Two years of my cancer experience – thanks for the past and future support

I still remember receiving that phone call from my doctor two years ago. He had called to let me know I had cancer. During that time, I have had many ups and downs, most of which became documented on this blog. And I will continue to document my journey in the future. Even though I am in remission, it does not mean my cancer experience has reached completion. Actually, until they come up with a real cure for non-Hodgkin’s lymphoma, my cancer story will never end. 

I planned on doing a long post summarizing the last two years. But then I realized that it would be so long that nobody would read it. Instead, I wanted to write a brief post to thank everyone who has been reading my blog and sharing my experience. The emails I get from cancer survivors and family members of a cancer patient have been truly heartwarming. It makes me feel good to know that reading my story has helped others out, even if it is only small ways.

In the future, I plan to continue blogging about my cancer experience. Unfortunately, I have been unable to post any blogs over the past few months (a long story having to do with Facebook and the wrongful accusation of me being a spammer). Over the next few weeks, I will do posts updating everyone about what has happened to me this summer. There have been ups and downs, but I am pleased to say there have been more ups than downs.

PS. I should also mention that I am currently compiling a book of my first two years dealing with cancer. Plus, after I get my teeth fixed (a subject of an upcoming blog), the new cancer podcast will begin. I have found a good cohost and hope to have my teeth fixed in the coming weeks.

Song of the day: Back In The Saddle Again

While I love Aerosmith, this isn’t that song. Instead, I’m going to play Back In the Saddle Again, by Gean Autry. I’ve just always thought this was such a cool song. Plus, it’s an excellent way to welcome myself back to blogging.

Bonus Song: The Last Cowboy Song

Since I’m in a country mood, I thought this classic Ed Bruce song performed by the Highwaymen was in order. This is just a great song. (The fact I finished watching Yellowstone this weekend maybe explains the country music.)

Stages and Grades of lymphoma

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.