Let me just explain right at the start that what I am about to say (whine, bitch, complain about) in no way changes my gratitude for all that I have nor does it change my positive outlook on my life. It’s just that, although my intellect and spirit can see all that I am blessed with, my emotions have just stuck their fingers in their ears, closed their eyes and gone “lalalalalalalalalala” in the corner. It isn’t listening to all the good news. So let’s review the good news first to see if that helps.
I am finally starting to feel less pain post surgery. It has taken 6 weeks but I am finally turning a corner physically. Elisa is having a much easier time dealing with the chemo each week now that they stopped giving her carboplatin. Her blood counts have been staying up, and she is even growing hair back! Sadie is as amazing as ever. She is talking in little but complete sentences. She is 36” tall and 30lbs of muscle. She can lift just about anything she wants. Her laugh is even louder and more delicious than ever. She is super cuddly with mommy and very gentle around daddy’s boo-boo. Sadie and I have breakfast together every morning again. We sit on the couch together and share a piece of toast over while watching Elmo or Barney. I have spent quality time with more of Elisa’s college friends that have come to help (they really are about the nicest group of women you could ever hope to meet). I have also been able to see many of my friends including my brother and sister-in-law as they stayed with us to help. My surgery went very well. I was on the operating table for a shorter than normal time expected - only 3 1/2 hours. Eighty percent of the tumor had responded to the chemo and radiation treatments so they only had remove the remaining twenty percent. Dr. Matin Weiser is really quite an incredible surgeon, and very nice too. I was out of the hospital in record time. We have continued to receive so many wonderfully kind and heart warming e-mails from all over. Quite honestly, I could go on for quite a while about how many gifts there are in my life, and I have. I do. Over and over.
My emotions just don’t give a shit. They are all over the place. They are favoring the darker more sorrowful side. It has made writing and talking to people about what is going on difficult. It is hard to not want to be or feel the need to be happy around those that you love and want so badly for you to feel better. It is difficult to no be able to do this to pull myself out of the funk. I keep feeling the weight of the year, the weight of the cancer, of my cancer, of Elisa’s cancer, of Sadie’s parents having cancer. In the beginning, it was almost easier to deal with. Things were bad, but they were busy. Everyday was a new test, a new doctor, new news, more information to think of and to process. It kept the mind and body occupied. You are sprinting at the beginning. Here’s the thing, Elisa warned me “it’s not a sprint, it’s a marathon.” Plus with Elisa’s type of cancer, there is no finish line. They will never refer to HER2 positive metastatic cancer as in reemission. She will have treatment for years. I have just hit that wall (all you runners out there know what I mean). It has been almost a year for me and I can count on one hand the number of days that I have actually felt physically well. It has worn me out. I am also admittedly not a fan of having shit continuously pour out of a hole in my abdomen into a poorly designed plastic bag. On Friday, August 25, I will be starting chemo again. I get to add a second object hanging off me, my 48 infusion bottle of chemo. I worry about what all this is doing to Sadie. She is so aware and tuned into her surroundings. She feels and senses everything. The first thing she says in the morning is “Daddy, shirt on!” She wants me to cover up my “boo-boo bag.” But it isn’t because she doesn’t want to see it. Heck she asks to see it all throughout the day and laughs when I show it to her. I think she senses my embarrassment about it. She also likes that she skinned her knee and has a boo-boo too. I think she wants to have what mommy and daddy have. Ever since she scraped her knee she likes to point out all of our injuries in turn, mommy’s then daddy’s then her own. It’s amazing and heart breaking. But perhaps this just means that she will grow up to be a caring, empathetic person who wants to help others. Maybe she will cure cancer because of all this. I just wish she could learn the lesson in a different way. It’s a hard lesson. The day to day grind of it....it’s relentless. It’s the bad sleep and crazy dreams from the pain medicine. It’s the 2 times during the night that you have to stumble out of bed to try and empty an over full bag of shit without getting it all over the place. It’s the limited diet that you can eat, again. It’s the not being able to help out around the house, or pick up your baby when she is crying at night. It is all the little things. It doesn’t let up. That is what is so hard about the cancer for me. It is as if a friend of a friend needed place to crash for the night but then moved in without asking, ate all food, never cleaned, used your toothbrush and then used the toothbrush you bought to replace the first toothbrush. However, it will get better. It is getting better. It really has to.
But let me end on some good news. It was six weeks that I wasn’t allowed to pick up my daughter do to the surgery. Sadly, she just stopped asking after the first week and that killed me, but I am cleared to pick her up now. It’s a very bright spot in my day, getting to hold her when she comes home from daycare.
This was the post I was going to post about three weeks ago. See the next post to understand why it all went to hell.
PS-I don't mean to create a cliffhanger but since blogs are read "backwards" I want everyone to get a chance to digest this chapter before moving on. We'll post again at the end of this week or next weekend.