Punchy Mommy Believes in Life

How I evicted the worst uninvited overnight guest and took back my life

Category: Primary Mediastinal B Cell Lymphoma

The last day

There was far less pomp and circumstance on my last day of chemo and last day in the hospital than I thought. I envisioned balloons and cake and ice cream for everyone! But alas, as I crawled to the finish line by my finger nails, neither I nor DH or any of our family members had the energy to celebrate. We were relieved for it to be over but apprehensive about what the next step would be. Radiation or no radiation? We also faced a trip to the Cancer Epicenter of the South and Oz in one week to meet with doctors. There was still so much to be decided.

And so came the last day came. We were on our own that day, DH and I. It was a day in between Sister2’s week long visit and Mother2’s visit. DH had to coordinate my discharge while dealing with Little Man’s needs. The nurses quietly prepared a little ceremony, one they do for everyone on their last day of chemo, while I was getting ready. DH and Little Man waited for me at the nurse’s station and my nurse pushed me in a wheelchair to meet them. I was so tired that day. My whole body felt heavy and bloated with chemicals and IV fluids. I arrived at the nurses station to find two smiling boys waiting for me. Little Man leapt into my lap, ready to be pushed around the hospital in my wheel chair. Faster, faster, slower, faster, wohooooooo! I’m pretty sure he thinks that what we do at hospitals — ride around in wheelchairs.

All the available nurses quickly gathered around and one of them read a poem about the last day of chemo. They meant really well, they did. But, reading an emotional poem about healing and fighting cancer and all of that to someone who just finished the last of six rounds of chemo, which were administered three weeks apart for 96 hours, is just something no one should do. Hadn’t I cried enough? So, I sat there and cried while hugging Little Man, who was wondering why everyone was standing there looking at us. As the poem was read, I remembered Little Man visiting me each morning I was there. Waiting for me in the waiting room and shouting Mommy! as I hobbled into the room with IV pool in tow. I always saved a treat for him from my meal tray to sweeten our visit. Everyone likes to focus on food! Sometimes it was just some graham crackers or cereal and other times it was a muffin or cookie. He devoured each treat as though it was the most special of surprises. More, More! There were so many days in the hospital when I felt so bad that I didn’t think I could see him. But I forced myself to get up and out of the bed because I knew that I desperately needed those 30 minutes with him. I needed to look him in the eyes, to smell his hair and skin. I needed him to snap me back to reality and to remind me that I had a job to do, I was his mommy. He needed me. His love was so gentle and kind. Mommy has a boo boo. Wanna kiss it! That’s Mommy’s medicine. She feels better. He showed me the man he is destined to be. As though his hugs and kisses weren’t enough, he helped push my IV pole, holding it in his little hand in just the right place so my IV tubing didn’t crimp, and pushing it gently across the floor. He would look up at me and tell me with his eyes, see Mommy, this can be fun. And when I had enough and had to go back to bed, he hugged and kissed me and never cried, Mommy’s going to the doctor. Mommy’s going to the hospital, he would say.

My mind wandered around all of these memories while we sat there listening to the poem. When they were done, they  all looked at me as though I should give a speech, so I said, Thank you, it’s been great. It’s been great? It was great? What’s been great about this? The food sucked, I had chemo shot up my grown for 96 hours, I was sick, I was tired, I was nauseas, I was kept awake at all hours of the day and night, and I had to deal with incompetent and sometimes unkind nurses, It’s really not that big of a deal, one said to me when I complained about the rate my chemo was dripping and his failure to keep it on schedule. Thank god I had enough in me to quickly respond, Really? It’s not a big deal? Have you had cancer? Have you had to fight for your life? No, he said, well, let’s talk about what a big deal it is when you do. This nurse and I ultimately came to an understanding, he did what he had to do to take care of me and keep me happy and kept his mouth shut. But he only let me push him so far, You can’t have both Ativan and laxatives tonight. You can choose one because I don’t feel like cleaning up your crap in the middle of the night because you were too zonked to go to the bathroom. Fair enough, I can deal with constipation on another day. 

I pushed these bad memories away and remembered how great it was to spend those mornings with Little Man in this strange place. It was great to step back as a mom and observe him as the little person he is and who he has the potential to be. It was great to just breathe him and his innocence in fully. I carried his scent with me all day and recharged the next morning when he visited. And, that’s how I got through it all. So yeah, it was great.

Tell tale signs

striations in rock

It’s bad enough to have cancer. You’d think with a diagnosis like that you would be allowed to turn inward, to focus on yourself, and to fight on your own without anyone else watching. But, no. Leaving a mark on your soul isn’t enough for cancer, it has to leave visible marks on your body too. At first, I just had a few small scars. One on my chest where they took core samples of the tumor through my chest, between my ribs, and into my mediastinum. Then came the bone marrow biopsy, which was just a small hole on my lower back hip. After that came the lumbar puncture where they collected some of my cerebral spinal fluid to test it to make sure there were no cancer cells there. These marks didn’t bother me. The little holes healed. The red turned purple. The purple turned pink. And soon, they disappeared.

Then my hair fell out. Holding fistfuls of my thick red hair was something I had never imagined. I knew it was coming, everyone told me it was coming, but when it came it hit me like a ton of bricks. Now there was visible proof something was wrong. I never saw what my tumor looked like because it was inside of my body. But now, it somehow made it’s way out and showed it’s ugly self. A month or so later, my beloved eyebrows and eyelashes fell out too. I wanted desperately for them to stay, I felt less sick with them. But I woke up one morning and they were gone. It’s remarkable how unrecognizable I was to myself without hair. All I saw was a shiny round head with protruding eyebrow bones and red tinged eyes. That can’t be me.

Early on in my treatment I noticed that my nails started turning brown. I don’t think it was the nail itself, it looked like it was the skin of my nail bed. You could see striations in the coloring too. To me, it looked like with each chemo cycle, I got a new brown striation. These striations caused my nails to look just like a dried up water bed with all the varied colors and lines. Also, I had several birth marks that at one time just looked like light brown freckles. But they too started to darken. One birth mark, on my thumb turned so dark that it looked like a black Sharpie had bled on me. Everyone seemed to be intrigued by that one. One morning the resident said, can I see your thumb? You know, you really should have a dermatologist look at this and check it out to make sure its ok. I felt like chucking my rock hard bran muffin at her. Can I please just address one cancer and a time? Everyone who saw it agreed that it was the chemo that was making my nails brown and darkening my birth marks.

As I sat in bed one day, I decided to look at my hands, legs and feet. I hadn’t looked at them in a while. I discovered what looked like brown splashes of paint on the soles of my feet. One of my toes looked as though I dipped it in brown paint.  Also, I had brown “paint” drippings on the palms of my hands. Bizarre. I showed Mom and she said it was the chemo. I have chemo leaching through my skin! 

Now, two months after my last round of chemo, my birth marks lightened and the brown marks on my feet and hands have almost disappeared. My eyebrows and eyelashes have grown back and I have a few centimeters of hair on my head. The only remaining signs of chemo are my brown nails. Each week one striation disappears leaving a perfectly pink space in its place. Soon I will be just pink. Pink and healthy.