Punchy Mommy Believes in Life

How I evicted the worst uninvited overnight guest and took back my life
April 19, 2013

The hardest decision of my life

Poll: How would you go about making the hardest decision of your life? A decision that is literally life or death?

Here’s how I would answer:

1. Research and statistics. Mom and DH were superhuman when it came to researching studies, articles, and statistics about PMBL. We needed, no were desperate for, information. They read each article front, back, sideways and diagonally. They talked about it with colleagues on each coast. They debated with each other. We met face to face with the people who wrote the articles, ran the studies, and knew the research as well as, if not better than, we did.

2. Cried about it. I did a lot of this. I’m not sure if it was actually helpful in the process, but that’s about all I could with the paltry amount of  energy I had.

3. Talk, talk, and more talk. We had endless conversations analyzing what-ifs.

4. Read blogs about other people’s experience with radiation vs. no radiation. Again, not totally helpful, but I had to fill the time with something.

5. Considered my genes. Radiation increases the risk of secondary cancers. Some radiologists claimed that the increase was only 3-5% more than the general population. Other oncologists thought it was more like 30%. The fact that I’m young puts me at a greater risk because I have more years to live during which these cancers could come about. After meeting with two radiologists, it was clear that my heart, lungs, and breasts would be radiated. The radiation field must be as large as the tumor was originally and my tumor was large enough that all of my highest  priced real estate would be radiated. Oh, and I can’t forget that both of my grandmother’s had breast cancer.

6. Met with the doctors. In some ways, this was the worst, most confusing thing to do. Here’s why:

My Bayou oncologist said I’ll support you with whatever decision you make. I’m curious to see what Oz will say. Ok, well that’s not helpful. Later, when he found out that my PET scan after six cycles of chemo was positive according to the Deauville Criteria he said, well let’s just radiate to make sure, you know as an insurance policy. An insurance policy against what? To get cancer in the future? Thanks but no thanks.

The Bayou radiologist said, I’ve treated five patients with PMBL and I’ve radiated all of them. Of course those patients had RCHOP not REPOCH. I don’t have any patients who were on REPOCH, I don’t know about that protocol and I haven’t read the literature. Great.

DH’s colleagues in the Garden of Eden said not to radiate. They treated 17 patients with PMBL on REPOCH and none of them had radiation and they are all in remission.

My oncologist at the Cancer Epicenter of the South said If you were my mother or daughter, I would radiate. But what about the articles from Oz? What about those statistics? Those studies aren’t old enough and they aren’t good enough. There isn’t a proven track record yet. I just had a patient with diffuse large b cell lymphoma who was on REPOCH. We decided not to radiate and here he is six months later relapsing. But diffuse large b cell lymphoma is different than PMBL. We cried. The studies do not claim to have as high of a remission rate for diffuse large b cell. I’ve lost a few young mother’s with this disease, he said. Once it comes back it is very very hard to treat. I have a few cases right now where the patients has relapsed and they are not salvageable. Not salvageable? What the fuck does that mean?

The  radiologist at the Cancer Epicenter of the South said I would absolutely recommend radiation in your case. Have you radiated anyone who was on REPOCH? No. Do you know about the studies from Oz? No. But, I do know of an on-going study in Italy that was comparing REPOCH patients with and without radiation and they are just about to close the wing of the study of patients with REPOCH without radiation because the relapse rate is so high. This peaked our interest. DH pushed her on the details, of which she couldn’t remember. She said she would email us the article. DH spoke with his colleagues at the Garden of Eden, no one knew of the study. The radiologist later recanted, stating that the study was on RCHOP, not REPOCH.

The Wizards of Oz said, we would not recommend radiation in your case. The statics show that you will not need radiation. We prefer the wait and see approach whenever there is a questionable scan. We believe that your scan is most likely negative but rating it on the Deuaville Criteria does make it positive. You can always do radiation at some point down the road if you needed it. In fact, a few of our patients did have remaining masses that were more positive than yours is after REPOCH and we radiated them and they are now in remission. We believe that you can reach remission with radiation as well. The secondary cancer risk is very high and it’s not a risk that we believe you should take. 

This was the hardest decision of my life. In the end, with all other options exhausted, I looked inside. I asked what is my body telling me? How do I feel about this? The idea of radiation never seemed to fit. Some feel that radiation is the most conservative route because it will insure that the tumor won’t come back. While it is technically true that radiating my mediastinum will likely prevent the tumor from coming back in my mediastinum, there is a chance that a tumor could appear somewhere else in my body if it really wanted to. In some ways radiation felt like I was robbing Peter to pay Paul. Sure, it would prevent a relapse of PMBL in my chest but it may give me breast cancer, lung cancer, and severe heart conditions like thickening of the arteries. In the end, I couldn’t ignore Oz’s statistics and experience with REPOCH and PMBL. I couldn’t ignore my feelings about radiation. And so, that’s how I decided that at this point in time, I would not have radiation. I don’t know if it’s the right decision and there may have been a better way of getting to this point. But I think I made this decision with as much care and reasoning as I could.  In the end, without anything else, I’ve decided to surrender and to follow to my heart.

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April 19, 2013

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.

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