Very Late Update

Yes, I should be ashamed for taking so long to update this site.  I am.  I'm afraid life gets in the way--but isn't that a good thing?  There was a time when I wasn't sure I'd have a life, so being busy and preoccupied is a great!

Let me say that I'm very, very happy to be able to update this blog and say that as of today, 2/15/2013, I can still say NED.  (No evidence of disease.)  That is a fantastic thing to say.  My life has been pretty ordinary.  Another good thing.  Especially since many people who receive this life saving surgery have major quality of life issues. I think we'd all argue (at least for a while) that having life is better than not.  Then, maybe we get to the point where decisions have to be made.  I am of the opinion that decisions are better than not being here... So I hope for many more years of NED and a good quality of life.

Since I lasted posted, which was in 2010, I've had three hernia repairs and a Desmoid tumor removal.  Again, I was lucky that these surgeries did not affect greatly my quality of life.  I am currently recovering from hernia repair # 3.  It will be a few weeks before we know if it's taken or not.  I hope so, because surgery, even minor abdominal surgery is hard and it is hard on my family too.  They have to be there to help nurse me back to health and wait on me hand and foot. And I will be forever grateful to them.  My sweet husband is out getting groceries now, because I'm not quite up to it.

I promise to be more active on the site.  I've been active in the Belly Buttons support group these last four years and I believe that this group is a very important resource for people diagnosed with abdominal cancers.

That's all for today.

Two Years

I've been slow in putting up the good news.  Another good report from Dr. Sardi.  I won't need to be scanned again until March.  I wish I could say it gets easier each time--but it doesn't.  I'll just keep plugging and hoping for the best.
I will need surgery to repair surgical hernia and scar tissue--but that is pending.  Believe me, I don't want more surgery.  But I don't want a problem and emergency surgery either.  So more on that later.
I'll try to update more thoroughly later.

One Year Anniversary

Today is one year since my surgery. I'm trying to remember... but I can't remember much. Maybe it's supposed to be that way.

I'm happy to be feeling pretty normal. As I said in my last post, I'm waiting for the next scan. Does that ever change after you are diagnosed with cancer?

So one year out, here's a big thank you to everyone who supported me and did so much for me over the last year. I know I wouldn't have made it without you. Especially Mike who did more for me then I could ever have expected. You took your wedding vows seriously! Hopefully, you don't remember everything you had to do for me. I won't go into detail here. You know. You are the best.

Carrie and Keith you had to take care of both of us. Carrie, when you first came in the ICU and I could hear you crying and couldn't move or communicate, that was the worst part of the whole thing. And Keith, you had to bail my car out and drive all over creation! Thanks for letting us use your house too. You both went above and beyond the call of duty... Carrie, do we have plans for our annual shopping trip in February?

Justin and Unkyong, you might be 3,000 miles away, but your support was awesome. Jus, when my first surgeon didn't know what was going on, you figured it out. Before the lab results! If you hadn't found Dr. Sardi... I don't know...

Our neighbors and my co-workers were very supportive with food and friendship. It really means a lot.

And what a year. Mike and I went on the trip of a life time this summer. We drove cross-country to visit Justin and UnKyong in California. I've always wanted to do that. I think the trip made me stronger. I sure felt great the entire time. And I'd do it again in a heartbeat.

I'm posting a picture of Mike and me in San Francisco in a cable car.

I'll be back with more updates. Until then, take care and enjoy life.

Good News

Met with Dr. Sardi this week for 2nd six-month check-up and got good report. Wait another six months. Still paranoid about every ache and pain, but overall, feeling good and getting a good appetite. Hands are almost completely normal! Yeah!

IRON GIRL

Well, it's been a while since I looked in on the blog! Everything is going well. We had a wonderful summer driving cross-country and visiting son and daughter-in-law in San Francisco. It was so much fun I want to do it again. I'm tempted to start a blog to talk about my vacation! Now we are back to reality--and I'm getting ready to head back to the classroom.

I've had good relief for my hands with a monthly B-12 injection and an oral medication called neurotin (generic gabapentin). Just minor numbness and tingling and almost totally normal as far as strength and mobility goes. In a few weeks I go in for my 2nd CT scan and tumor markers. Can't say I'm looking forward to it, but I guess I'll feel better once it's done. So, I'll post results when I get them. I see Dr. Sardi again in September.

The main purpose of today's update is to announce that my daughter, Carrie Price, is running in her second sprint triathlon on August 23. She has decided to donate any funds she raises to Dr. Sardi's research. I'm including a link for anyone interested in donating.

http://www.facebook.com/home.php#/note.php?note_id=113611146966&id=545929840&ref=nf

More info will follow on the IRON GIRL.

Good heath to all!

Good Hand Results and Cancer Survivor Celebration

I'm happy to report that my hands are sooooo much better. The B12 injections and gabapentin medication seem to be doing the trick. I still have super-sensitivity--I suppose what doctors would call neuropathy, but it's much better than it was. I have more hand strength, less pain, and my writing is almost back to normal. It's wonderful!

I'm also happy to report that Mike, Carrie, Keith, and I attended, on June 7, Dr. Armando Sardi's Cancer Survivor Celebration. It was held at the Inner Harbor. We had a bird's eye view of the harbor and a delightful luncheon. The event was emotional for all of us. We got to meet several other survivors--at our table, one coming all the way from Chicago, one from good 'ole Taneytown, MD, and one from Harford County (his wife had just had the surgery that Tuesday and he came solo!).

The Chicago survivor holds the record for longest HIPEC surgery (18 1/2 hours). It made me feel like 9 1/2 hours was nothing! Sharing stories and experiences was interesting and draining. For some reason it makes you feel better to know that others have been through the same thing. At the end of the event though, I was ready to go home.

There was one 15-year survivor and several who are beyond five years. Dr. Sardi,in his usual upbeat fashion, made everyone feel comfortable and healthy. Somehow he manages to impart optimism wherever he goes. He spoke about on-going research. There are changes and adjustments to the surgery on an on-going basis. The newest trend is to do a biopsy of the tumor and determine which type of chemo is most effective. Current procedure is to use mytomycin c, which apparently doesn't work on all tumors.

I am going to post a picture taken by Carrie of the survivor group that attended. There was a lot going on and everyone looks confused.... including me!

On another topic, I made it through the rest of the school year. When I went back to work in February I was NOT ready! At least I didn't think I was. Other than being very tired (I do get tired easily) everything went well. We finished up on June 4. It went by really quickly and I'm actually missing it!

Since school's been out Mike and I have been trying to get our exercise in. We've walked almost every morning and I'm increasing my speed and distance. I am actually doing better on hills than I have in years... so that makes me wonder if my breathlessness from years ago could have been related to this.

So, all good. I hope it stays that way.

Here's to a wonderful summer--whether you have to work or can enjoy a little vacation!

On The Right Track

I'm happy to report that the B-12 deficiency that I talked about in the last post might be the answer to my hand problem. The latest news is a trip to visit a neurologist. I really like him and have had instant relief--though I still have problems. Dr. Mir says it would take up to six months to completely recover.

Bottom-line: Dr. Mir believes the hand problem is related to positioning during the long PMP surgery. He said that open-heart patients have hand problems like this because of rib retraction and the way the retraction puts pressure on collar bones and the nerves that run to the hands. Then, in my case, the additional B-12 deficiency which is probably related to removal of ileum (the part of the small intestine that absorbs B-12--Carrie discovered this!) exacerbates the problem. He also mentioned that stress will make it even worse! (And I haven't been stressed at all!)

After a nerve conductivity test which indicated that my right hand might have a little carpel tunnel, Dr. Mir prescribed B-12 injections and Nerontin or Gabapentin, which is used to treat neuropathic pain. The amazing thing is I had some relief almost instantly. Hands are so much better. Mike said I'm a different person. And I thought I was pretty awesome already!

Only thing that worries me about this treatment is that Gabapentin causes weight gain--just what I don't need!