Round Five

Dear Friends,

It has been a rough month in many ways but the chemo has not been too bad. I am on my last weekend of round 5 and doing ok. Feet sore, mouth sore, GI stuff... but I know the drill now and am coping ok. We have had other concerns as a family but I know that GOD is in control and HE is my rock and my fortress. The storms of life do not stop for cancer treatment you know!

Ethan is doing fine in his first post bone graft cast - one more week to go and he will get it changed (4 weeks the first time, 8 weeks the second time!) And would you believe it, Kristina broke her arm last week!!!!!!! ARGHHHHH!!!!!! She was racing her brother and sister on the sidewalk in the DARK and tripped and fell. It's a "buckle fracture" which will heal up in about 4 weeks we are told. At least she was eligible for a waterproof cast which helps - Ethan's couldn't be waterproof due to his relatively recent stitches so we have to do the "tape the plastic bag all over it" routine each day for his bath (no showers for him for now).

One of our dear friends who has been battling a brain tumor for many years has come home on hospice care now. It's sad for all of us. The other friend I asked prayer for has done well with his surgery and is going to start chemo soon. Please pray for him too.

Thank you all for your faithfulness in prayer. God isn't finished teaching me lessons on this journey.

Love,
Karen

(Lab work next week, then CAT scan 6 weeks later)

HALF DONE!

Had my checkup at PENN this week and my oncologist was in a good mood. :-P I told him last time he was grouchy and it did nothing for my attitude. Teehee. He is usually very pleasant, really! Anyway he pointed out that I am half done chemo! HOORAH! I had wondered, as I learned recently that many folks take this poison for years. OH MY. But as I suspected, these are folks who have some small tumors that are not surgically removable, and the Sutent can keep them the same size or shrink them / hold them at bay for long periods of time (this is a good thing!). Thankfully I have no visible tumors so there is no reason for me to continue the Sutent after "only" four more rounds. Yippee! There is still the nagging reality that this cancer can come back and hit me anytime for years to come, but I am trying to dwell on the fact that the longer it stays gone the better chance it will stay gone or that better treatments will be discovered for me if it does come back. Guess this is how optimists think, huh? :-O

I sort of have the hang of the side effects now and ways to handle them or make them more tolerable, know when I have had enough and gotta crash in bed early (not that I listen to myself much) and generally I am handling it ok, so they cut out my next 6 week visit and I can just get the bloodwork done locally and talk to them by phone. Then I will get another CT scan in 12 weeks and go for a visit for those results. And by then I will only have TWO rounds left!???!!!! COOL!

My white count is running a bit low again, my blood pressure is all over the place (mostly low) after messing w/ my BP med a lot because the chemo shoots it up, my feet and hands and mouth still do weird stuff..... but generally I think I can make it through. Thank you all for holding me up in prayer. God is sustaining me through the rough spots. I am really hoping I can keep a good attitude and "look on the bright side" more often, cancel the pity parties and hope for the future. That worry thing is really a drag.

We have a friend just diagnosed with colon cancer and my heart is going out to he and his wife, as well as another friend whose almost 20 years ago brain tumor returned and now has spread to bone in his hip and spine. Please add them to your prayers.

Ethan is doing well post-op after about 36 hours of stupor from the anesthesia and a good bit of pain, but he is a great sport about it all and is doing much better now. He has 3 pins in his wrist and a big splint, which will then be 8 weeks of casts and another splint but we hope he is good as new by summer! Charles continues PT and is almost free of back pain now but has a lot of nerve weakness in his R leg still being worked on. The legal mess continues but our lawyer is working on some things to move it ahead a little faster than a snails pace, which I guess is some sort of improvement? Meanwhile we know God is with us and He is providing enough to manage day by day, for which we are so thankful.

Thank you so much for standing by us in the storm,
Karen

ALL CLEAR!

What a relief! I had to call my family doctor because I have had a rash / hives since the CT scan on Wednesday. The oncology nurse practitioner felt it was unlikely related to the CT scan dye but I wasn't so sure and I still have the rash today so I called my family doctor. She waited to hear the story of the rash and then said by the way I know I am not supposed to tell you this until you see oncology next Thursday but your CT scan was all clear again! She read me parts of the report to make sure I really believed her. :-)

Praise God. I was so nervous about this scan this time! I am so thankful not to have to wait till next week for the results.

I do have to be careful now about a possible allergy to the CT scan dye but we will deal with that in 3 months when I get my next scan.

Thank you all for praying me along this winding road.

Karen

Done Round Four

Thank you for STILL reading my blog, and more importantly, for PRAYING for me! I took 2 days off before Christmas to "lighten up" this round of chemo as my feet were hurting pretty badly in the first 11 days or so. That helped a LOT. Still by yesterday when I finished this round I was dragging, mouth weird, hands and feet hurting a little - but not too bad. My body has definitely adjusted to it somewhat and it is tolerable although not a breeze. Worth it if it saves my life, that's for sure. I read recently that some people stay on this med for years! RATS. I was really counting on stopping after 12 months..... I guess we will cross that bridge when we get there. :-(

Had my labs today, and will have my every 3 month CT scan on Wednesday. I admit I have been dreading this one too much, really struggling with fear that something will be found on the CT this time. I will not have the results until January 17th when I see my oncologist at Penn. Please pray that I can turn this worrying around in the future. I don't want to live with this black cloud hanging over me for the rest of my life. It will still always be there. I have to learn to ignore it, or live with it, or look at it's silver lining... or somethin' !!! Otherwise I am going to drive my poor husband bonkers with my worrying! My daughter gave me a great book on living in cancer's shadow and it has already started to change my outlook a bit. I do think it's understandable that occasionally I feel "down" but I can't let it consume me. Pray I don't have these "slumps" too often. Thank you so much!

Ethan's wrist surgery is on January 15th. Please pray they can use a bone graft from his radius (arm) and will not have to use his hip bone, and for a successful surgery, fast healing, little pain. Ethan has been great through the CT scan, MRI, 2nd opinion MD and 3 visits with the surgeon stuff. He took all the surgical news well, even studied the surgical photos I printed off about the procedure and kept comforting ME about it all! He didn't react negatively to ANYTHING about this until they told him he wouldn't be able to eat or drink after midnight the night before surgery! HAHA! That's a 14 yr old boy for ya! :-)

Our Christmas was really nice, in spite of our current "troubles". So many people reached out to us! We even had "secret santas" from another state who we didn't even know, send gifts to us all!!!!!! We were overwhelmed! In addition some Kohl's and Target and Visa gift cards showed up - some anonymously... and many cards and notes of encouragement kept our hopes up and allowed us to enjoy the season. It was hard for me at times as that dumb worry monster kept creeping in, but most hours of most days my mind was on my family and caring for them, which is right were I love to be. :-)

We are back to homeschool now after the Christmas break, still catching up on all the business bookkeeping and so on too. As Evan said today, "It's never a dull moment here is it Mommy?" Thank you all so much for sticking by us for the long haul. Please keep praying for the insurance case - it DRAGS on.... I am too tired of that to even write about it.....

Love,
Karen

Midway again..

Just a quick update in the midst of the Christmas rush! I am almost 1/2 way through the fourth cycle of Sutent. Midway of the last round my feet were starting to get sore and then suddenly improved. This time they are getting worse yesterday and today. I am having a hard time walking and it is painful even when I am not walking. Please pray that this side effect would not last too long this cycle! I still have a LOT of finishing up to do before Christmas and it's a bit discouraging to be doing everything with such sore feet! I have been burning the candle at both ends and not getting enough sleep which is catching up to me and I was completely exhausted by bedtime last night. So, please pray I will be able to prioritize all the things that need to be done and get enough rest. I have had some waves of fear "what if this is my last Christmas with my family?" which I need to overcome. Thank you so much for praying for me in my weakness. I want to face each day with JOY. If God gives me 30 more years on earth, I don't want to regret having sulked around now for no reason!!! :-)

We spoke to our attorney this week and our insurance company has replied to his letter. They said NOTHING. Just sent back a copy of the exact same low offer that they had given at least 2 months ago. Basically they are stonewalling us, and not only that, with ATTITUDE! ARGH! And as for our appeal on the trucking case, the judge has acknowledged our filing the appeal, but now has some number of weeks (months?) to reply with her reasons for denying our request to overturn the unfair settlement. So, we are in limbo on both aspects of the truck accident. We are so TIRED of this. And I am anxious about how we will make it through the lean winter months of our business year... All we have is the LORD. I suppose that is what He wants us to learn.

Charles' back injury is improving via physical therapy and for that we are both very grateful. He is still uncomfortable and his leg has a lot of numbness and weakness. But the pain is much decreased, so that is a relief. He is able to do more to help around the house and concentrate better at work, thankfully. Please pray that the ibuprofen does not give him a lot of GI trouble as has happened in the past when he took it for his various arm injuries over the years.

Ethan is a trooper! He has been to the hand specialist twice, had a CT scan and now an MRI to evaluate his wrist fracture. We will be taking him for a second opinion at the Phila Hand Center on Jan 3rd. (wow are we thankful for our medical insurance!) Then, more than likely he will have a very extensive 2-3 hour surgery to repair his wrist in mid January. There is some concern about ligament damage, and the small, soft bone graft may not be enough so they might have to take a small portion of bone from his hip instead :-( We will know more after the MRI results come back. He will be in a splint then a cast for a total of at least 6-8 weeks post-op. He has a great attitude even though he has to drop out of archery, can't be on the volleyball team this winter, etc. I bet he thinks he won't have to do his schoolwork but he is wrong on that one! :-)

We have been blessed by so much tender loving CARE these last few weeks from so many people. THANK YOU all for carrying us through each step of this journey. I cannot IMAGINE doing this ALONE! God is our ever present helpin time of trouble, but HE has sent so many people to be His hands and feet - and that tangible care is what gets us through each day.

MERRY CHRISTMAS! May you all know the JOY and PEACE that comes only from God, through His precious son, born in that manger to die for our sins.

Love,
Karen