Sometimes, I just can’t make lemonade

I had chemo on Tuesday and, as usual, started vomiting even before the show got started. As usual, they administered IV anti-nausea drugs and knocked me out. Typically, once I get home, I continue to feel crappy until Thursday, when my chemo pump is done and I return to Dana Farber to have it disconnected. Then I return home, shower and rest and recuperate.

However, this week, once home on Tuesday, I couldn’t stop vomiting. I couldn’t take a sip of water without it coming back up. I couldn’t take any meds by mouth (because the water triggered vomiting). There is one pill that I could put under my tongue, but simply looking at it made me vomit. I could barely (and only sometimes) hold down small amounts of ice chips.

This continued throughout Wednesday, day and night. My skin smelled like chemo and, no matter how much I brushed, my teeth felt gross. I needed a change of scenery so, on Thursday morning went downstairs, only to get sick again in the closest bathroom. Unfortunately, that bathroom is used by the boys and their friends. Being on that bathroom floor was enough to trigger more vomiting, so I headed back upstairs.

I figured that I would feel better once I got disconnected from chemo later that day, but no. I vomited at Dana Farber before the disconnect as well as after, then continued after I arrived home. I showered, changed the sheets and aired out the bedroom. I tried moving around. Nothing made a difference.

I couldn’t figure out what I was supposed to do with all this suffering. I didn’t understand the reason or the purpose. I considered stopping chemo for good, but I also know that I will just be in a different kind of pain if I do that. No road ahead looked good. I prayed for someone to come and shoot me dead.

On Friday, the vomit-fest continued. I couldn’t get through my shower without getting sick and then spent most of the day in bed. I was so tired of living in my bedroom.

By now, vomiting was all I could think about. It felt like I was drowning in thoughts of what triggered it, trying to avoid it happening, and having it actually happen. These thoughts consumed every minute. I tried to be grateful that I was able to do chemo at all. I tried to be grateful that I was at home and not in the hospital. I tried to think of something other than chemo and sickness, but this now appeared to be my entire reality.

One of my coping mechanisms is to focus on the present, so late on Friday night, I practiced that. I wanted to focus on something outside of myself, outside of my room. I could hear, through my open window, the crickets chirping and, beyond that, the cars on the busy road near our house. I focused on those cars – were they a continuous stream? Were there breaks in between? Did I hear any trucks?

Suddenly I was about 8 years old, spending the night at my grandparents’ home. I slept in the front bedroom facing the busy street on which they lived. When I woke in the middle of the night, I loved seeing the glow of the streetlights and hearing the pattern of cars as they drove by. Sometimes, I would scramble to the foot of the bed and look out the window, watching the cars as they passed. At that time of night, there were only one, two, or maybe three cars at the same time, and I got to witness it.

This memory brought back all the wonderful feelings I had about staying with my grandparents and made me feel better. Throughout the night, each time I got nauseous, I would focus on the moment, listen to the cars and before long, find myself back at my grandparents’ home. Did it work every time? No. But it worked enough so that I could find some moments of peace.

Eventually, I felt well enough to page through Facebook. Friends of mine posted that they were in Gethsemane, and they both posted this photo:

“My Father, if it be possible, let this cup pass from me; nevertheless not as I will, but as Thou wilt.” and “…My Father, I do not understand You, but I trust You.”

I don’t want to walk this path. Not at all. But I suppose this is the path in front of me. I don’t have to be happy about it, but I do need to follow it.

I hope that, if you are mired in something that you cannot see or feel your way out of, that you can find an island of peace in your heart, and that a message comes to you from somewhere, somehow, to provide support and a little opening for the light to get in.

Love,
Marie

 

A little update after last chemo

Thank you for your prayers and good intentions. I made it through chemo without getting sick.

However, I was passed out for the entire process. Before I got chemo at all, I talked with Mike (who I sometimes see instead of my doctor) and started to feel nauseous. So I took an anti-nausea med right then.  About 10 minutes later, I was feeling nauseous again. He warned me that if I took another med, I would pass out. I warned him that if I didn’t take another med, I would surely vomit.

After that, I did make it to the chair in the infusion room, but the next thing I remember is my nurse waking me to say that it was time to go. She also joked that I was so passed out that someone thought I was dead and came to find her. Makes me wonder how often someone actually dies while getting chemo.

Thankfully, that wasn’t my fate and I am still here. A few days later, my white cells dropped (a side effect of chemo) and I caught a chest cold and lost my voice. I’m going on four days with no voice. The kids don’t seem to notice – they will be on another floor of the house and yell things like, “Mom, call me when dinner is ready.”

I’m scheduled for a CT scan on Friday, but between the drinks required and the contrast injected into my body during the scan, that can’t help me heal from this cold. Plus, my frequent coughing makes it hard to stay still for the pictures. So I will postpone that study. More to follow…

Sending my love and gratitude,
Marie

No chemo today

Thank you for your good wishes and prayers.

But, well, I bagged. I couldn’t go through with it. For the first time that I can remember, I declined chemo mid-process.

The anticipatory nausea started when I entered the blood draw area. I was holding it off, but then the nurse injected TPA into my port, which made me light-headed and more nauseous.

When I left the blood draw area an hour later, I noticed that the waiting room was PACKED and abuzz. There should not be this much cancer in the world. The air felt heavy as I walked through the waiting room filled with a sea of people of every age and type suddenly floating around me – bearing surgical scars, breathing through oxygen tubes, slouching in wheelchairs and wearing masks and gloves.

I plowed ahead to the elevator to see my doctor, as scheduled. During our conversation, the nausea let loose full force. Multiple times. Lovely. Thankfully, I travel with vomit bags. Handy dandy for times like these.

Usually, after seeing my doctor, I have to sit in that waiting room to wait for my chemo to be ordered and my infusion to begin, but the DFCI people are SO NICE. The nurse arrived and walked with me through the back entrance, bypassing the waiting room and going directly to my chair in the infusion center. After I sat, I was barely holding it together and every time I looked at the anti-nausea meds I was supposed to take, I would vomit again.

My chemo was scheduled to start at 10:15. At 12:30, I was still sitting there, sick and crying and saying that I really couldn’t do this. The man next to me had the TV blaring. The woman across from me was meeting with a dietician and discussing food options. Lunch was being delivered on a cart. I tried to be zen about it all.

“Let’s try giving you some fluids,” seems to be the answer to every problem.

“I don’t want fluids. I just want to stop vomiting,” I said, two words at a time, between bouts.

The nurse gave me some IV anti-nausea meds, then, when my stomach calmed down, asked me to think it over.

I thought that I should continue my treatments. I thought about the kids, that I should do absolutely everything for them. I thought about just getting this one round underway and done. I considered that it might get better. I thought about fulfilling my commitment to 8 sessions, much like we expect the kids to finish whatever activity for which they ask us to sign them up and pay for. I thought about how I would handle the situation if I were the mom and this were my child resisting and begging not to do it. I don’t know what I would do, but  I vowed to be kinder the next time my kids resist doing something.

The social worker magically appeared to help me think through this. Perfect timing. Love the serendipity.

At 1:30, the doctor, nurse and social worked all asked what I wanted to do. By now, Tiron had arrived to hold my hand.

“I want to go home. I’m tired. I feel sick. This doesn’t feel right.” Not that chemo ever feels right.

This is unusual for me. Once a process is underway, I suck it up and go with it, no matter what. If it is stopped, it will not be because of me. But I just couldn’t do this round. It felt way too hard. I guess I do have a breaking point.

Once home, I showered to create a fresh start and groggily picked up one son from school. I thought he would be thrilled, but instead he reminded me that surprises aren’t always his thing.

“Why didn’t you tell me? I didn’t expect you.” Back to the real world, and so grateful.

Love,

Marie