Major Surgery & the Road to Recovery

I Put the Christmas Tree Away (thoughts on normalcy & moving forward)

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Christmas Tree circa 2009

I took the Christmas Tree down yesterday. I know, you’re saying, “You took the Christmas Tree down in May? What were you waiting for?”

Well actually, I normally keep our tree up all year long and decorate it for each season. Unfortunately, for the last 2 years I haven’t felt up to changing the decorations with each season so it has sat there with only its Christmas lights on it looking sad and neglected with half of the lights burned out, but I’d faithfully turn it on every night. In a way it became a security blanket for me. To me it represented normalcy even if it wasn’t what it once quite was.

I took it down yesterday. I talked about taking it down for months but yesterday was the day. I don’t know why yesterday was the day I finally got the gumption to take it down, but it was. The poor tree was covered in dust and filthy. It had sat there for 2 years unattended to but loved so very much. It was my comfort item. In a way I’m sad that it’s gone but then I look around the living room and I love the space it being gone frees up. It feels like letting go.

I suppose I should also tell you that I spent the other part of yesterday making my next round of medical appointments; blood work and 2 MRIs in June, follow-up appointments with the oncologist, neurosurgeon, and plastic surgeon in July. I’m coming toward the end of my 6 weeks of physical therapy and I am feeling good. As I’ve noted in my many late National Photo Month posts I am sleeping through the night, which is incredible. I’ve had epic runs of insomnia over the past 2 years with patches of less than fitful sleep in between. But now I’m sleeping soundly almost 8 hours every night and I feel great.

I’m feeling good. I feel like a fog has lifted, like I’ve come out of a coma or maybe a deep depression. The physical therapy has given me the use of my left arm back. I’m feeling stronger. I wish the doctors had prescribed physical therapy of some sort when I came out of the hospital in October 2010 if only to get me moving. The physical therapy is helping in so many other ways than just fixing my shoulder. I feel like I’m accomplishing something. I have a sense of purpose. I feel like I’m doing something to help make myself better.

1 biopsy, 4 CAT scans, 4 MRIs, 5 surgeries, 6 weeks of physical therapy, and 32 radiation treatments (not in chronological order) later I am starting to feel normal. But then a day like yesterday arises; a day when I vacuum and I do laundry and I take the not-quite-itself Christmas Tree down just hours after making my medical appointments and I wonder what is normal? For the next 2 years I will have to have MRIs every 3 months to check if the cancer has come back. It’s been a little over a month since my last follow-up with the oncologist and I’m feeling good so I have moments, days, weeks even when I can sort of forget and let go of the fear and the anxiety and then there are days like yesterday when I face forward, put my security blanket away and hope for the best.

I put the Christmas Tree away and for now that has to be enough.

Surgery #5

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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.

Get Up, Stand Up, Don’t Give Up the Fight (Listening to the Universe)

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Somewhere between raindrops and tears lies the seed from which faith grows.

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.

Serendipity: The Right Words at the Right Time (feeling peaceful)

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Our Lady of Knock

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.

Unraveling: I am not okay

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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