Monday, July 13, 2009

Post-Operation Update Miracles & Surgery for Tolan

Today it has been 2 months exactly since my first life-changing surgery. I had an appointment with Dr. Couldwell, a follow-up to check on my progress. My father-in-law, Larry, drove me there and my sister, Kristi, came along to visit. Tolan met us there, too. The visiting time with my loved ones has been such a nice, unexpected blessing!

When Tolan and I met with Dr. Couldwell, we were both pleased to hear that he feels like I am progressing as well as can be expected. Many of my restrictions have been lifted, and as my strength (and sight) allows, I can start trying to be more normal (ie, picking up my kids and other objects over 10 pounds, getting weaned off some of the strong drugs with yucky side effects, etc). I will still get worn out and need rests, but I am allowed to purposely push myself a "little" more now. Again, my challenge is always to learn how to push without overdoing it (I have never been good at finding that balance, I usually overdo it!).

Dr. Couldwell also felt confident that my paralysis is temporary and reassured us that during the surgery they tested the nerves and they were in good working order (how you do that, I don't know). Though he couldn't put a time frame on it, he really believes I will be recovered from all the face/paralysis/skin/eye problems within a year or less! What wonderful news! My next appointment with him will be in 6 months, at which time another MRI will be done to exam the remains of the tumor. He said he believes the tumor may not re-grow because the pathology report on it showed that the tumor itself was nearly all removed. Though there are still some pieces of it on the brainstem, they do not believe these sections will be able to reproduce without the main "mass" of the tumor present. WOW! Best case scenario and truly one of the miracles we have been looking for.

So, despite originally being told I had an inoperable brain tumor in a very bad location, there is a good chance I will make a full recovery and still be able to live a long, healthy life without further brain tumor issues!! Miracles, miracles!

Though most of you have seen the photos of me in the days following my original surgery, I was quite shocked to see all of them when I got home. I was in tears when I saw how really sick I looked. (See the reminder photo below...rated PG and not nearly as disturbing as many of the photos we have on our computer.) I wondered how hard it must have been for my husband, parents, children, friends and loved ones to see me looking so frail and sick. I realize now it is much better that I didn't get to see the real "picture" of myself at the time...

In comparison to that, my life now is a piece of cake, with just a few crumbs missing. :)

So, the other piece of news is that Tolan is having surgery on Thursday, for a torn meniscus in his right knee. The truth is, he was in the process of doing all of this before I was diagnosed, but his plans were all put on hold when our lives suddenly turned upside down in April. His surgery has been rescheduled 4 times, each time thinking I would "be better" by the time the new date arrived. Well, I am still not all the way better, but he needs to have this done so he can start to get better, too.

Tolan will have surgery on Thursday at a specialty IHC facility in Salt Lake. My mom will stay with us through the weekend (she normally goes to her home to Orem on the weekends to recover a little) and Tolan will stay at his parents' house in Roy so Kay and Larry can take care of him. It is hard for us to feel like we are still a burden on our families and friends, but we truly appreciate all the help and support. Tolan is supposed to be "down" for 3-4 days, then can start to put pressure on his leg as he feels comfortable.

Please pray with us that he will NOT experience any complications (we are more skeptical these days!) and he will heal quickly and easily!

Thanks so much for all the continued support! We love you all and are still amazed by each of you!


Pam said...

Jodi, I have had one surgery in my life--torn miniscus! It was a breeze and I recovered quickly. I didn't even need pain meds. I was 49 at the time. I think Tolan is much younger. More good news for you.

Anonymous said...

If there is one word you cannot use to describe your life it would be boring. I don't know about you, but sometimes I wish for boring, uneventful, or even slow. Life seems to get more hectic,faster paced, more obligations, more challenges, more and more and more and seem to accomplish less and less. How can we choose more efficiently? Choose less and accomplish more? I think it is possible. Clean out, slim down and organize. Life that is. Remember to enjoy those little things that get lost is our day. Who and what are important.

Els Manning said...

as we struggle i keep thinking that God only gives us what we can handle. Makes me feel a lot better about the problems in my life...ha!
Good luck with the surgery...and do let me know if you need something.

Aaron F. said...

I'm thrilled that you're doing so well. I love you and your family very much. I want to thank them for everything that they do to help. You are all so wonderful. To be completely honest, you are the best people I have ever known (especially you, Jodi!)

I will continue to pray for you. You are so beautiful... both inside and outside. Please don't worry about repaying the kindness of others... I assure you that they are lucky to have you in their lives..... being able to spend more time with a wonderful person like you is plenty of a reward.

I'm sure that you have lots of tricks to help reduce the pain... but I can't resist the urge =) - try laying down one your back with an icepack on your pillow at the base of your skull. [Also, there is an electro-stimulation machine called a "TENS unit" that might also help a little bit.]

Again, I'm praying for you. Don't rush your recovery *too* much. The extra sleep and "me time" is very very good for your long term recovery! =)

I have nothing... but if you can think of anything I can do for you, please let me know... and I would love to try to help. Even if it's money that you need.. please let me know. God works in mysterious ways.


Thank you for being so great!! =)

Belinda said...

Kymi had a knee surgery, when she was 5 - it wasn't torn - but she had too much miniscus tissue - she was amazing - and I pray that all goes well for Tolan too!!!
Miracles - we see them everyday!! I Thank God for them all!
Love Ya x

Carol Liptrot said...

Hey Jodi, Great report from the doctor! And another answer to our prayers. You have been blest with so many miracles. It has been a blessing to me to watch as they have taken place. I would also have to agree with you,that as long as I have known you, you have always pushed yourself a little too much, but that is who you are and what you are about! I'm sure you will quickly learn moderation and all will go well. Our prayers will continue to be with you and with Tolan and the rest of your family too. I'm sure he will recover quickly. Keep up the great work. Love, Carol

Jason said...

Hey Jodi :)

I've spent all day reading over your posts, because of the note that you left me on my blog, and I have to tell you, you have given me a much needed boost. I've been struggling more than I'd like to admit with my 'attitude' the last few weeks. I've had a hard time finding the strength to push forward at times. Not that I don't appreciate life, because I genuinely do, it's more that I feel exhausted.

Anyway,thank you for allowing me to share your experience with you. We all need a pick-me-up at different times during our lives, and you have given me mine :)
I'll look forward to following your journey.
Much love to you :)

Teresa said...

Wow Jodi - I can't believe all that has happened these past two months. I think your positive outlook is amazing. I religiously check your blog and am so happy to see how great you look and that you continue making progress. I can't believe Tolan has to have surgery now. Quite the timing.

Anonymous said...

Jodi - We need to finish our conversation. I started to say that I had the surgery on Wednesday, April 28 and was back to work in a few days. I got up on it really quite fast because with that type of surgery, they tell you it is pressure as tolerated. I have a new pair of crutches if you want them. They will send Tolan home with them, but I really didn't use them. It is cumbersome because of a huge bandage for three small incisions. The worst part for me was the thigh pain where the scope actually went in, but the incision is still small. I didn't use pain meds either other than Tylenol and Advil. My knee feels a lot better.

Bless Dr. Couldwell. I'm so happy for his positive comments about all of your recovery - nerve and brain. Your pics were a little disturbing because it is always hard to see someone you love go through so much, but also tells the story. You are a living miracle! I'll talk to you soon. Love, Noellee