Dealing with constant tests and procedures

Some days I feel like a pincushion.

One aspect of having cancer is dealing with constant tests and procedures. Even being in remission does not seem to slow down the constant scans, blood draws, and incisions. Actually if anything it appears to be worse after chemo has stopped. In this post I will briefly share my experience dealing with the constant tests and procedures.

It seems the doctors constant want to scan or poke me

Prior to getting cancer I would rarely go to the doctor. Like many people I really don’t like going to the doctor unless I really need to. People like me tend to get somewhat overwhelmed once we have cancer and have to make constant trips to the hospital and clinic.

During chemo I was obviously at the hospital a lot. But even after chemo was completed I have had a lot of visits to the clinic to have scans or be poked. Below is a list of visits to the hospital and clinics I’ve had over the last six months since completing my chemo. Each of these visits was for a scan or to be poked.

  • PET scan to ensure I was in remission
  • Bone marrow biopsy
  • Second bone marrow biopsy due to the first one not working
  • X-Ray of chest due to breathing issues
  • X-Ray of neck/chest to see why port was not working
  • Ultrasound of neck to check on growth on neck
  • Biopsy of neck to check growth on neck
  • X-Ray of teeth due to abscessed tooth
  • Extraction of two teeth
  • Overnight sleep study at hospital
  • Second overnight sleep study at hospital
  • X-Ray of chest again for breathing problems
  • Ultrasound of lump on shoulder
  • Removal of large lump on shoulder
  • Removal of stitches from shoulder surgery
  • CT scan of chest and CT scan of abdomen to ensure I’m still in remission

The above list is the test and procedures I can remember off the top of my head (my hospital chart app won’t let me log in right now to see what ones I’m forgetting). It does not include the many doctor visits dealing with those tests and procedures. The list is also missing the maintenance infusions I receive every eight weeks (today happens to be another maintenance infusion day).

Not wanting to tell the doctor when something new comes up

All of these scans, tests, and procedures tend to get overwhelming. It has gotten to the point where I become very apprehensive about mentioning any new symptoms or issues I am having. I’ve spoken to many cancer patients who feel the same way. Just one little comment or question seems to lead to a new scan or procedure.

It’s not that I don’t understand that these scans and procedures are important. I really do. But nonetheless they do become overwhelming. It feels as if I spend more time at the clinic and hospital than I do spending time with my kids.

Stress added to family

It is not only me who feels additional stress from these constant tests and procedures. This spring my wife had a heart attack for the second year in a row. There are many factors in her hear condition, and stress is obviously one of those factors. Having to bring her husband to constant tests and procedures increases the stress upon her. Then of course there is the stress she feels waiting for the results of each test. I would say it is probably even more stressful for her than it is for myself.

My kids also have additional stress added to their lives with these constant tests. The boys try to hide any worry they have. Yet I have noticed they get more clingy and attentive after I’ve had procedures done. As a parent I can tell they are worried and trying their best to help me. I truly feel bad about putting so much stress on my boys, especially the younger ones.

Things likely won’t change

As I conclude this short post, I can’t help but feel things will not change going forward. I’ve spoken to many patients who have lymphoma spread throughout their body and bones like I have. For many of them the constant tests and procedures never slow down once remission has been reached. A large part of me feels I will be one of those patients that will constantly be visiting doctors until the day I die.

Don’t get me wrong though! I am very happy to be alive and will do what I need in order to remain alive. But that doesn’t change the fact that the constant scans and procedures are wearing me down.

Today’s Song: I don’t need no doctor!

For today’s song I go back to a classic track from Humble Pie. This song often goes through my head when I get tired of the constant scans and procedures. The song also reminds me of how much I really just want to be with my wife.

Bonus Track: Under the Blade

Today’s bonus track goes back to the 80’s with a song from the hair metal band Twisted Sister. This song is a bit heavier in style than what I normally share on this site. But the song has to do with dealing the anxiety of going into surgery (and not about suicide as it had been wrongly accused of back in the day).

The biopsy

21063833It is time to continue documenting the diagnosis phase of my cancer. Yesterday I published a post about the CT scan and some new symptoms I was experiencing. Todays post will focus upon the biopsy. It seems almost odd getting to this point of the diagnostic blog posts, because that means I am very close to getting caught up to real-time and being able to share my first chemo experience. But I plan to stay focused for now and will continue on with the diagnostic phase.

In the last post I left off with my general physician revealing the results of my CT scan. Basically I had “several” swollen lymph nodes and other organs with possible issues. My GP had already spoken with a radiology doctor about my case. It was Tuesday, August 21, when my GP let me know the radiologist would likely set me up with a biopsy for that Thursday. Sure enough I got a call from the hospital scheduling the next morning for a biopsy on Thursday morning. It seemed to me as if things were suddenly going fast.

There was some miscommunication going into my procedure on Thursday. My biopsy was not scheduled until later in the day, so I thought it would be OK to eat breakfast. Nobody told me I couldn’t, and since this biopsy was being done on a large lump sticking out of my neck I didn’t think it would be a big deal. I was wrong. I now know going forward that I should clarify such things. Since I had breakfast the radiologist decided I would not get a general anesthesia and instead would only get a local numbing agent of some type. That ended up being sufficient and was no big deal. But it could have been a big deal and worth remembering.

Just before surgery I met the radiology doctor who would be performing the biopsy. This was another surprise to me. I had no idea radiology doctors actually performed surgeries. This doctor was not just a radiology specialist, but also a Interventional Radiology specialists. I had assumed it would be a surgeon doing the procedure with the help of a radiologist.

The radiology doctor let me know I would be having a needle biopsy of the lump on the left side of my neck. Basically this meant he would use a needle to remove several samples from the lump. I was scheduled to have the surgery done in the CT Scan room as it would have to be done by imaging since the neck was such a precarious place to poke around in. Here again I was surprised. I figured that since I had a large lump sticking out of my neck that he would just stick a needle in and take some samples. Nope, apparently the neck has a lot of nerves, vessels, and other stuff going through it and even a lump sticking out could be hard to safely reach. He also let me know there would be an ultrasound machine there. They would try using that before the CT scan to perform the procedure.

I was then wheeled to the CT Scan room. The room was not yet ready for me. For the next half hour or so I sat there on the table as the doctor and other people involved in the procedure set everything up. The ultrasound tech setup her gear and immediately started to take pictures. I was able to see first-hand just how much of mess it would be to get to the lump. Between the radiology doctor and tech they did find a good route to the lump from a couple of inches away toward the back of my neck. Again that surprised me, they would actually have to go partway through my neck to reach a lump sticking way out of my neck. The radiology doctor also noted he was getting good enough imaging from the ultrasound machine, making the CT scan unnecessary.

At some point the doctor had numbed my neck. I don’t really remember that part, but I know it must have happened. I think my not noticing had something to do with the cool, calm, and collected demeanor of the doctor. He seemed like the type that would remain level-headed no matter what was going on around him. I really appreciated that about him.

At the start of the procedure I was told to look right and keep my head still until told otherwise. The doctor was at my left ready with the needle. On my right side, where I was looking, was the ultrasound machine. I was able to watch the doctor actually navigate the needle into my lump by watching the ultrasound screen. I found that quite interesting and helped to pass the time.

I’m not sure how long it actually took to get all the samples. If I remember correctly nine total samples were taken. Each time the doctor took a sample there was a loud click. I’m not sure if I felt the samples being cut or not. Each time I heard I click I thought I felt a small tinge of pain in my neck; but it could also have been the loud click making me think I felt something. I think there was about a minute or two between each click.

At the end of the procedure I remember the doctor holding a bandage down on the site he removed the needle from. I then laid there on the table for a long time as the medical staff went around doing whatever they were doing. I was supposed to keep my head straight for a long time, I think about an hour or so.

At the end of the hour I was back in the recovery room. I showed I could eat and go to the bathroom right away. It wasn’t very long at all after that when I was discharged. The doctor let me know it would take three to five days to get the biopsy results. Since this was a Thursday, that meant it would likely be the next week before I actually received a call with the results.

I’ll end this part of my diagnosis post here. In this post I shared my biopsy experience. Going into the next post I will share my experience getting the results of the biopsy. I just occurred to me that the biopsy procedure was the last time I had a scan or test done with some small hope that I didn’t have cancer.

CT scan results and new symptoms

CT Scan

Yesterday I had looked at whether I should have noticed any cancer specific symptoms sooner. Looking back, I came to the conclusion that it was probably unlikely I would have. At the end of that post I left off with getting the results of a CT scan. In this post I will continue my story with the CT scan and also look at some of the new symptoms I was suddenly experiencing.

Looking at my online chart, I see it was actually August 17 when I got my CT scan done. That day began with an appointment with my general physican. I began by noting my breathing had gotten really bad. I could no longer walk a normal pace without running out of a breath. I had to walk very slowly anywhere I went or risk losing breath. I also mentioned the last couple of days I had the chills in the evening and I had itching all over my body for a short period each evening. I thought this was some new symptom of  outdoor allergies. It was county fair week and I had spent a lot of time at the fair grounds. Later on I found out these are possible symptoms for the type of cancer I have. These new symptoms didn’t seem to overly concern the doctor, but the next new symptom did.

It was then I let the doctor know I found this lump on my neck. I actually mentioned it an almost matter of fact manner. It really hadn’t worried me, because I thought it was from a bug that had bitten me at a baseball game a few weeks earlier. My doctor however thought it was worth looking into immediately. He immediately inspected my neck, underarms and other parts of my chest. He was looking for other lumps; which he did find signs of at least one or two others just below the surface. After that inspection he sent me over to have a CT scan done. The doctor told me he would call me after he got the results, which would likely be early the next week (this was on a Friday).

The CT scan itself was very uneventful. The only snag was that the CT tech wanted to get a good picture of both my neck and chest. This meant holding my hands above my head at the beginning of the scan, then I would have a few seconds to move them down to my sides. As a tall guy this was somewhat difficult, but I did it.

That weekend I experienced a new symptom: fatigue. Fatigue is a word I thought I understood before. I was wrong. Luckily it only seemed to last a couple of days, basically the weekend. I don’t know if it was some sort of cancer related fatigue or if I had become depressed or what; but luckily it was only bad for a couple of days. A lesser form of fatigue seemed to stick around for another week or so, but it was much more manageable.

On Monday afternoon I received a call from doctor. He said he wanted me to come in and discuss the results of my CT scan. I knew right then there was something serious found. Doctors don’t generally call you in to discuss good news. After speaking with him I logged into my online chart and saw the notes about my CT scan. Most of what was there i couldn’t understand. But there were some items I did understand. Below I will list a few things copied out of my notes that struck me as important:

Enlarged prominent cervical lymph nodes. These are concerning for a process such as lymphoma or metastasis. Tissue biopsy is recommended of one of the enlarged nodes for further characterization.

Enlarged mediastinal nodes including cardiophrenic lymph nodes and bilateral axillary lymph nodes, which may be related to etiologies such as lymphoma or metastasis.

Partly visualized mild splenomegaly with multiple low-attenuation lesions within the spleen. This is also concerning for etiologies such as lymphoma or metastasis though other etiologies are not excluded. Consider PET/CT for better characterization.

There was a lot more, but these were the items that seemed to point towards me having cancer, specifically lymphoma. There was also mentioned in the notes about my windpipe, but it was worded in pure doctor speak, so I wasn’t sure what that meant.

I struggled that evening if I should tell my wife about what I saw. Or if I should let her hear it from the doctor the next morning (she was going to the appointment with me). I did let her know. We just kinda sat there and said we will deal with whatever comes up. The last year had already thrown a few hurdles at us. At the forefront of these hurdles was our youngest son having some sort of muscle disorder which was still being diagnosed and my wife having her heart attack this spring. I’m glad I told her right away, even though she did become annoyed with me when I admitted I almost didn’t tell her. In the end we both have to stay completely honest to get through this together.

The next day at the doctors appointment we were given the news. The doctor went through the CT notes with us. He let us know there were “several” large lymph nodes visible in my neck and chest. There were also signs of something going on in my lungs, spleen and liver. He also said it appears a lymph node was pushing against my windpipe, and likely a large reason I had been having breathing problems.  I of course was not diagnosed yet at this point. It looks like I had cancer, but he was not prepared to say that yet at this point. And even if I did have cancer it wasn’t known if it had started in my lymph nodes or in another organ. Either way though it appears it had spread.

That morning I also had some blood drawn for a variety of blood work tests. He let me know nothing appeared to be out of the normal. Of particular interest to remember for later in my journey: my white blood cell counts were normal. There was no sign of my body trying to fight anything! At the end of the meeting the doctor let me know he had already been working with a surgeon and I would get a call in the next day for a  biopsy on Thursday (which was two days away).

This post looked at just a few days time. In that time I had experienced new symptoms, notably fatigue and the chills. I also had learned at the end of that time that I likely had some sort of cancer and that it was possibly spread throughout my neck and chest. In my next post I will look at what happened during and after the biopsy.