Saturday, February 28, 2015

Some things just don't make sense...

Actually lots of things don't make sense but the one I am thinking about right now is the fact that there are 2 Wordeman children that have been snuggled on the couch watching TV since 7:21 AM. On a Saturday. Do you know the DAILY struggle John and I have on school days to drag them out of bed? I can't stop thinking " WHA? HOW? WHY?" See, not only cancer is mysterious. #shakinghead

So, back to Thursday. What a day. A very long yet productive day. Thankfully, my brain MRI came back, well, with just a brain. No sign of cancer. My EKG was fine and while my neck is sore from the biopsy, the procedure went very well and I have had much less bruising and swelling than the first time waaaay back in April 2014. Many things to thank God for!

Dr. M... what can I say, I just really like and trust her. I honestly believe that I am in the best place for treatment with her and her team. They are all just fantastic. The funny thing about my trusting and liking Dr. M is more because of her stories of her husband and children that are so similar to mine. Her humor and just a true...for lack of a better word, goodness about her. She did tell us last Thursday, that she is happy how strong I am and that I need to let her do the worrying about me right now. She said that when it is time for me to worry, she will tell me. It might sound silly, but when you are grasping at anything, hearing that is a good thing.

My new clinical trial starts Tuesday. I would like to start out by saying it is... high maintenance. There are many times I need to be in Indy. Some are going to require over night stays. Many day trips. While slightly frustrating and stressful, it just needs to be done. I am not going to say no to something that has the possibility of prolonging my life. Here is the schedule as we know it. Trust me, I could still have this wrong. Melissa and I went over it in detail last week and even a couple of beers didn't make it any better. Since it is a Phase one trial (first stage to be used on humans) the side effects are not quite well known. since different people react differently etc. They do know that there is hair loss (Miss Judy if you are reading this, I need some warmer head gear! xoxo) joint pain, nausea (to be controlled with meds) really, the "usual."
Tuesday: start trial with labs and infusion. Then hours of "watching me" and many blood draws
This will be overnight stay #1 since I need to be back to IU in the morning for more and many blood draws on Wednesday.
Thursday: I am home
Friday: back to IU for a day of blood draws
Saturday: home
Sunday back to Indy for an overnight stay since I have yet another neck biopsy early Monday morning.
Monday: blood draws and biopsy
Day 15- I have no stinking clue without having my calendar in front of me what day this is but yes, back to IU for blood draws.
Day 21: round 2 of infusion
I will say, that all of this rigamaroar only happens on infusion one and four.
Whew... I feel selfish for asking for more prayers... but I am. Prayers for John and the children. Right now we are all a little on edge you might say. lol  Prayers that this trial will not only help me but others. I would hate to go through all of this and not have it benefit further information on maybe finding a cure or a better chemotherapy for other Triple Negative Cancer patients. Please pray for all of our wonderful friends and family that are yet again going to have to step up to the plate and help us again. As I have said before, we would be lost without all of you! Again selfishly, please pray for minimal side effects for me that I will remain "strong" as Dr. M says.

I am a little nervous to actually say that my phone is back in service (Thank you Doodles for my wonderful loaner!) I am sad to say that I have lost all of my texts from so many of you that I have to admit, read and re-read many, many times. So let's start again, shall we? 513-807-3611

Smooches, Kate

Thursday, February 26, 2015

A day in the life... **update

OK, the silence... Here is what I am going to do to update today. Bit by bit in will add what I can during the day. John, Melissa and I are almost to Indy. I have a long day filled with a brain MRI, lab work, a biopsy on the tumor in my neck and an appointment with the lovely Dr. M.
This is all necessary to start another clinical trial- next week.
Mondays CT scans showed progression- details the follow.

Please keep praying.

Smooches, Kate
******************************************
Hello, good old IU doesn't mess around. I have already had my neck biopsy which hurts more now that the lidocaine is wearing off than during the procedure. Also my brain MRI which went well too.
I am waiting on an ECG and then will go meet with Dr. M with my list of many questions.
I have to fast for my lab work, so John and Melissa just went to lunch. John wanted the meatball Hoagy he had last time that was delicious. Clearly, we are spending too much time here to be able to critique the food.

Sunday, February 1, 2015

Late Update #2,304...

I know! I know! This is just getting a bit ridiculous. Again, I was locked out of not only the blog but all of my gmail sites. And really, as frustrating as it has been, I am embarrassed to admit that I am equally mad at myself for not fixing it before this and well, just plain lazy. I have so many posts ready to be tweaked and published- I just need to do it! I need to remember that I started this blog for others to not only to be able to be updated and PRAY for us but also to help others with breast cancer looking up sites in the middle of the night (cough cough) to help them with the same struggles I am experiencing. One of my New Years resolutions was to update and tell my story as I honestly feel more and more compelled to do.

So, Happy February 1st! How in the heck that happened already, I have NO idea.
Back on Jan 14th... John and I went to see Dr. M in Indy. I had had another CT scan on the 12th and we were so happy and surprised that my scans showed all tumors to be stable! When it comes to cancer (and I am sure MANY other diseases... and now that I am thinking about it life in general- hahaha) The whole thing is really just a crap shoot- you tweak, you guess, you pray. Every time I walk into that hospital, I pray "Lord, I TRUST you!" over and over until John and I get to the steps to go up and into Dr. M's "wing. Again, I have absolute faith that I am in the best hands I possibly could be with her and her team. Yes, it is worth the drive.

So now that the scans came back stable and we realize this is the longest I have been on a chemo without progression, I had to do a little bartering with Dr. M as she was concerned about my hands and feet falling off (slight exaggeration) We ended up not lowering the dose (Kate win) and adding in more meds (Dr. M win) and majorly slowing the infusion time (mutual win). Also, with the ultimate win of Dr. M getting to say "I told you so" if my feet and hands "act up" again. which as of 2 days ago, they have started again. My feet have been healing SO well! Now, I couldn't go get a pedi, but they had felt and looked a ton better. The swelling and itching in my hands were much better too. Until 2 days ago. Honestly, this has me really stressed out. The swelling and redness and burned feeling is progressively getting worse. I really thought I was out of the woods as for most people, this reaction to the chemo's toxicity is within a few days after infusion. NOT weeks later. UGH.
*John on the other hand- not surprised at all and is happy to tell me so. :)
Please pray that this doesn't spiral out of control. I honestly don't know what I will do.

Ok, off to Mass but I promise to update this afternoon... or tomorrow.

Smooches, Kate