How about that arm?

Hey Y’all,

It’s been a while but I wanted to keep everyone in the loop of whats going on lately… a few weeks ago I had an appointment at U of M to check the progress of the bone graft addition to my arm. Well in the section of bummer news, my bone still hasn’t grown together. My surgeon reminded me that it is still pretty early to tell but did graze over the possibility of it it never growing back together. It was pretty harsh news to hear but in the grand scheme of things its not the end of the world. Lets face it, I still have my arm, albeit a low functioning arm but i can still pick light things up and drive etc. I am still healthy. I can live without a high-functioning arm. We just had really high hopes going into the appointment and left a little disappointed. The disappointment didn’t stick around too long, I have so much to be thankful for. Aside from my arm, I feel great. Little to no pain in my hip from where they removed part of my bone. I can move and run almost as good as before.

These pictures are a little old but show just a glimpse of the dedication from my girlfriend Ashley:

Image

Image

Image

Image

 

She took out all of my staples! What a trooper!

I have another appointment next month March 5th. I will be sure to hopefully be posting great news about my arm then!

Take care,

Jordan

 

meh, surgery

“You’re going to be able to walk right out of the hospital after two days in recovery.”

– My Surgeon

“LOLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL.”

-Me, still a week and a half after surgery

For some reason, my surgeon and her staff led me to believe this surgery was relatively minor. I’m sure in the grand scheme of things it probably was for her and her staff considering the work she does on a daily basis. But hot damn, my hip hurts, still.

The day of surgery was quite reminiscent of January 24th, 2012. The day I had my tumor removed and cadaver bone put in. We got to the hospital at 6:30am, waiting for just under 2 minutes and they brought me back to the surgical prep room where all the other pre-surgery patients go. In this long, skinny room,  sterile space where humility is thrown out the window. Wait, there isn’t any windows in this room…well, you get the point. You undress and throw on a pair of the lovely blue grippy hospital socks and a hospital gown. They start your IV. Ask you your name and address and why you are there 4 times over. They mark your incision points with marker. Also, this is your last point of contact with family and friends until you go into surgery. People are nervous, its a nervous non-comforting space. The last thing you see are people’s butts walking to the bathroom. Before you go into surgery you are asked to clear your bladder one last time so, every patient gets up and walks to the bathroom. However, the way some genius designed the gowns, everyones backside is exposed. I remember coming back from the bathroom and Ashley was just shaking her head at me because my butt was out there just catching some rays for all to see. Its always, the family members that notice too, the patients have other things on their mind…imagine that.

I was still conscious when they rolled me into surgery. My stats proudly displayed on a 60″ flat screen TV on the wall:

Jordan Schaefer. 28 years old. Male. 6’1, 188lbs. Expected surgery time: 2hrs, 45mins.

As I got to the last line of stats, I was out.

I woke up in post-op; another interesting place. Nurses seem like they are always in a hurry at this place. Rushing around checking vitals and trying to wake patients up from their nap. As if there were 1000 patients in this place and only 2 nurses. They want you to drink liquids and assess your pain levels. This is the place where you get the pump. Your own morphine pump in which the patient controls by a push button, its pretty great. I remember floating in and of consciousness. The nurse would stand hovered over me waiting for that grand moment when I would open my eyes again so she could ask me a million questions. Listen lady, I am more interested in sleeping right now.

I have no recollection of how long I was actually in recovery but, I do remember my family coming in and they said the surgery went very good. My dad told me they took three ‘scoops’ of my hip and placed around the non-union part of my arm. I was numb, I didn’t have feeling anywhere so all I could do was accept the fact that my surgery went really well. They next thing I know, I woke up and I was in my hospital room. All I wanted to do was sleep more. However, my new nurse had other plans for me. She was more interested in collecting my urine output than letting me sleep.

Since my surgery was around 2 hours this time, the operating staff opted to skip out on using a catheter. I remember fist-pumping my dad after surgery saying they didn’t cath me. For those of you who haven’t been cathed, you just wait. It’s pure bliss. However, this did pose a problem for me because I had to somehow go the bathroom to get this nurse off my back. I tried everything…slamming water, coffee,  juice, I still couldn’t go. Mind you, I can’t stand up so I am on a 45 degree angle in my bed trying to put some output in a plastic jug, not the easiest thing in the world to do. The nurse kept popping in every 5 minutes to see if it worked. She had this sick look on her face as if she could not wait to cath me. Maybe its her thing because she was all about it. I relented and let her cath me. Its a humbling and seriously uncomfortable experience to say the least but, it worked.

I was only in the hospital for a day when they released me. Initially, they had me staying for two days but I guess, someone else needed my room. Before I could be let go the physically therapy staff came in to see if I could stand and try walking with a crutch. It was extremely difficult at first but I got the hang of it. Since the crutches were hospital property, they had to wheelchair me out to the car. At that moment, I realized its the little things you don’t thing about post surgery. How am I going to get in this car? How do I sit down? How do I get in the shower? All of these things are going to be a problem.

The car ride home was uncomfortable but I was somewhat at ease with the morphine I still had in my system. We arrived home that night and I remember the pain starting to hurt so I took the prescribed pain meds and went to bed. I remember waking up at 6am thinking my bed was on fire (funny story about beds being fire for another time). It literally felt like someone was taking a lighter and moving it up and down my thigh under where they removed part of my hip. My leg felt like it was on fire and that my skin was melting off of my leg. It felt hot and wet. I took more pills but nothing seemed to make it go away. We called the on-call surgeon for advice but, he said it was supposed to feel like that. I feel like I have a higher pain tolerance than normal considering what I have been through but this pain wasn’t even on the same scale as pain I have experienced before. We told him something doesn’t seem right but he assured us this was normal. The pain persisted, we tried putting bags of ice on it. Adjusting the way I was sitting. I tried crutching around but nothing seemed to help. We called him again, same thing this is completely normal…blah blah blah. I remember thinking this guy doesn’t know what he is talking about and I needed to call someone I could trust. So we did, my friend Kenny is a doctor and I called him right away. Mind you, he is not a surgeon but the kid knows his stuff. He said my leg should absolutely not feel like this and asked me to try and add an over the counter pain medicine like Motrin to the recipe of pills I was already taking. Well in a couple hours later the pain subsided. It worked! I can’t thank you enough for your help Kenny!

So where are we at today a week and half after surgery? I am starting to walk again on my own. I am sure it is uncomfortable to watch me hobble around but everyday I can do a little bit more. I am still trying to find the right position to sleep in. I think my incision area on my hip is still swelled up because if I move in a particular position, it being sitting or standing, I get an extremely painful jolt down my leg. I haven’t ever had a pinched nerve but this is what I would assume it feels like, not pleasant. The area around the incision is still numb to the touch. This is a little concerning for me because they said there is the potential for short term or permanent long term nerve damage. My post op appointment is this Wednesday so I should be able to figure out what is normal after this procedure and what isn’t. I just have this fear that they damaged part of a nerve and that they are going to have to try and repair it but, I am keeping my fingers crossed.

All in all, this surgery was a lot tougher than I expected. I definitely didn’t walk ‘right out of the hospital.’ I am still in pain but as to be expected I guess. I am learning to walk again and figure out what my new ‘normal’ might look like. Again, I just want to thank you all for your cards, prayers, and good thoughts sent my way during this. I will continue to update when I have some more information after Wednesday.

!WARNING! GRAPHIC POST SURGERY PICS BELOW:

photo 4 photo 1 (1)

 

The first picture is the incision they did on my hip. Its about 3 inches long. The next picture is on my arm. The used the same incision line as before but they didn’t open it up as big as they did last night…yummy!

Take care,

Jordan

hey, its me!

Hi Friends,

Long time no talk! I know, i’m bad at this. So what is going on with Jordan?? Well, surgery. Soon. My stupid humerus bone still doesn’t want to grow together. Until the bone grows together it is still a ‘dead’ bone. Take a look at my recent bone scan selfie:

Image

 

As you can see there is a significant gap in my left humerus. Thats not good. There is still the cadaver bone in there but it isn’t lit up red like the other bones because it is ‘dead.’ As previously discussed my surgeon wants to do a bone graft to hopefully fuse this non-union together. So next Thursday, November 7th, I will be having bone graft surgery to hopefully get these bones growing together!

I had my pre-surgery physical yesterday and everything else health wise is going really well. I am not going to let a stupid surgery get me down. This will be a relatively minor surgery compared to the last one : ). It will be three hours long and they expect me to stay in the hospital for a couple days in recovery. They also want me to be off of work for a couple weeks but…we’ll see about that. All in all, I am in a really good state of mind heading into this surgery. I’m not on chemo and I am feeling great, this will be a breeze. Just another day at the office. 

So what happens if the bone graft doesn’t work? WELL DON’T WORRY ABOUT THAT, ITS GOING TO WORK. But seriously, if it doesn’t work I don’t really know what the other options are. Regardless, it would be nice to have functionality in my arm but to have my health and to where am I at now, everyday is just a blessing. Seriously, it is….

As always, thank you for all your constant prayers and continued support.

Love you all,

Jordan 

Nine month checkup!

Hey y’all!

I am in Texas now for work so I thought I would add a little Texan flavor to this post : ).

Well a couple weeks ago I had my nine month checkup and I wanted to share the good, the bad and the ugly…

Overall, great news! Still cancer free! My lungs are clear as well as everywhere else. My doctor and surgeon continue to be impressed with my overall health and functionality of my arm. My counts continue to be in the ‘normal’ range and my weight is back to my normal weight.

Now the bad, my stupid bone still didn’t grow together! What is the problem with it?? My surgeon keeps scratching her head and reiterated the fact that they never have had this problem with the type of surgery she performed. So what’s the next steps? Well I am going to try a high dosage vitamin D pill in the next couple months to hopefully spark some growth. While the likelihood of it growing is remote I figured I don’t have anything to lose.

The ugly…if it doesn’t grow together in the next couple months I will have to do a bone graft. My surgeon explained that she would remove an inch by inch section of my hip and fasten that to the non-union. As you can imagine, I am quite thrilled for her to open up my scar again and have surgery. NOT! She mentioned that there is an 80% chance the bone graft will work. If it doesn’t, I will need to have surgery every five years or so to keep my plates and pins tight and in place. Ahhhh I will take option 1 please.

Other than that, I can’t really complain and even if did there is always someone that has it worse; like a gentleman Ashley and I met while we were at my last appointment. I can’t remember his name but he was a cop. He found out the Friday before Memorial Day that he had sarcoma in his nerve in his left arm. 2 weeks later (the day after my appointment) they amputated his arm. They permanent look of fear was pasted all over his face. I couldn’t imagine. You have two weeks to have your left arm, what do you do? He was however, quite excited to own the title to be the first cop in America with a robotic arm. Meeting him really put my stupid bone not growing into perspective. At least I still have a somewhat function arm. Most of us are all so fortunate to have two functioning eyes, ears, legs, arms, etc.

With that friends until we talk again, get out there and enjoy your arms! And your overall health : )

Jord

6 month check up

*This was posted on 3/20/13, for some reason it was sent out to subscribed followers but not posted on the blog, sorry!*

Hey All,

It’s been a while! I thought I would catch up everybody with whats been going on…

Well… on March 6th, I had my 6 month check up and…STILL CANCER FREE!!! It is so interesting living your life in 3 month increments. My girlfriend and I love to travel so it is hard planning for trips because we never know what could happen. It actually is a good reminder to enjoy every day and not to get too caught up in the future. My friend Matt always says “Therefor do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Great words to live by in any situation, sick or healthy. NOW DO IT…

Okay okay back to March 6th…we did receive good news but it wasn’t all good. My bone still hasn’t grown together. The bone stimulator failed me! I can’t help but think I wasn’t wearing it right? Maybe I was given a lemon? Bad batteries? Maybe my arms are so full of massive muscle that the stimulator couldn’t work?

Either way it didn’t work, so now we have to make some decisions on what to do. My surgeon gave me the options and like I said prior she is pretty much a no BS lady.

1) Do a bone graft. Remove bone shavings from my hip and place on the non-unioned bones to hopefully spark growth.

2) Continue to wear the bone stimulator and hopefully it just needs more time. She said it is not very common that it wouldn’t work. The rep who fit me for the bone stimulator said the only time a bone stimulator didn’t work was with a heavy drinker and drug addict. It feels good to be in such great company.

3) Do vitamin D infusions through my Port at a Cancer Center in Grand Rapids to hopefully help the bone to start growing.

I chose option 3. I haven’t heard anything yet about scheduling, how long it takes? How its going to make me feel? The internet also seems to be quite vague on the subject as well. So we are stuck playing the waiting game again to find out when these infusions could start.

My surgeon said we really need this bone to start growing together. She said if it doesn’t, the hardware she put in my arm will eventually break and then she will need to hammer it back together. I could puke thinking about it… GROW BONE GROW!

So lets all hope this bone starts growing either through the stimulator or the vitamin D infusions otherwise I will be going back under the knife. I will keep you posted once I know the infusion schedule but hey! still cancer free, I’ll take it!

Keep Smiling,

Jordan

lame.

Guys, I just read through my blog. You must be so bored. I seem lame. I do have a life outside of cancer. Here is some things that I do when I am not blogging about cancer…

We went on a cruise in January!

Image

 

 

Haiti! So pretty…

Image

Our lovely cruise friends, Scott and Alyssa ( and the beautiful ashley!)

Image

 

We ran a 5K (such a dumb idea, kidding…we had fun)

 

Image

We got a puppy! Meet the love of our life, Harper!

 

 

 

 

 

 

Image

 

We went to see a couple of our favorite bands Matt & Kim and Passion Pit. 

 

Image

 

I promise I do have a life! I will try to post more pictures…

Jord

oh hey!

Hey There,

its been…a while. Good news, I am still cancer free! I had my most recent checkup at U of M on November 28th. My surgeon continues to be impressed with my movement and the way my scar has healed. She often has that look of …”Wait, what did we do again? Did we really do surgery on you?” I take these Taylor Swift shock impressions she does as a sign that everything is healing way better than planned. We did however have some downer news…the bottom part of the cadaver bone they placed still has not grown together with my humorous bone. The top part did while I was on chemo, the bottom part still has not. This was a cause for concern for her because if it doesn’t magically grow together I will need to have a bone graft done where they shave off parts of my hip and place around the non-unioned bones to help growth. I mean surgery was fun the first time but I would really like to stay away from the knife for a little bit. This last ditch effort to make these bones grow (besides downing pure milk from a cow utter) is to wear a bone growth stimulator. A what?? I said the same thing…so I googled. It looks…like a tether. So not only do I have this awesome scar, I now have a tether like device around it with an Al Borland beard. Something about me just says…Hey he looks like a nice trusting gentleman =). I recently was fitted for my tether and it looks like this:

Image

I have to wear it for 3 hours everyday for 3 months. They will do X-Rays after the 3 months and hopefully this device will do its thing so I don’t have to have another surgery.

My oncologist was also happy to see that things were going so well. She wants me to continue on with anti-depressents they prescribed to me about halfway through the treatments. I really don’t think they do too much for me but she is the doctor…maybe I don’t want to see what I would be like not on them = ). It’s really interesting being on the ‘survivor’ side of life. I mean to think about where I was a year ago compared to today is mind boggling. What a difference a year can make. I wish I could say that cancer wasn’t on mind though. Thoughts of re-occurance still persist and sometimes puts me in a dark place. According to my google research, this is quite common. They call it survivors syndrome. It’s also common to look back and wonder why you were spared and so many others aren’t. It just doesn’t seem fair. It just reminds me that my work on earth isn’t done. I am still here for a reason. As I have said before we are all here for a reason. You are reading this blog for a reason. I am a cancer survivor, a combination of the old Jordan and the new Jordan. I am still me, I am just a changed me. My life is forever put into perspective that at any given moment any one of us could be in that hospital bed. As the holiday season is here, take time to give thanks for your health and the health of those around you. If you have someone in your family or know someone that is struggling, say a prayer for them, do a random act of kindness for them, most of all, just let them know that you care and are there for them. It’s what got me through this past year and what continues to keep my going.

Happy Hooooooolidays,

Jord