Losing a friend to cancer

Last week I mentioned that I had lost the ability to write for a few months. There were many factors that likely led to this condition. Looking back I believe one of the biggest impacts on my state of mind had to do with losing a friend to cancer. In this post I will share that experience.

I’ve mentioned many times on this site that I plan to do a podcast. As fate would have it I found another person via a Facebook cancer support group who shared my same vision for doing a podcast. For the purpose of this post I am going to call her Jane. This is not her real name, but I explain later on why I can’t use her real name.

We recently met to work on a podcast

Jane and I both wanted to do a podcast dealing with the family side of a cancer diagnosis. In the podcast we planned to have guests that included cancer patients and cancer family members. I have found sharing my experience on this blog has helped a lot of cancer family members out. Together Jane and I thought we could do even more to help cancer family members understand they are not alone. Plus, Jane had some experience in radio years ago and had what I would consider a perfect voice for a podcast.

Jane and I spent much of January, February, and March going through various ideas about what to do with the podcast. Due to my tech background I spent a lot of time figuring out the “hows” of doing a podcast; while Jane worked on creating podcast outlines. The whole process was great and I enjoyed working with her on this project. Even though we only knew each other a few months, I considered her a very close friend by the end of March.

As early April approached we decided it was time to take our idea to the next step. Jane and I decided the next step would be to contact a podcast guru I know of in Sioux Falls, SD, who is the media genius behind The Sioux Empire Podcast Network. Our plan was to speak with the guru and present him with our ideas. Perhaps he could give us any pointers and we hoped our podcast might be a good fit to include with his current lineup of podcasts. Accordingly I had finished the draft of a proposal and waited for Jane to give her input. That input never came.

Worrying about a friend

After a couple of days of no reply from Jane I began to get worried. I knew she had recently fallen out of remission and was going to be going through chemotherapy again. Even though we had become friends, I actually know very little about the current condition or history of her cancer. Jane really didn’t like to talk about her health issues and I respected that. Now that I was getting no reply back from her I kept wondering just how bad her fall from remission was and worrying about whether she would be OK.

Days turned into a couple of weeks and I still had not heard from her. I messaged her on Facebook and left a couple of voicemails on her cell phone and land line. No reply ever came from Jane. Her Facebook presence had simply stopped the day I sent her the proposal. As each day progressed I got more and more worried about her. Looking back I really should have shared my worries with my wonderful wife. But it was the busy season at our tax office and I did not want to bother her. I think my lack of sharing this with my wife caused my emotional state to become even worse.

Finally I get a reply of sorts

Just over two weeks after I last heard from Jane I finally got a phone call. The call came from Jane’s granddaughter. It was not a good call. During the call I found out Jane had died gong through surgery. I was devastated after hearing this. Even though I had my own cancer experience, I was not really prepared for the possibility I could lose a friend to cancer. I didn’t know what to say.

Jane’s granddaughter then began yelling on the phone. Due to my being stunned from the news of Jane’s death and my bad hearing I actually didn’t catch all of what she was saying. But I did get the important parts. I found out that Jane had previously decided against having any more procedures done. But after associating with me and working on this podcast project, Jane decided she wanted to go through with a risky procedure in order to better battle cancer.

It was then Jane’s granddaughter let me know the family blamed the podcast project for her death. They believed if Jane had not done such a risky procedure that she would still be around. Further she said I was very evil for giving her grandmother false hope and that I was personally to blame for her death. That struck me hard. She went on further to state that I was not allowed to use Jane as part of my blog and that her family would be watching to be sure I don’t. I have respected that wish by changing Jane’s name, but nothing else has been changed.

If I recall correctly, the only thing I said towards the end of the phone call was “what”. After that Jane’s granddaughter yelled something else I couldn’t understand and hung up the phone. That was the last ever heard from Jane’s family, and I doubt I will ever hear more from them again.

Depression set in

I felt as if I had just been accused of murder. Well I think I really had been accused of murder. Not only had I just lost a friend to cancer, but I was being told it was my fault. I didn’t know how to deal with this. I didn’t know how I should feel or what I should do.

Instead of seeking help from my wife or someone else I simply kept it bottled inside. I did not want to bother anyone with my problem. Part of me also felt guilty for being the cause of Jane’s death. The intellectual part of me knew I had nothing to do with Jane’s passing. But a big part of my heart kept telling me the granddaughter was right in accusing me of causing Jane’s death. Even today I still somewhat feel that way.

As April moved on I became more and more withdrawn. I would put up a front when out in public so people wouldn’t know what was going on. But I know some people, such as my wife, knew there was something wrong. Sadly I never shared this experience with anyone until writing this post. Had I done so sooner I believe depression may not have set in so deep.

Moving forward

Going forward there were other factors I believe led to my bout with depression. However the death of Jane was the big event that really started my downward spiral. Even today I do not believe my depression is completely gone. But I know I am much better emotionally now than I was just a few months ago. Part of me hopes by writing about the past few moths will help me work through any lingering depression.

PS

This post took three days to write and rewrite. Just today I removed almost 1,000 words talking about how I felt. None of it made sense, so it had to be cut. I will possibly try in a future post try to pass on what I was feeling and experiencing.

Today’s song

It is my custom to play this Terry Jacks song when a friend or relative dies…

Bonus song

The podcast will happen. I am currently working on finding a new partner for the podcast. She would have wanted that. Sing it Freddie…

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.