The peculiar plight of the Lymphoma survivor

[BerniFriesen]

Hi to all: this is Colin saying hello again to everyone, and wishing good luck to all those (including some of my best buddies on the board) who are still undergoing treatment.

We have been very quiet of late for a number of reasons. First, we have been in transition between residences. Second, we are pretty much totally occupied by looking after our two kids, age 2 and 5. And third, Berni is doing ok in general, and has far less need for feedback from fellow Hodge Podgers. (As mentioned before, she would rather not hear how others are doing lest this disturb her own mental recovery.)

This is not to say that things are ok though. Berni had a bit of a psychological breakdown a couple of weeks ago. Or maybe it would be better to say that the accumulated stress of the last few months finally got to her.

Back in July we spent that whole month packing up our house in Saskatoon ready to leave it for the renters who arrived on August 1st. Then we spent 34 days in our travel trailer (with 2 preschoolers!!!) before moving into our rental house on Hornby Island in British Columbia. Then we had to sort that house and our possessions out, while the kids' day care scenario went berserk compared to what we had planned, and while we were also trying to work out final aspects of the design of the house that we are building.

It was enough to send any sane woman mad, let alone one who had been though 10 months of cancer treatment in the year before!

It was not surprising that Berni had a bit of a stumble. But she was on her way to getting better, with the help of the local GP and a local counselor.

Then, last Saturday morning, as we drove into the local town of Courtenay for our kid's regular swimming lessons (two ferry rides from our beautiful island) Berni felt a swollen lymph node in her neck. It is just about impossible to describe the universal sense of dread and doom that this discovery produced ... the fear of relapse in a cancer survivor is a dreadful emotional concept, 180 degrees the opposite of hope.

We went as soon as we could to a walk-in medical clinic, where the doctor confirmed that it was indeed a swollen lymph gland, and not, say, a swollen salivary gland. He prescribed an antibiotic to fight the infection, assuming that the swelling came from an infection in the first place.

We came back over to the island later in the day, and spent the rest of Saturday and all of Sunday in a totally depressed state. A relapse for Berni would mean that we would have to move off the island to a place where she could get treatment, an enormous upheaval on top of everything else.

But then, on Monday, the swelling began to go down. The sense of relief was amazing. All of a sudden we returned to the ordinary trials and tribulations of those who do not suffer from cancer, pathetically petty nonsense in comparison.

I am left with one horrible thought though, having gone through this cathartic experience.

Surely, it must be a natural thing for the human body to have swollen lymph nodes every now and again? Surely, the way in which these normal lymph nodes do their everyday business is to fight infections, and to become angry and swollen as a result? A normal healthy human being has to have at least one swollen lymph node every couple of months or so.

But to a survivor of Lymphoma, a swollen lymph node every couple of months means a horrifying and traumatic couple of days imagining the worst of all possible worlds. Normal life for a Lymphoma survivor would therefore seem to imply a regular dose of utter terror every 2 to 3 months for the rest of one's life, however long or short that might be.

Do the survivors of other cancers carry this burden? Do they have regular normal bodily functions that simulate a relapse of their cancer? I am hard pressed to think of any examples -- a cough for a former lung cancer patient? -- a bloody stool for a former colon cancer patient?

Maybe the only closest thing would be an enlarged freckle or mole for a skin cancer patient. But each of these examples does not represent a "normal" bodily reaction in the same way that a swollen lymph node is a natural reaction to an infection for an otherwise healthy human.

It seems to me that yes, Hodgkin's Disease may be a "good" cancer to get, in that the survival rate is extremely high --- but that survival may come at a high psychological cost, as every swollen lymph gland that you ever get for the rest of your life may make you think of the possibility of relapse.

Berni's counselor has suggested to her that she scope out a psychological plan for dealing with future swollen lymph nodes.

Does anyone have any advice as to how to create such a plan? At the moment, our reaction is pure panic......

[ag2006]

Colin, I understand what you are all going through. Right now, my cancer is under control so perhaps I can add my two cents worth.

I also live with the fact that Hodgkins can return like many cancer survivors. I still have scar tissue that needs to be radiated and I live with that still looming in the air like many of you. I was told Hodgkins was the "best" cancer to get by everyone who treated or saw me in the medical field, along with friends who had cancer. I was never warned or even told that Hodgkins is a tricky disease to cure for some of us. Further, it just may be a type of disease that is treatable like Diabetes and that some of us may need to learn to live with it. After I completed ABVD treatment, I was elated that I won this battle then in 3 short months, I relaspe, then I went through a SCT this past summer. Now 100 days later, I am told I am technically in remission.

For me in order to get through all this, I draw strength from my faith, God, my twin sister, my family, my friends and all those who supported me the last 16 months. I don't have time to be depressed (unless my doctor ups the Prednisone) because every day I have I feel so lucky to be alive. I choose not to be bitter, angry or fearful because I choose to live and not be a victim, but a warrior. Yes, I have my down days, but mostly good days. Nobody knows how much time they have, so the point is what's the use of living life miserably or in fear? Why be miserable and make my family miserable and stressed or fearful? They see me and if they see me positive, they relax and we enjoy our time together. I can't make my family or friends miserable because having this cancer also hurts them. If I allow the thought of the scar tissue that's left over stop me from living, then I am NOT living and I'm not giving up. For me, it's mind over matter and hard as that is, it works for me and I've come to terms with it.

We are ALL in borrowed time even the healthy people. We are all "temps" in this world and none of know when. Although I've had some temporary setbacks that were difficult, I got through it. I feel good and stronger in spite of cancer and because of cancer. I choose not to live in fear of the "what ifs" or live in fear of cancer. Living in fear does not accomplish anything. I don't want to have this disease again, but if I have to fight it again, my plan is to fight it with everything I have because I have so many reasons to live for and so many plans for the future.

Personally, I am not going to be wallowing in self pity, fear or anger because that's negative energy. I'm not saying that's bad or that anyone else can't do that, but it works for ME to be positive. Again, I have my off days and cry when I need to, but I mostly choose the positive. I am not going to let cancer get the best of me. If I do, then cancer got me and won -- I can't let it beat me. I don't only want to survive this, I want to LIVE and that's my main motivation and my plan that personally works for me.

In addition, groups like this, therapy, supportive family and friends, a top medical team and determination KEEP me going. I wish I could offer you miracle advice, but each one of us fighting cancer has to find it within ourselves the strength to get through all this and to deal with it as it comes. It's up to us. The rest I leave it up to God.

Good luck and God bless,

Anne

[BerniFriesen]

Hi Anne,

I do not think that it is a matter of self pity. If cancer did return, then Berni would fight it with all her might. But that is not the problem that I am trying to identify.

It is the simple, but horrible, fact that lymph nodes swell when one has an infection. But a swollen lymph node to a Lymphoma survivor is ambiguous -- it could mean that the cancer has returned.

How does one deal with that ambiguity? A normal person ignores a swollen lymph node... how does a Lyphoma survivor handle finding a swollen node?

[ag2006]

Hi Colin. Maybe some seasoned surivors can chime in. I have mentioned what works for me above and that's the only way I personally know how to deal with the ambiguity of cancer. Basically, I take it day by day and I know it sounds simplified, but there's no other way for me...I don't want to live in fear of this thought forever. Even with the possibility of swollen lymph nodes or leftover scar tissue, I find it within myself the strength to deal with it as it comes. I hope you'll get a better response by someone who has been dealing with this longer than I have. It was just my two cents worth. I am rooting for all of you.

Best regards,

Anne

How does one deal with that ambiguity? A normal person ignores a swollen lymph node... how does a Lyphoma survivor handle finding a swollen node?

[AMD45]

Colin, I'm so glad to have you pop in again. I've missed you -- you were like my own private cheering section and I appreciate it soooooo much. I'm sorry to hear that Berni is having a tough go of it. Unfortunately, I think what cancer does to your head is so much worse than anything it does to your body. I know she says she doesn't want to hear from other survivors but she might be surprised at how much her feelings mimic another HD survivor's. It took me a while and talking to a lot of other folks with HD to realize that my story isn't really that unique and that my fears and worries aren't really any different from other folks who've gone through what I've gone though. When I finally came to terms with that, it was kind of refreshing. Because I could let go of some of the blame. And letting it go begins there.

[Michael]

Colin, your stereotyping us HD survivors!
You said:
"But to a survivor of Lymphoma, a swollen lymph node every couple of months means a horrifying and traumatic couple of days imagining the worst of all possible worlds. Normal life for a Lymphoma survivor would therefore seem to imply a regular dose of utter terror every 2 to 3 months for the rest of one's life, however long or short that might be."
and:
"as every swollen lymph gland that you ever get for the rest of your life may make you think of the possibility of relapse."



These statements may apply to your wife. Not all HD survivors are like this, at all.


Faith in the Lord can help her. His strength is unimaginable! I hope she knows she is not alone.

Also, here's a plan:

Don't feel for lymph nodes. Period. It's that easy.

[BioProf]

Colin,
Good to hear from you. Glad Berni's in remission and that your lives are moving forward, albeit with some fits and starts.
In seven years I've noticed only one swollen node. I ended up getting it biopsied after 3 months of waiting. Turned out to be tonsilitis at age 38 so i got those removed at the same time. By now I actually don't worry much about a relapse, I'm more concerned about a secondary leukemia. Don't know if that's statistically correct or not, but that's what bothers me every now and then.
I essentially try not to "waste" energy worrying while I'm healthy though, since worrying about it won't help. I find doing things that remind me I'm alive to be helpful. Cycling 40 or 50 miles (100 if I can get there) works for me. Lurking and posting here helps me, as does being active in local and national cancer awareness and research efforts. I may even develop a class on biology of cancer for non-science majors at some point. None of these things will do anything to keep me physically healthy (OK, the cycling does, but won't prevent my getting cancer) but they're my psychological therapy.
Next time I notice a swollen node (and I don't poke around for them, but the last one was pretty darn obvious while shaving) I'm sure I'll worry. I'll post here and get into an oncs office pronto. And I'll try to listen when everyone tells me the 100 other things it could be.
Steve
PS Antibiotics don't work on viral infections, so persistent swelling while taking antibiotics doesn't mean a relapse either.

[bbyblueiii]

Colin -

I wish I had the perfect answer for you. I am a victim of constantly touching my neck to feel for any kind of swollen anything. Anne's advice about being positive is really good and I certainly agree with her because it does help to an extent - only, thinking positive doesnt work all the time for if it did then therapy wouldnt be necessary and this would be a much happier world we live in. Its a brilliant question that you ask and I wish I could get a concrete answer from someone because unfortunately thinking positivly and faith in whatever higher power you may choose to believe in is just not enough for many of us. No matter what we do and what we believe that fear will only lessen with time and you are right - it will be brought around again when a lymph node decides to come out and talk to us. The fear may be greater or lesser in certain ones of us but it is there and it does cause doubts.

Whatever conclusions, if at all, you and Bernie come to, know that she is not alone now nor will she ever be in the fear she feels deep inside. Whether she wants to know it or not, we are with her and we feel her pain.

All the best to you and Bernie and your two babes...

Tianna

[AnneJohn]

Hi Colin:

Good to hear from you again - and to know all is going well for Berni in spite of recent traumas.

I have no wisdom to offer. John is going through his own form of post-treatment trauma at the moment - and it is almost as difficult to cope with as the treatment itself. While he was going through treatment, things followed a more-or-less predictable path, and I found that I could cope especially with the guidance and support I was getting here.

But this is different. We too have been going through life changes - some influenced by John's cancer. Both our children are now awy at school - and that is weird indeed. I have taken on a totally new and very time consuming job which involved our moving onto the campus of the boarding school where I teach. John still has his furniture making shop at our house - now he commutes to work instead of me. One of the things that made me take this job was the clear knowledge that life is short and experiences should not be postponed. John is actually enjoying the experience of living on-campus among 500 young people.

But his business has not picked up since he became ill. He is not getting enough work to cover his expenses - a new experience for him. He did not work nearly as much while in treatment, but now he feels well enough, the work is not there. He knows it could be just a matter of time, but he is depressed (I am not using the word lightly) about it.

In his case, he is totally convinced that all of his inner strength was used up during the fight against cancer and the set-backs he experienced at the beginning. He feels he was remarkably luckey to beat the odds as he has done, and he believes deeply that if he relapses he will not have the strength necessary to fight. He trys to fight this belief, but it is deep and real. I do not know why he feels this way - except that he is currently so drained by the year of treatment. He is not showing any signs of getting over this. Consequently he is terrified beyond reason of relapse - because he believes he will not be able to fight it. He had a Cat scan last week, his appointment is next thursday, he is almost paralysed by fear. He will not admit to the possibility that he is depressed, that he could use some help. Frankly, I am finding this more stressful than when he was in treatment - when at least I knew what had to be done. My attitude (and it is easy for me to say this )- is that he is cured, he is not going to relapse - but if he does, well, we will deal, just as we always have!

But he believes he won't be able to deal. And that could be a self-fulfilling prophecy.

The one thing we hear over and over is that everyone reacts differently. Some feel swollen nodes, some never touch their nodes again, some find strength in faith, some find strength in love and partnership, some have to find their own way. Perhaps getting through the "year after" is just another part of the whole messy thing - one way or another!

[izzydoesit]

Colin,

Welcome back! Sorry to hear about your plight, but it's clear you understand the fear that's very common to most of us no matter how positive our attitude, how strong our spiritual life, how much fortitude and courage we possess, or how sturdy our support system. I think all of these qualities are necessary survival tools, but since we're all hard-wired differently, each of us will react differently to the circumstances that will no doubt continue to present themselves for the remainder of our lives.

The hard, cold, undeniable truth of cancer is that it destroys the illusion of immortality and our belief that nothing bad will happen to us. The question then remains: how do we cope with this fear when it arises so that it doesn't destroy our courage, joy, serenity, and hope for a healthy future?

I don't have an answer, but I do think all the suggestions posited have great merit--physical exercise, doing service, a strong spiritual life, and a deep connection to others. Even then, it's human nature to doubt and to worry.

I'm meeting with my onc's nurse practioner tonight after the monthly lymphoma support group to talk about how we can implement a survivorship program at the hospital. Maybe if enough of us band together we can bring the needed attention and resources to this very real dilemma.

Again, anyone with issues they would like to see addressed, please post here or email me at dictionarygirl@hotmail.com

Best to you and Bernie.

Kim