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.

Should I have discovered my cancer sooner?

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How I spent my summer

 

Today I thought I would do a post about the symptoms of cancer I did or didn’t have before getting my diagnosis. My particular flavor of cancer is a form of low-grade lymphoma; which by its very nature is rarely caught early. Since I have found myself and other cancer patients ask this I thought I would share my pre-diagnosis symptoms (or lack thereof). Maybe this will help other newly diagnosed cancer patients with this hard question.

First and foremost I have to say that I am a middle-aged overweight smoker. These three factors have always been brought up by doctors; as you will see throughout this post. For about the last five years I have been diagnosed with bronchitis about twice a year. Without fail I would get bronchitis every winter and every spring. I went to a variety of doctors for this. Each time I would get a prescription for albuterol and some antibiotics. Then I would be told to lose weight and quit smoking. Within a couple of weeks my cough would be gone and I would move on with life. Some of the doctors did say I would eventually get COPD if this continued; some doctors didn’t.

In late November of 2017 I decided to give a new doctor a try. I was once again having some breathing problems and a “smokers cough” that wouldn’t go away. I was kind of apprehensive because he is not a MD, but a DO. I had never heard of a DO before, but apparently a doctor of osteopathic (DO) medicine considers the whole body when treating symptoms instead of just treating symptoms. I immediately liked this doctor, and he is still my general physician. He was the first doctor I felt actually listened to me and asked questions about my cough. At this time I was starting to get winded very easily when going up stairs. An X-Ray was done and he could see fluid in my lungs. He put me on an Advair inhaler twice a day and an albuterol inhaler as needed. Finally he wanted me back after the new years for a physical so we could see how well the inhalers were working.

The inhalers worked great. My breathing problems improved dramatically. Due to that I decided to live healthier. I put treadmill and weight machine in my basement. Five days a week I would do a job on treadmill and three times a week I would do a light weight workout. I was feeling better than I had in years.

I should probably mention now that my youngest son has a debilitating muscle disorder which was being diagnosed at the time (and still is). Due to this I was making constant trips to specialists in St Paul, MN, and had to work from home for the days he was unable to attend school. Also my wife and I own a tax office. Even working from home this meant very long hour for me from January through April. Between caring for my youngest son and work I never did go back to the Dr in January like I was asked to. As February came about I had stopped working out as well, there simply wasn’t any time for that. Most of the weight I had lost up to that point was gained back during tax season. I was also starting to get winded on stairs again.

It wasn’t until late May that I went to my doctor again. He did the standard physical for me. All of my blood tests and other tests he ran showed I was fine (especially for anything that would point towards cancer). He once again noticed I had fluid in my lungs and scheduled me to have a pulmonary function test (PFT) and a stress test. He was looking towards some type of lung disorder.

The stress test was in late-June. For that stress test I had the injection and scan done. The results from that didn’t come back until well to the end of July. I was not happy with the results, they were “unreadable”. So after visiting with the cardiologist about the results I was scheduled for another stress test of a different type. At that appointment it had been noted I still had not had my PFT; that had been rescheduled due to the liquid in my lung. I was supposed to reschedule that after my antibiotics were done. Due to a misunderstanding on my part that was never rescheduled. The cardiologists then rescheduled me for the PFT.

Once again though I let other parts of my life interfere with continuing my diagnosis. During the summer I had been traveling the state for baseball; both to watch my kids play in Midgets and Teeners, and also to watch American Legion games. It was in late July at a baseball game that I noticed a large swollen lump on my neck while swatting a bug. I thought it was weird for me to have a reaction like that, but I didn’t put much more thought into it since it didn’t hurt.

In mid-August I then did my second stress test; this time an echo cardio stress test. I HATED this test! My breathing was getting very bad by this time, and running on a treadmill felt almost impossible. I almost felt like I was having a panic attack. Despite how I felt, the cardiologists informed me in a few days that I had passed the stress test and my heart was healthy.

Around the same time I had my PFT. That was another test I absolutely hated! Trying to breath in and hold my breath was very taxing. When the results of this test showed up on my Sanford MyChart app I could tell I failed it. It seemed like progress was being made, we are narrowing where my breathing problems are.

In late-august I finally met with my doctor again. He did let me know I should have come back sooner. I let him know my breathing had gotten so bad that I had to rest anytime I walked at all. I then mentioned the lump almost matter-of-factly and he immediately scheduled a CT scan. The results of that scan showed I in fact had a lot of swollen lymph nodes and possible problems in my lungs and liver. This was the first time I was faced with the possibility of cancer, instead of just a lung disorder (although some of the lung disorders can be just as bad as cancer). This was also when I found out a swollen lymph node was pushing on my windpipe, and thus likely the cause of my breathing problems.

I will handle the further diagnosis of cancer in a future post. For the purpose of this post I believe I have shared enough pre-diagnosis information to show I really didn’t have any cancer-specific symptoms. Most of my symptoms were leading towards some type of lung disorder. The doctor did have blood works done on me, especially CBCs. None of the tests raised any red flags for cancer. It wasn’t until the lump showed up that a possibility of cancer entered the equation. Even then cancer was not a sure thing, since lymph nodes can swell for other reasons. It is possible that if I had followed up on my appointments sooner (when I was supposed to) that a CT scan had been done sooner and the swollen lymph nodes would be discovered. Perhaps that wouldn’t have happened either. It is hard to know what would have happened.

As I noted at the beginning of this post I have spoken with other cancer patients about whether we should have been diagnosed sooner. My conclusion is that I don’t think I would have been diagnosed sooner. Until the lymph node came out of my neck there was no reason to believe I had cancer. Even with that lump it took a few weeks for me to go in, since I wasn’t feeling pain in the lymph node I figured it was benign.

Welcome to my new blog as I learn to fight against cancer

22092894Hello everyone, and welcome to my new blog. My name is Ken Santema and I have recently been diagnosed with lymphoma (wow, it sounds like an opening line in a support group, which this blog kind of is perhaps). I have been blogging for many years about technology, project management, and South Dakota politics. Now that my life has been turned upside down by a cancer diagnosis I am placing almost all of my writing energy into blogging about dealing with cancer.

On this site I will blog about a variety of topics. First I will be doing posts giving status updates so family, friends, and any other interested parties can keep up to date on my current health. Additionally I will be doing posts about how I am dealing with cancer emotionally. There will also be posts about how my family is coping and what we are doing to get through this as a strong unit.

Finally I will be sharing insight I have found on other blogs of this type. Reading blogs from other people fighting cancer has really helped me get through each day. I have hope that this blog may help others fighting cancer as well.

This welcome post is the only one I plan to do today, as I am getting quite tired. My first round of chemo started yesterday and even though I felt really good this morning I definitely am not feeling like writing anymore today.