The latest (and not the greatest) news...
Hi gang,
Old Bitty Agnes, here. (That is how I am going to refer to myself from now on while I run around without teeth). I just want to bring you lovely people up to speed.
So the good news is that I am feeling much, much better! The pain has significantly decreased and is under control and the swelling has gone down SO much. I actually look like a person now and not a halloween mask! Phew. What a relief.
The not so good news is that they didn't get everything and I need to have the surgery again:/ The biopsy of the bone that was removed is showing that the tumor is bigger than expected and more needs to come out. I knew this was a possibility but we were all under the impression that it was a slim, tiny chance this would happen. But it is happening. Several people have asked for my surgeon's address so they can hunt him down, but it really was not something that he could have foreseen or done differently. With most cases they can remove a tumor and then put it under a microscope right there in the OR to determine if they have removed everything. They can't do that with a bone tumor. They actually have to freeze it and then do a biopsy, so the surgeon has to use his or her best judgement based on a teeny tiny sliver of the original biopsy to determine how big and in what shape the tumor is growing. This crazy jerk in my face is atypical in EVERY way so the surgeon did what he could, felt confident that he left healthy margins on either side and then found out that what he was taking out was, on a microscopic level, larger than what they all originally thought. So given these findings, chemo is also back on the table and there is more of a chance that I will need that than I had hoped. But if it is necessary to increase the chance of kicking this thing, then bring it on. I will do whatever I need to do. I will find out late next week what the revised treatment plan is. if I DO need chemo, it will start within the next few weeks, go for about 3 months and then the surgery will be in the Spring. If i DO NOT need chemo, surgery will take place in mid-January, giving me time to recoup and heal from this first round.
So it's not the situation we had hoped for, but it could definitely be worse. Yes, the week after surgery was pretty much the week from hell but it was just one week. So going through this surgery again is mind boggling (mostly because I cannot fathom them taking more out...it is already so, so much), but I can get through another week. And we will be more prepared this time on so many levels. I can't say that it will be easier, but we will know what to expect.
On the bright side, I can finally talk without being in pain. I am sleeping through the night. The wound on my leg where they took the skin for the graft is finally starting to heal. I am learning to drink water without it coming out my nose (HUGE learning curve on that one, folks). I had a playdate with the most precious 6 month old you can imagine yesterday AND I have more teeth than she does so I win. I am totally caught up on Homeland. I have THE MOST AMAZING support system anyone could ever hope for and I am eternally grateful for all of you. You will never know how grateful I am.
Much love,
Kate
Comments (12)
Just so ya know, chemo is not fun per se, but totally do-able. If that is the way you and your dr. decide to go, I am sending you a big weird care package. Love you! Keep on keepin' on my friend! If there is anything you need, even just an ear, I am here. And I can be there pretty quick! Love!
kaytie... you are amazing... so upbeat and funny... you have always made me smile... I pray each day that you lick this cancer however it need be... I am in your corner and can't wait to see you... xoxox
Your humor in the midst of all of this is unbelievable, it just makes us love you more! And learning how to drink water without it coming out your nose will look really good when you update your resume. Love you Miss Kaytie and praying for the best possible outcome.
I just died laughing out loud reading your post. You have such an amazing positive attitude (that you've always had) and it is the perfect medicine. I'm so glad you are feeling better. Our thoughts, prayers, and hearts are with you as you go through this. We love you!
Dear Old Bitty Agnes, Thanks for the update! Your upbeat spirit is inspiring and appreciated for those of us who are thinking of you and feeling a bit helpless. I was especially tickled when you wrote about having more teeth than a 6 month old...yes, you do WIN!! Really, really happy you are feeling better and in much less pain, baby steps (I get it!) So one thing at a time, my hope and prayer is that you will NOT NEED chemo!! Know that I continue to think of you every day and send lots of love and positive energy your way. Love you much, Heidi p.s. I'm also happy that Nurse Nancy Pants has requested you include a snail mail address in this last post! XOXOX
Love you to pieces, my very strong friend. Thinking of you always, always. Strength, love, light
Kaytie, you are such an inspiration. I know with your strength and humor you will beat this thing.
I LUV U!!!!! And if I could ship myself to ur bedside i would. Ur a fighter and we r all here to hold u up in any way we can. Xoxoxo
Kaytie, you are definitely one of a kind, sweet, smart, and hysterical! So glad your pain is under better control and that you are able to do some fun things! You have been, and will continue to stay, in my thoughts and prayers! Love to you and your amazing family! Emily Bernier 🌞
Oh Kaytie... Your precious spirit shines through even in this yucky turn of events. Wishing you the best, hoping you allow yourself some not-so-bright times too and praying that you can feel all the love, warmth, light and prayers that surround you from all of us that love you. Kisses and hugs and joy to you sweet Kaytie!
Sending you tons of love and hugs and deep prayers that you continue to ride this wave with the deepest peace and steadiness. Love, as you so well know, is EVERYTHING. Nothing trumps it ever, and there is so much of it all around you! May this love show up everywhere, in all the practical and not-so-practical ways that serve you best.
Hi Kaytie! Nicole has been keeping Lou and I updated on how you are doing. You are in our thoughts and prayers and am hoping for the quickest recovery for you. You have an amazing spirit and strength which will help you get through this! We are all pulling for you! Lots of hugs to you Kaytie! Sandy and Lou Lombardo