Lymph nodes

109694570For today’s post I will tackle a reader question. This question comes from Angela:

Ken. What does lymphoma mean? Someone I work with has lymphoma cancer like you.

That is a great question. Lymphoma is cancer of the lymphatic system. A nice easy answer. But I think I’ll go a little bit more into it and explain what the lymphatic system is.

The lymphatic system is part of the body’s immune system. On the University of Rochester Medical Center website I found a really good definition of the lymphatic system:

It helps the body fight disease and sickness. The lymphatic system consists of a series of thin tubes and clusters of lymph nodes throughout the body. These tubes carry fluid, called lymph, through the lymph nodes and back into the bloodstream. This colorless, watery fluid is rich in white blood cells. Lymphocytes are the main type of cells. They help the body fight off infection. A lymph node is about the size of a pea and has large numbers of lymphocytes. Groups of lymph nodes are found in the stomach, chest, groin, and neck. Some of the body’s internal organs are also part of the lymphatic system. These organs include the bone marrow, spleen, thymus, and tonsils. Other organs, such as parts of the digestive tract, also contain lymph tissue. Lymphoma can start in any part of the body where there is lymphatic tissue.

The picture I have attached to this post is an old artists rendering of the lymphatic system. As part of their normal operation lymph nodes will swell as needed. For instance if the body determines more lymph cells are needed to fight a throat infection, the lymph nodes in the neck may swell so they can create more lymph cells for the body to use fighting that infection. In the case of lymphoma there is also likely to be swelling of lymph nodes. In my case I had many (probably dozens) lymph nodes which were swollen. One difference between normal swelling of the lymph nodes and my cancerous swollen lymph nodes is their hardness. Normally even swollen lymph nodes are squishy. My cancerous lymph nodes felt like a hard rubber.

From my PET scan I was able to see that my lymphatic system is well infected with lymphoma. My spleen and bone marrow are also infected, both of which are part of the lymphatic system. Actually I have had major digestive issues over the last couple of years. I now wonder if this isn’t somehow due to the lymphoma.

The most common lymph nodes people probably hear about are probably the tonsils. Many people, including one of my sons, have their tonsils removed due to childhood illnesses. Also you have likely had doctors check your lymph nodes or the lymph nodes of you children. I know recently I had to bring my children in because of a virus. One of the first things the doctor did was feel their necks, just under the back jaws. This is one of the places where lymph nodes are accessible from the outside. A swollen lymph node could give the doctor an indication the body’s lymphatic system has become active to fight infection.

In a future post I will talk more about lymphoma and the different types of lymphomas. For now though this is a good primer about lymph nodes to help people understand them. I’ve also included some of my personal examples dealing with the lymphatic system.

The blue mask

SONY DSCIt is Halloween today! This is a day where a lot of kids and adults wear masks to pretend they are someone or something else. In the past my wife and I have held Halloween parties and dressed up in couples costumes (my favorite was me as a gunslinger and her as a barmaid). Between my being on chemo and us traveling to get our youngest son seen by a specialist, no costumes or parties are happening this year. Even so I will be wearing a mask this year, it just happens to be the mask I wear every time I go out now that I am on chemo. In this post I will blog briefly about the blue mask.

Since I’ve started chemo I tend to stay out of public as much as possible. My immune system gets trashed by the drugs I’m taking and I have to do everything I can to reduce the risk of catching any viruses or diseases. Of course that doesn’t stop me from going to events my kids are participating in. When I do go out I wear the blue mask.

Wearing the blue mask and being bald definitely makes me stand out. I’ve noticed everyone looking at me while trying to make it seem as if they aren’t looking at me. That really doesn’t bother me. The best is the times I have to go into the school for my youngest sons. When going through the elementary there are some younger children who say hi to me and ask if I am a doctor. That always gives me a smile.

I’ve been in contact with other chemo patients that don’t wear the blue mask. Some of them believe the blue mask does very little or they don’t want attention drawn to them. Personally I think the extra precaution is warranted, especially since it is such an easy step to take in order to protect myself. Actually there has been a lot of cases of pertussis (whooping cough) going around at the schools. I really don’t want whooping cough while my immune system is compromised. So I will continue to wear my blue mask when out in public.

Tonight I will be around my little nieces. While they are dressed in their costumes I will be dressed in mine: a surgeon! I guess I am dressing up for Halloween after all.

Got my bone shot today

20815350Every four weeks I have to get a shot to rebuild my bones. This is due to the fact my cancer has spread from my lymphatic system and into my bones, known as bone metastasis. The drug I take is called xgeva, also known as denosumab. In this post I will briefly blog about what xgeva does.

Xgeva (denosumab) is a drug often used to treat osteoporosis and hypercalcemia. Recently it has also been used to treat bones which have been weakened by cancer. Since my cancer has spread heavily to my bones I am at risk for bone-related injuries. Actually I probably already broke or fractured a pinky finger last month. My pinky is mostly healed now, although I am still waiting to lose the nail. Hopefully this xgeva shot will help prevent any further bone injuries and reduce the bone pain I am experiencing.

How Xgeva works is pretty cool. There are cells in our body that continuously break down our bones and other cells that continuously rebuild those same bones. The balance between these cells doing their work allows bones to be healthy. Certain conditions such as cancer in the bone marrow throws this whole system out of balance and bones can become too broken down. Xgeva is basically an antibody which interrupts the proteins that break down the bones. The benefit of this is the bones are allowed to be rebuilt and be strengthened.

I had my first xgeva shot on my second round of chemo, which was exactly four weeks ago. Every four weeks I will continue to have xgeva shots. So far I haven’t had any noticeable side-effects from xgena. I believe the pain I feel in my back has been going down, possibly due to my xgena injections. Hopefully this round of xgeva will bring my bone pain down even further.

Adults have parents too

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My parents and my boys.

Parents want their children to be healthy and live longer than them. As a parent I worry about the health of my youngest child. After visiting with my parents this weekend, especially with my mom, it occurs to me this extends to children who are adults as well. In this post I will briefly blog about some ways my mom is impacted by my cancer diagnosis.

Before going on I will say I think I have the best parents. I think my mom and dad did the best to raise me and my brothers with what they had available. As my wife and I raise our children I tend to look back to what they did as guidance.

During each step of my cancer diagnosis my wife and I have made sure to keep my mom in the loop. She got calls when I went in for a biopsy, got the biopsy results, saw my PET scan results, had my port installed, went in for my first chemo treatment, and so much more. Each step of the way she had to wait on the phone and hope for the best. Being two hours away she simply can’t just drop by. The emotional stress of waiting each time must be almost unbearable at times.

Actually it really doesn’t even matter how far away my mom is. Since I’ve started chemo both my mom and dad have been battling their own health issues. Because of my immune system being so low they have not dared come visit me until this previous weekend. I can’t imagine the tremendous emotional strain this has been for my my mom. I’m sure many people are asking her how I have been responding to treatment, and she has been unable to say something like “yeah, I saw Ken the other day and he is looking good”. Hopefully we can all stay healthy enough that we are able to keep seeing each other more often.

But it is not just me that my mom is being kept away from. My youngest son Ashton has health issues, which appear to be getting worse. The middle son Lawson is definitely a grandma’s boy, and she has been unable to see him. And of course my mom sees my wife Mindy as one of her own children. My mom has been staying away to ensure I don’t get sick, but in doing so she has been unable to enjoy her grandchildren and comfort her daughter-in-law. This further adds to the emotional stress she is enduring.

I do believe this blog has been helping her cope, and she has said as much. In this blog my mom is able to better understand what I am going through. When friends and family ask about me, she is able to refer to my latest blog post. In some way this blog can help her to share my cancer experience, something I think as a parent would be invaluable.

I’m actually going to keep my word and make this a short post today. All I really wanted to do in this post is to briefly highlight that the parents of cancer patients are greatly impacted; especially if their children are adults and no longer living at home. Even adults have parents…

Multimedia Friday – Videos to explain cancer to kids

Its multimedia Friday again. Today I thought I would post a couple of videos to help people explain cancer to kids. I know my kids have had questions about cancer and I think my wife and I have done a fair job of explaining things to them. But I also think using videos such as the ones below can be helpful to supplement talks with kids.

I think this first video is great to explain to kids how some things might change when a family member has cancer.

This next video has some tips for parents about how to talk about cancer with children. The narrator of the video focuses on a couple of different age ranges.

Finally this last video is an animated video to possibly help younger children understand cancer in a visual way.

Bonus Video

This weeks music video is from the Danish Band D-A-D. The lyrics from this song hit home for my cancer diagnosis. Especially the line “I got run over by truth one day”.

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.

My wife thought chemo went differently yesterday

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The wife fretting over me.

Yesterday I blogged about my third round of chemo. Overall I felt it went well, even with my blood pressure dropping quite a bit. My wife Mind however remembers yesterday differently. In this post I will briefly blog about how she though this round of chemo went.

 

First off Mindy agrees that my blood pressure was dropping. But she doesn’t see it as being no big deal. In fact her and one of the nurses were worried a bit because my blood pressure was dropping much quicker than it had the previous two rounds of chemo. My initial blood pressure was 130/68. It was 99/52 the last time it was checked. Telling her this is a known possible side-effect doesn’t make Mindy feel any better. It is just one of the things my poor wife has to worry about while I am on chemo.

Another thing other thing Mindy worried about yesterday was my dizziness. During this round dizziness seemed to be a larger side effect that it had been in the past. Even if I got up slowly to go the bathroom I would experience some dizziness. Mindy said it looked like I was about to fall over and I was very unsteady walking to and from the bathroom. I really think she wishes I would have called the nurse. But I couldn’t see calling a nurse for doing something so simple as walking to the bathroom. Mindy might have been right though…

Finally Mindy mentioned I was not sleeping as hard as I had during the previous two rounds of chemo. The Benadryl definitely knocked me out. But this time she said I would keep sitting forward in my chair and it would look like I was about to tip forward out of said chair. I don’t recall doing this. But I expect I was doing so because my back pain has been getting worse over the last few weeks. The shot I take to rebuild my bone marrow probably has something to do with my back pain getting worse. Sometimes the shots of pain I get are debilitating. But it doesn’t last long at high levels of pain and usually settles down to about a six on my pain scale. Mindy was definitely worried about this happening during chemo and me possibly falling forward onto my face.

I’ve said it before that chemo is hard on my body. It is also hard on my psyche at times. But I think in some ways Mindy is under much more mental stress due to my cancer than I am. It doesn’t help matters that we have a son with medical problem just as bad if not worse than my own. Hopefully I can find a way to reduce some of the stress on Mindy. She really has been a large reason I have coped so well with cancer so well.

Low blood pressure during chemo

22376520Today I had my third round of chemo. By this point I don’t even fret about chemo days anymore. One of the first drugs they shoot me up with is Benadryl, which knocks me out for the next few hours. The only chemo day side-effect which is somewhat troubling is my blood pressure getting low.

My blood pressure was 130/68 at the begging of this mornings appointment. As each IV bag was given to me the blood pressure would be checked. After taking the first IV R CHOP drug (I believe it was the rituximab) my blood pressure dropped. It dropped even further after the other three chemo drugs. At the end  of chemo my blood pressure was 99/52. My bottom number technically fell into low blood range since it is under 60. The nurse was concerned about this. But my blood pressure did this the last two rounds of chemo as well. I’ll just take it easy for the next couple of days for my body to recover from the chemo drugs.

In researching R CHOP blood pressure problems I’ve noticed this is a somewhat common side-effect. My advice to others on chemo is to not be overly worried about blood pressure drops as long as the nurse is continuing to monitor the decline. But just like anything if the low blood pressure continues after going home I would definitely call the doctor! The low blood pressure may not be an immediate concern, but it could turn into a very bad situation if allowed to get out of control.

Working while on chemo

Desktop of the businessman.One of the most common questions I get from people is whether I am able to work while going through chemo. I do work, but it is greatly diminished from what I was once capable of. In this post I will briefly blog about my current work experience while going through chemo.

The type of chemo I am going through is called R CHOP. It is a very aggressive type of chemo and is very hard on the body (but then I have yet to hear of a non-aggressive type of chemo). I have chemo once every three weeks. On the day of chemo and the two days following I am basically unable to work at all. Fatigue hits heavy on these days and I sleep most of my day away. Actually I look forward to these days now, because I know for at least a few days I won’t suffer from insomnia. At the same time though it means on these days I cannot work.

Earlier this year I had already started to work from home most days. This was not done because of my cancer. Instead I started to work from home three to four days a week in order to take care of my youngest son. By summer I was rarely able to make it to the office even once a week due to breathing problems. When I started chemo it was time to face the fact I should not be in the office at all. There are too many customers who come into the office sick. With my weakened immune system it just doesn’t seem worth the risk to come into the office when I have the option to work from home. The biggest downside to working completely from home is that it feels like I’ve abandoned my wife to run the office by herself. Actually, cleaning out my office was one of the hardest things I’ve done since being diagnosed with cancer.

Working from home may allow me to keep away from germs. But it doesn’t mean I get a lot done on the typical day. The brain fog I suffer from seems to get worse every day. On some days I can only work a few hours before the brain fog gets so bad that I can’t even put two thoughts together, much less work. On other days I can put in a good six or even eight hours of work. There is no consistency about how much time I am able to work. I have found that if I spend an hour playing word or logic games before I work, that I am able to use my mind for work longer. Also the days I am able to work longer I am doing tasks such as archiving old files in our database. This is a long monotonous process which requires very little brain power. Even if it is monotonous it does at least give me something I can do when the brain fog sets in.

I am somewhat lucky that I am able to work from home. Many cancer patients don’t have this option. Hopefully by the time busy season begins for the office I will be done with chemo and my brain fog will lift a bit. No matter what though I am more than happy to do whatever work I can from home. It is much better than just sitting around thinking about cancer.

Multimedia Friday – Video explaining follicular lymphoma

Cd player

Last Friday I posted a playlist of five songs I found on YouTube to help explain the cancer experience through music. I also had a proud dad moment and posted the video of my middle son marching in his High School band. Going forward I think I will continue to post videos and songs on Fridays.

This week I will post an informational video I found earlier this week. I sent a link of this video to a good friend to help him understand the type of cancer I suffer from. Since he thought it helped him to understand my diagnosis, I hope this video will help others understand follicular lymphoma.

Bonus Video!

I can’t go without posting a song as well. This weeks song reminds me of the brain fog I suffer from. I know Jimmy Hendrix did write this song about cancer. But the opening verse to Purple Haze sure feels like cancer induced brain fog:

Purple haze all in my brain
Lately things don’t seem the same
Actin’ funny, but I don’t know why
‘Scuse me while I kiss the sky