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.
We are all still here, we are all still standing, and 2012 brings with it the promise of hope.
A Little Background Info
When I was in the 8th grade I fell and sprained my ankle. Come New Year’s Eve at midnight mom had me stand up on my own two feet without the crutches because she didn’t want me to start the new year on the crutches.
What can I say? We’re a superstitious bunch.
Although we are stay-at-home folks on New Year’s Eve I always have us standing up in street clothes as the ball drops in Times Square (no jammies ‘til after midnight). I’ve added my own lil idiosyncrasy to the standing tradition; we have to go outside right after midnight even if just for a moment. Why? I don’t really know. I suppose to me it signifies health and ability.
The 365 Days of Carol Anne Project Comes to a Close
Well kids, it’s day 365 of the 365 Days of Carol Anne project. Today brings this yearlong project to its conclusion. All totaled, I posted 318 photos over 365 days, that means I posted 87.1% out of a possible 100%. Not bad. Not perfect, but not atrocious. I’m both disappointed and proud of this statistic. It’s not perfect. It is however the most committed I’ve ever been to any blog project since Soapboxville began.
I’d be lying to you if I didn’t admit that I’m more than a little relieved that this project is drawing to a close. I’m also a little sad to see it go. It’s not always easy to take an honest look at one’s self but it also gave me purpose, it gave me something I NEEDED to complete each day. It kept me sane, it kept me honest, it offered me a place to open my heart and mind, a place to express myself. I’ll miss it but I’m ready to move on from daily introspection.
Now, on to the hard part …
I started this project as a way to learn to love myself on the outside. In this particular endeavor I failed quite miserably. I’m still rather self-conscious. I’m especially self-conscious of my seriously messed up and missing teeth. This horrifying problem has nothing to do with my cancer. My hideously messed up and missing teeth are from a lifetime of soda drinking and an intense fear of the dentist. I will eventually have to address this problem. I’m a little braver now but there is a mountain of medical bills to be paid before we add dental bills to the ever-growing pile.
On the positive side of the equation I don’t hate the very thought of the sight of myself anymore. Yes, I’m bald. Yes, my teeth are a hot mess. Yes, I’m overweight. At some point during these last 365 days I found compassion for myself. I don’t know if that’s the right word to explain it but I don’t loathe my reflection in the mirror anymore. It’s a start, I guess. When I look at myself now I can say things like, “I like the shape of my eyes” and “I like my smile” and “I have nice skin”. I suppose then this project has not been a total failure. I’m still a work in progress.
A Funny Thing Happened on the Way to the Blog Post
Although this started as a way to learn to love myself on the outside I may have instead learned to love myself on the inside. Before I got sick, before the 4 surgeries, before the countless doctor appointments and medical tests I felt small. I did not have a voice.
At some point in my life I just accepted that I was not as smart, pretty, or popular as others around me. I don’t know why. I don’t know why I’d let anyone make me believe I was less than anyone else, but I did. I’ve spent my life trying to blend into the woodwork, trying not to stick out, trying not to be heard.
I grapple with a fear of success that is much bigger than any fear I harbor of failure. It was not until 2 weeks ago when I started rereading this year’s blogs that I saw myself clearly for the first time in a very long time; perhaps ever. I am not weak. I am not defeated. I am strong and I am human, I’ve stumbled along the way, I’ve fallen apart and put myself back together on several occasions but I did not give up. There were days I wanted to, but with the love and support of family and friends I picked myself up and soldiered on. I’m a survivor. By God’s grace and the power of prayer I am cancer-free as I write this to you.
I AM ALIVE
I AM CANCER-FREE
I AM ON THE ROAD TO RECOVERY
I HAVE FOUND MY VOICE
I AM NOT WEAK
And so my dear ones 2011 and the 365 Days of Carol Anne project draws to a close here. I am putting 2011 square in the win column. Thank you all for accompanying me on this journey. I couldn’t have made it here without each and every one of you. I love you all. Here’s to a healthy, happy, beautiful 2012 for all of us!
With much love and great affection,
~ Carol Anne
Today another leg of the journey came to a close, my home care nurse discharged me from her care. The stitches are out and thankfully I am healing well so Chuck will once again be taking care of my wound care. It’s not a big milestone but a milestone nonetheless. I’ll take it!
I’ll be back tomorrow with my year end wrap up.
~ Carol Anne