(Be aware... I have posted a photo below of the staples/stitches after surgery.)
I remember seeing the Orthopedic Surgeon prior to the day of the surgery. I remember the medical campus and the building. I remember the waiting room, the large curved waiting room filled with sad, worried people... some of whom were not able to have the surgery they needed to stay alive. They didn't have the option- because of their insurance. At the time, there were only a handful of surgeons that performed this type of surgery and I was lucky one of them was so close to home... and even more lucky that I had insurance they accepted. All those people in the waiting room that were there with those bad insurance plans were there in hopes to catch the doctor on his way in or way out to beg and plead and hopefully find a way to get the help they so desperately needed. I didn't see a light at the end of their tunnel for them, so I started bringing little gifts to the waiting room. Silly little things with little notes on them just to let them know that someone cared. I passed them out in the waiting room to everyone. It was just little samples of lotion with my card and a happy note. Nothing extravagant. I think it also helped me stay busy while I waited. I find that's very important to do when facing life-threatening illnesses that you are waiting to discuss with a professional who is going to either give you good news about living or bad news about possibly not.
This is a microscopic view of the mutated cells. The enlarged circle area is a tumor that is forming. Dr. F. took the tumor from my kidney, liquidized it, ran it through a machine that separates the mutated cells from the healthy cells and then put them into petri dishes and is growing more of my tumors. Then, he puts them into smaller individual dishes and tests cures on them. He gave us a tour of his lab... pretty interesting stuff. The long squiggles are the blood vessels that the tumor is forming to search for nutrition.
When I was called in once, I only remember little pieces of this particular meeting. I remember him opening a case, similar to a metal briefcase like the mafia carry in movies when they handcuff it to their wrists, which held all the parts of what they would replace about 5" of my femur bone with and then reconstruct the hip socket. I remember looking at my mom like “I can’t handle this… this is way too much information for me.” She caught the look and said it was ok for me to not to have the details. We needed to do this and get through it and we needed to trust the doctors. Sometimes in extreme situations, it's comforting just to hear an "it's ok" from someone you trust. In this particular moment, I was mentally "checking out" very quickly... retreating to my internal self and overwhelmingly, anxiously contemplating my options, which were really either having this surgery or letting the tumor cells continue to flow and grow anywhere they please to multiply and eat me from the inside out until death. So, yeah, I chose surgery. But the rest of the meeting is not in my conscious memory. It's blocked like so many other memories.
I know I was one of the first however-many people to have this specific prosthetic and I also know that I was the youngest that this doctor had heard of. He was not able to answer many of my questions, though I'm not sure that any doctor would have been able to answer them. I was wondering how long this prosthetic would last. Would I have to have this re-done at some point? If so, what's the average life expectancy of this new body part? Because I really didn't actually want to know the answers to any of these questions, I vaguely remember his responses. I remember him saying that most people that get any prosthetic in general will need sort of a "tune-up" somewhere around 5-8 years. But, this one was a much larger one than normal and very new and durable. He said it could last 20 years or more... he just didn't know because it's too new and because most of the people that get this type of prosthetic are much older and end up "passing on" before the prosthetic wears out. OK... So, longer than 20 years then. Like let's just say 60 years. That should be ok.
March 8, 2007. This was the day after my mom's birthday... the day I checked into the hospital for the first of several operations to replace my bones with titanium and whatever else. The first surgery was to cut off the blood supply to the tumor in the femur. I was awake for this one and very nervous. I had two nurses with me at the time... one whom I call the Nazi nurse and the other who became a friend for a while until we lost touch after moving so much. Without her kindness, I do not know how I would have gotten through that operation. I don't know about you, but sometimes a simple touch, a hand hold or even just someone laying their hand on me can create such comfort... for whatever reason. She was there and noticed every single time I started to worry more than I needed to during that procedure. I can't thank her enough.... To all you nurses out there, THANK YOU for being with us when we need you most. You'll never know how much you truly make a difference. As a patient, I know I don't express my thanks when I'm in the moment, but know that I am grateful... and likely, your other patients are as well. The next day was the big event... the main surgery.
My mom had her prayer group going for me. I don’t know when they began but I do know they created a prayer shawl that I cherish to this day and keep bedside. I took that shawl in with me to surgery with the surgeon's approval (you know it's a risky procedure when the surgeon lets you take objects in with you). I asked my family, including my then atheist husband, to pray over me pre-op with the shawl over my body. The doctors said that I would need "x" units of blood during the surgery (I can’t remember the exact amount, but it was something around four units) and then possibly more after the surgery in recovery… basically I would lose a lot of blood and this was going to be a long serious surgery.
Other than the miracle of prayer, how did I get through that surgery without even one unit of blood?
I did receive some in post-op, but not any during surgery! (Thank you to those that donate blood... you have saved my life, a few times over... if you don't donate blood, please do.)
Fortunately, I did not remember any “light” experience or ANY experiences during this surgery. But, when I came out, my pain scale seriously changed!!! OMG THE PAIN! Morphine was not enough. I did want to die. I will not lie… I was in shock, depression… I just didn’t want to get through it because it hurt so badly. The morphine was making my nerves amplified and I’m pretty sure I had superpowers for feeling things more than The Princess and the Pea. The doctors left a pen under a leg, which felt like a dagger. One of my family members got that out of there right away. Then, there was a hair in a very uncomfortable spot for everyone… between my legs near the hip area! OF COURSE! Here comes the humor in all this. Now, my mom had already been through Hell with me and all this cancer crap and now I am post-op, in severe pain, on drugs, with an abductor pillow strapped between my legs and completely unable to sit up to get this hair that is stuck between my legs near my hip! My younger and brother reluctantly agrees to reach in and grab it for me and he did with one perfectly aligned reach, THANK GOD! Oh, the relief! The poor guy! I'm ever FOREVER so so SO grateful for that act of kindness! (Humbling for us all.) If you have never had morphine, you won’t understand, but if you have, I’m sure you get where I’m coming from here. Back to the pain. This surgery changed my pain scale significantly. What I originally thought was an 8, was really only a 2 at most. Now when I go into a doctor’s office and they ask me where my pain is on a scale of 1 to 10, I always ask them if they want the REAL scale of someone who’s been through Hell or the normal person scale. I’m always astonished that they always ask for the normal person scale. Why don’t they want the real scale?! Why do we have this scale if we can't be real about it??? Whatever. Fine... I almost always just say 6 unless they ask for the real scale. That way, they understand I'm in need of assistance, but it's not too horrible that I have to head to the emergency room or call an ambulance. 6 it is.
I was in the hospital for quite some time. I ended up having a third surgery (compliments of the hospital) because they sewed in the drain tube. DAMMIT! Of course they did that. I was in a teaching hospital, a university... I'm guessing they let a student stitch me up. It was no small surgery either! I don't remember how long it was, though I'm sure my family remembers. We figured this problem out when one morning two student doctors came strolling in to try to remove the drain tube. This THIS was a HORRIFYING experience and one I wish my brain would have blocked out. It's a spotty memory, but here's a few of the moments I remember:
- the jerking and jerking of the tube from the side of my hip feeling like my entire hip and groin were going to be ripped out in one strong pull leaving me like a rag doll.
- one of the doctors actually climbing onto the bed on top of me to get to the tube from another angle... unsuccessfully.
- me screaming and then literally blacking out from pain.
- my parents running in just in time to save my life from the "tweedle" doctors in training.
- the raising of my bed so that weights could be hung from the tube in hopes to pull it out slowly.
- huge x-ray/scan machines to find out why this tube was not budging.
- the realization that if those doctors had been successful in ripping that tube out of my hip, it would have ripped out a whole lot more too! Thank God they didn't get it out!
...and I remember playing cards in the room with my family. I love my family. I have THE BEST family! I hate being alone... and I was NEVER alone in the hospital because of my family.
Then I went through Occupational Therapy inpatient for a couple weeks. My family and a few friends would come visit every single day. We would play cards, watch TV, joke… it was actually pretty nice (aside from pain and worry). My favorite day was when one of my brothers had to use the toilet. The bathroom doesn’t lock in rooms like these, so he made sure to tell us all that if the nurse comes in to clean out my bedside commode, please have her come back another time as he would be in occupying the toilet of which is needed for that job. Well, she came in while he was on the toilet and in usual Griswold form, we all forgot to tell her because we were focused on our card game. It was the scream from the bathroom and the scream from the nurse as she opened that bathroom door and saw my brother that made us all remember that he was in there! Oops. At least it gave us all something to laugh about... I'm not sure that nurse will ever recover. My brother will... or has... maybe.
I remember having to wash my hair with dry shampoo and feeling so useless. I remember having to shower down the hall in a pvc/net chair, basically, get hosed down. I felt so bad for the nurse who had to do that job. I didn’t feel bad for me at that time, just her. WHAT A WONDERFUL PERSON!!! It takes a very gentle soul to go into a profession that requires that of you. I remember being so thankful for everyone on that floor who came in to help me… Being grateful and thankful even through all the pain and tears. Without every single one of these people, I would not be here today and I'm sure I would have lost all hope and desire to live.
I don’t remember all the perfect timing, but little by little, I was able to sit up. I was able to move from the bed to a chair. I was able to walk with a walker. Eventually, I went home. I needed constant assistance for months! Not days or weeks, but MONTHS! My mom and dad basically lived with us and her best friend came down to give her a break and help me. Brothers and friends came out to help in shifts. The family and friend support I received is unfathomable. I went from a walker to crutches to one crutch to a cane... all of which took about 8 months before I was walking on my own again... what a process! I did go through outpatient physical therapy, which was depressing and difficult... maybe I'll post about that later.
Overall though, GOD is good and I am so grateful.
Through this process of healing, I sadly found out that some of the friends I considered close were not friends at all while others I didn’t think cared much were there for me. True friends are hard to find so when you find one, keep close. Always count your blessings.
The pain... it never went away fully. I do not think it ever will. I always have some degree of pain in my hip area. Most of the time, it's not enough to think about; but, there are days where the pain puts me out of commission. ...like today. Weather affects it, oddly, and I didn't realize rain was in the forecast. The hardest part of dealing with the pain is the reality of knowing that I sometimes have no control over what my day ends up being like. Today, I did manage to get some errands run, but then had to head home and lay down rather than finish off my chores... hours too soon. It's frustrating and I won't lie... I do get upset and angry that I'm not physically able to do everything all the time. It takes some self conversing to get to the acceptance point and just deal with it. So today, my laundry isn't done, my kitchen isn't clean, my bedroom isn't finished being picked up and I wasn't able to sit at the computer to work. Que sera, sera. I move to affirmations and thankful thoughts... thankful to have such a home to go to when in pain, thankful for the support I have around me, thankful to have a schedule that allows flexibility... so much to be thankful for, every single day. Now I deal with the pain... it's about a 4 on the real scale (that's about a 9 on the normal person scale)... it upsets my stomach when it gets up there... So, tonight, this post is being typed from my laptop in bed now that I've rested for several hours and am able to sit up a bit.... in my roomy room with my fluffy, warm duvet and millions of pillows... my four fur-babies are scattered around the room just waiting for me to move in hopes to get some attention.
Life is good.