Clarification

I've gotten several e-mails and calls from my blog readers wanting to know exactly what's going on with me medically. I guess I get a little side tracked when writing---or try to avoid the subject---and don't really even realize it. Here's some clarification for all of you! Hopefully this is easier to understand! :)

1) About mid-December my right leg started hurting really bad. It felt like a bad growing pain, but since I wasn't getting any taller, I assumed it was from too much running/exercise. Before the pain started, I was running between 6-7 miles a day, so I thought it was from that.

2) The pain persisted and got worse and I finally decided to go to the doctor for the first time mid-January. The doctor took an X-Ray, which was normal, and sent me on my way with Vicodin.

3) The Vicodin hardly took care of the pain. Back to the doctor I went and he requested an "Urgent MRI." He told us he thought it was a torn meniscus, which wouldn't show up on an X-Ray, so that's why I needed the MRI.

4) Nurse from doctors office calls. Request for the "urgent MRI" was denied by the insurance company. Insurance company says to take ibuprofen for 4 weeks and ice it. What the hell! The doctor had already given me Vicodin...it was a little more than just an ibuprofen thing!

5) I have to go back to the doctor to get another request for an MRI. (Side note: health care is so messed up. I had to go to the doctor about 5 times for the SAME thing before anything got done. It's crazy!!)

6) We find out at the doctors appointment that the doc who requested the MRI only put "knee pain" in the dictation. Nothing about me already having 2 X-Rays, nothing about the pain.

7) New doctor re-requests MRI with proper dictation, takes 4 or 5 days to get appointment. Have MRI on a Saturday night at 9:30 pm at the hospital.

8) Go back to doctor to get results and see what I can do about pain. At this point, it was getting to be so bad, I had to use crutches. He walks in the door saying, "MRI is normal!" I was a little excited, but more let down than anything. I thought for sure it was going to be a torn meniscus and it would be a quick surgery and I'd be done with all of this. He then gave me another exam...he probably thought all of this was in my head since all the tests were normal! He touched a part of my leg and I screamed so loud I probably woke the crazy people on the 7th floor up! Right then he said, "I can't do anything else for you...you need to go see an orthopedic surgeon."

9) Call Pacific Surgical Institute to make appointment. First appointment: end of February. I know everyone thinks they're in need of immediate attention, but I really was. I could barley walk, could barley work...I was suffering! I explained to the lady I talked to the situation, she talked to the doctor, and I had an appointment 2 days after that.

10) My appointment was on Friday, Januray 25th with Dr. Kretzler. I am so thankful I was able to get in and see him. As Dr. Conrad, my doctor at UW said, "he's a smart cookie." Dr. Kretzler walked in the room and didn't even give me an exam. I kept thinking this was just another appointment where nothing would get solved. Wrong. He wanted us to see my MRI. I thought maybe it was a torn meniscus, but while he was waiting for it to pull up, he said that my MRI was definitely NOT NORMAL and he wasn't sure how the radiologist had overlooked it, being that the radiologist report in his hand said "normal." I could feel my heart pounding...I didn't want to hear what he was going to say. I was totally crushed. He had another doctor look at it while I was having blood work done and they concluded that I needed to be seen at the University of Washington ASAP. Holy shit! I knew it was bad if what they saw couldn't be treated by anyone in southwest Washington!

11) My family and I spend all weekend terrified. He told us to be ready to pack our bags and leave for Seattle on Sunday because they thought my appointment would be first thing Monday morning. He mentioned lymphoma, malignant tumor, benign tumor as what it could possibly be. Google and YouTube were my evil friends all weekend as I researched every combination of these things. Not a good idea!

12) I continued to work the following week because we found out my appointment in Seattle wouldn't be until the following Monday. Great news, right?! That meant that Dr. Conrad had looked everything over and determined I wasn't as urgent as Dr. Kretzler had thought! Wrong.

13) We showed up in Seattle on Monday, February 11 for my first appointment with Dr. Conrad. He walked into the room and Kim, mom, dad and Joe were all in the room with me. We were so scared! First thing he said, "I don't even know what's going on...I haven't even looked at the MRI yet." Well shit! If we had known that we hadn't gotten our hopes up! So it was back to square one. He pulled the MRI up and immediately saw something. The bottom part of my femur was all white, which most likely meant a tumor. He told us all he didn't think it was benign, but even with it being cancer, I would recover just fine at my age. He said they would cut the bottom part of my femur off, replace it with a rod and I'd get an entire new knee. Great. A fake knee at 24? Awesome. He said there was also a small chance of it being an infection, but he said that would be very unusual.

14) He makes my appointment for biopsy on that Thursday and says we need to be up there on Wednesday for my pre-op appointment.

15) We go up to Seattle on Wednesday, go to my appointment and then have dinner at Aunt Lynda's. I had to be at the hospital at 5:30 the next morning.

16) Thursday morning I have surgery. Before going in, he had told us that he was pretty sure he would be able to tell what it was after. Wrong again. He said it wasn't an obvious cancerous tumor, wasn't an obvious benign tumor and it didn't really look like an infection. Shiiiiiit. Seriously. I think I may go down as being the most odd patient he's ever seen! He's one of the best and he doesn't know what's wrong? They made three incisions on my right leg. Two on the side and one on the back where my knee bends. The took three or four vials of bone and sent it to pathology. I was in SO much pain from the surgery I didn't think I would ever be myself again! Luckily that went away after about a week, but the pain I had before is back and still going strong. Wheelchair or crutches....that's how I roll.

17) I called the nurse to get results while I was in Hawaii and got a call back saying they'd like to wait until they see me in clinic on the 3rd. Is that good or bad? I'm hoping for the best but planning for the worst.

So that's it. There's three possibilities. It's either a benign tumor (slim chance says doc), a cancerous sarcoma (most likely) or an infection (rare). If it's the "C" word, I'll have to start chemo/radiation and all that not-so-fun stuff. If it's an infection, I'll have to have strong medication given to me 24/7 through an IV for about 3 months. I've researched about such infections and found out that during this time, bed rest is suggested. M-I-S-E-R-A-B-L-E.

I have my appointment at Monday at UW at 1. Think positive thoughts and keep praying/crossing your fingers/whatever you do. I need it!

Happy Friday,
Katie

Back to reality

We're home from Maui and now it's back to reality. I woke up this morning hurting more than ever. Joe had to go get me my medicine and I just now got enough energy to get out of bed and take a bath. This is the first day throughout all of this that I can honestly say I am depressed. I feel weak, scared, stressed, empty. I want to be normal. I want to get back to my routine of waking up, working out, going to work and feeling full of energy! Today the thought of food makes me sick, I'm alone after being surrounded with family/friends for 12 days, I feel like an emotional basket case...it sucks.

Although I wasn't able to do much in Maui, it was a wonderful escape for all of us. For 12 days I was surrounded by family. Every morning we'd wake up, go have breakfast and lounge around by the pool all day. For 12 days, besides being in pain, my mind was in a place far away from the reality that I will be faced with on Monday.

I try to stay strong and optimistic, but how can I do so when I'm in so much pain?

tip no. 41: Journaling is self-therapy on the cheap

I went to bed last night with such great intentions for today. I was going to wake up super early, watch the sunrise and head down to the pool to soak up some last minute sun before we leave. Instead, I woke up feeling like I've been hit by a truck. A truck that hit me, backed up, then hit me again. Mom had to bring me my pills, as I could hardly stand to get to the bathroom. I really don't know how much longer I can handle this! I was starting to feel so excited...I was so hopeful that the pain would be relieved after having the biopsy. Nope. I thought maybe I over did it the other day when I walked a little, but since then I haven't moved at all! I literally get pushed and/or wheel myself everywhere. It doesn't take too much effort to lay around drinking virgin drinks all day, so what is causing this pain?! On the 0-10 pain scale, right now it's about a 9.9.

Cancer or infection, they have to do something for this pain! It's taking over my life, not to mention everyone who has been caring for me. I feel like such a pain in the ass...wheel me here, wheel me there, get me this, get me that. I feel like I've lost my independence. Dr. Conrad said I can take more than 2 percocet at a time and I think I should start. I'm just worried about how that will make me feel. When I first started taking them, I'd just fall asleep for hours. I can't imagine taking more than 2...I'll sleep all day!

I finished reading "Crazy Sexy Cancer Tips" this trip. When I saw it, I had to get it. The first page I turned to said, "Happy Valentine's Day. You have cancer!" A few chapters after that was, "Holy shit! I have cancer." Instantly I felt connected. Not only did my biopsy take place on Valentine's Day, I think I've said holy shit about all of this many times, so I knew I would be able to relate. It's not about older people who've been married for 60 years, have a wonderful life, blah blah blah. It's about young women my age who still have a full life to live, are active, healthy and, in my opinion, don't deserve to have this crap happening!

Anyway, it's really helped me get through a lot of this. Even though I haven't been diagnosed yet, all of the girls in the book have gone through exactly what I'm going through now. Waiting, wondering, being in pain. It helps to read about others and get it through my head that I'll be OK. One of the tips was to get a shrink. I think I may be needing to do that for sure!

Keep keeping me in your prayers! It amazes me how many people are praying for me. I think I'm on just about every prayer chain in Longview. Harlan Gilliland (Longview Community pastor) has been calling, people on my parents hill have a prayer chain going...it's so touching. Although I don't belong or go to church, I still believe. Is that good enough? In times like this, I start to wonder. And although I believe, I find myself having a hard time having faith. Why would God want anyone to have to go though something like this? Not to mention my family. It's just as hard on them as it is on me!

Alright, time to try to get moving. I dread packing. As always, I brought way to much. 7 pairs of sandals/flip flops, about 1093 skirts....I do this every time. I already sent more than 1/2 home with Joe and my bag is still bulging at the seams! And that's not to mention all the shizzle I've bought! I have to wear the stupid compression socks that go up to my knee on the plane to prevent blood clots. On the other hand, I get handicap seating again. But then again, I look like a handicap. :/ Oh well...this too shall pass. Right?

Last night in Maui

Well, we just watched out last sunset in Maui. I can't believe how fast the time has gone...and I was here longer than anyone else, 12 nights! I'm dreading leaving tomorrow simply because of the fact of what's ahead of me. I wish I could have left Sunday with Joe and gone back to work on Monday and just been bummed out about vacation being over. This time it means a lot more than that. I would give anything to be going back and getting back into the swing of things at work, but as soon as we get back we'll be getting my diagnosis from Dr. Conrad.

I think it will just be mom, dad and Kim going to Seattle with me on Monday. I want Joe to be there, but in a way I don't. I almost feel like I want to protect him from all of this. If it ends up being the C word, will he still want to be with me? Will I have to quit my job? Will I ever be able to have kids? This is such a scary time for me. Not knowing is the worst part, but finding out will be just as scary. Thinking about Monday makes me sick!

Alright, time to go get ready for our last dinner. We're going for dinner at Longhi's at 7:30 and then walk to Leilani's from our hotel after for some last chance Hula Pie. I've really had a relaxing/lazy vacation being that I can't even walk. I've been wheeled around everywhere we go! I can't wait till Joe and I come back and I can do everything we had planned on doing before all of this happened!

We leave for the airport at 2:30 tomorrow. Kim and George will be leaving at 12, but they're going to Kauai until Sunday. I'm jealous!

Love from Maui!

Katie

I love Maui!

Aloha! I'm still in Maui. Joe left in Sunday, but dad got my flight changed so I'll be flying back with them and the Staples in Wednesday. The doctor didn't want me going back to work until at least the 29th so I couldn't stand the thought of staying home all day by myself. Mom has been taking care of me every day while Joe is at work...and I need her help bad, so I'm not sure what I would have done. The Hyatt is nice but I like where Joe and I stayed better. It's lonely with Joe gone but Kim and George are still here so I'm having fun. The pain from the surgery has started to go away but the pain I had before is still here. Today it's really bad, I think I over did it yesterday (I walked). Pathetic, huh?!

Anyway, despite being confined to the wheelchair, we've been having a great time. The wedding was gorgeous and so much fun! Joe loved it here. It was fun to be here with them since they've never been here before. David and Jayne loved it too. It's nice to have a couple more days here, but I can't wait to get home to see Joe and Subie. We had to board Subie for a week! Joe went to pick him up yesterday though and they said he did great. I'll be trying my hardest to make it to work on Thursday. I feel a tremendous amount of guilt for missing so much. I just have to keep reminding myself that this has been totally out if my control. It's hard though!

I have my next appointment with Dr. Conrad in Seattle on Monday. That will be the day when I find out what the heck is wrong with me. Being away has been a huge stress reliever but I find myself getting scared again now that the appointment is getting closer. I just want to be better and done with this!

Alright, that's all for now. Don't be too jealous of the fact that I'm in Maui... It rained all day yesterday! Today is a different story but I won't get into that! :)

P.S. Please exuse the typos...I'm using my phone and I'm too lazy to go back and fix them all!

Katie

Waiting for the phone to ring

Good morning! It's 8:22 Maui time, 10:22 Longview time. I'm waiting for the doctor to call me with the results of the CT scan. I'm scared, but more in denial. How can this be happening to me? What did I do to deserve it? I have too much going on in my life to have to deal with this. I'm young, I exercise, I eat healthy (when not on vacay!), drink in moderation...why me? How does this happen?

I also feel a tremendous amount of guilt. Guilt for making everyone so worried/ scared, guilty for having to have people help me 24/7, guilty for missing work, guilty for putting my family through this. It's a horrible feeling.

Anyway, cross your fingers that the CT scan comes back clear!

In Maui news, we went to Leilani's with everyone last night for dinner, had some Hula Pie, wheeled around and shopped, layed on the beach and just relaxed.

We're going to go get some breakfast now then head to Big Beach. The wedding festivities start tomorrow!

Love from Maui!
Katie

P.S. GO OBAMA!! The Hawaii caucus is today!

Aloha!

Aloha! We made it to Maui safe and sound yesterday. The flight was rough, but I was able to get handicap seating for part of it (never knew they had that!) It's kind of sad being here and not being able to do the things I want to do but the weather is awesome and it's so nice to be away from reality for awhile. My pain is still bad, about a 7 on the pain scale, but I'm getting by as best as I can.

Massage tomorrow morning, some shopping by way of wheelchair and I'm hoping to be able to fight the pain of limping to lay on the beach! Then dinner at Leilani's with my parents, sister and bro-in-law. I'm excited for them to get here!

Alright, that's all for now...I'm using my iPhone and I'm tired of typing!

Katie