As life continues…

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

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

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

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

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

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

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

Love and blessings,
Marie

Chemo today

Chemo this morning – prayers and positive thoughts are welcome.

Last time around was my first time on a new chemo. They gave me the usual anti nausea meds (which knock me out) plus (new for me…) the maximum allowed dose of IV Benadryl. I was out of it for three days total. Going to see if we can jiggle that a bit!

That assumes that my white count is high enough to even get chemo today. As a normal person walking around before chemo, my white count tended to run low, though it was never a problem for me. However, when I started doing chemo, we learned that the drugs wiped out my white cells.

The answer to this is to get an injection of Neulasta (or something like it) every time I do a round of chemotherapy.

Your white cells, as an adult, are made in the bone marrow of your large bones, like your hips. Neulasta rushes that process along, so i think of it as speed for my bone marrow.

The process is painful, and getting that shot every other week over these many years (which, yes, I am blessed to have), I developed hip pain.

BUT – now that I am doing a new chemo regimen, maybe it won’t be so hard on my white cells? So I asked if we could skip the Neulasta, and my doctor agreed to try it.

My hips feel great, and I’m hoping my white cells are swimming along enough for me to get chemo today.

Love,
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

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