Tinu’s Fudge Cancer Story
Tinu was diagnosed with Chronic Lymphocytic Leukemia in January of 2016. We asked her how she felt when she received her diagnosis, and she told us that even though she knew something was wrong, she was still shocked when she was told about her lymphoma.
“I’d been feeling extra fatigue and getting night sweats since January 2015. I already have two chronic illnesses, and the pain from those causes fatigue but it had never been like this. I’m in my 40s so I thought the night sweats might be early onset menopause. Then there was a sharp decline in my health in May of that year. I knew something was wrong, felt it in my bones. I started seeing the doctor in the fall, but I was not diagnosed until January 21, 2016. First I dragged my feet, scared to find out. Then the holidays came – the hectic pace really revealed that something was wrong.
By the time the doctor told me, despite having researched my symptoms and experiences for three months in Google and possible treatments in Google Scholar, the wind was knocked out of me. Shock was the main feeling.
The only moment that day that I was near tears was when I walked into my house where my mother was waiting. She was supposed to come with me but a last minute child care issue came up with my sister’s kids. She came to the door smiling and hopeful. And I felt so bad, almost guilty, that I had to tell her that her oldest child had cancer.”
Her hardships are difficult to summarize, because she says that there are so many different types. During her battle, there are large financial burdens that affect almost every part of her life. But there is also pain from the cancer. It’s both emotionally and physically draining. So what does she say are the hardships?
A close second was watching my retired mother go back to work to try and make up for my income.
The only reason this didn’t come in as the hardest thing is that she didn’t really take to sitting around all day. She’d already been working a bit to pay for the extras. But now she’s exhausted all the time and my sister has no real help with the kids. There’s not much I am able to do.
Then there was the day I had to telling my sister’s two sets of twins who live with me that I have cancer, what it is, and what it means. We’re very close. It’s only one of two times I actually sobbed since this started and I still tear up thinking about it.
What I struggle with the most on an ongoing basis is the pain. I already had back pain and nerve pain from two chronic conditions. Adding bone pain on top of that was not great, to put it lightly. And the pain I already had was intensified. But the doctors have been great about trying to make me comfortable. I try to be sparing with the medication. It really only takes the edge off and it’s not worth the side effects.
Due to past experiences I’m very wary of pain medicine, particularly narcotics. If I take them during the day I can’t think so I can’t work. A lot of what I do has to do with writing or making decisions based on complicated data.
So there are times I try to deal with it instead of medicating. I’m not always smart about it. On top of that doctors are being more strict about dispensing pain medicine and pharmacies are creating complications as well. It’s horrible to need medicine and not be able to get it right away. Luckily I’m not at the point where I need the medication to live because medical marijuana is legal in my state and much more effective.”
Despite all the hardships, Tinu feels that she has received so much support from her community and family.
“I’m quite spiritual and believe very deeply that this hardship was sent to me to bless others or receive a blessing. Thus far it is ringing true – I turned my personal blog into a mission to end the silence around chronic illnesses, hidden disabilities and cancer. There’s so much we’re not talking about, things that aren’t being said.
And some people don’t know how to treat you or what to say so it sometimes feels like the world is shutting you out until after you’re well – IF you get well.
A lot of cancer patients have to deal with side effects for the rest of their lives. Some of us never get all the way well, or deal with emotional or mental health issues, often permanently.
Then of course there’s the love of family and friends.
So many people have been there for me is such unexpected ways. I had a close call with severe bacterial pneumonia a few years ago, and I felt very loved and supported then. But now, it’s so much different and deeper.
People give to me before I ask, help before I need it, love without ceasing, and on top of that, repeatedly.
It’s overwhelming sometimes. My family has stepped up their game in ways I never thought to wonder if they were capable of- both immediate and extended family.
If she could offer advice, she would tell others to “find the humor in any moment you can.”
Research has shown that humor can help positively affect mental health, but also physical health.
“There may be no other time in your life that you get a pass to make inappropriate jokes, laugh at life, laugh at your own circumstances, binge watch comedy shows, play your favorite music, act a fool or (when you’re not wary of infection) hug people constantly on a whim.
But when I found out, that even with remission, my life span is probably shortened, after I mourned I thought about how I’d want to spend the next 6 or 10 or 20 years. And I’d rather laugh than cry. Barring clinical depression, that’s what I’m doing.
When you’re feeling down, you have the power to change your mood sometimes. As well as the power to yell if you can’t. So be alive while you’re living, in whatever form that takes.”
Tinu also provided us with a story that she believes can help brighten someone’s day, especially for those that will be experiencing a biopsy soon.
“I have a great story about the funny horror of an abdominal biopsy I had to have. It’s too long for here but it’s called Biopsy Hilarity. It has some NSFW language but I’m told it’s comforting to people that their experience having a biopsy can’t possibly be worse than that.”
When asked about the best or nicest things that have been done for her during her difficult times, Tinu had a hard time pointing out a specific instance. Rather she looked at all the wonderful things people have done for her since this arduous journey started.
“So many people have done so many nice things. My father flew 10,000 miles a month earlier than he planned so he could drive me back and forth to every chemotherapy and/or immunotherapy treatment. My retired mother went back to work when I couldn’t be the primary wage earner.
My other sister has told me repeatedly that she’s willing to drop anything to help me and told me that I could come to her any time for anything. My older brother and his wife visit from three hours away and have come to treatments with me. My younger brother comes to visit and brings his girlfriend, who I adore.
And that’s just my family.
So I’m going to go with unexpected. And that would be the friends who came together to have this fundraiser for me, which I wasn’t sure I would need, but that I really badly do now. Before this happened, each one of them has sent me money or come to visit without me asking for anything. They predicted my need, on several occasions.
And then all the people who shared my campaign or donated or left me kind thoughts at moments when I needed it the most. I have no idea how I’m going to thank them. But I’m going to try.”
To learn more and stay updated on Tinu’s Fudge Cancer Story, you can visit her GiveForward community fundraising page here.