned from a relaxing and restorative beach vacation.

I’m not a beach person. I grew up in Pittsburgh (a land-locked city, though it does have three rivers!), and our family very rarely traveled from there. My father ran a grocery store that was open six days a week, and he worked on Sundays to get ready for the next week, so there wasn’t time for a vacation. When we did go away, it was a quick overnight trip to Niagara Falls or Gettysburg – someplace educational, not relaxing.

I would hear friends at school talk about their family trips to the Outer Banks in North Carolina, to places like “Duck” and “Nags Head.” I had no idea what they were like – I alternately pictured glamour and tacky. The vision of a family beach vacation has lived in the back of my mind for almost 40 years, taking on various shapes and probably a life of its own.

In my grown-up life, I’m lucky enough to take several vacations a year with my family. Considering where to go this summer, a friend recommended getting a large house by the beach and this high school memory popped up. Maybe I could finally have that family vacation – not just with my husband and sons, but with my parents and my sister and her family and my brother and his girlfriend as well.

I asked around, got some good advice from friends, and booked a house on the beach that had a pool and enough bedrooms to fit everyone plus our dog. Everyone generously agreed to use their precious vacation time during that week.

I got more and more excited: I would finally get our family beach vacation on the Outer Banks!

The week before we left, I started to panic: Except for my sister, I do not come from a family of beach lovers. My parents like to keep busy and a beach vacation doesn’t fit that bill. My brother does not like vacations where you “just sit around;” the beach isn’t high on his list of destinations. I currently live about an hour from some gorgeous beaches, and I often go an entire summer without seeing the ocean. Was this one of those events that was better in my mind than in reality?

But, miraculously, it all came together. The house fit all of us comfortably, was clean and spacious, located in a good area, and had a pool. Everyone seemed to love the beach, which was right outside. They could walk in the sand, or simply view it from the deck. There was plenty around us to do. The kids all got along great. My husband even relaxed a little, and our neurotic dog even settled in (love him so!).

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And now, we are home. I’m still feeling the nice effects of vacation and hoping to carry those feelings with me as I head into chemo tomorrow. Your prayers and positive thoughts are welcome, and we are grateful for your help in every way.

Love,
Marie