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.
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.
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
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…..
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
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.
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.
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.
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.
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.
Today I had my first round of maintenance therapy with Rituximab. This is the first of many infusions over the next two years; I will have these Rituxin infusions every eight weeks. Earlier this week I blogged about my reasoning for doing maintenance. For today’s post I thought I would share my maintenance day experience. Many of us going into maintenance for the first time wonder what it will be like and I hope sharing my experience will help others.
Pretreatment blood draw and vitals check
This visit began just the same as my chemo appointments. First I had to get a few vials of blood drawn. Actually the nurse assigned to me today is new to oncology floor, so she put in an order for the lab to come draw blood from my arm. I didn’t say anything. But as soon as the lab tech came into my room another nurse came in and said “Ken, you know better. We use your port.” So then the newer nurse got her first opportunity to insert the IV line into the port on my chest. She actually did really good. The port on my chest sticks way out, making it easy to see the three dots marking where the needle gets inserted. Most important, she stuck the needle in fast so it wouldn’t hurt, just a slight sting which I’ve gotten used to from doing chemo.
Once the port line was installed she couldn’t get a blood return right away. Oh no, I thought, my retracted port is back. My port seemed to work good for blood draws during my biopsy, so I thought any port issues were a thing of the past. Luckily after a couple of flushes the port was allowing blood to flow back into the syringe. The nurse was then able to fill all three blood vials with no problems.
Then, just as during chemo, my vitals were all checked. The only vital kinda off was my temperature. I was running a temp just over 99 degrees. I have a sick kid at home right now and it makes me wonder if I might get what he has; oh goody! My blood pressure was a little bit high for me at 122/80. I guess I was nervous about maintenance therapy.
After the blood tests were complete the CNP came in for a short visit. She let me know all my blood counts looked good. The only number that was very high was my glucose. I’ve been trying very hard to cut down on sugar. But it is hard! I’ll just have to try harder! It is especially true I need to cut out the sugars because I need to lose the weight I gained while on chemo. Steroids and I don’t mix well!
The CNP also passed on some good news from my oncologist. After looking at the bone marrow biopsy results she determined I wouldn’t need to do the bone marrow rebuilding medicine called Xgeva anymore. I am really glad to be done with that shot. I one time forgot to take Claritin when getting an Xgeva injection and it hurt so bad I thought I would need an ER visit. That is a good tip for anyone taking Xgeva or Neulasta shots: Claritin works!
The pretreatment drugs
Just as when I had chemo, I had to take certain drugs before I could actually get my Rituxmab infusion. First I had to take two Tylenol caplets. As I was taking my Tylenol something occurred to me: I hadn’t taken more than a few Tylenol or Ibuprofen for over a month! The pain I would experience over the last year seemed to have subsided down to almost nothing! I had gotten very used to pain over the last year, but somehow I missed out on the fact it was nearly gone.
Then I had the saline IV bag hooked up. That stays hooked up the whole time when receiving IV drugs. After the saline drip was started I was given a small bag of steroids. It took about twenty minutes for the steroid bag I believe. Part of me hoped I wouldn’t have to need steroids anymore. I know from past experience that steroids make me very hungry and moody.
Finally I had a shot of Benadryl injected into my IV line. During one of my chemo visits a nurse told me I only have a half does of Benadryl. I can’t imagine having a full dose. That half dose almost knocks me out instantly and I’m in a blur for the rest of the visit.
From the research I’ve done on chemo and maintenance treatment the trifecta use of Tylenol, steroids, and Benadryl will prevent most of the side-effects of Rituximab for most patients. Luckily that seems to be the case for me. If I would have started to show side effects the nurse let me know they would likely have increased the Benadryl dosage.
The actual Rituximab infusion
Honestly I don’t remember much of the infusion experience. Like I said above the Benadryl seems to put me in a daze. The actual infusion took 90 minutes. The nurses did a slower drip for the first half an hour to ensure I wouldn’t experience any nasty side-effects. Then it was put out much quicker for the last hour. One of the nurses confirmed I was getting the 1,000 mg bag of Rituxin; which is the same as I had during chemo.
The only real side-effect I experienced was a drop in blood pressure. This was the same thing that happened to me during chemo. I can’t remember what my last reading was, but I know my bottom number was 50. If that is the worse side-effect I’ll have from Rituximab I can live with that.
After maintenance I took a nap
Today my brother-in-law was gracious enough to be my driver (the wife and I work in a tax office, bad time of year for things like this). On the way home I was still in a Benadryl daze. I ate my lunch and planned to take a short nap. Four hours later I woke up and barely had time to get my middle child picked up from basketball practice. Luckily that nap had completely gotten rid of the daze. It just happened to be a bigger nap than I had planned on.
Maintenance was really kind of a non-event
Even though this post ended up being over 1000 words long, I can’t really say much actually happened during my maintenance treatment. In this post I basically shared the whole experience. Hopefully seeing how much of a non-experience maintenance was for me will help others going into maintenance treatment. Going into these situations for the first time can be stressful and learning how it goes for others can help.
Today’s Song: Carry on my Wayward Son
I had a surprise visit from my oldest Son visit today while receiving my Rituxin infusion. He happens to work in the kitchen at the hospital. It was truly great having him come by and say hello. As I think about him this classic song from Kansas comes to mind. As he is growing into quite the good young man I see him experiencing the same bouts of confusion and self-doubt we all went through at that age. He doesn’t realize how good of a person he is really is. This song explains that well:
Bonus Song: Dustin the Wind
This is one of those inside jokes for us. When Dustin was a kid he used to think Dust In the Wind was actually Dustin the Wind and ask me stop calling him the wind when I would sing it. This is a great live/unplugged version of the song.
Later this week I start my first round of maintenance therapy treatments. Choosing whether to actually do maintenance infusions was tough for me. I’ve spoken with other lymphoma cancer patients who also struggled with whether to do maintenance infusions. In this post I will briefly write about what maintenance is and why I am choosing to do maintenance.
Maintenance therapy is sometimes given after initial treatment has put the lymphoma into remission (no evidence of disease). It is used to make the remission last as long as possible by suppressing any lymphoma cells that can’t be detected by scans after the main treatment has finished.
Chemotherapy is sometimes used as maintenance therapy; however, immunotherapy (treatment with antibodies) is the most common type of maintenance therapy for people with lymphoma.
In my research I’ve found many studies that show maintenance therapy does extend remission for a good number of people. One things maintenance therapy does not do however is extend the expected lifespan of lymphoma patients. Basically maintenance therapy extends the time between the bigger treatment options, such as chemotherapy.
Rituximab is the maintenance therapy drug I’ll be using
Currently Rituximab is the standard drug used for maintenance therapy. This drug is a type of immunotherapy, which means it uses antibodies for treatment. In particular Rituximab is a monoclonal antibody. When writing about my chemo regiment R-CHOP I included this explanation of monoclonal antibodies from cancer research UK:
Monoclonal antibodies target proteins on the surface of cells. Rituximab targets a protein known as CD20. CD20 is found on white blood cells called B cells. It is the B cells that are cancerous in the most common type of non-Hodgkin lymphoma.
Rituximab attaches itself to the B cells and marks them. The cells of the immune system recognize the marked cells and kill them.
I still think it is a very cool concept that a persons own immune system can be used to target cancer cells. Technically this is already supposed to happen, but sometimes the immune system just doesn’t attack cancer like it is designed to. Theoretically maintenance therapy will keep the lymphoma at bay if it begins to spread again.
My particular maintenance plan is to have an infusion every eight weeks for the next two years. That is a lot of sessions. Good thing I have my port!
Maintenance therapy sounds like a good thing, but it has a downside
The concept of maintenance therapy sounds like something every lymphoma patient would want to go through. Being able to push another round of chemotherapy farther into the future is a good thing. But maintenance therapy does have its downsides as well. Actually some countries don’t even offer maintenance therapy due to these downsides and the fact it isn’t proven effective for enough people.
bloating or swelling of the face, arms, hands, lower legs, or feet
blood in the urine or stools
body aches or pain
burning or stinging of the skin
difficulty with breathing
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
flushed, dry skin
fruit-like breath odor
hives or welts, itching, rash
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or genitals
lower back or side pain
pain or tenderness around the eyes and cheekbones
painful cold sores or blisters on the lips, nose, eyes, or genitals
painful or difficult urination
pinpoint red spots on the skin
pounding in the ears
slow or fast heartbeat
sores, ulcers, or white spots in the mouth or on the lips
stuffy or runny nose
swelling of the tongue or throat
tightness of the chest
tingling of the hands or feet
troubled breathing with exertion
unusual bleeding or bruising
unusual tiredness or weakness
unusual weight gain or loss
For anyone curious, that was was 52 common side-effects listed. That doesn’t even include the less common side-effects or other possible side-effects which have yet to actually be linked to rituxumab.
I noted above Rituximab was part of my chemo treatment, being the R part of R-CHOP. My very first round of chemo infusion had to be split into two days. The main reason for doing so was because Rituximab had to be injected very slowly the first time to see if I would react badly to the drug. I’ve heard stories from many lymphoma patients that will experience major side-effects such as their throat closing or major nausea. Before even taking Rituximab a dose of Benadryl is given to the patient, and even that is not enough to hold off side-effects for many people.
At the same time I’ve the stories of many patients on maintenance who have developed long-term health issues because of these infusions. The tiredness and beat-down feeling that comes from chemo seems to be extended by many people taking maintenance therapy. Some patients going through maintenance therapy will get sick constantly and appear to have compromised immune systems. I was actually just speaking with someone that had to stop maintenance therapy after two sessions due to their inability to work anymore. Maintenance therapy is not chemo, but it can be just as damaging to the body for many lymphoma patients.
There are other maintenance therapy drugs out there now. Plus, more are currently being developed. So far I haven’t ready about any without major side-effects. It seems to be a matter of finding the maintenance drug with the least side-effects for a particular person.
So why am I doing maintenance
After going through some of the downsides to maintenance therapy it would seem that nobody would willingly choose to go this route. But just like anything in life it is important to weigh the positives and negatives. I won’t go any further into the negatives, since I think the above paragraphs covered some of those well enough. Instead now I would like to focus on the positives.
First, maintenance therapy does help many patients go longer without treatments such as chemo. It is true that not all patients get a longer remission. But enough patients do that I feel it is worth the risk. If maintenance therapy is able to push my next treatment years into the future I find it worth it. By that time it’s possible a cure could be found for lymphoma. Or even if a cure is not found there may be newer and less invasive treatment options available. There have been a lot of advances in the diagnosis and treatment of lymphoma over the last twenty years. I would expect the next twenty years to see advances we can’t even conceive of at this time.
Second, not all patients on maintenance experience major long-term side-effects. Yes, Rituximab is a nasty drug with some very bad side-effects. But not all patients have the same experience. If I find that I am starting to experience some of the side-effects I’ve read about or heard from other lymphoma patients I will simply end maintenance treatments. Once maintenance treatments begin there is nothing that forces anyone to continue maintenance therapy in the future. This is one area of healthcare where we the patients can actually have some control over our treatment.
Finally, the main reason I am choosing to do maintenance therapy is because of my family. I want to be around to help my kids grow. I want to be there for Ashton as he is going through diagnosis for his health issues. I want to go to Lawson’s baseball games and support him as he takes a continued interest in music and starting a rock band. I want to watch Dustin grow as a young man and smile as he makes the same mistakes we all made as young adults. I want to be there with Mindy experiencing this all together. I took a vow that included “until death do us part” and I plan to make that as far off in the future as possible.
Actually when I first mentioned I was questioning whether to have maintenance Mindy gave me “the look” and the looked like she was going to cry. She acted as if I just said I was wondering whether to keep living. That isn’t what I said or meant. But she seemed shocked and almost angry with me because I wasn’t sure if I wanted to do maintenance therapy. That look had a lot to do with my decision to go ahead with maintenance. If there is anything at all I can do to possibly extend time in remission I will do so. Mindy is truly my soulmate and I want to ensure we have as much time together as possible.
Wednesday is the day
This Wednesday is the day scheduled for my first maintenance therapy. I will admit to having a little bit of nervousness about receiving this infusion. But since I made it through R-CHOP mostly OK (I am still very tired and weak two months later) I feel that Rituximab infusions should go OK. I just keep focusing on the fact I am doing this to hopefully extend quality time with my family.
Today’s song – Just Fishin’
Being around for my family is a big reason I am choosing to do maintenance. I think the song Just Fishin’ sums up part of my reasoning very well. This song from Trace Adkins really shows what is important: spending time with family and creating great memories.
Bonus song – Cats in the cradle
The bonus song is one I’m sure everyone knows. Part of the reason I want to do maintenance is so I can do things like play catch with my boys. I look forward to the day when I sit back and think “he’d grown up just like me, my boy was just like me”.
Sometimes cancer patients experience problems such as peripheral neuropathy as a result of treatment; or even as a result of the cancer itself. Such patients may need to have an EMG performed to diagnose the nephropathy. Earlier this week I had to take my son Ashton to the hospital in Sioux Falls in order to have an EMG performed. Fortunately Ashton does not have cancer and instead is being diagnosed for some sort of hypermobility. But since the EMG test performed on him is the same thing that would be done for cancer patients I thought it would be worthy to do a post about his EMG experience.
Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.
I was warned by the oncology nursing staff that chemo could actually cause peripheral neuropathy. When looking at the Mayo page about peripheral neuropathy I noticed one interesting possible cause which specifically mentions lymphoma:
Bone marrow disorders. These include abnormal protein in the blood (monoclonal gammopathies), a form of bone cancer (osteosclerotic myeloma), lymphoma and amyloidosis.
Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.
In the next two sections I will share Ashton’s experience with two different parts of an EMG test.
Getting shocked – the nerve conduction study
The first part of the EMG test Ashton went through was the nerve conduction study. Ashton had both arms and legs tested in this part of the study. It began with one of his arms. The tech hooked up electrode stickers to his hand, and then various places on his arm. An electric shock was sent through his arm.
Ashton was very nervous about this part of the test. The tech reassured him it was very little electricity, and it would start low and only increase in amplitude as necessary. To show Ashton it was OK, the tech used the probe on himself. I’m not really sure that made Ashton feel better.
I’m not sure how many pathways the tech tested on each limb, but it seemed to be quite a few. Ashton didn’t seem to mind most of the shocks. The only ones on his arm he said hurt occurred when the tech did the funny bone and the wrist. On his legs Ashton only complained about the shock right at his ankles. Other than those few areas, Ashton admitted the test wasn’t so bad.
Getting poked – the needle EMG
Ashton was even more noticeably nervous about the second EMG test. In the needle EMG the doctor used a needle to poke into Ashton’s muscle. The doctor would then measure the electrical activity of that muscle. Ashton was shown a needle to ensure him that it was not big and won’t leave a big hole. The needle itself looks similar to one used in acupuncture. This test apparently records how active a muscle is.
Luckily only one arm and one leg needed to be tested. I’m not sure how many pokes the doctor did, but I bet if I asked Ashton he could tell me. Ashton said he definitely felt the needle go into his muscle. When the doctor had to move the needle around in the muscle Ashton complained it was very sharp. During this part of the test Ashton had to either relax muscles or move joints according to what the doctor wanted. While this test was shorter than the first, Ashton said it seemed to take much longer.
There was only one point where I think the pain was more than Ashton was ready for. That was in Ashton’s calf and he asked if the doctor could hurry. There was also a little bit of blood coming out of the hole in the calf. None of the other punctures left any sign of a needle being used. At the end Ashton said he would prefer not to do that test ever again.
I don’t have his official results in front of me. But I do know what the doctor said. In the first EMG test Ashton had electricity ran through his nerves. According to the doctor this part of the test went very well and there is no sign of problems with the nerve pathways tested. This was really good news, since the tingling and numbness Ashton often feels in his hands and feet are not a result of these nerves having issues.
Ashton also did well in the second part of the test. Since the doctor couldn’t find any muscle issues in the arm or leg tested, he decided it was not necessary to test the other arm or leg. This was not surprising. When being treated by doctors it has always been noted that his muscles seem to be strong, and that something else such as ligaments were likely his problem.
On one hand it is good that no problems were found in either EMG test. The results further confirm his hypermobility and pain issues are likely caused in the joints. But at the same time we still don’t have any real answers as to why he has such extreme pain and numbness. His latest round of genetic testing should be done soon. Hopefully those results will give some answers.
Even though Ashton does not have cancer I thought his experience would be worth sharing on this blog. Many cancer patients experience peripheral neuropathy and may have to go through an EMG test. Despite Ashton experiencing some very short-term pain, it was well worth getting the test done. In his case the EMG was done to rule out certain conditions. With cancer patients it is more likely the EMG would be done to confirm and come up with a treatment plan for conditions such as peripheral neuropathy.
Today’s Song – Hurt
After seeing Ashton go through pain I couldn’t help but think of the classic Nine Inch Nails song Hurt. Technically the song is more about regret. But I thought the Johnny Cash cover of the song was well worth sharing in this post.
Bonus song – I won’t back down
Johnny Cash did some great covers in his American Recording series. One of my personal favorites happens to be Cash’s cover of Tom Petty’s song I Won’t Back Down. Ashton also happens to know and like this song because it was featured in the movie Barnyard.
This previous weekend a benefit was held to help my family out. With three family members dealing with medical issues all at once we have become financially overwhelmed. I am happy to say the benefit was a success. In this post (which I will try to keep short), I will share part of my experience of the benefit and try to express the thankfulness I feel.
Nerves were shot prior to the benefit
Prior to the benefit my nerves were shot. I am used to being the person that helps other people. It is a new experience for me to rely on the good hearts of others. I kept wondering if anyone would even show up. I kept wondering if people would think that because we own a business that we really didn’t need help. I kept wondering if maybe we weren’t deserving of help since there are other families out there in need of help. All of these thoughts, and more, kept running through my head.
Of course it didn’t help that on the day of benefit I was having a one of my rough days. I am sleeping very poorly and my energy levels on certain days are very low. In order to make it through that day I ended up taking energy drinks. I don’t really like drinking those. But before the benefit I had to drive an hour to watch my middle son in a basketball tournament. Actually going to the tournament probably calmed my nerves down more than anything. The boys played three great games. But as soon as the tournament was done I was back to being on the edge of what almost felt like a nervous breakdown.
On a side-note I want to mention that the coach brought some of the players to the benefit. This was such a pleasant surprise. It really brightened up Lawson’s evening, and mine.
The benefit itself went really well. I was told there were about two hundred and sixty people in attendance. It was all very overwhelming. I spent the whole time trying to go from person to person and thank them for coming. I didn’t make it to everyone, which I regret. Many times I repeated how we were all doing. In particular I had to constantly try to help people understand what is wrong with our youngest son Ashton. He has some sort of hypermobility, which he is still going through the diagnosis process. It is hard for people to grasp a condition which places Ashton in a wheelchair on certain days, and he appears to fine on other days.
At one point I had the microphone in order to introduce my family to the crowd and say thank-you. This was one of the hardest things I’ve ever tried to do. I had become so emotionally overwhelmed with the outpouring of love and support for my family that I was having a hard time speaking. When I tried to say thank-you I kept having tears form and found myself unable to get coherent words out. More than anything this benefit has helped me to understand there are still good people in the world.
How to show my grattitude
Another big worry of mine has been trying to figure out how to show my gratitude. We are working on thank-you cards and an ad in the local paper to thank people. But that seems so insufficient for the amount of support shown to my family. At the benefit I was speaking to a person I know a little bit. She is technically a client of my wife’s and I’ve met her a couple times over the years. She gave the answer I had been looking for as to how to best thank the community. Here is an approximation of what I remember her saying:
Ken, I’ve seen you and Mindy give to the community in many ways over the years. I know you guys have helped other families out. When you guys are back on your feet just continue to do so. That is all the thanks I need.
At the time I was still so overwhelmed from being at the benefit that I didn’t give it a lot of thought. But since then I have thought about it a lot. I agree. The best way for my family to give thanks is to continue helping others. This financial hump is hopefully a short-term condition. As we realign our finances and hopefully get back on firmer financial ground it will be possible to once again help others out. I can’t think of any better thank-you than to “pay it forward” when we are able to do so.
Time to end this post before I ramble too much
Really all I wanted to do in this post was to say thank-you to family, friends, and the community for the overwhelming support they have shown my family. I can’t find the words to properly show my gratitude. Instead I will continue to help others when we are back on our feet and try to live by a pay-it-forward lifestyle.
Today’s song – What a Wonderful World
Today’s song comes from the Great Satchmo, Louis Armstrong. I don’t think this song really needs an introduction. The song is so filled with hope and love that I feel it is appropriate for this post.
Bonus Song – Thank you
Doing a post about being thankful brought this great Led Zeppelin song to mind. This song is actually a love song and it sums up how much I love my wife and am very thankful to have her.
Earlier this week I posted about the financial burden of cancer. I posted part of my financial burden story so other cancer patients could understand they are not alone. Since that time I have received many messages from cancer patients asking if I knew how they could get financial help. In this post I will briefly mention just a few ways to get some financial assistance. This list is not even close to exhaustive, and I will probably blog on other ways in the future as I discover them.
A lot of cancer patients I’ve spoken with have mentioned that the initial diagnosis and treatment is what really hits them the hardest; financially speaking that is. It is during this period that many cancer patients are unable to work full-time, have medical bills piling up, and tend to get behind on other bills. For some of these people fundraisers were the best way to get past this burden.
I won’t write too much about fundraisers. In the future I plan to do a bigger post about how to do successful fundraising. But from what I’ve learned it is very important to have some sort of third party to truly get a fundraiser to work. That may be good family, friends, coworkers, churches, or local charity organizations. Without help from others I’ve been told fundraisers tend to fizzle.
Voluntary and nonprofit organizations
For many people fundraising is not an option. But there are many organizations out there to help cancer patients financially. I would suggest anyone looking for financial assistance to do a web search including the name of their particular cancer along with the words “financial assistance”. There are an amazing number of organizations out there trying to reach out to cancer patients with information, support groups, and financial support.
My particular flavor of cancer is non-Hodgkin’s follicular lymphoma. When I searched “non-Hodgkin’s follicular lymphoma financial assistance” I found an organization called the Leukemia & Lymphoma Society (LLS). LLS is a great resource for those of us dealing with blood cancers. One small part of what LLS does is provide financial support to those in need. There are quite a number of programs available through the LLS. These programs include (but are not limited to) a co-pay assistance program, a $100 stipend for those being actively treated, a patient travel assistance program (which is currently fully subscribed), and a $500 stipend for urgent needs. Not all of these programs are available for everyone. But even it they are not available it is worth searching out similar organization on the web. The time put into searching for financial assistance can be well worth it.
Another resource is the Cancer Financial Assistance Coalition (CFAC). CFAC can help when searching for financial support. At this site you can search for organizations providing financial assistance in the United States. The search takes your location and diagnosis, then it lists organizations which provide financial assistance meeting your criteria. I’ve noticed LLS actually comes up as one of the organizations when I search my diagnosis. Going to this site may be well worth time for cancer patients in need of financial assistance.
Organizations outside of the United States
The organizations I spoke about above were focused on cancer patients in the United States. Through online support groups I’ve heard many other countries have organizations specific to them. An easy way to find some of these organizations is to search your type of cancer with “financial assistance” and your country. Here are a few examples using the countries of people I know who read this blog:
Canada: Lymphoma Canada – This organization has some good resources to assist with prescription drug coverage.
England: Macmillan Cancer Support – This organization has some good financial support resources. I’ve noticed they also include a support line to connect with a financial guide to figure out finance options available.
Australia: Cancer Council – This organization can put people in Australia in touch with local organization to provide financial counseling. I’ve also noticed they can assist with transportation for those going through cancer treatments.
The above list is only a small sample of what I was able to find online. I think the important thing to remember is that there are organisations out there that can help! These organizations are also in need of volunteer or donations for anyone looking to help out.
Financial Lifestyle Changes
Even though I am mentioning this last, making some lifestyle financial adjustments is probably the most important step to take when being financially burdened with life-changing conditions such as cancer. Most of us going through cancer end up making changes in how we live from a health perspective. This is good, and many of us probably should have made some of these changes sooner. But I have found it is just as important to make financial lifestyle changes.
Someone I respect a lot mentioned she has to budget each year with the plan that all out of pocket maximum will be used. I think this is great advice. At first I thought “well, we already planned on doing that”. That is kinda true, and kinda not true. We had planned on budgeting this into our personal finances, but we haven’t actually sat down and determined how much that will be. It is quite likely as a family we will have to stop spending money on other areas of our life in order to accomplish this. My family had already started down the path of re-prioritizing our finances a couple of years ago, but now it is time to actually come up with our plan. More importantly we need to stick with that plan. Some of the changes we have made or plan to make include:
Going camping. This is a great way to vacation on a budget.
Eating out less often. We have already dramatically reduced the amount of money we spend by eating out less often. I believe if we work even harder we can reduce our food costs even further.
Buying less stuff. In the modern world there is so much stuff that can be bought. A lot of this stuff simply isn’t used. I’m trying become that grumpy old dad that by default says no to buying anything new unless a good reason is given to do so.
Cutting down on non-essential entertainment. For Cable TV we cut that down to just the basic package. We do still have Cable, mostly so we can view the local news and weather. At the same time we have cut going to the movies down to a rarity. To make up for this we watch movies on Netflix or Amazon Prime. That move alone has saved us hundreds of dollars per year. Another change has been to stop traveling to large concerts and instead going to local smaller concerts. I spend a fraction of the money going to smaller events, and still have a good time doing so. Cutting down entertainment expenses doesn’t mean getting rid of entertainment.
There are other changes we have made or plan to make. But I think the above items give an idea of what those of us with a chronic condition have to consider. Yes cancer sucks! Yes we have to make changes because of cancer! But that doesn’t mean we still can’t live life to its fullest. It just means we might have to make some adjustments; especially on the financial side.
I’ve rambled long enough
I see that I’ve already written well over a thousand words, a bit of a no-no according some blog experts. Really all I wanted to say in this post is that for anyone suffering financial hardships due to cancer that there are ways to get some relief. This can be through fundraisers or by getting help from voluntary and nonprofit organizations. At the same time it is important for those of us suffering a chronic condition (such as lymphoma) to understand that certain financial lifestyle changes are also necessary. In the future I hope to do posts highlighting other financial options available to cancer patients.
Today’s Song – With a little help from my friends!
I’ve shared the song With a Little Help From My Friends on this site a few times. Usually I prefer the great cover by Joe Cocker as opposed the original Beatles version (which is also great). Today I thought I would share a version performed by Paul McCartney and Ringo Star about a decade ago.
This is actually more of a love song. But writing about financial matters brought this Barenaked Ladies recording to mind.