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.

The hunger!

20628717In the fight against cancer I have been taking a variety of drugs,  especially on chemo week. Many of these drugs have side-effects. In today’s post I will briefly discuss the side-effect from one of these drugs which caused a hunger that seemed insatiable.

On Saturday, September 15, I was able to breathe again. It was a great day. That was also the day I noticed a new side-effect from my chemotherapy: insatiable hunger. I don’t think its an exaggeration to call it insatiable either. From the time I ate breakfast until I went to bed I was constantly hungry. No matter what I ate or how much I ate that hunger would not be satisfied. If I tried to ignore the hunger it would just get worse and worse. All day Saturday, all day Sunday, and most of Monday I would eat in a seemingly continuous manner. It is possible I would have eaten all day Thursday and Friday if I hadn’t been sleeping so much.

On that Sunday I decided to research the drugs I have been taken. The type of chemotherapy I am on is something called R-CHOP. This chemotherapy regiment uses one monoclonal antibody drug (R), three chemo drugs (CHO), and one steroid (P). The steroid I took as part of R-Chop was Prednisone. I had never taken a steroid such as Prednisone before, so I had no idea that hunger was a possible side-effect. Since then I’ve spoken with other people who have taken Prednisone before, and some of them had the uncontrollable munchies just like I did. They told me to just wait a couple of days and it would go away.

I can’t complain too much about this side-effect. There are a lot of people on chemo that are constantly sick and unable to eat. Those people tend to lose a lot of weight. The only real reason I was worried is that I had recently lost a lot of weight, and I didn’t want to gain a lot back because of an uncontrollable urge to eat. Of course someone recently mentioned to me that the massive weight loss I’ve had this year might have more to do with the cancer than the steps I had taken to lose weight. Sadly I think that might be true, but I am still proud of losing all that weight and still want to get down to a more healthy weight. I just have to remember the few days Prednisone is making me overeat won’t matter in the long run. It will only be five to seven more times that I actually take this steroid over the next half year. That really isn’t too bad.

All-in-all I feel lucky that most of the side-effects I have endured are very minor. Many cancer patients experience debilitating side-effects during chemo. The side-effect of overeating for a few days really doesn’t seem too important in the grand scheme of things. Now I know to keep to some healthy-ish snacks on hand for after chemo… and a lot of them at that!

Being able to breathe again

21017025I’ll never forget that day. It was Saturday, September 15, when I was able to breathe again (10 days ago as I write this.) As the diagnosis of my cancer proceeded my breathing problems became increasingly worse. Not being able to breath had almost become a part of me, even it was a part I didn’t like. In this post I will share my experience of being able to take a full breath of air once again.

As I have noted many times writing about the diagnosis phase of my cancer experience, I have been having problems breathing for a number of months. It got so bad that I looked forward to having a port surgery performed just so I could get a break from the breathing problems. A lymph node in my neck was pushing against my windpipe. That restricted the amount of air I could breath. It got so bad at the end that even getting up from a chair or taking a couple of steps would leave me breathless.

On Tuesday and Wednesday of that week I had my chemo treatment. Then for two days I basically slept my days away. So on Saturday when I woke up in the morning I was expecting to just lay around all day. I was actually feeling pretty good that morning and decided to go out to my pickup truck to grab something out of it. As I opened the pickup door I had to stop and think about what had just happened. I had walked all the way to pickup truck from the house without my walking stick and without stopping to catch my breath. My pickup was at least a hundred feet away from the house on that day. I was so excited that I decided to keep walking to make sure I hadn’t somehow tricked myself (I know that might not make sense, but that was the thought I had).

I spent the next half hour walking all over. My wife and I have two quite large gardens. I walked out to those gardens and walked around them several times. I walked to a neighbor’s house and checked out the progress of construction being done on his house. I walked down our very long driveway to check the mail. I kept finding excuses to walk around and would have jumped for joy if I could have.

After all that walking I was starting to get a bit tired, but that tiredness seemed to come from my chemo recovery and not from breathing problems. Actually, I think I almost hyperventilated from trying to see just how fast and long I could take breaths of air. It was a good day.

The thought occurred to me that my lymph nodes must have gotten smaller. It was then I touched the very large lump on my neck. Or rather I went to touch the very large lump on my neck, but it was gone. Between my neck, armpits and groin there were at least seven lymph nodes I had been able to feel previously. All of them appeared to be gone now. I knew the cancer was still in me, I had only one chemo treatment so far after all. But I now felt energized by being able to breathe and having the lymph nodes pushed down to a normal size.

Later that day I did some very light yard work. I still had to be careful as I can’t be in the sun too long and I would still get tired very quickly. But for the first time in months I felt halfway normal again. Nobody was going to take that from me. Not even my well-intended (and correct) wife telling me not to overdo it. In the end I probably did overdo the activity that day because I was very tired again for all of Sunday. It was worth it though.

As I end this post I can’t help but be thankful for being able to breathe again. I vaguely remember someone once saying the secret of life is to keep breathing. At this point I really can’t disagree with that statement.


I also couldn’t get the Pink Floyd song Breathe out of my head. In particular I couldn’t stop thinking of the first two lines:

Breathe, breathe in the air
Don’t be afraid to care

Getting a white blood cell and friend boost after chemo

Blood cell types vectorOne day after receiving my first chemo treatment I decided to start this blog. Also that day I had to go back to the cancer center to get a shot which would boost my white blood cell count. In this short post I will share that experience.

In the previous post I noted how tired I was during the days following chemo. It is then not surprising that I forgot making a trip to the cancer center for a shot which would boost my white blood cell counts. Luckily I keep a log of everything going on so I don’t miss out on anything I’ve done. Actually I would recommend all chemo patients keep a log of some sort due to “chemo brain” (more on that in a future post).

A good friend took me to the appointment. I really appreciate him doing so. My wife has already been overwhelmed trying to keep up with work and caring for me. In the last few weeks I’ve learned how important it is to accept help from friends and family. This friend in particular really helped me to stay positive. Before and after the appointment we drove around and just talked. Talking seems to sometimes be a lost art these days due to technology and social media.

At the appointment I received a shot of Neulasta (pegfilgrastim). Chemo is effective against many types of cancer due to the fact it prevents cells in the body from dividing and growing. Since cancer cells rely upon diving and growing it is possible for chemo to attack those cancer cells directly. Unfortunately however chemo also affects many good cells within the body. White blood cells in particular are attacked by chemo treatments. This means chemo patients have a dramatically increased chance of getting an infection. Neulasta is a common white blood cell booster used by chemo patients.

In the future I may not have to go back to the cancer center to get this shot. Originally I was supposed to have a Neulasta Onpro. The Onpro is a cool little device that is attached to the arm. At the designated time, in this case about a day after chemo, the Onpro device will automatically give the patient a shot of Neulasta. This is great for chemo patients since they don’t have to make an additional trip to the doctor. Since the hospital pharmacy was out of the Onpro devices on the day I had chemo, it was necessary for me to come back for the shot.

I’m not really sad the hospitals pharmacy was out of the Onpro devices. Going back to the doctor meant I was able to hang out and talk with my friend for a while. Looking back I let work and other projects get in the way of hanging out with friends. After I am through the chemo process I hope to change that and become a better friend to many of the people in my life. It’s sad it took getting cancer for me to realize how important friends really are.

I’ll end this post here. Even though getting my white blood cells boosted was the reason for my appointment that day, I think it is more important that I learned a life lesson. My understanding of how important friends are was boosted. Perhaps the world today would be a better place if people just understood how important friends are and took more time in their lives to spend time with friends.

After chemo: sleep and finding a purpose

3247214Yesterday I blogged about my experience going through chemotherapy. One large side-effect of chemo was that I had become extremely tired. In this post I will document the couple of days following chemo. It is during that time I decided to find a new purpose in order to help me cope with cancer.

As I noted in the previous post, chemo made me extremely sleepy. The two days after chemo wasn’t much different. It seemed I could only work until about noon and I then had to lay down for a nap. Luckily I am able to work from home and it is plausible for me to take naps during the day. Even when I wasn’t napping I felt very groggy and people around me would ask me if I had to lay down. The worse of this grogginess seemed to only last a few days after the chemo treatment. With all of the possible bad side-effects of chemo I can’t really complain about a little sleepiness.

It was during this time that I decided to find a way to better cope with my cancer. Researching online I had read about the many ways cancer patients cope with their diagnosis and treatment. I had also read that many people have problems coping with cancer and can often feel isolated. It was then I decided to draw upon my past experience as a blogger and start a new blog focused on being a cancer patient. My hope was that by sharing my experience it would help others in similar situations cope with their cancer. I also had hope that family members and friends of cancer patients could maybe get some better insight into some of the experiences a cancer patient has to deal with. Finally, I hoped that by sharing my experience it would give me a new purpose and better allow me to cope with what is actually a pretty shitty situation.

The first post I did, a short welcome post, was on the first day after chemo. I remember being so exhausted after writing such a short post with no real content. The grogginess was so bad that I wasn’t sure my post would even make sense. But, after publishing the post I felt like something had been accomplished and I began to mentally plan posts for the next few weeks. Focusing on what I could do with this blog gave me something to look forward to. Don’t get me wrong, my family also gives me something to look forward to and I plan to stick around to watch my kids grow and to share life with my wife. But this was different. This blog was/is giving me something different. It is hard to explain, but this blog makes me feel like I am attacking the cancer on my terms and has empowered me to be even more mentally strong in the battle against cancer.

My second post, which basically recapped the symptoms I was having for the last year, really exhausted me. But it also showed me the new blog not only gave me a purpose, but has helped others. Family members of cancer patients in particular have been sharing that post because it has been tough for them to understand why their loved one did not discover their cancer sooner. The emails and messages I’ve received from people reading this post have let me realize how much friends and family of cancer patients suffer. Getting those messages has helped me fight the grogginess on my bad days and focus on writing blog posts.

In this post I shared the grogginess I experienced the first couple of days after receiving chemo treatment and finding a new purpose. Going forward on this blog I plan to write about a variety of cancer-related topics. But at the heart of this blog I plan to always share any experiences I have in the hopes it will help others get through their cancer and help family and friends of cancer patients better understand some of what they are going through.

The first round of chemo

One of the chemo drugs administered to me is a deep red and looks like a toxin.

It is now time to write about my first round of chemo. In the last post I documented my experience getting a port installed in my chest. With the port installed I was now ready to receive my first chemo treatment. In this post I will share how this first round of chemo went.

It was Monday, September 10, when the surgeon installed the port into my chest (just 12 days ago as I write this). During the surgery my wife discovered that insurance had yet to pre-approve all of the chemo drugs. That is another thing we learned. Chemo as a whole is not what the insurance company has to approve. Instead the insurance company had to approve all four of the chemo drugs the doctor was prescribing. It was late morning before I was released from the hospital for surgery. My chemo was rescheduled for Tuesday morning with the expectation that insurance would finish pre-approving all of the drugs. Luckily the insurance company did finish their pre-approval process later Monday afternoon. My annoyance with the insurance company will be the topic of a future post. I really should have had my chemo started that day.

On Tuesday my wife put a numbing cream on my port. Since the port had just been installed the surgeon has prescribed a cream that could be used to numb the port during its first use. I remember she was nervous about not getting enough on, but I don’t remember feeling the needle at all when they hooked up to the port. My wife did great.

At the cancer center they took my blood right away. I was told that would be done every time I had treatment to ensure my numbers were good enough to proceed. As time goes on I hope to better understand what numbers are actually being followed to determine if I am OK to receive treatment. My numbers were apparently OK, because a needle was inserted into my port and an IV bag was hooked up to me.

Going into chemo I was very nervous. I had heard so many bad stories about people going through chemo and was sure I would have to endure mind-numbing pain. In my mind I had pictured the chemo entering my body like fire and I was prepared for my veins to burn. Well, nothing like that actually happened. I believe before receiving any of the actual chemo IV bags I had a bag with some antibiotics. After that I received a bag of the first chemo drug. Each of the bags were set to drip very slowly. This was being done because it was my first time receiving these drugs and it was unknown whether I would have a bad reaction. Luckily I did not have a bad reaction. My previous fears had been unfounded.

That day I received three of the four chemo drugs. The fourth drug would take the longest to administer and the oncology staff felt it would be best to do that fourth drug the next day. At the time I really didn’t care either way, but looking back I’m glad it was scheduled the next day. My wife was already having a long day. As it was we got out of the hospital in the early afternoon.

By the time we got home I was getting a bit tired. I laid down for “a few minutes”. Three hours later I woke up. The odd thing is I could have sworn it was the next day when I woke up. My wife and neighbor had to work hard to convince me otherwise. It actually took them quite a while to make me understand it was still Tuesday. I’ve heard other chemo patients will have similar stories after receiving treatment. Some say it is a part of “chemo brain”. I don’t know if that true, but I do know the same exact thing happened the next day after receiving the rest of my chemo treatment.

That night I slept better than I had in months. Unfortunately my wife didn’t sleep much at all. She kept checking on me all night long. I believe she was expecting some sort of bad reaction. It didn’t help matters any that she was not sleeping in the bed with me. One of the side-effects of chemo is that my body excretes toxic chemicals. This includes the sweat coming out of me at night while I’m sleeping. For about 72 hours after chemo the rest of my family basically has to stay out of my bedroom and the bathroom I use due to the these chemicals. I was not able to smell these chemicals, but my wife said they were toxic smelling. That smell could also have contributed to her lack of sleep.

One other reason my wife may have been concerned is that she would not be at my side during the second day of chemo. Our youngest son is being diagnosed for some sort of debilitating muscle disorder. Months earlier an appointment had been setup for him to see a geneticist in Sioux Falls who specializes in such disorders. She did travel to Sioux Falls with our son, but she wasn’t happy about leaving me behind. The staff in Sioux Falls said in the future they would work around chemo days so both of us could be at his appointments and she wouldn’t have to choose.

It was a brother-in-law that took me to chemo treatment on Wednesday. I still appreciate him doing so. He gave my wife constant updates, which made her feel better about leaving me behind. Since I only had one drug to be administered that day I thought it would take less time. I was wrong. That last drug was in a very large IV bag and it was being dripped very slowly. At regular intervals (I think every half hour) they would increase the speed of the drip, but it seems like that bag would never empty. The staff was dripping this bag slowly because it has some very nasty potential side-effects. Luckily I did not experience any adverse reactions to the drug.

About mid-afternoon I was finally done with the chemo treatment. I really don’t remember much about that treatment. I vaguely remember my mother-in-law bringing me a roast beef sandwich for lunch. Also, I think I remember getting a Blizzard from Dairy Queen on the way home. Really though most of that day is a blur to me.

Just as I had the previous day, when I got home I took a nap. One again I was out for a few hours and was sure it was the next day when I woke up. Those chemo naps are sure something! Some time that evening my wife and youngest son returned from Sioux Falls. She let me know what had happened during his appointment, but I had to have her tell me again a few days later. It appears anything told to me during chemo days was unlikely to be remembered.

I’ll end this post here. In this post I shared my experience going through chemotherapy. Luckily I did not have any adverse reactions to any of the chemo drugs. It appears the main side-effect for me was being  tried and being put into a very deep sleep. That really isn’t such a bad side effect. In the next posts I will share some experiences from after chemo.

PS. In the future I will blog about the specific chemo drugs.

Getting the port installed in my chest

21810462Yesterday I blogged about learning just how widespread my lymphoma cancer was. My body seemed to look like a fireworks display in the PET scan. Due to the widespread nature of the cancer and other factors it was decided it would start chemo soon. As I continue documenting my cancer experience it is time to write about getting a port installed in my chest to facilitate chemo.

Wednesday, September 5, was the day I had a PET scan performed and was able to see the fireworks. The oncologist said a surgeon would be calling me soon to hopefully get a port installed in my chest on Friday. She explained the port would allow the chemo drugs to go directly into a major vein. If that is installed and if insurance pre-approves the chemo drugs she hoped to start my treatments the next Monday.

On Thursday I got a call from the clinic to set up a consultation appointment with a surgeon late Friday morning. I took the fact that this was a consultation appointment to mean that I would not likely get the port installed on Friday. This kind of annoyed me. But then I should mention at this point everything was annoying me; and my family can probably attest to that fact. My breathing had continued to deteriorate. Even simple things as getting out of a chair or walking across a room were leaving me breathless. The inhalers I had been using to improve my breathing were basically useless at this point.

On Friday morning, prior to my appointment with the surgeon, my oncologist called to ask how I was doing and the status of my port. I let her know I had an appointment later that morning. She said she would work with the surgeon to come up with a plan. Part of me was annoyed she didn’t know the current status; but another part of me was happy with the fact a doctor was calling me instead of having a staff member do it.

The consultation with the surgeon went very well. He is a very likable guy and I could relate with him right away. One thing he did that nobody had done to that point was ask my wife and I “has it hit you yet?” We had to admit it really hadn’t. It seemed everything was going so fast.

During the appointment, the surgeon took the time to explain to me what exactly a port is and why it was important to be installed. Since the chemo drugs have to be injected into the bloodstream intravenously he explained a port makes the whole treatment process go smoother. Receiving chemo drugs the traditional method is very rough on the veins in the arms. As each treatment passes it may be harder for staff to get a good vein.

In order to facilitate the chemo treatment process a port can be surgically installed into the chest, the surgeon explained. What he planned to do was perform a surgery from the front of my shoulder (I believe he said left at the time, I could be remembering wrong.) He would insert a catheter into a vein in my shoulder, which would run to a small device inserted just under the skin in my chest. He would use his finger to actually create a small cavity the port could rest in. When the procedure was complete I would be able to receive injections (or even blood draws) by putting a special needle through my skin into the port. Since the port was always connected to a vein it mean oncology staff wouldn’t have to fight with find a vein every time I had chemo. He showed the type of port he would be installing, it was about the size of a quarter. The type of port I had installed can be viewed on this website.

After explaining the process the surgeon answered all of the question that my wife and I had. Actually he made sure this was something I wanted before proceeding. The he said he will work to figure out when the surgery could be done. Usually he does surgeries on Tuesday, but he understood from talking to the oncologist that we wanted the port on Monday. The surgeon let me know him and his staff would figure out a way to get the port installed on Monday morning and that I would get a call in the afternoon.

That afternoon I did get a call from the hospital to set up the appointment for my surgery early Monday morning. They were able to schedule an operating room with a bit of shuffling. As with most surgeries I was told to fast the morning of the surgery. I was also told not to take any ibuprofen that weekend. It is good that was mentioned. I’ve never really had a lot of surgeries before and I had no idea that ibuprofen is a blood thinner. My back aches so much that taking ibuprofen is almost second nature to me by this point.

The night before the procedure I remember looking forward to getting surgery. I didn’t care about the port at this point. Really all I wanted was to be knocked out so I didn’t have to worry about my breathing problems anymore. By this time I was getting very little sleep and any amount of activity, including talking, would leave me breathless.

In the morning my wife took me to the hospital and I went through the normal check-in process. Before surgery I remember speaking briefly with the surgeon. I also remember being wheeled into the operating room and the surgeon joking around with the OR staff using a quote from The Waterboy (I love that movie). That is the last thing I remember from before the surgery. Those knockout drugs are amazing!

When I woke up I remember speaking to my wife about the procedure. She had been worried during the surgery because it took a lot longer than had been planned. The surgeon had run into multiple problems. He first tried to connect to a vein in one of my shoulders. But there were so many lymph nodes and they were so rock hard that he could not get a clear path. He tried to access a vein from the other shoulder and he ran into the same problem. The front of my two shoulders show the multiple attempts me made to find a vein. It looks like a little mine field had exploded.

Since the surgeon was unable to access a vein from my shoulder he had to access a vein in my neck. The port was installed on my right chest and the catheter runs under my skin to about half way up my neck. The catheter was then surgically installed into a vein running through my neck. The path of the tube can be seen since it is just under my skin. He also said the port is not inserted as deeply as he usually likes due to the problems he ran into. When looking at my chest there is a lump that is actually caused by the port. But even with the problems the port was installed and was ready for use.

After the surgery my wife said the surgeon and the oncologist met with her for about a half hour. They talked about the procedure and what would happen going forward. I really appreciate the fact both doctors took time to speak with her and keep her informed. It was then my wife found out chemo might not happen that day since the insurance had yet to pre-approve all of the chemo drugs. But that is a story for the next post.

At discharge I was given a prescription for some of the good painkillers, which I only used for a day. I really don’t like the way those painkiller make me feel so I use them only as necessary. I was also told not to lift anything for a few days and to take it easy.  Since I still had my  breathing problems I found it unlikely I would have the urge to do anything stupid like lift heavy objects.

I’ll end this part of my cancer documentation here. In this post I blogged about meeting the surgeon and getting a port installed in my chest. I’m thankful I had a surgeon that was good enough to deal with unexpected barriers and come up with alternatives in order to get my port installed. In the next post I will blog about my chemo experience, which I was starting to get nervous about.

Meeting the oncologist part 2: The Fireworks!

34711852Two days ago I blogged about the first half of the initial meeting with my oncologist. Most of the first half of that meeting was about getting to know the oncologist and deciding whether my wife and I trusted this doctor to care for my cancer. Now I will focus on the second half of the meeting. Everything changed at that point due to the results of my PET scan.

The events of this post happened on Wednesday, September 5 (about two weeks ago as I write this). Earlier that afternoon I had a PET scan done. After the PET scan I met with my the doctor who would become my oncologist. About half way through the meeting with the oncologist my PET scan results were released. That was when the fireworks started.

As my doctor opened the PET scan results she explained we would be looking at “slices” of my body starting from neck and going all the way down to my thighs. She went on to explain there would be a glowing in the places where cancer was present. Almost immediately we were able to see about a handful of large glowing areas in my neck. I already knew there were lymph nodes with cancer in my neck because one of them was causing my windpipe to be restricted. What I didn’t expect to see was glowing everywhere as the doctor went along my body. I can’t actually remember much of that first scan, just feeling of being overwhelmed at seeing so many glowing spots. I also vaguely remember seeing my spleen and one of my lungs were infected with cancer. In my mind this looked like the finale at a large fireworks display. It appeared fireworks were going off everywhere!

I know the doctor took me through the whole scan an explained everything as we went. But I really don’t remember any of that. All I remember is her saying is that since my bones were infected that I would not need a bone marrow biopsy. She also talked about my symptoms and the fact that I would need to start chemo immediately. My lymphoma had spread to a point where a watch and wait approach would not longer be appropriate. Vaguely I also recall her saying there was some good news in what she saw so we would only have to do a chemo approach. I can’t remember exactly what that was she said though (in two weeks I met her again and know what she said now, but I will cover that in a future post).

After speaking with the doctor, my wife and I both agreed that we would proceed with chemo as soon as possible. The doctor put in an order to have a port placed in my chest to make chemo easier. This was on a Wednesday and she hoped the surgeon would be able to get the port in on Friday. She also hoped for me to start chemo the next Monday, although that was dependent upon me getting a port in before that time and upon the insurance company pre-approving chemo by that time.

Looking back I don’t remember feeling any particular emotion. I think I was just overwhelmed with finding out the cancer had spread throughout what appeared to be my whole body. There was probably a lot more said by the doctor during that meeting which I am simply forgetting. Luckily I had a meeting two weeks later with the doctor as she patiently went over everything with me again (again, that will be in a later post). Now that I think about it, I don’t even remember going home that day or if I finally got to each lunch after fasting for the PET scan. All I could see is the “fireworks” going off throughout my body.

This is where I’ll leave off for today. Even though I don’t remember much about the second half the initial meeting with oncologist, I will definitely never forget the fireworks discovered during said meeting. In the next post I will continue my story as I meet the surgeon and get a port placed in my chest.

Recap of the posts documenting diagnosing my cancer

20011163Over the first week of this blog I have been documenting what I call the diagnostic phase of my cancer experience. In this post I will briefly recap those posts. I am doing the recap today because I am upgrading the software this blog runs on, and if something goes wrong at least I’m not losing any new content. Tomorrow I will be back to blogging as normal.

Besides my welcome post, the first post about my cancer experience had me asking whether I should have discovered my cancer sooner. This post documented my experience up until middle August of this year. In the end I came to the conclusion that I would not likely have discovered my cancer any sooner due to the lack of cancer-specific symptoms. Really until a lymph node stuck out of my neck it looked like I was having some sort of lung problem.

My next post began with getting the results of a CT scan. This was the first sign of something more serious than just lung problems. My continually deteriorating breathing problems appeared to be caused by a lymph node pushing against my windpipe. I also started to experience (or perhaps started to notice) new symptoms.

After the CT scan I had a biopsy done on the large lymph node sticking out of my neck. In that post I documented my experience getting the biopsy. Going into the biopsy I wish I had read something similar to my post so I knew what to expect.

When the biopsy results came back I had to get a PET scan. The PET scan was necessary due to my biopsy showing I had follicular lymphoma. In this post I not only documented the PET scan experience, but also some of the anxiety I had about the scan.

Yesterday I posted about meeting my oncologist for the first time. I only focused on the first half of that meeting, since the second half will be the subject of my next post. Most of what I remember from first meeting my oncologist was my wife and I determining whether we trusted the oncologist to properly treat my cancer. In the end we both decided the oncologist could be trusted and that doing my cancer treatments locally was a good idea.

At the beginning of this post I noted this was just small recap post. Over the next few days I will blog about seeing the PET scan results, the rush to chemo, getting a port inserted into my chest, and my first chemo experience. For those of you wondering, that all happened in just the last two weeks.