Home..Finally

Michelle came home yesterday and as expected she was very excited. The kids and Devon made a banner for our garage saying " Welcome Home, Mom", the kids were excited for her to be home too. Maybe she'll have better luck with them listening to her because whenever I say anything it seems to go unnoticed. So she is up and about when she needs to be but is going to be spending much of her time in bed for the coming weeks. She has a busy week with several Dr. appointments and hopefully physical therapy will get her stronger and back to normal sooner rather than later.

Turning a corner?...

Michelle got out of bed and walked the whole floor yesterday to prove to the therapists that she does not need to transfer hospitals. They agreed that she is strong enough and agreed with her that she can go home without staying any longer in the hospital. She does still have the chest tube because the blood thinners that she has are causing her chest to continue to drain. It is draining less and less each day so it is just a matter of time before they can remove that and within 48 hours she should be home. I am crossing my fingers thinking that we are getting close to ending this recent nightmare. knock on wood, wish upon a star, pulling eyelashes, howling at the moon...any other ideas?

Sigh.....

Michelle has blood clots in her arms from the many, many IV's that she has had over the last two weeks. They are loading her up with heperine (sp?) to loosen things up and they "say" that they should dissolve on their own. They also mentioned to her today that they want her to stay in the hospital for awhile longer, even after the chest tube comes out to rehab her and get her stronger before she comes home. Noone seems to know how much longer that will be but it won't be at the University of Utah because we are not covered there for rehab apparantly. SO, they want to move her to the Intermountain Medical Center in Murray to get going with that sometime in the next few days. If you are planning to go visit her, I will update the blog once she has been moved or as soon as we find out when they are going to move her. STAYING POSITIVE but getting ready to hit something really hard!! :)

Longest stay in the hospital so far

Michelle has now spent 12 days in the hospital making this her longest hospitalization so far. She is getting stronger everyday and seems to be making process. Her biggest hang up right now is that she still has her chest tube in. She was up and walking for really the first time yesterday. I didn't get a chance to see her as I had work and class yesterday but I will be able to see her tonight before heading to the Jazz game and sitting in a suite! (Jealous?)
I'm excited for the night out after visiting with her as this will be a nice distraction from reality for a couple of hours. Like I said she is doing better all the time and will be able to come home within a day or two of her tube coming out. She is on the 5th floor of the University Hospital if you would like to visit her. Please call her and if she is feeling well enough for company she will answer, if not, don't be offended, she doesn't answer all the time when I call either! :)
She has been able to see the kids a couple times now since getting out of the ICU which has really cheered her up and at thew same time depressed her as she really misses the kids and wants to get home to help take care of them. Thanks for all your prayers on her behalf. She'll be home soon.

Out of NCCU

Michelle was moved out of the Nuero Critical care unit na dmoved to much more relaxed room on the 5th floor of the Univ. Hospital. Not sure if they will mover her to Huntsman or when that will happen. She cannot go up to Huntsman without her chest tube being taken out anyway so that could happen in the next 24-48 hours.
She had a vicious mirgraine and a lot of nausea yesterday that really kept her from doing much of anything. She slept a lot of the day due to the valium and antinausea drugs that she was on. She is getting stronger but it seems that everytime she starts making progress, something gets in the way. Still no word on when she will be coming home, best guess is mid week but I wouldn't be surprised to see her stay until next weekend as she is still on plenty of IV painkillers.

Doing better everyday

Michelle is looking better, feeling better and making more and more progress all the time. She was sitting up in a chair today for about 30 minutes, I haven't seen her incision but her Mom said it's a good one. We're planning on telling our Grandkids one day that Grandma got in a fight with a shark.
She is much more alert than she has been and seems to be recalling conversations better than she has the last couple of days. One reason I haven't wanted anyone to call her is because she really still sounds worse than she is. I guess that happens when you have a tube shoved down your throat twice in a week for surgeries?! Hopefully her chest tube will come out in the next couple of days and we can get her moved to Huntsman Cancer hotel..errr, Hospital. She wants to post something really quick so from here on out in this post, it's all her...

just want to say hi and let everyone kow I am doing fine and having more progress everyday. It's hard to have visitors because of the hospitals restrictions. I look forward to seeing everyone soon!

Making progress

Michelle had the procedure this morning to get all the fluid and blood out of her chest. It went well, they only made two small incisions on her right side and inserted two tubes to clear everything out. They removed 750 cc's thus far. They say she should be able to move up to Huntsman very soon without a problem. This should help lift her spirits and allow more people to see her without all the restrictions. Also, Huntsman has looser pain management restrictions than the U. Huntsman really does a fantastic job at getting people comfortable without worrying about patients becoming addicts. University hospital is under such tight restrictions and it seems like every nurse is afraid of losing their job everytime you ask for more medication. Michelle's TV in her room doesn't work so she is left with nothing but a wall to look at. It sucks but she knows it is a matter of time before she gets into better circumstances.
The rest of us are managing, it's so hard watching her suffer every day but she is such an inspiration to everyone she comes in contact with. You can tell that she has had it with hospitals, surgeries, drugs, doctor's and nurses, but there is no way she is going to give up anytime soon. Don't bet against her, you'll lose everytime!!

Good and bad today

Good news-They seem to have a good idea of how to control her pain. They did sit her up this morning and they have bed propped up to about a 30 degree angle. She has been able to eat some today, this is the first time since her surgery that she has had a chance to eat anything.

Bad news-The fluid in her lungs has not gotten any better. The tube that they put in her chest isn't working. She has to have a procedure done tomorrow morning to clear her lungs. They shouldn't have to open her up with the exception of a couple holes between her ribs while inserting a camera to make sure they take care of the problem. It is one more thing, like she hasn't gone through enough but this should help her feel better and breathe better. Her right lung has collapsed and this will reinflate it.

I did run up to Huntsman to talk to some of our allies up there to see what could be done to get her a room at Huntsman. The university is a fine hospital but they simply do not provide the same level of care. Michelle hates it there and will be much happier and comfortable at Huntsman where she can order food that is edible and have a staff that specializes in cancer care. Once she is out of the NCCU (neurological critical care unit) we will hopefully have a chance to get her moved. We do not know when she will be coming home, my guess would be in a week from now. I will update again tomorrow.

Update on Michelle from Justin

I went to see Michelle after work today, fortunately her Dad spent most of the day up there with her. She had a rough night and hass had trouble getting on top of the pain but it seems like they might be turning a corner tonight in getting her comfortable. She is still laying flat and really hasn't moved since getting out of surgery last night. Her breathing tube was removed this morning and as of tonight she was awake and aware of what was going on around her.
They did a chest xray earlier today and it showed that she had quite a bit if fluid in her chest. So far her oxygen saturation has been fine and there isn't any immediate need for a chest tube. They will have her sit up in the morning and get her moving a little more constantly.
Bottom line, she looks much better and seems to be feeling much better than she did last night. She wants everyone to know how grateful she is for all of you that care so much for her. She keeps answering the bell each round and fighting this thing as hard as she can. I'll likely add another update thursday and update everyone on how she's doing at that point.

Diagram of what they did in surgery yesterday

I know this a a very crude picture and really lacking detail but hopefully this gives everyone an idea of what they did in surgery yesterday. This is according to what the Dr. told us yesterday following surgery. Looks painful huh? If we get actual pictures or better perspectives of what they did, we may add those later. She did have the breathing tube removed this morning and her Dad is with her today. I will be seeing her later tonight after work. She still cannot recieve visitors and before anyone goes to the hospital, please talk to Leon or myself. Thank you.

Michelle's surgery update

Michelle’s surgery was wrapped up at roughly 9:00pm. Leon, Michelle’s dad was there to meet the Dr. I missed talking to him by about 10 minutes. He said that she did very well. I will summarize with some notes that Leon took following his conversation with the Dr.:
The surgeon removed T9-T10
Spinal fusion was between T6-L2
Most of a rib was removed either on 9 or 10 not sure which.
The incision follows (from what we gather) her spine and along the rib that was removed.
They DID NOT get clear margins. (This means that not all the cancer was removed, there is still some in the operative area that they were unable to get to considering the spinal cord, etc.) There is also a questionable spot that was inoperable on T11. Hopefully radiation will get the rest, we’ll see.
The tumor fortunately bled very little thanks to the procedure she underwent on Saturday. These types of tumors tend to bleed a lot so this was good news.
She is and will continue to receive blood transfusions tonight.
She will experience quite a lot of pain over the next few days especially during her stay in the hospital. The soonest she will be out will be Saturday of this week.
For what it’s worth, the Dr. couldn’t see any of the spots that had been in her lungs but future scans will tell that tale.
She is still intibated and will be through tomorrow morning.
She will be in a very critical care unit of the hospital and cannot receive visitors, phone calls, etc.
It will probably be towards the end of the week before our kids will see her. Leon and I are waiting outside in the waiting room and have not seen her yet. It will be close to midnight before we will be able to see her.
This is all that we know at this point, this was a very invasive procedure, more so that I think either of us imagined. Michelle has been through more than anyone I know personally and I know that many of you can say the same thing about her. I do not know how she continues to fight through surgery after surgery and all the pain that comes with it. She refuses to give up her fight and I know how grateful she is for all the thoughts and prayers on her behalf, as does her family and I.
For my sake, please continue to follow this blog as I will do my very best to update it whenever I have any news this next week. It is too difficult to respond to texts, emails and phone calls from everyone individually. If you are restless and need to call me for any reason, please do so and if I can get to your call I will.
Again thank you all for everything you have done for our family. I will keep everyone posted! J

Update from Justin

Michelle asked me to update everyone on her appointment from earlier today:

We went to the U to talk to her doctor in Neuroscience, Dr. Kenneth Yonemura. Anyway, he had been in contact with Michelle's radiation oncologist and came to the conclusion that surgery would definitely be the most effective treatment option as radiation is not going to be very effective on a tumor this size and this close to her spinal cord. The tumor is in the center of her back, pretty much attached to one of her lower ribs and has encroached into a couple vertebrae in her spinal column. To make a long story short, they are going to have her come up and be admitted tonight so the radiologists can monitor the blood flow into the tumor. There are certain tumors that I guess have a tendency to bleed quite a bit. Of course the tumor Michelle has is this type. They will do whatever they can to cut off the blood supply to the tumor through some procedure with sponges and coils, these are technical terms of course...
She will be home tomorrow afternoon likely and will go back in for surgery on Monday. The surgery will be roughly 8 hours and will include removing the tumor, part of her rib, and the affected vertebrae (probably 3). The plan is to remove as much of the tumor through surgery as possible and than in two or three weeks start radiation to zap the rest.
She will likely be in the hospital for 4-5 nights and will be limited to light lifting (that leaves our baby Colton out) for a couple months. If there is a silver lining to all this, the area of her back that is affected is the middle portion that really stays pretty stationary. It's isn't anywhere where a lot of bending takes place so hopefully this means she will get back to "normal" quickly.
We did ask about the areas in her lungs that were showing up in her last two scans and he couldn't "see" anything obvious. We are hoping this means that her interleukin treatments are working everywhere else and that this will be the last hurdle in her recovery. On Sunday, her dad, brother, brother in law and I will give her a blessing and hopefully provide her with as much comfort as possible as she will likely have a very tough week ahead of her. Thank you to all for your prayers and thoughts on her behalf. You have all been such a blessing to our family and we thank you for what you have all done for us however big or small.
On a personal note, please limit calls to Michelle this weekend as she will be very busy in putting a schedule together for me for next week and getting packed for her week in the hospital. As you can all understand, it is very difficult to go over the same details with every different person that calls. Thank you!!!

After a few phone calls this morning, this is what I know. I know I will be having surgery first, then a couple weeks later I will be in radiation. I will be doing another MRI this afternoon for a different view of my spine. I will meet with Dr. Kenneth Yonemura, a neurosurgeon in the morning to discuss the surgery and figure out how emergent this surgery will be. That's all I know for now. I will write more when I know the date of surgery and try to figure this all out. Frankly I am getting a little nervous. It's my spine. Scary

So, on my way to go to the dentist today and later back to Huntsman, I got a phone call asking me to do an MRI tonight too.
So, I had my teeth cleaned today for the first time in almost 5 years!!! I know, I've neglected them and to be honest I was scared that he was going to find massive cavities. Well, I didn't have any cavities and he said he wished everyone had as good of teeth as I do! What a relief! My teeth feel so good too!
So, I went up to Huntsman and met with Dr. Hitchcock. She showed me the PET/CT that I did in December and then the CT they did on Monday. It definately has grown, not a ton, but enough to scare me. I couldn't see a separation between the tumor and my spinal cord. They keep asking me if I am having any neurological problems, like numbness or loss of motor skills. I'm totally fine, except for the pain from this thing. She also told me that the reason for the MRI is so that a neurosurgeon she has lined up can look at it and they can decide together if we should do surgery and debulk the tumor and then do radiation, or if we should just do the radiation. They will meet tomorrow morning and then I will hopefully find out tomorrow sometime. It sounds like if we go the surgery route, it would be pretty quick, like within the next week sometime. Everything keeps changing so much that I'm sure this could change too. I will write tomorrow if I find out anything at all. Otherwise you'll have to wait like I will be. Ta Ta for now

Things didn't go as planned

I went up to Huntsman for treatment planning for the SBRT Radiation treatments. They basically made a full body cast for the bottom half of me from head to toe. It was really cool. Then they stuck a sheet of plastic on me from waist down and then vacummed all the air out. This was to ensure I would hold exactly still. This is a very precise science and they had to have it perfect. The nice thing is that I didn't have to get a new tattoo. They could go off of the tattoo I got from my last round of radiation. (It's a black dot as big a a pin point). They did a CT scan to help plan out the treatment.
When I was at my mom's picking up the kids, I got a call from Dr. Hitchcock. She asked how my back is feeling. I told her the pain has gotten a lot worse. She said she isn't surprised, she also said that the tumor has grown and is now in my spinal column and that we can't do the high dose radiation. It is far too dangerous. So, I will go in on Wed (tomorrow) and do another scan and get ready for regular radiation. We'll do that for 3 weeks and if the tumor has shrunk and out of the spinal column enough, then we can do the high dose radiation and zap that sucker! I will start treatment as early as Thursday if they have an opening, if not I will start Monday.
She also put me on Steroids to help with the swelling, inflammation, and pain. I am not excited about this at all. Last time I was on these I put on 10 pounds in 2 weeks, plus they make me irritable. She didn't say how long I'll be on them, probably at least till the pain starts to go away.
So, here's life throwing me another curve ball I wasn't expecting. I had a feeling that it was going to happen this way though. The pain in my back all of a sudden got so much worse last week.
At least the tumors in my lung are shrinking. Something positive to look at.
Other than that, things are going really well for us. I have most of my energy back now and feeling pretty darn good. The kids are loving that I have more energy to play with them too.