The bone marrow biopsy experience

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

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

The plan

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

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

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

The backup plan

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

My port worked!

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

The first attempt at a bone marrow biopsy

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

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

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

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

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

Time to implement Plan B

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

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

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

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

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

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

Recovery

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

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

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

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

Now it is time to wait again

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

No all clear after chemo, bone marrow biopsy tomorrow

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

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

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

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

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

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

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

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

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

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

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

PET Scan and Sleep Study today

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

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

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

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

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

Multimedia Friday: the PET scan

Earlier this week I mentioned being able to see my second PET scan result. This is a scan that not many people know a lot about, including myself before I first had to get a PET scan. So for this weeks multimedia Friday post I thought it would be worthwhile to share a couple of videos about the PET scan.

Up first is a video explaining the basics of how a PET scan works. This video is just over five minutes long.

Up next is a video of someone showing their PET scan results. I like this video because it shows the “slices” of the body in the same way my oncologist shows me the scan results.  The video also includes white spots similar to the cancer in my scans taken. This video is just under 8 minutes long, but only about the first four minutes are looking at the PET images. The author of this video does not allow it to be streamed from other websites. But if you hit play on the video you can simply click on “watch this video on YouTube”.

Finally I want to share this video explaining the difference between MRI scans, PET scans, and CAT scans. I found it to be interesting. The video is five minutes long.

Bonus Music Video

Up first is kind of a silly song from comedian Dana Carvey. But I couldn’t get this song out of my head earlier this week when writing about R-CHOP, the chemo regiment I am on. Even now in the back of my head I’m singing the lyrics “Ima chopping broccoli!”

For the metal fans we have System of A Down with their song Chop Suey. Not only does this song include the word chop, but in many ways it probably is relevant for too many cancer patients.

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!

PET Scan results posted and they look good

Doctor thinks the computerLast Friday I posted about my scanxiety related to waiting for my PET scan results. Originally I thought the wait to see the results would last until Tuesday (tomorrow) when I see my oncologist prior to chemotherapy. Luckily though I was able to see the results of my scan this weekend as they were released to my chart. After reading the results I can say that I am very happy with my response to chemo.

Here is part of what was posted in the lab results part of my online chart:

IMPRESSION:
1. Compared to prior PET/CT 9/5/2018 widespread nodal involvement above and below the diaphragm, splenic and widespread skeletal involvement in the axial and proximal appendicular skeleton have regressed in size and metabolic activity is now normal. This is consistent with a complete metabolic response to therapy. Previously the patient had level 5 disease on the 5 point system and this is returned to level 2 disease of the 5 point system

I put a few sections above in bold lettering. If I am reading this correctly it means I have been responding very well to chemo. It was such a relief to read this. The thought of not responding to chemo and having to start over with a new chemotherapy regiment with a whole different possible set of side-effects was stressing me out. Actually part of me hopes this means I won’t have to do all eight rounds of chemo. Currently I am scheduled to have six to eight rounds of chemo. I’m hoping my response to chemo means I will be able to stop at six rounds. But that will be up to the doctor to determine. Either way I’m happy with what I read.

There are still some trouble areas in my report. But the main area of concern was noted by the imaging doctor as “likely benign”. Also I seem to have developed sinusitis since my last PET scan. I’ll talk to my oncologist about these results tomorrow and see if there is anything that has to be done. Right now I really can’t say I’m worried about them at all.

I am also looking forward to actually seeing my whole scan tomorrow. The online chart does not give me access to see the scan, only the results of the doctor that reviewed the scan. The first scan reminded me of a large fireworks display, hopefully this time it looks more like kiddie fireworks. Plus I know it will relieve a lot of stress from my wife if she is able to see the cancer receding.

Tomorrow I have round four of chemo. I’ll probably do a post prior to my doctor appointment and receiving chemo because I am usually to tired to do any post afterwards (that shot of Benadryl really puts you under). That means it will likely be Wednesday or Thursday before I post about seeing my actual PET scan. Hopefully it looks as good as I think it will!

Waiting for the results of the second PET scan

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The PET scan machine I was in looks similar to this, but has a much longer tube the body goes into.

On Wednesday of this week I had my second PET scan done. I didn’t blog about it at the time because I was feeling somewhat under the weather due to fall allergies. In this post I will share how this experience went and some of the scanxiety this has caused me.

My first PET scan was done about two months ago. At the time I just got my biopsy result and found out for sure I had cancer. Leading up to that first PET scan I had a lot of anxiety, also known as scanxiety. This time I don’t recall having any scanxiety prior to the PET scan, but now that I have to wait for the results I definitely am being impacted by scanxiety.

Before going into the scanxiety let me back up and share my PET scan experience this time. Two days leading up to the PET scan I was on a high protein diet. About 45 minutes prior to the scan I was injected with a glucose solution that contains radioactive material. It is because of this radioactive material that most people will not want to have a PET scan done unless absolutely necessary. Interesting side-note. The tech said the actual injection solution was made down south (I believe in Omaha) and is shipped to Sioux Falls. In Sioux Falls the solution is put into the doses needed for that day and couriered to where it is needed, in this case three hours away in Aberdeen. I believe he said the half-life of the radiation in the solution is 110 minutes. This solution travels quite a bit just to be used in these PET scans. Oops, time to get back on track and focus on the PET scan.

I was on the PET scan bed for just over a half-hour, but the scan itself only lasted for about 25 minutes. My scan went from about half-way down the head to my thighs. Since I am so tall (6’3″) my scan takes longer than people of a normal height. I actually kind of enjoyed the scan for the first half. The bed/table shape feels good on the back and a wedge is used to allow the knees to be bent. About halfway through the scan though my left knee locked up and was in pain for the rest of the day. This might be due to an old injury, or maybe due other factors. It is hard to say.

After the scan my wife and I went out to eat. My scan was in the afternoon and I had been fasting all day for the scan and I was hungry as heck. By the way, mid-afternoon is a great time to go out to eat if you are a chemo patient. We basically had the restaurant (Ruby Tuesdays) to ourselves. I didn’t wear a mask and it felt good to be going out.

The last time I had a scan we saw the results shortly afterwards during an appointment with the oncologist. That was when I first saw the fireworks. Now this time I have to wait almost a week for the results. My next scheduled appointment with the oncologist is next Tuesday during my fourth round of chemo. I didn’t think waiting for the results would impact me, but the waiting is definitely causing me some anxiety. This PET scan will show if the first three rounds of chemo are actually working. If the chemo isn’t working I’ll likely have to switch to another blend of chemo drugs. Chemo drugs are nasty and can have some horrendous side-effects. I know and can deal with the side-effects of my current chemo regiment, known as R-CHOP. The thought of chancing worse side-effects is actually causing me quite a bit of anxiety.

It of course didn’t help that both my wife and I saw a preview of the scan. From our untrained eyes the scan does not look any better than it did two months ago. Actually it appears there may be a new bright spot. Wondering if my cancer has spread or has changed from a grade 2 lymphoma into a grade 3 lymphoma is definitely causing me some stress.

Between now and Tuesday I am trying to keep my mind occupied in the hopes to keep my scanxiety down. So far it isn’t working very well and my anxiety seems to increase each day. Hopefully on Tuesday the Oncologist will let us know the chemo is working as planned and I can continue my R-CHOP regiment to push this lymphoma cancer into remission.

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.