Surviving an Incurable Blood Cancer

By christian1983

2 min read

Being a lymphoma survivor means that you have lived through something very challenging. There is no doubt that cancer is one of the most challenging diseases. The treatments for this disease are very intense physically, mentally, and emotionally.

Incurable lymphoma

Sometimes, I hate that I got cancer. I hated having to suffer through it and putting my family's lives and emotions also through this ordeal. I hated chemotherapy and how it took even more of my health and quality of life away from me. And to this day, I still suffer because of it. I always feel tired and I'm afraid of doctor appointments because of what they may find since I have an incurable type of lymphoma.

It’s been nine long years, and I’m still not done with this. It is the anxiety of waiting for results of pet scans, blood tests, and lying awake many nights feeling for lymph nodes. But sadly, I relapsed for the third time and restarted chemotherapy again in April 2019. Unfortunately after 6 months of chemo, the tumor was still intact. Thereafter, I got 22 radiotherapy treatments which finally put me in my 3rd remission. Before moving to Florida, my Pittsburgh Pennsylvania oncologist told me that my cancer will come back.

Light at the end of the tunnel

Being a cancer survivor/warrior has been both educational and horrific! I do feel blessed by all the love and support and the quality of medical care that I have received in the past 9 years. Cancer changes people. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately.

Fighting cancer is a battle that is not won just by medicines, chemotherapy, and a great team of doctors. Becoming a cancer survivor/warrior also requires a constant stream of strong willpower, faith, hope, love, and most importantly a positive attitude.

You chose to beat all the odds. You chose to believe that hope is stronger than reality. You chose to overlook the suffering. You chose to see the light at the end of life’s darkest tunnel.

Quality living

I cannot deny that sometimes, I am afraid of living too deeply, of making an effort to regain what I lost when I was initially diagnosed with lymphoma, only to have it all threatened again by the recurrence of the disease. I’m choosing to take control of how I live. The long-term side effects of treatment on your physical and emotional health can be exhausting for both you and your loved ones. I just want quality living, even if it’s for only a couple of years.

I'm fighting for my life, in a different way. I'm fighting to have a quality life!!! So, it’s important for me to celebrate milestones along the way and I’ve learned to accept the term survivor. I’ve overcome a great deal and I’m still here nine years after my initial diagnosis and 2 relapses. For me, every day is a gift to survive 1 day at a time and I thank God for every second of life that he has permitted me to enjoy to the fullest!
3rd Remission FNHL

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Amanda Brunson Moderator & Contributor
Amen 🙌🏾Your story is absolutely beautiful & not just by only reading your story. Your words speak to me and I see you💚a lot of things you said spoke to me and at the stages when I was in active treatment myself. Quality of life is very important and your right the treatments are hard as well and have long term effects. But through all of these trials and tribulations, you choose Joy and hope for each day the Lord blesses you✨I feel the same way💞how beautiful in The whole grand of things💜thank you for allowing me to hear you🫂Amanda🐼(Blood-cancer.com team member 🧡)
Dennis Golden Moderator
christian1983... A really great article that captures a lot of the "not so much fun stuff" we encounter on our travels with blood-cancer. Unless you have been there it is impossible to fully understand the profound transformations that occur in the mind, body and souls of cancer survivors. Thank you fellow traveler for reminding each of us to cherish every day ... Dennis(Blood-Cancer.com TEAM)
Ann Harper Moderator & Contributor
<inline-mention username="christian1983" user-id="3650204"/> You are truly a warrior. I believe mindset plays an important role in our disease. Try not to believe what your doctor said and just live your best life. I love your picture! Ann (Blood-Cancer.com Team Member)
Carolyn B Member
I also have one of the incurable non-hodgkin's lymphomas... Much of what you say I agree with. The journey has some serious ups and downs, makes you think about things you never really had to think about before, cope with a level of problems in our life that we have usually had limited or no experience with in the past (fnhl is my third major cancer and I found it qualitatively different to deal with a "no cure" cancer than a "potentially curable" cancer). Not to mention it sucks to have an incurable cancer that upends our life. There are many ways people deal with it and what works for one may not work for another. I would like to point out though that you can not, "choose to beat it". You can be optimistic (realistic or not) that treatment will work, you can choose life over suicide... but you can not "choose" to make treatment work. That is out of our hands. The treatments work for many people and not for some. Science is still trying to figure out why and develop new treatments that may help those who don't respond as well as hoped or at all. While telling yourself you have chosen to beat it may work for you and your mental health it may also make someone else feel awful that they somehow didn't "choose strongly enough" and are not responding as well or at all, where the odds are in their favor of dying. Would you feel the same if you hadn't been as "lucky" to finally respond to radiation and instead found nothing had changed except to add to your list of problems all the subsequent fall out from radiation? This goes along with the often repeated statement belief that that you need to stay positive, upbeat, optimistic... There are periods where it is appropriate to grieve, be sad, be angry, etc. It is all part of the process of adjusting to having a bomb go off in your life. And those who can't maintain that cheerful, upbeat, optimism then can feel guilty and that they are somehow at fault (because they are not being positive enough) if they don't respond to treatment, if they feel like their life is falling apart and if they can't, at that point in time, feel positive. I am with fnhl, 11 years after diagnosis, and am in a very different place than I was when I was first diagnosed and during the first several years, the first post chemo biopsy... It is mostly easier now to live with cancer in my life rather than struggle to adjust to that. Certainly optimism that a treatment will work, etc. is useful, but there is a place in life to grieve what we have lost, think about what if this doesn't work and how will I cope with that, struggle with learning how to deal with this kind of uncertainty, the ways our lives have been upended - some of which may never go back to how things use to be and may result in a more negative situation... I think we need to be careful to also recognize that what "works" for us in how we cope isn't going to necessarily work for all. What is true for all is that something really bad happened in our lives. It can be a struggle to figure out how to cope with that and to then figure out how to keep going and adapt to what our life is like now. Often that route is not the same for everyone and some expectations are more damaging than others if we aren't in the "good outcome" group. Again I am not trying to criticize what works for you. Coping like you do doesn't work for me however I know, from reading people's posts it works for many. I am pointing out the other side for people still searching for answers who have not yet found a way to figure out how to keep having cancer from tearing them apart if they find your approach doesn't work for them. There is nothing "wrong" with them and their outcome isn't going to be "worse" because it doesn't. I don't have answers. I think the journey is rather like grief when someone we love dies in that initially the periods of grief are close together/or non-stop and intense with little let up. Then slowly, over time, they become further and further apart, shorter and shorter although during those periods they can be as intense. And you can be triggered unexpectedly (or by bad cancer news, etc.) to cycle back through earlier periods in time. And you may have no real idea how you got from point A to point B several years later...
1. Doreen Member
 <inline-mention username="Carolyn B" user-id="3639643"/> What a tough experience. Some people just don't get it and never will. I do hope your support system strengthened as this journey continued. How are things going today? ~Doreen (Team Member)
2. Katelynn Bauer Moderator & Contributor
 <inline-mention username="Carolyn B" user-id="3639643"/> Ugh that's so annoying. (Annoying is the nice way to put it) I'm sorry that happened to you. I had a friend tell me something similar when I had a panic attack. "It's gone now you don't have to worry anymore" OH OK I know it's hard to understand as a healthy person, but it doesn't mean it isn't hurtful or insensitive. I hope you don't have to listen to anymore insensitive comments in the future. Warm wishes, Katelynn (Team Member)