6/27/2009

Cautiously optimistic...

Last night I stayed home and just kind of let myself be... I was very happy about my knee news and strange as it may sound... it's kind of hard for me to believe. The way that life has been in the last few years... has taken away some of my optimism... and I am pretty angry about that. Just when things seem to start settling down, something dramatic happens and life feels so out of control. It's been a long time since I have felt hopeful about anything... When I write that it sounds so desperate. I have had moments of fun and good times with people who mean a lot to me, but in the last few years, especially the last year and a half.... my energy has been splintered between what was happening in the moment and what was going on elsewhere... I am a person who can be having a conversation while having a million other things on my mind... and in recent times, it seems like that ability has only increased. I find it difficult to live in the moment anymore...not that I was ever astute at that... but it's even harder for me now...

The closer yesterday's appointment came... the more it was on my mind... I had devised a plan... that if I needed another surgery I would arrange to go to a rehabilitation place following the surgery.... I would bravely tell my dad that I had expected bad news and that I was okay with having to have another surgery... and try so hard to not fall apart when hearing or seeing the concern in his voice/eyes....I feared that getting bad news would stop me from being active, from wanting to be active...I thought about how hard it was... to go through the surgery for the first time... and was ready to get my walker and crutches out of my basement... I really had NOT thought about what I would do IF I got good news...I really wanted good news.. but have been very afraid to hope for it, to really want it... to think of that possibility...

Yesterday I had my xrays first... then reported to the doctor's office... and he was running behind schedule. Great... I thought... MORE time to think... to freak out...I made conversations with Sara and some small talk with other patients in the waiting room... all the time thinking about the word 'unfortunately'... assuming that after reviewing the MRI and xrays, my gentle doctor would turn to me and say, "Unfortunately...." and something about PVNS's return...I hadn't predicted how the rest of his sentence would be delivered, but I was certain that 'unfortunately' would be its opener... eventually they put me in an exam room... and Sara came in with me, to take notes...and to offer some humor relief... and we sat there and I am sure my heart was racing... wanting this to be behind me, but also not looking forward to what could unfold... so I at on the little table thingy...swinging my legs... playing with the ring I strategically wore for that purpose...waiting...

The first doctor I saw was one of the doctors who works closely with my doc... I have spoken with her before and she was the person I harassed so much last year before my appointment to give me the news before I faced them in person... She asked how I was doing and I shared that I have some pain in my knee after doing twisting motions.... she asked me to bend and straighten my knee... and pushed and pulled on it a bit..... then she looked at this year's X-rays...compared them to last years... and said that there was no progression of the slight arthritis... and that it looked good...then she moved to the MRI, and compared it to last year's MRI... saying that some things looked better this year even... she purposefully zoomed in on a couple of areas and said that she would wait for my doctor to officially say that things were good, but that to her, things looked good, clear of PVNS.... She concluded that any pain I am having is just because it is a new movement... which makes sense to me...I asked her about things that I have heard form others with PVNS, about the disease going into the bone....and she explained that PVNS is never gone, once it is present... that there ARE microscopic PVNS cells that will be present... and that I should know that it WILL come back... it's just a matter of when... and to what degree... but she said that when people talk about PVNS going into their bones... what that means is that the PVNS has caused lesions in the tissue of the joint and naturally our body sends many cells to that area to try to combat that lesion... and as those well intentioned cells are working to eradicate the lesion, they inadvertently erode the bone... she said it is similar to the process of arthritis....which made sense to me when she explained it... and now it seems less clear, but...the way she explained it.... it is not common for that to happen... for this disease to cause bone erosion... and that when it does happen it is usually a result of lesions being present for some time and not being treated... and those extreme lesions do cause symptoms and that sometimes treatment routes are not very aggressive... and that's when people get into trouble. She left the room to get my doctor to give me the official news... and as she left Sara smiled at me and said "It sounds like good news..." I returned her smile... not because I was happy, but because I knew she wanted me to be happy...and I was very unsure of myself in those moments... could it be real? could it be true? I felt my nose get a little tingly, like before your eyes water and quickly told myself to regroup... and then my doctor came in... and said that he had heard that I have some discomfort after Zumba... and asked how I was doing otherwise... he also had me straighten and bend my leg... and asked if my range of motion was better than prior to surgery... prior to surgery, yes... prior to PVNS? I can't recall... prior to surgery my knee was so swollen... so swollen... and painful... that bending it was difficult... climbing stairs... awful... even just sitting was, at times, excruciating.... so my knee now, compared to before surgery... AMAZINGly different... and I have feared that it is too good to be true. So I told him it was so much better than before surgery... so much better.... he reviewed the MRI and said that he concurred... there is no regrowth of PVNS at this time... he said he has been dealing with this disease for 20 plus years and in his experience he thinks I am doing great... and asked me how I would feel about not having to see him for two years... I'm not sure what expression came to my face at that time... but I was in shock, frankly... what? Did he just say 2 years without having to come back to be checked? Uhhh.. okay... yeah, sure, absolutely... I said something like, "While I do enjoy you Dr. so and so... I would enjoy not having to see you for two years." I gladly took that as the news...I did ask if I had any problems in the meantime what I should do, and he said not to hesitate to get in touch with him and I would come back to see him...as I left the exam room... I kind of wanted to bolt out of there... but I had to stop at the desk to schedule my next appointment... in June 2011...wow...what will life be like then?

As I left the offices in that part of the hospital I wasn't sure what to say...Sara reached over and put her arm around me congratulating me on the good news and again I felt that little tingle in my nose... and did feel relieved... but refused to cry...there...in that moment... and have developed the ability to push that stuff down, to knd of shake it off in that moment... and revisit it later... I have cried so much in the last several months... and didn't want to cry about something that was good... I left my dad a message, somewhat relieved that it was his machine because I may have cried in hearing him at that moment... and called my sister and kept it short and sweet with her... and then we went to retrieve my truck...

I think Sara expected me to feel more celebratory...but I was kind of numb... as we drove out of Boston... in rush hour traffic... I kept thinking about it, still thinking and replaying it all... I found myself sighing from time to time... releasing some of the stress I had been feeling... remembering the xray and MRI images on the computer...and hearing two years... come back in two years.... wow... all that I heard reinforces that if I have any issues with my knee, I will be aggressive in getting back to Boston...As the first doctor said... I do still have PVNS... but it is not causing issues/growth at this time. Last night I just kind of let myself digest the day... and as the rest of my body relaxed my stomach made me pay for all of my anxiety...but that subsided...

I am cautiously optimistic that this is a turning point for me... that maybe the universe has decided to let me have some good things....some good times.... and while I am happy about it, very thankful about it.... it makes me very uneasy... maybe that doesn't make sense... but... it's true... so I am just going to sit with this information for a while... and see what happens....

No comments:

My Favorite Place

My Favorite Place