Lately I have been finding myself in the unique position of being asked for advice by people who have been recently diagnosed with or living with cancer as well as people who have a loved one diagnosed with cancer. I have had the experience of being both the caregiver to someone with cancer in 1990 as a person in my 20’s and also needed care when I was diagnosed with my own cancer in 2015. I was also a widow the week after I turned 30.
Sometimes the irony of life is too much. In March of 2015 I was diagnosed with a very advanced form of non-Hodgkin’s lymphoma – and a type that is one of the worst in terms of prognosis (Mantle Cell). Both of my parents died young of smoking related illnesses and here I was – even younger – facing what seemed like certain death. I had quit smoking 25 years earlier myself and never looked back. I always knew that was one of my smartest decisions (and one of my dumbest decisions was to start smoking as a teenager) and thought that would guarantee me a healthy future. As I got older I realized that while quitting smoking was one of the best things I could do for my health, there are many other factors that play into health and longevity. And many of those things were not in my favor in the first part of my life.
I had already been in the hospital for days when I received the news of my diagnosis one evening. I had been sent there straight from my doctor’s office when my blood test results came back with my White Blood Count of 240,000. On paper I presented like leukemia. After all the testing came back it was Mantle Cell Lymphoma. I would have been better off with leukemia. When does someone ever say those words?
I was basically helpless, laying there in the hospital bed, weakened from my disease and then continuing with the chemotherapy treatments. At some points I had almost no immune system – it was wiped out. I was anemic. I had few red blood cells to carry oxygen to parts of my body. There were times where I could barely lift my head up off of my pillow. At this point you have to let go and let others care for you, however they can.
I remember being the main caregiver for my late husband. I handled pretty much everything for him. Coordinated his treatments, doctor visits, cared for him when he was feeling poorly, coordinated his rehabilitation from losing his sight, visiting him when he was at a facility and bringing him what he needed, and keeping him safe. Not to mention working full time to keep my job for income and insurance benefits. Plus – taking care of our cats. And yet as stressful as it was for me as a person in my 20’s – how much more stressful was it for him becoming blind and having a serious brain tumor?
So fast forward to 2015 and I had to let my now husband Jim take care of everything. My job was to focus on getting well. Now he had to juggle the house, the cats, his job, visiting me and caring for me as best as he could. Jim was really thrown out of his comfort zone with my illness – he had never had to deal with anything like this in his life and he was a bit lost. The poor guy had to give me daily injections for 10 days after each chemo treatment of a type of white blood cell called Neutrophils. Even with our cats – he would have difficulty giving the meds so I would do it while he would hold them. Little did he know he would have to be my nurse.
Jim’s desire to help more than made up for his lack of experience in being a caregiver. He really wanted to help in the best ways that he could. Instead of assuming he knew what I needed – I had to tell him or show him and not get impatient when he didn’t quite understand what to do. It has to be shocking and a bit terrifying when someone you love and care for is so desperately ill and you don’t know if they will ever recover. He had become my nurse, my parent, my administrative assistant in addition to being my husband. He willingly stepped up to the plate. I can’t tell you how many stories I’ve heard where healthy spouses have left the one who is sick (and not for insurance purposes), because they couldn’t handle the pressure of the situation. I can’t imagine how I would’ve made it if not for Jim?
Having a caregiver who is willing to do whatever it takes to help you and take care of everything else while you are being treated for and healing from serious illness is PRICELESS. In my case – this afforded me the “luxury” to be totally focused on getting well and not having to worry that other things were taken care of.
To help in my healing process – Jim as well as other friends would bring me homemade soups and other healthy things to eat while I was in the hospital. It was important to give my body foods that were as nutrient dense as possible – when I could eat. I would definitely not call the hospital food “nutrient dense”.
I really didn’t know how strong I was until I was challenged in this ultimate way. I was the person who was terrified of getting blood drawn for a routine physical. Another irony that I would get a “blood” cancer where my blood would have to be drawn multiple times/day while in the hospital and while an outpatient, and receive over 40 transfusions of blood and platelets during my treatment. Let me stop right here and now and thank every person who donated my blood products, and everyone else who donates blood. You have given me and countless others the most precious of gifts – the literal gift of life. I would not have lived if not for those transfusions. I wish I could meet each and every person who donated to thank them personally but I will never know their identities. That is the true meaning of “selfless” – putting yourself out by doing something good for someone else while not receiving any recognition for doing so.
As the “patient” – here are some things to think about if you are ever on the side of needing care for a serious illness:
– Have someone accompany you to doctor visits/speak to the hospital staff on your behalf. They will be your advocate. They can take notes, ask questions and make sure all of your concerns are addressed. You are already overwhelmed with being/feeling sick and having someone else advocate for you will take a lot of pressure off of you and make sure things don’t slip through the cracks.
– If you are uncomfortable with something proposed for you – a treatment, test, medication – anything – get a second and even third opinion. At the end of the day YOU are the client and you have to feel confident in that the services you are getting are right for you. Sometimes it’s as simple as one doctor’s bedside manner over another. To many people, including myself – that makes a BIG difference and is a game changer. You are not in legal custody and you have free will to make the decisions that feel right for you. I, personally, refused some of the prophylactic meds they wanted me on during the months I was in treatment, just in case. I weighed risk vs. benefit of taking these meds and for me I was willing to take the risk. My body was already overloaded with toxic chemicals – didn’t want to add anything that wasn’t absolutely essential.
– Work with someone educated in nutrition to ensure that you are receiving the most nutrient-dense foods during your treatment. Supplements can also help give extra protection where needed. I took quite a few during my treatment to mitigate the damage from the chemotherapy I was receiving. It’s important to be aware of food/supplement interactions with medications you are taking. We gave the doctor a list of what I was going to take while being treated and she said she was fine with it as long as I didn’t take them while I was in the hospital because if something went “wrong” – they couldn’t control for it. Fair enough. I made a deal to only take them when home. I was open and honest about what I was doing. And I got unexpectedly (on the doctor’s part) great results.
– Stay in your lane and do not compare your progress with anyone else’s. You are a “bio-individual” – meaning your body’s chemistry is different and unique from everyone else’s and what works/doesn’t work in someone else can work well in you, or not. I remember being in the infusion room at the cancer center and on more than one occasion the people next to me wanted to talk and it always got around to horror stories about themselves/sister/3rdcousin twice removed about what went wrong, what didn’t work, what problems they had during and because of treatment and I just couldn’t listen to it. They were not me, they are not you and my goal was to focus on my own illness, medical test results and progress, as yours should be.
– Look at your situation as temporary and remember – every hour is one hour closer to when you are finished with treatment or out of the hospital. When I was inpatient in the hospital for chemo treatments – I would stare at the clock and wish the time away. Each hour was an hour closer to getting out of there. And there was no better feeling then getting out of the hospital.
– Let your caregiver(s) help you and you worry about healing. That’s isn’t always possible but if you are lucky enough to have a good caregiver(s) take total advantage of their help.
Probably the most important thing I can tell you is that even if the statistics are not in your favor and for example – only 10% make it and recover from what you are battling (like in the type of cancer I had) – someone is in that 10%. Why not make it YOU? It’s the literal fight of your life and it may be extremely difficult but someone makes it. IT CAN BE YOU!