I’m home. Thank you for all of your good thoughts and prayers. I got home around 3pm. This was my first unsatisfying experience with Cooper. I’ll never go back to the surgical center. The people were very nice but they do thing differently at the surgical center. There was no sedation before surgery. I had to walk to the operating room >insert major meltdown here< where they did not have a step stool high enough for me to get on the operating table. In my hysterical state I had to pull myself up on the table and schooch and schooch ’til I was up on the table. I was awake a long time in the operating room with an oxygen mask over my face and no matter how many times I told them I was claustrophobic they just kept putting it back over my face. My surgeries at the hospital were by far better experiences.
I have a good friend Angel, who I’ve written about here quite a few times over the years. She believes that you have to listen to the universe. She believes that it throws pebbles, then rocks, then boulders until you do listen. I’ve been trying to listen but sometimes I don’t want to hear.
It’s been a rough 16 months with more months of surgery and recovery and doctor visits to go. About two weeks ago on Thursday morning I just fell apart. I made myself physically sick and had to have Chuck stay home with me because I wasn’t okay. In the 16 months since this all began I’ve never had to ask Chuck to stay home with me because I wasn’t able to stay by myself. It was humbling and embarrassing.
Then last Sunday we were unexpectedly in a different church than we normally go to for mass and it was as though the priest was speaking his homily directly to me he said, “Don’t be bitter,” “Don’t be afraid,” “Trust God.” Tonight we were back at the church we normally go to for Sunday evening mass and the priest spoke about how sometimes we have to go through the same things over and over again in order for us to put ourselves completely in God’s hands. He said that giving up is the devil’s end game.
I think anyone who knows me knows that I’m a control freak. I need to be in control and when I’m not I fall apart. I honestly wish that I had the faith to just put myself in God’s hands and know that whatever happens is his will. I’m not that person. I’m not even going to lie to you and say that I pray to give up my worrisome ways. I’m still desperately trying to control the universe, clinging with both hands to the rope. The freak out two Thursdays ago was about me being weary and not wanting more surgery and the upset surrounding the scheduling process and me not being happy with the way things went and the date being changed. I fell apart in spectacular fashion.
Since last Sunday’s homily I’ve been trying to not feel discouraged and I’m still trying to make peace with the scheduling and that I’m having yet another surgery. I’ve had good days and bad days and nights of anxiety in anticipation of this latest surgery. I don’t want to be cut into again. I don’t want to be attached to a two and a half pound wound vac for 9 days. I want for all of this to be over. I’m trying to have faith and I’m trying to take each day as it comes. I’m trying not to be discouraged. Like I said, I’ve had good days and bad days.
Tonight, one of the Super Bowl commercials was an ad for Chrysler titled Halftime in America. Clint Eastwood gave voice to the words, which again I felt were meant just for me to hear, “We find a way through tough times, if we can’t find a way we make one,” “It’s halftime in America and the second half is about to begin.” Okay, point taken Universe. I get it. It’s up to me to get through this. Get off the floor, have faith, keep going. This is just another leg of this journey, which right now is not meant to be over.
I’ll work on having faith in God and my doctors and that for right now I’m where I’m meant to be. I’ll keep my ears and eyes and heart and mind open. I’ll try to learn the lessons I’m meant to and take things as they come.
Do you believe in serendipity? Do you believe in just being in the right place at the right time? Feeling at the end of my rope on Friday I wondered what the universe is trying to teach me. Tonight we went to mass in the city. Lately we’ve been going to Sunday night mass at St. Mary’s but tonight we were in the city. After dinner we were going to go to mass at the cathedral but didn’t want to wait the extra 30 mins so we made our way to South Philly to St. Nick’s. It’s been a rough week. I’ve been angry and anxious and upset and feeling out of control. Tonight’s homily was about how we’ve all been through hard times and we’ve all asked, “why me?” The priest said, “Don’t be bitter,” … “Don’t be afraid,” … “Trust God,” “Jesus is always with you.” It’s like he just knew I’d be at that mass. I was so moved and inspired. So I’ll gather my strength and pray that this will truly be my last surgery.
I guess I spoke too soon when I decided that medical news and medical drama would not dominate Soapboxville this year. As it turns out portions of the skin graft from December are not healing well and so I am scheduled for my 4th skin graft in early February.
I saw Dr. Matthews on Monday and she decided to move ahead with the skin graft. I told her that I have a bunch of doctor appointments in February and I didn’t want to miss any of those. We settled on a date, which worked for both of us and I went on my way. On Wednesday the phone rang and it was her office telling me my surgery was scheduled for a different date. I said, no it’s scheduled for x date and the scheduler said, no it’s scheduled for y date. Things went back and forth over 2 days and it was revealed that she will be away at a conference on the originally scheduled date.
I tried to move the surgery to a date that allowed me to make it to all of my appointments and attend Chuck’s grandmother’s 90th birthday party but it was not to be. There are no openings for surgery that would not mean moving surgery to March and so I spent today moving all of my February appointments to March and sending an e-mail to Chuck’s uncle to let him know that I will not be at the party.
I am not okay. I’m clinging to sanity with a rapidly fraying rope. I’m exhausted and tired and overwhelmed and depressed and I just want to lie down and sleep for a while. I don’t want to have to worry about surgery or upcoming doctor appointments or being evaluated by the neurosurgeon or the dermatologist. I just want to sleep. I’m too weary to saddle up this time.
I’m really feeling like this will never be over. When I asked why this is happening to me she said the area had been radiated during the treatments. In November when I asked if this would continue happening and where do we go from here if the December surgery wasn’t successful she said she was trying to avoid me having to have a 10-hour surgery by performing the 3-hour surgery in December. Well here were are, the December surgery has areas where the skin graft didn’t take and I’m going in for yet another skin graft. This surgery is minor like the one in March of last year but I’ll be attached to a wound vac for 9 days following surgery. The wound vac is 2 and half pounds. (see it here: http://www.kci1.com/KCI1/activactherapyunit) This means I can’t go anywhere, I can’t do anything. I’ll just be at home attached to a 2 and a half pound unit with yet more skin removed from my left leg and stitched to my head.
I’m not okay. I don’t know how else to say it. I always said I’d be honest in telling my story here and this is where I am right now. I wasn’t up to the surgery in December and I went into it reluctantly. I didn’t feel strong enough or emotionally able to go through surgery again. I was unaware of the seriousness of the surgery. I had no idea that I’d wake up attached to a wound vac and a morphine pump with a drain in my back. I was told I’d be in the hospital 2 or 3 days in actuality I was there for 6 days. This surgery is outpatient. I’ll be home the same day. In fact it won’t even be at the hospital. This time I’m being operated on at the surgical center. But again there are no guarantees that this time is the charm. There are no answers. There is no definite end. There is just more surgery and more uncertainty.
I’m 15 months in now and I don’t know what the universe is trying to teach me. I don’t know why this keeps happening to me. I’m grasping desperately at normal and okay. I’m trying to be strong and stoic and brave. I’m trying to be positive and optimistic but each setback, each bump in the road, each change in schedule unravels my rope just that much more. I’m really close to falling apart and right now I have no idea how I’m going to make it through this latest setback. I’m weary.
Thanks for reading. I love you all.
With much love and great affection,
~ Carol Anne
Well my hiatus from personal and medical posts was short lived. I’m scheduled for skin graft #4 next week. Some of my skin graft from December didn’t take so I’m going in for #4.
I asked Dr. Matthews why this happened and she said it’s from the radiation treatments. I asked about vitamins and she said the multivitamin I already take is fine. So, here we go again.
It will be out patient. The surgery is going to be done at the surgical center instead of the hospital. She wants to send me home with the wound vac (http://www.kci1.com/KCI1/vacatstherapysystem) that was on my head while I was in the hospital in December rather than the Snork dressing from last March. I don’t really want the wound vac but she recommends it. From what medical personnel at the hospital said in December it’s the better option, but it’s heavy and cumbersome and uncomfortable. I have a decision to make. If I don’t want the wound vac she won’t put it on but then I’ll be Snorkified, which means a sewn on dressing and perhaps I’ll risk less healing.
A big drawback to this surgery is I’ll have to interrupt my physical therapy just as I’m really making progress. I can tie my scarf on my head again and I’d hate to regress. Of course my head is going to be attached to a wound vac so I guess I won’t be wearing a scarf on my head any time soon.