Back to work

Wow, has it really been more than a month since we last posted?
Kev started back at work on Dec 1 with a new prescribed drug - Ritalin. No, he hasn't been recently diagnosed with ADD. It's used as a stimulant to counteract some the drowsy effects of his pain and anti-convulsant drugs and help with general fatigue. He also now has the distinction as being the first male to have a key to the "mothers room" at his worksite. So now Kev joins the group of pregnant and nursing mothers who take rest breaks throughout the day. He is thinking about adding some of his x-ray pictures to the display of ultrasound and newborn baby pics that cover the walls.

There and Back Again

A "before" and "after" shot of Kev's hip. (I'm not so sure about the fastener spacing on those screws...) In the "before" picture you can see how the lower pelvic bone fades away as it enters the socket (left hip). The socket had also been destroyed by the cancer. In the "after" picture all the "bright" objects are metal. A new socket was screwed and cemented into the pelvis. Some missing bone was replaced with bone cement - sort of a surgical bondo. The ball side of the joint was cut off and a new metal piece was cemented in.

We saw the Orthopaedic Surgeon on Tuesday and he was quite impressed with how fast Kev is healing. He double checked the length of Kev's legs and thinks he matched them up pretty good. Kev's been walking with a cane for a week and he'll start physical therapy (PT) next week to work on overall strengthening. He will also start radiation treatments soon on the hip region.

Inspired by his newfound mobility and having been cooped up for almost 3 months, Kev went to New Mexico for a week to visit with his family. (The kids and I stayed home since they had school.) He didn't quite make it through the metal detector at the airport without being "detected", but at least didn't have any problems carrying-on his stash of narcotics and anti-convulsants. Sounds like the flight went well and Kev is having a good time visiting with his parents, brothers, sister, nieces & nephews.

I've been home for 5 days now

Deneen did a great job of statusing all the gorey details of surgery and post surgery so I'll skip it. If anyone wants to see scars you'll have to let me know. I would like to thank everyone for their thoughts and prayers, it really helped my spirit knowing someone was out there thinking of me.

They let me go home Sunday. I could walk around the ward with a walker but still needed a little help getting into bed. My left quads could only move my leg an inch or so, but I was feeling pretty good and getting plenty of sleep.

It's amazing how fast the body recovers. I still have a long way to go but leg strength and mobility has come a long way and I think I might be able to make Don Pico's next Thursday if anyone is up for it.

Kevin

post op + 8

Well Kev is still in the hospital, but his foley catheter, IVs and drains have been removed - he is completely line-free! He has a large medical team who individually each have their own metrics he needs to meet before being released. Then after they are all in agreement the paper work needs to be processed. So he has met all the Drs. requirements, but his PT (physical therapist) still has some goals for him. So we are now thinking MAYBE today, but more likely a Sunday release. He really enjoys getting the your notes, so keep them coming.

post op + 4

Kev is continuing to improve. Yesterday the epidural was disconnected and today it was removed so now he is on oral pain meds. His hemoglobin was continuing to trend down so it was decided to give him a boost with 2 more pints of blood before it got too low. (Besides it seemed appropriate for Holloween.) The therapist had him up and walking around the floor with the aide of a walker. His central line in the neck was removed so he is down to only one IV in the arm. He still has 2 drains connected, but the Orthopaedic Oncologist says he may be ready to go by Friday. Thanks for all the good thoughts and prayers!

post op + 3

Just a quick update.
On Sat Kev was moved to a regular room. His pain level is very manageable. He has an epidural that allows him to give himself extra doses of pain meds with the push of a button, but he seldom needs to use it. The nurses had him sitting with assistance. Physical Therapy is expected to begin today.

post-op

The surgery is over. It lasted just short of 8 hrs. Kev is stable and in ICU.
The plan was to make an incision in the front pelvic area, resect the tumor from the pelvic region and attempt to resect the tumor in the groin. Then make an incision in the back hip area and do the hip replacement. After making the front incision, however it became apparent that the pelvic tumor would not be accessible from the front. There was a large tissue covering separating the tumor from the organs in the area. The tissue was healthy so the surgeon decided is was best not to cut through it. And the groin tumor was not going to be accessible without another incision that would branch off the first. Surgeons like to have smooth, continuous incisions otherwise the likelihood of it not healing properly increases as does the likelihood of infection. So they made a real-time decision to skip the groin tumor. After making the incision in the back hip area, they began removing the pelvic tumor. There was a considerable amount of bleeding so Kev started receiving transfusions. They then had to work quickly to remove as much as possible while minimizing blood loss. Once the tumor resection was complete and bleeding controlled, they moved forward with the hip replacement. This proceeded without incident. The surgeon did note that as the x-ray/CT/MRI indicated a large section of the lower pelvic bone was missing. All total Kev received 15 pints of blood, 6 bags of platelets and 4 of plasma.
After surgery he went straight to ICU. They want to keep him intubated (breathing tube) throughout the night so he is also heavily sedated and they have his arms restrained so he doesn't inadvertantly pull out any of the myriad of lines connected into him.
Tomorrow they will remove the breathing tube and he will "wake up" with no memory of today. Since he is going to be in the hospital so long, anyone who wants to send him a note can do so at:
https://www2.mdanderson.org/sapp/contact/message.cfm
(his patient number is 420668)

The pelvis

We met with the Orthopaedic Surgeons and Anesthesiologist team today and everything is go for tomorrow. We are supposed to be at MD Anderson at 5 AM, the surgery should start about 7 or 8 and is expected to last about 8 hours. Kev will likely stay in ICU Friday night before being moved to a regular room on Sat. They expect him to stay a total of 7-10 days in the hospital. The surgery itself is more complicated than a standard hip replacement (hence the longer surgery time) since they will be trying to remove a couple of large tumors near the pelvis in addition to the cancerous bone. The surgeon gave me a scan of the x-ray they took a couple weeks ago and they'll do another x-ray after the surgery. So that should be a pretty cool before & after comparison. Kev is very much looking forward to tossing out the pain meds and having better mobility. Thanks to everyone for all the good thoughts and prayers, it means a lot to us. I'll let you know how things go.

The end of the feet

The feet are pretty much wrapped up so here's some pictures to show the progress. The first picture was taken 9.20.06, sixteen days after the tumor removal (and two days prior to skin graft). Note the good granulation forming on the muscle, slightly less on the ligament. This is exactly what the plastic surgeon was looking for.
The next picture was taken 9.27.06, five days after the skin graft. Those are not stitches. The grafted skin just "sticks" to all the great granulation growth.
The next photo taken 10.07.06, a little more than a week later - healing up great.
I no longer have any restrictions on this foot and can put full weight on it. Tomorrow I meet with the Orthopaedic Surgeon to discuss the hip/pelvis.

On to the Feet

The story is coming out pretty confusing. I don't know if it's the blog format, my medication or it's a just a really confusing story. But let's get into the problems with walking.

In the Spring of 2005, I had tumor start growing in my left groin and another on the bottom of my right foot. The one on my foot was about the size of a hard boiled egg cut down it's length and glued to the sole of my foot. It was a real pain in the ass to walk on. I tried different shoes, cutouts in the soles and even started using a cane.

The chemo treatments I had in the summer kept things under control but by winter 2006, walking anything other than short distances was a problem.

The hip had the same problems except the tumor had eaten into some of the bone and we had a real strength issue. I also had a real pain problem putting any weight and even just resting the hip joint, this peaked in August and September. This was causing problems working so it was time to take care of it.

We spoke with the doctor's and decided to remove the the right foot tumor first. This won't solve everything. We also need to look at repairing the left hip joint and returning to cacer treatment program.

For the foot, the surgery cuts off the tumor and then applies a gauze bandage and a vacuum pump, they let the wound heel without skin for 10 days and then come back and complete the job with a skin graft.

This added up to about 6 weeks of sitting around the hospital/home as my foot is healing. Currently, I have probably another 2 weeks before the right leg is up and running.

0

Brain Surgery

Well, it's been a couple of weeks so I'll stop arguing that I didn't have brain surgery.

After the seizures returned, it looked like the old dead tissue had been slowly bleeding for about a year - doc was baffled by this one -. Bleeding causes swelling, swelling causes seizure. The doc goes back to the simple solution and everyone is happy. All we need is a good MRI and schedule a date for surgery, 4 August. I was still a little confused. I thought the tumor was long gone after a year and only scar tissue remained and I thought the tissue was very soft. Instead, I think we had liquid swelling and I was mis-reading the MRI - more work needed here on my part.

Prior to surgery, I had weakness in my left arm from the day of Seizures, that slowly improved each day. At first, I could barely touch my fingers together. 2 weeks after the day of seizures. I had brain surgery. T he surgeon expected some follow on weakness or paralaysis. After surgery, I noticicied no change only continual improvement for the next 2-3 weeks back to what I remember as normal coordination. Everyone seemed quite surprised that everything worked out so well. Hopefully, all I got was another scar and a few stories.

I'll try and fill the rest of it in.

March is spent balancing over drugging and the min the doc's will let me get through. Driving is off limits, so the the new standard is: is this too much medication to understand the other person . The overall body response is slow to these drugs so it took a couple of weeks to settle everything down. Most of these drugs are anti-seizure and anti-convolsents, the side effect is typically dizziness.

May and June end with good feelings about the old tumor( shrinking) and the possibillity of getting back onto a cancer trials study. I'll need to change the anti seizure meds to something newer but other than that everything looks good.

The doctor was very excited I was accepted to the trial, he and I believe future treatment will be in this form of treatment - more later.

But, a couple of days later I have another seizure, apparently, the 9 month old dead tumor still has a few trix up it's sleeve. Plus the medicine is pretty finicky at crashing if you come off it quick.

The next day Wednesday, is the day of seizures. I probably had 20 -30 seizures of my left hand or arm that day, after quite a few of them I would suffer paralaysis in that joint for some time. The seizures didn't make me pass out but they wouldn't go away, so we headed to the ER.

I leave the doctor's and head back to work thinking most of this looks good, the tumor looks gone to me except for some swelling and nothing new has popped up. I get to work sit down at my cube. I'm talking with a few workmates, when my left arm retracts uncommanded, I then go into convulsions. About this time, my co workers are getting worried about me having sezures. I'm loosing consciousness. It's only been about 15 seconds. My co workers are asking if it's my arm, I realize for the first this is a seizure and I black out.

The nuerosurgeon gives me some medication and says 2 weeks seizure free and things should be ok. About 1.5 weeks later, I had another full blown seizure and the next day I had a smaller seizure.

The doc's pull all the string's: No driving, extra sezure medication with associated dizziness.

This begins in March of 2006.

Deneen's been trying to keep everyone updated with my condiition and now I'll try it. My head isn't always clear and sometimes it takes a week to get where I think I should be in a day but I'll try and work thru those problems.

So if we go back to about August of 2005, the doctor's find a pea size tumor in my brain. This is really worrisome because (I think) fluids are not easily passed from the spinal cord/brain to the main body and conversely treatment introduced to the body won't make it into the brain.

Just for a caveat, I've been reading little books on how the whole body works. I want a nice clear definition like how a machine operates or an equation. Unfortunately, I'm finding lot's of vagueness with drug trials that showed 80% effectiveness. My point is when I explain how I think something works from a cancer aspect it usually means that's the best concept I could form. I would ask my doctor, I would tell him what I read and he would tell what he thought. Very few times did the doctor have a strong understanding of exactly what's going on but he did know what the procedure is to deal with it and he's done it a bunch of times.

Going back to last August, the tumor is kind of sitting on top of the brain, it's small, so the doctor wants to zap it. If they get it, it just fades away, if not we can operate. The procedure is in and out in one day. But it's also creepy. You walk in and they install this helmet/ring on your nogggin, of course this means 4 screws threaded into your skull and 4 numbing shots before that into the skull that don't hurt much but have a noise of a needle in crunching bone that gave me the hibigibi's. Once they get the helmet on they send you down for an accurate MRI locating the tumor to the helmet. Back to the laser room, someone or a new program does a little math. I get bolted down to the table by the helmet so the reference isn't loss ( good thing they drove those screws deep) and the laser takes about 5 shots from 5 locations so only the tumor really gets it good. I keep thinking about the guy with the helmet on in the dungeon from the 3 Musketeers. They take my helmet off and let me go home.

During this same time period, I am finishing up chemo for other tumor sites (lung, groin, arm pit, skin sites). It's a cocktail of 3 chemo drugs plus IL2 and Interferon, and I spent the summer taking the stuff. By Octoberish, we are done with chemo. I've taken as much as they will allow and I'm getting some neurapathy. We saw some shrinkage of some of the tumors, a lot shrinkage of some tumors and some didn't change. Nothing grew or appeared during this time.

What does this mean? Way to early in the story to go there.

In the mean time (late fall 2005), we get an MRI of the brain it looks to be healing up. We look again in Febuary and it also looks to be healing but the doctor asks if I've had any loss of control of the left arm because there's a little swelling on the brain going on right where the tumor was. He tells me not to worry about it, if I do have a little seizure they can treat that and if the swelling won't stop we can go back to plan 1 and operate. When I look at the scans, I think the tumor is gone and there's just some fluid floating around, we compare the latest scans against 2 monthes and things look better to me. So I leave feeling pretty good.

...to be continued