Being thankful – a look back at the benefit

A heartfelt thank-you from my family to everyone out there!

This previous weekend a benefit was held to help my family out. With three family members dealing with medical issues all at once we have become financially overwhelmed. I am happy to say the benefit was a success. In this post (which I will try to keep short), I will share part of my experience of the benefit and try to express the thankfulness I feel.

Nerves were shot prior to the benefit

Prior to the benefit my nerves were shot. I am used to being the person that helps other people. It is a new experience for me to rely on the good hearts of others. I kept wondering if anyone would even show up. I kept wondering if people would think that because we own a business that we really didn’t need help. I kept wondering if maybe we weren’t deserving of help since there are other families out there in need of help. All of these thoughts, and more, kept running through my head.

Of course it didn’t help that on the day of benefit I was having a one of my rough days. I am sleeping very poorly and my energy levels on certain days are very low. In order to make it through that day I ended up taking energy drinks. I don’t really like drinking those. But before the benefit I had to drive an hour to watch my middle son in a basketball tournament. Actually going to the tournament probably calmed my nerves down more than anything. The boys played three great games. But as soon as the tournament was done I was back to being on the edge of what almost felt like a nervous breakdown.

On a side-note I want to mention that the coach brought some of the players to the benefit. This was such a pleasant surprise. It really brightened up Lawson’s evening, and mine.

The benefit

The benefit itself went really well. I was told there were about two hundred and sixty people in attendance. It was all very overwhelming. I spent the whole time trying to go from person to person and thank them for coming. I didn’t make it to everyone, which I regret. Many times I repeated how we were all doing. In particular I had to constantly try to help people understand what is wrong with our youngest son Ashton. He has some sort of hypermobility, which he is still going through the diagnosis process. It is hard for people to grasp a condition which places Ashton in a wheelchair on certain days, and he appears to fine on other days.

At one point I had the microphone in order to introduce my family to the crowd and say thank-you. This was one of the hardest things I’ve ever tried to do. I had become so emotionally overwhelmed with the outpouring of love and support for my family that I was having a hard time speaking. When I tried to say thank-you I kept having tears form and found myself unable to get coherent words out. More than anything this benefit has helped me to understand there are still good people in the world.

How to show my grattitude

Another big worry of mine has been trying to figure out how to show my gratitude. We are working on thank-you cards and an ad in the local paper to thank people. But that seems so insufficient for the amount of support shown to my family. At the benefit I was speaking to a person I know a little bit. She is technically a client of my wife’s and I’ve met her a couple times over the years. She gave the answer I had been looking for as to how to best thank the community. Here is an approximation of what I remember her saying:

Ken, I’ve seen you and Mindy give to the community in many ways over the years. I know you guys have helped other families out. When you guys are back on your feet just continue to do so. That is all the thanks I need.

At the time I was still so overwhelmed from being at the benefit that I didn’t give it a lot of thought. But since then I have thought about it a lot. I agree. The best way for my family to give thanks is to continue helping others. This financial hump is hopefully a short-term condition. As we realign our finances and hopefully get back on firmer financial ground it will be possible to once again help others out. I can’t think of any better thank-you than to “pay it forward” when we are able to do so.

Time to end this post before I ramble too much

Really all I wanted to do in this post was to say thank-you to family, friends, and the community for the overwhelming support they have shown my family. I can’t find the words to properly show my gratitude. Instead I will continue to help others when we are back on our feet and try to live by a pay-it-forward lifestyle.

Today’s song – What a Wonderful World

Today’s song comes from the Great Satchmo, Louis Armstrong. I don’t think this song really needs an introduction. The song is so filled with hope and love that I feel it is appropriate for this post.

Bonus Song – Thank you

Doing a post about being thankful brought this great Led Zeppelin song to mind. This song is actually a love song and it sums up how much I love my wife and am very thankful to have her.

The financial burden of cancer

Last week I mentioned in a post that I would start blogging about topics requested by others. I have received a lot of good blog ideas and have them placed in the queue. By far the most requested topic has been about the financial cost of being diagnosed and treated for cancer. In this post I will briefly write about how cancer and other medical conditions within my family have become a financial burden. In a future post I will blog about places people can turn to that have become financially by financing cancer treatment.

First I should note that I have pretty good insurance. My family has an individual plan that we spend a lot of money on every month to ensure we have good coverage. Since my wife and I are self-employed we wanted to make sure we had a plan that would keep our family covered for anything unforeseeable, such as cancer. There have been a few times where the insurance company has denied chemo or scans. But I think that is unfortunately normal for all insurance companies; and after being resubmitted by the hospital staff each procedure has been pre-approved. Yet even with good insurance the costs are adding up.

Part of the financial burden comes from the out of pocket due from all of these procedures. While its true there is a cap on the out of pocket costs. This cap is much higher than I understood and the bills have been piling up. With three family members going through major medical issues in 2018 my family reached that out of pocket quite easily. Now that we are in a new year we are once again starting to reach that out of pocket fairly quickly. I really don’t see how anyone without good insurance is getting through major medical conditions without feeling overwhelmed by the financial burden. Each round of chemo costs over $30,000 for the drugs alone.

A larger part of the financial burden comes from working. Or rather from having to change work habits. My wife runs a fairly successful business focused on tax preparation, payroll, and bookkeeping. For the last decade I have worked with her at helping to grow this business. Last year she had her heart attack and had to slow down on how much she was able to work. At the same time I was having my health issues and was unable to put very much work in at the office. This meant having to hire an additional full-time staff member at the office to pick up some of the slack. Having this new staff member has helped tremendously and we are very glad to have her. But the addition of this staff member also meant a large increase in payroll; and towards the end of the year it meant the payroll that went to my wife and myself had to be reduced. That is one of the dangers of having a business which relies upon a large amount of its revenue during one season. Any unexpected changes toward the end of the year means the business owners may have to suffer financially.

And then of course there is the cost of traveling and hotels. Luckily so far all of my diagnosis and treatments have been done locally. But my youngest son has been traveling to St. Paul, MN, and Sioux Falls, SD, fairly regularly to diagnose his hypermobility issues. These trips costs us thousands of dollars in 2018. Each trip we tried to get a cheap hotel and eat fairly conservatively, but it is amazing how quickly money flies out when traveling. Plus, since Ashton is technically still undiagnosed there are costs which insurance simply won’t cover yet. One of those costs was getting him a new wheelchair during the fall of 2018. His new wheelchair has helped him tremendously on the days he is unable to walk, but it was a definite unexpected expense. Like most of these expenses we had to use a credit card. I don’t even look at my credit card statements anymore. There are simply too many cards which have become maxed out. We are hoping with some adjustments to our finances in 2019 that we should get some of these cards paid down.

Over the last few months I have spoken with a lot of cancer patients talking about their financial situations. Many of them are in worse situations than I am. One theme I have noticed though is that many cancer patients are going through multiple health issues just as my family is. Some cancer patients have other family members going through major health issues, such as is happening with my wife and youngest son. Or even more common is that cancer patients have other major health issues that may or may not be related to the cancer itself. These additional conditions put even more financial stress upon cancer patients. As I said above, I plan to write a post in the future about different ways cancer patients can get some financial relief.

Talking about the financial burden of cancer is not easy for me. Even harder has been accepting financial offers of help from others. This weekend there is a spaghetti benefit set up for my family. I am so nervous about this event. I am used to being the person helping other people while they are in need. It is uncomfortable having to rely upon the goodness of others. But at the same time I’ve had to learn to accept this help because of the disconnect notices from utilities, car loan companies, and other places we owe money. First and foremost we have to make sure our family is taken care of, and that would be very difficult to do if we don’t have power or a vehicle to get places.

As I said earlier in this post, in the future I will blog some resources cancer patients can utilize to help them with financial burdens. In this post I shared some of the financial burdens being placed upon my family. I am definitely not looking for anyone’s pity. Rather I am sharing this in the hopes that other cancer patients know they are not alone in feeling overwhelmed by the financial burdens being placed upon them.

Today’s song: I’m Busted

The first song that came to mind when doing this post was I’m Busted from Ray Charles. On YouTube I found an appearance of Ray Charles on the Johnny Cash show featuring this song. This is a great musical artifact and well worth sharing.

Bonus Song – Seven Spanish Angels

After playing the song with Ray Charles and Johnny Cash I couldn’t help but remember Ray Charles and Willie Nelson singing Seven Spanish Angels. This is such a beautiful song and I often think of it when a fellow cancer fighter loses their battle.

The boys have really stepped up

The boys and I this Christmas.

One of my favorite things to be in life is a dad. That is one of the reasons I call this blog Dad Against Cancer. They may not believe it, but almost everything I do is to somehow make their life better. Part of my motivation to kick the cancer out of my body is so I can keep spending time with my boys and the wife. I have a feeling they want to keep me around for a while as well. In this post I will highlight a few ways the boys have stepped up to help me get through chemo.

First and foremost the boys have adjusted their home life to accommodate my needs. The boys wash their hands on a regular basis and use hand sanitizer to ensure I don’t catch a nasty virus when my immune system is low. This may seem like a small thing. But it can sometimes be a pain to get kids to do things like wash hands. The boys now do this without even being told. If they do forget and the wife or I have to remind them, they do it without a huff. Little things like that show they are taking my health serious.

Another thing done by the two younger boys, Lawson and Ashton, is to open doors for me in public. When we go out in public I try to avoid touching doors or anything that a lot of other people may have touched. Yes I do keep hand sanitizer with me, but it is much easier to just avoid touching things when the boys are helping out. In the few times we have gone shopping while I’ve been on chemo, the boys will push the cart and load it up with what I tell them. They even somehow have found a way to do this without fighting or hurting each other with the cart (well mostly, they are boys after all).

Over Christmas break my oldest son really stepped up. He is now back from college and has been transporting his younger brothers to school, basketball practice, band practice, and various other things. These are activities I love to do myself. But the last two rounds of chemo really brought me down physically. Dustin stepping up to cover for me helps more than he will ever know. During all this he also made sure I was fed. I am very proud of that young man!

There are many other things the boys have done to help me out. But I think the above examples show some of what kids of cancer patients have to do. I am dang proud of those three boys and hope to be around for many years so I can meet and be proud of their children some day.

Giving Thanks

19919789It is Thanksgiving today in the United States. Despite my diagnosis of non-Hodgkin’s lymphoma and going through chemotherapy treatments I feel there is a lot to be thankful for. Wait, make that because of what I am going through with cancer I know I have a lot to be thankful for. Going through cancer has made me appreciate just how good the world is and how great the people in it can be.

First I am thankful for my great neighbors. I have multiple neighbors who have offered to help around the house, have brought meals over, and a multitude of other things. I am truly thankful for these wonderful neighbors. Plus I think it has given my wife peace of mind knowing that as I sit at home recovering from chemo that any number of neighbors are a short call away in case she is unable to get a hold of me for some reason. Having good neighbors really reduces the stress on her.

Next up is friends and acquaintances. Sometimes in life it feels like I don’t really have a lot of friends. I’m sure a lot of other parents can relate to the fact that it is hard to have a lot of friendships when you are constantly traveling for kids sporting and school events. During times like this when I have cancer I found out how many people are willing to step forward and offer help. So many people have offered to help that I actually lost track. Even though I have not taken most of them up on their offer to help, I truly appreciate the fact they made the effort to help me and my family during this time.

Family has always been important to me, even if I never let them know. Both my family and my wife’s family have gone above and beyond to help us get through my cancer treatments. My wonderful mother-in-law has brought me meals while I do my chemo treatments and a brother-in-law has been there for me twice during chemo when my wife was unable to be there. My brothers and parents have helped just by being themselves and supporting me. I am truly blessed with family.

I am also thankful for the greatest wife in the world to help me get through my cancer treatments. Mindy is truly my soulmate and I don’t think I would be as mentally strong through this experience without her support. I only wish I could do something to reduce the stress on her. She really deserves a break.

Finally I am thankful for my boys. With my being on chemo the boys have had to put up with some major changes. They have handled these changes better than I believe many adults would. The boys have also stepped up to help me when they think I am overdoing it. My wife and I are truly blessed with great children.

To anyone reading this I would ask for you to think of those in your life you are thankful for. It is easy to get depressed or overwhelmed when going through cancer and/or chemotherapy. Instead of focusing on the negative aspects of cancer, I would urge everyone to stay positive and focus on people who are there to support you.

Adults have parents too

gpaboys
My parents and my boys.

Parents want their children to be healthy and live longer than them. As a parent I worry about the health of my youngest child. After visiting with my parents this weekend, especially with my mom, it occurs to me this extends to children who are adults as well. In this post I will briefly blog about some ways my mom is impacted by my cancer diagnosis.

Before going on I will say I think I have the best parents. I think my mom and dad did the best to raise me and my brothers with what they had available. As my wife and I raise our children I tend to look back to what they did as guidance.

During each step of my cancer diagnosis my wife and I have made sure to keep my mom in the loop. She got calls when I went in for a biopsy, got the biopsy results, saw my PET scan results, had my port installed, went in for my first chemo treatment, and so much more. Each step of the way she had to wait on the phone and hope for the best. Being two hours away she simply can’t just drop by. The emotional stress of waiting each time must be almost unbearable at times.

Actually it really doesn’t even matter how far away my mom is. Since I’ve started chemo both my mom and dad have been battling their own health issues. Because of my immune system being so low they have not dared come visit me until this previous weekend. I can’t imagine the tremendous emotional strain this has been for my my mom. I’m sure many people are asking her how I have been responding to treatment, and she has been unable to say something like “yeah, I saw Ken the other day and he is looking good”. Hopefully we can all stay healthy enough that we are able to keep seeing each other more often.

But it is not just me that my mom is being kept away from. My youngest son Ashton has health issues, which appear to be getting worse. The middle son Lawson is definitely a grandma’s boy, and she has been unable to see him. And of course my mom sees my wife Mindy as one of her own children. My mom has been staying away to ensure I don’t get sick, but in doing so she has been unable to enjoy her grandchildren and comfort her daughter-in-law. This further adds to the emotional stress she is enduring.

I do believe this blog has been helping her cope, and she has said as much. In this blog my mom is able to better understand what I am going through. When friends and family ask about me, she is able to refer to my latest blog post. In some way this blog can help her to share my cancer experience, something I think as a parent would be invaluable.

I’m actually going to keep my word and make this a short post today. All I really wanted to do in this post is to briefly highlight that the parents of cancer patients are greatly impacted; especially if their children are adults and no longer living at home. Even adults have parents…

Multimedia Friday – Videos to explain cancer to kids

Its multimedia Friday again. Today I thought I would post a couple of videos to help people explain cancer to kids. I know my kids have had questions about cancer and I think my wife and I have done a fair job of explaining things to them. But I also think using videos such as the ones below can be helpful to supplement talks with kids.

I think this first video is great to explain to kids how some things might change when a family member has cancer.

This next video has some tips for parents about how to talk about cancer with children. The narrator of the video focuses on a couple of different age ranges.

Finally this last video is an animated video to possibly help younger children understand cancer in a visual way.

Bonus Video

This weeks music video is from the Danish Band D-A-D. The lyrics from this song hit home for my cancer diagnosis. Especially the line “I got run over by truth one day”.

My wife thought chemo went differently yesterday

21265414
The wife fretting over me.

Yesterday I blogged about my third round of chemo. Overall I felt it went well, even with my blood pressure dropping quite a bit. My wife Mind however remembers yesterday differently. In this post I will briefly blog about how she though this round of chemo went.

 

First off Mindy agrees that my blood pressure was dropping. But she doesn’t see it as being no big deal. In fact her and one of the nurses were worried a bit because my blood pressure was dropping much quicker than it had the previous two rounds of chemo. My initial blood pressure was 130/68. It was 99/52 the last time it was checked. Telling her this is a known possible side-effect doesn’t make Mindy feel any better. It is just one of the things my poor wife has to worry about while I am on chemo.

Another thing other thing Mindy worried about yesterday was my dizziness. During this round dizziness seemed to be a larger side effect that it had been in the past. Even if I got up slowly to go the bathroom I would experience some dizziness. Mindy said it looked like I was about to fall over and I was very unsteady walking to and from the bathroom. I really think she wishes I would have called the nurse. But I couldn’t see calling a nurse for doing something so simple as walking to the bathroom. Mindy might have been right though…

Finally Mindy mentioned I was not sleeping as hard as I had during the previous two rounds of chemo. The Benadryl definitely knocked me out. But this time she said I would keep sitting forward in my chair and it would look like I was about to tip forward out of said chair. I don’t recall doing this. But I expect I was doing so because my back pain has been getting worse over the last few weeks. The shot I take to rebuild my bone marrow probably has something to do with my back pain getting worse. Sometimes the shots of pain I get are debilitating. But it doesn’t last long at high levels of pain and usually settles down to about a six on my pain scale. Mindy was definitely worried about this happening during chemo and me possibly falling forward onto my face.

I’ve said it before that chemo is hard on my body. It is also hard on my psyche at times. But I think in some ways Mindy is under much more mental stress due to my cancer than I am. It doesn’t help matters that we have a son with medical problem just as bad if not worse than my own. Hopefully I can find a way to reduce some of the stress on Mindy. She really has been a large reason I have coped so well with cancer so well.

Dealing with a sick kid today

110308293Updated: Luckily Ashton does not appear to have whooping cough, it is likely a very bad cold. But we have to wait for the test to come back just in case.

Having sick kids is part of being a parent. An old co-worker of mine used to call his daughters school a petri dish for illnesses. I can’t really argue with that. Being on chemo complicates matter for me trying to care for my kids when they are sick. In this post I will talk briefly about dealing with the boys getting sick.

Today my youngest son, Ashton, is sick. Again… He was actually in the doctor’s office two weeks ago and tested positive for strep . He also likely had some sort of stomach virus (Lawson also had a stomach virus of some type at the same time.) Ashton went through the whole regimen of antibiotics and seemed to be doing better. That all changed this morning. His throat hurts really badly and he cannot stop coughing. The more he coughs, the worse his throat feels. He also says he feels hot, but does not have a fever. Finally he has a runny nose. To complicate things there has been a reported case of whooping-cough in his school.  Today I’ll bring him into the doctor’s office to get diagnosed.

I am REALLY hoping Ashton does not test positive for anything like whooping-cough. With my immune system down and fighting the effects of chemo I could very easily catch whatever he has. This morning when he started coughing non-stop I put my blue mask on. But I wonder now if I was too late. I basically have him isolated in his room until we go to the doctor.

For the most part I have been doing OK dealing with the boys when they are sick. The wife and I generally keep them quarantined in one of their rooms. On some of the days they have been sick I have someone who comes in to help with the boys. Mostly to make sure they are eating and such. Luckily the boys are old enough they don’t need constant supervision. If Ashton does have whooping-cough I likely won’t bring anyone in. I am home all day and have already been exposed to his cough. I can’t see bringing someone else in to get sick. I will continue to wear my mask around him and use hand sanitizer anytime I have come near him or any surface he may have come in contact with. I can’t stop being a dad just because I have cancer and am going through chemo.

Hopefully the doctor will have good news for us today. But as I write this I hear Ashton coughing in the background and there seems to be a bit of a wheeze added to the end of his cough now. That poor kid, not only does he have to deal with his normal muscle problem, but now he had to deal with a cough that won’t end. I just hope I am able to help him without catching whatever he has myself.

Proud Dad Post: Lawson marching with HS band

GrotonBandThis morning I posted a music playlist instead of a normal blog post. I did this mostly because I had to be in Groton today to watch a marching band competition thing my son was participating in. Below is the video of the Ipswich HS Marching Band. Lawson is playing the quad toms. He is three rows from the back of the formation, two in from the left (as they stand). He did great. At about 2:45 he flips his drum stick.

On a side-note it was great getting out in public even though I am technically at the point my immune system is at a low point. I was just smart and stayed away from people. For the indoor part of the event I had my mask on and sat in a corner of the bleachers. Being on chemo is not going to keep me from seeing my kids at events such as this.

Here is the video.

Cleaning out my office

21792541Earlier this week I wrote about some ways my cancer diagnosis has impacted the little boys. Now I will focus on one of the many ways my wife has been impacted. I had to clean my office out at our business. Doing this has been more of an emotional blow to both of us than I would have imagined.

My wife and I own a tax preparation and business services company. When we moved back to South Dakota from the Minneapolis area about seven years ago I left the IT field in order to help her grow that business. It has been tough at times, but I am quite proud of the business we have grown. Buying out her mothers tax preparation business helped, but really it was the payroll side of things which my wife started that grew the most. She has put a lot of time and energy into growing the business. It has grown to a point we have had to add a few full-time employees over the last couple of years. At each step of the way I have been there to encourage my wife and support her.

About a year ago this started to change. Our youngest son started having muscle problems and on some days is unable to walk. This has meant him staying home from school a day or two each week. To accommodate this I moved my office to our house during tax season. The main function I perform at the tax office is to review returns. Since all documents are scanned into the computer it is actually quite easy for me to do my work from home. Even though I worked from home I still had a physical office at our office building. I would ensure every week I spent a day or two at the office. This was mostly so I could be close to my wife and support her.

When summer came about my breathing problems became worse. Between my breathing problems and taking the little boys to baseball practice/games I can probably count on one hand how many times I actually made it into the office this summer. Now that I am on chemo I don’t go to the office at all, at least not during business hours. There are too many people who come in the office with the sniffles or who knows what germs. I just can’t risk getting sick. Plus I will be on chemo until February or so, well into tax season. I definitely can’t be in such a confined place with people coming and going.

At the same time the business continues to grow. We just added another full-time employee and we are running out of space for people at the office. That led to the decision to clean out my office. This was NOT a decision made by my wife. In fact she tried to talk me out of it. I didn’t realize it but my having an office there has been a form of emotional support for her. Even if I wasn’t there physically she felt as if I was there in spirit through my office. When I told her I was cleaning my office out she felt as if I was abandoning her. The logical side of my wife agreed it was something that needed to be done. But that doesn’t make it any easier.

On Sunday as I placed the last box in my pickup I made a comment to my wife that she had gotten rid of me now. I meant it as a lighthearted joke. Her face instantly dropped. My cancer diagnosis has been tough on her and this was just one more thing cancer was taking away. Logically she understood why I had to clean my office out. But my moving out of the office is just one more thing that my cancer diagnosis has taken away from us.

I’ll end this post here. Something so simple as cleaning out an office may not seem like an emotional topic. But it really is. A cancer diagnosis takes so many things away from patients and their families. This move away from the office was a physical reminder of that reality.

PS. Hopefully today’s post made sense. I have a lot of “brain fog”, aka chemo brain, going on today.