The bone marrow biopsy experience

Last week I had my after-chemo PET scan done. The hope for that scan was that I would get the news that all the active cancer had been kicked out of my body. Unfortunately there was a spot still lit up on the PET scan. Specifically my left illiac, the upper wing of the pelvis, lit up with possible cancer. Due to this spot my oncologist wanted to do a bone marrow biopsy in orderto find out if this is in fact active cancer, or is something else. In this post I will share my bone marrow biopsy experience.

Just as with any surgery, I started the day by not eating or drinking anything after midnight the night prior. I really didn’t have a problem doing this. The only reason I mention this is because my well-meaning wife decided to skip breakfast as well so she wouldn’t be eating in front of me. This of course made her very hungry later on in the day and I fear her blood sugar may have gotten too low. The stress of my going through this probably didn’t help her disposition either. Hopefully in the future I will be able to talk her into eating breakfast when/if I go through something like this again. Oops, I’m off topic already; back to this post…

The plan

Before the procedure I was able to meet with the oncologist. She explained what would be done. There was actually two possible plans for getting the bone marrow biopsy samples. The first plan was for her to do the procedure and taking a bone marrow biopsy and a bone marrow aspiration. Here is what the Mayo website has to say about these two procedures:

Bone marrow has a fluid portion and a more solid portion. In bone marrow biopsy, your doctor uses a needle to withdraw a sample of the solid portion. In bone marrow aspiration, a needle is used to withdraw a sample of the fluid portion.

My oncologist went on to explain she would be doing this with a needle to punch through the outer layer of the bone in order to get these samples. She would apply a local anesthesia. This procedure was not expected to take very long.

The backup plan

In the event my oncologist was not able to get a sample of bone marrow there was a backup plan. The imaging doctor would be on standby and perform the bone marrow biopsy in the CT scan room. If this were to happen he would also grab a sample of bone along with the two types of bone marrow samples. Spoiler alert, the plan B option does happen. I remember wondering how a procedure could be done by CT scan since there is so little room in the CT machine for me, much less room for someone trying to do a procedure on me. I find out later.

My port worked!

During the last couple rounds of chemo my port only worked in one direction. The port would allow liquid into my body, but would not allow blood to be drawn. A catheter retraction was the root cause of this. When the nurse accessed my port for this procedure she was able to get a good blood draw. It was the hopes of the surgeon that the port catheter would straighten itself out; and it appears that actually happened. Hopefully I won’t have any more port issues going forward! Oops, off topic again…

The first attempt at a bone marrow biopsy

I was wheeled into the procedure room. After getting everything set up and hooking me up to monitoring machines I was told it was time for the procedure. First the oncologist would apply a local anesthesia where she would be performing the biopsy. I was warned this would feel similar to when a dentist applies a local anesthesia with a needle. She is right that the experience is similar feeling, but there was no initial pain like there is when the dentist does it in the mouth. That was one pleasant surprise!

The oncologist then went on to perform the biopsy. I should mention I was laying on my right side with my knees as close to my chest as possible. While this fetal-like position was quite uncomfortable, it gave the oncologist the clearest possible access to my pelvis. The procedure room tech warned me I would feel some “pressure” when the needle was put in. If the pressure became too much, or if that pressure turned into pain, I was told more local anesthesia could be applied. When the oncologist actually put the needle into me I really didn’t feel anything at first. I felt kind of a light and sharp pressure just as I had been warned about. Then the major pressure occurred.

As she was trying to punch through the bone the pressure turned into extreme pain. Of course I didn’t come out and say it like that. Instead I just said “ow, I feel a lot of pressure”. The oncologist backed off and gave me more local anesthesia. She tried two more times to punch through the outer layer of the bone. Each time the pressure/pain got worse. She tried one more time with a different size of needle. This final attempt gave me one of the most extreme pains I remember feeling. Again I didn’t actually come out and say how badly it hurt in plain language. Instead I just loudly said “ow, I am feeling MAJOR pressure!”. At the same time there were tears coming out of the corner of my eyes. The oncologist and tech in the room determined I was actually in a lot of pain from this procedure.

I can’t remember if it was the procedure tech or the oncologist, but one of them mentioned that this procedure is not normally done on someone as young as myself. It felt kind of good being called young at age 45. Normally it is much older patients having a bone marrow biopsy done in this manner. Apparently the outer layer of the bone gets much softer as we get older and much easier to punch through with a needle. The oncologist apologized for the pain she had caused me. All I said was “no worries, it is what it is”.

Looking back I think this procedure must have been pretty bloody. The oncologist apologized to the procedure room tech for the mess she had made and later on my wife saw a lot of blood on me and my gown. This blood had caused my wife quite a bit of anxiety. I think all I said to my wife was something like “no worries, it’s only blood”.

Time to implement Plan B

Sine the original bone marrow biopsy didn’t work, plan B had to implemented. After about a half hour I was wheeled down to the CT scan room. Here I was rolled onto the CT scan table/bed and once again hooked up to machines. During this procedure I had to lay on my stomach the whole time. Looking back I think my only complaint about the plan B is my having to lay on my stomach the whole time. I am a large person and it is very uncomfortable to lay on my stomach for any amount of time, especially for the hour this ended up taking.

Once the staff started taking pictures of the area I was told not to move if at all possible. They especially didn’t want me to move my hip at all. That small instruction became harder as time went on… It seemed to take forever for anything to happen after they took the images. As time when on the pain in my back from being in this position got worse.

After about 20 or 30 minutes the imaging doctor visited me. He apologized for taking so long. The problem they were having is trying to determine just where to take the biopsy sample. The CT scan was not showing any signs of lesions or anything to match up with what the PET scan showed. They had spent the last twenty minutes planning out just where to take the bone marrow sample and the best path to take. At this point I really didn’t care about all these details, I just wanted the whole ordeal done. Looking back I realize I should have been more happy to hear there was no sign of anything in the CT scan, it may be a sign that no active cancer is actually present in my pelvis.

During this procedure the imaging doctor used a local anesthesia as the first procedure had. But he also had me lightly sedated as well. I was not put to sleep, but I was definitely feeling light-headed. When the imaging doctor started the procedure all I felt was a light pressure, there was no pain at all. This was definitely much better than how Plan A went! To ensure the needle was going to the right location the imaging doctor constantly had the tech put me back into the CT machine to take an image. I would then be taken right out and he would continue the procedure. Earlier I had wondered how the doctor could perform a procedure with the in the machine, and I now had that answer. I remember thinking I felt like the bird in the coo-coo clock constantly going in and out of the machine.

At one point I heard the imaging doctor ask for a hammer. Someone in the room then inquired whether he wanted the big or small hammer. The doctor said the small hammer would be sufficient. In retrospect I wondered what the two different hammers looked like. This all happened behind my back so I was unable to see what was going on. It was a weird feeling when the doctor started to use the hammer to break through my bone. It didn’t actually hurt at all. I could just feel a weird vibration going through my bones. And of course I could also hear him hammering. My bones must in much better shape than I though they were since it actually seem to take him a while to break through.

After breaking through the bone I remember going in an out of the CT machine quite a few times. I think this was done so he could get samples in various places within my pelvis. Other than the discomfort from being on my stomach, I don’t remember any pain during this part of the biopsy. After the procedure was done I remember the doctor pressing hard against my back where he had just put a bandage. He told me I had to lay down on my back for three hours before I could go home. At that point I was looking forward to getting off my stomach and was looking forward to laying on my back!

Recovery

Finally I was able to go back to the recovery room. I was so happy to be wheeled back on the bed, since it meant I was once again on my back instead of laying on my stomach. Shortly after arriving my wife was brought into the room. She looked like she had been through more than I had. It is easy to forget that these procedures can be emotionally taxing on loved ones who are waiting what feels like forever as the procedure goes on. And in my case the first procedure had problems and I had to go on to plan B. That whole time she had to sit there wondering what went wrong and why this whole thing was taking so long. I think it took over two and a half hours for me to get through both procedures, an eternity to someone sitting in the waiting room.

Recovery itself went pretty easy. I did eat a small cheeseburger. The nurse offered multiple times to order other food. But honestly eating while laying flat on my back is hard enough and I really didn’t want to eat more until I got out of the hospital. After three hours I was getting kind of tired of being on back, but I just kept in mind this was much better than laying on my back!

When I finally was able to get up the nurse and my wife looked at the dressing. Apparently the area is quite bruised and there is a large blister just under one corner of the bandage. The nurse said to watch that blister when the dressing is removed, as it may come open. There wasn’t a lot of blood in the bandage. But it was apparent to the nurse and my wife that multiple wound sites existed under the bandage.

After getting the normal discharge instructions I was finally free to go. We had been there from 9:30 am to 4:00 pm. A very long day! One I hope not to repeat any time soon.

Now it is time to wait again

During recovery the oncologist had come by to speak with me and apologize for the first procedure not working. I again just said “no worries, it was what it was”. She said it would likely take a week for all the biopsy results to come in and she would see me next Wednesday. The samples would be sent to the lab in Sioux Falls. She also noted some of the samples would go to Mayo Clinic. It was her hope that no active cancer would be found in the samples. It is possible the PET scan showed extra activity in my pelvis because it was recovering from chemo. In researching PET scans I have found it is quite common to get false positives for a variety of reasons. She also reiterated the fact that the PET scan showed no activity in the rest of my body. If this biopsy comes back good I am free of any actual active cancer. Now I just have to wait a week to find out the biopsy results!

No all clear after chemo, bone marrow biopsy tomorrow

Last week I noted I would be going in for my after-chemo PET scan. I wasn’t really worried about this particular scan. The mid-chemo scan showed a lot of progress and I expected to get an all-clear during this scan. It never even occurred to me I would still have something show up in the scan. Well something did and I go in for a bone marrow biopsy tomorrow to find out the details.

On Wednesday of last week I had the PET scan. Just like the previous two PET scans, this one went fine. This one seemed to take longer than the previous two. But then I’m 6’3″, so my PET scan takes longer than people of more average height. When leaving the hospital I put the PET scan out of mind since I was unlikely to see any results from the scan until the next week.

On Thursday morning my oncologist called me right away. She let me know that she had reviewed the scan already and that there was still one area lit up on the PET scan. It was in my pelvis and she wanted to do a bone marrow biopsy in order to determine more about the spot. I agreed this was the right thing to do. She then had her nursing staff cancel my doctors appointment for the following Wednesday and instead setup a surgery appointment. As I write this, the bone marrow biopsy surgery will occur tomorrow.

I wanted to blog about this right away. But each time I sat to blog about this situation I was unsure of how I felt. Part of me was happy that most of my body is clear of active cancer. But after six rounds of R-CHOP chemo I was feeling somewhat disheartened to hear I was not in total remission. The final two rounds of chemo were particularly hard on me. Hearing that I still had active cancer after going through chemo really made me question whether I can actually fight this cancer off. I haven’t given up, but I definitely had a few days of being down.

On Monday (yesterday) my online chart showed the notes from the doctor that reviewed my PET scan. I can’t see the actual scan images until I visit the doctors office, but the notes can at least let me possibly know a little about what is going on. Here is one of the notes from the scan:

2. There is a new hypermetabolic focus in the left iliac bone compared to prior study. This is commonly seen if the patient has had a bone marrow. However, if the patient has not had a bone marrow aspiration in this area further evaluation would be needed.

With the help of google I was able to determine the “iliac” is the top wing of the pelvis. Further on in the notes it also states the previous PET scan showed no activity in this region.

Seeing the doctors notes probably didn’t give me any truly helpful information to process what is going on with my pelvis. But I still am glad I was able to read the notes. Here is the first note listed:

1. No evidence of metabolically active disease noted. The study is similar to prior PET/CT 11/7/2018 consistent with level 2 disease on the 5 point system.

If it hadn’t been for this new spot in my pelvis I think I could have said I was in remission.

Tomorrow I will go in for the bone marrow biopsy. Hopefully this is much to do about nothing. But if this is something, meaning cancer, I guess I’ll just keep moving forward and work with my oncologist to figure out the next treatment plan (as long as it isn’t R-CHOP).

PET Scan and Sleep Study today

Today is a pretty busy day for me medically speaking. This afternoon I will have my third PET scan done. Then overnight I will be at the hospital for a sleep study. I hadn’t really wanted both items on the same day. But the sleep study was order weeks ago and the PET scan can only be done in Aberdeen on Wednesdays.

Back in November I had my second PET scan done. At that point I had completed three rounds of R-CHOP chemotherapy. It appeared at that time that the active cancer had been pushed into remission in my lymphatic system. Only my bones showed active cancer in that scan. Since that time I have completed three more rounds of chemo. The hope now is that no active cancer is present in my bones. Either way though my oncologist decided six rounds of R-CHOP chemo was sufficient. For that I am very thankful. I’m not sure how I would have been able to do the additional two rounds of chemo that was possible.

I won’t be able to see the actual PET scan until next week, when I meet with my oncologist. The notes from the scan will show up in my chart that I can view online. But that really isn’t the same as seeing the actual scan. The first time I had a PET scan done I had a lot of anxiety. This time I am calm and just looking forward to seeing if the chemo worked as expected. I know it is unlikely I will see a major firework show on this scan, so I really don’t see a reason to be nervous. I’ll just have the scan done today and wait until next week to see the actual images. At that time I am also likely to have a bone-marrow biopsy scheduled.

The second medical endeavor today will be a sleep study. This was ordered by a pulmonologist I saw a couple months ago. I have a long history of breathing and sleep issues. When meeting with the pulmonary doctor it was determined I should have a formal sleep study done. I’m not really looking forward to spending the night in the hospital with a bunch of wires hooked up to me. But if they can find something out and help me get some sleep I guess it will be worth it.

I’m not really nervous about either the PET scan or sleep study. Whatever is found (or not found) can be dealt with moving forward. I do however wish both of these didn’t end up being scheduled on the same day. But it is what it is.

The boys have really stepped up

The boys and I this Christmas.

One of my favorite things to be in life is a dad. That is one of the reasons I call this blog Dad Against Cancer. They may not believe it, but almost everything I do is to somehow make their life better. Part of my motivation to kick the cancer out of my body is so I can keep spending time with my boys and the wife. I have a feeling they want to keep me around for a while as well. In this post I will highlight a few ways the boys have stepped up to help me get through chemo.

First and foremost the boys have adjusted their home life to accommodate my needs. The boys wash their hands on a regular basis and use hand sanitizer to ensure I don’t catch a nasty virus when my immune system is low. This may seem like a small thing. But it can sometimes be a pain to get kids to do things like wash hands. The boys now do this without even being told. If they do forget and the wife or I have to remind them, they do it without a huff. Little things like that show they are taking my health serious.

Another thing done by the two younger boys, Lawson and Ashton, is to open doors for me in public. When we go out in public I try to avoid touching doors or anything that a lot of other people may have touched. Yes I do keep hand sanitizer with me, but it is much easier to just avoid touching things when the boys are helping out. In the few times we have gone shopping while I’ve been on chemo, the boys will push the cart and load it up with what I tell them. They even somehow have found a way to do this without fighting or hurting each other with the cart (well mostly, they are boys after all).

Over Christmas break my oldest son really stepped up. He is now back from college and has been transporting his younger brothers to school, basketball practice, band practice, and various other things. These are activities I love to do myself. But the last two rounds of chemo really brought me down physically. Dustin stepping up to cover for me helps more than he will ever know. During all this he also made sure I was fed. I am very proud of that young man!

There are many other things the boys have done to help me out. But I think the above examples show some of what kids of cancer patients have to do. I am dang proud of those three boys and hope to be around for many years so I can meet and be proud of their children some day.

Round six of chemo done, yes I’m still blogging

Last round of R-CHOP chemo done!

It has been a few weeks since I have been able to blog. As I mentioned in my last blog each round of chemo has hit me harder. Round six was no exception to this trend. But I do have good news, I am now done with my R-CHOP chemo! And now that I am past the hump created by my sixth round of chemo I can get back to regular blogging again!

Last week I had my sixth and final round of R-CHOP chemo. The oncologist met with me prior to my round six chemo injection. She had determined based upon the PET scan I had done after round three and other factors that going past six rounds of chemo would not be necessary. I was so happy to hear this news. The fifth round of chemo had really beat me down and the thought of having three more rounds seemed impossible. She did mention however that I would have another PET scan and have to get a bone-marrow biopsy done to ensure the cancer is gone from my bones. If there is still active cancer in my bones she will come up with a plan of action based upon the PET scan and biopsy results. I am more than happy to move on from R-CHOP chemo and possibly on to other treatment options. Although honestly I just hope the R-CHOP kicked the cancer out of my bones and I can just start my two years of maintenance injections.

After the oncologist gave me the good news I had my sixth and final round of R-CHOP chemo. As with the other times receiving chemo I don’t remember much; the Benadryl really did a number on me. Recovery from this round of chemo has been particularly hard on me. For the last week and a half I feel like every part of me has been on the losing side of a boxing match. My energy levels were also at all-time lows. The few times I had to go out and see anyone in public I would use an energy drink and put every bit of energy into seeming normal. Such outings would leave me completely without energy for a day or so. During that time my wonderful boys really stepped up and helped me any way they could. I could not be more proud of them!

Yesterday I finally felt half-way normal. To celebrate I spent the afternoon ice fishing. Again the boys really helped me by getting my stuff out to the ice and helped me bring it back to the house afterwards. I didn’t catch any fish worth keeping, just a dozen or so perch that really weren’t big enough for anything. The lack of catching bigger fish really didn’t bother me though. I was just happy to get out of the house.

Today I feel even better. For the first time in a few weeks I actually feel good enough blog again. I plan to take a trip up north to help move my oldest son. Even though I won’t be much help in actually moving his stuff, I can still drive my pickup to help him out. Hopefully this upward trend can continue! And hopefully I don’t overdo anything; as I really do get tired and wore-out very quickly.

I’ll end this post here. This post was really about getting an update out there about my status. Also I wanted to ensure everyone knew I was still blogging. Actually I have the topics for dozens of blogs ready to go for this year. I just needed to energy to start blogging again. I appreciate the many messages I received during the past few weeks asking if I was OK. It never occurred to me that a lack of blogging by me would even be noticed. Again, thank-you to everyone out there for the support.

Bonus song!

Now that I’m feeling better I can’t get this classic from Robert Earl Keen out of my head.

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.