Dexamethasone, a.k.a. decadron, is a steroid commonly used by many people for many health conditions including cancer. I’ve been taking it in various doses daily since my hospital stay in February, almost six months ago. Something very important about this drug is to not suddenly stop taking it. It is critical to taper down before stopping. My care team has been working to find the best dose for me, and in process I’ve learned a few things.
First, can you tell these two pills apart?
If you look closely enough, yes you can, but don’t they look very much alike? These are both the same drug, but one is 4 mg and the other is 0.5 mg. How easy would it be to make a significant, health-altering mistake?
Dexamethasone is a steroid that people frequently vary the dose of, so often have both 4mg and .5 mg pills in their home, and frequently need to cut the 4’s in half. One of the two main issues I’ve bumped up against is how similar they look. It is possible to tell them apart, but very challenging. If you’re taking 3mg, for example, you would cut a 4 in half and add two .5’s, but if you accidentally got that backwards, you would ingest 8.25 and that could really hurt a person. The second is that it is very difficult for the ordinary person to break one in half. These seem like simple fixes with a design change on the 4 mg pill.
I’m feeling a little more energized and today I reached out to a dear friend who has a good friend who is a pharmacist to ask for contacts and advice on how to proceed it I’m seeking to drive change here. I don’t know how much energy I have for this, but could perhaps send an email.
Also really want to give a shout out to my pharmacist at the Glebe Apothecary who cut a whole bunch of 4mg pills in half for me last time I had the prescription filled. I asked about the cost of the pill cutter, but chose not to buy it, and when my pills were delivered they came like this. Such a good gift! This makes taking 2.5 mg daily so much easier! Very grateful.
This is awesome! The Ottawa Senators care so much about people affected by lung cancer that they set aside time to sign a stack of The White Ribbon Project ribbons to give to people newly diagnosed with lung cancer at The Ottawa Hospital Cancer Centre. The Weir family is a major reason that The Ottawa Senators are part of The White Ribbon Project community.
Bill & Lisa Weir have made 400 The White Ribbon Project ribbons and given 370 of them out. They are very generous people who are giving with love, investing their time, talents and resources into people affected by lung cancer. They care. Their family is tremendously supportive. They have three grown children, twin grandsons and one due in July. Lisa is looking forward to turning 60 this year. Big milestones. In May 2020, Lisa was diagnosed with advanced lung cancer. Stage four. Both lungs. She started a clinical trial for her specific kind of lung cancer (KRAS G12C) in May 2021, and it’s working well. #ResearchMatters When she and Bill learned about The White Ribbon Project, they wanted to be part of it and reached out in the very early days to ask about making ribbons. By the end of February 2021 they had made 244 ribbons. Their daughter and son-in-law, Sam and Josh (who plays for the Senators), eagerly jumped on board as did many other family members, friends, teammates and more. What a difference their family and community is making for others. “In this family no one fights alone.” It’s so good to know the Weir family. They are kind people, good, generous and eager advocates, silver linings of lung cancer. Thank you, Weir family and extended community.
Sam Weir delivering stacks of ribbons to Ottawa, early 2021Bill Weir mailing packages of ribbons across Canada, from British Columbia to Nova Scotia
Dr. Paul Wheatley-Price is another important The White Ribbon Project community member. He is a medical oncologist who has stepped into an even bigger leadership role at The Ottawa Hospital Cancer Centre, giving out ribbons with love. He knows the story of The White Ribbon Project and the importance of love in the making and giving of ribbons. He understands the power of the Ribbon to gather, unite and uplift the lung cancer community in love. He came over to our home today to pick this new batch up. (Thank you to first born for taking pictures.) He was at the Ottawa Community Ribbon Build back in August 2021, and gave out a stack of ribbons to the newly diagnosed in the Fall and Winter. He has been showing he cares about people affected by lung cancer for years. He has played a key role in advocacy, and is a terrific partner in advocacy. He helped us get the first lung cancer outreach table on World Lung Cancer Day, August 1, 2018 at the Cancer Centre (and has continued to support them), and he helped Andrea and me with the annual patient-driven lung cancer patient summits that we held prior to COVID. Having someone like Paul be part of the team makes a phenomenal difference. Multi-disciplinary advocacy teams are powerful game-changers. Paul is a real door-opener. We are so glad he has taken on this important role with The White Ribbon Project, giving out ribbons with love in Ottawa.
Below are some pictures showing just a small portion of Paul’s tremendous advocacy (over years) for people affected by lung cancer. He is a powerful force.
Paul was part of Ottawa’s community ribbon build in August 2021.
Here is Paul today, picking up ribbons at our home. Thank you, Paul, for consistently going the extra mile.
People are asking for updates, so it’s good to let you know that though there have been a rough few days, the weekend was a little bit better. It’s hard to believe it’s already Wednesday evening. A busy few days taking care of some important items on the to do list.
Another important health update: our awesome friend and neighbour, Chris, drove us to the Cancer Centre for blood work on Monday. Blood has been successfully drawn and sent off to be tested for some potential new circulating tumour DNA which might lead to a potential precision oncology treatment option. Now we wait. With hope.
Back to the week-end update!
The kids and I have had some very good conversations, and we spent time singing together on Saturday, with the middle child on the guitar. For years, a vocal chord has been paralyzed so it’s been challenging to speak, sing, etc. Lately it’s been gradually improving, and the past few days it’s noticeably better. Very thankful! Singing is nothing like it was before cancer, but it’s very good to have recently gotten back almost an octave and a half. So thankful.
Our wonderful church family brought three meals on Thursday, as they have been doing every chemo cycle for quite some time. For a long time before then, dear friends had been bringing food. We had asked for only one meal each three weeks, but suddenly realized that one meal wasn’t quite enough. That realization coincided with a call from one of the pastors asking if the church team could bring food for us. It made good sense (since our need had increased) to give our friends a break and switch to a bigger team. We are very grateful for the abundant generosity of our community.
Friends have been coming by with bagels, treats, additional meals, additional treats, additional bagels, additional treats, and more. We are blessed and appreciative. Thank you so much!
Here is a big treat from Sunday:
Canadian White Ribbon maker and fellow lung cancer survivor advocate, Lisa Weir came (from London Ontario) to visit us with her daughter Sam today. (Thank you to my first born for taking this picture.) The Weir family has made 400 White Ribbons – with love – as part of The White Ribbon Project. We have so much appreciation for them and others who have worked together as a good, kind, loving team to make and give out ribbons with love across Canada. Lisa has also been a great friend and strong supporter. She and Sam came with armloads of dinner for us. They are very kind and good, supportive friends. #grateful
This past year, Sam brought several armloads of ribbons from London to Ottawa to be distributed with love. She is awesome! Thank you, Sam. Sam is married to Josh Brown who plays for the Ottawa Senators. They are huge supporters of Lisa and others affected by lung cancer. Sam has also brought White Ribbons for the Sens to sign. Some have already been given (with love) to lung cancer survivors. Dr. Paul Wheatley-Price is coming by this week to pick up more to be given out to people diagnosed with lung cancer. #thankful
Ribbons made with love by the Weir family were given to Hockey Legend Guy Lafleur who is a powerful advocate for people affected by lung cancer. The Weir family had sent a bundle of ribbons to Robert and Melina in Montreal so they could give them out with love there. Seeing how Guy Lafleur (who had been diagnosed with lung cancer) was advocating for research motivated our team to get him a White Ribbon to express our appreciation for his good work. Reached out to Dr. Normand Blais at CHUM (we’ve both been part of Canadian Cancer Trials Group Lung Executive). Dr. Blais connected with M. Lafleur’s team and worked to make it happen. Robert and Melina brought White Ribbons to Dr. Blais who took them into the Cancer Centre. Here are the pictures. (Dr. Blais is on the right.)
François Morin, Mustapha Tehfe, Guy Lafleur, Marilyn Lefebvre, Normand Blais.
Many of you know that Canada is a bilingual nation, with 20-25% of Canadians speaking French as their first language, including people pictured above. The White Ribbon Project is an international movement, and right from early days we discussed how important it is to make ribbon labels in local languages, and how we could best do this. The reason language matters is because language is love and The White Ribbon Project highly values love. We really wanted to make ribbon labels in French. We were not able to make it happen in time for this photo shoot above, but at the Ottawa community build in August 2021 we made the first French ribbons, many of which have been given with love. (Since then, Ribbons in other languages have also been made and given with love.) Here are some Ottawa build pictures from August.
A quick note to let you know that I’m home from my morning appointment: the port was successfully inserted earlier today. The clerk, nurses and doctor were all very kind and competent. One nurse successfully inserted an IV line in one try with virtually no pain. She also brought ice chips afterwards. 🙂 Very thankful!
Before surgery
The procedure itself was pain-free and easy (for the patient). Before arriving at the hospital I felt a bit nervous, but meeting some of the people on the team and learning more about what was going to happen quickly made me feel a whole lot better. I put myself into their competent hands and relaxed even before they gave the drugs that help the body relax. Big thank you to everyone who prayed, sent kind words and/or thoughts.
After surgery
I don’t feel any pain but do feel a bit tired. The plan is to rest today.
Below are some pictures from the passenger seat of a moving car on the ride home: Canada’s Central Experimental Farm (Ornamental Gardens), the Dominion Arboretum, and the Rideau Canal Skateway (Dow’s Lake) – World’s Largest Skating Rink and UNESCO World Heritage Site. What a beautiful, sunny day! Very grateful!
What a great healthcare team! Yesterday afternoon four skilled and caring nurses give great care at my chemo appointment (you can read that blog post here), and yesterday evening my terrific oncologist, Dr. Garth Nicholas of The Ottawa Hospital Cancer Centre, read that blog post and reached out. We exchanged messages so I could ask questions about the pro’s and con’s of ports and PICC lines. I was pretty sure I would go with a port line before messaging with Dr. Nicholas, but it was good to hear his thoughts in addition to the information in the brochures the nurse gave me yesterday afternoon. Even before the conversation he thought I would want the port line because he pays attention and knows me well enough to know.
Yesterday evening Dr. Nicholas submitted the request for a port line, so it’s already (!) in process and I’m very thankful. There are no guarantees since the request needs approval from the appropriate team for the procedure to take place. I’m very grateful to Dr. Nicholas for submitting the request so quickly and advocating for the port line in that request. Health care providers matter. Advocacy matters. Thank you, Dr. Nicholas, for being an advocate.
It took four nurses a total of seven pokes to access a vein for chemo this afternoon. The nurses were all kind and skilled. (They say my veins like to hide, and that sometimes happens in people who have been treated for cancer for a long time.) I asked for information about ports and PICC lines, which are alternative options to getting poked so many times. One of the nurses put in a note for my oncologist requesting him to have a conversation with me about this. Another nurse brought me pamphlets with more information about both of these options. I’ll read them carefully in preparation for talking with my oncologist.
It’s not usually this hard to get a vein. Typically it takes about three pokes, but occasionally, like three weeks ago, the nurse connects on the first try. (Merry Christmas!)
Getting poked frequently is part of the rhythm of chemo life. Blood work (poke) on Wednesday, chemo (unknown number of pokes) on Thursday … every three weeks. The nurses are skilled and kind, and apologetic when they can’t get a vein. I thank them for doing their job well and remind them (and myself) that chemo and their care is saving my life, so getting poked is definitely worth it.
Today I asked what the record number of pokes was in their unit: 12. So, keeping things in perspective, it went pretty well. They found a vein, so I didn’t have to be sent home without chemo. It only took 7 pokes. It only took 4 nurses. The chemo all went in the way it should, and is working to help keep me alive. I’m now home, feeling well, and very thankful for nurses and the kind and skilled care they give.
Through the Valley 