My story shared by Sanford Health

Eight weeks ago, I allowed a film crew from the Sanford Health marketing department to follow me around for an evening. They then also sat with me for the first part of my maintenance treatment the following morning. This interview is part of Sanford’s “We’re In This Together” series of videos and stories of people like me going through cancer treatments through Sanford.

The story and video they made from this video can be found on the Sanford Health website. There is an excellent picture of my wife and me in the article. I’ve also included the video they made below for anyone to see. 

I have to admit it is peculiar seeing me on video. I’ve always preferred to be behind the camera and not in front of it. But I figure if sharing my story in any way helps someone else, well, then its worth getting out of my comfort zone.

Here is a link to the Facbook post from Sanford Health about my story:

I’m not going to post anymore on this topic today. It’s time for me to get ready for the latest maintenance infusion of Rituximab. I think this infusion will be about the half-way mark for me.

Song of the Day: Kodachrome

Even though this isn’t my regular blog post, I’m still going to do a song of the day. I’ve always loved this Paul Simon song. Since I had to keep posing in front of a camera for the marketing team, I couldn’t help but have this song come to mind.

Bonus Song: A Day In The Life

Somehow I feel my cancer story would have made an interesting addition to this Beatles classic. “I read a blog today, Oh Boy…..”

Explaining remission to people can get tiring

Today’s picture has nothing to do with the post. It is Thanksgiving later this week in the US. Happy Thanksgiving everyone!

As a cancer survivor, I consistently have people asking me about my current status. I don’t mind when people do so, and I generally let people know that I am in remission. What does get old, though, is some of the responses I get from people who misunderstand what I mean by remission. In this post, I will briefly touch on what remission means to me and what I have found it says to others. A fellow cancer survivor asked me to do this post so she could share it with her family.

The definition of remission

Before going on, I would share this definition of remission from the National Cancer Institute:

remission 
A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

National Cancer Institute

As I read the definition of remission, I can’t help but notice that the word cure is missing. I have always thought remission meant that cancer had been kept at bay for a short period of time. I never really thought remission meant anything other than that. But I’ve come to find out that others do.

Remission is thought of as a cure by some people

There are times when I tell people I am in remission they will say something like “oh, so you’re cured now” or “that’s great you were able to get rid of your cancer!” At first, I didn’t think much of it. But after this happened enough times, it started to become noticeable. I don’t know if it is because a lot of people have a different understanding of what remission is. Or maybe this occurs because people are hopeful that the remission is complete and there isn’t any cancer left in my body.

No matter what the reason, it just seems odd to me for people to act as if I have been cured after I say I’m in remission. Whenever someone acts like I’m cured, I can’t help but think of the maintenance infusions I go through every eight weeks. Plus, there are the scans I will likely have for the rest of my life to check the current status of my lymphoma. Even if my lymphoma never comes back as active cancer (which it likely will do), I will be treated by doctors as if I have a chronic condition for the rest of my life.

Learning to accept lymphoma as a chronic condition

I still don’t like it, but I’m learning to accept lymphoma as a chronic condition. Maybe that is why I get slightly irritated when other people seem to think I am cured. Perhaps people saying something about my being cured makes me remember that I am not cured and may have to go through full-blown chemotherapy again, or possibly something even harder on the body. I try not to think about what will happen when I fall out of remission. Yet, I find it hard to avoid the topic in my mind when reminded that there is currently no real cure for lymphoma.

Going forward I plan to stay positive about remission

Even though I get annoyed internally when people act as if remission is a cure, I try never to show my irritation. I hope to stay positive about being in remission. When people ask for more details, I let them know what lymphoma is and what my being on remission means. The person I am speaking with may someday have cancer or become a caregiver for a cancer patient, and I hope to pass on a positive attitude to them. Plus, helping to educate them may make their experience less of a shock when they have a personal encounter with cancer.

Today’s song: Don’t come around here no more!

Tom Petty and the Heartbreakers created the perfect remission song. In my head, I like to tell my lymphoma to stay away, and this song sums it up perfectly. This live version of the song shows how great of a group the Heartbreakers were. I feel sad I’ll never get to see them live again.

Bonus Song: Stand Back

This song obviously has nothing to do with cancer. But aside from the apparent “Stand Back” reference to being in remission, I can’t help but think of this line in the song: “No one knows how I feel, What I said unless you read between my lines.” That almost sums up trying to explain remission to people.

Bonus Bonus Song

OK, I know I usually only have two songs of the day. But, I can’t have both Tom Petty and Stevie Nicks on a list without posting the song they did together. That would drive me crazy if I didn’t include this song.

Launch of cancer podcast coming soon

I just wanted to drop a quick note to let all my readers know there is a reason I haven’t been posting a lot lately. In the last few weeks, I have been working with another organization on two very cool projects. The first project is a book I hope to have completed and published next year. This book will detail what my family and I went through going through cancer diagnosis and chemotherapy.

The second item keeping me very busy has been working on the podcasts. Yes, I said podcasts (as in plural). I’ve already mentioned I will be doing a cancer podcast. This project has moved ahead, and at the beginning of 2020, I will be doing a DadAgainstCancer podcast alongside this blog. The podcast will focus mostly on how cancer and cancer treatments impact family members.

Alongside the DadAgainstCancer podcast will be a second podcast dealing with veterans. This podcast will be similar to the DadAgainstCancer podcast. But it will focus on family members of veterans who are struggling. The as-yet named second podcast will deal with more than just cancer. Guests on this podcast will focus on what family members of veterans with PTSD, cancer, homelessness, or any other struggle, are doing to help their loved one.

I want to thank everyone for their continued readership and hope these new podcasts will be of use to some people out there. Also, in the future, the podcasts and this blog will have small advertisements. I’m hoping to do the advertising in a way that doesn’t become intrusive. Please bear with me as I implement all the upcoming changes.

PS. One other thing keeping me busy has been working on another book unrelated to cancer. This book is project management related, and I think it is kind of finished. I’ll know for sure after the editors are done tearing it apart.

Song of the Day: Video killed the radio star

Launching a podcast brings this classic Buggles song to mind. It happened to be the first music video played on MTV after the moon man landed. I decided against posting the original video. Instead here is a live performance from 2004:

Bonus Song: Radio Ga Ga

Since we are on the subject of radio. This track from Queen is just timeless. I wish I could have been at Wembley Stadium for Live Aid back in 95. I do remember watching it on TV though (probably on MTV, I can’t remember for sure)! Every wonder where Lady Gaga got her name….

Getting used to the CPAP mask

During my last post I briefly shared my experience going through two sleep studies. Overall I didn’t particularly enjoy the experience. But I did get some good sleep on the second sleep study. In this post I will share my experience about trying to get used to the CPAP mask.

First, a brief word about why this ties into cancer

Some people have asked why I am sharing my sleep study experiences on a blog about cancer. To them I say it is because going through cancer and chemo have completely changed how I sleep at night. Admittedly I’ve had sleep issues for many years. Being deployed to Bosnia while in the Army back in ’95-’96 was really the start of my sleep issues. But since going through chemo I have almost come to dread nighttime. I am tired of not knowing if I will be able to get enough sleep. I’ve spoken to many other cancer patients who have experienced the same problems since going through chemo. Many cancer patients seem destined to go through sleep studies.

Picking up the CPAP machine

Once the doctor ordered the CPAP machine I had to set up an appointment with the medical supply store. The appointment didn’t take long, about twenty minutes if I recall correctly. Most of this time was spent adjusting the mask to my face and getting a crash course on how to use and maintain the CPAP machine.

I would say the only problem we had when fitting the mask was deciding which size of mask to use. I happened to fall directly between two different sizes. The large mask was very uncomfortable, and the medium mask just seemed too small. After trying both masks on multiple times I ended up getting the medium mask. A month later I came back to get the large mask due to pain in my teeth (that had to do with an abscessed tooth, and will be the topic of a future post). In the end I went back to the medium mask and am happy with that. I only mention all of that because I want to relay the fact it is important to find the best size of mask in order for the CPAP experience to work optimally.

Luckily insurance paid for my CPAP machine, mask, and accessories 100%. Thanks to chemo and maintenance all of my out of pocket expenses were met back in January. I guess there is an upside to going through expensive medical proceedures.

I should note my wife was also recently prescribed a CPAP machine. When she went to pick up the machine she found out that it would cost hundreds of dollars due to insurance not covering the machine. This is the same insurance plan I am on. She refused to pick up the machine and the doctor has reordered the CPAP for her. It was probably one little thing wrong with how the original order was done causing insurance to deny the claim. It is very important that we patients are looking out for things like this and making the doctors fix any errors.

Getting used to the CPAP mask

Getting used to the CPAP mask is very hard for me. It has been a couple of months and I still am not used to it. At night I move around a lot. Having a tube sticking out the front of my face doesn’t work well when rolling over constantly. A friend of mine suggested I move the tube to going directly above me and then over to the machine. That small change actually made a big difference. Since doing that I haven’t once pulled the mask out of the tube.

It isn’t just the tube that is the problem. At night I appear to want the mask off. I can tell this because in the morning I will have found that I have taken the mask off at some point. Usually one or both of the clips will be disconnected. Sometimes I will find the straps have been undone. The medical supply tech noted that sometimes people will take their masks off at night when they awaken. This appears to be what I am doing. I am not fully awake at the time, I don’t once remember taking the mask off. But I am apparently awake enough to understand how to take the mask off. Luckily this is happening less often. I would say that about half of the time now I awake with my mask still on. That is much better than before when I would awaken every time with my mask off.

Has the CPAP helped?

This is a tough question. Personally I do feel better rested when I sleep with the CPAP machine going. I don’t seem to be getting any more sleep than before. Actually if anything I appear to be sleeping for shorter amounts of time. But the sleep I am getting appears to be much better quality and I am feeling better rested.

Here is a recent fitbit report showing one typical week of sleep patterns for me.

A couple of things to note in this report. The times shown sleeping do not add up to the times shown on the right. That is because the times on right reflect how much of that time is actually spent asleep, and not restless or awake. You can also see that July 1 appears to be missing. That is because about once a week I’ll have a day where I simply can’t sleep at all.

That three and a half hour average is actually down almost an hour when compared to a few months ago. But a few months ago the sleep graphs showed almost all red; meaning I was constantly moving and in either a restless or awake state. Having the CPAP machine assist my sleeping has allowed me to actually get some rest. (I should note I planned on showing a graph of three months ago for comparison, but my fitbit app is having issues and I’m not able to get that graph right now).

Wrapping it up

So yes, I do believe the CPAP machine really is helping. Going through chemo and now maintenance has made my already bad sleep habits even worse. But at least the CPAP machine does seem to be helping to ensure what little sleep I am getting is of a better quality. Getting used to the mask has been a pain in the rear; but again the irritation of wearing a mask is nothing compared to benefits of getting better sleep.

Song of the day

Today’s song has nothing to do with this post. Later today my middle son and I are traveling to JazzFest in Sioux Falls. We are both psyched up for this. One of the acts we are looking forward to is MarchFourth. Here is the song Swiggity they performed at the Sioux Falls JazzFest two years ago.

Bonus Song

Last year I attended JazzFest in Sioux Falls. One my personal highlights from all of the great performances came from the Zero Ted Band. It was just great to see a Zappa song played on the stage!

The sleep studies

I wish I could sleep like a dog!

Sleep problems have plagued me for years. Since being on chemo sleep has become even more troublesome. I’ve spoken with many who have gone through chemo and it appears a lot of us have sleep problems. Sleep studies almost seem to go hand in hand with cancer treatment. In this post I will briefly share my experiences with two sleep studies.

The first sleep study

Back in January I noted that I would be going through a sleep study. I really was not looking forward to the sleep study. The sleep study would be performed at the hospital. Unsurprisingly I really was not looking forward to sleeping in the hospital with a bunch of wires hooked up all over my body.

When I got to the hospital to check in I was even more nervous due to the fact the sleep studies are performed in the oncology ward. Really??? I am finally done with chemo and I have to spend a whole night in an infusion room? It actually makes sense for the hospital to have these tests in the infusion rooms since they aren’t needed at night. But it was still somewhat annoying for me.

The bed I had to sleep on was actually pretty comfortable. Two of the infusion rooms have beds that fold down from the wall. These were not the normal uncomfortable hospital beds. It still seemed weird sleeping in an infusion room however.

It took the sleep tech what seemed like forever to put all the probes on my body. Probes seemed to be hooked up to every limb. Getting all the sticky stuff off later was a pain in the rear! After getting everything hooked up the tech said he would be coming into the room at various points during the night to make adjustments to the machine.

That night it took me forever to sleep. I actually thought I didn’t get any sleep at all. The fact I looked at my watch at least twice an hour led me to believe this. Plus anytime I tried to roll over it seemed wires got in my way. According to the sleep tech I did fall asleep but I was constantly waking up. In his opinion he guessed the doctor would find me a suitable candidate for using the CPAP.

At around 4 am I had enough and told the sleep tech I was not able to lay down anymore and that I was ready to go home. He unhooked all of the wires from me and also had me sign some paperwork stating it was my choice to leave early.

Waiting for the results of the first sleep study

It took weeks for me to get the results of the sleep study. I had been told it would likely be two to three weeks to get my results. Two months later, in March, I was finally called by the doctors office. A nurse stated I had to have a second sleep study. Now that I think about it, I never have seen the results. I have however been told that when sleeping I stop breathing way too many times per hour. During my next doctors appointment I will have to ask how many non-breathing events per hours I have. For some reason I really can’t remember how many times the nurse told me I stop breathing per hour.

A nurse from the pulmonary doctors office let me know a second sleep study would be needed. In this second sleep study a CPAP would be equipped with the recommended settings. She said due to my number of non-breathing events per hour it wasn’t really a question of whether I needed a CPAP, but rather a matter of what settings needed to be used.

The second sleep study

My second sleep study went much better. Maybe it helped that was I extra tired that day. Or maybe the fact this time the CPAP was hooked up with the recommended settings meant I could sleep better. Either way I slept for a whole five hours straight. Sleeping that long uninterrupted hadn’t happened for a very long time.

Really the only part of that night I didn’t like was getting used to breathing with the CPAP. CPAP stands for Continuous Positive Airway Pressure. This means air is continuously pushed through the airway, which theoretically will keep non-breathing events from happening. Getting used to this continuous air being forced down my throat took some time to get used to. Usually breathing in is harder than breathing out. With a CPAP on, the opposite it true.

Conculsion

That pretty much sums up my sleep study experiences. At the time I really hated going through the sleep studies. But in reality they weren’t all that bad. In the next post I will share my experience of getting the CPAP machine and trying to use the dang thing at home.

Song of the day

Up first is a song from the Canadian band Barenaked Ladies. This is a song for insomniacs to be sure. This line keeps going through my head: “

With all life has to offer,
There’s so much to be enjoyed
But the pleasures of insomnia
Are ones I can’t avoid

Bonus song

For the bonus song I go back to 80’s from the Danish hairband D.A.D. I actually wish I could sleep my day away…..

I’ve regained the ability to write and will be expanding my cancer blog offerings

Getting back in the saddle again.

It has been almost four months since I last posted on my cancer blog. A lot has happened in this time-frame which is well worth blogging about; but that will come in subsequent blogs. In today’s post all I really want to do is let the many followers of my blog know I am still here. Also, I have many long-term plans for this site which I am very excited about.

Yes I am OK

Before going on I want to reiterate that I am OK. I have received a lot of emails and messages from people over the last few months wondering what happened to me. I plan to go into details in further posts. In the meantime, I can say that I believe a combination of brain fog and depression had set in. As I write my posts about what happened during the last few months, I hope other cancer patients in similar situations will somehow feel comfort knowing they are not alone. Hopefully anyone having problems will reach out for help. If I had reached out for help I believe things would have gone differently for me.

The exciting news: Videos

I do have some news I am very excited about! Just last week I closed the deal to have a sponsor for a series of video interviews I will be recording/editing/publishing. The official announcement will be coming in a few weeks. This will be a great opportunity for me to record the stories of other cancer patients and their families. It is my hope that these videos will be useful for the many people whose lives have been impacted by cancer.

Relaunching podcast effort

The other bit of news I have is that my effort to do a cancer podcast for patients and family members is being renewed. I have mentioned this in the past and was about to start the podcast. Unfortunately the person I had partnered with to do the podcast did not survive her clinical trials. That is another future post, and also one of the many factors that led me into depression. Now that I am ‘back in the saddle’ I plan to make the podcast a reality!

Sponsors for the blog

This blog is also going to have some general sponsors coming shortly. The details for this are still being worked out. But I want to assure my readers that having sponsors will not impact how I blog in any manner. Having these sponsors will allow me to focus full-time on blogging and trying to help others in the cancer community.

Thanks for all the support

I am very grateful for the support I’ve received over the past few months. Even though I didn’t return messages and did my best to avoid people, I did appreciate the attempts others made to check up on me. I am hoping to avoid any further bouts of depression and/or brain fog by focusing on making this a quality cancer blog that can truly help cancer patients and families. My renewed push for video and podcast content is a big part of that plan. I am feeling very hopeful about the future and hope this site can in some way give hope to others.

Thanks!
Ken Santema
Blogger, DadAgainstCancer.com

Bonus Song

I can’t do a blog post without having music! Up first is a song I’ve featured on this blog before. This track from Robert Earl Keen sums up how great it feels to be, well, feeling good again!

Bonus, Bonus Song

As a bonus I present a track from Bob Seger and the Silver Bullet Band. It doesn’t really relate directly to this song, but I want to play it anyhow.

How I keep track of meds

SONY DSC
My Pill Case

In yesterdays post I noted that I almost took my morning meds twice during my first cycle of chemo. That would have been bad. To prevent brain fog from causing issues when taking my medications I implemented a couple of changes to ensure I would keep on track. In this post I will briefly share those changes taken and recommend the phone app I use to track meds.

When I first started chemo I was simply taking my pills straight out of the bottles. At that time I only had to take a few pills in the morning and one in the evening. That seemed easy enough. After missing one evening pill and then almost taking my morning pills a second time, I decided it was time to take action.

Well, actually first my wife decided to take action. She went to the pharmacy and bought me a pill case which could handle a full weeks worth of pills. It also has multiple compartments for each day. The case she bought is pictured in this post. I really should have gotten a case like this right away, but I had resisted because I thought it made me seem old.

Having this case helped quite a bit to ensure I didn’t take the same pills twice each day. But it did nothing to help me actually remember to take the pills. After missing my kidney pill a second evening, I spent a lot of time on the internet researching various pill reminder phone apps. There are actually quite a few pill reminder apps out there. Some are good, and some are pure crap. Maybe someday I’ll do a few a full review of the various apps I tested out. But that goes beyond the scope of this post.

The app I ended up using is called Medisafe. This app is available for Androids and Iphones. I won’t do a full review in this post. Instead I will just list a few bullet points about why I like this app:

  • It is easy to enter my pills and schedule them.
  • The app is quite persistent to remind me about taking my pills. I get so annoyed at having to snooze the app that I am forced to take my pills no matter what I’m doing.
  • The app has information links about most of the pills I take. There is even a video for a few of them.
  • I can track my kids medications with their own profiles. To have more than one kid in the app I did have to pay for the full version. But it was worth it to ensure they are also taking their daily meds.
  • I can easily track when I take extra meds, such as painkillers or stools softeners.

For anyone with a smart phone I would definitely recommend the Medisafe app. Anyone without a smart phone has options as well. I’ve seen pill dispenser which include alarms on them. The main thing is make sure there is an alert of some type as a reminder it is time to take meds.

I’ll end this post here. This post was probably more of a review than anything. I will say that since I got the pill case and phone app I have not missed my meds once. The peace of mind that comes from not worrying about pills is well worth having yet another app on the phone alerting me.

Welcome to my new blog as I learn to fight against cancer

22092894Hello everyone, and welcome to my new blog. My name is Ken Santema and I have recently been diagnosed with lymphoma (wow, it sounds like an opening line in a support group, which this blog kind of is perhaps). I have been blogging for many years about technology, project management, and South Dakota politics. Now that my life has been turned upside down by a cancer diagnosis I am placing almost all of my writing energy into blogging about dealing with cancer.

On this site I will blog about a variety of topics. First I will be doing posts giving status updates so family, friends, and any other interested parties can keep up to date on my current health. Additionally I will be doing posts about how I am dealing with cancer emotionally. There will also be posts about how my family is coping and what we are doing to get through this as a strong unit.

Finally I will be sharing insight I have found on other blogs of this type. Reading blogs from other people fighting cancer has really helped me get through each day. I have hope that this blog may help others fighting cancer as well.

This welcome post is the only one I plan to do today, as I am getting quite tired. My first round of chemo started yesterday and even though I felt really good this morning I definitely am not feeling like writing anymore today.