Paul's Heart

Life As A Dad, And A Survivor

Lymphoma – Support And Information


There is not doubt, that the diagnosis of any cancer, will often leave the patient with a feeling of isolation.  After all, a diagnosis polarizes all attention to one person, the person diagnosed.  Nothing and no one else matters.  But that does not mean that others will not be affected by the diagnosis.  Before I get to that…

There is a world of information about lymphoma available today that was not when I was diagnosed.  All I was able to do, was to try and research, via news records at libraries for success stories on Hodgkin’s Lymphoma.  Needless to say, that took up a lot of time, and really only produced on story, which was about Carl Nelson, a football player for the New York Giants.  He had survived Hodgkin’s Disease.

But the majority of support came in the way of two counselors that I had come across.  John was a giant redwood of a man towering over me by at least two feet, but with a very soft heart.  He bore the initial brunt of my venting as I went through the various stages of Kubler-Ross, (anger, denial, bargaining, depression, acceptance).  Later I would meet Ilona who would be with me through my chemotherapy days.  Sadly, she died a few years ago with her own battle of cancer, such cruel irony.  But I did not just have counselors, my oncology nurse is the only reason I was able to get through my treatments at all.  Her comfort to me, was not as a nurse to a patient, but almost as a son as I am pretty sure I was young enough to be her son.

Family can play a big role in support as well, but it can get very complicated.  Depending on the family member, you can find acceptance and true support, or possibly denial, avoidance, and even shame.  You have to remember, that for many older family members, they are only likely to know one thing about cancer, “everybody dies from it” or they can “catch cancer.”  I have already addressed that in prior posts.  For younger family members like young children, it is critical to be sensitive to what they hear about cancer.  They can be very quick to believe that a person will die if they hear that even just one other person had died.  Siblings and parents are profoundly affected by the diagnosis of cancer and I feel are probably the best source of support.

The most important support from a family member is going to be that of a significant other.  That person is going to be with you most likely every step of the way.  But just as a cancer patient can feel alone and isolated, so can the significant other who is thrown into the position of caregiver.  Not only does the patient surrender their life and whatever they were doing, but now, so is the significant other who otherwise has done nothing to deserve having to sacrifice their life and activities.  This can lead to resentment, and often does.  Which is why it is so important to keep the lines of communication open, and your minds.  Cancer is a difficult thing to deal with alone.

As I mentioned, I was limited with the support I could find.  Today, there is literally a whole world out there of information and support.  I have links listed on this page to organizations, support groups, and other information about dealing with Lymphoma.  But just as I offer in my disclaimer, I must remind you, it is important that realize who is your doctor, who knows your actual situation.  Those are the ones that you ultimately need to listen to, and if you have questions, ask.  The links that I provide are very good with that kind of support, making sure that you realize we are not doctors, will never give out medical advice, just personal experience and information.

I am glad that you have found “Paul’s Heart.”  It is a start to finding support and information that I know would have been beneficial to me had I had it back then.

Treatment Options For Hodgkin’s Lymphoma


Medicine has come a long way in the 25 years since I was treated.  But medicine has a long way to go.  While many cancers have high cure rates, often those cures have come at a cost because of the late developing side effects, hence “Paul’s Heart.”  But I am able to tell you, that in spite of my treatment options now pretty much obsolete, or no used when no other choice, treatments today, while safer, are not 100% safe.  The newer treatments still produce remissions, but also still allow recurrences.  But also in some rare cases, lethal incidents.

Current options have increased dramatically.  Where it used to be believed that Hodgkin’s could be treated with radiation therapy alone, medicine advanced to chemotherapy, and today, other alternatives.

The first option I chose, whether it was the correct one or not (my doctors recommended chemo followed by choice), I chose to do radiation therapy alone.  If radiation did not work, then I would have to go forward with chemotherapy, but if it did, I felt that I would not have to endure the stereotypical nasty side effects of chemo.  After all, in my mind, I had reduced radiation therapy to nothing more than just 30 days of x-rays.  And I could handle that.

Now, there is a big difference between how radiation therapy is administered today and back in 1989.  I was given 30 treatments, totaling 4050 cGy, the unit used to measure.  To the common person, this number means nothing.  But to anyone who works with radiation knows, as does medicine today, this level is four times the maximum lifetime exposure to ionized radiation.  But as far as medicine was concerned back then, it cured Hodgkin’s Lymphoma.  But ask anyone who was treated with radiation prior to the 1990’s, it did more than just cure our Hodgkin’s, decades later, long after we were not to have survived more than five years, and we will tell you the medical nightmares that our bodies have become (see “CABG – Not Just A Leafy Green Vegetable” for my story).

Fortunately, in the 21st century, medicine has learned that it can cure Hodgkin’s with the same success, using less radiation, and more defined instead of the “scattered field” technique like was used on me.  I simply laid on a table, and was hit with a radioactive beam from my jawline to my lower abdomen.  In other words, a scattered field.  My body got radiation to areas that were otherwise healthy, with no sign of Hodgkin’s.  Doctors now believe that they can treat more successfully with less.

I ended up having to go through chemotherapy anyway.  While it was not the horrific experience that I remember seeing broadcast on television and movies, it was still rough.  Depending on the chemotherapy cocktails used, there are several options, chemo is meant to do only one thing, kill cancer cells.  But since chemo is not intelligent, it cannot just kill cancer cells, so it also impacts healthy cells.  This is one of the reasons many cancer patients experience hair loss.  Fortunately, the hair does grow back, and while we love our hair, there is no treatment for the hair loss during chemo.  However, healthy red and white blood cells are needed for our survival.

Back in my day, we were not treated if our blood levels were too low.  But today, patients can get booster injections to increase red and white blood cells to allow the best opportunity for treatments to continue uninterrupted.

Of course the image that most people have are patients hooked up to IV lines, in hospital beds.  I was treated as an outpatient, in a dungeon-like environment.  Almost twenty minutes each treatment  was spent just finding a healthy vein to use as the chemotherapy had reaked havoc on my veins each treatment.  Today, patients sit in chemo suites with other cancer patients, watching TV, listening to guest musicians play songs, visits from therapy dogs, and eat lunch.  And to make the injection process easier, ports are surgically implanted to all consistent and simple access for the IV line to carry the chemotherapy.  Oral chemotherapy may also be included.

While both radiation and chemo have improved in both safety and success, it is still not giving 100% survival.  I do not know that much about the following options that are now available, but they are to be kept in mind, that progress is being made:

immunotherapy – using vaccines and other methods to make your body use its own immune system to fight the disease

bone marrow transplants/stem cell transplants – using the patient’s own marrow, usually combined with higher doses of chemo

allogenic transplant – using stem cells from a donor, usually sibling, or matched donor, combined with higher doses of chemo

clinical trials – these are the newest of possibilities, little known about long term side effects, and the treatments have not been approved by the FDA as official treatments, but for patients who have no other hope, perhaps the best option available.

alternative therapy – this is a tough one, because I do believe that there are options from nature itself.  I strongly believe however, in going by what has been scientifically proven first.  Then, and only then, I will concede to a complimentary therapy which uses conventional means, along with alternative – but only, and ONLY after consulting with the treating oncologist.  Alternative medicines, even vitamins can have profound impact on the effectiveness of chemotherapy and the body.  And while not to be a killjoy with alternatives, if that is the only chance left, then you should go for it, if that is what you believe.

Yes, progress has been made.  But there is still so much more that can be done, and needs to be done.

Lymphoma – Rare And Complicated


Hodgkin’s Lymphoma 3bNS

That is a fairly simple grouping of letters and words.  But they are much more complicated than that.  Yes, that was my diagnosis, but it would also determine the treatment modes to use.

There are so many determining factors in how to fight this rare cancer.  The cancer itself is rare enough, affecting just 1% of all cancer diagnosis.  But when broken down…the decision on which treatments to use, and which side effects to risk, the individual characteristics will make the biggest impact working along side the body’s own physiological issues (height, weight, metabolism).

The obvious part of the equation, is figuring out Hodgkin’s.  For me, it was seeing the Reed-Steinberg cells in the pathology from biopsies that were done.  There are other diagnostics for claiming Hodgkin’s, but all involve B lymphocytes – a white blood cell meant to help the body dispose of garbage in our bodies (I have simplified the definition).  Easiest way to think about it, your lymph system is what fights your illnesses.  B lymphocytes help that process along.

Once the diagnosis is made, then the classification and stage needs to be determined.

There are four types of Hodgkin’s.  Ranked in order of commonness, most common is Nodular Sclerosing, or as you saw in my grouping, NS.  NS makes up about 75% of Hodgkin’s diagnosis, followed by lymphocyte predominant, mixed cellularity, and the least common, lymphocyte depleted which makes up only 5% of the diagnosis.

Staging is also important because not only do you need to know how aggressive the disease is, you need to know where it is located.  With numbers ranking 1-4, with one being the least serious to 4 being the most serious, here are their definitions:

Stage 1     only one lymph node or area is involved

Stage 2     two or more nodes or areas located on the same side of the diaphragm

Stage 3     disease found in nodes on both sides of the diaphragm (even though the spleen is an organ, it is considered part of the lymph area.

Stage 4     other areas of the body involved (like lungs, liver, bone marrow)

I put Stage 3 in my title because that is what is says on my reports.  But knowing that my spleen was fully involved, pretty much seals it that I was stage 4.  But I have one more letter in my equation above, which really only serves to say it is bad, or worse.

A simple two letters are added, either “a” or “b”.  Which means “with symptoms” or “without symptoms”.  These particular symptoms that are being referred to are common, fever, night sweats, or significant weight loss.

Once the doctors have diagnosed, classified, and staged the Hodgkin’s, then it is time to determine the best mode of treatment.

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