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.

portretractedj

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.

Fighting brain fog with games

linkapix
Link-A-Pix has become my favorite game to battle brain fog. 

Last month I did a post about brain fog. As I said at the time, this is probably the absolute worse side-effect of cancer for me. There are days, such as yesterday, the brain fog will leave me unable to write on my blog or on one of many books I am trying to finish. Even today the fog was a little bit thick. Luckily I have found a way to clear up the fog, at least on most days. Clearing the fog is usually just a matter of playing some word and logic games.

Today is a good example of how playing games has helped me. This morning I woke up at my new normal time of about four in the morning (sleeping issues are getting worse). In the past I would use these early mornings to write a post or do some research on a book I hope to finish. Over the last couple of months I have found it almost impossible to get words to form in a way that makes sense. Today is no exception. So what I had to do was spend about two hours playing word and logic games. I then brought my youngest son to physical therapy and came back to play another hour of games. Finally I was then able to sit down and write. I actually finished off a chapter in a book and now I am writing this blog post. Just a few hours ago this would not have been possible.

I have spoken with other writers who ask me if this isn’t simply writers block. No, in my experience this is nothing like writers block. It is much worse (although both are frustrating). My traditional method for fighting writers block is actually to stop using my mind, such as by watching a cheesy sci-fi movie. That method does not work against brain fog at all for me. It is my guess that whatever causes brain fog uses a different part of the brain from what causes writers block.

The games that work the best for me are those which require some concentration. On my PC I bought a game called Puzzler World through my steam account. This game has been great for battling brain fog. It includes traditional games such as word find, crossword, sudoko, fitword, and many others. Actually my favorite game in this collection is Link-A-Pix, a game I remember enjoying as a child. When I’m not around my computer I have a few physical books full of these same games.  My wife was wonderful enough to buy them for me. These types of games are widely available on the internet for free. I would recommend anyone suffering brain fog to give this approach a try.

Reading this you might have noticed I spent a couple of hours playing games this morning. Then I went and played for another hour later in the morning. It seems the fog won’t lift right way. Usually after an hour of game-play the fog lifts enough for me to regain my mind. But on some days, such as today, it can take two or three hours of games. I don’t know why it takes so long, but it is what it is. Of course on other days playing for a half an hour will lift the fog. I have yet to figure out any rhyme or reason to the brain fog; other than the fact that it never seems to go away on its own.

Hopefully this post will help other cancer patients find a way to possibly fight against brain fog. It might seem like a waste of time to sit around playing games for a couple of hours; but it is still more productive than being unable to do anything at all. Speaking of which, I think I’ll check out a Link-A-Pix game I found online.

 

Bonus Song

I couldn’t get this song out of my head while writing this post. I was more into hair metal back in the 80s, but despite that I’ve always like this song. I’ve somewhat changed the lyrics in my head to: One night of brain fog, and the tough guys crumble.

Fighting depression with music

It’s Friday! That means I do a multimedia Friday post. Earlier this week I participated in a teleconference support group for blood cancer patients. One of the topics discussed was what people do to try keeping depression away. I don’t think I’ve suffered too much from depression, but I have felt it creep in at times (especially this week when my sons muscle condition is getting worse and I fear I will lose a couple more teeth). The best way I’ve found to keep depression away is with music. In this post I will share some songs that help keep my depression away.

Now there are a lot of inspirational playlists out there. Those are fine and dandy. But I have found what works the best is to create a playlist with songs that have personal connections. I tend to use songs that help me remember an event or period of my life that brings back good feelings. I also make sure I don’t keep playing the same song; that way I don’t get caught in a different type of depression hoping for those times to come back. I actually have a lot more than five songs I use to keep depression at bay, but I thought I would keep this post somewhat short.

Jackson Browne – The Load Out and Stay

Not only is my first choice just a beautiful song, it has a personal connection for me. Back in the 90’s I was stationed in Bad Kreuznach, Gernmany. My unit was being deployed to Bosnia as part of Operation Joint Endeavor. We used trains to get our equipment to Hungary, and then rolled into Bosnia. The day we loaded up the trucks and equipment on the rail flatbeds I remember singing this song with a group of other soldiers. I vividly remember each of us taking a turn trying to sing the high part in Stay. We probably sounded ridiculous, but it was great fun. That has always been a vivid memory for me; and this song always brings back the fun we had that day.

Thin Lizzy – Whiskey in the Jar

This might seem like an odd song to fight depression, but it ties back to a series of memories from my army days. There used to be an Irish pub some of us would hang out at to drink beer (Kilkenny was my choice), shoot darts, and often we would sing this song. Those were some great nights!

Bob Seger – Travelin’ Man/Beautiful Loser

I consider the Travelin’ Man part of this duo to sum up how I lived life in my 20’s. I went all over and have some great memories from this time-period. But when I hit my 30’s I was finally ready to settle down, but it was hard. I just had to realize I didn’t need it all. For some reason this song always makes me feel good about the things I’ve done to get to where I am now in life. Plus I happen to be a huge Bob Seger fan.

Warren Zevon – Frank & Jesse James

I happen to think Warren Zevon was a genious, and could have made a playlist of just his songs. But this one particular lifts my spirits because it reminds me of my little boys. Actually I often call them Frank and Jesse if they are getting into some sort of trouble, which brothers tend to do. Plus I always found the chorus “keep on riding, riding, riding” to be inspirational. I’ll play this song and remember some of the adventures the boys have had and can’t help but smile.

Waylon Jennings and Willie Nelson – Good Hearted Woman

I believe I have the best wife and love her to no end. But looking back I’m not sure how she stuck with me in the early part of our marriage. I was constantly traveling, working, and generally doing anything but being around for her. Those times have changed, and luckily she put up with some of my Travelin’ Man days carrying over into our marriage. This song reminds me of how lucky I am to have her!

Bonus Song – David Allen Coe – You Never Even Call Me By My Name

I’ve always like this song, but lately it has been upgraded to one of the songs that helps to keep depression away due to the cancer. David Allen Coe sang this song to throw a big finger at the country music industry that shunned him. I like to sing along with this song and pretend I’m giving a big finger to the cancer going throughout my body. Plus I think the last verse of this song is danged funny.

Bonus Bonus Song – D.A.D. – Laugh N A Half

I knew I wouldn’t be able to keep this to five songs… or even six. This last track comes from the Danish band D.A.D. and it has always touched me. I really use this song to keep in mind that I don’t have to worry about how others treat or perceive me. Plus I’ve always love the lyric: “When think about things I’ve done, I laugh out loud to no one, yeah to no one”.

My port catheter has retracted. Huh?

This week I had to visit my surgeon due to a retracted catheter coming from my port. It ended up not being a big deal. But I will have to keep an eye on it in case the surgeon has to do a repair. In this post I will share how I found out about the retracted port and my experience to figure out what the heck that even means.

My current adventure began last week; specifically on Tuesday, November 22, when I went to see the pulmonary doctor. Actually this adventure really started a few months ago I had been referred to a Pulmonologists for my breathing problems (some of which are documented here). I had to wait a few months in order to see the pulmonary specialist. Of course in the meantime a CT scan found my windpipe was being restricted by a lymph node. Additionally, just a few days after my first round of chemo the lymph node pushing on my windpipe had shrunk and allowed me to breathe again (hallelujah!). Even though my breathing was better I decided not to cancel the appointment with the pulmonologist. I still have some breathing problems, sleeping problems, and questions about how my lungs will recover from the cancer that spread into one of them.

The appointment with the pulmonary doctor actually went pretty quick. He looked at what was done so far and wanted to start off with a sleep study (which I’ll do in a about a month or so) and an X-Ray. After those steps are done he will decide what more should be done about my breathing problems. Thinking back I completely forgot to ask him about the effects of the cancer on my lung; oh well, I’ll save that for next time I see him.

Later that afternoon the nurse called me back to let me know the x-ray had come back looking good. Fluid that had been in my lungs in the past was gone. That was good news. All I had to do now in regards to the pulmonary doctor was wait to have my sleep study. It never occurred to me that having an X-Ray would lead to a visit with another doctor.

Late Friday of that week the results of the x-ray were released to my online chart. I don’t actually get to see the scan, but I can view the lab tech notes. Out of curiosity I decided to log on and review these notes. Here is part of what I saw in the impression section:

1. The catheter of the right chest wall port has retracted and the tip now projects in the region of the confluence of the right IJ vein and innominate vein.

Huh? My catheter had retracted? I couldn’t help but wonder what that meant. It sounded potentially bad. The catheter being referred to in the notes goes from the port just under the skin on my chest, up into the jugular in my neck, and down to just outside the heart. It is through that port and catheter that I receive my chemo treatments. I began to worry that a problem with my port would cause a problem with my chemo IV infusions.

I did try calling the oncology office, but it was late and they were already gone for the day. So I set up an appointment to speak with the surgeon who put in the port. There were problems with my port install originally, so I though it would be best to hear from him what was going on. Plus I like the surgeon. He knows how to explain things to people who don’t have a medical degree (something not all doctors are able to do).

On Wednesday of this week I had my appointment with the surgeon. I am glad I chose to speak with him. He was quickly able to reassure me there wasn’t a major problem. To explain the retracted catheter he first showed an x-ray of my chest that had been done about a month and a half ago. Below is my attempt to draw what I saw on this x-ray.

port

The triangle is the port, which is just under the skin on my chest. Connected to the port is the catheter. It runs under the skin up to the base of my neck, where it enters the jugular and travels to the heart. The surgeon said in this x-ray the port and catheter look exactly like they are supposed to.

Below I have attempted to draw what I saw on the new x-ray.

portretracted

This x-ray shows there is a loop in the catheter between the neck and heart. The formation of this loop means the catheter is no longer right next to heart. Or in medical speak it is apparently “retracted”.

The surgeon noted catheters can retract, but he hadn’t seen one retract this far before. It could have been caused by scar tissue. We also talked about whether my lymph nodes shrinking had caused issues. I had a LOT of lymph nodes in my chest which had grown large and hard due to the cancer. When those lymph nodes shrunk the very topology of my body would have changed. It’s possible we will never figure out exactly why the retraction occurred.

Of course then I asked what had to be done about it. He noted the catheter did not appear to be pinched at all and it should work fine. If needed he can do a simple procedure to straighten out the catheter. Basically that would mean a small incision by the port, where he would stick a wire down the catheter to force it back into its original position. Even though that would be a minor procedure, he really didn’t want to do it while I’m still in chemotherapy. The surgeon also noted that when my port gets flushed during the next round of chemo the catheter may be forced to straighten out. He didn’t think that was likely, but it is possible.

In the short-term the surgeon said we wouldn’t do anything about this retraction. If problems with flow are seen during chemo then he would fix it. But if the chemo IV flows fine he would rather wait and do an x-ray in six months to see how the catheter looks then. In the short-term he said a retraction such as this really isn’t a big deal. However over the long-term, such as ten years, if I am still using the same port he will want it fixed sooner rather than later. He explained that as times goes on the bend in the catheter’s rubber could begin to degrade and cause a leak. It really depends on how long I will keep this port and catheter in. Right now I have one or two months of chemo left, plus two years of maintenance infusions. Hopefully after that this port comes out.

I guess I am back to my rambling ways as this post went longer than planned. In this post I shared my experience of finding out about a retracted catheter. More importantly I shared my experience learning what the heck a retracted port even is. Its times like this I miss the days when I would go years without seeing a doctor.

Lymphoma is a real cancer

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The lymphatic system runs throughout the whole body. It is very real!

I have cancer, hence why I am writing this blog. My actual diagnosis is Grade 2 Follicular Lymphoma, a type of non-Hodkin’s lymphoma. Even before I knew what all of that meant I thought it sounded bad. Over the last couple of months I’ve come to find out that some other people don’t think it sounds as bad as it is. I will expand upon that in this post.

I should mention the origins of this post actually came about due a support-group conference call I was on earlier this afternoon. A group from Illinois invited me to attend their teleconference and speak about my experiences blogging. I enjoyed the chance to interact with other cancer patients and hear other stories. One topic that came up during this teleconference was dealing with people who perceive blood cancers, especially lymphoma, as a “fake cancer”. This wasn’t the first time I’ve heard the term. Actually it comes up a lot in various support groups. Blood cancer patients, again especially lymphoma patients, are often treated differently from other cancer patients. It is an odd occurrence I probably would not have believed if I hadn’t seen it first hand.

One of the problems I believe is that the average person simply cannot relate to lymphoma. Lymphoma is categorized as a blood cancer, but it is the actual lymphatic system which is infected with cancer. How many people (other than doctors) actually know what the lymphatic system is or what it does? I’ve come to find out very few people do. When people think of cancer they think of breasts, lungs, prostates, or some part of the body that can be identified. I’ve had people give me blank stares when I told them I had multiple lymph nodes which had become swollen due to cancer. Actually more than once I’ve had people say “oh you have one of the good cancers” when I try to explain my condition. Every time that leaves me silent. I still haven’t come up with a good response to that. But I remember most people really don’t know what the lymphatic system is and they really don’t know how to relate.

Another problem is that most lymphoma patients, including myself, usually look pretty good. Even after four rounds of chemotherapy I have had multiple people tell me I look great. All of my pain and scars are on the inside. There aren’t any scars or physical signs advertising the fact that I have anything major going on with my body. Actually in my case I probably look better than I did prior to starting chemo due to the lymph node that was restricting my breathing. Now that I can breathe again I’ve been told my color looks better than it has in months. Unless I tell people that every bone in my body hurts, especially my shoulders and lower back, they don’t realize I even have any pain. I do a good job of trying to hide that pain.

I have found a way to get more people to understand I have a “bad” cancer. All I have to do is say the cancer has spread to my bones, which it has. Actually that is probably what is causing most of my pain. As soon as I tell people the cancer has moved into my bones they will say something like “oh my gosh, I’m sorry” or “oh wow, you really do have a serious cancer”. Like I mentioned above people need something to relate to, and bones are definitely something people have heard of.

Don’t get me wrong, I am not writing this post to complain. I do think my situation could be a lot worse. But I think it is important to let other lymphoma patients know they are not alone in how their diagnosis is perceived by some people. I really don’t think any of the people acting as if lymphoma is a lesser cancer are trying to downplay the cancer. Instead I think they have problems relating to the type of cancer we have so instinctively assume or hope it is better than other more well-known types of cancer.

Friends and family playlist

109192289It is multimedia Friday time on DadAgainstCancer! Since I wrote a post yesterday about giving thanks for my friends and family I thought an accompanying playlist would be in order. Actually one of the songs in this playlist made my Dealing with Cancer Playlist a month ago. Hopefully these songs will help others understand how important family and friends are!

Joe Cocker – With A Little Help From My Friends

This is the song that actually made my last playlist as a bonus song. For this playlist I decided to share the Woodstock version of the song. I really wish I could have been there! Of course the fact this concert happened a few years before I was born kind of killed my chances of making that great venue. When I’m feeling down I really love to crank the Joe Cocker version of With a Little Help From My Friends and my head often clears up. (and yes I’m a Beatles fan, but Cocker took a great song and made it epic!)

Queen – You’re My Best Friend

This song is what goes through my head when I think about my wonderful wife. I can’t imagine going through my cancer diagnosis and treatment without her.

Ooh you make me live
Whatever this world can give to me
It’s you you’re all I see
Ooh you make me live now honey
Ooh you make me live

Randy Newman – You Got A Friend In Me

“Stick together, we can see it through”. What great lyrics! This a live version of the song, not the version from Toy Story.

Bill Withers – Lean On Me

This is the original Bill Withers version, and not the Club Nouveau version I often hear on the radio. Actually there are a lot of good lessons in this song. I have to remember the following lyrics when I need to reach out for help.

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you won’t let show

Montgomery Gentry – My Town

This is a song that comes to mind when I think of how great my neighbors have been. I may not have grown up where I currently live, but I get the same feeling as this song describes when I think of how supportive my neighbors have been.

The Animals – Don’t Let Me Be Misunderstood

This song actually comes to mind after I have some steroid rage from the Prednisone.

Oh, oh, oh, baby – don’t you know I’m human
I have thoughts like any other one
Sometimes I find myself, Lord, regretting
Some foolish thing, some little simple thing I’ve done

Hank Williams Jr – Family Tradition

I think of this song when I think of how different yet almost the same I am as my parents…

 

Giving Thanks

19919789It is Thanksgiving today in the United States. Despite my diagnosis of non-Hodgkin’s lymphoma and going through chemotherapy treatments I feel there is a lot to be thankful for. Wait, make that because of what I am going through with cancer I know I have a lot to be thankful for. Going through cancer has made me appreciate just how good the world is and how great the people in it can be.

First I am thankful for my great neighbors. I have multiple neighbors who have offered to help around the house, have brought meals over, and a multitude of other things. I am truly thankful for these wonderful neighbors. Plus I think it has given my wife peace of mind knowing that as I sit at home recovering from chemo that any number of neighbors are a short call away in case she is unable to get a hold of me for some reason. Having good neighbors really reduces the stress on her.

Next up is friends and acquaintances. Sometimes in life it feels like I don’t really have a lot of friends. I’m sure a lot of other parents can relate to the fact that it is hard to have a lot of friendships when you are constantly traveling for kids sporting and school events. During times like this when I have cancer I found out how many people are willing to step forward and offer help. So many people have offered to help that I actually lost track. Even though I have not taken most of them up on their offer to help, I truly appreciate the fact they made the effort to help me and my family during this time.

Family has always been important to me, even if I never let them know. Both my family and my wife’s family have gone above and beyond to help us get through my cancer treatments. My wonderful mother-in-law has brought me meals while I do my chemo treatments and a brother-in-law has been there for me twice during chemo when my wife was unable to be there. My brothers and parents have helped just by being themselves and supporting me. I am truly blessed with family.

I am also thankful for the greatest wife in the world to help me get through my cancer treatments. Mindy is truly my soulmate and I don’t think I would be as mentally strong through this experience without her support. I only wish I could do something to reduce the stress on her. She really deserves a break.

Finally I am thankful for my boys. With my being on chemo the boys have had to put up with some major changes. They have handled these changes better than I believe many adults would. The boys have also stepped up to help me when they think I am overdoing it. My wife and I are truly blessed with great children.

To anyone reading this I would ask for you to think of those in your life you are thankful for. It is easy to get depressed or overwhelmed when going through cancer and/or chemotherapy. Instead of focusing on the negative aspects of cancer, I would urge everyone to stay positive and focus on people who are there to support you.

The ups and downs of Prednisone during chemo

shouting man
Steroid Rage!

Chemo is hard on the mind and body. That almost goes without saying. But it isn’t just the chemo drugs that wreak havoc, some of the other drugs taken by chemo patients can have some major side-effects. In this post I will write about one of those drugs: Prednisone.

 

I am on a chemo regiment called R-CHOP. The “P” in R-CHOP stands for Prednisone, a type of steroid typically used for its anti-inflammatory properties. As part of R-CHOP Prednisone is actually used because it can “stimulate programmed cell death” in some cancer cell types. During the beginning of each three-week chemo cycle I take 100mg of Prednisone each day for five days. Since it is not an actual chemo drug, I really didn’t think it had any side-effects I would have to watch out for. Boy was I wrong.

When I first began chemo I noted Prednisone made me very hungry. This is still very much true. Unlike many chemo patients I have not lost any weight since starting treatment. Actually I am almost twenty pounds up since I first began chemo. The constant hunger during the week I am on Prednisone is basically insatiable. I won’t really complain about this side-effect too much. Recently I have found through smart diet and getting exercise I can counter-act the weight gain. After I’m done with chemo (and Prednisone) I’ll worry about losing those pounds I gained.

A side-effect of Prednisone I will complain about however is the mood swings. One moment I will be watching a movie and almost in tears because a character in said movie died, and the next moment I will feel great rage because my boys are fighting about nothing again. When I feel that great rage I have been trying to walk away. The boys are brothers, and they are going to fight. My yelling at them in a steroid rage is not going to do any good at all. It is hard to walk away though. When I get this great rage it feels like I have to let it out. Shortly thereafter I will find myself going to the boys and apologizing. They don’t know why I’m apologizing, other than the fact I’ve told them some of the drugs I am on for chemo can make me act strange. The wife and kids have been great about putting up with the mood swings during chemo week. Hopefully they will continue to understand and be patient for the next couple of treatment cycles.

While the mood swings from being on Prednisone is bad, it’s the withdrawals from the steroid that really gets to me. On Sunday of this week I finished my fourth cycle of Prednisone. During the days I am on Prednisone I actually feel pretty dang good (except for the mood swings). However the couple of days after no longer taking Prednisone I crash hard. The day after I start to feel weak with aches and pains cropping up all over my body. This gets worse for about two days. Yesterday, Tuesday, I felt so weak and sore that all I wanted to do was curl up in a ball and ignore the world. I don’t know if these symptoms are truly from withdrawal. It could be that the anti-inflammatory properties of Prednisone hide the aches and pains while I am taking the drug. Either way I feel like I’ve been hit by a truck for a couple of days after I’m done with the Prednisone.

I’ve spoken with other chemo patients who have similar experiences after coming off Prednisone. One person I spoke with had their oncologist prescribe something to taper down the withdrawal. I don’t really think this is necessary for me. Hopefully I only have two cycles of chemo left and feel I can cope with these symptoms now that I know about them.

One of the chemo patients I’ve spoken with also noted she experiences depression for a couple of days after coming down from Prednisone. I don’t think I experienced depression, but its hard to know. I definitely feel emotionally “down” after coming off Prednisone. If that counts as depression it is hard to say. This down feeling goes away after a couple of days. In fact today, Wednesday, I feel pretty upbeat and the emotional side-effects of Prednisone appear to be gone.

With only a couple of rounds of chemo left I won’t worry too much about the side-effects of Prednisone. I mostly shared my Prednisone experience in this post so other chemo patients suffering side-effects from the steroid know they are not alone. It is also my hope that friends and family of chemo patients suffering side-effects from Prednisone will get an understanding of what those patients are going through.

A special Monday song

Like many cancer patients in the modern world I am part of support groups on Facebook. In one of these groups a truly marvelous individual just lost the battle and has passed on. Instead of doing a normal blog post today I thought I would share a song written and performed by this individual. I never really got the chance to know him. But this song really hits close to home.