Low blood pressure during chemo

22376520Today I had my third round of chemo. By this point I don’t even fret about chemo days anymore. One of the first drugs they shoot me up with is Benadryl, which knocks me out for the next few hours. The only chemo day side-effect which is somewhat troubling is my blood pressure getting low.

My blood pressure was 130/68 at the begging of this mornings appointment. As each IV bag was given to me the blood pressure would be checked. After taking the first IV R CHOP drug (I believe it was the rituximab) my blood pressure dropped. It dropped even further after the other three chemo drugs. At the end  of chemo my blood pressure was 99/52. My bottom number technically fell into low blood range since it is under 60. The nurse was concerned about this. But my blood pressure did this the last two rounds of chemo as well. I’ll just take it easy for the next couple of days for my body to recover from the chemo drugs.

In researching R CHOP blood pressure problems I’ve noticed this is a somewhat common side-effect. My advice to others on chemo is to not be overly worried about blood pressure drops as long as the nurse is continuing to monitor the decline. But just like anything if the low blood pressure continues after going home I would definitely call the doctor! The low blood pressure may not be an immediate concern, but it could turn into a very bad situation if allowed to get out of control.

Working while on chemo

Desktop of the businessman.One of the most common questions I get from people is whether I am able to work while going through chemo. I do work, but it is greatly diminished from what I was once capable of. In this post I will briefly blog about my current work experience while going through chemo.

The type of chemo I am going through is called R CHOP. It is a very aggressive type of chemo and is very hard on the body (but then I have yet to hear of a non-aggressive type of chemo). I have chemo once every three weeks. On the day of chemo and the two days following I am basically unable to work at all. Fatigue hits heavy on these days and I sleep most of my day away. Actually I look forward to these days now, because I know for at least a few days I won’t suffer from insomnia. At the same time though it means on these days I cannot work.

Earlier this year I had already started to work from home most days. This was not done because of my cancer. Instead I started to work from home three to four days a week in order to take care of my youngest son. By summer I was rarely able to make it to the office even once a week due to breathing problems. When I started chemo it was time to face the fact I should not be in the office at all. There are too many customers who come into the office sick. With my weakened immune system it just doesn’t seem worth the risk to come into the office when I have the option to work from home. The biggest downside to working completely from home is that it feels like I’ve abandoned my wife to run the office by herself. Actually, cleaning out my office was one of the hardest things I’ve done since being diagnosed with cancer.

Working from home may allow me to keep away from germs. But it doesn’t mean I get a lot done on the typical day. The brain fog I suffer from seems to get worse every day. On some days I can only work a few hours before the brain fog gets so bad that I can’t even put two thoughts together, much less work. On other days I can put in a good six or even eight hours of work. There is no consistency about how much time I am able to work. I have found that if I spend an hour playing word or logic games before I work, that I am able to use my mind for work longer. Also the days I am able to work longer I am doing tasks such as archiving old files in our database. This is a long monotonous process which requires very little brain power. Even if it is monotonous it does at least give me something I can do when the brain fog sets in.

I am somewhat lucky that I am able to work from home. Many cancer patients don’t have this option. Hopefully by the time busy season begins for the office I will be done with chemo and my brain fog will lift a bit. No matter what though I am more than happy to do whatever work I can from home. It is much better than just sitting around thinking about cancer.

Brain Fog

110311681Today 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.

Recently I’ve begun to understand that I suffer from brain fog. Here is part of what Mayo has to say about Chemo Brain:

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…

Dealing with a sick kid today

110308293Updated: 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.

A few ways cancer impacts my younger sons

Lawson & Ashton posing with me in their baseball uniforms.

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!

First experience with the Neulasta Onpro kit went well

Neulasta Onpro I had on my arm after 2nd round of chemo.

On Tuesday of this week I had my second cycle of chemo. That went quite well and I slept through most of it thanks to the Benadryl they shot me up with. The day after chemo, Wednesday, I needed a shot of Neulasta to build up my white cell blood count. In this post I will share my experience using the Neulasta Onpro device to automatically inject the drug into me at home.


I mentioned Neulasta when blogging about the day after my first round of chemo. Neulasta (pegfilgrastim) is a white blood cell booster used by some chemo patients. This drug can either be administered as an injection by a nurse or a patient can wear a Neulasta Onpro device and have the drug automatically injected from the comfort of their own home. I was unable to use the Onpro device during the first round of chemo because the hospital pharmacists was out of the device. This week the pharmacist had them in stock so I was able to use the Onpro device. The actual device I used is pictured in this post.

Applying the Onpro device to my arm was easy. The nurse unpacked the Onpro device and stuck it to the fatty portion on the back of my upper arm. She made sure there was a good seal all around the device. A couple of minutes after applying the device to my arm it automatically inserted the needle into my arm. There was a click when this happened and I felt a slight pinch. There was then a slow green flashing light at the top of the Onpro device letting me know it was properly attached and ready for the injection.

I only had one concern about wearing the Onpro device: it would have to be worn overnight. During the night I tend to move a lot and I had concerns the device would become dislodged from the back of my arm. My concern was unwarranted. In the morning the device was still in place and the adhesive was sealed all around the device.

The actual injection for the Neulasta cannot be done for at least 24 hours after the completion of chemo. The Neulasta Onpro device is scheduled to automatically inject the patient 27 hours after it has been attached. At the 27 hour mark the Onpro gave a series of fast beeps to let me know it would be injecting the Neulasta. After the beeping the light on the device went to a fast flash. This indicated the drug was injecting into my arm. I didn’t feel anything happen while it was injecting. The injection lasted about 45 minutes. After the 45 minutes there was another series of beeps and indicator light went to a steady green. The green steady indicator light meant the device was done injecting and that the Onpro device could be taken off. My wife then looked at the fuel gauge on the device. It showed empty so she peeled it off. I didn’t feel her take the device off my arm. There wasn’t even any blood in the spot the injection was made, just a tiny hole.

I think the Onpro device is great for cancer patients. My side-effects from chemo are pretty mild, so it probably wouldn’t be a big deal for me to get an injection with a nurses visit. Plus I have a wonderful wife and great friends who would bring me to a nurses visit for an injection of Neulasta. But there are many chemo patients that can barely move due to nausea and other side effects the day after chemo. The Onpro device removes the necessity of having to leave the home a day after chemo. Heck, my side-effects may be worse in a future chemo round and I may be in a situation where the Onpro device is essential. One never can tell the future.

In this post I shared my experience of using the Neulasta Onpro device to receive a white blood cell boost. The device is easy to use and removes the necessity of having one more trip to the oncology ward for a shot. I hope the hospital pharmacy is able to keep the Onpro devices in stock so I can use this convenient injection method each round of chemo.

Pain, the symptom I forgot to talk about

4384151Yesterday I shared the side effects from my first three-week chemo cycle. Overall I can’t complain because I feel my experience has been pretty good. One symptom I really haven’t talked much about is pain. In fact looking back at all the posts I’ve done so far it appears as though I have had no pain at all. This is far from the truth. In this post I will briefly review the pain I am experiencing.

Today I went through my second round of chemo. It went well. I slept through most of it; I think the immediate sleep I get during chemo is due to the Benadryl the nurse shoots me up with. While speaking to the nurse about any side-effects I basically just told her everything I had blogged about yesterday. Then my wife chimed in about the pain I’ve been having. My reaction was “Oh yeah”. I’ve been living with this pain for long I don’t even think about it anymore.

I’ve had various back pains for a number of years now. These aches and pains come from a mix of being overweight, out of shape, a smoker, and doing too much on my own when renovating apartments and garages. About a year ago though the pain in my shoulders and some of my ribs remained constant. I went to the chiropractor for this a couple of times. But he was only able to make them feel better for a couple of days. And even then the chiro was really only able to alleviate the pain in my lower back. I now realize it is because a lymph node was actually causing my skeletal issues in that area. It is likely that after adjusting me that the lymph node just pushed me back out of alignment. Now that the lymph nodes have been pushed back by chemo the lower back pain is mostly gone (although yes, it is still there).

Whenever possible I have tried to hide this constant pain from other people. I’m not really sure why. My wife of course has known this whole time. When sleeping I apparently swear anytime I roll over and encounter a shot of pain in my back and shoulders. Looking back I haven’t really even talked to doctors about the pain much, because I’m usually going in for something unrelated to the pain. Or at least I was assuming it was unrelated to the pain. I’ve already seen from the PET scan results that I had lymph nodes pushing into my spine and that I have cancer in my bone marrow. The current pain I feel in my shoulders and ribs is likely a direct result of the cancer in those bones.

Back to today’s appointment. When speaking to one of the nurses I said my pain was only at about a seven or eight. She thought it weird I would say only. Well, it quite often spikes to a ten if I sit or lay down wrong. Anytime I am not at a ten I consider tolerable. Sometimes I will take ibuprofen if I’m going to be sitting somewhere uncomfortable for a long time. This summer I did that a lot going to the baseball games my boys were in. That really only seems to last a few hours. If it is long day I will rotate between ibuprofen and Tylenol. Going back and forth between the two helps some. But I try not to use either pain reliever too often. Sometimes I will also take ibuprofen when going to bed; but again I try not to do so very often. It has always been my theory that I should save pain relievers for when I really need them.

The best pain reliever has been from the hot tub, which I am no longer using due to being on chemo. Sometimes a hot pack or ice pack will work a little bit. But not for very long. I’ve also tried a large variety of lotions and oils. None of them seem to quite do the trick. It actually makes sense the oils didn’t work now that I think about it. The pain is likely coming from inside my bones, lotions and rubs won’t reach there.

Now back once again to speaking with the nurse. I did let her know where my current pain is at and how strong the pain is. She let me know today would be the first shot I would get to boost my bones. I was given a shot of XGEVA. In about a month I should have another shot. Hopefully XGEVA will protect my bones enough that they can start to heal. If nothing else the XGEVA may help me from breaking any more bones (post for another day).

Going forward I am definitely going to have to let nurses and doctors know about all pains. I don’t think I was really hiding the pain from them. I just didn’t see it as relevant at the time. And when dealing with other people I think I tried to hide the pain because I don’t like to bother other people with my problems.  Hopefully in the future the pain will be gone and I won’t have to worry about it anymore.

PS. I do have some “clouding” going on as I write this. Hopefully this post made sense.

Side effects from the first cycle of chemo

15761528Tomorrow I go in for my second round of chemo. To me this is a huge milestone due to the fact I made it through the past three weeks feeling better than I had in months. Going into chemo I was wondering what side-effects I would suffer. I know others going into chemo treatments for the first time also have the same question. In this post I will share my side-effects encountered during my first cycle.

Before going on I should note that the drugs used in chemotherapy have a wide variety of side-effects. Different patients are likely to experience side-effects in different ways and also likely to experience various other side-effects. My hope by sharing these side-effects is to give patients an idea of what they may experience as a result of chemo therapy. Additionally I hope friends and family will get a better understanding of what chemo patients may be going through.

To make it easier for people to read the side-effects I will use a list format.

  • Fatigue – This of course was the first side-effect I experienced. The day of chemo and the next couple of days after chemo I seemed to do nothing but sleep. Even for the few weeks leading up to today I get very tired in the afternoon and often need a mid-day nap.
  • Metallic Taste – For a few days after chemo I had a light metallic taste in my mouth. Due to this metallic taste in my mouth the food I ate seemed to have changed flavors. The worse for a metallic taste was water. Luckily this only lasted a few days for me and wasn’t too bad. I’ve heard from other cancer patients that it can get so bad they would avoid eating altogether, which of course is not healthy.
  • Dizziness – The days following chemo I would experience dizziness if I moved around too fast. It didn’t seem to happen if I was sitting or walked slowly. After a few days this side-effect went away.
  • Overwhelming Hunger – For a few days I experienced overwhelming hunger. From the time I woke up to the time I fell asleep I could not stop eating. This was likely due to the Prednisone steroid. But even after the effects of the Prednisone wore off I still experience hunger throughout the day, no matter how much I eat. This lesser hunger is likely caused by one of the pills I have to take every day. I can’t really complain about this side-effect too much, many cancer patients are unable to eat at all during their chemo cycle.
  • Constipation – At least two of the drugs I take include constipation as a side-effect. The week following chemo seemed to be the worse. But even now I have to take docusate sodium in order to keep constipation at bay. I really don’t mind this side-effect after reading how diarrhea has impacted many chemo patients.
  • Chemo Brain – This will be the topic of a future post. My mind has definitely been impacted. Actually I think this began even before chemo and is more likely a side-effect of the cancer, being made worse by chemo. I have lost the ability to focus on more than one thing at a time (no multi-tasking). My wife and kids say I have had the exact same conversation with them multiple times, and I have no memory of the previous conversations. I have also had frustration and mood swings for no apparent reason.
  • Sensitive Gums – About a week and a half after chemo I started to experience sensitive gums. It wasn’t bad at first, I just had to avoid any spicy foods. About two weeks after chemo it became worse. For a few days I could not eat any food unless it was soft and fairly plain tasting. I had to brush and rinse after every meal. And even brushing had become a pain for my gums. The soft toothbrush was not soft enough. My wife went and found an extra soft toothbrush meant for people with sensitive gums. That helped a lot. I think the worse of that side-effect lasted three or four days. Now my gums are mostly back to normal, but I there is still a slight sensitivity.
  • Hair Loss – This side effect started just a few days ago. Going into this I thought hair loss would happen all at once. Nope, it has been a very slow process. I’ll do a separate post about this soon.
  • Bruises & Cuts – The oncologist warned me to be careful to avoid injuries. My body is fighting the cancer and chemo drugs, so the last thing I need are injuries for my body to deal with. This is especially true since the cancer is in my bones and they are more brittle. In the last few weeks I have some scratches that look like cuts and a finger which is now wrapped and will likely lose a fingernail (more on that in a future post).

These are all of the side-effects I have noticed. Most of them really aren’t that bad. Hopefully by sharing this list it will help future patients understand some of the side-effects they may experience. And just as important the family and friends of these patients can get some insight into what their loved one may be experiencing.

Getting out in public

Lawson marching in the parade. Photo by Ashton Santema, editing/effects by Ken Santema.

Chemo is very hard on the body. It lowers the bodies immune system, which in turn means chemo patients have to be careful around anyone who is or might be sick. But that doesn’t mean cancer patients have to be cut completely off from society while going through chemo. In this post I will share my experiences of balancing going out in public and keeping illnesses at bay.

There are a lot of misconceptions about chemo in the general public. One misconception is that chemo completely wipes out the immune system. This isn’t true. Yes, chemo definitely brings the immune systems down to potentially dangerous levels. But it is not down to zero. If the immune system was brought that low nobody would survive chemo. Plus chemo patients are given drugs to help boost the immune system. The Neulasta shot is an example of a drug taken to boost the immune system. It is definitely possible, and encouraged, for chemo patients to get out and about.

Of course some people on chemo are unable to get out in public due to the side-effects of the drugs being taken. In my personal experience it is tough for me to get out during the first week of chemo due to extreme fatigue. It is likely my body will react the same each round of chemo, so it is unlikely I will plan to attend any events during those weeks. I try not to focus too much on what I might miss on those weeks; it is what it is.

According to my oncologist, between seven to fourteen days after chemo my immune system is at its weakest. But again the immune system isn’t down to zero. It is during this time my two younger sons were in the homecoming day parade at their school. My youngest Ashton was on the sixth grade float and my middle son Lawson was in the High School marching band. I did not want to miss the homecoming parade. As a precaution I wore a face-mask and carried hand sanitizer with me. The mask is meant to keep me from breathing germs in while around people, especially in crowds. Actually it worked to keep people away from me. People would see my mask and walk as far around me as possible. It really didn’t bother me at all. I was able to watch the parade. That really made my day. I love being a dad and seeing my two younger boys in the parade gave me a morale boost.

That evening my son Lawson played in the pep band for the football game. I went to this game taking the same precautions as earlier. One good thing about going to a football game is that the field is so big. My wife and I didn’t have to sit in the stands. We were able to sit by the fence on our lawn chairs. This reduced the number of people around me, and the potential germs, to a minimal.

Also during the last two weeks of my three-week chemo cycle I have gone into the school numerous times. My youngest son has a muscular condition he is being diagnosed for. As part of this condition he is in a wheelchair for two to three days a week. On those days I will help him get his books into and out of the school. When I enter the school I make sure I have my mask on. Some of the kids gave me weird looks at first. But now they don’t really seem to notice.

Another precaution I take while out in public is politely refusing to shake hands with people. I do carry hand sanitizer with me, and use it quite often. But I really don’t feel comfortable touching other people’s hands. I’ve seen too many people cough into their hands and I have no idea what germs they have been around. I briefly explain why I won’t shake hands and each time the other person has understood. Maybe I’m being too over-cautious. Maybe not.

Now there have been events I have chosen not to attend, even though I really wanted. About a week and a half into my treatment cycle there was a district meeting for the American Legion I really wanted to attend. The post I am a member of was hosting this meeting and it included a meal. I really desired to attend the meeting. But it would have been a lot of people in an enclosed area and I know at least some of them would have colds or other illnesses. The risk just didn’t seem worth it.

As a geek I had also planned to attend the SiouxperCon convention in Sioux Falls this weekend. For months I had been looking forward to attending. The convention has comics, gaming, wrestling, and everything a geek could want. But I didn’t think it would be smart for me to attend an event of this type while my immune system was questionable. There are simply too many people congregated in a convention type event. Plus I get really tired every afternoon and evening, meaning I most likely would not have enjoyed many of the scheduled events anyhow. Next year I do plan to attend however!

Missing SiouxperCon did mean I was able to watch my son Lawson in the NSU Gypsy Days parade however. It was cool to once again see him marching in the band. In the week since the homecoming day parade it was quite obvious they had done a lot of practicing. They sounded and looked so much better (not that they were bad the first time, but they definitely needed improvement). The picture in this post was taken by my youngest son Ashton during that parade. I think it is important to focus on these events I can attend instead of getting depressed about the public events I miss out on.

Hopefully any chemo patients reading this will understand they can go out in public. Certain precautions need to be made, but there is no reason to be completely cut off from society. I look forward to attending events for my sons and will continue to do so.

Return to the fireworks show

21079636Those following my blog may remember the first time I saw the PET scan result showing cancer spread throughout my body. I thought it looked like the final display for a fireworks show. After that scan things moved very fast and I started chemo the very next week. In this post I will recall the experience of meeting with the oncologist a week after chemo and being able to see the PET scan images again.

My original meeting with the oncologist occurred on Wednesday, September 5 (which seems like a lifetime ago now). In the first half of that meeting I got to know the oncologist. The second half of the meeting was where I saw the fireworks going throughout my whole body. I don’t remember much from that first meeting with the oncologist. Luckily I had a followup appointment scheduled with the oncologists one week after receiving my first round of chemo; which was about two weeks after my first meeting with the oncologist. This followup meeting with the oncologist was on Wednesday, September 19, for those keeping track.

The followup meeting with the oncologist is much clearer in my mind. In this meeting my wife and I were able to ask any questions about my condition. Honestly I really didn’t have too many questions. I tend to research things on my own and the few questions I had were more to confirm what I had already researched. Probably the biggest question she answered was how many cycles of chemo treatment I would have. My wife and I remembered her saying different numbers. The oncologist said I was scheduled for eight treatments; but that I would receive a PET scan again after three treatments and the results of that scan may show it only necessary to have six cycles of chemo treatments.

After answering our questions I asked the oncologist if she would show us the PET scan results again and let us know what we were seeing. I thought maybe looking at it with a clear mind it would look less like a fireworks show. I was wrong. Every bone shown signs of cancer. There were so many lymph nodes from my neck to groin infected that I gave up on trying to count them. A few of those lymph nodes were pushing into vertebrae, which explains some of the back problems I’ve had over the last year. One of my lungs was mostly taken over with cancer; although the other one was clear so that was good. My spleen was mostly infected with cancer. The spleen being full of cancer is not a surprise since it is part of the lymphatic system.

The kidneys and bladder were lit up. But the oncologist said this was due to the tracer drug used during the PET scan. Even so she paused when looking at one of the kidneys and I noticed later in my chart that it was recommended a kidney have an ultrasound done in the future just in case. So that is one more scan I will likely have soon.

Two weeks prior the oncologist had told me there was some good news, but I couldn’t remember what that was. She now let me know that news again. The glow of the cancer in the bones was consistent with the glow from the cancer in my lymph nodes. This likely meant the cancer which had spread was still low-grade and most likely had not transformed into a more aggressive form of cancer. She also let me know I would have an injection coming up to boost my bone marrow. Somehow I had forgotten that important bit of information from the first meeting with her.

I will have another PET scan after my third chemo treatment. Hopefully by that time my PET scan results will no longer look as extreme as this scan. Since my lymph nodes have shrunk and I can once again breath, I am assuming the chemo is doing something. I know my type of cancer can’t be cured, but I sure hope to see it being pushed back.