Preparation for the first chemo cycle and the prayer chain that blew us away (and nearly ‘broke’ dad’s system!)

April was a big month –so this may be a longer read! There were several medical appointments, there was waiting and more (at times anxious) waiting and then there was the first chemo treatment at the end of the month. There was also a prayer chain for mom which in a weird and wonderful way caused website challenges for dad who sets up these prayer chains for St Clare and Sts Cyril and Methodius parishes. But let’s start in order:

All patients need to attend a session called “chemo-teach” prior to their first treatment. This is an introductory classroom type of session that the BCCA runs on a regular basis for all those about to embark on the chemo journey. We attended this session on April 4^th. There were 3 other patients and their support people in addition to mom and us, each patient with a different type of cancer and chemo treatment. The nurse who was running the session had access to medical information on each patient as well as their chemo plan. We arrived first and he talked to us individually for a bit. He acknowledged that mom’s upcoming treatment can be pretty tough with side-effects, but he also had lots of information about managing the side-effects. The session itself felt like a mix between a biology, chemistry and psychology class to me. Then there was also a crazy amount of “if/then” reasoning. For example, something to the effect of:

• If a fever develops within the first 48 hours, this is considered “ok”- then monitor and take Tylenol as needed.
• If fever develops after 48 hours and it is work hours Monday to Friday then call this number and wait for a call back from a BCCA nurse.
• If it’s outside of work hours then call another number.
• If it’s this type of symptom then call the oncologist on call.
• If it’s that type of symptom then go to emergency.
• …

Needless to say our heads were spinning with information overload, which was ultimately not super clear. I think we all felt a certain level of anxiety of what we would do if any of these side-effects would show up and who would be deciding what steps we would take.

Later that week, on April 6^th we went to see Dr. M2 (pancreatic surgeon who we got set up with through Dr. M – see March summary). We were incredibly grateful to both Dr. M’s for their kindness and generosity to get this appointment. Mom, dad, Sasha, Maria and I all piled into the office, which was a little comical and uncomfortable because we had to wait for him in this small space with south facing windows which don’t open, with the doors shut, and no air conditioning. Given the topic at hand we weren’t exactly laughing about it but as I look back on the scene, it’s a little funny – hot flashes, sweaters coming off, sipping water etc. Dr. M2 was AMAZING. Now this is what I call someone who “gets” what it’s like to be a patient or the family that just seeks to understand what is going on in their body and what options are available. This is what we had hoped for from mom’s surgeon (see March).  Dr. M2 seemed to understand that sometimes just understanding is so therapeutic and helpful for patients and family. Dr. M2 gave us one positive insight about Dr. S’s abrupt call – he said that Dr. S actually may have saved us time, and by calling right away was able to make the referral to BCCA right away. If they had called us to book a follow up appointment with him a week or two later to tell us the treatment plan, then the referral to BCCA could be starting later etc. I don’t know about the rest of the family but I found this insight helpful and even thought I still think Dr. S could have done a much better job on a human level, it made forgiving him just a little easier :). Dr. M2 also supported the chemotherapy plan for treatment, so that was reassuring.

With everything going on, and with so many people reaching out to ask about what’s happening and telling us they are praying for mom, we were urged to set up a prayer chain for mom. Mom would have day surgery on on April 16^th to get her “port” inserted, and her chemotherapy appointment got booked for April 24^th. For anyone interested in knowing more about how a port works, I found this short video.

The response to sign up for the prayer chain was incredible for us to witness. It strengthened and encouraged us a great deal and we felt like there were “prayer warriors” all around us, lifting us up and walking with us. If you are reading this update and you had signed up and offered up your time to pray for mom, thank you from the bottom of our hearts. The comical part in this was that the amount of people who signed up caused some minor technical difficulties for dad because on the back end, the field where people’s name are listed had a max number of characters and it filled up. Some people weren’t able to sign up and so dad had to do some quick fixes. Thank you all for creating this “problem” by signing up. I know it meant a lot to mom and we would be checking and thanking God every day for the love and care He shows us through you.

The following week, on April 13^th, we requested a follow-up appointment with Dr. O (oncologist) because as a family we had a lot of questions about the specific chemotherapy treatment versus some other chemotherapy options he had mentioned. Essentially Dr. O was suggesting the most aggressive treatment that mom can handle and he felt that she can handle the most aggressive one they have available based on her current health. Mom was very anxious about the side effects and we wanted to check out if this truly was the option we wanted to go with. And so another family outing to BCCA took place. If it wasn’t for mom’s diagnosis, these outings would be so fun! But if it wasn’t for mom’s diagnosis, these outings probably wouldn’t happen either given everyone’s busy lives. So it’s a catch 22 isn’t it? But either way, the five us piled into Dr. O’s office and had another 1.5 hour consultation with him. The appointment helped answer our questions, and feel more confident with the chemotherapy plan, while still recognizing the side-effects would likely be challenging.

The first chemo treatment was on April the 24^th. It was to be a 6 hour appointment as this chemo treatment would have 3 types of drugs and they needed to be administered one after another. Sasha accompanied mom inside the chemo room, while dad waited in the waiting room, and then they traded spaces. We were all connected through group chat so we got periodic updates from whoever was with mom. It was a much awaited day and overall, the appointment went smoothly. Mom had a pump connected to her port for the next couple of days which continued to provide one of the drugs in a very slow dosage. She had to carry around a fanny pack type of holder for the pump which was a little uncomfortable for daily activities like dressing, bathroom, shower etc.  The first few days after chemo seemed to be ok, however on Friday the 27^th, mom began to experience severe pain. In short, over the next 4 days, we made several calls to the nurse’s hotline, the oncologist on-call, and visited the emergency room three times. Each visit took 4-8 hours, which was exhausting and tough especially for mom who was in excruciating pain. It was also a very difficult weekend for the rest of us. I had never seen mom in such agony and we felt helpless and devastated by what she was going through. Mom was prescribed hydromorphone for the pain and sent home each time, but finally on April 30^th, the ER doctor decided she will need to be admitted to the hospital so that her pain can be treated more effectively.

It was nearly midnight when the decision was made that mom would stay overnight in the ER and be admitted to a bed upstairs in the morning. Dad’s birthday is on May 1^st so we sang Happy Birthday to him in hushed voices at the stroke of midnight :). Sasha spent the night in the ER with mom as there had been some confusion about medications with the ER doctor and nursing staff, and we felt more comfortable with one of us staying there to advocate for mom who was in and out of pained sleep.