It’s 6AM and I’m writing this from the common area of the 10th floor at Sloan. Jen was admitted tonight. When transport rolled her into the room I felt a strange comfort that’s been bugging me; since the end of April we have spent over 2 months on this floor.
In the last week Jen’s exhaustion has been increasing and she’s felt disoriented. Today I talked with our oncologist and she felt it would be best if we brought Jen to Urgent Care. So here we are, back in our all too familiar second home.
Jen is sleeping and the doctors will be around anytime between 7-11AM. Not sure who the attending oncologist is – hoping that he or she leaves the ego at the door…
In March of 2008 Jen had a double mastectomy. I said I love you and watched her walk down the hallway to the operating room: scared out of her mind but full of Grace. I walked to the bathroom and cried.
I sat in the waiting area with two of my brothers, a sister, Jen’s parents and sister and a group of friends. I don’t remember what we talked about but it didn’t matter: while we talked, parts of Jen’s body, parts so important to a woman, were being removed.
A staff member finally called out “Merendino.” Being the youngest of 11 kids, I was used to someone else, an older sibling or parent, answering that call and passing the info on to me. Then it hit me, it’s time to be a man. I walked to the counter, proud like my dad, and was directed to a phone with the surgeon on the other end of the line. Sweet Dr. Heardt told me that everything went well. Jen was recovering and in a short while I would be able to go back and see her.
When I was finally allowed to see Jennifer she was in the recovery room, dazed and full of pain meds. I remember the smell that has now become fixed to my brain. It would still be some time before Jen would go to her room so I went back to the waiting area and checked the clock every other minute.
Then I got the word – Jen was being taken to the 10th floor, room 1024B. I wanted to run to see her barely able to walk with my new naive manhood.
Now, just over 3 1/2 years later, here we are on the 10th floor. Jen has slept most of the day and my biggest fear is now reality. I am numb, lost and hurting. My best friend, the reason I get up in the morning, clings to life while I sit in my chair-bed and stare.
Been a little bit since I’ve posted – been pretty busy here. Seems like there is always something that needs to be done in our apartment – cleaning, organizing, bills, etc. I think I’ve caught up for a minute…
Jen is feeling better and each day has been an improvement. She gets chemo on her 40th birthday, Tuesday the 6th. I asked if she wanted to change the date but she wants treatment. Not looking forward to the side effects as it’s been nice having her awake and alert. That said, I’m hoping that the chemo is beating the tumors up.
A handful of my photos are featured on this website – http://www.socialdocumentary.net/index.php – I’ve included text with the images.
Also, the closing celebration of my exhibition will be on 12/16 at The 78th St. Studios in Cleveland, OH – http://www.78streetstudios.com/ – I will hang 3 more images for the closing. If you can make it, I’d love to see you.
My alarm(s) went off at 3 and I got up to make a snack for Jen. Her sugar has been low in the morning so she needs to eat something in the middle of the night. The cancer on Jen’s liver is compromising its ability to regulate sugar as efficiently as it should.
It’s tough to get Jen to eat because chemo is wrecking her appetite and not many foods sound good to her. We settled on a smoothie because it has worked in the past. Jen drank about 1/3 of the smoothie and started to go back to sleep. Then she tried to get to the waste basket. Didn’t make it in time and she threw up. God my heart aches when I see her like this and it isn’t like she has the flu or an upset stomach and got sick. My mind races to a million places at once.
When she was finished I got her to the shower and cleaned her up. I changed the sheets as Jen brushed her teeth.
We were about to go back to the bedroom and Jen got sick again. Once more my heart aches and my mind races.
It is 6:15am.
I flew into town yesterday to hang the show. My brother Dave picked me up at the airport and I was able to spend a few minutes with his wife Aimee and their 3 boys. Was great to see them.
Dave and I drove to the gallery and met up with Matt, who is printing the show. Matt is the spark behind this show and I’m very thankful for all of his help and encouragement.
We got the photos up and it was really intense to see 40+ images all together, beautifully printed and framed (thanks PJ!).
Eric Mansfield from WKYC-NBC came by to do an interview and it was pretty emotional for me, answering questions about what Jen and I have gone through the last few years. Eric is an amazing person and a class act.
Being away from Jen has been tough. She had chemo Friday and it’s taking a big toll. She’s sleeping a lot and her blood sugar is down. Not being able to check on her whenever my heart sends the signal is tough. She’s in good hands, her parents are in town, but I am still anxious to get back to her.
Today we will do a little more work to the gallery – plans changed a bit though as there was a huge fire accross the street and power is currently off in the building. Always something…
After that I’ll go to see my parents…excited to see them.
I woke up to find 2 emails that couldn’t have come at a better time. The first message came from a musician friend of a friend and contained a song that the friend wrote. The song was inspired by Jen, me and my photographs. I knew in my gut before even listening to the song that it would be special. The thought that our story inspired someone to write a song means so much to me. I listened to the song when I was on the train and it is was all I could do to hold myself together…it is beautiful.
The second email also came from the friend of a friend; the sender’s wife is battling a recurrence of cancer. He told me that he is inspired by my strength and that if there is anything that he can do just ask. He did something amazing by sharing his thoughts, something that helped get me through the day.
There is an older couple that has been at the hospital even longer than us. I see them walking the halls every day and my heart grows heavy. After we ate dinner, the husband saw me in the hallway and told me that when they see us in the halls his wife tells him, “if you want to see the definition of a husband,” then she points at me. I was completely stunned. Of all the things that anyone has ever said to me, that is one of the most kind and special. I will never forget her words.
I beat my alarm to the punch again. Not crazy about the dreams I had, which woke me up a few times only to resume as soon as I fell back asleep. Trying to keep the anxiety at bay.
Jen had chemotherapy yesterday so today will hopefully be a quiet and restful day.
This is brutal. I cannot explain what it’s like to see her in the hospital bed, suffering. Everything I’ve ever thought to be true or real is now challenged – what matters?
So it’s been a few days since my last post. I’ve been really beat, this current hospital stay hit hard. This is our 4th hospital stay of more than a week since April 29th; the emotional and physical toll are heavy. I’ve been doing my best to get rest and eat healthy so I can give my best support to Jen.
We are hoping that she will be released this week. Dealing with the pain is so tricky because there are so many pieces to the puzzle. Methadone works well for most of the pain control but it can mess with Jen’s heart; oxymorphone is good for breakthrough pain but it’s in IV form so Jen would have to take an unrealistic amount of pills (or come home with a PCA pain pump…been there, done that- hope to never see one again). Add in the Fatigue from whole-brain radiation for good measure and upcoming chemotherapy (Friday) and you get a glimpse…
Through all of this, Jen still smiles bright when I walk in her room. She’s tough as nails.
The last few days have been relatively calm at the hospital so I’ve been there less. One good thing about that is I’ve been able to come home earlier and take care of things like medical bills, insurance stuff, home life, exhibit details, etc. Plus I’ve been able to catch up on much needed sleep.
Jen called me a half hour ago, about 6:45am, to tell me that she’s running a fever and will be getting a chest x-ray at some point today. I adjusted my alarm to an earlier time and told myself to think about calm things and stuff I’m thankful for (a few years ago my dad told me he does that when he can’t sleep) because I need to rest and be strong…not happening. My mind is racing and aside from the 24 lb cat near my head there is nothing calm going on.
Coffee soon. Bills, emails, bank, post office – everything needs to be an efficient, well-oiled machine so I can get to Jen.