Living with my husband's diagnosis of Diffuse, Non-Hodgkins Large B-Cell Lymphoma has brought clarity to the expression "make every moment count". It has also challenged us in ways we never could have imagined we would ever be challenged.
I love pictures. The paper ones, mostly . . . the kind that end up in photo albums or in frames that you place in strategic places around the house, on walls or on coffee tables, so they catch your eye as you glance over at them while on your way to the kitchen or to relax in a quiet room. The electronic ones, stored on a computer or on a phone, are nice but give me the printed versions, any day, so I can stand at eye level, in front of them, or page through them, as if to play a movie of my life right in front of me that I can pause and play for as long as I want. We have books and books of them, all of them in chronological order like chapters in a novel, captured moments of time that I can hold in my hands if I want to.
When a person is young, you seem to think of life as something you have control over . . . scheduling it, in segments, those things you want to do “someday” or when you get older. You think you’ll have time to do this or that; but, when you get older and live through life . . . loving, losing, laughing and crying . . . you realize how short it really is and just how little you have control over.
After my husband’s cancer diagnosis, realizing just how life would look without him, facing that beast everyone fears the most, staring at it right in the face . . . I realized that life would never be the same. What was once a “normal” life, became so fragile and uncertain. We had faced serious illness for years, but this was different. It now felt like the lives we had built, planning for retirement, and into the future, were all built on sand . . . all could be washed away with the incoming tide.
“Normal”, I have learned is nothing more than a state of mind. I now believe it was absolutely “Abnormal” to think cancer, serious illness . . . loss . . . wouldn’t happen or change my “normal” life. I now realize it is completely “ABnormal” not to have a sense of just how temporary life is or to live it without the realization that it can be changed forever, in the span of just a few minutes.
Having our lives thrown into a blender and thrown back at us, in pieces, when we heard those dreaded words, “It’s cancer”, in that sterile hospital room, was a moment I won’t ever be able to forget. There is no printed picture to remind me of that moment like all the others hanging on our walls at home or in one of those photo albums of ours that I can walk past or tuck away somewhere. I carry it with me in that part of my brain I will never be able to forget or put away somewhere. It’s there, always there, reminding me of how fragile our future is and the threat to it that is still there, ever present.
We continue to enjoy Terry’s complete remission and will forever be grateful he has achieved it; but it does not end the fear of its return or any one of the very real, serious side effects it may have left behind that we have yet to witness. Chemotherapy ends eventually; but what it leaves in its wake is a plethora of emotional and physical consequences impossible to fully articulate.
I do not “accept” any of it; nor have I been able to “accept” any part of the years of other serious illnesses I have watched my husband suffer. I must “acknowledge” them. Yes, they happened but I reject each and every single one of them with everything I have left that hasn’t been destroyed by medical negligence and incompetency.
Brief synopsis of his serious past illnesses:
Multiple cases of Pneumonia/pseudo pneumonia, congestive heart failure
Pulmonary emboli (2 instances of those)
Near stroke while in the hospital due to over anti-coagulation
Rectus sheath hematoma which caused organ failure, also caused by over anti-coagulation
Diffuse Non-Hodgkin’s Large B-Cell Lymphoma, Stage IV
Things I have had to do/learn how to do:
Question EVERYTHING we’ve been told by the medical profession
Become assertive when I’ve choked back tears
Drive my car with hazard lights all aglow while honking the horn in busy traffic and at night
Fill out leave forms for both of our employers and beg for their patience in intimidating “meetings”
Do research, late at night, after working all day
Shovel a foot of snow with a snow shovel multiple times in a day
Find the e-mail addresses of co-authors of medical research papers from all over the world and ask them for help, one of whom practiced in South America who told me not to give up
Triple layer bedding (bottom sheet, top sheet, blanket) that can easily be removed and replaced, layer by layer, in the middle of the night, due to drenching night sweats which went on for months
Administer stomach injections
Pack a surgical wound due to infections
Find the courage to tell hospital staff they need to halt triple doses of heparin to avoid causing a stroke
Lower my pride and ask for help when I need it (still working on that one)
Find internet resources for everything from treating mouth sores to minimizing nausea
Search for creative ways to cook things that actually caused my husband to gain weight instead of losing it while undergoing chemotherapy, without a nutritionist’s counsel
Remain watchful and alert at the chemo clinic and not be afraid to question the doses and types of chemo drugs being given
Try to keep the panic in me at a minimum when urgent situations arise like remembering I have GPS and “Google Maps” on my phone when the route to the emergency room is blocked by a traffic accident in the middle of the night (Don’t laugh. I speak from experience . . . and it was not a good one, let me tell you).
Create a spreadsheet for medications being taken at home to stay on schedule with them
Found out how to keep track of lab results at home using charts and line graphs, to monitor progress being made
How to share my thoughts and feelings with my husband who seemed to want to suppress his because he thought it would make him appear weak
How to channel anger into action
Finding things that ease my worried mind: Shopping, bubble baths, a glass of wine (or two), chocolate, watching a movie or having lunch with a friend
Pouring my heart and soul into posts like this one, finding a sense of calm in sharing how I feel with others (some of whom may find the information of help in their own situation) and not feeling ashamed in how long or involved they may seem to anyone reading them
Learning to find ways to ease the stress in circumstances I may find myself in, for instance, like throwing things in a suitcase in the middle of the night to get to the hospital for yet another overnight stay. I now keep a suitcase packed and ready should we need it with everything from clothing to make-up and deodorant, plus a little cash and drinking water rather than having to hunt for things at the hospital. A comfy pillow for my Terry and a box of soft tissues are also on that “grab and go” list.
And, here’s the one that I think is key to surviving all of this: Hope without counting on any one outcome. Keep yourself grounded somewhere between elation and despair. Be realistic about the situation. Obsessing about staying “positive”, for me, only limits the ability to question things and keeps a person from viewing situations realistically. Searching for truth and finding ways to navigate a very (sometimes) less than acceptable system is the most “positive” thing a person can do for themselves or for someone you love.
I speak from experience in all these things . . . but, I am still humble enough to admit I don’t have all the answers. It has been a long 13+ years of watching my dear husband suffer unspeakable pain and degradation at times that I can only imagine. But, in many cases, the role of carer is forgotten and easily dismissed as “non-essential”. We see and witness things the “patient” never will. I have watched my husband turn fifty different shades of gray and yellow; seen his abdomen grow blacker and blacker from all the stomach injections I’ve had to learn how to give him for his blood-thinning medications and his Hep C treatment. (It looked as though someone had run over him with a truck). We carers watch the people we love, time and time again, whisked away on hospital gurneys, not knowing in what condition they will return to us, if at all. These are all things we witness, we watch . . . the images of which are forever burned into our brains.
If I sound “angry” or “negative” or “bitter”, it’s because we, at least over here, are forced to work within a broken health care system that, many times, nearly costs us our lives or the lives of those we love.
Even with this latest illness, his lymphoma, they let my husband go with a diagnosis of merely a fungal rash on his back (in spite of his other symptoms) and prescribed nothing more than a special soap . . . for a year . . . . . which turned out to be Stage IV lymphoma.
At one point, the general practitioner we went to with his first PE, told us he had a muscle pull and told him to eat a banana every day to raise his potassium levels.
So . . . . yes, I am angry and bitter . . . but, in no way, am I “negative”. If I had been the smiling face, the “positive” one everyone wanted me to be for THEIR sakes . . . I would be a widow today.
We tried to sue those responsible for this incompetency but were told, even though we would win . . . no question . . . the cost of the suit would mean we would lose our home because there wouldn’t be enough in damages to pay for the cost of filing it. Local laws, here, were changed in recent times, limiting our ability to hold those accountable . . . accountable. And, over here, the medical profession operates in a cloak of secrecy when it comes to disciplining a doctor for their “mistakes”.
So, here we are . . . . trying to chart our own course through a future that is uncertain. But, don’t we all face that uncertainty in one way or another? What IS certain is that my husband and I have learned to value every minute of every day more than we ever used to. We have been blessed with what appears to be a complete remission for him; yet it leaves us with years of watchful waiting and the challenges we have seen already in trying to find that level of reassurance we will need to ease the worry. What IS certain, too, is that I will never “accept” burdens as lessons we are meant to “learn” because of past transgressions. They strike randomly and are unfair. I “acknowledge” them and realize that in order to survive and move on with them until they are lifted, I must search for ways to ease the pain they cause by remaining focused on finding solutions to them, rather than numbing my brain with platitudes and acceptance.
I have come to learn the true definition of the saying, “God helps those who help themselves.”
If you managed to make through all of this and have reached the “end”, I thank you. But, it isn’t the “end” you know. If you’ve found inspiration or information that can help you in your particular situation, then isn’t it just the “beginning”? I know this isn’t the “end” to our story . . . There’s more we have yet to live and learn. Once we stop doing that, it IS the end.
I intend on writing more on this site, instead of waiting as long as I did this last time. There will be much more about our journey I may find I need to share. I hope my posts have helped/will help anyone reading them and I invite anyone wishing to correspond with me to do just that. Sharing and talking about things, openly and honestly, is the best therapy there is, I have found. And this site has been of so much comfort and support. I am so grateful for the opportunities it offers those of us, both patients and “carers”.
I hope this finds you all well and that you have found some degree of inspiration in my words. My life, my experiences, are an open book to anyone who may find them helpful.
Til next time,
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