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

Visit to the Emergency Department

Tuesday would normally have been a chemo day, but a series of events set me up for a procedure on Friday. While I do believe that God is with each of us, especially when we need him, I was having a hard time feeling the support….but I am getting ahead of myself.

This is long, so I will do it in two separate blog posts. This one will focus on the ED visit. If you want to skip the story and go straight to the bottom line, see the next post.

WARNING: This post contains explicit talk about bodily functions.

Sunday

I had trouble peeing all day. Drinks were going in, but nothing was coming out. Nothing.

That night, I called the oncologist on call (not mine) who recommended that I drink two more large glasses of water, wait two hours, and if nothing changes, head to the ED.

I left for the ED around 11:15. Because the boys were already asleep and it would be scary to wake up and find neither parent at home, my husband stayed home and I Ubered in alone. I was otherwise feeling good and knew that I could call him if I needed him.

Before I left, I texted my energy healer. Just before I reached the ED, she texted back that she would work on me.

This was a new ED for me, and I was impressed with the operations and the people. The check-in woman quickly assessed that I have a complicated history and decided to look it up rather than make me go through it all. Her approach and attitude were above and beyond anything I have experienced in an ED.

Very early Monday morning

My initial ED nurse, Tori, was wonderful. We bonded over kids (as in, when they wake you at 5:30 a.m, iPods are okay, but snacks are not – you have to draw the line somewhere!) and laughed alot. She gave me a cup to pee in and said, “I have to give you this cup, and you have to try, even if we know nothing is going to happen”

The floodgates opened. I am always in awe of how my energy healer works!

But I was there, so we went through the tests. Blood tests, including kidney function, which was fine. Ultrasound, to figure out if my bladder was actually empty. (They couldn’t tell.) And then the resident doctor in charge of my care wanted to do a CT scan.

I fought this scan. I argued that I was due for a scan in two weeks and I hate extra radiation. The resident doctor thought I was being ridiculous – I’ve had so many, what was one more scan? I wanted to flip him off. He listed lots of low-probability but scary outcomes. I’m used to playing the odds, and I’m feeling strong these days so pushed back on them all. He pointed out that I might need a stent and waiting two weeks could endanger my health. That resonated somewhere deep within that I didn’t want to acknowledge, but that internal vibration made me consider it a little.

I told him that I would call my husband, and he asked what information I would get from that.

“He’s a radiologist.” Thankfully, that shut him up and he walked away for awhile so I could figure this out. I called my husband for his opinion, as well as the oncologist on call. They both said it could go either way.  I finally gave in and did the scan.

The CT tech was super nice and made that procedure go as smoothly as ever, and when I returned, I asked for a bottle of water to help flush the contrast out of my body. The gentleman helping me told me that they didn’t have bottled water but he could get a pitcher of water for me. I cringed, thinking that he was going to get it from the bathroom sink, but when he returned with the pitcher, he told me that it was reverse osmosis and it actually tasted really clean. Life was looking up.

Time for the shift change, so I had a new resident doctor and a new nurse in charge of me. The new resident doctor told me that the CT scan showed tumor pressing on my bladder. No surprise there. She gave me my exit papers (I was really impressed with her efficiency – that part typically takes a long time), and told me to sign them and give them to the nurse when she came to disconnect my IV.

So I waited. And waited. And then, I don’t know what triggered it, but I started vomiting.

I carry bags with me, so I was prepared for this, but I needed help. I couldn’t find the trash can. The nurse call button was far out of reach. So I started yelling for help. A cleaning person came by and said he would find my nurse.

When the nurse came, she took one look at me and said, “This changes everything. We have to admit you.”

NOOOO!

I tried to explain that vomiting is just what I do in a medical setting. I showed her the 15 bags that I carry with me. No dice.

She left and the resident appeared, who explained that they needed to admit me and if I left, it would be against medical advice. Fine with me. It was after 3 a.m. I wanted to go home.

The nurse returned and asked if I wanted my IV to be disconnected now. As opposed to when??? She said, “Well, in case you are admitted.”

“No. Disconnect me now please. I am going home.” I had to reiterate this a few times, but she finally disconnected me.

“The attending physician would like to talk with you.”

“Fine.”

More waiting. Then my nurse took me to where the attending was. As we walked there, I noticed that I was the ONLY patient remaining in the ED. All the other beds were neatly made and ready for the next influx. All the doctors and nurses were far, far away, all in one area, typing on their computers and iPhones. I waited awhile for the attending, then said, “I’m just going to leave.” I signed the papers that I had and headed out.

I was finally free, and hoped that I didn’t need to return. When I got into the Uber, the driver offered me a breath mint. At first I declined, then remembered that maybe I needed one…..

Changing habits

Thank you for all your prayers and good wishes. As we are all adjusting to this new regimen, it helps so very much.

The first time I received this new chemotherapy, I had a Benadryl hangover the next day. So for round two, we reduced the Benadryl, and I got a smaller hangover. The next time, which was about two weeks ago, we decreased the Benadryl even more, and, instead of a Benadryl hangover, I had huge, swollen, watery eyes the next two days. So we are still adjusting.

I find that I am adjusting in other ways as well. Over the years, I have been on two previous chemos  (FOLFOX and FOLFIRI), both of which left me exhausted. One minute, I would feel fine, and the next just hit a wall; as time went on, my periods of good energy became briefer. After years of this, I stayed home as much as possible and only made plans that could be cancelled.

On this new chemo, I have more energy. But old habits die hard: I continued to stay close to home and do very little. Noticing this habit, I decided to push myself a little more.

I’m thrilled that we were able to travel to Maine and visit friends. My husband was a huge support, and our friends (who are more like family) took great care of me and understood where I might be cautious and where I might want to push myself a little.

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Playing on the beach in Maine

On another day, I took our ten-year-old son and his two friends rock climbing, out to lunch and then swimming. I was a little nervous, committing to a full day of taking care of three boys, but I told myself that I could always take them home if I got tired. It helped that they are polite and well-behaved kids, and I checked in with myself during the day to see how my body felt. I was thrilled that we could do this! My husband went on a driving adventure and when he returned, I was actually able to actively listen to his experience without being distracted by some health need! I didn’t realize how I missed that.

We went as a family to the St. Anthony street festival, walking among the vendors and crowds on the city streets in the summer sun. This was a big risk – no convenient bathrooms, walking the whole time we were there, being in a crowd. But my husband was there and I knew that he would help me if I needed it. But I made it through!

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Eating our way through the St. Anthony Festival

And, all by myself, I took one of the boys exploring Faneuil Hall Marketplace in Boston. This was probably my biggest leap. I would be on my own and responsible for a child, with no convenient bathrooms (they are my little safety net!), and walking much of the time. Our schedule was not set. I worried about driving if I didn’t feel well, but then realized we could Uber back and forth. I decided to try it.

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Quincy Market and Faneuil Hall are side-by-side

Faneuil Hall Marketplace can be imagined as a large outdoor shopping mall. Salespeople stood outside their storefronts in the beautiful weather, chatting with passersby and handing out samples.

As we passed a make-up store, a young man stopped us to give a sample. He gave us a cheery greeting, then took one look at me, gasped audibly and said, “Oh  – your FACE!”

I had momentarily forgotten about my face. The current chemo drug often causes acne – one doctor described it as a rash and another called it a disfiguring skin condition, so you can imagine the range. For me, the “rash” is always present but changes daily. On this particular day, the skin on my face was a mix of red bumps, puss-filled bumps, and scabs of blood that I couldn’t get rid of – bleeding just happened whenever it happened and dried blood was on my nose, cheeks and forehead.

Yes, my face was a mess.

I anticipated that, at some point, I would get a comment from a stranger, and I planned to say, ‘It’s a side effect of some medication I am on.”

But instead I said, “It is a side effect of the chemotherapy I am on.”

I watched the statement sink in.

“Oh, the stress,” he nodded, as if he understood. “The stress must cause this.”

I felt like he was about to recommend a product, and I hated that he thought that my stress level was so high that it would cause this. (Okay, maybe it is, but still…) I tried to be educational, though I suspect that my tone sounded slightly defensive or even condescending, as I answered, “No, the chemotherapy attacks the cancer and, when it is working, it causes my skin to do this. It is the medicine itself, not the stress.”

His eyes got huge and I realized that he really meant well, but I would do us all a favor if we just moved on. So my son and I walked away and enjoyed the rest of our day.

This made me realize how rarely I am out in public. It felt good to be out, to spend time with the kids and do normal things, and to not drop from exhaustion or pain. In fact, I appreciated that I had enough energy to deal with his comment and find it only mildly annoying, and not energy-draining. And building new habits also builds my energy.

Thank you for all your support that enables this to be. It really helps us to have a better life. It’s the little things!

I hope that you are able to spend time doing things that give you energy, and that any inconveniences are reminders of the power you have to deal with them!

Love and blessings,

Marie

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