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

Onto the next big thing…

Consider it pure joy, my brothers, whenever you face trials of many kinds.
James 1:2

This timely sentence popped up on my Facebook feed this morning. I so appreciate your support, especially through this most recent stretch of medical appointments, so wanted to share the news from last week.

On Tuesday, we saw my oncologist to get the results of my CT scan. Basically, all of the tumors have grown, so this chemo apparently isn’t working. Bummer for that, and also because my quality of life was so much better on this chemo than on anything else I’ve done!

I need to add that, before this most recent chemo (Erbitux), I was doing FOLFIRI and I recognize that I was super lucky with that. For most people, FOLFIRI tends to work for months, but I, somehow, got SEVEN YEARS out of it. I remain grateful for that. I guess I expected the same for this new one.

Thankfully, I have a few other chemo options, and we are looking into immunotherapy options as well.

So no chemo this week. The anxiety is enough – ha ha. We will use the time to make a decision and then move forward with the chosen chemo after that.

The other good news is that I was able to attend our son’s fourth grade school play. Before the play started, I talked with a mom who was sitting nearby. Making conversation, I asked if she worked in the city. AND, not only does she work in the city, but she heads a research lab for immunotherapy drug development and trials, at the hospital affiliated with Dana Farber! Wow. On top of all that, the play itself was actually enjoyable and fun, and he did a great job.

(Next part is a little explicit – skip the rest if you are easily queasy.)

This weekend is a little challenging so far, as I am having trouble, again, urinating. I thought that the stents would fix this, but there is a tumor in my bladder which can throw off blood clots, and that can…block the path out. I’m drinking water to try and increase the pressure and push that blockage out of the way – I want to avoid another visit to the ER. Again, it is the simple things! Next time you run to the bathroom and feel like it is a bother, recognize that it is a good thing!

Not sure that I would say that my current trials are pure joy, but I will try to see them that way. Thanks again for all your prayers and support. I’m tired, so will wrap up here.

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

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

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.