Tired of being tired

I’ll often fall asleep while sitting around, but only for a couple of minutes at a time.

A constant theme from my cancer experience has been a lack of quality sleep. The lack of sleep has definitely impacted my personal and professional life immensely. Actually the reason I haven’t really blogged in the last few weeks is because I have felt too tired to do so (of course the other reason is I am working on creating a new podcast and a new video series). In this post I will briefly explain my current sleep habits. Later this week I will highlight how my personal and professional life has been impacted. Sharing this may help some other cancer patients in similar situations understand they are not alone.

Current sleep status (or lack of sleep status)

Currently I get only about three to four hours of sleep a night. Additionally, each week I will go one or two nights with no sleep at all. My current sleep issues seem to stem from multiple causes. First, I seem to have lost the ability to fall asleep. And secondly, I have a cough that won’t go away; which in turn wakes me up if I do happen to fall asleep.

As to not being able to fall asleep I have tried many cures. People have shared with me what works for them and I have tried almost everything that has been suggested. The only real thing that seems to work is to become so exhausted that my body has no choice other than to fall asleep. Part of me believes I also have problems going to sleep because I know I will be up shortly anyhow, so why bother trying.

Which leads to my cough. Since being on chemo, and now Rituximab (my maintenance drug), I have a cough that won’t go away. Sometimes I can go up to an hour without coughing. Then at other times I cough at least every five minutes. Laying down seems to make the coughing worse. Due to this I now sleep on a recliner, so I can keep my head and chest higher. This doesn’t really seem to help much at all. But I continue to do so because I feel I keep my wife awake all night when I sleep in the bed. I’m probably going to give up on the recliner idea and go back to sleeping in bed however. I fear if I spend too much time away from the bedroom it will make my wife feel she is somehow to blame; which is completely the wrong signal I want to send.

Results from the pulmonary doctor

I have gone through two sleep studies. Recently I had an appointment with my pulmonary doctor about my cough and sleep study results. He noted that on average I get about 9 non-breathing events per hour going through the sleep study. However when I entered REM sleep I would get about 66 non-breathing events per hour. He noted this is very dangerous and is the reason I was prescribed a CPAP. Since staring to use the CPAP he has noted I only get a few non-breathing events per hour, that is whether or not I am in REM sleep. So the CPAP seems to be doing what it is supposed to. But at the same time it has not fixed my other sleeping issues, other than to make sure I stay in REM sleep a little longer. I will admit I do feel better rested using the CPAP, even if the overall amount of sleep I get is not much longer.

Other than the breathing while sleeping, none of the tests or scans ordered by the pulmonary doctor have yielded any results. There are some minor lung issues that have to do with being a lifelong smoker. But nothing he is seeing would explain my constant cough.

Currently I believe the cough is just a side-effect of the maintenance drug Rituximab that gets infused into my body every eight weeks. Actually for about two weeks leading up to my maintenance infusions the coughing does seem to become less. Then about five days after my infusions the cough begins to get worse. I have spoken with other cancer patients who are experiencing the same side-effect with Rituximab. Since the maintenance infusions will likely keep me in remission longer, I guess I’ll just put up with this annoying side-effect.

Up next: how lack of sleep is impacting my life

In this post I briefly shared the current status of my sleeplessness. Later this week I will share how this lack of sleep is impacting my personal and professional life. This will likely be in two posts. Hopefully sharing my experience may help other cancer patients understand they are not alone. And maybe I’ll receive a sleep tip I haven’t tried yet that might actually work. I look forward to day when I am no longer tired of of being tired.

Song of the day

Today’s song really doesn’t have much to do with the bog post. Recently Ric Ocasek, lead singer for The Cars, died and I thought I would post one of my favorite songs from them. I’ve never been a huge fan of The Cars, but they definitely had some good songs. Plus I think this is great example of an 80’s music video.

Bonus song

The bonus song also has nothing to do with today’s post, other than the fact pulmonary doctors deal with lungs. This classic/weird song from Jethro Tull is just timeless. I like this version because I shows Ian Anderson in action.

Bonus, Bonus song

Jethro Tull has another song that comes to mind when talking about lungs and breathing. Plus this is another chance to see Ian Anderson in action.

One quarter of the way through maintenance treatments

Last week I was in the cancer center for my fourth infusion of Rituximab. This brings me up to half a year of being in remission. Since I did a post after my first round of maintenance infusions, I thought it would be appropriate to blog about the side-effects from this latest round.

Lack of sleep is still the main side-effect

My whole cancer experience has been an ongoing tale of sleeplessness. About a month ago I wrote about my sleep issues and included this chart showing how much sleep I get (or don’t get).

The above chart shows I really don’t get enough sleep. Now compare that to the chart below. This new chart shows all of last week and this week up until today (Friday):

It would appear I am getting more sleep by the pure numbers. My average seems to have increased to almost five hours per night. However that isn’t really true. My maintenance treatment was on the 7th of August. Notice how the 7th through the 10th (Saturday) have no sleep recorded. This was not a glitch of my fitbit. I really didn’t get any sleep those nights. Then for a few days I got very little sleep. Finally for the last two nights I got a good six hours. This has been great getting that much sleep, but I know it is probably unlikely to happen a third night in a row. Plus I didn’t have any sleep at all on Wednesday, which was prior to my two good nights of sleep.

My wife will probably read this and think “but I remember him sleeping those nights”. Well, no, I wasn’t. I tried to sleep and acted like I was sleeping. Mostly it was in the hope that pretending to sleep would make actually fall asleep. It didn’t work. One morning when she was sneaking around hoping not to wake me I actually had some headphones on listening to a audio book. I was desperate and trying anything to get sleep.

I’ve tried many things to try getting sleep. But it seems that for about a week following maintenance treatment that my already poor sleep schedule will become even worse. To keep my spirits up I just keep in mind that maintenance treatments should keep me in remission longer. A little lack of sleep due to maintenance treatments is a small price to pay for keeping cancer at bay.

Getting irritated about my irritability

Just as with the first round of maintenance, during this round I experienced some definite irritability. I don’t know if it is due to the steroids I’m given, or the fact my body just doesn’t feel right. No matter what the cause it seems to get worse each round. I find myself spending the week after maintenance trying to avoid people so I don’t fly off the handle at anyone.

There have been a few times in the last week I wasn’t able to refrain from snapping at people. Unfortunately it is usually my wife or my boys that are the receiving end of my irritability. They will feel hurt afterwards and left wondering what they did wrong. In all reality they probably did nothing wrong. It was just me being irritable for no reason at all. Luckily I have a great family and they seem to forgive my sudden irritable outbursts.

Just not feeling right

I mentioned above that I just don’t feel right after maintenance. This is a hard one to explain. Part me feels like I have light, almost flu-like, symptoms going throughout my whole body. But even that isn’t the right description of how I feel. All I can say is that the week following maintenance I feel “wrong”. Somehow every part of my body feels like something is physically wrong. But there isn’t any pain or anything like that. Perhaps it is all in my mind. Luckily that side-effect seems to last just under a week.

A year and a half of maintenance infusions left.

Lack of sleep, irritability, and feeling “wrong” are the main side-effects of maintenance I seem to experience. Technically I am a quarter of the way through my maintenance infusions. That leaves me with a year and a half of infusions left to go. Yes, even with these side-effects I plan to continue maintenance therapy. I’ve blogged previously about why I decided to go ahead with maintenance therapy, and still believe it is the right thing to do. I’ll just continue to put up with any side-effects in the hope I can gain more quality time with my family.

Today’s song: Behind Blue Eyes

I’m a big fan of The Who. Quite often during the past week I’ve had these lyrics stuck in my head:

No one bites back as hard
On their anger
None of my pain and woe
Can show through

Those lyrics seem to have taken on an extreme meaning for me the week following maintenance. My family and neighbors may think I snap a lot during this time, but they have no idea just how often I am biting my tongue to keep the anger from showing.

Bonus song: Who Are You

I thought sticking with The Who would be appropriate for this post. Actually I often ask myself this question after going into a fit of maintenance rage.

Bonus Bonus Song: Basket Case

This song keeps coming in my mind during maintenance week as well. Maybe I should talk my kids rock band into learning it. Its a great song, even if I’m not keeping it my head for the right reasons…

Dealing with constant tests and procedures

Some days I feel like a pincushion.

One aspect of having cancer is dealing with constant tests and procedures. Even being in remission does not seem to slow down the constant scans, blood draws, and incisions. Actually if anything it appears to be worse after chemo has stopped. In this post I will briefly share my experience dealing with the constant tests and procedures.

It seems the doctors constant want to scan or poke me

Prior to getting cancer I would rarely go to the doctor. Like many people I really don’t like going to the doctor unless I really need to. People like me tend to get somewhat overwhelmed once we have cancer and have to make constant trips to the hospital and clinic.

During chemo I was obviously at the hospital a lot. But even after chemo was completed I have had a lot of visits to the clinic to have scans or be poked. Below is a list of visits to the hospital and clinics I’ve had over the last six months since completing my chemo. Each of these visits was for a scan or to be poked.

  • PET scan to ensure I was in remission
  • Bone marrow biopsy
  • Second bone marrow biopsy due to the first one not working
  • X-Ray of chest due to breathing issues
  • X-Ray of neck/chest to see why port was not working
  • Ultrasound of neck to check on growth on neck
  • Biopsy of neck to check growth on neck
  • X-Ray of teeth due to abscessed tooth
  • Extraction of two teeth
  • Overnight sleep study at hospital
  • Second overnight sleep study at hospital
  • X-Ray of chest again for breathing problems
  • Ultrasound of lump on shoulder
  • Removal of large lump on shoulder
  • Removal of stitches from shoulder surgery
  • CT scan of chest and CT scan of abdomen to ensure I’m still in remission

The above list is the test and procedures I can remember off the top of my head (my hospital chart app won’t let me log in right now to see what ones I’m forgetting). It does not include the many doctor visits dealing with those tests and procedures. The list is also missing the maintenance infusions I receive every eight weeks (today happens to be another maintenance infusion day).

Not wanting to tell the doctor when something new comes up

All of these scans, tests, and procedures tend to get overwhelming. It has gotten to the point where I become very apprehensive about mentioning any new symptoms or issues I am having. I’ve spoken to many cancer patients who feel the same way. Just one little comment or question seems to lead to a new scan or procedure.

It’s not that I don’t understand that these scans and procedures are important. I really do. But nonetheless they do become overwhelming. It feels as if I spend more time at the clinic and hospital than I do spending time with my kids.

Stress added to family

It is not only me who feels additional stress from these constant tests and procedures. This spring my wife had a heart attack for the second year in a row. There are many factors in her hear condition, and stress is obviously one of those factors. Having to bring her husband to constant tests and procedures increases the stress upon her. Then of course there is the stress she feels waiting for the results of each test. I would say it is probably even more stressful for her than it is for myself.

My kids also have additional stress added to their lives with these constant tests. The boys try to hide any worry they have. Yet I have noticed they get more clingy and attentive after I’ve had procedures done. As a parent I can tell they are worried and trying their best to help me. I truly feel bad about putting so much stress on my boys, especially the younger ones.

Things likely won’t change

As I conclude this short post, I can’t help but feel things will not change going forward. I’ve spoken to many patients who have lymphoma spread throughout their body and bones like I have. For many of them the constant tests and procedures never slow down once remission has been reached. A large part of me feels I will be one of those patients that will constantly be visiting doctors until the day I die.

Don’t get me wrong though! I am very happy to be alive and will do what I need in order to remain alive. But that doesn’t change the fact that the constant scans and procedures are wearing me down.

Today’s Song: I don’t need no doctor!

For today’s song I go back to a classic track from Humble Pie. This song often goes through my head when I get tired of the constant scans and procedures. The song also reminds me of how much I really just want to be with my wife.

Bonus Track: Under the Blade

Today’s bonus track goes back to the 80’s with a song from the hair metal band Twisted Sister. This song is a bit heavier in style than what I normally share on this site. But the song has to do with dealing the anxiety of going into surgery (and not about suicide as it had been wrongly accused of back in the day).

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.

Why I chose not to use the hot tub during chemo

In this post I will tackle a question submitted by a reader of the blog. The person in question is going to start R-CHOP chemotherapy next month and wonders if I used a public pool or hot tub while I was on chemo. A real simple answer to the question is: No, I chose not to, but I know many chemo patients who have used both a public pool and a hot tub. In this post I will briefly share why I chose not to use my hot tub while going through chemo.

Germs and bacteria are one issue

One of the reasons many people chose not to use a public pool or hot tub during chemo is because of germs and bacteria. Both public pools and hot tubs are notorious as a breeding ground for germs. Technically if the chemical levels are correct this should not be an issue. But I’ve noticed that hotel pools in particular seem to be very bad a regulating the proper chemical levels.

Germs and bacteria really didn’t play much of a factor in my choice not to use a hot tub. My youngest son has some sort of muscle or joint issue for which he is going through diagnosis. As such he uses a hot tub we have for him at home. Since I am the person who controls the chemical levels in the hot tub I have no fear of excessive germs or bacteria being picked up in our hot tub.

I think anyone on chemo has to make a judgment call as to whether they feel safe going into a public pool or hot tub. The immune system of someone going through chemo gets beat up pretty badly. I could understand why many chemo patients would avoid public pools and hot tubs.

Neuropathy was a bigger concern for me

The main reason I chose not to use a hot tub during chemo was neuropathy. Many chemo patients suffer from peripheral neuropathy while undergoing treatment. I wrote briefly about peripheral neuropathy recently in a post about the EMG experience. I was warned by an oncology nurse that soaking in hot water for too long could increase the chances of developing neuropathy. And searching online I found many occasions where people using a hot tub or taking long hot baths would develop neuropathy.

I also happen to suffer from hot feet. This is something I’ve mentioned to many doctors over the years, but so far has gone undiagnosed because some bigger medical issue has been in the spotlight. To me it is almost unbearable to wear socks and shoes for an entire day. That is the reason I wear sandals year-round, including when we have sub-zero temperatures. Actually today the temp will be just above freezing so I will be wearing flip flops and shorts when I take my trip into town (don’t worry, I’ll still have a winter coat on). I figured that since I am already at a high risk for neuropathy due to my hot feet that I would not tempt fate by using the hot tub while going through chemo.

I have recently spoken with an oncologist (not mine) who recommends his patients not use a hot tub or hot bath more than fifteen minutes per day. He believes chemo patients should generally be OK as long as their exposure isn’t too long. But, in my case he said I was probably better off not having used the hot tub because of my hot feet. He also correctly guessed that my hot feet got even worse during chemo. Of course I spoke with another oncologist who said people going through chemo should never use a hot tub. I don’t think there is a general medical concensus as to whether the hot tub is safe for chemo patients.

It appears to be a judgement call

As I wrap up this post, all I can say is that I believe each chemo patient will need to make their own judgment call as to whether going into a public pool or soaking in a hot tub is right for them. Also make sure to speak with your oncologist and possibly even pharmacist. Between searching online and speaking to various oncologists, I have found many answers supporting and opposing the use of both public pools and hot tubs. In my case, I did not risk using the hot tub because I feared peripheral neuropathy. And while going through chemo, I would not have even considered using a public pool because of germs and bacteria. Now that I am off chemo however I soak in the hot tub almost every day and look forward to swimming in the lake this summer (another source of bacteria). Hopefully this post will help some people trying to make this decision for themselves.

Today’s song: Twisting by the Pool

Today’s song comes from Dire Straits. Twisting by the Pool is really doesn’t fit into Dire Straits normal music catalogue. But it is a fun little song and came into mind during this post for obvious reasons.

Bonus song: Marry for Money

Today’s bonus song comes from Trace Adkins and only came to mind because the song happens to mention a hot tub. Yes, Phil Vassar would have been a more likely choice with his hot tub song. But even though I think Vassar is a great songwriter, I’m not a fan of his singing. Plus I should get bonus points for including an Adkins song, who my wife is a big fan of.

Working and writing while on chemo and maintenance

I almost wished I used a typewriter. Crumpling up paper seems to be almost therapeutic.

One question that seems to come up for a lot of chemo and maintenance patients is whether they will be able to work while getting treatment. The answer seems to vary widely depending upon how each person reacts to treatment. In this post, I will share my experience of working while on chemo and maintenance therapy.

I should establish what I do for work

Before actually discussing my ability to work while on chemo and maintenance I suppose I should establish what I do for a living. The main this I do is write. I used to write a blog about South Dakota Politics called SoDakLiberty. When I became sick last year it just honestly became too much to keep up with that blog, and I stopped. Plus the amount of time I put into the blog really didn’t align well with what little revenue I got. To replace that I now do research and ghostwriting for others about politics. Ghostwriting isn’t a bad gig, but it does keep my name from being connected to stories I am quite proud of writing.

Additionally I am working on two different books. One is almost completed and I hope to publish it at the end of this year. The other is in need of major rewrites; more on that later in this post.

Finally, my wife and I own a tax and business services office. For the office I act as the IT guy and quality control. This time of year I am absolutely swamped. I have been spending about fourteen to sixteen hours a day for the last few weeks reviewing returns. Luckily I can do this from home by remotely connecting into my computer at the office. With corporate deadline being this Friday I should soon be able to slow down a little bit.

Working while on chemo was tough for me

From September through December of last year I was on chemo. During the first few rounds of chemo my side effects seemed pretty mild. The main two side effects that would impact my work was fatigue and brain fog. Fatigue is an obvious one that would affect someone who is trying to write. It is challenging to put words together when all you can think about is sleeping.

The brain fog, or chemo brain as it is often called, was by far a worse side effect impacting my ability to work. It was dreadfully difficult to write while my brain fog was at its worse. I found it difficult to put words in the correct order. Actually much of what I wrote at that time came out almost like dialogue from a Tarzan cartoon. I would then go back and rewrite those sentences many times. Doing a five hundred word post would take me a few hours at that rate. As a comparison, I am almost up to five hundred words in this post and have been writing for about fifteen minutes.

As chemo went on I found a way to combat the brain fog. Each morning I would play word and logic games for anywhere from one to three hours. This worked great. After playing these games, my ability to put words together seemed to be back to almost full capacity. As time went on I didn’t have to spend as much time playing these games. By the end of chemo I would only have to play these game about fifteen to thirty minutes a day to clear the fog.

During this time I did very little work for the office. The girls seemed to be afraid they would be an imposition on my recovery. At the time though I wish they had sent me more work as I was going stir crazy!

The fog wasn’t lifted as much as I thought during chemo

As I said, during chemo I was using word and logic games to clear the brain fog. This seemed to work well enough. Looking back at the posts I wrote I am mostly happy with what was published (I’m never 100% satisfied with my work). But then I recently looked at four chapters of a book I wrote at that time. To put it mildly, those four chapters are a disaster. None of the paragraphs seem to tie into each other, and I am continually switching directions in each section. It is as if I wrote each section in those chapters without actually knowing what was written previously. It is so bad that I have decided editing isn’t going to work. I have now deleted all four chapters and will have to start over. It was earlier this month I deleted those chapters, and I must admit a certain amount of depression occurred for a couple of days afterward.

Working while on maintenance

Maintenance has been a different matter. The work I have done on my book since being on maintenance has been normal. The cutoff point between a disorganized mess and actual writing appears to be about one month after finishing my final round of chemo. From that time on I only see the usual grammatical issues I suffer from (such as ending a sentence with a preposition).

It was also around that time I really had to step up and start working for the office more. Tax season hits hard at the end of January and continues hard until mid-March. This is because March 1 is the deadline for farm returns; which our office has a lot of farmer clients. And March 15 is called corporate deadline; which is when partnerships and S-Corps are due. Earlier I noted that I have been putting in long hours. For the last few weeks on a typical day I am working at least fourteen hours a day, shuffling kids between school and activities, and trying to write at least a thousand words either on a book or blog post. Part of this is possible due to my inability to sleep.

Insomnia has not relented now that I am on maintenance. Just prior to maintenance it appeared I was starting to sleep a little bit longer each night. After maintenance I am now back to only a few hours of sleep per night. Today as an example I went to bed about two AM and was up at about five AM. My work doesn’t seem impacted at all. Actually, I am able to write better than I have for ages. Perhaps sleep is overrated after all.

Time to get back to work

Now that I am over a thousand words in this post I probably should get back to reviewing tax returns; corporate deadline is this Friday after all! In this post all I really wanted to do was share my experience trying to work and write while on chemo and maintenance. When tax season ends, I can get back to writing and find out for sure whether the brain fog no longer impacts my ability to write books.

Song of the day: Working in a coal mine

No, I don’t work in a coal mine. But writing a post about working just made this song pop into my head. This version of the song became a massive hit for Lee Dorsey back in the 60’s.

Bonus song: Play Something Sweet

The above song was written by Allen Toussaint. He wrote and produced a large number of hits back in the day. This track from Three Dog Night is also a Toussaint song. It wasn’t one of Three Dog’s biggest hits, but I’ve always liked the song. Plus it happens to be about a person trying to perform their job, being a musician in this case.

Bonus Bonus Song: I never been to Spain

This song is not written by Toussaint. Hoyt Axton wrote this hit and it is one of my favorite Three Dog Night songs. Music has helped me get through many tough times in my life, including fighting cancer. Songs like this remind me that in this huge world I am very happy to be here with my family.

The week and a half following the maintenance infusion

It has been just a little over a week and a half since I had my maintenance infusion of Rituximab. Overall I would say maintenance has gone well for me. But I have experienced some side-effects. In this post, I will share how the last week and a half has gone for me.

Lack of sleep is back in full force!

In the post about my maintenance treatment, I mentioned taking a four-hour nap afterward. Unfortunately, that seems to be about the longest I’ve slept over the last couple of weeks. That night I slept for only a couple of hours. At the time I hoped my lack of sleep was due to having taken such a long nap. I also believed the steroids given to me during the maintenance infusion might have caused the sleeplessness. Both of those reasons could have been true for that night, but wouldn’t explain my sleeplessness since.

Since maintenance I seem to get about three to four hours of sleep a night. Every four or five days I seem to sleep about six or seven hours, most likely my body trying to catch up on sleep. I did have sleep issues prior to maintenance, but at that time I was back up to five or six hours of sleep every night. It is possible my sleep apnea is getting worse. This week I actually go back for a second sleep study to get a CPAP machine set up in order to help me sleep. I’m not really looking forward to sleeping with a CPAP machine. But then if it actually helps me sleep better at night I’m all for it.

Irritability came back!

As part of maintenance therapy I was given a steroid. According to my chart, the steroid given to me via IV was dexamethasone sodium phosphate, also known as Hexadrol Phosphate. This was also the steroid used during my chemo infusions. The only difference between maintenance and chemo is that I no longer have to take the prednisone steroid. But just like during chemo I experience some extreme irritability for a couple of days.

Previously I blogged about the rage experienced while on prednisone. I was much less full of rage this time, but there was still a definite irritability. For a couple of days I seemed to get annoyed and almost angry every time the boys fought. As a parent I know the boys will fight for no reason at all. Yet on one of those days I had a large confrontation with my youngest son that left me apologizing to him for a couple of days. Hopefully the kids understand I was not quite myself on those days.

The chills!

The chills can get quite annoying!

Since my last round of chemo, I have experienced the chills occasionally when going to bed. I hadn’t really thought too much of this due to the fact it is very cold outside and it didn’t last very long. On a typical night prior to maintenance I would experience the chills for about five to ten minutes. After maintenance therapy, I now experience the chills for about forty-five to sixty minutes per evening. The chills always seem to come when I am going to bed. Nothing I do seem to get rid of them.

I’ve spoken with other lymphoma patients that have experienced the chills after chemo is completed. There doesn’t seem to be a unifying reason as to why some of us experience the chills. One common reason given is that chemo causes early menopause. Since I am not a woman I don’t really think that applies to me. Part of me wonders if it is not due to the rituximab. Rituximab is the common drug I used both during chemo and during maintenance therapy. And the chills is a common side-effect of the drug. I’m hoping as time goes on this particular side-effect will either go away or at least get reduced.

Not a lot of side-effects

I don’t seem to have a lot of side-effects from maintenance therapy. The main side-effects I have is lack of sleep, irritability, and the chills. Overall I can live with these side-effects if it means maintenance therapy can keep my lymphoma at bay longer. Plus I hope that as maintenance therapy goes on my body will just adjust better and the side-effects will reduce each time.

Today’s song: I’ll Sleep When I’m Dead

Today’s song comes from Warren Zevon. This track is called I’ll sleep when I’m dead. Since getting lymphoma my wife doesn’t like me to use the phrase I’ll sleep when I’m dead, but I actually have used it many times over the years. The song has some obvious references to living life to its fullest. But at the same time there are references to being stretched a little thin. So much to relate to in this song, especially when experiencing sleep issues!

Bonus song: Poor Poor Pitiful Me

Actually, this song isn’t about me at all. My constant companion throughout chemo and maintenance is Lucy. She is a nine-year-old Yorkie and is always at my side! Of course, just like any other dog she thinks her life is so rough, and I often sing this Warren Zevon song to her.