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.
Today I want to briefly blog about the worse side-effect of having cancer. It isn’t the fear of dying, nausea, or any of the multitude of side-effects that come from chemotherapy. No my biggest fear has become losing the ability to use my mind properly. Many people with cancer will experience something referred to as “brain fog” or “chemo brain” (or many other names). For the purpose of this blog I will stick to the term “brain fog” because it describes what I feel the best. It is my fear that any brain fog I experience will continue beyond chemo. In this post I will touch briefly on the subject; but this will likely be the topic of many future posts.
I’ve made a living using my mind. In the Army I was a communications technician. I went on the IT field where I eventually became a Network Engineer and Project Manager. Over the last few years I have been a writer and tax preparer. Basically I have spent most of my adult life relying upon my mind to make a living. I hope to continue making a living utilizing my mind. I fear however that may not be as possible as it was once.
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.
Though chemo brain is a widely used term, it’s misleading. It’s unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience.
Despite the many questions, it’s clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.
Over the last couple of months it has become very hard for me to organize my thoughts, especially in activities which require multiple steps. I can still do so, but I have to take more time and document things more than I used to. In the past I would create a mental flow chart of tasks to be performed. Now I find myself having to actually physically write things down to be able to see how a process should flow. This change started during my first cycle of chemo, so I am hoping it will go away after chemo has completed.
Another big change I’ve noticed is short-term memory problems. We all have moments where we walk into a room and forget why we went in there. That is happening to me all the time now. I have to document my tasks throughout the day so I don’t accidentally do something twice that I shouldn’t. On one particular day I almost took my morning medications twice. Luckily my wife was around to set me straight. Since that time I made sure all important things such as medications and meals are documented.
I call my condition brain fog for a reason. There will be times I just can’t seem to put thoughts together, as if the words I need are just out of reach in the fog. It is difficult to describe, but it really does seem that a fog has set inside my head. Today is a good example of that happening. Off and on and throughout the morning I tried to write a blog post, but couldn’t. The fog was too thick.
Going forward I hope the brain fog will go away when I am done with chemo. I have four to six more chemo cycles remaining. The problem is I know at least the memory problems have been happening since way before I started chemo. I believe I’ve had memory problems for months actually. It does however seem that the brain fog became much thicker after chemo. That would lead me to believe that chemo is in some way making my brain fog worse (unless the brain fog is making me think that).
I have been trying various things to battle against the brain fog. The main thing that seems to help is playing word and logic games. Hopefully when chemo is done the fog will lift some and I can feel I have my mind back. Actually, writing posts on this blog seems to help as well. At least it helps when the fog will let me write a post…
Updated: Luckily Ashton does not appear to have whooping cough, it is likely a very bad cold. But we have to wait for the test to come back just in case.
Having sick kids is part of being a parent. An old co-worker of mine used to call his daughters school a petri dish for illnesses. I can’t really argue with that. Being on chemo complicates matter for me trying to care for my kids when they are sick. In this post I will talk briefly about dealing with the boys getting sick.
Today my youngest son, Ashton, is sick. Again… He was actually in the doctor’s office two weeks ago and tested positive for strep . He also likely had some sort of stomach virus (Lawson also had a stomach virus of some type at the same time.) Ashton went through the whole regimen of antibiotics and seemed to be doing better. That all changed this morning. His throat hurts really badly and he cannot stop coughing. The more he coughs, the worse his throat feels. He also says he feels hot, but does not have a fever. Finally he has a runny nose. To complicate things there has been a reported case of whooping-cough in his school. Today I’ll bring him into the doctor’s office to get diagnosed.
I am REALLY hoping Ashton does not test positive for anything like whooping-cough. With my immune system down and fighting the effects of chemo I could very easily catch whatever he has. This morning when he started coughing non-stop I put my blue mask on. But I wonder now if I was too late. I basically have him isolated in his room until we go to the doctor.
For the most part I have been doing OK dealing with the boys when they are sick. The wife and I generally keep them quarantined in one of their rooms. On some of the days they have been sick I have someone who comes in to help with the boys. Mostly to make sure they are eating and such. Luckily the boys are old enough they don’t need constant supervision. If Ashton does have whooping-cough I likely won’t bring anyone in. I am home all day and have already been exposed to his cough. I can’t see bringing someone else in to get sick. I will continue to wear my mask around him and use hand sanitizer anytime I have come near him or any surface he may have come in contact with. I can’t stop being a dad just because I have cancer and am going through chemo.
Hopefully the doctor will have good news for us today. But as I write this I hear Ashton coughing in the background and there seems to be a bit of a wheeze added to the end of his cough now. That poor kid, not only does he have to deal with his normal muscle problem, but now he had to deal with a cough that won’t end. I just hope I am able to help him without catching whatever he has myself.
Going through chemotherapy is hard on the body and leaves the body fatigued. Getting a lot of sleep is important to heal the body. But I find myself going from sleeping constantly to now getting almost no sleep. In this post I will blog about this transition from two different sleeping extremes.
During my first round of chemo I basically slept the day away. The following few days weren’t much different. After that I was able to function pretty well by getting a good nights sleep and a nap in the afternoon. There were still some days during I would get more fatigued, but that would usually go away after my afternoon nap.
A week and a half ago I had my second round of chemo. Just as before I basically slept through chemo. Now I know this is likely due to the fact they inject me with a large dose of Benadryl. The two days following chemo I also napped a lot. This seems to be normal for chemo patients. After that things seem to go different from my first cycle of chemo. Actually things have changed so much I almost wish for the days when I would seemingly nap nonstop.
This time around I find myself unable to take a nap in the afternoon. I still feel exhaustion requiring me to take a nap and I definitely lay down for a nap. But no matter what I do I can’t fall asleep. On a couple of days I have been able to lightly snooze, but that really isn’t the same as actually sleeping. This has led me to stop even trying to nap over the last few days. The frustration that comes from trying to nap is more annoying to me than the fatigue I suffer from.
At the same time as I began to have problems napping, my nights started to get shorter. During the first three-week cycle of chemo I would get eight to ten hours of sleep each night. Now, on my second three-week round of chemo, I am down to about four to five hours of sleep a night. As I check my fitbit chart I see a definite drop downwards since my latest round of chemo. For the last week my average sleep duration per day has been four hours and forty minutes.
Last night I actually got a lot of sleep compared to other nights during the week. I slept for five and a half hours. But then I had a long day of watching/filming a band competition. Plus I only had two hours and twenty minutes of sleep the night before. Since my body is supposed to be healing I’m not sure only five and a half hours of sleep should be considered a good nights sleep.
Insomnia is nothing new to me. The first time I remember experiencing insomnia was when I deployed to Bosnia almost twenty-five years ago. Since that time I have occasionally experienced lesser insomnia. Usually I would be able to link it something lifestyle related such as drinking too much pop or unhealthy eating. This time however I am unable to link the insomnia directly with any action I am taking. I think part of it may be stress related such as was the likely cause in Bosnia.
I have been trying different natural remedies to keep the insomnia at bay. So far nothing has been effective. Since it has only been a little over a week of insomnia I’m not overly worried, but I will continue to try different remedies. One possibility I’ve read about is restless leg syndrome, which I suffer from. I’ve never actually seen a doctor about my restless legs, but now I might have to. I’ve found articles linking restless legs to low iron levels, which can be made worse by cancer. And of course I am on chemo which can actually create a anemia condition in the body. But at the same time I have an iron-rich diet, which should keep iron deficiency and possibly anemia at bay. Yet I have found quite a few articles linking restless leg and anemia to insomnia for cancer patients. This upcoming week I’ll set up a doctor’s appointment to see if this is possibly what is causing my insomnia.
I’ll continue to look into possible causes for my insomnia. Insomnia is a very common complaint from cancer patients so I shouldn’t be surprised it is impacting me. Any cancer patients out there reading this post should know they are not alone! If I find a remedy or there is any change to my sleeping patterns I will share that information on this blog so it might help others.
This morning I posted a music playlist instead of a normal blog post. I did this mostly because I had to be in Groton today to watch a marching band competition thing my son was participating in. Below is the video of the Ipswich HS Marching Band. Lawson is playing the quad toms. He is three rows from the back of the formation, two in from the left (as they stand). He did great. At about 2:45 he flips his drum stick.
On a side-note it was great getting out in public even though I am technically at the point my immune system is at a low point. I was just smart and stayed away from people. For the indoor part of the event I had my mask on and sat in a corner of the bleachers. Being on chemo is not going to keep me from seeing my kids at events such as this.
I have to attend a band competition thing for my son this morning so have less time to blog today. Those who followed some of my previous blog projects may know I like to create small playlists now and then. I thought I would create my first playlist for DadAgainstCancer today. This playlist is five songs I have found on YouTube to explain the cancer experience through song.
Fights Song – Rachel Platten
Up first is a pop song that really doesn’t fall withing the realm of music I usually listen to. But it is an inspirational kind of song for fighting cancer. And more importantly it includes the lyric “wrecking balls inside my brain” throughout the song. This is exactly how my brain fog (chemo brain) feels at times.
Mission – Lupe Fiasco
This is a track I just discovered a few days ago. Rapper Lupe Fiasco created a song I should actually do a whole post about because he nails the whole cancer experience. In particular I keep the lyric “I could have died but I came out fighting” in my head since hearing this song.
Jim Croce – Time In A Bottle
Dealing with cancer means confronting the fact you are mortal and the end could come soon. This song comes to mind when I think about the possibility my time with my wife could end; which I don’t want to happen! If I could save time in a bottle I would spend every moment with my wife and kids.
Cancer – My Chemical Romance
This is a sad song and so emotional. Somehow this song actually helps keep depression away; probably because it takes depression head on. “Cause the hardest part of this… is leaving you”……
Live Like You Were Dying – Tim McGraw
This song just hits way too close to home… This one kinda brings a tear for me. Actually I almost named this blog Fumanchu as a hat tip to this song…..
Bonus Track – With A Little Help From My Friends – Joe Cocker
This isn’t really a song about cancer or the cancer experience. But it does seem to be helping me get through my cancer experience. Plus Cocker somehow took a great Beatles song and turned it into something EPIC!
Yesterday I was speaking to a friend and he asked me whether I was annoyed that breast cancer awareness gets its own month. The simple answer to this questions is no, I really don’t mind that breast cancer gets its own month. But since I am a blogger and like to ramble about anything I will provide a longer answer below.
First, I think it is great how the breast cancer awareness organizations have brought so much attention to their cause. The marketing efforts by these organizations have been insanely successful. When I see any pink item I immediately think of breast cancer. Every time I use my pink five-gallon bucket from Runnings I am reminded of breast cancer. Whenever I see someone in a pink t-shirt I think of breast cancer. I tip my pink hat to these organizations for having such a huge impact on breast cancer awareness.
Not only are these organizations raising awareness of breast cancer, they are also raising massive amounts of money to research and battle breast cancer. As someone with a type of blood cancer which is currently incurable, I have hope research will offer me a way in the future to rid myself of cancer. I was just reading about a cool new wearable device that will allow breast cancer patients to be monitored by light pulses to see the real-time effects of chemotherapy. If the trials of this device are successful it will help chemo patients with other forms of cancer. That would include those with blood cancer such as my myself. The funding for this research comes from The American Cancer Society, which of course benefits tremendously from Breast Cancer Awareness Month. Research done into any type of cancer has the potential to help all cancer patients.
I should also mention that breast cancer is not the only cancer with its own awareness month. Below is a calendar from Cancer101 website showing the different cancer awareness months and their corresponding ribbon color. My cancer type lymphoma has a lime-green ribbon and has the month of September as its awareness month (along with a LOT of other types of cancer). Personally I’m not really into these awareness ribbons, but I do see the value of them for raising awareness.
I have communicated with some cancer patients who are somewhat annoyed that breast cancer seems to get all the attention. Personally I prefer to look at how every cancer patient benefits from any attention brought to cancer awareness, even if it is a type I don’t have. Life is too short to bring identity politics into such an important issue.
My wife and I own a tax preparation and business services company. When we moved back to South Dakota from the Minneapolis area about seven years ago I left the IT field in order to help her grow that business. It has been tough at times, but I am quite proud of the business we have grown. Buying out her mothers tax preparation business helped, but really it was the payroll side of things which my wife started that grew the most. She has put a lot of time and energy into growing the business. It has grown to a point we have had to add a few full-time employees over the last couple of years. At each step of the way I have been there to encourage my wife and support her.
About a year ago this started to change. Our youngest son started having muscle problems and on some days is unable to walk. This has meant him staying home from school a day or two each week. To accommodate this I moved my office to our house during tax season. The main function I perform at the tax office is to review returns. Since all documents are scanned into the computer it is actually quite easy for me to do my work from home. Even though I worked from home I still had a physical office at our office building. I would ensure every week I spent a day or two at the office. This was mostly so I could be close to my wife and support her.
When summer came about my breathing problems became worse. Between my breathing problems and taking the little boys to baseball practice/games I can probably count on one hand how many times I actually made it into the office this summer. Now that I am on chemo I don’t go to the office at all, at least not during business hours. There are too many people who come in the office with the sniffles or who knows what germs. I just can’t risk getting sick. Plus I will be on chemo until February or so, well into tax season. I definitely can’t be in such a confined place with people coming and going.
At the same time the business continues to grow. We just added another full-time employee and we are running out of space for people at the office. That led to the decision to clean out my office. This was NOT a decision made by my wife. In fact she tried to talk me out of it. I didn’t realize it but my having an office there has been a form of emotional support for her. Even if I wasn’t there physically she felt as if I was there in spirit through my office. When I told her I was cleaning my office out she felt as if I was abandoning her. The logical side of my wife agreed it was something that needed to be done. But that doesn’t make it any easier.
On Sunday as I placed the last box in my pickup I made a comment to my wife that she had gotten rid of me now. I meant it as a lighthearted joke. Her face instantly dropped. My cancer diagnosis has been tough on her and this was just one more thing cancer was taking away. Logically she understood why I had to clean my office out. But my moving out of the office is just one more thing that my cancer diagnosis has taken away from us.
I’ll end this post here. Something so simple as cleaning out an office may not seem like an emotional topic. But it really is. A cancer diagnosis takes so many things away from patients and their families. This move away from the office was a physical reminder of that reality.
PS. Hopefully today’s post made sense. I have a lot of “brain fog”, aka chemo brain, going on today.
When talking to people I am often asked why I didn’t get a second opinion about by cancer treatment. Many cancer patients in the area go to the Mayo Clinic in Rochester and believe I should have done so as well. In this post I will explore why I chose not to get a second opinion at Mayo, at least not yet.
Time is the main reason I chose not to get a second opinion. Early on in this blog I shared some of the breathing problems I had leading up to my diagnosis. At the time it appeared I might have some sort of lung disorder. When a large lymph node appeared on my neck it allowed my diagnosis to change towards a type of cancer. When I was able to view the results of a CT scan it was quite clear that a lymph node was obstructing my windpipe. Each day my breathing got worse. By the time I had a surgery to install a chemo port I was happy to be put under just so I could get relief from my breathing problems. My oncologist believed that chemo would reduce the size of the lymph nodes and allow me to breathe once again. I am happy to say she was correct. Had I waited any longer to receive chemo treatment I am not sure I could have physically or emotionally endured those breathing problems any longer. Even delaying treatment for a few days to get a second opinion may have been too much for me to endure at that time.
Another reason I chose not to get a second opinion is that I decided I liked the local oncologist. Prior to seeing the PET scan my wife and I spent some time getting to know the oncologist. At the end of that meeting there was some trust established. The fact the oncologist was part of a larger team out of Sioux Falls also helped to enhance that trust. Each case, including mine, was reviewed by a team of oncologists. No doctor is perfect, and it is reassuring to know multiple sets of eyes would be reviewing my case as time went on. Plus there is the fact my oncologist is also a hematologist. I am diagnosed with grade 2 follicular lymphoma, which is a type of blood cancer. Everything I’ve researched on the topic said it is important for me to have an oncologists that also happens to be a hematologist. If I had a different type of cancer it is quite likely I would have gone to Mayo for a second opinion.
I would say the last major reason I haven’t chosen to get a second opinion at this time is a wish to be treated locally. It is only about a twenty-minute drive to the hospital from where I live. Chemo wears the body out and it is nice to get home where I can lay in my own bed right away after my treatments. There is a healing power of being in ones own home. It is true I could have gotten a second opinion and still be treated locally. But I really didn’t want to put the stress of additional travel on my wife. She has had her life turned upside down just as badly as me by the cancer diagnosis. Adding trips to the middle of Minnesota would have increased the stress on her.
After getting through my treatments hopefully the cancer spread throughout my body will be pushed into remission. At some point during remission it is likely the cancer will come back in full strength. I quite possibly will get a second opinion when that occurs. Hopefully time won’t be such a large factor at that time. But even if I do get a second opinion I would like to keep my local oncologist and do my treatments locally. We will see what the future holds.
I love being a dad. That is one of the main reasons I call this blog Dad Against Cancer. I want to defeat this cancer in part so I can continue to spend time with my sons. In this post I will share a few ways my cancer experience has impacted my two youngest sons.
I should note I have three sons. My oldest son Dustin recently turned 21 and is off to college. I will handle the impact of my cancer on him in a future post.
My two younger sons are Lawson, age 13, and Ashton, age 11. Before going on I should note what kind of dad I have been up to this point. When the boys were young I really didn’t spend a lot of time with them. I was working in the IT field and worked long hours which included a lot of traveled. The worse was probably when we lived in the Minneapolis area and I was doing consulting. On a typical day I would leave for a job before the boys woke up and would arrive home late into the evening. I would then spend time working on homework to complete my degree and go to bed. Even when I got a job as a Network Engineer instead of consulting I would work massive hours and was always working from home in the evenings when I wasn’t focused on school. I wasn’t necessarily a bad dad, I was just focused on trying to make life better for the boys and definitely didn’t spend as much time with them as I would have liked.
About seven years ago we moved back to South Dakota. It was then I left the IT field and focused on growing my wife’s business. I also slowed down my lifestyle to spend more time with the boys. I volunteered to be a coach in sports such as soccer. During the summer I would take the boys to all of their summer rec sports. It was also during this time-period I started to blog about politics. The boys would travel all over with me to cover political events. My boys can not only tell you who many of our elected politicians are in South Dakota, but where they met them. As the years went on I spent more and more time with them.
Fast forward to a year ago. Ashton started to have a problem where his muscles would not work properly and on some days could not get out of bed. It was at that time I started to work from home completely. During the last year I have spent a lot of time driving him to St Paul to get tested for various muscular and neurological disorders. At the same time Lawson would get jealous of the time I spent with Ashton, so I would make sure I found ways to make it to his basketball games or encourage his love of playing the drums and guitar. I was really starting to be the dad I always wanted to be.
When this summer came about my health really started to falter. My breathing problems were getting quite bad, but I tried to hide it from everyone. I especially tried to hide it from the boys, although I know they knew something was wrong. This previous summer I was able to travel all over with the boys as they traveled for baseball. Ashton played Midgets baseball and Lawson fell at the age where he could play both Midgets baseball and Teeners baseball. It was a great summer! I went with them to every baseball practice and game that I could. I think I only missed two practices and one game for each kid.
The summer was not all roses however. Traveling to all of these practices and games took its toll on me. As my breathing continued to degrade I would spend more time at home sitting at the computer. It wasn’t that I wanted to sit at the computer. I simply didn’t have the energy to do anything else. Plus the pain I was feeling only felt better if I was sitting in a forward-leaning position. My youngest boys knew something was wrong. I can think of multiple times during the month of August, after baseball was done, when the boys would ask if I was OK and if I had to go to the hospital. I always played it off as me just being old and tired and would make a joke. As time went on they weren’t laughing at as many jokes. They knew something was wrong, even if I wouldn’t admit it to them.
On August 27 the doctor called to let me know I had cancer. My wife and I sat the boys down and let them know I had cancer and tried to explain it to them somewhat. A website I found had some tips for giving the news to kids. I’m not sure they understood yet what we were telling them.
September 11 is when I began my first round of chemo. Prior to chemo my wife and I discussed some changes with the boys that would have to happen around the house. The whole house had to be cleaned, everyone would have to take new steps to keep germs away from me, nobody could use my bathroom in the few days following chemo, and the boys would have to stay away from me if they were sick. There were other changes as well, but I think this gives the idea that the boys were majorly impacted by my going on chemo. They stepped up well. Both boys helped to clean and sanitize the house. When the boys get in the house from school or come upstairs from the lower level they immediately sanitize their hands. Just this week both boys had a stomach virus and Ashton had strep. Both boys stayed away from for days to ensure I wouldn’t get sick. I’ve been so proud of how they have handled themselves.
But it should also be noted they have told both my wife and myself some things which trouble them. Part of cancer or chemo causes something called “chemo brain”. My thoughts will sometime fog up and I find myself forgetting a lot of things. This is quite frustrating and I will sometimes just snap at the wife or boys for no reason. I have also had the same conversations with the wife and boys multiple times without remembering the previous conversations. This has left the boys quite confused and they have let my wife know about their confusion. Due to this brain fog the boys have become reluctant to ask me anything. They can’t know for sure if I will remember what is said or they will wonder if I will snap for no reason. It really is putting a strain on the dad-son relationship. I have also noticed they will sometimes just look at me with a worried look.
The boys know how to google things. And I know at least one of them has googled the heck out of cancer. Of course most of the things that come up on a google search about cancer are bad. I am quite sure the boys have read a lot of bad things about cancer prognosis. I won’t forget one of my sons asking if I was going to die after he had gotten done reading something on the internet. He wasn’t crying, but you could tell he wanted to. I just hugged him and said I would do everything to fight the cancer so I could continue to watch him and his brothers grow. He said he would do anything he could to help keep me around. I didn’t cry at the time. But now as I write this and remember the moment I have tears running down my face… Perhaps this is a good place to stop blogging for today.
My boys have definitly been impacted by my cancer diagnosis. As I continue to fight against my cancer I hope to find ways to overcome some of the negative impacts. Maybe this post will help give others insight into a few ways the relationship between a parent and kids can be impacted by a cancer diagnosis. No matter what I plan to keep fighting against my cancer and be there for my boys as long as I can!