One Day At a Time...

Happy Saturday...

<-The picture is a painting by Alfred Gockel entitled "Perfectly Balanced." I found some of his paintings on Allposters.com His work is beautiful! Something about it speaks to me. I think I will purchase some of his prints at some point, after all this craziness. I will add a link to Allposters, hopefully to his work. Check it out...it is beautiful.

On today's blog I want to say hello to someone I have met through a PVNS discussion forum... whipptcloud is the username she uses on the forum. When she was younger she was a professional stunt woman, very athletic. She has now had PVNS for years and at 53 years of age, doubts she is going to live to see Christmas this year. I can't begin to tell you her story, because I will not be able to do it justice, but it is a scary story. She has been battling it for a long time. For her, PVNS not only recurred, but metastasized and travelled to other areas of her body. She has reached a point where doctors are unable to, or won't do anything to try to help. I thank her for sharing her story on the forum because it is, I am sure, hard for her to put it out there...maybe it makes it even more real to her...

Scary stuff.

When I had my appt. in Boston, my dr. seemed optimistic that after I recover from this surgery, I will be able to do whatever activities I want to do. He did say that PVNS has a high recurrence rate...and I emailed him last night to see, based on his experience with this condition, if he feels my case is one which will recur. I have not heard back from him yet, but will let you all know when I do. I also asked him if he has a guesstimate on how large the tumor is. My left knee is at least 2 inches bigger than my right knee...(according to measurements taken at PT.) and I wonder how much of it is swelling and how much of it is tumor.

I do know that I will be very pushy when it comes to following up on this disease. I want to be checked regularly to see if there is even a hint of recurrence. At this point I have had three doctors, a physician's assistant, and my physical therapist tell me that my knee is healthy....structurally at least. My bones are strong and so are my ligaments. Some patients with PVNS are not that lucky...the tumor can cause bone degeneration with drastic results. So I am determined to have my knee checked regularly (and other joints if I suspect ANYTHING) to try to preserve my "healthy knee." It is so hard for me to believe that my knee is healthy, given how it feels and how it has restricted me so much.

Whipptcloud has become very knowledgeable about PVNS and on the forum offers a lot of information and advice to others on there. And while her story is scary... it is real, as are the stories of other people on the forum who are suffering with PVNS or friends of people who are suffering. That's another reason I wanted to do this blog. I want people to read about this... I want people who have PVNS to not feel alone. This effects 1.8 in a million people. So it's not like there are other people in my community who have this and who can fully understand.

Maybe I have done too much reading about it online. I understand that the internet can be an amazing tool, but that sometimes it does not offer optimistic information. But, as I have said on here before, I have often felt consumed by this disease. It is present in my mind ALL the time.

I wake up throughout the night and try to reposition myself and wonder if tomorrow will be a decent day or a bad day. When I first wake up I assess how my knee feels and how quickly I will be able to get going in the morning. I wonder if my first steps are going to be painful or really painful...and make sure I have something close by, like furniture, that I can lean on when I first stand up. Last weekend I went to Sara's house...she was planting some flowers in her garden and I had to sit on my ass and watch her because I knew that I couldn't kneel, couldn't stand on my knee long enough to help her...so I sat and watched her and talked of course. I had a GREAT time visiting with her, but I just can't get away from this. At work... whenever I have to travel to another part of the school I wonder how much pain I will be in by the time I get to the destination. I've gained a lot of my weight back and wonder if people think that my slow speed in the halls is because of my weight and feel sorry for me. Not everyone in my building knows what I am experiencing. They all knew that I had one surgery in March and everyone assumed that my problem was fixed then... and it's not like I want to put up a huge flyer explaining to everyone what is going on... partly because I don't want to talk about it will everyone I work with....ironic that I am blogging and say I don't want to share it with everyone... but at work it is different. There are some people who I am close to at work who have been sooooooooo supportive. But I don't want my co-workers to feel sorry for me every day... don't want anyone to feel sorry for me...Maybe that doesn't make sense....if I am putting it all out there, what do I expect? I don'tknow...

Many people know that my father has suffered from back pain for years... he has problems that cause pain, instability, and a lot of other issues. Dad has dealt with it since... well... I think since I was a sophomore in high school... which was 1991. Dad...I don't know how you have handled it all this time. I can at least get into a reclined position that is comfortable for me... but I am sure with his back...even that is challenging. I have even more respect for what Dad endures...and for Mom who has been there with him all the way...and because, for both of them, mentally I am sure it takes its toll. There is no escape from constant pain....

I have thought about checking into support groups for chronic pain...but I am not ready to say that this is not going away... and in my mind I see those groups as being for people who have pain and will have it for their entire lives. I also have thought about acupuncture...but think that I am going to hold off doing any other kind of treatments until after surgery.

I am hoping to enjoy the few weeks of summer I will have before my surgery. One of my favorite things to do in the summer is to go camping and kayaking... and I am looking forward to doing that before I have my surgery, but it worries me at the same time. I am so afraid that kayaking is going to be really painful. that getting in and out of the kayak will be very difficult, maybe impossible. What if it comes back and I can't regain an active lifestyle? I am really trying to take things one day at a time but... it is hard... I will do things...even if it causes some pain... becuase it hurts when I do things, hurts when I don't... so I might as well do things....I need to try to enjoy things and if it gets unbearable, then I will stop.

I am trying to count my blessings too...believe it or not... there are so many things I am thankful for... my family, my friends, for pain killers.... (that was my feeble attempt at cracking a joke after being Debby Downer... I take them sparingly.) And I am still here...

Many people I know have gone through things much more significant... so I am trying to keep this all in perpective.

Throughout this I have thought a lot about one of my uncle's who has battled cancer for some time now... he recently got great news at his routine check-up... cancer - free.... but I know given all he has gone through, my uncle, his wife, and family are grateful for that news, but fear the news at the next check up...for them... very consuming. Another relative I have is an amazingly strong woman...surviving the emotional devistation of divorce...while others may see it as having happened a long time ago...is, I would be willing to bet, is still very much present....yet she has become even more beautiful and strong.... "Rico"...recently lost his mom, who was perhaps his best friend, to cancer...who manages to reach out to me with calls and emails... and others whose battles have been more private.... so... I have a lot of people who have gone through a lot...and made it through...or are making it through...day by day.... You all give me strength.

When I started blogging today I didn't anticipate it was going to be such an intense post. I apologize for posting things that may perhaps cause people to worry about me... I know that will all of the love and support I have, I will get through all this...