Well, I guess you can’t put this many crazy drugs in your system without something happening. I wake up at about 1:30 am, not too unusual for a bathroom run and some water, but then I’m wide awake, I listen to my self breath for about an hour before I get up. To bad it’s so early, I feel like I could go out and cut the grass. I’m sure that would impress the neighbours!
I’m feeling OK generally but I’m noticing a bit of a stuffy feeling in my head and sinus area along with a very slight headache feeling.
I wonder what the rest of the day will bring? Actually I’m wondering what the next 122 days will bring. But, as they say, one day at a time.
“So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most.”
Hebrews 4:16 NLT
Today is the 1st day of the treatment part of the journey. Chris Ford drives us to HSC and we get checked in. Before you know it I’m in chair #5, swallowed a truck load of pills and the IV is started.
After some pre-treatment meds in the IV they start the 1st of 4 IV drugs, Rituximab. I they are watching quite closely for a possible reaction and ramping up 50ml/hr every 1/2hr. This will take all morning and into the afternoon. Once this is done it’s cyclophosphamide, doxorubicin, and vincristine all together for another couple of hours. This along with the Prednisone taken earlier will complete the CHOP-R protocol.
The day seems to fly by and I get lots of support from family and friends. Shirley is with me most of the morning, but it’s pretty boring sitting around looking at me, so Mandy picks her up for lunch and drops her back home. Lots of good text messages with folks keep me busy for part of the time. That along with some podcasts, P&W music, and Pastor Leon messages on healing make the afternoon quite enjoyable. A visit from Pastor Goertzen is a big plus and he shared his cancer experiences and the Word. Bonus is that I’m finishing up and he gives me a ride home so we get a little more hang time, which is excellent.
End of day, I’m feeling good, no reactions to the treatment.
Yesterday, we met with the thoracic surgeon and his team late in the day. There is a crazy whirl wind of questions, reviewing the CT, forms, phone calls etc. and suddenly I’m being admitted later that night! I can go home, have some dinner, gather my stuff and report back directly to the ward for about 8p.m. and the biopsy is scheduled for Friday afternoon.
This is all happening very quickly which in a way is good but, my mind is racing to catch up on what’s about to take place. When I hear “biopsy” I thing some sort of big needle poke and grab operation to get the sample. But oh no, it’s surgery. A 2″ horizontal incision in my upper left chest, some fishing around between the ribs, head over to the centre of the chest an cut out a sample. For the pros, the procedure is called a left anterior mediastinotomy
When I checkin to the ward I’m put in a room with 3 other patients across from the nursing station and I can tell its going to be a noisy restless night. I brought the noise cancelling Bose headphones, so I’m sure that will help. Then, the favour of God takes over and out of the blue the charge nurse shows up and says “We have a better room for you.” It’s an isolation room that’s not currently needed and I now have a spacious private room! Thursday nights sleep is very nice and peaceful.
Lots of waiting on Friday and the time slips to late afternoon. The procedure goes well and I’m back on the ward Friday evening, complete with a chest tube draining some interesting stuff into a bag. Because of the procedure, the pressure of the tumor and the fact that I use a CPAP machine it’s decided I need constant monitoring all night long. This means a person is in the room all night long with me, watching. Very weird. This goes OK, except that in the early a.m. she is texting and have the sound on so there are quite a few “bing”, “bing” bing” sounds punctuating the night.
Saturday noon they remove the chest tube and I’m discharged
Over the next few weeks there is a lot of testing going on. Tests alternate between St. Boniface and HCS seemingly based on which facility has openings for a particular test. I get good at navigating both hospitals.
Blood work – 8 tubes are collected and I don’t even bother to ask what they are testing for. With this much, they are testing for a ton of stuff. The tech says the most tubes she’s ever collected on a single patient is 13, so not a record, but up there.
CT Scans – Now that we have a chest CT, lets look around at the brain, abdomen & pelvis. Thankfully, the do this all in one visit.
A MUGA scan – in layman terms a video of my heart function. Apparently chemo drugs can mess with your heart so this is to see how it’s currently doing and get a baseline for future testing.
A PET scan – the grandaddy of exploration, basically looking for cancer anywhere in the body (my simple take). The rough part of this one was the no sugar, no carbs the day before and only water from 5:30am. In hind sight I should have got up at 4:30 and had breakfast, but sleep seemed a better deal at the time.
So, what lead up to Day Zero? How did I get here? Some seemingly normal events turned out to have a very unexpected outcome, a cancer diagnosis.
In February I had a cold/flu that was hanging on longer that most that I’ve experienced but that wasn’t the main issue. I was having left shoulder pain, mainly in the 1-2 hours after going to bed. This is the shoulder that I dislocated in 2005 while mountain biking on the Maah Daah Hey trail with the boys. I had assumed this was just payback time and arthritis had set in, but the x-ray said “no”. However, the pain persisted and so did my Dr. visits. Each time I’d mention my shortness of breath and cough which was attributed to getting over the cold/flu. In hindsight all of these symptoms are linked to the cancer tumor. On the May 10th visit another chest x-ray was taken and that’s what really kicked everything into high gear.
Day Zero is what I’m calling the day you get a call from the doctor, who normally never calls you about test results, and the news is not good.
May 10th is the day I get that call, and it’s cancer. Some form of cancer in my chest which has shown up on an x-ray. 74 days earlier the same chest x-ray showed no problems, today there is a problem.
I’d been seeing my doctor since about mid February with a shoulder pain issue and some shortness of breath and coughing that seemed to be hanging on for a long time. At that time the shortness of breath and cough had been chalked up to a cold/flu that was going around and had similar symptoms that took a long time to resolve. On a May 8th visit I had another chest x-ray to follow up on my symptoms. This is the one that started the whole ball rolling.
My doctor arranged for a CT scan and a thoracic surgeon consult. The CT to gather more information on the cancer tumor and the surgeon to do the biopsy to get a definitive diagnosis on the exact type of cancer.
We sit on the news for a few days until the CT scan results are in and then we break the news to our family, a tough conversation for sure when there are still many unknowns. The suspicion is Lymphoma, but the biopsy is needed to confirm. Things seem to be moving very fast now.