Monday, April 25, 2011
We Have a Plan!!
We are meeting with the pain management medical oncologist at 3 and then will be on a plane back to Alabama tonight. Thanks for your prayers. Love to all!
Be back in touch soon!
Michelle
Friday, April 22, 2011
Friday
If you don't know what complete boredom will do to you... well ,I will tell you! It makes you go to the Zoo! Yes, the Zoo. We were so completely out of our minds desperate to find something to do that we piled on the shuttle and went to the ZOO!!! :0
I have to admit while it was lovely to be outside strolling in the beautiful weather, it was quite odd to be visiting the Zoo without a companion under the age of 5! :) We did have a nice afternoon and laughed at the lazy lions and crazy monkeys. We tried a Root beer float, but nah, not very good at the Zoo.
As we were leaving the Zoo around 5 pm I got a call from the hospital on my cell phone and turns out they had been looking for us all day! (The nurse assigned to trying to reach us had been calling mom and dad's house phone!) Anyway, she told me that they had wanted Dad to come in and see the GI doctor today because the PET scan revealed his tube was not in correctly and they worried he would experience some awful side effects over the weekend if it wasn't fixed! Can you believe it? Of all things, the tube is not in correctly. What does that mean? I have no idea, but since he isn't experiencing any "symptoms", they decided to wait until Monday to discuss it at our appointment. We are to go the patient film library and pick up a copy of the PET on Monday to take home to Dr. Short as soon as we land in Alabama and get him to fix it if he makes it that long without any problems. Please pray that is the case. So far, so good.
Other than that, we haven't heard anything today except some reports on line that tell what the doctors saw from their initial exams. All things they have told us already, so nothing new.
Tomorrow is golf day on TV, so that should be nice. We hope to get dad "out " for dinner tomorrow night. So far, he is on board with that.
My aunt came through her surgery and appears to be doing as expected. She will be in ICU for a few days so continue to lift her up in your prayers. Keep praying for our appointment on Monday at 10:20! Set your watches and alarms to remind you! We will need your prayers not only for results, but for peace, low anxiety and calmness as we accept what we are told and make our plans to move forward.
Thank you! Happy Easter! If you see my sweet, adorable husband out and about or one of my precious children...please give them a hug (or a high five!) from me! Love to all!
Michelle
Thursday, April 21, 2011
Thursday
The doctors were supposed to meet tonight as they apparently do every Thursday to present new patients. I am praying that some positive, good things come out of that meeting!!! Please pray with me. All in all today was a pretty good day. The food here at the hotel and out and about in Houston as far as the shuttle will take us is absolutely wonderful.
We are still trying to shuffle the schedule around and get in with the Pain Management Team and/or the Speech Pathologist tomorrow because otherwise we have no appointments on Friday. We will stay through the weekend and wait for the appointment with dad's assigned oncologist, Dr. Tsao, on Monday morning.
It may be a long weekend, but we will survive. We pray for some good news on Monday morning that there is something they know to try that we haven't already heard at home. We pray that the logistics of whatever treatment they recommend will be workable and fall in to place. I especially pray that there is a plan to simply make him feel better and to regain some strength. I have given it all to God and feel good about it. It will all work out and be just fine.
Sometimes, I walk through these halls with a lump in my throat. Not only because of why I am here or because I miss my family terribly, but for all the other people here!! I honestly am shocked at the number of sick people here at this "cancer center". There are buses and shuttles and more employees than I can even begin to count. All because of this horrible disease called cancer. It looks like Disney World, but its NOT Disney World, that is for sure. Please pray for these people. There are a lot of scared, stressed, hurting people. I see a lot of Bibles around here too and that is such a blessing to me. God calls on His people to TRUST in Him and not to be afraid and I see such evidence of that surrounding us here. It is awesome! Everyone smiles at each other with such compassion. Amazing.
Also, if you could add my Aunt Faye (Dad's sister) to your prayers. She had part of her colon removed recently and had some blockage that they could not repair. She is going in tomorrow for a surgery to remove then entire colon. She loves her baby brother and has prayed without ceasing for him and she needs us to lift her up, flooding the gates of Heaven with prayers for her. Thank you!
Michelle
Wednesday, April 20, 2011
Wednesday Update
We saw Dr. Myers and he was very nice, effecient and informative. He like the other doctors just wanted to lay eyes on him, go over his history (again without notes and very impressive!) and ask a few questions. Also, like the other doctors, he couldn't really answer many of our questions because he hasn't had his scans done yet and until they see the most recent ones, they do not like to give any opinions. He did recommend that dad see a speech pathologist to help with talking and swallowing better. He also suggested that we meet with the pain managemnet team to go over all of his medications to make sure that he needs to be on all that he is on and how to best manage his pain while not completely knocking him out. I am especially excited about this. I just think there has to be some way to manage the many side effects and radiation treatments without feeling so sluggish. Dad really wants to feel some strength coming back. He is tired of being tired! Although Dr. Myers stated that any type of surgery is not likely, he would not rule it out until the team of doctors and surgeons meet to discuss his case after the scans. He made it clear that from a medical standpoint it is very unlikely that they can "cure" him from this cancer, but that they are here to meet, put their heads together and see what they can do to keep the cancer from spreading and halt it. Also, to do what they know to do to increase his weight, energy level and general well being at the same time. I would be very pleased if that is the solution they present to us on Monday. Whatever they decide in their best medical opinions, we will be grateful and know that God is in control! I still believe that God can heal dad and he can be one of the medical examples they talk about for a long time here! Wouldn't that be awesome?
We were able to move from the Hampton Inn to the Rotary House today and it is like a dream! The entire hotel operated by Marriott caters to cancer patients and I can't say enough nice things about the place. Dad has a recliner, plenty of blankets, room service any time of day with any food he desires..(like Eggs Benedict at 8pm!), several full service resteraunts, shuttles to all the clinics and a direct walkover to the main building where the Head and Neck center is located. It is great. There are kiosk throughout the building where you can print your doctor appointment schedule at any time and check for any changes and/or updates. They had a glorious praise choir singing in the atrium today with songs like "Oh Happy Day, You Are My Sunshine and Lean on Me." The whole place was clapping and singing before it was all over. Just amazing. On a great note for me..My FaceTime actually worked on the wifi here (it didn't at the Hampton) and I got to see Stephen and my babies while talking to them tonight. It was the best!!!
Tomorrow is scan day. LIFT him up!
Love,
Tuesday, April 19, 2011
Catching Our Breath
We arrived Sunday evening around 9 pm and were greeted by a personal driver at the airport arranged by MD Anderson. It was really nice and he even had a new Ipad2 that I got to play with on the 30 minute ride to the hotel! Our first appointment was at with the business office at the hospital Monday morning. That went just fine and then we were off to meet Dr. Tsao. She and her staff were wonderful and explained the whole process to us. She went over everything she knew about dad's case (without notes I might add!) She started with the original tumor diagnosis in 2008 all the way up to the last treatment of chemo just last week. She had several questions about things, but otherwise didn't miss a beat and that was very impressive. She explained to us that in order for she and the team of doctors to make any diagnosis or treatment options he must see several doctors and have several tests run. The appointments are to be made by the scheduler and the plan is for them to be done before Thursday because the team of doctors will meet Thursday night. She indicated that she didn't think there could be any more radiation to the neck, but possibly may need some to the spinal areas in question. Most likely surgery would not be an option either, but she wanted both the radiologist and a surgeon involved. I am very happy that we will be seen by them all and they will offer their opinions to one another and review the scans together before presenting the plan to us. It is so nice to know that there is a team working together. It is even more impressive how every doctor comes in to see us knowing his case and we don't have to repeat ourselves over and over.
She then set us up to see a nutritionist. (Dr. Tsao was concerned he was so "skinny") She reviewed the supplement schedule that mom has been following and agreed it is plenty for him and he should gain weight on that regimen. He was instructed to eat by mouth as he wants to and to try and drink more water.
We then met with a wound care specialist. She looked over dad's neck and told mom she was doing a good job taking care of it. She gave us a few tips and said that the surgeon may have some other tips for us once he saw it.
Next, we were sent for initial bloodwork and then we were done for the day..All of us went straight to a much needed nap!!
Our schedule has not worked well for us so far, but they nice people here are working on that for us. The original schedule has us doing nothing today or Wednesday. They did a little switching around and we had an appointment with the radiologist, Dr. Gunn today at 1:30. He was very nice and like Dr. Tsao knew dad's whole case without notes! He went over the extreme risks of radiating the neck area again because of the jugular vein possibly bleeding out. (we have been told that before) He did say that he had not received the full picture records from UAB and when he did he would be able to give us a more precise opinion. He too went over the spot on the vertebrae and asked dad several questions about pain and examined his neck and spine. In his opinion (before having seen the pictures/scans from UAB) he said there is a SLIGHT chance of more radiation and that if the MRI shows the spinal area to be stable and not causing any problems he might leave it alone for now or until it shows any change. Again, this is all just speculation until the current scans are up and the team has met. He was VERY nice and genuine. Did you know that doctors wear cowboy boots in Texas? :0
We are scheduled to see the ENT surgeon tomorrow sometime. They haven't called us with the appointment yet, we just know that it is Wednesday. His MRI and CT/PET are scheduled for Thursday. That will be a long, hard day so please pray for that! Now for the frustrating part. The original phone call we got from MDA told us to plan on 3-5 days for new patient consultation. Well it turns out that at least in the Head and Neck department it is always 7 days minimum because the doctors are only in the clinic on Monday. Which means that by Thursday afternoon we will have seen all the doctors on the team and had all the tests/scans done that are requested. The team will meet Thursday evening and our appointment for all the results and plan of action is the following Monday at 10 am! This is not sitting well with any of us (especially dad!) because that is a lot of time away from home just waiting and not getting anything done. I have a call in to the patient advocate who has been assigned to us to help try and work something out. Please pray that all of it falls in to place as it should.
I think that is all. Most everyone here is so nice and so helpful. The shuttle gets us to and from the hospital promptly as well as to Kroger and nearby restaurants for dinner. And YES everything is BIG in Texas because our dinners have been more than filling with lots of leftovers to bring back to the room.
So, we will catch our breath tomorrow with only the one ENT appointment and prepare for scan day on Thursday. We know that you are all praying for us and we are so grateful. I'm still praying BIG and I still want to "knock their socks off" with how he comes through this! He is really weak and really tired so pray for endurance and strength as well.
Love to all,
Michelle
Wednesday, April 13, 2011
MD Anderson!!
On a serious note, I wanted to let everyone know that we are going to MD Anderson! Dad, Mom and I will fly to Houston Sunday, April 17. Dad's first appt. is Monday, April 18 at 8:30 am. We were told to plan on 5-7 days. While this is a very scary endeavor, we are excited, ready and willing. We boldly ask to be covered in your prayers!!!!!
I will be posting daily to keep you all informed. Until then....
-pray for safe travels to Houston
-pray for Stephen as he takes on the "mom role" for up to a week!
-pray for the doctors and medical staff that will be involved in Dad's case. We are praying BIG for a plan that gets rid of this cancer!
-pray for Dad's business...it is very hard to keep up the business when you are sick and fighting cancer...even harder when you are in Houston!
-thank God for giving us this opportunity!
Michelle