I know I suck but here’s where I’ve been…

Last week I went with my mom to the hospital to have a CAT Scan done of her chest and abdomen. The idea was to check in to see how the cancer responded to the first two rounds of chemo. If the tumors in my mom’s lung and adrenal gland shrank considerably then there was a possibility that surgery could be moved up. Otherwise, her oncologist, Dr. Miller, would need to adjust the chemo cocktail appropriately.

The latter part of this check-in has been on the table from the start---the possibility that the drugs would not work and would have to be changed---but I don’t think any of us wanted to hear that part so we were all taken aback when the Cat Scan showed very little change in the size of the tumors. (I guess when chemo is working, it really works.) Dr. Miller, a woman whom we all like more than I think any of us expected to and trust to the extent that one can trust the person who is issuing the poison orders, said that though the tumors have gotten slightly smaller, it was “not a home run.”

So the plan is changing, starting with the chemo cocktail. This Thursday she will undergo her first round of treatment with a stronger (read: harsher, more toxic, more terrible) med. The fatigue and nausea that she endured with the first med will now be upped to heavy nausea, probable vomiting and definite hair loss. This new drug is so toxic, in fact, that they will have to pump her with fluid and keep a close watch on her kidneys. At this point I think she is planning to spend the night after treatment at home but the option of an overnight at the hospital is there so that she can be monitored closely. With my dad being a doctor (and my playing one on this blog), we’re hoping we’ll be able to help her through it in the comfort of her own home.

After two rounds of this chemo my mom will have another CAT Scan and Dr. Miller will assess things again to see if surgery is still an option or if she will try radiation instead. According to Dr. Miller, the precision of radiation has come so far that it’s akin to surgery and a chemo/radiation combination seems to be the future of lung cancer treatment. During the appointment she at first said that surgery was probably off the table but circled around and eventually said that it may still be an option. In truth, I’m just sort of confused now. I can take worry, I can take fear, but confused is something I do not endure well and my frustration showed itself as tears.

Reviewing the few notes I managed to take during this last appointment I saw that I quoted Dr. Miller as saying this: “You’re not gonna die.”

Glad I caught that at least.

She said we’re learning more about this cancer. She said it’s not a failure that the first plan didn’t work out as we hoped it would, it’s just time to change courses. “You’re not going anywhere,” she told my mom. If she thought otherwise then she would be sending my mom to hospice and not for chemo.

These are promising words. I have to believe there was no smoke blowing. Still, all this news was overwhelming. Over the past six weeks my mom had voiced her fantasy, her deepest hope, that they would go to look for the tumors and that they would be gone. I loved that she was thinking this way. I was thinking that way, too. Maybe if I cook her enough broccoli the cancer will disappear, I thought. All we need to do is stay positive. Pray. Visualize her healthiness. Believe.

My dad worried that such thinking would result in great disappointment. It’s completely understandable that he would be protective of my mom in this way but I don’t think that if she had guarded herself with cynicism (or realism for that matter) it would have been any less difficult to receive such news. The hope kept her buoyant. I love that she is brave enough to feel hope.

But it indeed was a great disappointment and this past week was the hardest week yet. Many tears marked the arrival of this new level of intensity. And, of course, we are all dreading this next phase of harsher chemo. However, the tumor in my mom’s lung is blocking the bronchus such that her lung is not getting adequate oxygen so there is no choice but to shrink it. On she goes, my mom.

So that’s what has been happening.

Anais Nin said, “We write to taste life twice, in the moment and in retrospection.” Lately, I feel like I’ve had three tastings. The one I’m living, the one I’m trying to get down for myself---the notes jotted down hurriedly when I first wake up at my parents’ house and lift the shade with hopes of seeing the sun just starting its red roar across the sky---and then the version I’m writing here. A cleaned up version, held tighter, no emotion seeping out. The presented version. Facts. Lungs pained as I hold my breath to type.

It’s exhausting. It’s hard enough to feel it once. It’s hard enough to get it all down once. It’s inefficient. I’m missing things. The only way I can figure to do this---if I still want to do this which I think I do---is to just do it. No more editing. Show up. Spew.

The main thing I’ve been avoiding is the subject of fear. I did not want to admit its prevalence. I still struggle with a flawed logic that if I allow fear in, my hope is somehow compromised. I understand that I can feel both things at once but to write it out loud is different. I would tattoo a brave front on my face if I could. Also, there was this: I didn’t want my mom to know I was scared.

After this week though, the word is out. She knows I’m scared. I know she’s scared. We both know my dad’s scared. (I don’t totally know what my siblings are feeling but I’m sure there’s fear there, too.)

And also we’re all hopeful.

It’s this trying to protect each other thing: Don’t be sad, don’t be scared, don’t worry, I’ll take it for you. I’ll hold mine so you’re not reminded of yours. If you see only my hope, you’ll believe harder in your own. That’s where I was coming from when it came to my mom. But I think over the last week we’ve come to admit that we’re all just gaping wounds of fear and love and it’s better to feel it together than to be afraid and alone. This doesn’t mean that going forward there won’t be the stuff of “being strong” for one another---I’ll hold back as many tears as I can rather than have my mom see me cry if I can help it---but we’ll know to be honest when we need to be.

Same goes for this blog. I’m sure I won’t totally shelf my game face but I can’t just speak of forcing vegetables and unceasing hope anymore. There is more to all of this and rather than running away and hiding all week, I’ll try harder to go there if it feels possible. (Otherwise, I’ll write a note saying that I’m running away and hiding.) When I started to write about this---when I start to write about anything---in addition to my inclination “to taste life twice,” I always hope for relatability and connection. But how can I expect someone to relate---to have someone see their own fear reflected back---if I’m not being honest about my own? I’ve been reading all sorts of blogs lately from people documenting their experiences with cancer and they have been tremendously helpful to me. People not numbers. People not science.

But therein lies some of the problem: It is not my cancer. Sometimes it feels like mine. (I bet my dad would say the same.) Sometimes I just so wish it could be mine. And though my mom has given me permission to write through this it still sometimes feels like an invasion of privacy. It feels like an invasion of privacy to even talk about it. There is an odd tendency towards secrecy that I feel surrounding all of this despite knowing as I do that this is a time, perhaps more than any other, to reach for friends and family. (Not my strong suit, I suppose.) And I also know that to deny what is going on right now would be to do myself, my mom, my family a disservice. This is real. To not accept it as such would be to miss the real stuff of life.

So, I’m going to try to paint a more accurate picture. Fear and hope, sadness and laughter. I just ask that you all still focus on the hope and add yours to the pile.