The first round of maintenance therapy is knocked out

Today I had my first round of maintenance therapy with Rituximab. This is the first of many infusions over the next two years; I will have these Rituxin infusions every eight weeks. Earlier this week I blogged about my reasoning for doing maintenance. For today’s post I thought I would share my maintenance day experience. Many of us going into maintenance for the first time wonder what it will be like and I hope sharing my experience will help others.

Pretreatment blood draw and vitals check

This visit began just the same as my chemo appointments. First I had to get a few vials of blood drawn. Actually the nurse assigned to me today is new to oncology floor, so she put in an order for the lab to come draw blood from my arm. I didn’t say anything. But as soon as the lab tech came into my room another nurse came in and said “Ken, you know better. We use your port.” So then the newer nurse got her first opportunity to insert the IV line into the port on my chest. She actually did really good. The port on my chest sticks way out, making it easy to see the three dots marking where the needle gets inserted. Most important, she stuck the needle in fast so it wouldn’t hurt, just a slight sting which I’ve gotten used to from doing chemo.

Once the port line was installed she couldn’t get a blood return right away. Oh no, I thought, my retracted port is back. My port seemed to work good for blood draws during my biopsy, so I thought any port issues were a thing of the past. Luckily after a couple of flushes the port was allowing blood to flow back into the syringe. The nurse was then able to fill all three blood vials with no problems.

Then, just as during chemo, my vitals were all checked. The only vital kinda off was my temperature. I was running a temp just over 99 degrees. I have a sick kid at home right now and it makes me wonder if I might get what he has; oh goody! My blood pressure was a little bit high for me at 122/80. I guess I was nervous about maintenance therapy.

Nurse visit

After the blood tests were complete the CNP came in for a short visit. She let me know all my blood counts looked good. The only number that was very high was my glucose. I’ve been trying very hard to cut down on sugar. But it is hard! I’ll just have to try harder! It is especially true I need to cut out the sugars because I need to lose the weight I gained while on chemo. Steroids and I don’t mix well!

The CNP also passed on some good news from my oncologist. After looking at the bone marrow biopsy results she determined I wouldn’t need to do the bone marrow rebuilding medicine called Xgeva anymore. I am really glad to be done with that shot. I one time forgot to take Claritin when getting an Xgeva injection and it hurt so bad I thought I would need an ER visit. That is a good tip for anyone taking Xgeva or Neulasta shots: Claritin works!

The pretreatment drugs

Just as when I had chemo, I had to take certain drugs before I could actually get my Rituxmab infusion. First I had to take two Tylenol caplets. As I was taking my Tylenol something occurred to me: I hadn’t taken more than a few Tylenol or Ibuprofen for over a month! The pain I would experience over the last year seemed to have subsided down to almost nothing! I had gotten very used to pain over the last year, but somehow I missed out on the fact it was nearly gone.

Then I had the saline IV bag hooked up. That stays hooked up the whole time when receiving IV drugs. After the saline drip was started I was given a small bag of steroids. It took about twenty minutes for the steroid bag I believe. Part of me hoped I wouldn’t have to need steroids anymore. I know from past experience that steroids make me very hungry and moody.

Finally I had a shot of Benadryl injected into my IV line. During one of my chemo visits a nurse told me I only have a half does of Benadryl. I can’t imagine having a full dose. That half dose almost knocks me out instantly and I’m in a blur for the rest of the visit.

From the research I’ve done on chemo and maintenance treatment the trifecta use of Tylenol, steroids, and Benadryl will prevent most of the side-effects of Rituximab for most patients. Luckily that seems to be the case for me. If I would have started to show side effects the nurse let me know they would likely have increased the Benadryl dosage.

The actual Rituximab infusion

Honestly I don’t remember much of the infusion experience. Like I said above the Benadryl seems to put me in a daze. The actual infusion took 90 minutes. The nurses did a slower drip for the first half an hour to ensure I wouldn’t experience any nasty side-effects. Then it was put out much quicker for the last hour. One of the nurses confirmed I was getting the 1,000 mg bag of Rituxin; which is the same as I had during chemo.

The only real side-effect I experienced was a drop in blood pressure. This was the same thing that happened to me during chemo. I can’t remember what my last reading was, but I know my bottom number was 50. If that is the worse side-effect I’ll have from Rituximab I can live with that.

After maintenance I took a nap

Today my brother-in-law was gracious enough to be my driver (the wife and I work in a tax office, bad time of year for things like this). On the way home I was still in a Benadryl daze. I ate my lunch and planned to take a short nap. Four hours later I woke up and barely had time to get my middle child picked up from basketball practice. Luckily that nap had completely gotten rid of the daze. It just happened to be a bigger nap than I had planned on.

Maintenance was really kind of a non-event

Even though this post ended up being over 1000 words long, I can’t really say much actually happened during my maintenance treatment. In this post I basically shared the whole experience. Hopefully seeing how much of a non-experience maintenance was for me will help others going into maintenance treatment. Going into these situations for the first time can be stressful and learning how it goes for others can help.

Today’s Song: Carry on my Wayward Son

I had a surprise visit from my oldest Son visit today while receiving my Rituxin infusion. He happens to work in the kitchen at the hospital. It was truly great having him come by and say hello. As I think about him this classic song from Kansas comes to mind. As he is growing into quite the good young man I see him experiencing the same bouts of confusion and self-doubt we all went through at that age. He doesn’t realize how good of a person he is really is. This song explains that well:

Bonus Song: Dustin the Wind

This is one of those inside jokes for us. When Dustin was a kid he used to think Dust In the Wind was actually Dustin the Wind and ask me stop calling him the wind when I would sing it. This is a great live/unplugged version of the song.

Why I’ve decided to do maintenance therapy

Later this week I start my first round of maintenance therapy treatments. Choosing whether to actually do maintenance infusions was tough for me. I’ve spoken with other lymphoma cancer patients who also struggled with whether to do maintenance infusions. In this post I will briefly write about what maintenance is and why I am choosing to do maintenance.

What is maintenance therapy

Here is what Lymphoma Action ( a great site out of the UK) has to say about maintenance therapy:

Maintenance therapy is sometimes given after initial treatment has put the lymphoma into remission (no evidence of disease). It is used to make the remission last as long as possible by suppressing any lymphoma cells that can’t be detected by scans after the main treatment has finished.

Chemotherapy is sometimes used as maintenance therapy; however, immunotherapy (treatment with antibodies) is the most common type of maintenance therapy for people with lymphoma.

In my research I’ve found many studies that show maintenance therapy does extend remission for a good number of people. One things maintenance therapy does not do however is extend the expected lifespan of lymphoma patients. Basically maintenance therapy extends the time between the bigger treatment options, such as chemotherapy.

Rituximab is the maintenance therapy drug I’ll be using

Currently Rituximab is the standard drug used for maintenance therapy. This drug is a type of immunotherapy, which means it uses antibodies for treatment. In particular Rituximab is a monoclonal antibody. When writing about my chemo regiment R-CHOP I included this explanation of monoclonal antibodies from cancer research UK:

Monoclonal antibodies target proteins on the surface of cells. Rituximab targets a protein known as CD20. CD20 is found on white blood cells called B cells. It is the B cells that are cancerous in the most common type of non-Hodgkin lymphoma.

Rituximab attaches itself to the B cells and marks them. The cells of the immune system recognize the marked cells and kill them.

I still think it is a very cool concept that a persons own immune system can be used to target cancer cells. Technically this is already supposed to happen, but sometimes the immune system just doesn’t attack cancer like it is designed to. Theoretically maintenance therapy will keep the lymphoma at bay if it begins to spread again.

My particular maintenance plan is to have an infusion every eight weeks for the next two years. That is a lot of sessions. Good thing I have my port!

Maintenance therapy sounds like a good thing, but it has a downside

The concept of maintenance therapy sounds like something every lymphoma patient would want to go through. Being able to push another round of chemotherapy farther into the future is a good thing. But maintenance therapy does have its downsides as well. Actually some countries don’t even offer maintenance therapy due to these downsides and the fact it isn’t proven effective for enough people.

One major downside of maintenance therapy is the side-effects of the drugs used. Rituximab is the standard drug used. The Mayo website has a list of dozens of known side-effects from Rituximab. Here is just part of the list, showing only the common side-effects:

  • Black, tarry stools
  • bleeding gums
  • bloating or swelling of the face, arms, hands, lower legs, or feet
  • blood in the urine or stools
  • blurred vision
  • body aches or pain
  • burning or stinging of the skin
  • chest pain
  • chills
  • confusion
  • cough
  • difficulty with breathing
  • dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
  • drowsiness
  • dry mouth
  • ear congestion
  • fever
  • flushed, dry skin
  • fruit-like breath odor
  • headache
  • hives or welts, itching, rash
  • increased hunger
  • increased thirst
  • increased urination
  • large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or genitals
  • lower back or side pain
  • nausea
  • nervousness
  • noisy breathing
  • pain or tenderness around the eyes and cheekbones
  • painful cold sores or blisters on the lips, nose, eyes, or genitals
  • painful or difficult urination
  • pale skin
  • pinpoint red spots on the skin
  • pounding in the ears
  • seizures
  • slow or fast heartbeat
  • sneezing
  • sore throat
  • sores, ulcers, or white spots in the mouth or on the lips
  • stomach pain
  • stuffy or runny nose
  • sweating
  • swelling of the tongue or throat
  • swollen glands
  • tightness of the chest
  • tingling of the hands or feet
  • troubled breathing with exertion
  • unusual bleeding or bruising
  • unusual tiredness or weakness
  • unusual weight gain or loss
  • vomiting

For anyone curious, that was was 52 common side-effects listed. That doesn’t even include the less common side-effects or other possible side-effects which have yet to actually be linked to rituxumab.

I noted above Rituximab was part of my chemo treatment, being the R part of R-CHOP. My very first round of chemo infusion had to be split into two days. The main reason for doing so was because Rituximab had to be injected very slowly the first time to see if I would react badly to the drug. I’ve heard stories from many lymphoma patients that will experience major side-effects such as their throat closing or major nausea. Before even taking Rituximab a dose of Benadryl is given to the patient, and even that is not enough to hold off side-effects for many people.

At the same time I’ve the stories of many patients on maintenance who have developed long-term health issues because of these infusions. The tiredness and beat-down feeling that comes from chemo seems to be extended by many people taking maintenance therapy. Some patients going through maintenance therapy will get sick constantly and appear to have compromised immune systems. I was actually just speaking with someone that had to stop maintenance therapy after two sessions due to their inability to work anymore. Maintenance therapy is not chemo, but it can be just as damaging to the body for many lymphoma patients.

There are other maintenance therapy drugs out there now. Plus, more are currently being developed. So far I haven’t ready about any without major side-effects. It seems to be a matter of finding the maintenance drug with the least side-effects for a particular person.

So why am I doing maintenance

After going through some of the downsides to maintenance therapy it would seem that nobody would willingly choose to go this route. But just like anything in life it is important to weigh the positives and negatives. I won’t go any further into the negatives, since I think the above paragraphs covered some of those well enough. Instead now I would like to focus on the positives.

First, maintenance therapy does help many patients go longer without treatments such as chemo. It is true that not all patients get a longer remission. But enough patients do that I feel it is worth the risk. If maintenance therapy is able to push my next treatment years into the future I find it worth it. By that time it’s possible a cure could be found for lymphoma. Or even if a cure is not found there may be newer and less invasive treatment options available. There have been a lot of advances in the diagnosis and treatment of lymphoma over the last twenty years. I would expect the next twenty years to see advances we can’t even conceive of at this time.

Second, not all patients on maintenance experience major long-term side-effects. Yes, Rituximab is a nasty drug with some very bad side-effects. But not all patients have the same experience. If I find that I am starting to experience some of the side-effects I’ve read about or heard from other lymphoma patients I will simply end maintenance treatments. Once maintenance treatments begin there is nothing that forces anyone to continue maintenance therapy in the future. This is one area of healthcare where we the patients can actually have some control over our treatment.

Finally, the main reason I am choosing to do maintenance therapy is because of my family. I want to be around to help my kids grow. I want to be there for Ashton as he is going through diagnosis for his health issues. I want to go to Lawson’s baseball games and support him as he takes a continued interest in music and starting a rock band. I want to watch Dustin grow as a young man and smile as he makes the same mistakes we all made as young adults. I want to be there with Mindy experiencing this all together. I took a vow that included “until death do us part” and I plan to make that as far off in the future as possible.

Actually when I first mentioned I was questioning whether to have maintenance Mindy gave me “the look” and the looked like she was going to cry. She acted as if I just said I was wondering whether to keep living. That isn’t what I said or meant. But she seemed shocked and almost angry with me because I wasn’t sure if I wanted to do maintenance therapy. That look had a lot to do with my decision to go ahead with maintenance. If there is anything at all I can do to possibly extend time in remission I will do so. Mindy is truly my soulmate and I want to ensure we have as much time together as possible.

Wednesday is the day

This Wednesday is the day scheduled for my first maintenance therapy. I will admit to having a little bit of nervousness about receiving this infusion. But since I made it through R-CHOP mostly OK (I am still very tired and weak two months later) I feel that Rituximab infusions should go OK. I just keep focusing on the fact I am doing this to hopefully extend quality time with my family.

Today’s song – Just Fishin’

Being around for my family is a big reason I am choosing to do maintenance. I think the song Just Fishin’ sums up part of my reasoning very well. This song from Trace Adkins really shows what is important: spending time with family and creating great memories.

Bonus song – Cats in the cradle

The bonus song is one I’m sure everyone knows. Part of the reason I want to do maintenance is so I can do things like play catch with my boys. I look forward to the day when I sit back and think “he’d grown up just like me, my boy was just like me”.

The EMG experience

The equipment used on Ashton was much more high tech than this old medical device.

Sometimes cancer patients experience problems such as peripheral neuropathy as a result of treatment; or even as a result of the cancer itself. Such patients may need to have an EMG performed to diagnose the nephropathy. Earlier this week I had to take my son Ashton to the hospital in Sioux Falls in order to have an EMG performed. Fortunately Ashton does not have cancer and instead is being diagnosed for some sort of hypermobility. But since the EMG test performed on him is the same thing that would be done for cancer patients I thought it would be worthy to do a post about his EMG experience.

What is an EMG test and peripheral neuropathy?

Before going on it might be helpful to find out what these terms actually mean. Here is part of the definition of peripheral neuropathy from the Mayo website:

Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.

I was warned by the oncology nursing staff that chemo could actually cause peripheral neuropathy. When looking at the Mayo page about peripheral neuropathy I noticed one interesting possible cause which specifically mentions lymphoma:

Bone marrow disorders. These include abnormal protein in the blood (monoclonal gammopathies), a form of bone cancer (osteosclerotic myeloma), lymphoma and amyloidosis.

To diagnose peripheral neuropathy an EMG may be ordered. EMG stands for
Electromyography. Here is part of what Mayo has to say about an EMG:

Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.

In the next two sections I will share Ashton’s experience with two different parts of an EMG test.

Getting shocked – the nerve conduction study

The first part of the EMG test Ashton went through was the nerve conduction study. Ashton had both arms and legs tested in this part of the study. It began with one of his arms. The tech hooked up electrode stickers to his hand, and then various places on his arm. An electric shock was sent through his arm.

Ashton was very nervous about this part of the test. The tech reassured him it was very little electricity, and it would start low and only increase in amplitude as necessary. To show Ashton it was OK, the tech used the probe on himself. I’m not really sure that made Ashton feel better.

I’m not sure how many pathways the tech tested on each limb, but it seemed to be quite a few. Ashton didn’t seem to mind most of the shocks. The only ones on his arm he said hurt occurred when the tech did the funny bone and the wrist. On his legs Ashton only complained about the shock right at his ankles. Other than those few areas, Ashton admitted the test wasn’t so bad.

Getting poked – the needle EMG

Ashton was even more noticeably nervous about the second EMG test. In the needle EMG the doctor used a needle to poke into Ashton’s muscle. The doctor would then measure the electrical activity of that muscle. Ashton was shown a needle to ensure him that it was not big and won’t leave a big hole. The needle itself looks similar to one used in acupuncture. This test apparently records how active a muscle is.

Luckily only one arm and one leg needed to be tested. I’m not sure how many pokes the doctor did, but I bet if I asked Ashton he could tell me. Ashton said he definitely felt the needle go into his muscle. When the doctor had to move the needle around in the muscle Ashton complained it was very sharp. During this part of the test Ashton had to either relax muscles or move joints according to what the doctor wanted. While this test was shorter than the first, Ashton said it seemed to take much longer.

There was only one point where I think the pain was more than Ashton was ready for. That was in Ashton’s calf and he asked if the doctor could hurry. There was also a little bit of blood coming out of the hole in the calf. None of the other punctures left any sign of a needle being used. At the end Ashton said he would prefer not to do that test ever again.

Ashton’s results

I don’t have his official results in front of me. But I do know what the doctor said. In the first EMG test Ashton had electricity ran through his nerves. According to the doctor this part of the test went very well and there is no sign of problems with the nerve pathways tested. This was really good news, since the tingling and numbness Ashton often feels in his hands and feet are not a result of these nerves having issues.

Ashton also did well in the second part of the test. Since the doctor couldn’t find any muscle issues in the arm or leg tested, he decided it was not necessary to test the other arm or leg. This was not surprising. When being treated by doctors it has always been noted that his muscles seem to be strong, and that something else such as ligaments were likely his problem.

On one hand it is good that no problems were found in either EMG test. The results further confirm his hypermobility and pain issues are likely caused in the joints. But at the same time we still don’t have any real answers as to why he has such extreme pain and numbness. His latest round of genetic testing should be done soon. Hopefully those results will give some answers.

Conclusion

Even though Ashton does not have cancer I thought his experience would be worth sharing on this blog. Many cancer patients experience peripheral neuropathy and may have to go through an EMG test. Despite Ashton experiencing some very short-term pain, it was well worth getting the test done. In his case the EMG was done to rule out certain conditions. With cancer patients it is more likely the EMG would be done to confirm and come up with a treatment plan for conditions such as peripheral neuropathy.

Today’s Song – Hurt

After seeing Ashton go through pain I couldn’t help but think of the classic Nine Inch Nails song Hurt. Technically the song is more about regret. But I thought the Johnny Cash cover of the song was well worth sharing in this post.

Bonus song – I won’t back down

Johnny Cash did some great covers in his American Recording series. One of my personal favorites happens to be Cash’s cover of Tom Petty’s song I Won’t Back Down. Ashton also happens to know and like this song because it was featured in the movie Barnyard.

Being thankful – a look back at the benefit

A heartfelt thank-you from my family to everyone out there!

This previous weekend a benefit was held to help my family out. With three family members dealing with medical issues all at once we have become financially overwhelmed. I am happy to say the benefit was a success. In this post (which I will try to keep short), I will share part of my experience of the benefit and try to express the thankfulness I feel.

Nerves were shot prior to the benefit

Prior to the benefit my nerves were shot. I am used to being the person that helps other people. It is a new experience for me to rely on the good hearts of others. I kept wondering if anyone would even show up. I kept wondering if people would think that because we own a business that we really didn’t need help. I kept wondering if maybe we weren’t deserving of help since there are other families out there in need of help. All of these thoughts, and more, kept running through my head.

Of course it didn’t help that on the day of benefit I was having a one of my rough days. I am sleeping very poorly and my energy levels on certain days are very low. In order to make it through that day I ended up taking energy drinks. I don’t really like drinking those. But before the benefit I had to drive an hour to watch my middle son in a basketball tournament. Actually going to the tournament probably calmed my nerves down more than anything. The boys played three great games. But as soon as the tournament was done I was back to being on the edge of what almost felt like a nervous breakdown.

On a side-note I want to mention that the coach brought some of the players to the benefit. This was such a pleasant surprise. It really brightened up Lawson’s evening, and mine.

The benefit

The benefit itself went really well. I was told there were about two hundred and sixty people in attendance. It was all very overwhelming. I spent the whole time trying to go from person to person and thank them for coming. I didn’t make it to everyone, which I regret. Many times I repeated how we were all doing. In particular I had to constantly try to help people understand what is wrong with our youngest son Ashton. He has some sort of hypermobility, which he is still going through the diagnosis process. It is hard for people to grasp a condition which places Ashton in a wheelchair on certain days, and he appears to fine on other days.

At one point I had the microphone in order to introduce my family to the crowd and say thank-you. This was one of the hardest things I’ve ever tried to do. I had become so emotionally overwhelmed with the outpouring of love and support for my family that I was having a hard time speaking. When I tried to say thank-you I kept having tears form and found myself unable to get coherent words out. More than anything this benefit has helped me to understand there are still good people in the world.

How to show my grattitude

Another big worry of mine has been trying to figure out how to show my gratitude. We are working on thank-you cards and an ad in the local paper to thank people. But that seems so insufficient for the amount of support shown to my family. At the benefit I was speaking to a person I know a little bit. She is technically a client of my wife’s and I’ve met her a couple times over the years. She gave the answer I had been looking for as to how to best thank the community. Here is an approximation of what I remember her saying:

Ken, I’ve seen you and Mindy give to the community in many ways over the years. I know you guys have helped other families out. When you guys are back on your feet just continue to do so. That is all the thanks I need.

At the time I was still so overwhelmed from being at the benefit that I didn’t give it a lot of thought. But since then I have thought about it a lot. I agree. The best way for my family to give thanks is to continue helping others. This financial hump is hopefully a short-term condition. As we realign our finances and hopefully get back on firmer financial ground it will be possible to once again help others out. I can’t think of any better thank-you than to “pay it forward” when we are able to do so.

Time to end this post before I ramble too much

Really all I wanted to do in this post was to say thank-you to family, friends, and the community for the overwhelming support they have shown my family. I can’t find the words to properly show my gratitude. Instead I will continue to help others when we are back on our feet and try to live by a pay-it-forward lifestyle.

Today’s song – What a Wonderful World

Today’s song comes from the Great Satchmo, Louis Armstrong. I don’t think this song really needs an introduction. The song is so filled with hope and love that I feel it is appropriate for this post.

Bonus Song – Thank you

Doing a post about being thankful brought this great Led Zeppelin song to mind. This song is actually a love song and it sums up how much I love my wife and am very thankful to have her.

A few ways to get financial help with a cancer diagnosis

If only we could grow money.

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.

Fundraisers

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.

Bonus Song

This is actually more of a love song. But writing about financial matters brought this Barenaked Ladies recording to mind.

The financial burden of cancer

Last week I mentioned in a post that I would start blogging about topics requested by others. I have received a lot of good blog ideas and have them placed in the queue. By far the most requested topic has been about the financial cost of being diagnosed and treated for cancer. In this post I will briefly write about how cancer and other medical conditions within my family have become a financial burden. In a future post I will blog about places people can turn to that have become financially by financing cancer treatment.

First I should note that I have pretty good insurance. My family has an individual plan that we spend a lot of money on every month to ensure we have good coverage. Since my wife and I are self-employed we wanted to make sure we had a plan that would keep our family covered for anything unforeseeable, such as cancer. There have been a few times where the insurance company has denied chemo or scans. But I think that is unfortunately normal for all insurance companies; and after being resubmitted by the hospital staff each procedure has been pre-approved. Yet even with good insurance the costs are adding up.

Part of the financial burden comes from the out of pocket due from all of these procedures. While its true there is a cap on the out of pocket costs. This cap is much higher than I understood and the bills have been piling up. With three family members going through major medical issues in 2018 my family reached that out of pocket quite easily. Now that we are in a new year we are once again starting to reach that out of pocket fairly quickly. I really don’t see how anyone without good insurance is getting through major medical conditions without feeling overwhelmed by the financial burden. Each round of chemo costs over $30,000 for the drugs alone.

A larger part of the financial burden comes from working. Or rather from having to change work habits. My wife runs a fairly successful business focused on tax preparation, payroll, and bookkeeping. For the last decade I have worked with her at helping to grow this business. Last year she had her heart attack and had to slow down on how much she was able to work. At the same time I was having my health issues and was unable to put very much work in at the office. This meant having to hire an additional full-time staff member at the office to pick up some of the slack. Having this new staff member has helped tremendously and we are very glad to have her. But the addition of this staff member also meant a large increase in payroll; and towards the end of the year it meant the payroll that went to my wife and myself had to be reduced. That is one of the dangers of having a business which relies upon a large amount of its revenue during one season. Any unexpected changes toward the end of the year means the business owners may have to suffer financially.

And then of course there is the cost of traveling and hotels. Luckily so far all of my diagnosis and treatments have been done locally. But my youngest son has been traveling to St. Paul, MN, and Sioux Falls, SD, fairly regularly to diagnose his hypermobility issues. These trips costs us thousands of dollars in 2018. Each trip we tried to get a cheap hotel and eat fairly conservatively, but it is amazing how quickly money flies out when traveling. Plus, since Ashton is technically still undiagnosed there are costs which insurance simply won’t cover yet. One of those costs was getting him a new wheelchair during the fall of 2018. His new wheelchair has helped him tremendously on the days he is unable to walk, but it was a definite unexpected expense. Like most of these expenses we had to use a credit card. I don’t even look at my credit card statements anymore. There are simply too many cards which have become maxed out. We are hoping with some adjustments to our finances in 2019 that we should get some of these cards paid down.

Over the last few months I have spoken with a lot of cancer patients talking about their financial situations. Many of them are in worse situations than I am. One theme I have noticed though is that many cancer patients are going through multiple health issues just as my family is. Some cancer patients have other family members going through major health issues, such as is happening with my wife and youngest son. Or even more common is that cancer patients have other major health issues that may or may not be related to the cancer itself. These additional conditions put even more financial stress upon cancer patients. As I said above, I plan to write a post in the future about different ways cancer patients can get some financial relief.

Talking about the financial burden of cancer is not easy for me. Even harder has been accepting financial offers of help from others. This weekend there is a spaghetti benefit set up for my family. I am so nervous about this event. I am used to being the person helping other people while they are in need. It is uncomfortable having to rely upon the goodness of others. But at the same time I’ve had to learn to accept this help because of the disconnect notices from utilities, car loan companies, and other places we owe money. First and foremost we have to make sure our family is taken care of, and that would be very difficult to do if we don’t have power or a vehicle to get places.

As I said earlier in this post, in the future I will blog some resources cancer patients can utilize to help them with financial burdens. In this post I shared some of the financial burdens being placed upon my family. I am definitely not looking for anyone’s pity. Rather I am sharing this in the hopes that other cancer patients know they are not alone in feeling overwhelmed by the financial burdens being placed upon them.

Today’s song: I’m Busted

The first song that came to mind when doing this post was I’m Busted from Ray Charles. On YouTube I found an appearance of Ray Charles on the Johnny Cash show featuring this song. This is a great musical artifact and well worth sharing.

Bonus Song – Seven Spanish Angels

After playing the song with Ray Charles and Johnny Cash I couldn’t help but remember Ray Charles and Willie Nelson singing Seven Spanish Angels. This is such a beautiful song and I often think of it when a fellow cancer fighter loses their battle.

#WorldCancerDay Infographic: Cancer Signs and Symptoms

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:

World Cancer Day Campaign Material by Union for International Cancer Control (UICC) is licensed under a Creative Commons Attribution-ShareALike 4.0 International License.

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.

The future of DadAgainstCancer

I’ve had many people ask me if I will stop blogging about cancer now that I am in remission. The simple straightforward answer is no, I am not done blogging. Since I like to ramble on I will use the rest of this post to give a much longer answer as to what I will be doing on this blog.

First and foremost I will continue to document my experiences as a cancer patient. Unfortunately Non-Hodgkin’s Lymphoma cannot currently be cured. For the next two years I will be going through maintenance infusions, bone-marrow injections, and who knows what else. I will also document doctors visits which may or may not be related to my cancer. This includes my second sleep study and dealing with pulmonary issues.

Second, I will expand upon topics covered previously while on chemo. This includes insights from family members as to how they felt about my having cancer. I recently found out my chemo was experience was even harder on family members than I understood. They tried hard to hide their fears and put up with my wild steroid mood swings.

Third, I will be sharing stories of other cancer patients and survivors. In fact just today I came close to completing a deal with a cancer advocacy website to do a series of videos interviewing cancer patients and survivors. I am very excited about this opportunity. Right now it appears the videos will focus on how cancer impacts families, work, and other people around cancer patients. If the videos become popular enough I also hope to start a podcast dealing with the same topics.

Finally, I plan to take requests about blog topics. There are a few blog topics I already have in queue from requests. This includes posts on hair loss, dealing with family while on Prednisone, and learning how to cope with people who think you are already dead due to cancer. If anyone has something they would like me to blog about please feel free to use the contact me portion of the website. If it is a topic I don’t have a lot of personal experience with I will research it or call on an expert. We can all learn something new that way!

I would like to thank everyone who has been religiously reading this blog. Writing this blog has made my personal cancer experience go smoother. I hope it in some way has helped others who have been impacted by cancer.

The Futures So Bright, I Gotta Write Blogs!

I can’t go without a bonus song. Here is a song from the mid-80’s by Timbuk 3. Since being in remission I have had this song pop into my head a few times.

I’m in remission… most likely

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

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

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

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

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

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

Bonus Song – Feeling good again

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

Glad I wore the blue mask during chemo

No, I don’t normally blog with the blue mask on.

It has been almost a month since my last round of chemo. I wore the blue mask for a couple of weeks after the final round of chemo just to make sure I didn’t catch anything. At this point I am very glad I had been doing so. Yesterday I was taken down by a stomach flu bug of some type. The though of having this flu bug while on chemo makes me glad I wore the blue mask!

Actually last Halloween I blogged about my decision to wear the blue mask. At the time I felt the extra precaution of wearing the blue mask was worth attention it drew to me in public. During all six rounds of chemo I was pretty clockwork about using the blue mask and carrying hand sanitizer with me when I ventured out in public. Some chemo patients I’ve spoken with feel the blue mask is worthless. They may be right, but I feel comfortable with my decision to wear the mask. Going through a stomach flu like this during chemo would have been horrible, especially during the last few rounds as chemo got harder on my body.

I know some chemo patients struggle with the decision as to whether the blue mask is necessary. Personally I think it was worthwhile for me to wear the mask, especially since the flu and pertussis (whooping cough) have been going around. Yes I’ve heard some chemo patients say they made it through their treatments with no issues after deciding not to use the mask. But I’ve also heard of chemo patients being hospitalized by things such as the flu virus. In the end though it is up to each person to make their own person risk assessment.