One of Life's Little Twists

Hi, this is Karin’s husband David. I’ve been thinking about making this post for a while now, I still don’t know how it’s going to go. Karin developed pneumonia in September shortly after she had a port installed in her chest. She was able to recover from it the first time, but then developed it again in mid October and again at the end of October. It was just too much for her already weakened immune system, and she passed away on Halloween.

It’s been more than two months now, and I keep expecting that things will get better. Really that’s a lie, what I keep expecting is to wake up and find her next to me. That hasn’t happened yet though… What has happened? Well I’ve tried to do the things that Karin told me she wanted to happen, and in the things that we didn’t talk about, I’ve tried to do what I thought she might want me too. None of it is easy of course, Karin was my rock and idea person. She pointed the course, and helped row. When that wasn’t enough, I just tried to blow enough hot air to make the sails get us there…

Karin and I originally met in junior high school. She was a very popular and beautiful cheerleader and drill team member, and I was me… So of course me being me I never took the chance to get to know Karin, and that may be the biggest regret of my life. If I had taken that chance, maybe we could have clicked then and had almost 30 years with each other. Okay, so I would have at least have know her better and been a friend for that long, but you never know we just might have clicked.

Instead we met again in 2004, on match.com, and our first date was on July 24th, 2004. We were married a year later on July 31st, 2005. Immediately from the first or second date we began falling in love, and that love grew for the last 6 and a half years. I honestly believe that we are soul mates, and if there is any justice in this universe at all we will be together again.

Before Karin and I started dating, I used to write some at my own blog. Karin loved reading the stories that I wrote, but I stopped writing shortly after we met. She used to ask me once in a while why I never wrote any more, and I’m not sure if I ever really told her a reason. Before I met Karin, I lived a lot in my head, and every little thing that happened I would try to turn into some interesting tale. Sometimes I was able to and it would go into my blog, other times they didn’t make it past the draft… Once I met Karin though, I didn’t need to live in my head. She made every day fun, and worth being there for.  So why didn’t I write about that? Maybe out of selfishness, or a little fear. I didn’t want to share our times with everyone else, I had found my princess and was living my dream, and maybe I was also a little afraid that anything I wrote would never get it right, and might dull what it was actually like.

I really wish I had kept writing about it, not so much for me, but because I think Karin really would have enjoyed reading it. I could have put down in words everything that she and I experienced, and how she made me feel. I think that is something that I could have given her. So I’m going to try to get back to writing a little. I don’t know what it will be, I think to start it will mostly be me remembering things that Karin and I had together, maybe it will help me. I don’t know how long I will keep it up, or if it will be anything for anyone but me. I haven’t decided yet if I will post on Karin’s blog or just update mine.

I’m going to end this post with what I wrote on Karin’s facebook the night that she passed away. Thank you to everyone who was a part of Karin’s life on here. It really made things much easier for her during those long days when she was at home wondering what the next days and months would bring…

My world has changed

Thank you to everyone who was there for Karin and who did so much to make her feel so loved. When Karin was first diagnosed with lung cancer we set up a blog for her as a way to get her feelings out there as she was going through this. She met some really good people through it, people who she connected with and immediately made her feel welcome in their worlds.

A little while later I set up a Facebook account for her, and immediately she started finding friends from her past. People she was close to in school, that she could reconnect with, and people that she hadn’t met before who came across her story.

It’s still surprising to me just how much it surprised her that she had so many friends and people that cared about her. Me, being one of the people in school with her, from my point of view anyway always saw her as one of the most popular people in school. That’s really too bad for me too, because it kept me from ever trying to get to know her then. It took me more that 25 years to find out just how amazing she was.

Karin passed away this evening. She was with family and friends and she was not alone, I would wish that for anyone at the end. It’s the only thing that we can carry with us. She kicked the cancer’s ass all over the place, jut like she said she would. The fight took so much out of her though, and when she got pneumonia it was just too hard for her to keep coming back and fighting. To anyone who may have doubts though I can tell you even though it was too much for her body at the end, her spirt was there all the way and will be with me forever.

My world is so much darker tonight, but the heavens will be much brighter now… They have my angel.

All my Love, all my Life... Sideways 8

I had a wonderful visit this morning with my Oncologist!

He is the most wonderful, thorough, personable doctor I have.

Today, he filled my calendar with appointments of hope and promise and answers! I will be getting a CAT scan on everything neck down during the coming week. He drew spinal fluid for testing from my chemo port (and it didn’t hurt one bit – he’s so gentle). My vitals were all very good. They did blood work that resulted in good numbers. I will see him again on the eleventh for CAT scan and spinal fluid results. My lung still sounds clear so that’s another happy fact! Best news from him though, my chemo will be once or twice a week after the Gamma Knife decision and done as easily and quick as he drew the spinal fluid today. So we’re on our way!

To top it all off, KMC (my hospital of choice) called me and finally scheduled the rehabilitation for my lymphodema in my face and scheduled many appointments for me. I still have to call them back on the leg rehabilitation because they called me while I was at the doctor’s office so even that is another good thing to look forward to….relief!

Things are finally moving along and that is such a mood boost I couldn’t be happier.

I’m having a wonderful day and I sure hope you are too!

I’m very nervous about this next step down on Decadron tomorrow. If I remember correctly, this was when the possibility of headaches came back, but these days it’s hard to remember a conversation I’m having. It does make me nervous though. The headaches are excruciating to say the least. Guess we’ll see.

Good thing is, I get to begin my day with an Oncologist’s appointment tomorrow so hopefully he will ease my nervousness. I’m looking forward to seeing him again because he is by far my favorite doctor of all! He answers all my questions thoroughly and makes things easy for me to understand. He really sets my mind at ease.

I’m just so ready for the next step in my treatment. I want answers and not more questions. I want to know what’s on my schedule instead of wondering “what’s next”. I want to stand up without falling back into my chair because I have no strength in my legs and my arms are getting weaker from all the struggling to do so. I want to walk down the hall on my own instead of on my walker and leave my house without a wheel chair with me driving. Sounds greedy I know – but really I’m not. I just want some quality of life again. I’ve worked so very hard to have patience, and believe me, I have patience, but at some point you just want someone to say let’s do this and get it done! This is MY life, I want to live it to the fullest and enjoy it with those around me who are giving me such love and support.

Many prayers, love and support to anyone who needs it. I love my readers very much. I know they are few but that’s okay. I never intended this to become something big. Just a place to put down my feelings, brag about my children if I want, chronicle my illness, etc. Thank you readers, I do appreciate you very much.

Karin

Well, the doctor has finally started me on a step down of the dreaded Decadron steroid. My swelling and mobility is getting much better and during this 3 week period of weening off the meds things should get better day by day. Standing up is still quite a difficulty but once I’m up I can get around with just my walker a lot better than I could last weekend! It’s a small…very small step but is something to look forward to improving every day. Maybe I can actually get up to the deck and in to the pool a second time this summer. Swimming is supposed to be such good therapy for my legs since it’s taking so much strain off of my muscles while I walk around the pool. Lung cancer followed by two different rounds of brain mets (this one inoperable to begin with) is such a strain on ALL of my body I need some sort of respite and that’s what I need. Especially since it’s been hotter than an oven here this summer.

We are still anxiously awaiting the MRI and results so we know where we go from here and that date cannot come soon enough, but it is something to look forward to and that’s a good thing!

We will keep looking forward though! Tomorrow we get to celebrate our fifth wedding anniversary and that’s yet another thing to look forward to and be thankful for.

7/31/05

GREAT NEWS!

Finally I have an MRI scheduled on August 18th to find out how well the radiation worked. I’ll have those answers on August 20th. Then we’ll know if I qualify for another Gamma Knife surgery. After that (IF I qualify) I will start chemo. Otherwise I will just go into chemo right away. Either way, things are moving along and the waiting to know game will be partially over.

That is such a relief and a boost to my positive attitude! I so much prefer knowing when something is going to happen than wondering all the time!

Hope everyone is having a great day themselves! I know for a Monday this one is actually shaping up to be a pretty fine one!

Many prayers and much love!

Yesterday was an absolute mental stress day. No names, no relationships, just putting this down or it’s going to gnaw at me all day. And I’m not about to let that happen again today!

Damn I hate a call from him first thing in the morning. It’s no way to start the day.

Does this merry-go-round ever stop?

OMG can’t I take a nap without waking up to THIS?

Does this merry-go-round from hell ever stop?

Nope, here it goes again…….

Checking out and dumping all your BS on me? I’m not surprised one bit.

You are CLUELESS! Totally CLUELESS!

Thank you for making me shake all over yet again.

Not being able to even walk on my own is beyond your’ comprehension.

I didn’t think I could seethe like this anymore after all I’ve been through but wow, you proved me wrong!

Believe me, I feel the same about you!

So hard not to use names here because I want to shout from the rooftop (If I could get there) but no one here would care about you anyway!

Just a mini decompression I guess but it helps……….just a little!

Take care! I intend to!

Last week I got a visit from a friend I haven’t seen since high school. It was a wonderful visit and we really caught up on the last 25 years or so. She has taken the time to create a Helping Hands program on Facebook for me. They are arranging dinners to be brought in Monday through Friday so my husband and family and I can actually spend time together each evening instead of him having to rush home from work (at 6) and cooking and us not eating until late.

They are also planning a benefit, complete with several bands, a hog roast, and raffles, and t-shirt and sweatshirt sales and who knows what else to help provide for us. Cancer is really, really expensive!

This came out of nowhere and is so touching I cry tears of joy at their love and prayers and support a lot these days! I knew people could be kind and caring but this goes so far and above anything I would have ever thought would happen to me. I find it truly amazing!

I just had to share how wonderful they are making me feel. It really helps my daily attitude stay positive.

Thank you dear friends!

During my short time away, a lot happened that I wanted to write about but didn’t because of the massive migraines I was having. I could barely complete a thought just in normal conversation, let alone write a sentence about how I was feeling.

It all started about a week before my February 6 craniotomy surgery. I was in the hospital February 1st and 2nd and they were doing multiple MRI’s to figure out why my back was hurting so badly. They did a spinal tap which indicated that there was excess pressure in my spinal fluid. As it turns out, I had broken my back and was hobbling around in so much pain and didn’t even know it. First I had to get through the craniotomy on the 6th. I wanted that initial tumor out of my head. So we did that. Healing took a while and finally mid-March I had an outpatient surgery to fix the small break in my back.

After that I did feel better. I was able to stand up and not feel like I was going to wipe out every time. Sadly another round of migraines started. And accompanied with this came the continuous vomiting. I was in and out of emergency rooms and even spent another 4 days in the hospital trying to figure out what was going on. I dropped 38 pounds during this and I would not recommend that type of weight loss to anyone. I was miserable. I was vomiting blood, and that’s when I finally got admitted to the hospital. Sadly they found NOTHING more than a little thrush that worked it’s way to my stomach. I saw my family doctor, countless ER physicians, even one who had the audacity to ask me “do you know how many times you’ve been here for this headache?” I was appalled. Yeah I came to the ER on Mother’s Day with a headache so bad I want to dig my grave and dive in because I have this minor little headache. Give me a break.

I saw a neurologist on May 17. They did nothing more than give me Neurontin for the headaches. No help! The next day I finally had my scheduled appointment with my Oncologist (whom I absolutely love and have total faith in!) He took one look at me vomiting in his office with my mom and feeling totally miserable. We went over all I had been through with the surgery to date and he immediately noticed that the CT scans were done without contrast giving NO results other than possibly a brain bleed, which I don’t have! So he immediately ordered an MRI with and without contrast for the next day. I had that test and results within 2 days. The tumor was back and then some – months of suffering and one test they never bothered to do revealed my problem. I was immediately scheduled with my neurosurgeon and the following week they did surgery to put a chemo port into my head. (btw I really like my neurosurgeon too). As soon as that healed (about a week) I was started in the whole head radiation program in our updated Radiation Oncology Center with a new doctor who I’ve already mentioned. He’s amazing!

So now we have finished the radiation – 4 weeks of whole head radiation that is. It hasn’t been easy. The side effects are the pits but hopefully everything turns out to be worth it. Next is a short vacation to just try to relax and feel like a real member of my family. After that, another MRI, praying for the ability of them to do Gamma Knife surgery and then we start on chemo. I don’t know how long chemo will last, but I definitely want to make sure we do whatever is necessary to get this vile disease out of my system.

That’s where we are now. Taking things one day at a time and trying to be as normal as we can since I’m feeling a little better.

So this past Friday ended my twenty days of whole head radiation. Now I get to do a little waiting, but for best results on the MRI, it will be worth it. They told me the radiation will continue to work for an additional 4-6 weeks and to get optimum results on the MRI and less chance of anything inconclusive. I’m willing to wait so they can make the very best determination of how Gamma Knife surgery will benefit me afterwards.

The biggest problem in waiting is one of the many side-effects I tend to get every step of the way. My head – my entire head – feels like it’s going to split open from dryness. I could stick my entire head in a vat of lotion and it would still feel dry and cracking. Top that with the Thrush that one of my medications gives me and my throat feels just as dry as my head. Then of course, you add the swelling to my feet and ankles and it makes getting around difficult. But I’m not letting that stop my motivation and attitude. I get up every day, shower and clean myself up so that I start each and every day looking the best I can just to help boost my self-esteem and help me generally feel better about myself.

I do want to brag on my Radiation Oncology staff a little bit. After my last appointment with Dr. Duncan (the idiot who made me feel like I deserved this) the hospital got rid of him and hired Dr. Einstein from the Cleveland Clinic. He is amazing. His first words to me were that if I ever have a question – it’s not stupid and it will never go unanswered. He’s thorough and kind hearted and he actually makes me feel completely comfortable in all my treatment to date. That’s such a nice change of pace. And then there is his amazing staff. All through radiation they were on time, treated me wonderfully (like a real human being) and were so very supportive. On my last day there for the radiation portion, I got to ring a bell signifying my last day. Sign a board indicating my completion, received a certificate, a nice tote bag, and a nice water bottle. Then to top if off, one of the techs had been on vacation to the Outer Banks of NC and she brought back with her a nice bowl of that beautiful sand and saved it for my last day to give it to me. That is totally personal and I couldn’t believe she did that. Talk about a thoughtful act of kindness to a perfect stranger. Those girls are amazing!

During our waiting period, we’re planning a somewhat short but much needed vacation. Not 100% sure where we’re going yet but it must have sand and some handicap access because I’m currently walker bound with the swelling in my legs. Oh and somewhat close to home – and finding sand in Ohio isn’t always the easiest. I don’t think I could do a long drive now because continuous sitting makes the feet puff up. But we’ll find something and get me a little change of scenery. Hopefully we’ll also make a nice family memory with the teens and lots of pictures. I am feeling the need to make a scrapbook about us having some fun for a change and not how long this has been going on!

I hope you all had a fabulous 4th of July! It is wonderful to celebrate how lucky we are to live where we live and feel defended by our men and women in uniform. (can’t believe I was one of them once – USAF!) They offer up the most unselfish sacrifice daily and we appreciate them from the depths of our soul.

Take good care and I will talk to you again soon!

This treatment has been so much more difficult than you can imagine. It creates such weakness all over my body that I have become completely dependent on cane, walker, and wheel chair. I did find a new Radiation Oncologist this time around. I like him and his staff so much better and I feel so much more confident in what he’s doing and how he’s treating me as an individual. I am really looking forward to just one more treatment though. I want so much to be able to even just do the minimal things without so much assistance.

One thing I have been incredibly lucky with this last month is my family. My mother is absolutely the most amazing mother in the world. She has been there nearly every single day taking me to and from radiation because I cannot drive. She has been so encouraging and she tries to find something special to do every day afterwards just to help me feel more alive each day. Then there’s my incredibly wonderful husband. I wouldn’t be able to function at all without him. He has taken a front seat to helping me with almost every single thing I have to do to make it through each day. And we cannot forget about Meg. She has been a complete angel. She’s been so helpful keeping my surroundings tidy and helping with meals among other things. For 17 she has really helped picking up the ball and running with it.

I know I ramble on and on about how good my family is being but it seems to be the one constant in my life right now that I can rave on. I need that!

I would also like to thank everyone for their encouraging words, fighting words on doctors, prayers and love. Those all keep me going so much more than you know.

As soon as I know when the next MRI is, I will let you all know. Not sure how quickly it will happen because the radiation continues to work after they’re done applying it but I don’t want to pay for an “inconclusive MRI” again. They are just too expensive. And if I qualify for more gamma knife surgery I want the info from the MRI to be perfect not questionable in any way. I just hope somewhere in all this we get to take our little trip so I can find a few days of new spaces and sand on my toes.

See you all soon!
Much Love!