Thursday, November 25, 2010

25 Reasons To Be Thankful

For those on Facebook i'm sure you saw the "25 Days of Thankfulness". If not, this is what it looked like
"November 25 is Thanksgiving so I am going to post 25 days of Thankfulness! I encourage you to do the same. " Well I got to day 6 and missed 19 days worth of thankful posts. Instead of trying to catch up on Facebook I thought i'd write down my reasons for being thankful here.

I am thankful:
  • For living during a time that I have options, besides amputation, for dealing with my cancer
  • For my surgeons
  • For my parents. I don't know what we would have done without their help.
  • For my kidletts
  • For good books
  • For Facebook
  • For pain medicine
  • For the technology that allows me the ability to communicate with my friends daily
  • For my husband who gave me my Lovanox shots, made sure I took my medicine, made sure I ate. He also took care of the house, kids, worked full time and went to school while taking care of me.
  • For my friends who called, sent me books, texted and IM'ed me. Also those of you, you know who you are, who still listen to me whine and cry. Thank you
  • For the house we were able to buy this year
  • For my kids' health
  • For the knowledge that even though it's been a crappy 18 months the kids seem well adjusted and happy
  • For good wine and whiskey
  • For Tricare. We are extremely blessed that we haven't had to pay anything for my surgeries or treatments
  • For my physical therapist
  • For my body and the ability for it to heal
  • For the Texas weather
  • For the garden I was able to grow this summer, that is still producing tomatoes and fresh lettuce
  • For my walk-in-shower, people who have had leg surgery or have ever broken their leg know exactly what i'm talking about
  • For ice
  • For hot pads
  • For Netflix
  • For good nurses
  • For no cancer recurance or metastasis

Wednesday, November 24, 2010

Update on Physical Therapy appointment

I met with my Physical Therapist on Monday and the appointment went pretty well. My knee is swollen and the screw that is working its way out (unscrewing itself?) is a bit more pronounced than it was before. Even with that I still have a range of motion of 125+ and can still straighten out my leg. However, when she tried to get me to push or pull against her hand my knee wasn't having it. It started popping and then it started hurting. When I rolled over onto my stomach it popped so loud that it caused several people to pause and look in my direction. Yay.

After my exam I was able to discuss the surgery with her and get her opinion on things, as well as get some ideas on what to ask my surgeon. She informed me that she expects my knee to have a range of motion of 90 two weeks after surgery and if I can't do it on my own then she will do it for me. If that isn't motivation, I don't know what is. I've seen her manipulating peoples knees... no thank you.  She also told me to stop reading things and listening to people tell me what I can and can't do after a total knee replacement. She said everyone is different and I will probably be surprised at what I can do. Then she reminded me that it would take 12 months for me to be completely healed and to be gentle on my body and remember what it's been through.

I am now doing all of my physical therapy at home and, hopefully, I won't see need to see her until after my surgery.

Sunday, November 21, 2010

No Regrets

I am meeting with my Physical Therapist tomorrow to see how my leg strength and range of motion (ROM) is doing. Not that any of that will really matter after my surgery, since i'll be starting from square one, but it will be a good time to ask her some questions. Like what to expect Physical Therapy wise after surgery and how long it will take to get back to normal.

I've had quite a few people ask me, since learning about my upcoming surgery, why my doctor didn't just replace my knee in the first place. Or do I regret the decision I made 18 months ago, knowing what I now know. I can honestly say that no, I wouldn't have done anything differently and I have no regrets. Even though my life has been a challenge the past 18 months I am grateful that I had this chance that this surgery gave me of going back to a normal life. By all accounts this surgery was succesful, my body did what is was supposed to. I grew healthy and strong bone. My knee just couldn't take it anymore. But that's also okay because honestly my knee did better than a lot of people expected. I was able to get back full range of motion, even after 2 surgeries.

Now i'm looking forward to the New Year with a new leg and knee. Also with new hope. New hope to walk, ride my bike, dance (hint, hint Gabe) and do activities with the kids.

Tuesday, November 16, 2010

Part 2 ... Diagnosis and Surgery

What Is An Orthopedic Oncologist?

I met Dr. Templeton on June 19, 2009. At my first appointment we reviewed my tests, the X-rays, MRI and Bone Scan. She didn't seem too concerned about the MRI or Bone Scan, since I had a tumor the contrast would show up in that area, but she was concerned about the X-ray. My tumor was 10 cm, with white margins and a dark center. The dark center was concerning because it mean the tumor had not had a chance to calcify, which meant that the dark area was recent growth, which meant it was more likely to be cancer.

I was sent for one more test, a Thallium test, to find out once and for all if I had cancer. The scan was hard because I had to sit still for an hour while getting my IV and then lay still while getting the scan. Anyone who knows me knows how much I fidget and move around, sitting still is torture.

After it was over I was told that I would hear back the next Tuesday.

On Tuesday I taught a Bootcamp class and told my students that I hoped to not hear from the doctors office that day. No news is good news, right? And if they don't call right away it means it's nothing serious... or at least that was my logic. I got my wish, didn't hear anything that day.
On Wednesday my husband and I got into a fight. He wanted me to call, I refused. I didn't want to know, the less I knew the better. My husband had a class that day so he texted and called me a few times asking if I had called Dr. Templeton's office yet. He wasn't pleased when I told him "no".

I finally did get a call, from Dr. Templeton's nurse Brenda. I don't remember the entire conversation, just the words "Unfortunately, it's more aggressive than we thought." I made an appointment to see Dr. T the following Tuesday, to discuss my options and get a surgery date. I know my husband called me at some point after I got off the phone and when I told him the news he said he was coming home. I also called my mom. But that's pretty much all I remember of that time. I just went into shock and survival mode.

At my appointment with Dr. T I had to have a chest CT to make sure there were no lung nodules. Chondrosarcoma tends to metastasize to the lungs so she wanted to make sure I had no other issues going on before the surgery. I remember going through the CT machine and thinking "I'm too young for this", which in hindsight is a stupid thought when you think about all the children and young adults who get cancer. I also had all of my pre-op tests, bloodwork, and admission paperwork done that day. We set the date for July 7, 2009, there was someone who had already scheduled the first surgery so I was going second.

On July 6, 2009 my husband and I drove up to Kansas City and spent the day shopping and eating out. It was fun, but there was also some tension. We knew there were risks with the surgery and i'm sure that in the back of both our minds we were thinking of the possibility of me dying. We were trying to make the most of it, and I think we did. The kids were in Oregon, my parents were AWESOME in helping us out with them, so it was nice to just have some time alone as a couple. I was also trying to savor every moment of walking, I didn't know how long it would be before I would walk again and I wanted to enjoy every minute.

I think I was supposed to be at the hospital around 8 am the next day since I was second in line. We got there, waited, waited and waited. Brenda, Dr. T's nurse, came into the waiting room and let us know that Dr. T had been asked to help with another surgery so I would be 3rd in line. So we sat and waited and waited and waited some more. I started getting worried about the staff starting my IV, I'm a hard stick anyway, and since I hadn't eaten since midnight I knew it would be even more "fun". Around noon, Brenda called us out of the waiting room and let us know that there had been a complication with the surgery before mine and that my surgery wouldn't be happening that day. I was rescheduled for first surgery on Friday morning and Dr. T's office reimbursed us for the hotel room. It was a huge let down driving home that afternoon. We had mentally prepared ourselves for the surgery and I was so ready to get it over with, waiting 3 more days felt like torture.

After that experience we decided to just drive to the hospital on Friday morning. I had to be there at 5:30 am, so I just opted not to go to bed. I stayed up, read, watched a movie and tried not to think about the surgery. I figured I would sleep during the surgery and I wanted to be a bit tired so that I would be sleepy, and hopefuly not as anxious. We got to the hospital, checked in, and almost immediately I was taken back to the surgery prep area. I got a gown, some slippers and an awesome hat. It didn't take very long before nurses were coming in, getting my information, an anesthesia student came in to start my IV (took her 2 tries and then she managed to get so much blood everywhere we had to change the sheets, my gown and the blankets). Then the anesthesiologist came in to discuss options for pain relief and to let me know I would be getting something to help me relax (in my opinion you should get this before the IV is started). I got a nerve block, similar to an epidural except lower, for my leg and he told me that I would be pain free post surgery. Everything happened so fast at that point and I was sleepy because the drugs kicked in and I don't remember a lot. They brought my husband in, but it was so crowded and busy we just got to have a quick kiss and "I'll see you later" before I was wheeled out to the the OR. I remember saying very clever and witty things to the nurses and doctors while waiting to go to sleep and the last thing I remember was a mask, someone telling me to count back from 10...

.... and then I woke up... in pain.... and telling the nurse the the @#$*(& anesthesiologist had lied to me. Recovery is a bit of a blur, Dr. T came and talked to me letting me know that the surgery went well, they got all the tumor, it had been biopsied and it was 100% cancer. She told me that my bones looked great, nice and strong, and that I had lost a good deal of blood and was close to needing a transfusion. Next thing I remember was being wheeled out to my room, seeing Gabe, and pain from being moved to my bed. I had a pump for my nerve block, with a little button I could push, and they told me to push it whenever I hurt so they could get an accurate measure of my pain level. I think I pushed that button no less than 100 times when they moved me. I had a great nurse who offered me Morphine and I took her up on her offer. Morphine and Dilaudid became my best friends that night.

I was in the hospital for 5 days and I think I surprised everyone with how quickly I gained my strenth after the surgery. The first 3 days were really painful, at one point I thought I'd never get out of bed again and I would have clung on for dear life had anyone tried to get me up. Sitting up was torture and just I needed either morphine or dilaudid if I had to roll over or move my leg. Thankfully Dr. T had orders that I was not to allowed out of bed for 3 days, and by day 3 moving around in bed was less painful. The first time out of bed I got dizzy and almost threw up, and could only sit in the chair next to my bed for 5 minutes. By the 5th day I was navigating the stairs with the physical therapist, and did 2 laps around the orthopedics floor. Dr. T had no reason to keep me in the hospital any longer and I was ready to get home.

On the afternoon of July 15th I was loaded in the car to head home and begin my new life as a Cancer survivor.

Monday, November 15, 2010

In a funk....

I was planning on writing part 2 of my story today, but I will do that tomorrow. Right now i'm in a funk... brought on by the innocent statement made by my 5 year old last night. He wanted to know when my leg would be well enough to go running. He said he wanted me to run so that he could ride his bike while I ran, which is something I used to do before my surgery. I can't believe he remembered something that I haven't done in over 18 months.

Since I was already feeling blah I decided the smart thing to do would be to find shorts to wear after my surgery. Yeah, not what I needed today. I'm up to a size XXL. I have never been this big before, even after my pregnancies. And even with the pregnancies at least I had a "prize" at the end. I'm really, really dreading my upcoming jeans shopping trip. I have to do it, I only have summer clothes and it's getting cooler here. I've been holding off because I was increasing my activity after getting cleared to go off of crutches and had managed to lose some weight. Now that i'm back on a cane, or crutch when I'm doing a lot of walking, my weightloss has stalled.

At this point i'm counting down until my next surgery. I am tired. I am ready to be somewhat "normal" and do normal mom things with her kids.

Saturday, November 13, 2010

Part 1 of my story ~ before the diagnosis

In March of 2009 I was doing what I loved. Being an active mom to 4 kids, running, walking my dog, teaching Spinning, doing Crossfit and lifting weights. I started having knee pain after exercising, it started off as a twinge and gradually got worse. After a few weeks I finally went to the doctor, I couldn't put it off anymore and I felt like a hypocrite telling my spinning students to see a doctor for twinges and pains when I was avoiding going.

To say I was dreading the appointment is an understatement because I sure she was going to tell me to stop exercising for 6 weeks and I had no desire to give up doing what I loved. At the appointment my doctor commented on the crunchiness of my knees (thank you arthritis!) and recomended an x-ray just to see what was going on. The x-ray tech just happened to be someone who worked out at the gym so he knew me by sight. We chit chatted a bit, between being positioned on the table and being told to hold still. After the first x-ray was taken I heard someone say "what in the world?" and then the voice of the x-ray tech asking if I had ever broken my femur. I laughed and said "no, I think I would remember something like that. Why?". The tech got quiet and told me that there was "something" wrong with my bone, he didn't know what, in fact he shouldn't even be telling me, but he wanted to be aware that I would be getting a call the next day for a full Femur series.

Like expected the next day my doctors office called and asked for a full Femur series. I had a different tech so I couldn't ask what was going on. Well I think I did but she told me I had to wait until the doctor looked at the pictures. To say I was nervous is an understatement. The following day I received the call I had been waiting for. I had a bone tumor. I was being referred to Orthopedics and but I had to wait for them to call me for an appointment. Anyone who has been in my position knows the agony I went through. What kind of bone tumor? Cancer? Not cancer? Would I need surgery? It was awful. Like any sane person does after finding out they have a bone tumor I did Bing and Google searches and I did NOT like the results. At one point I told my husband that the only bone tumor I didn't want was a Chondrosarcoma, but honestly, the other options weren't much better.

After arguing with Orthopedics, who wanted me to wait until JUNE to see a doctor, I finally got to see an Orthopedist in April. I had a 10cm Enchondroma, but because it could turn out to be a Chondrosarcoma he wanted me to have a Bone Scan and MRI. He was 99% sure that it was nothing to worry about, I didn't fit the typical demographic. I was under 40 and female. After having both tests, I had a follow up in May. Unfortunately nothing showed conclusively that the tumor was a benign enchondroma so I was refered to my first Orthopedic Oncologist, Dr. Kimberly Templeton at Kansas University Medical Center.

Friday, November 12, 2010

This woman is amazing!

http://www.winnipegfreepress.com/local/emmiracle-emmom-103194769.html

Surgery research

I'm trying to do as much research as I can on my upcoming surgery. It is so hard to gather information since this has only been approved since 2004 and a Bing or Google search will provide me with the company website and a research study, or two, on 70 year olds. Other survivors that I have met have either had a different kind of surgery, involving resection and reconstruction using cadaver bones, or have had Chondrosarcoma in another part of the body.

My new implant will be a Biomet Compress Distal Femur Replacement. It is designed to promote bone strength so that the implant has less chance of breaking loose or fracturing the bone. It should last 10-15 years and though i'm sad that I won't be able to run again at least i'll be off of crutches. The xray pictures do look impressive and at this point I feel that if I can hold off having surgery #4 for another 10 - 15 years I will be happy.