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Meet Dinooo...

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Please meet our May neighbour Dinoo and learn about his experience with Stage 4 Non-Hodgkin Lymphoma

It has been about a year since my diagnosis. I was diagnosed with stage 4 Non-Hodgkin’s Lymphoma. There are over 80 different types of NHL and mine is called lymphoplasmacytic lymphoma. It seems to be a rare form - I have only found 2 other people with this form of it.  It is similar to some other types of NHL’s  (eg: Waldenstrom Macroglobulinemia) and I followed a similar treatment regime. One other thing I should mention is that a stage 4 lymphoma only indicates that it is in multiple systems and/or regions in the body. In my case, it is significantly in my bone marrow and I also had/have enlarged lymph nodes in my lymphatic system, mostly in my abdominal region.
I’m a 50-yr-old married male (I’ll be 51 in a week!) No kids, 2 dogs, and a cat (these are our kids).
In Feb 2020 I got some standard tests done. One of the blood tests showed I was very anemic. I had had some weird minor symptoms for a while (fatigue, stomach pain, colds, flus, bronchitis, twitching calves and toes, some weight loss) but wasn’t feeling terrible, and taken individually each symptom could be explained away. I was on holidays when my doctor called me with the results. We made it home a day after the quarantine rule went into effect-we had to self-isolate for 2 weeks at home before I could get any follow-up tests. 
Over the next month I had a scope, CT scan, bone biopsy, and finally surgery to remove my right femoral lymph node for a biopsy. The CT scan showed the enlarged lymph nodes as cancerous, and the bone biopsy found no aspiration, which they figured might be from my disease.  (Turned out 95% of my marrow had been replaced by cancer cells). The lymph node biopsy/removal was finally what led to a diagnosis of the type of cancer I had.
A month passed between the CT scan and I first met with my oncologist. This was probably the worst time of my life as I knew I had cancer, but I didn’t yet know if it was terminal or treatable, or what the next steps would be; that waiting and wondering were the worst parts of the journey to-date.
The Cancer Centre is amazing, and I can’t say enough good things about it and its people. However, during this time, I sure could have used some professional counselling. My family doctor was wonderful, and we had some long phone talks, but he is limited in his cancer knowledge. But his life advice and his personable approach helped me through some rough patches.  In the meantime, I had lots of heart-to-heart conversations with my wife and loved ones about what mattered to me, my wishes, my will and POA.  I was scared and depressed, and at the start of a pandemic to boot – we felt isolated.

During my first appointment at the Cancer Centre, I met my oncologist and a nurse practitioner. They explained I would die WITH the disease, not FROM the disease. With treatment the cancer wouldn’t kill me. This was such a relief, although all the information was quite overwhelming.
I was to start treatment of 6 rounds of chemo (Bendamustine) and targeted therapy (Rituximab).  The 6 rounds were on a 28-day cycle, over 2 days.  I would spend two days at the Cancer Centre on an IV, then recover for the next 26 days and take pills at home.  My wife had to give me daily injections in my stomach for the first ten days after each round of treatment as well.
On the first round of treatment, they started the IV drip of chemo very slowly to make sure my body adjusted to it. I had a bit of a reaction (chest tightened up, itchy arms, anxiety, felt my heart racing,) and *boom* 3 nurses and a Dr appeared around me. I was given an IV of Benadryl, we waited 1/2 hour, then slowly started the IV again. Yay I made it past the first day. I was given Benadryl for all subsequent rounds.  I had another reaction on my 4th round - by the time I brought it to their attention, we had finished the chemo and I was given Benadryl-after 15 minutes the symptoms subsided.

The chemo was gradually increased in strength over my treatments. Starting at 25%, then 50%, and  on the 4th round I was at 100% dosage. The 5th round was the worse, but the 6th was close.
 After a week, my immune system would be at its lowest and I would be tired and feeling awful.  My wife described me as a shell of myself…I couldn’t do anything or focus on anything. I was so low and weak that I simply lay on the couch or in bed, cuddling with the cat, dozing. I was a strange yellow grey colour.  This would last for a week, then slowly my immune system would climb back close to normal. During the last 10 days of each round, I felt pretty good!  With every round I would have lower lows initially then higher highs just before the next round began.
Before each round of treatment, I would get blood work and see a medical team member to ensure my body was strong enough for the next round of treatment. Some of my blood work came back a bit on the low side, so it was decided to postpone my 6th round of treatment by a week to let my body get stronger.I can say everyone at the cancer centre were always upbeat, happy, and helpful.  They help their patients feel at home.
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One thing I’m glad I did was to send an e-mail to my friends and family, to bring everyone up to speed on my health and my treatment schedule. I own a construction company (building bridges and roads) and talked to all my clients explaining my condition as well.  Everybody was accommodating during my treatments.
Friends set up meal trains, taking turns dropping off meals, especially during the first week after each round of chemo.  Another friend got us onto a Good Food Box system, which we still order every couple weeks to this day.

My wife and I tried to keep a positive attitude and have fun with the e-mail updates. We were honest about my health and my situation; but it felt better if we could get a laugh out of something funny that happened during treatments.  I spent a solid week researching cancer jokes and got lots of mileage out of those for a while. They’re sooo terrible.

About halfway through my treatments I met a counselor through the cancer centre. They helped me cope with some of the treatments and other issues and feelings I was dealing with.  I know this might not be for everyone, but it sure helped me.  I wish I had started it earlier.  For the last 6 months we have connected via Zoom weekly, and now she is trying to ween me off.  She got me lots of information and put me onto some support groups. Two of the support groups I now belong to are:
  • Wellspring has a wonderful support group for Non-Hodgkin Lymphoma patients. It’s across Canada and is very inspirational, as some people have been living good lives with the disease for more than 18 years!  https://wellspring.ca/online-programs/programs/all-programs/lymphoma-canada-support-group/
  • Waldenstrom's Macroglobulinemia Foundation of Canada group; this support group is as close to my disease as possible, though not exactly the same diagnosis. They have helped me understand my disease and test results better.  It’s easy to get overwhelmed during diagnosis and treatment and I think it is important to have these support groups to help. I should also note that Lymphoma Canada has a helpful website too. https://www.lymphoma.ca

 After my 6th round was completed in October, we had a get together outside the centre to celebrate as I rang the bell on my way out the door, with a few family, friends (2 in dinosaur costumes), our dogs, and some nurses even joined! I am very lucky to have a support team like this.

I’m now at the watch and wait mode. My cancer is indolent (slow moving) and has been knocked back enough that I can get back to as normal life as possible.  (I don’t even think I was even near normal before cancer, LOL).  I’m getting stronger by the month.

My enlarged lymph nodes have all shrunken significantly and some have disappeared altogether! My bone marrow has gone from over 95% involvement (95% white blood cells) down to 30-40% involvement.  My red blood cell count is back into the normal range and holding.
The cancer will most likely slowly come back like it was before and we will have to treat it. I don’t know if this will be in a year, or 10 years, or 20. Treatment options might change, and the longer I am around the more of a chance that someone will find a cure.


Learning to live with cancer and knowing there is a chance it will come back has been tough to wrap my head around. Every time I get a headache, a sore stomach, muscle cramps, or days I am not feeling well my mind goes to a dark place as I imagine the cancer has come back. However, every day it seems to be a little easier and my lovely wife, family, and friends are a big part in helping me.
My wife and I volunteer with Prince George Search and Rescue as part of all the technical specialty teams and it’s a huge part of our lives. I took a year off during treatment, though I did help on a couple rescues, I just made sure my involvement was minor and not labour intensive. I am also coming to the realization that I might not be able to do all the physical activities I used to be able to do.

Now 6 months post treatment, I feel I am almost back to normal, and I have a personal trainer that I do zoom workouts with. I realized I quite liked my life before I got cancer.  I am still doing pretty much everything I did before. I just try to slow down, enjoy life, and let people know how much I love them, and appreciate how many helped me.

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CancerConnection was the first site I reached out to join. From this I met lots of other people dealing with cancer and was able to get some good support. Cancer Connection was a godsend early on during my treatment.
In closing, my words to anyone who gets cancer is YOU ARE NOT ALONE.
Reach out and get help from loved ones and from cancer centre, support groups etc.
I made it through treatments, and you will too!!!  There is a light at the end of the tunnel.
Cheers
Dean


Thank you for sharing your story with us Dean




Comments

Hi everyone!
Thank you for the wonderful comments and kind words! I am really blessed to be part of this community. It really has helped me navigate on my journey of life! This long weekend has been beautiful in Prince George, although the mosquitos must have just hatched cause the is LOTS of them out there!
Enjoy your long weekend everyone!
Cheers
Dean
  • Posted Sun 23 May 2021 01:15 AM EDT
Dinooo‍ - Nice to meet you, neighbour. Happy belated birthday🎂.

I have learned so much from you in just meeting you and I want to thank you for that. Learning to live with cancer can be one of the most difficult things that life gives us, I imagine...but you have done this so well.

Wishing you and your family all the best life has to offer.

Trillium
  • Posted Wed 12 May 2021 10:28 AM EDT
Dinooo
Great share. Thank you. I could just picture the dinosaur costumes! Great friends.
Sending best wishes to you and your family.
  • Posted Fri 21 May 2021 03:10 AM EDT
Dinooo

WOW!!!! not only do you build bridges and roads; you can 'construct' a great story too.
you really convey the highs AND lows of your experience, thank you so much for sharing.

I find it so interesting that you recognized your need for the counselling component...I think those of us who have been diagnosed & treated during COVID really missed out on this vital piece of a treatment plan. bravo.

I hope for you & your wife that your's is the case that doesn't come back for many many years....enjoy your new slower pace and if you ever want to share any of your slightly inappropriate medical/cancer memes & jokes know that I am your girl! ha ha

cheers & hugs to both of you
su

#meetthecancerneighbors #inspiration #nonhodgkinslymphoma
  • Posted Sat 08 May 2021 08:36 AM EDT
Dinooo

Thank you for being an amazing neighbour to us in this community!

The medical professionals who take care of us physically are of course very important. The others who we “meet”,like you, through sites like this have a special place in my heart though because they care and support each other by sharing experiences and emotions. You have the knack of talking about your cancer in a very understandable way while also sharing the emotional roller coaster and I know that your posts help many other in this community.

Sending warm and healing thoughts to you and your wife and pats and virtual treats to your pets.

MCoaster


p.s. Your dogs must love life in Prince George. Lots of space, snow in winter and hopefully not too hot in the summer. My black lab Toby enjoys the Sunshine Coast except on hot summer days. One of my cats, Tigger wears bright collars which are supposed to alert the birds of his presence and the other cat,Tom, likes to bring home live snakes and lizards! Special animals all!
  • Posted Fri 07 May 2021 04:37 PM EDT
Dinooo‍ I loved reading every word of this. You covered every aspect of the emotional and physical aspects of this disease so well from the fear to the humour you've found. I love how you described that you will die WITH this disease, not FROM it. Beautiful. Blessings to you, your wife, and your dogs and cat.
  • Posted Wed 05 May 2021 08:35 PM EDT

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