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.)
You can’t go anywhere without reading or hearing about the coronavirus. While the coronavirus is something to be wary of, I have decided not to live in fear of the virus. That being said, I have been taking a few extra precautions, just in case. In this post, I will briefly discuss why I don’t fear the coronavirus and what changes I have made.
Before going on, I will say this is just my perspective and what I am doing. I am not judging anyone who acts differently or saying anyone else should feel and act as I am. Each person has their own circumstances and experiences.
I live in a rural portion of a rural state. There isn’t a lot of people that live in Mina, SD. Yes, I work in Aberdeen, which is a much bigger city. But Aberdeen itself is pretty much in the middle of nowhere. Is it possible for something like the Coronavirus to make its way here? Yes, it is possible. But right now, I would instead prefer to focus on living life. I will deal with anything like the Coronavirus when and if it makes its way here.
Yes, my immune system does dive every eight weeks after getting my Rituximab infusion. But it doesn’t go down near as much as when I was getting full-blown chemotherapy infusions. Actually, I’m more nervous about my memory issues than I am about a compromised immune system.
I think the above paragraphs include why I’m not living in fear pretty well. The idea of living in fear doesn’t seem like living to me.
Another reason I’m possibly not living in fear was brought up by a friend after I wrote the post referenced above. I’m an Army veteran. At age 18, I had to prepare a will get into the mind-frame that I would die. That mind frame was reenforced through a deployment to Bosnia and missions to other countries. Actually, I’m more worried about PTSD eventually impacting me than I am about a virus.
People who have serious chronic medical conditions like:
Well, I have follicular lymphoma, so I have a severe chronic medical condition. The site does have recommended actions for people who are at high risk. While I’m not going to barricade myself in my house, there are some precautions I am taking.
The precautions I am taking
Even though I’m not living in fear, I am still taking a few precautions. Mostly I am avoiding crowds of people. There are a concert and a movie I wanted to attend later this month. I have canceled my plans for both of these events. Just because I’m not living in fear, it doesn’t mean I want to take unwarranted risks in public. I have my next maintenance infusion in a couple of weeks, and I plan to be healthy when it is time to get that poison in my veins once again.
Another precaution I had taken was to cancel a plan to attend a parade in Sioux Falls. The charity cosplay group I am a part of planned to march in the St Patty’s Day parade. Initially, I had declined to join the event due to being busy at work. When I realized my schedule would allow it, I had possibly planned on attending the event. But then this whole coronavirus thing happened, and I realized going to the parade would probably not be smart for people with compromised immune systems such as me. In the end, it doesn’t matter because the parade organizers canceled the event anyhow.
Basically just avoiding large crowds
I guess all of my “precautions” could be summed up as “I’m avoiding large crowds.” Maybe if the virus spreads to a higher degree than it has, I may take more precautions. Even if that happens, I won’t live my life in fear. I’ll take extra precautions and keep living life how I want to live it. If I do take additional precautions, that will likely involve spending more time with the wife and kids, so that might not be so bad.
Song of the day: Don’t Stop Believing
Why not go back to Journey for some inspirational music. I think that is the prescription for all the negativity going on in social media right now.
Bonus Song: Hysteria
Ever since this coronavirus thing hit the media, I’ve had the song hysteria stuck in my head. Different people react in different ways to virus outbreaks. The only thing I wish would change is the media. I believe certain media outlets have exaggerated the virus outbreak for ratings.. This also happens to be a good love song from Def Leppard.
February 4th is World Cancer Day. I had planned on doing a big post about World Cancer Day and what people can do to help others with cancer. But after looking at my site statistics, I see that last year’s World Cancer Day post I wrote was viewed and shared by a lot of people. In that post, I shared an infographic with some signs and symptoms people should be on the lookout for to possibly detect cancer. This year I will once again share that graphic. I know I had many symptoms, yet I refused to go to the doctor. Had I gone to a doctor sooner, I might have had more treatment options. Hopefully, seeing this infographic may help someone get to the doctor and detect any cancer before it is too late.
Earlier this week I posted about the financial burden of cancer. I posted part of my financial burden story so other cancer patients could understand they are not alone. Since that time I have received many messages from cancer patients asking if I knew how they could get financial help. In this post I will briefly mention just a few ways to get some financial assistance. This list is not even close to exhaustive, and I will probably blog on other ways in the future as I discover them.
A lot of cancer patients I’ve spoken with have mentioned that the initial diagnosis and treatment is what really hits them the hardest; financially speaking that is. It is during this period that many cancer patients are unable to work full-time, have medical bills piling up, and tend to get behind on other bills. For some of these people fundraisers were the best way to get past this burden.
I won’t write too much about fundraisers. In the future I plan to do a bigger post about how to do successful fundraising. But from what I’ve learned it is very important to have some sort of third party to truly get a fundraiser to work. That may be good family, friends, coworkers, churches, or local charity organizations. Without help from others I’ve been told fundraisers tend to fizzle.
Voluntary and nonprofit organizations
For many people fundraising is not an option. But there are many organizations out there to help cancer patients financially. I would suggest anyone looking for financial assistance to do a web search including the name of their particular cancer along with the words “financial assistance”. There are an amazing number of organizations out there trying to reach out to cancer patients with information, support groups, and financial support.
My particular flavor of cancer is non-Hodgkin’s follicular lymphoma. When I searched “non-Hodgkin’s follicular lymphoma financial assistance” I found an organization called the Leukemia & Lymphoma Society (LLS). LLS is a great resource for those of us dealing with blood cancers. One small part of what LLS does is provide financial support to those in need. There are quite a number of programs available through the LLS. These programs include (but are not limited to) a co-pay assistance program, a $100 stipend for those being actively treated, a patient travel assistance program (which is currently fully subscribed), and a $500 stipend for urgent needs. Not all of these programs are available for everyone. But even it they are not available it is worth searching out similar organization on the web. The time put into searching for financial assistance can be well worth it.
Another resource is the Cancer Financial Assistance Coalition (CFAC). CFAC can help when searching for financial support. At this site you can search for organizations providing financial assistance in the United States. The search takes your location and diagnosis, then it lists organizations which provide financial assistance meeting your criteria. I’ve noticed LLS actually comes up as one of the organizations when I search my diagnosis. Going to this site may be well worth time for cancer patients in need of financial assistance.
Organizations outside of the United States
The organizations I spoke about above were focused on cancer patients in the United States. Through online support groups I’ve heard many other countries have organizations specific to them. An easy way to find some of these organizations is to search your type of cancer with “financial assistance” and your country. Here are a few examples using the countries of people I know who read this blog:
Canada: Lymphoma Canada – This organization has some good resources to assist with prescription drug coverage.
England: Macmillan Cancer Support – This organization has some good financial support resources. I’ve noticed they also include a support line to connect with a financial guide to figure out finance options available.
Australia: Cancer Council – This organization can put people in Australia in touch with local organization to provide financial counseling. I’ve also noticed they can assist with transportation for those going through cancer treatments.
The above list is only a small sample of what I was able to find online. I think the important thing to remember is that there are organisations out there that can help! These organizations are also in need of volunteer or donations for anyone looking to help out.
Financial Lifestyle Changes
Even though I am mentioning this last, making some lifestyle financial adjustments is probably the most important step to take when being financially burdened with life-changing conditions such as cancer. Most of us going through cancer end up making changes in how we live from a health perspective. This is good, and many of us probably should have made some of these changes sooner. But I have found it is just as important to make financial lifestyle changes.
Someone I respect a lot mentioned she has to budget each year with the plan that all out of pocket maximum will be used. I think this is great advice. At first I thought “well, we already planned on doing that”. That is kinda true, and kinda not true. We had planned on budgeting this into our personal finances, but we haven’t actually sat down and determined how much that will be. It is quite likely as a family we will have to stop spending money on other areas of our life in order to accomplish this. My family had already started down the path of re-prioritizing our finances a couple of years ago, but now it is time to actually come up with our plan. More importantly we need to stick with that plan. Some of the changes we have made or plan to make include:
Going camping. This is a great way to vacation on a budget.
Eating out less often. We have already dramatically reduced the amount of money we spend by eating out less often. I believe if we work even harder we can reduce our food costs even further.
Buying less stuff. In the modern world there is so much stuff that can be bought. A lot of this stuff simply isn’t used. I’m trying become that grumpy old dad that by default says no to buying anything new unless a good reason is given to do so.
Cutting down on non-essential entertainment. For Cable TV we cut that down to just the basic package. We do still have Cable, mostly so we can view the local news and weather. At the same time we have cut going to the movies down to a rarity. To make up for this we watch movies on Netflix or Amazon Prime. That move alone has saved us hundreds of dollars per year. Another change has been to stop traveling to large concerts and instead going to local smaller concerts. I spend a fraction of the money going to smaller events, and still have a good time doing so. Cutting down entertainment expenses doesn’t mean getting rid of entertainment.
There are other changes we have made or plan to make. But I think the above items give an idea of what those of us with a chronic condition have to consider. Yes cancer sucks! Yes we have to make changes because of cancer! But that doesn’t mean we still can’t live life to its fullest. It just means we might have to make some adjustments; especially on the financial side.
I’ve rambled long enough
I see that I’ve already written well over a thousand words, a bit of a no-no according some blog experts. Really all I wanted to say in this post is that for anyone suffering financial hardships due to cancer that there are ways to get some relief. This can be through fundraisers or by getting help from voluntary and nonprofit organizations. At the same time it is important for those of us suffering a chronic condition (such as lymphoma) to understand that certain financial lifestyle changes are also necessary. In the future I hope to do posts highlighting other financial options available to cancer patients.
Today’s Song – With a little help from my friends!
I’ve shared the song With a Little Help From My Friends on this site a few times. Usually I prefer the great cover by Joe Cocker as opposed the original Beatles version (which is also great). Today I thought I would share a version performed by Paul McCartney and Ringo Star about a decade ago.
This is actually more of a love song. But writing about financial matters brought this Barenaked Ladies recording to mind.
Today, February 4th, is World Cancer Day. According to the #WorldCancerDay website, this day was created coming out of the World Summit Against Cancer for the New Millennium in Paris on Februrary 4, 2000. The theme for 2019 through 2021 is #IAmAndIWill. This theme is meant to empower those impacted by cancer to take action. Doing this blog I feel I have taken a large step in empowering myself in the battle against cancer.
While browsing the World Cancer Day website I found a great infographic about the signs and symptoms of cancer:
Leading up to my diagnosis of cancer I experienced some of the above symptoms. The main symptom I experienced was a large lump in my neck. This was actually one of many lymph nodes that could be detected by pressing on them with my hands; although I didn’t realize it at the time. I also experienced major breathing problems, fatigue, and weight loss. Just prior to starting chemotherapy I experienced night sweats so bad that my pillow would be soaked.
I would recommend anyone experiencing any of the symptoms listed in the infographic above to visit their doctor to determine if cancer may be the culprit. Some cancers are more easily treated when detected early. But then other cancers, such as my particular flavor of cancer non-Hodgkin’s follicular lymphoma, is currently incurable and is not generally treated early unless the lymphoma is impacting quality of life. No matter what it is important to detect and come up with a treatment plan for cancer as soon as possible. Doing so will increase the chance of being a cancer survivor.
I have cancer, hence why I am writing this blog. My actual diagnosis is Grade 2 Follicular Lymphoma, a type of non-Hodkin’s lymphoma. Even before I knew what all of that meant I thought it sounded bad. Over the last couple of months I’ve come to find out that some other people don’t think it sounds as bad as it is. I will expand upon that in this post.
I should mention the origins of this post actually came about due a support-group conference call I was on earlier this afternoon. A group from Illinois invited me to attend their teleconference and speak about my experiences blogging. I enjoyed the chance to interact with other cancer patients and hear other stories. One topic that came up during this teleconference was dealing with people who perceive blood cancers, especially lymphoma, as a “fake cancer”. This wasn’t the first time I’ve heard the term. Actually it comes up a lot in various support groups. Blood cancer patients, again especially lymphoma patients, are often treated differently from other cancer patients. It is an odd occurrence I probably would not have believed if I hadn’t seen it first hand.
One of the problems I believe is that the average person simply cannot relate to lymphoma. Lymphoma is categorized as a blood cancer, but it is the actual lymphatic system which is infected with cancer. How many people (other than doctors) actually know what the lymphatic system is or what it does? I’ve come to find out very few people do. When people think of cancer they think of breasts, lungs, prostates, or some part of the body that can be identified. I’ve had people give me blank stares when I told them I had multiple lymph nodes which had become swollen due to cancer. Actually more than once I’ve had people say “oh you have one of the good cancers” when I try to explain my condition. Every time that leaves me silent. I still haven’t come up with a good response to that. But I remember most people really don’t know what the lymphatic system is and they really don’t know how to relate.
Another problem is that most lymphoma patients, including myself, usually look pretty good. Even after four rounds of chemotherapy I have had multiple people tell me I look great. All of my pain and scars are on the inside. There aren’t any scars or physical signs advertising the fact that I have anything major going on with my body. Actually in my case I probably look better than I did prior to starting chemo due to the lymph node that was restricting my breathing. Now that I can breathe again I’ve been told my color looks better than it has in months. Unless I tell people that every bone in my body hurts, especially my shoulders and lower back, they don’t realize I even have any pain. I do a good job of trying to hide that pain.
I have found a way to get more people to understand I have a “bad” cancer. All I have to do is say the cancer has spread to my bones, which it has. Actually that is probably what is causing most of my pain. As soon as I tell people the cancer has moved into my bones they will say something like “oh my gosh, I’m sorry” or “oh wow, you really do have a serious cancer”. Like I mentioned above people need something to relate to, and bones are definitely something people have heard of.
Don’t get me wrong, I am not writing this post to complain. I do think my situation could be a lot worse. But I think it is important to let other lymphoma patients know they are not alone in how their diagnosis is perceived by some people. I really don’t think any of the people acting as if lymphoma is a lesser cancer are trying to downplay the cancer. Instead I think they have problems relating to the type of cancer we have so instinctively assume or hope it is better than other more well-known types of cancer.
Yesterday I was speaking to a friend and he asked me whether I was annoyed that breast cancer awareness gets its own month. The simple answer to this questions is no, I really don’t mind that breast cancer gets its own month. But since I am a blogger and like to ramble about anything I will provide a longer answer below.
First, I think it is great how the breast cancer awareness organizations have brought so much attention to their cause. The marketing efforts by these organizations have been insanely successful. When I see any pink item I immediately think of breast cancer. Every time I use my pink five-gallon bucket from Runnings I am reminded of breast cancer. Whenever I see someone in a pink t-shirt I think of breast cancer. I tip my pink hat to these organizations for having such a huge impact on breast cancer awareness.
Not only are these organizations raising awareness of breast cancer, they are also raising massive amounts of money to research and battle breast cancer. As someone with a type of blood cancer which is currently incurable, I have hope research will offer me a way in the future to rid myself of cancer. I was just reading about a cool new wearable device that will allow breast cancer patients to be monitored by light pulses to see the real-time effects of chemotherapy. If the trials of this device are successful it will help chemo patients with other forms of cancer. That would include those with blood cancer such as my myself. The funding for this research comes from The American Cancer Society, which of course benefits tremendously from Breast Cancer Awareness Month. Research done into any type of cancer has the potential to help all cancer patients.
I should also mention that breast cancer is not the only cancer with its own awareness month. Below is a calendar from Cancer101 website showing the different cancer awareness months and their corresponding ribbon color. My cancer type lymphoma has a lime-green ribbon and has the month of September as its awareness month (along with a LOT of other types of cancer). Personally I’m not really into these awareness ribbons, but I do see the value of them for raising awareness.
I have communicated with some cancer patients who are somewhat annoyed that breast cancer seems to get all the attention. Personally I prefer to look at how every cancer patient benefits from any attention brought to cancer awareness, even if it is a type I don’t have. Life is too short to bring identity politics into such an important issue.