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

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

The Power of Presence

When I first started this chemo gig, my infusion space at the hospital looked like party central. I invited friends and we gathered into the cramped space. We sometimes had food, we always had laughter, and I eventually ended up looking drugged because one of the anti-nausea meds made my facial muscles droopy and me unable to speak clearly.

Over time, the scene changed. We finally figured out that we could lower the dose of that face-altering drug. I stopped taking the steroids (which made me a crazy screaming person who couldn’t sleep) and replaced them with IV Ativan, which alleviated my tendency to vomit but put me to sleep.

Though we cut back on the party vibe, I was lucky enough to still have a friend to join me each time. They would support me through the port access and blood draw, and sit through the meeting with my doctor. After that, my nurse would administer the Ativan, which would shortly knock me out.

I always suggested that my friend leave right at that point. Why bother to stay only to watch me sleep? And what if I drooled or did other embarrassing or gross things – I wanted to keep my friends and some shred of dignity.

Recently though, an old, dear friend joined me for chemo for the first time. In her bag, she brought a shawl in case I got chilled, and a few other things. I can’t remember exactly what they were, only that every time I needed something, she had it in that bag. I was really touched.

We reached the point in the process where the nurse gave me Ativan, so I thanked my friend and told her that she could feel free to leave.

“I’m staying,” she said simply.

“Did you bring a book?” Her bag was shapeless and didn’t seem to hold one.

“No,” she replied. “I am going to sit with you.”

“I’ll be asleep,” was my weak but best response.

I didn’t have kind of time or energy to dissuade her, so that was that. I thought her idea was a little crazy but I was drugged and in no position to win with logic. And I love her whether or not she has a crazy idea.

So we moved to a room with a bed (for me) and a chair (for her), and I was out.

Some time later, the Ativan wore off and I opened my eyes. The first thing I saw was my friend.

At that moment, I was feeling nauseous and in pain, but my overwhelming feeling was the relief of, “I am not alone.”

I suddenly remembered: I do typically wake during chemo. And when I do, I grope around for the nurse call button. Eventually a nurse arrives who looks me over and asks what I want. I stammer that I need my nurse, she says that she will get her, and leaves.

Everyone is very kind. But they are strangers, and it takes effort to interact with them. After each chemo session, I block it from my mind as part of the whole event.

But today, I remembered, possibly because this experience was such a contrast. And not only did I feel so supported, but my friend looked at me and knew what I needed.

Firmly, she said, “I will get your nurse.”

No call button. No unfamiliar intermediate nurse. My friend left and I knew she would return with my nurse AND the medicine I needed. And she did.

She stayed with me until my chemo session was complete. Each time, when I finish, my husband arrives, and he and the nurse help me to put on my shoes and get me into a wheelchair. I never remember anything from there. But this time, I remembered that my friend was still with me. And that made all the difference in the world.

 

A week in the life

At the start of my most recent chemo week, I looked ahead at the schedule. On Monday, my husband would be leaving for a four-day conference on the other side of the country. On Tuesday, I would start chemo.

This meant that my husband would be gone from Monday through late Thursday, and I would be home but physically and emotionally unavailable to the kids from Tuesday through Thursday or Friday (depending on how the week went).

Fortunately, we have a fabulous au pair, but my kids are at an age where they simply cannot go for 3-4 days without at least one parent on board, especially when one is sick. Their emotional bank risked being drained.

Alarm bells ringing in my head, I alerted the school and tutors. While they are all fabulous, none are or should expected to be a parent figure, but I knew they would do what they could.

So, on Monday, off goes my husband to his conference. On Tuesday, off I go to chemo.

As chemo weeks go, my treatment proceeded smoothly. Well, other than one glitch: I showed up at Dana Farber only to learn that I wasn’t actually scheduled for chemo. Part of me wanted to say “Great!” and run home, but I stayed put and they managed to find a slot for me.

Then I went home with my little “to go” bag of chemo pumping itself into my port, and I planted myself in my bed for the next few days.

Monday, Tuesday and Wednesday seemed to go fine. Everyone got to their scheduled classes, homework was completed and outside activities were attended.

However, on Thursday, one of the boys got into “trouble” at school. He works hard to appropriately manage his energy during the school day, but on that Thursday, he had few inner resources remaining to control his giggles. His behavior disrupted the class and needed to be addressed. We were grateful that the school handled it well, but, especially because he works hard on this, he felt horrible about himself and his life on many levels. He felt like he failed. Although I tried (pathetically, from my bed and hooked to a tube) to tell him it was okay, this was a tough week and at least it was the giggles and not something really bad, he accepted no excuses for his behavior.

Shortly after that, our other son tearfully told me that he still hopes that I will be healed but he now feels like this is it, this is how life will be: Treatments where I am in bed, days where I lounge around recovering, and then some good days, only to be followed by treatments again. On the plus side, his comments opened the door for us to talk about many aspects of his feelings. For example, he wondered aloud, might it be easier if I just died, because then all our suffering would be done and maybe we could all move on? (I have felt that way many times.) He asked about God and why he would let this happen. He didn’t know how he could continue to handle the stress of living with all this. I get it.

While I am glad that he was able to access and articulate his thoughts and feelings, this was one of the most difficult conversations I have had in my life. I wanted to be fully present for him at the same time that I just wanted to be anywhere else. But he was in a deep hole and it was awful for him and I needed to be there for him in any way that I could, no matter how crappy and inept I felt.

So, there we were. The kids were unraveling in their own ways, and I was not feeling like myself (to say the least) and unable to support them.

My husband arrived home late Thursday night, and we all started to rebuild the pieces of our lives. Slowly, one step at a time. By then, I was finally unhooked from chemo and had a long shower. We were back together as a family. We could move forward.

Luckily, my physical recovery was faster than usual and we were able to have friends visit on Saturday and Sunday. The normalcy of their presence halted our spiraling, provided healing, and brought us back to day-to-day life.

One step at a time, we regained our footing and our daily dynamic returned to what it was, slightly shifting in ways only visible (I think) to ourselves. I hope this experience helps the boys to be resilient in some way, but we are in the middle of the journey, so it is hard to know exactly where this will lead.

We are grateful to be doing this together and to have family and friends who are in this with us, who keep us heading down the path of light and joy and grounding and love. Thank you.

Blessings,
Marie

Talk Dirty with Me

Last week, my life was, at its heart, a shitshow. At times, literally.

This is likely to be a relatively graphic post. If you might be squeamish or uncomfortable, especially about bodily output, feel free to exit now. However, if you decide to come along for the ride, please know that, in rectal cancer, sometimes things get yucky.

Let’s go back to Tuesday of last week, when I went to Dana Farber for chemo.

Lisa drove me there, and I told her that she could just drop me off, but I am so grateful that she stayed. I don’t know how I would have made it through that appointment by myself.

When I met with my doctor, we chatted about my past week: The open bellybutton wound, the various pain sites, the horrible intestinal blockage from the previous Friday, my trials with trying to get advice from them over the phone and, oh, by the way, I’ve several days of constipation.

He looked worried at that last one and told me they would have to do an x-ray before deciding on chemo.

Before deciding on chemo????

Well, he said, the constipation could be due to a tumor blocking the colon. If that were the case, no chemo today and surgery ASAP to remove that part of the intestine and move my colostomy bag to another place.

I’ve been through that surgery twice before, and, while it is not fun, I know that I can do it. Still, I focused on no blockage.

I thought he was done but no. He wanted to show me what was behind Door #2.

Another possibility: Tumor is weighing on my colon, making it difficult for the colon to move and process nutrition. If my colon cannot move, I would need a permanent G-tube and 24/7 IV nutrition. Would I work with the surgeon I love (who is at a different hospital) or should he find one here for me?

Select a surgeon? I was still stuck on “permanent G-tube and 24/7 IV nutrition.” I don’t like to leap ahead at possibilities, but his talk of picking a surgeon left me spinning and stunned and wondering if I would ever be able to eat solid foods again. I tried to focus on the present moment, that maybe instead I could have “what was behind the curtain” or even run off the stage and choose none of the above.

Instead, Lisa and I (in my zombie state) left his office and took an elevator, the bridge, and another elevator to get to X-ray.

Lisa insisted that we pray (thanks!), then I did the X-ray and returned to the doctor while Lisa waited for a copy of the disk (that I could bring home for my husband to scrutinize if needed).

On my way back to the doctor’s office, I stopped behind one bank of elevators, sat on the floor, and cried.

While there, my phone dinged with three texts. The first was from a woman I know, not in person, but through this blog. Her mother read my blog but has since passed away. The daughter and I became friends and stay in touch as we can, though not with regularity. Her words in this unexpected text reached my heart, as though she and her mother were saying it would, somehow, be okay. Another text arrived from a friend simply checking in. And the third text, from a friend who is an energy healer, asked if I might need some help.

So I took a deep breath, soaked in the love, and ventured on to see my doctor.

The good news is that, while I am officially full of crap, nothing obvious is slowing down the works and I was able to get chemo last week. (Don’t you love it when chemo is the best case scenario?)

In the days that followed, I continued my chemo and recovery at home, in bed, really sad. I never before had considered the thought of a feeding tube; I don’t know what I would choose to do.

Then one morning, as I lay in bed looking at all the green, leafy trees outside my bedroom window, I noticed one dead branch hanging in front of them.

Often, when I need perspective and strength, I think of my grandfather (who loved good, fresh food) and hoped he was with me now. It felt like a fantasy, and I don’t like to make deals with the spirits, but I suddenly said to him, “It sure would be nice to see a cardinal on this branch to say that you are with me.”

I kid you not, a cardinal almost immediately landed and stayed for maybe a minute before it flew out of sight.

I know that I dodged a bullet last week, and for that, I am grateful. But as I continue to work through the slow colon issues, I can’t help feeling that Door #2 could be looming. Wish me luck. And thank God and the universe that you can eat and poop!

Love,
Marie