The second PET scan looked good!

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

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

 

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

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

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

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

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

Stages and Grades of lymphoma

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Maybe not the kind of stage I’m talking about in this post.

When people ask what type of lymphoma I have the answer I usually give is grade 2 follicular lymphoma. This is what the diagnosis on my chart says. My wife will usually say I have stage 4 follicular lymphoma. Both answers are technically correct. In this post I will explain the difference between grades and stages.

 

Lymphoma Staging

Lymphoma action has a good page explaining staging and includes pictures. Here are the four stages of lymphoma.

  1. Stage 1 – In stage 1 only one group of lymph nodes has lymphoma. Stage 1 can also mean the lymphoma has started in a body organ, but hasn’t spread anywhere else; that would be known as Stage 1E, or extranodal lymphoma.
  2. Stage 2 – In stage 2 there are two or more lymph node groups with lymphoma. These groups must be all above or all below the diaphragm to be considered stage 2. Stage 2 also has a form of extranodal lymphoma. It would be called Stage 2E and the lymphoma would be in one organ and at least one group of lymph nodes on the same side of the diaphragm.
  3. Stage 3 – In stage 3 there are lymph nodes both above and below the diaphragm with lymphoma.
  4. Stage 3 – In stage 4 the lymphoma has spread to at least one organ, such as the lungs or bone marrow.

After the stage there can also be an A or B. If the person with lymphoma has certain symptoms they are considered to have “B” symptoms. These symptoms can include unexpected weight loss, night sweats, and fevers. The existence of B systems in any stage of lymphoma may impact when treatment starts.

Non-Hodgkin Lymphoma Grades

There are three grades of lymphoma. Basically the lymphoma grade shows how fast the cancer cells are growing and how likely they are to spread. Grades 1 and 2 are considered low-grade or indolent. Grade 3 is considered high-grade, or aggressive. Grade 3 can also be split into 3A and 3B. 3B is usually treated different because it is very fast growing.

My Non-Hodgkin Lymphoma Stage and Grade

My lymphoma is staged at 4B. As I saw when looking at my PET scan, I have lymph node groups from neck to groin infested with lymphoma; which means I am at least stage 3 because lymph node groups above and below my diaphragm are infected with lymphoma. My bone marrow and one of my lungs are also infected with lymphoma; which means I am stage four because of the lymphoma being spread to other organs.

I have the B on my stage because I was suffering from “B symptoms” when being diagnosed. I definitely lost more than 10% of my weight in half a year and I was experiencing night sweats. Another possible B symptom I was experiencing was itching all over my body at night for no reason.

As I noted before, my actual diagnosis is grade 2 follicular lymphoma. This was determined by my biopsy result. A  microscope was used to count the cancer cells and the lab determined I had grade 2 follicular lymphoma. The biopsy was also used to determine I have follicular lymphoma, which is a type of Non-Hodgkin Lymphoma.

The key thing to remember about staging is that it explains how far the lymphoma has spread. For grading the key thing to remember is that it explains how fast the lymphoma has spread. The fact I have low-grade lymphoma is probably the reason my stage is at 4B. I have likely had lymphoma for a very long time, but since it was slow-growing and I was not experiencing any B symptoms I had no idea there was something wrong.

Why I chose not to get a second opinion yet

22117502When talking to people I am often asked why I didn’t get a second opinion about by cancer treatment. Many cancer patients in the area go to the Mayo Clinic in Rochester and believe I should have done so as well. In this post I will explore why I chose not to get a second opinion at Mayo, at least not yet.

Time is the main reason I chose not to get a second opinion. Early on in this blog I shared some of the breathing problems I had leading up to my diagnosis. At the time it appeared I might have some sort of lung disorder. When a large lymph node appeared on my neck it allowed my diagnosis to change towards a type of cancer. When I was able to view the results of a CT scan it was quite clear that a lymph node was obstructing my windpipe. Each day my breathing got worse. By the time I had a surgery to install a chemo port I was happy to be put under just so I could get relief from my breathing problems. My oncologist believed that chemo would reduce the size of the lymph nodes and allow me to breathe once again. I am happy to say she was correct. Had I waited any longer to receive chemo treatment I am not sure I could have physically or emotionally endured those breathing problems any longer. Even delaying treatment for a few days to get a second opinion may have been too much for me to endure at that time.

Another reason I chose not to get a second opinion is that I decided I liked the local oncologist. Prior to seeing the PET scan my wife and I spent some time getting to know the oncologist. At the end of that meeting there was some trust established. The fact the oncologist was part of a larger team out of Sioux Falls also helped to enhance that trust. Each case, including mine, was reviewed by a team of oncologists. No doctor is perfect, and it is reassuring to know multiple sets of eyes would be reviewing my case as time went on. Plus there is the fact my oncologist is also a hematologist. I am diagnosed with grade 2 follicular lymphoma, which is a type of blood cancer. Everything I’ve researched on the topic said it is important for me to have an oncologists that also happens to be a hematologist. If I had a different type of cancer it is quite likely I would have gone to Mayo for a second opinion.

I would say the last major reason I haven’t chosen to get a second opinion at this time is a wish to be treated locally. It is only about a twenty-minute drive to the hospital from where I live. Chemo wears the body out and it is nice to get home where I can lay in my own bed right away after my treatments. There is a healing power of being in ones own home. It is true I could have gotten a second opinion and still be treated locally. But I really didn’t want to put the stress of additional travel on my wife. She has had her life turned upside down just as badly as me by the cancer diagnosis. Adding trips to the middle of Minnesota would have increased the stress on her.

After getting through my treatments hopefully the cancer spread throughout my body will be pushed into remission. At some point during remission it is likely the cancer will come back in full strength. I quite possibly will get a second opinion when that occurs. Hopefully time won’t be such a large factor at that time. But even if I do get a second opinion I would like to keep my local oncologist and do my treatments locally. We will see what the future holds.

Pain, the symptom I forgot to talk about

4384151Yesterday I shared the side effects from my first three-week chemo cycle. Overall I can’t complain because I feel my experience has been pretty good. One symptom I really haven’t talked much about is pain. In fact looking back at all the posts I’ve done so far it appears as though I have had no pain at all. This is far from the truth. In this post I will briefly review the pain I am experiencing.

Today I went through my second round of chemo. It went well. I slept through most of it; I think the immediate sleep I get during chemo is due to the Benadryl the nurse shoots me up with. While speaking to the nurse about any side-effects I basically just told her everything I had blogged about yesterday. Then my wife chimed in about the pain I’ve been having. My reaction was “Oh yeah”. I’ve been living with this pain for long I don’t even think about it anymore.

I’ve had various back pains for a number of years now. These aches and pains come from a mix of being overweight, out of shape, a smoker, and doing too much on my own when renovating apartments and garages. About a year ago though the pain in my shoulders and some of my ribs remained constant. I went to the chiropractor for this a couple of times. But he was only able to make them feel better for a couple of days. And even then the chiro was really only able to alleviate the pain in my lower back. I now realize it is because a lymph node was actually causing my skeletal issues in that area. It is likely that after adjusting me that the lymph node just pushed me back out of alignment. Now that the lymph nodes have been pushed back by chemo the lower back pain is mostly gone (although yes, it is still there).

Whenever possible I have tried to hide this constant pain from other people. I’m not really sure why. My wife of course has known this whole time. When sleeping I apparently swear anytime I roll over and encounter a shot of pain in my back and shoulders. Looking back I haven’t really even talked to doctors about the pain much, because I’m usually going in for something unrelated to the pain. Or at least I was assuming it was unrelated to the pain. I’ve already seen from the PET scan results that I had lymph nodes pushing into my spine and that I have cancer in my bone marrow. The current pain I feel in my shoulders and ribs is likely a direct result of the cancer in those bones.

Back to today’s appointment. When speaking to one of the nurses I said my pain was only at about a seven or eight. She thought it weird I would say only. Well, it quite often spikes to a ten if I sit or lay down wrong. Anytime I am not at a ten I consider tolerable. Sometimes I will take ibuprofen if I’m going to be sitting somewhere uncomfortable for a long time. This summer I did that a lot going to the baseball games my boys were in. That really only seems to last a few hours. If it is long day I will rotate between ibuprofen and Tylenol. Going back and forth between the two helps some. But I try not to use either pain reliever too often. Sometimes I will also take ibuprofen when going to bed; but again I try not to do so very often. It has always been my theory that I should save pain relievers for when I really need them.

The best pain reliever has been from the hot tub, which I am no longer using due to being on chemo. Sometimes a hot pack or ice pack will work a little bit. But not for very long. I’ve also tried a large variety of lotions and oils. None of them seem to quite do the trick. It actually makes sense the oils didn’t work now that I think about it. The pain is likely coming from inside my bones, lotions and rubs won’t reach there.

Now back once again to speaking with the nurse. I did let her know where my current pain is at and how strong the pain is. She let me know today would be the first shot I would get to boost my bones. I was given a shot of XGEVA. In about a month I should have another shot. Hopefully XGEVA will protect my bones enough that they can start to heal. If nothing else the XGEVA may help me from breaking any more bones (post for another day).

Going forward I am definitely going to have to let nurses and doctors know about all pains. I don’t think I was really hiding the pain from them. I just didn’t see it as relevant at the time. And when dealing with other people I think I tried to hide the pain because I don’t like to bother other people with my problems.  Hopefully in the future the pain will be gone and I won’t have to worry about it anymore.

PS. I do have some “clouding” going on as I write this. Hopefully this post made sense.

Meeting the oncologist part 2: The Fireworks!

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

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

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

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

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

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

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

Recap of the posts documenting diagnosing my cancer

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

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

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

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

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

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

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

Meeting the oncologist part 1: establishing trust

15316677Yesterday I blogged about receiving my biopsy result and getting a PET scan. Today I am going to write about meeting my oncologist. I am only going to blog about the first half of the meeting in this post. It is during the first half of the meeting I was able to meet my oncologist and decide whether I would keep her as my doctor. I will also note this is likely be a shorter post than normal, mostly because I don’t remember too much from the first half of the oncologist meeting (the reason will become clear during the part 2 post).

On Wednesday, September 5, I had my PET scan performed. In my last post I documented the PET scan experience. At the end of that post I had just completed the scan. I was taken from the imaging department up to the cancer center. This was my first visit to the cancer center. I don’t remember being nervous going up. All I really remember is hoping the meeting wouldn’t take too long since I was hungry from fasting for the PET scan.

My wife and I were brought into a room. In there a staff member came to get my vitals and some other basic information. After a while the oncologist came in. Sometimes when meeting with doctors I get the idea they are really in a hurry and want to get on with doing something else in some other place. I did not get this impression from the oncologist. In fact she seemed fully committed to meeting me. Actually, she seemed invested in getting to know both me and my wife. I really appreciated the fact she was focused purely upon the two of us.

This part of the meeting seemed to last about an hour, although looking back I think it was probably less time than that. During that time the oncologist reviewed what was known so far from prior blood draws and the CT scan. She explained the different approaches she generally takes with follicular lymphoma and what drugs would likely be used. A lot of what she would recommended was dependent upon the PET scan results, what stage of lymphoma I had, and if it had transformed into a more aggressive flavor of lymphoma elsewhere in my body. There was already suspicion of the lymphoma being spread into a more aggressive type due to possible issues seen with my lungs and liver in the CT scan. Oftentimes with follicular lymphoma a “watch and wait” approach is taken for the early stages. Since I already had what is referred to as “B symptoms” it was less likely that I would have a watch and wait approach; but she said it really depended on what the PET scan shown. She noted it is likely I would have to have a bone-marrow biopsy if the PET scan shown signs of the cancer being spread. Overall she spent a lot of time making sure we understood what might happen in the future.

During this time the oncologist answered our questions and gave us some literature to look at on our own time. The main thing I did while speaking with the oncologist was to measure her up and decide whether I trusted her to be my cancer doctor. Both my wife any myself came to the conclusion we liked the oncologist and trusted her to lead my treatment going forward. Of course we were also comforted by the fact she was part of a larger cancer team centered out of Sioux Falls. No matter how much we trust her it was good to know she had other doctors to act as extra sets of eyes.

As I said at the beginning of this post I would make this one shorter than normal. I don’t really remember much from the first half of my meeting with the oncologist. But I do remember that both my wife and I were able to determine that we trust this oncologist and believe she will work hard to fight my cancer.

This post basically is the end of my writing about the initial diagnostics phase of my cancer. Tomorrow I plan to do a recap of  the diagnostic posts I have written so far. Then on Thursday I will blog about the second half of the meeting with my oncologist. Everything changed for me at that time.

Biopsy result and the PET scan

22299417Last post I blogged about my biopsy experience. In this post I will briefly blog about getting the biopsy results and about getting a PET scan. Also I will lightly touch on some anxiety I had leading up to the PET scan.

Thursday, August 23, is when I had the biopsy done. As I noted in the last post, the radiology doctor had let me know it would be three to five days until I got the biopsy results. I really didn’t do much that weekend as I waited for the results. My breathing had gotten worse so I basically just hung out with my family. I don’t recall being nervous about the biopsy results; it didn’t seem to matter at the time.

On Monday, August 27, I received a call from the doctor. He asked if I wanted to come in to get the biopsy results. I opted to receive the news over the phone. The doctor let me know I had a type of non-Hodgkin’s lymphoma type called follicular lymphoma. He let me know the hospital would be in contact with me to set up a PET scan. My doctor asked me if I wanted to come in and talk about it. I didn’t do so. This probably should have been a big moment for me. It really wasn’t. I don’t remember feeling much of anything. At this point I had done enough research to know follicular lymphoma was not curable, but could be pushed into remission. I believe I was somewhat relieved it was a slow-growing type of cancer.

Later that day I got a call from the hospital to set up an appointment for the PET scan. The hospital I go to does not have a PET scan. Every Wednesday a truck comes from Sioux Falls to do scan. Since the PET scan was fully booked for that week, they asked if the following Wednesday would be ok. That mean waiting just over a week for a PET scan. I said that was OK and set up an appointment for the afternoon of Wednesday, September 5.

During that week many people asked me why I didn’t push to get the scan sooner. I really didn’t see a reason to. Yes, I did have options to get a PET scan sooner, but I really didn’t want to travel for a scan I could just wait a week to get locally. Also during that week my breathing continued to get worse. It was during this week that I experienced something I now know is called scanxiety. I won’t go into scanxiety at this time since I have it planned as a separate post in the future. All I will say is that as each day went on I wished I had gotten my PET scan sooner just to relieve the anxiety I was experiencing.

I did take one day “off” during my wait in order to take my little boys to the State Fair. I basically watched the free shows at the Freedom Stage while the boys played on the carnival rides. For a day I actually felt like I was able to do something for my kids and that helped to relieve my anxiety temporarily.

On the Monday before the PET scan I began the high protein diet required of me. Part of my scanxiety caused me to forget whether I was supposed to be on a high protein diet for 24 or 48 hours. That caused me to opt for doing 48 hours of high protein diet. Incidentally it was only asked to do so for 24 hours.

The other thing that caused my anxiety to raise was the fact my fall allergies decided to kick in that Monday. As part of this I was coughing even more than normal. I went on Claritin that Monday, which should mean it would be fully effective by scan time. But that didn’t stop me from worrying about coughing during the scan and possibly ruining any scan results.

Wednesday came and I was getting even more nervous about my scan. When I got a call from the PET scan technician asking if I wanted to come in an hour early I practically jumped for joy. Going early meant I could just get the damn scan over with.

Despite all the anxiety I had, the scan itself was very uneventful. The tech took my blood to ensure my glucose levels were low. I have a post coming up to explain why glucose levels are important for a PET scan. After the tech injected me with the tracer drug I just sat around visiting with the wife and with the tech for a while. He was a very interesting person (in a good way) and will also likely be the topic of a future post.

The PET scan itself went quicker than I thought it would. I laid down on a table similar to the one used for a CT scan. As time went on the table slowly moved me through a tube. Despite my anxiety leading up to the scan, I went the whole time without one cough. The scan tech had some good music on in the background and I focused on that music to get me through it. All-in-all I found the PET scan to be a non-event.

When the scan completed the tech let me know he would have the images prioritized by the staff in Sioux Falls. This was due to the fact I had an appointment with my oncologist later in the afternoon. Looking back I still think I let my “scanxiety” get way too bad for something that ended up being no big deal.

I’ll end this post here. In this post I mentioned getting my biopsy results, waiting for the PET Scan, and actually going through with the PET scan. One common theme in this post was me going back and forth between seeing things as non-events and suffering anxiety. There really didn’t seem to be any middle ground. Next up in this series of blogs will be two posts about my visit with the oncologist.

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

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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.