Each round of chemo gets harder on the body

Last week I had round five of chemo. My blogging has been somewhat lacking since receiving my latest round of infusion drugs. Partly this has been due to my being busy with other projects. But honestly a bigger reason is because I feel just plain beat down. Each round of chemo seems to get harder on the body.

Overall I really can’t complain about the side-effects I’ve had while on chemo. The main side-effects I experience are brain fog, insomnia, and bone pain. I don’t experience debilitating nausea like some on chemo experience. But I have noticed over the last few rounds of chemo that each time I just feel more run down. Of course the lack of sleep may have a lot to do with this run-down feeling.

Over the last few days I’ve been reading the experiences of a lot of cancer patients, especially for those on the chemo regiment I am taking (R-CHOP). I can’t help but think of Forrest Gump when reading through these stories. I can hear him saying something like “Chemo is like a box of chocolates, you never know what you’ll get.” With so many possible side-effects it almost seems that each persons experience with chemo is truly unique. Plus many people on chemo, including myself, appear to have their chemo experience change each round. In my case it appears to get worse each time. But other chemo patients appear to have fewer side-effects with each round.

Today, a week after my latest round of chemo, I actually feel pretty good. It does make me wonder what round six of chemo will be like for me in two weeks. Theoretically that could be my last round of chemo, which at this point I wonder how worn down I will feel after that round. I guess I’ll find out in two weeks.

My port mostly worked for round 5 of chemo

Last week I blogged about the catheter connected to my port being retracted. The surgeon didn’t think this would be an issue for receiving my chemo infusion. Yesterday had I round 5 of my chemo infusion and the port worked fine for receiving drugs from the IV, but not for taking blood draws. In this post I will share that story.

The chemo appointment started as it normally does. One of the nurses accessed my port by connecting a needle contraption through my skin into the port. She then proceeded to flush the port, which the surgeon said might actually undo the retraction. The port flushed fine and there didn’t seem to be any resistance. That was good. But then the nurse went to take a blood draw from the port and she was unable to get anything to return. Her and another nurse tried multiple flushes, I think around eight or so. For some of those tries they had me move my neck into different positions to see if that would help. Nothing made a difference. The flush would go through the catheter fine, but no blood would come back when trying to get a blood sample. After speaking to the surgeon over the phone, the nurse said we would get an x-ray to see what was going on with the catheter now.

As a recap this is the picture previously posted to recreate what my x-ray looked about a month and a half ago. In this picture the catheter is correctly going from the port, up to the neck and down through my jugular, and stopping just outside of the heart.

port

This next picture is how the port looked about a week and a half ago. Looking at this picture is shows the catheter being retracted into a loop. The end of the catheter is also further away from the heart due to the loop.

portretracted

Finally, here is a recreation of the x-ray from yesterday. The loop is gone, but now the catheter is in a J shape in the jugular.

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After viewing the x-ray I received a visit from the surgeon. He believed flushing the port must have caused the end of the catheter to straighten out. But it was not strong enough to completely extend the catheter. Since the catheter is still in the jugular and not in a smaller vein, the surgeon decided it was OK to proceed on to chemo with the catheter as it is. He noted the blood draw would have to be done on my arm. He also did a couple of flushes to ensure there was no resistance. He also verified blood draws were not possible. At the end of his visit he said we would look at this again in a few weeks after round 6 of chemo is done. After that he would be comfortable fixing the catheter, since I will hopefully be done with chemo treatments. My PET scan after the sixth round will decide if I have to go a full eight treatments. But my PET scan after round three looked good, so I hopeful the next PET scan will show no active cancer in my bones. If I have to go a full eight rounds I’ll speak with the surgeon to see what the plan will be then.

After the surgeon left, a tech from the lab came to take my blood. As usual my numbers were looking good. Each round of chemo my blood numbers have looked good and recovered well from the previous round of chemo.

Finally it was time to receive the drugs through my port. The saline bag flowed fine. Then the antibiotics were put through the IV and they ran fine. All of the drugs the nurse put in through the IV flowed fine.

Hopefully the catheter will be fine for round six of chemo, which happens to be scheduled for the day after Christmas. Fluids flowing from the port to the jugular are working good. The only problem right now is that the port cannot be used to do blood draws. Basically my ports catheter is acting as a check valve. Of all the problems one can have with a catheter or port this one isn’t so bad. But it is something that will eventually have to be dealt with. After I’m done with chemo I’ll have two years of rituximab maintenance infusions.

The second PET scan looked good!

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Kicking the cancer into remission means being able to spend more time with my boys and I am better able to take care of Ashton on the days he cannot walk!

Last Wednesday I had my second PET scan done to see how well my first three rounds chemo has been working at pushing the lymphoma back. Friday of last week I posted about the scanxiety of waiting for those results. Luckily over the weekend the notes about the scan had been released and it appeared to be good news. Yesterday during my scheduled round of chemo I had an appointment with my oncologist so I could actually see the scan images and get her take on the scan notes. Overall I will say it is great news!

 

The original PET scan reminded me of a fireworks display show. This scan looked nothing like that. Previously I had what appeared to be dozens of lymph nodes from neck to groin lit up with cancerous activity. This time there were no lymph nodes showing any activity. In the first scan my spleen was very over-sized and most of was showing cancerous activity. This time my spleen was almost down to a normal size and showed no cancerous activity. One of my lungs showed quite a bit of cancerous activity. With this scan there was no presence of cancerous activity. I was ecstatic to see this dramatic change.

The cancerous activity was not all gone. My bones still show activity in them. But that cancerous activity is greatly diminished from what it was. The oncologist says it is normal for the bones to take longer. She did say she is happy with the progress made on the bones, even if it is not as far along to being in remission as the rest of the cancer is. I guess bones take a lot longer to heal.

In the notes from the imagine expert it was noted that I have sinusitis. I was given a Z-Pack prescription to take care of this. Despite my best efforts to keep germs and bacteria away, I must have picked up a cold from somewhere. Luckily it isn’t anything too serious. I actually already figured I had something going on with my sinuses for the last week or two due to a stuffed/runny nose and coughing. But part of me thought it was just a side-effect from a chemo drug or fall allergies. Actually I wonder if fall allergies lowered my immune system even lower so I was able to catch some sort of cold.

I just finished my fourth round of chemo today. After six rounds I will have another PET scan done to see if I can stop there or have to go the full eight rounds. I am really hoping I only have to do six rounds. This chemo stuff is very hard on the body and mind. If things go right my final round of chemo will fall on the day after Christmas. That should make for a happy holiday season.

PS. You may have noticed I said I spoke with my Oncologist on the day I was scheduled to have chemo. My chemo was postponed a day due to the hood used by the pharmacist while mixing chemo was broke down on Tuesday for a time. It was repaired and I did chemo today (Wednesday) with no problems. I don’t blame the pharmacist for not wanting to mix chemo chemicals without proper ventilation, this stuff is very toxic!

Fall allergies while on chemo

Cleaning up Yard during AutumnEarlier this week I noted there wouldn’t be any real post that day due to not feeling very well and my brain fog being too thick. For the last few days it has been hard to put thoughts together and breathing has been very hard. Luckily today I seem to be back to normal and believe it was in fact fall allergies which took me down for the last few days.

One thing I love about our home is that we have a lot of old trees surrounding the house. Of course that also means a lot of leaves. Sunday of this week was a very nice day. It was slightly cool, but there was no wind at all. This was perfect for one last time to clean the leaves in the yard. I spent a few hours in the afternoon with my leaf-blower and hauled a full pickup load of leaves to the dump site. Not only did I feel that something was accomplished by removing all the leaves, I also got some good exercise in.

It didn’t occur to me at the time to worry about my fall allergies. I am already taking Claritin every day. I partially take Claritin to combat fall allergies; and partially to combat the side-effects of certain drugs I am taking; more specifically Claritin helps battle the side-effects of Neulasta and Xgeva. Even though Claritin does a fine job of keeping fall allergies at bay, it does have its limits. I apparently found those limits by using a leaf blower to shoot a lot of allergens into the air.

I didn’t exactly have my normal fall allergy symptoms. Typically during fall I get a runny nose, my sinuses feel plugged, and my head feels like it is going to explode. This time I had a little bit of a runny nose, but I don’t believe my sinuses were clogged at all. My head didn’t feel like it was going to explode either. Instead I had a harder time breathing and I just felt “off”. Additionally my brain fog seemed to really get thick. I just couldn’t put any thoughts together at all. Finally today, four days later, I feel almost back to normal (well the new normal for me being on chemo).

This morning I was in contact with another cancer patient going through chemo. She has a similar experience when doing yard work. To combat this she has to take a shower immediately after doing any yard work and ensure she doesn’t come in contact with the clothes she was wearing again until after they have been washed. Additionally if she has done something like raking she will put the blue mask on. That day I did not take a shower until the evening. Now I know to do that right away.

Now that there is a light layer of snow on the ground hopefully fall allergies won’t be an issue. Furthermore, if my treatments go right I hopefully won’t be on chemo come spring when I have to worry about allergies again. Either way I now know my body definitely reacts differently to fall allergies than it used to. I guess it’s just one more thing to watch out for while on chemo.

The blue mask

SONY DSCIt is Halloween today! This is a day where a lot of kids and adults wear masks to pretend they are someone or something else. In the past my wife and I have held Halloween parties and dressed up in couples costumes (my favorite was me as a gunslinger and her as a barmaid). Between my being on chemo and us traveling to get our youngest son seen by a specialist, no costumes or parties are happening this year. Even so I will be wearing a mask this year, it just happens to be the mask I wear every time I go out now that I am on chemo. In this post I will blog briefly about the blue mask.

Since I’ve started chemo I tend to stay out of public as much as possible. My immune system gets trashed by the drugs I’m taking and I have to do everything I can to reduce the risk of catching any viruses or diseases. Of course that doesn’t stop me from going to events my kids are participating in. When I do go out I wear the blue mask.

Wearing the blue mask and being bald definitely makes me stand out. I’ve noticed everyone looking at me while trying to make it seem as if they aren’t looking at me. That really doesn’t bother me. The best is the times I have to go into the school for my youngest sons. When going through the elementary there are some younger children who say hi to me and ask if I am a doctor. That always gives me a smile.

I’ve been in contact with other chemo patients that don’t wear the blue mask. Some of them believe the blue mask does very little or they don’t want attention drawn to them. Personally I think the extra precaution is warranted, especially since it is such an easy step to take in order to protect myself. Actually there has been a lot of cases of pertussis (whooping cough) going around at the schools. I really don’t want whooping cough while my immune system is compromised. So I will continue to wear my blue mask when out in public.

Tonight I will be around my little nieces. While they are dressed in their costumes I will be dressed in mine: a surgeon! I guess I am dressing up for Halloween after all.

My wife thought chemo went differently yesterday

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The wife fretting over me.

Yesterday I blogged about my third round of chemo. Overall I felt it went well, even with my blood pressure dropping quite a bit. My wife Mind however remembers yesterday differently. In this post I will briefly blog about how she though this round of chemo went.

 

First off Mindy agrees that my blood pressure was dropping. But she doesn’t see it as being no big deal. In fact her and one of the nurses were worried a bit because my blood pressure was dropping much quicker than it had the previous two rounds of chemo. My initial blood pressure was 130/68. It was 99/52 the last time it was checked. Telling her this is a known possible side-effect doesn’t make Mindy feel any better. It is just one of the things my poor wife has to worry about while I am on chemo.

Another thing other thing Mindy worried about yesterday was my dizziness. During this round dizziness seemed to be a larger side effect that it had been in the past. Even if I got up slowly to go the bathroom I would experience some dizziness. Mindy said it looked like I was about to fall over and I was very unsteady walking to and from the bathroom. I really think she wishes I would have called the nurse. But I couldn’t see calling a nurse for doing something so simple as walking to the bathroom. Mindy might have been right though…

Finally Mindy mentioned I was not sleeping as hard as I had during the previous two rounds of chemo. The Benadryl definitely knocked me out. But this time she said I would keep sitting forward in my chair and it would look like I was about to tip forward out of said chair. I don’t recall doing this. But I expect I was doing so because my back pain has been getting worse over the last few weeks. The shot I take to rebuild my bone marrow probably has something to do with my back pain getting worse. Sometimes the shots of pain I get are debilitating. But it doesn’t last long at high levels of pain and usually settles down to about a six on my pain scale. Mindy was definitely worried about this happening during chemo and me possibly falling forward onto my face.

I’ve said it before that chemo is hard on my body. It is also hard on my psyche at times. But I think in some ways Mindy is under much more mental stress due to my cancer than I am. It doesn’t help matters that we have a son with medical problem just as bad if not worse than my own. Hopefully I can find a way to reduce some of the stress on Mindy. She really has been a large reason I have coped so well with cancer so well.

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.

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.

First experience with the Neulasta Onpro kit went well

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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.