I’m in remission… most likely

Yesterday I had an appointment with my oncologist. Going into this appointment my wife and I were hoping to hear that I am in remission. We kinda heard that. So I am very happy to say that I in remission. In this post I’ll go further into why I say I kinda heard I am in remission.

Two weeks ago I posted about going in for a bone marrow biopsy. This was done because my PET scan showed possible cancerous activity in my pelvis. The rest of my PET scan looked good and it would have appeared chemo worked 100% if it had not been for that spot on my pelvis. To ensure I am in remission my oncologist ordered a bone marrow biopsy for me. My experience of going through the bone marrow biopsy can be read here. Truth be told I hope to never go through another bone marrow biopsy.

During yesterday’s appointment the oncologist let my wife and I know the results of the biopsy tests. All but one of the tests had been completed. They all came back negative for active cancer. That is great news and theoretically I am now in remission. There is still one test she was waiting for from Mayo. Even though she didn’t think that test would change anything, she was reluctant to actually say I am in remission. I guess I can understand she is just trying to be conservative. Yet at the same time the main biopsy test that most likely would have shown any active cancer showed negative. I’m sticking with that test and calling myself in remission until told otherwise!

Also during yesterdays appointment we discussed maintenance infusions of Rituximab. Starting February 20th I will start my maintenance infusions. This was a tough decision for me and I will cover in a different post why I decided to go ahead with maintenance infusions over the next two years.

I also found out during yesterdays appointment that the results of my sleep study were ready. It was two weeks ago that I had the sleep study done and I must admit I hadn’t thought a lot about it since then. The oncologist told me the sleep study showed I do have sleep apnea and that a second sleep study will need to be setup to get me properly set up with a CPAP machine. Oh goody… Oh well, maybe that will help me sleep better at night.

I want to end this post on a good note. As far as I know I am now in remission! This is a great way to start 2019 and I look forward to spending a lot of time with my wife and kids this year and for many years to come!

Bonus Song – Feeling good again

I’ve posted versions of this song a couple of times on this blog. Now I will do so again. I can’t help but feel good about being in remission! This is a very good unplugged version of the song; even if the lack of a steel guitar is noticeable.

The day after the bone marrow biopsy

Yesterday I posted about my bone marrow biopsy experience. It was a long day and I was happy to be done with the whole thing. Since then I have had many blog readers inquire about how I felt the day after the biopsy. I can happily say the day after went really well and I had no apparent bone pain.

I had feared the bone marrow biopsy would leave me feeling hurt for a long time as the bone heals from being pounded into. In the past I’ve had broken bones that hurt for quite a while as they healed. That fear was unfounded in my case. The area where the needles were injected into me are tender. But I did not feel any actual pain in that area. Really the only pain I felt the day after the procedure was in my lower back; and I think that had more to do with laying in uncomfortable positions during the biopsy procedures.

Removing the bandage was also a non-event. My wife and a nurse had noted a blister under the bandage which could have come open while removing the bandage. This didn’t happen. Actually the blister had gotten much small over course of the night.

The wound site itself looked good as well. With the bandage removed there were two distinct holes. Likely each of the two biopsy procedures had used a different hole. There was a little bit of bruising and swelling around the wound sites, but no pain or signs of infection.

Really the only problem I had the day after biopsy surgery was trying to get all the sticky glue stuff off from the heart monitors. I swear that stuff does not come off for anything. Gorilla glue has nothing on the heart monitor goop!

Since the day after the bone marrow biopsy was such a non-event I’ll end this post here. Actually as I write this post, two days after the biopsy, I’m feeling pretty good. Perhaps I’m ready to possibly get some work done on another chapter of a book that I keep procrastinating on.

Mulimedia Friday

Or maybe instead of getting another chapter done in the book I’ll once again get sidetracked by YouTube. Here is a classic Frampton song to explain how I feel today:

And with everything I’ve been through I can’t help but think I’m very lucky and am very grateful for what I have. Queue Joe Walsh:

And finally I don’t really think I would have gotten through all this without my friends and family.

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).

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.