Karen's Page

Welcome to Karen's Page, a web page intended to keep Karen's family and friends informed about her cancer. Karen, age 40, has a rare form of cancer called Pseudomyxoma Peritonei. She and her husband Tom have 2 children ages 4 and 7.

Wednesday, May 14, 2008

Hi to anyone who is still checking this blog.

Well, it's been 2 1/2 years since my last surgery - the big mother of all surgeries. It's also been almost 2 year since I finished my chemotherapy. It's strange to even think of that time now. Our family has settled in to a nice "normal" routine involving church, school, and sports. Hudson is now 6 yrs. old and is enjoying first grade and baseball very much! Tucker is 10 yrs. old and is doing well at school, his sports and his french horn. My life has changed a lot.

As you know The Pendleton Foundation was born out of my experience with having to raise money to have the surgery that would best save my life. The foundation has grown into a nice little business. I started working there in October, 2007. I go in almost every day and work until I have to get home to the kids at 3:00 p.m. I'ts been a little difficult going from a "stay at home mom", volunteering at school and church, to working almost full time. It's been great to help shape how the foundation is run. I've accomplished a lot, but I want to do so much more to streamline the operations. We get up anywhere from 2-10 applicants a week. The needs vary quite a bit. We focus mainly on household expenses while a cancer patient is in treamtent: going through chemo, radiation or surgery. There are so many needs that sick people have. I wish I had more money to meet them all. Maybe some day we will! But for now, we will focus on the household expenses.

There are a couple of cool things that have come out of my experience working for The Pendleton Foundation (TPF). The main this is all of the really neat survivors I have met. I wish to meet more, in person, in the future. Time does not allow it right now because we are getting busier and busier! The other, more recent, event is seeing the birth of another foundation. One of our recipients was a little baby who needed treatment at St. Judes Hospital. The baby is now doing very well. In response the the great generosity of the foks here in Coachella Valley, her parents have established a foundation to help families of children with cancer!!! That sounds familiar doesn't it? I'm really excited about it!

One of the reasons why I decided to post after all of this time is that it seems that cancer is affecting more and more of the people that are close to me. This may be happening because of the community of survivors, social workers, etc.... that I'm involved in. Some have said that I'm their inspiration. It has brought to my mind who my inspiration was. I think that when you are diagnosed with cancer, you rely on the advise from those who have had it before you. Then you progress in to a role where you are the one giving advice. It's domino effect, except instead of knocking each other down, we build each other up. My friend, Skip, comes to mind specifically. He was one of my first phone calls after I was diagnosed. I called him when I found out how much money I needed for my surgery. He helped organize a fund raiser for me because he was the recipient of one. I know he since has organized another fund raiser for another mutual friend of ours. He was, and still is, so giving of his experience and time. He, most importantly, prayed with me. He was so strong and I know he helped more people than just me. He also supported The Desert Cancer Foundation by speaking at their fund raising events. I know people were inspired by him in that avenue as well. He was, and still is, a great role model. My point is that I'm so glad that I had someone to pattern after how I chose to react to my disease. I'm so glad he was there to show me how to be strong and positive and faithful. My hope is that anyone looking at me will also see a strong and faithful person. I am not perfect - I get angry, have doubts and question God. But not for long.

Thank you Skip - from the bottom of my heart. You have made an impact in this community.

Wednesday, October 18, 2006

El Bloggo on the net

Where have I been? Oh, yes, that is the question. Since chemo has ended we have been remarkably successful at getting back in to what I would deem a “normal lifestyle”. Shoot, it has been so long at that now that I don’t really expect that anyone is reading the blog any more. In fact you may be the only one, and if that is the case then I write these words just for you.

It’s funny how in life you grow accustomed to things and make changes to accommodate and accept them as more normal the longer that they live around you. Since the surgery and chemo are done – in fact we are 1 month away from the 1 year anniversary of the procedure – I have grown used to the necessary changes in our lives and at this point, I have to tell you that things are pretty much normal. Sure, Karen visits the doctor every three months for tests and scans, we are on the lookout for strange things happening to her every day but . . . .it is not something that we wake up thinking about. I am used to the zipper that runs up and down her middle and it is now a part of her but not as a constant reminder of what she has gone through but rather as a part, now, of Karen. No big deal.

So it’s over for now and it may or may not come back. How’s that for a strange, vague outlook? No matter, it is what it is.

I am finding it difficult to believe that we are upon the one year anniversary of the surgery which also means that we are fast upon the two year anniversary of Karen’s cancer. You know, if you think that time flies fast in normal life as you get older, I submit that dealing with a cancer accelerates that by a factor of at least three. Where has the time gone? I surely don’t know but I do say this: I am looking forward to being home for the month of November, to having the family out for a real Thanksgiving holiday, and for a Christmas season filled with activities not based around home care and post-surgical trauma. ( I think Karen feels the same way. Ha!)

The second annual Chef’s Auction is only a few weeks away and it is going to be a great one. We have 20 of the Valley’s best chefs on board and they are going to be auctioned off on November 9 to raise money for the Pendleton Foundation. I think Karen has briefed you on this, so I will not re-do that but if you are in the valley and available that night, get your buns over there. We will be there, it will be a great deal of fun, and hey! You too can have your own chef for a private dinner and you can’t get that on Ebay. Don’t be shy! Call now and get tickets!!!! Talk to Gina at 760-202-6157 or get on the website and set it up. Don’t worry if you weren’t at the last one and don’t know what you are in for . . . neither do I!!!!!

Take care, all. I move forward in my new mental state!

El Bloggo

Tuesday, October 17, 2006

In the swing of things!

Hello Friends,
Well, I'm approaching my first year anniversary. I had my cytoreductive surgery with heated intraperitoneal chemotherapy on November 10th, 2005. I finished my folfox + avastin chemo on June 16th, 2006. I'm feeling pretty well, though not 100%, yet. I say - yet - because my energy level improves slowly and steadily.

Meanwhile, I've reentered my life. I am keeping quite busy! It seems I am more busy now than I was before my surgery! I'm trying to help in my kids' classrooms, at the school and at church. Tom and I are also pretty active right now with the Pendleton Foundation (www.thependletonfoundation.org).

Our fundraiser is coming up November 9th at Rancho Las Palmas. See the website for more information. The Foundation popped up after the community came together to raise money for my surgery. Everyone involved wanted to continue to help other people who face fighting a rare cancer. One of the things that is most frustrating about having a rare cancer is finding and getting to the doctors who have the most experience with the kind of cancer you have. So the foundation was formed to help patients get to the specialists they need to consult with and then help with any medical treatments. Everyone involved with the Pendleton Foundation has a heart for this cause.

Now, more personal information. I have been really struggling with overcomiting myself to things. I'm so eager to be active again and have a new desire to help other people. However, my energy level can't keep up with my ambitions. I'm trying to find the balance between, family, sports, church, school and Jazzercise. It seems that every sport my kids are involved in requires parents volunteers. I don't mind that, but it's hard to fit in! Jazzercise is a blessing in that it really helps me get stronger and blow off the stress of the day. I'm really thankful for my students and fellow instructors who support me so much. They don't seem to mind when I huff and puff toward the end of class!! People also expect you to be "normal" again. They want you back the way you were. It's hard to jump right back into your life after not participating for a while. I feel like I've been a couch potato for 8 months and am now trying to run a marathon with only 2 months of training. The transition can't happen that quickly! Attending Gilda's Club in Cathedral City has been a great help. The support groups there are great. What I like about it is that the groups are for anyone with any kind of cancer. There are a lot of support groups for colon, lung, breast and prostate cancer. Not too many for appendix/colon cancer! Gilda's club is so great. If you know anyone dealing with cancer, check them out.

Well, I have to run now. I really want to thank you for your continued interest. The adventure with cancer doesn't end when the treatment ends. There are new struggles and challenges. I never expected that.

Love,
Karen

Tuesday, July 25, 2006

My First Follow Up Appointment

Good News Everyone!

I saw Dr. Dreisbach today for my first post-chemo visit. I've been done with chemo for a month now. In the mean time, I've had my blood work done (CEA and liver tests) and my first CT scan since "the surgery". My CEA (a cancer antigen) was normal and so was my CT scan (other than my missing parts)!!! This is such great news, I can't even tell you. Tom and I expected to hear this news, because we know we've done everything possible to beat this cancer. But STILL, it was good to hear. My liver tests showed some inflammation, but that is a pretty typical finding, after chemotherapy. We will follow up every 3 months for blood work and every 6 months for CT scan.

How am I feeling, do you ask? Better and better. It's been a slower process than I thought (of course - I want everything NOW), but my energy is coming back. I'm starting to teach some routines in my Jazzercise class, and it feels so GREAT to be back on stage again. I can't do a whole class yet, but am working hard on it!!

I had my hair colored (for the first time since Oct. 2005) and cut today. I feel great about it. It's like I'm getting back to normal. I love the way it looks. Soooooo, things are going great at the Pendleton house. Ain't it great to say that? It's about time - after 8 months of big change.

Anyway, thanks to you all - AGAIN! Your prayers have helped me mend and heal. Only God know what's in the future, so I can't worry too much about it. I only hope that I can keep the lessons I've learned in the forefront of my mind and heart. For example.......1. God loves us and wants us to serve 2. Don't waste any moments in your life on trivial things 3. Prayer works 4. Ask for help when you need it - there are so many loving people who really love to help others 5. Persevere. There are so many others.

Peace be with you all.

Love,
Karen

Thursday, July 06, 2006

Let me tell you.....

Hello Friends,
I'm doing pretty well these days. Yes, I'm sooooooo glad that I'm done with chemo. It was a tough decision for me, because part of me wanted to finish the whole course of treatment. However, my neuropathy in my fingers and feet, was getting to a point that was uncomfortable and wouldn't go away or even lessen, before my next chemo appointment. My doctor said I didn't have to finish because there would be a chance that the neuropathy would become permanent. Seeing as I want comfortable feet to exercise with, I chose to quit. Plus, it seemed the right thing to do. The kids are home from school for the summer and this makes it a whole lot easier. They (and my honey) are so excited that I'm done.

It's taking longer than I thought to get my energy back, but it is definitely improving as time goes on. It's a slow, steady process.

I taught a few routines in Jazzercise earlier this week. It was so great. My students made me cry - they are soooo awesome. However, I think I overdid it, because I was pretty pooped yesterday. Walking to and from the Palm Desert park to see the fireworks, probably didn't help matters! The fireworks were so great. I really love to see them. The boys were excited, but didn't appreciate the long walk.

What's next you ask? Well, we watch it using CT scans and blood work. I will get my CT scan at the end of July. It will be a new challenge, to wait for those results. I think Tom is dreading this part of the whole adventure. What if it comes back? What do we do? I still am of the belief that it won't. It truly is out of our hands, anyway. God only knows and if it comes back He will have a plan by then.

Meanwhile, I intend to enjoy every moment I have. I'm anxious to get involved in the schools and church again.

Thanks for being so patient everyone. There probably won't be as many postings as before. Just know that being able to put down how we feel here has been very helpful in our adventure. You all have been so great. Please keep checking. You never know what we may share with all of you.

Love,
Karen

Tuesday, June 27, 2006

Chemotherapy Is Over. Film at 11

Remember that thing where I said that it was kind of nice to ignore what was going on and live a normal life? Well, we have been doing that and it has been working well. We have been on some camping trips, Hudson and I spent a weekend in San Diego with Barnaby and Moby on a trip to Legoland for his birthday (he is a big 5 now), I have been working on what I am working on (ain’t that cryptic?) and school has come to an end. Karen went to the Jazzerjam convention for the weekend last week (She traveled to beautiful Palm Desert, California – a tiring but rewarding 10 minute drive from home!) Tucker is now ready for 3rd grade and is, at this writing, bored already.

Karen has worked through chemos up to #11 and that is where we stand. Her neuropathy has been getting bad, though, and is settling into her fingertips, toes, the bottoms of her feet, and her throat. It makes it hard to do fine motor things with her hands as the feeling is dicey at best, and they are now really sensitive to cold. Her feet feel the same way, and she has had to give up knitting with her toes which is a real shame. When anything cooler than lukewarm is swallowed, she describes it as “swallowing electricity.” Many of the feelings that she has experienced I have not been able to really understand but that particular description hits home. Not that I have ever kicked back a glass of 220V but . . . I get it.

So at # 11, Dr. Luke was talking to her about this and advised her that if she wanted to stop at 11 chemos that would be OK with him because there is a chance that if she continues that the neuropathy may become permanent. “11 chemos, 12 chemos, it won’t make much difference in the big picture.”

Now was I offered this I would hesitate for one, maybe two seconds, and then say “I’m done.” Karen had to mull this over and talk about it for quite a while because if the manual says 12, then it means 12. Not 11, or 13, but 12. Why would the doctor have said 12 if he meant 11? Argh. Scientists.

So we looked at the big picture: Chemo was advised, but prophylactic. (Preventative, for we who speak plain English.) She has done 11 of the 12 which is overwhelmingly substantial. In fact, it is 91.66666666666666666666666666 percent complete.

That’s an A.

Plus the looming possibility of permanent nerve issues is not worth it in itself as we remember that a big part of this journey is Quality of Life as we go, not how much medication can we slam.

Then I applied my Tom logic to the situation, and actually scared myself with the starkness of it. When I first said it, it was almost in jest but it brought into the light the scary as well as the happy:

“ One more is not going to make a big difference. If we have not killed what we are trying to kill by 11 treatments, chances are we aren’t going to wipe it out with one more anyway.”

So there you have it! We are done with chemo. Done. Over. Bye Bye. Our thanks and a hearty “don’t worry about it!” to our meal supporters over this ordeal. We are done!

Karen wasted no time. She is already learning new routines for Jazzercise and even purchased an Ipod for her classes. At about chemo 8 I built a new cart for her sound system and she is now styling.

Our next big hurdle is not a hurdle at all – it’s a Road Trip!!!!!!! This summer’s SANT is to northern Montana. I won’t bore you with the itinerary but suffice to say we are going to travel 3000 miles, most of which I have not seen. We shall burn large quantities of fossil fuels! We are going to camp our way north, hopefully meet up with the Rudds for a few days of camping and then get with the whole Kepke clan for a week at Swan Lake, Montana. We are leaving at the end of July and coming back mid August. I am very excited, can you tell???? Moby is ready to go, and Barnaby is getting ready. I have been blessed with not only a place to keep him inside, but a place to keep him inside that is a fully equipped shop! I am giddy, and a now that I don’t have to do the little things in the street in front of our house, I have some odds and ends underway that I have needed to do for some time. So for the first time in his 31 years, Barnaby lives inside! Sure, this is not a big deal to anyone but me . . . but humor me. The entire family is counting the days and I do think it is one of the most anticipated trips our family has gone on in a long time.

So now what? Are we done?

Well, we hope so. Hope must spring eternal and to that end we will settle into a mode of checking on the cancer every three months or so with blood work and the occasional CAT scan, although we hope to catch any offenders long before they are big enough to be seen.

I think, for me, that this will be the most stressful part of the trip so far because there is nothing happening. We are not doing surgery, going to another specialist, or doing chemo. If there is something still there, this is its chance to rear its ugly head and then we have to react to it. I hope that I do not become like some of our more senior citizens in the valley who simply live between doctor’s appointments. I will do my best not to do that. I don’t know if I will feel good about these quarterly check ups because of the continued chance that there is nothing wrong, or that I will dread them because of what might show up.

I know, I know. I KNOW. I am the optimist, and I have always preached that you can’t worry about the future, but I may soon find that easier to say than do. On the other hand, my faith is going to continue to be the major player here and I must remember that 1) this is God’s plan, not mine or Karen’s and 2) I don’t/can’t/won’t/don’t need to know the timing of what may or may not happen. Deal with today.

The good news is that we have done everything there is to do to kill this thing. We could not have done anything more. Period. There were no more ectomies to be had – and I know!

I find it interesting to review some of the things that we heard and/or people heard going in versus what really happened. Most of them you have read about in this blog but it is worth having a look at again.

Tale: No way to treat the cancer. Just do a couple of operations and you’ll be done in a few years.

Fact: There were lots to do. Surgeries, chemo.

Tale: The Sugarbaker surgery requires removing all of Karen’s skin.

Fact: Skin in tact. Missing may parts, but skin looks great.

Tale: There was virtually no chance of surviving the surgery.

Fact: Duh.

Tale: Karen would be in a coma for 5 days.

Fact: Karen was coherent with her eyes only a few hours after the surgery. Fortunately or unfortunately she was not in a coma for 5 days. Can I get an Amen, Mark?

Tale: (one of my favorites) No one has survived this surgery.

Fact: Ha!

There are more, surely, but I can’t remember them. It seems a long time ago.

So I sign off for now, and we will continue to update the blog from time to time.

I promise.

El Bloggo

Monday, June 19, 2006

Chemo #11

HI Friends,
I'm done with chemo #11. So far, I'm doing okay. The neuropathy (tingling/cold sensitivity) in my toes and feet have worsened. I expressed my concern to my doctor and he said, if I wanted to, I could skip my last chemo treatment if I felt the neuropathy was too bad. Apparently there's a possibility that the neuropathy can stay permanent if the symptoms get bad enough. I really don't want that to happen. So, I'm in a quandary, really. I don't want permanent neuropathy, but it feel weird about not finishing all the rounds of chemo. I'm not sure how I feel about it. My doctor is in the business of curing cancer, so I'm sure he wouldn't have suggested stopping the chemo if he thought it would harm me. So, I could use some prayers to help me decide what to do.

School is out and the boys are very active. Fortunately, they are attending Summer Spectacular at Southwest Community Church this week. I can't wait to hear what it's like. I am not volunteering, for the first time in 3 years. I miss it, but knew that I would be rather unreliable. Tom, of course, is participating as Captain Smirk. This will be Hudson's first year to experience all of the venues of the program. I can't wait to hear what he thinks. Pastor H does such a great job reaching the children. They had 800+ kids already registered. So, this might be a record breaking year for attendance!

Well, that 's if for now. I'm really tired of the chemo treatments. I'm surprised at my reaction, since I'm almost done. I thought I would be more excited about being so close to finishing. But all I can think about is how tired I am of being tired!

Love,
Karen