Home, Emergency again, then Home again

I’m very glad to be home! Got home late Tuesday afternoon (Feb. 15) from hospital, then was admitted back to Emergency on Thursday afternoon (Feb. 17) after chemo but was allowed to come home again later on Thursday (yesterday, Feb. 17).

Tuesday was a flurry of activity to get everything ready for me to go home from hospital. I’m very grateful for all the people who worked hard to make that happen.

We did a blood transfusion and organized home oxygen which is definitely necessary. My blood oxygen drops very quickly without it, but the good news is that is comes back up very quickly with oxygen. My blood oxygen was very low Friday night when I went to emergency, at a level where a person can faint. They quickly got me up into the normal range. My friend Shonna loaned her pulse oximeter to stick on my finger to check at home. It has been showing good numbers for both the blood oxygen levels and pulse rate with the oxygen.

While I was in hospital they ran lots of tests and ruled out many bad things which is such a relief, but they weren’t able to determine the cause of the low blood oxygen. One of the tests they did was a bronchoscopy, and it will likely take a couple of weeks to get all the results back from that. They took samples and are growing cultures to see if there is a treatable infection that we’re dealing with.

I am so very happy to be with my kids. I had left the house on Friday evening (Feb. 11) for a CT scan, then ended up being away four days. I went suddenly to Emergency straight from the CT scan, then was admitted to hospital a couple of days later. I got home late Tuesday afternoon (Feb. 15) – thank you Mieke for the ride, and everyone else who offered – so very happy to be home with my kids. It was good to talk with them and listen to them and just be with them. They spoiled me with cookies and cake and we enjoyed celebrating together.

Thursday (Feb. 17) meant back to the hospital for chemo as usual, every three weeks (cycle #22). This time another lung cancer survivor advocate, Taylor Westerman, was also there. We’d met online and have been trying to connect in person. (He heard about The White Ribbon Project, and I really want to give him a white ribbon, but we haven’t been able to make that happen yet.) I heard a nurse say “Taylor” and it seemed that the guy across the chemo unit looked like the Taylor I’d been connecting with through Messenger, so I called out to him and sure enough, it was Taylor Westerman! It was so nice to see him in person, and when I was leaving I popped over to say a quick hello and take this picture (below), though we didn’t chat for long because I wasn’t feeling well. Notice Taylor’s great tee shirt, and I’ve got a LUNGevity HOPE pin on my lapel. Lung cancer awareness happens 24-7, 12 months a year!

After chatting with Taylor, I paused to say a very quick hello to the awesome clinical trials nurses who took such good care of me when I was on a life-extending clinical trial for the investigational drug “Ceritinib” from 2015-2017. (The trial was testing to see how effective it is when taken with or without food.) I am so thankful for that trial which not only kept me alive until 2017, but long enough for more new drugs to be approved and accessible here in Canada, drugs that are keeping me alive today.

I planned to head home after briefly chatting with the clinical trials nurses but they noticed I was looking puffier than usual. They asked a few questions and before you know it they got together a bag of snacks (big thank you!) and a wheelchair for me to be wheeled to emergency, treated with IV drugs and observed for a few hours. The good folks in emergency wanted me to stay overnight, but agreed to let me go home. Mieke kindly came to pick me up and take me home again. The traffic was terrible, the weather was awful, but Mieke drove very carefully and got us both home safely. Thank you, Mieke. Thank you also to other friends who offered to drive.

So I’m home again, again, and very grateful. Also extremely tired, thanks to the double whammy of chemo and Benadryl. I can barely keep these eyes open so hope this post makes sense. Special appreciation to the oxygen people. Also to my awesome oncologist who happened to be on call the week I was in hospital. He’s only on call about three times a year, so this was a huge gift for me. I also am grateful for a neighbourhood connection with the very nice family doc who was working on the floor. When she mentioned that she teaches family docs and med students I went completely into advocate mode and steered the conversation. She told me she had been in contact with another lung cancer advocate in Ottawa. Andrea Redway had already reached out to her. Way to go Andrea! Andrea is awesome! I made sure the doctor knew it, and encouraged her to reach out to either of us anytime. Then after the doctor left I messaged Andrea to tell her that I had also met the doctor. It’s so good to be part of a team. Very grateful for Andrea and others like her who share the load. The more we work together as a good team, the better we’ll all be. #team

Very grateful for people from Parkdale United Church who are bringing us dinners: yesterday, today and tomorrow. Three meals every chemo cycle makes our lives so much easier. Thank you! #team

Also a big shout out to Hospice Care Ottawa for delivering a lovely care package (photo below) on Thursday (yesterday) with a homemade valentine’s day card from a local school and some snacks. Very thoughtful!


Meet Kate, one of my friend Connie’s friends from when Connie lived in NYC. Kate was diagnosed with lung cancer. Anyone can get it. Connie still connects regularly with Kate, and connected us when she learned that Kate had LC. Kate now lives in LA and is treated by an excellent doc who Chris Draft knows. (Chris even introduced us at the AACR Annual Conference in Atlanta, in April 2019.) After the Super Bowl, Chris took the time to meet Kate in person in LA and give her a The White Ribbon Project Ribbon. I’m so glad that Chris and Connie went out of their way to make sure Kate knows she’s not alone in her lung cancer journey. What a difference that can make! Kate, Chris and Connie thoughtfully let me know (while in a hospital bed in snowy Ottawa) that he had delivered the ribbon. Thank you. The power of the Super Bowl! The power of The White Ribbon!

#TheWhiteRibbonProject #deliveryguy #team #friends #lungcancer #gratitude

Movin’ on up

Thank you so much for your kind words thoughts and prayers. Your support really helps keep a person uplifted, and we all know the difference that can make. Know that I’m grateful, even though I have not had time to respond to many messages. There has been lots of activity lately.

Did I mention that my oncologist is working (at this hospital) this weekend? He’s been in to see me, both yesterday (with the charge-cord-finding-doctor) and today. I’m grateful for that. What a difference it makes to see someone you know, who knows you and the case history. Trust matters and I’m very thankful that my oncologist is here.

Still no clear answer for what is going on or how to make it better, but more things have been ruled out. The plan is to see the pulmonologist on Monday or possibly later today. I was also given a steroid, and a blood transfusion will probably happen this afternoon. In the meantime I’m happily munching on ice chips, one of my favourite treats in the world!

I’ve now moved up to the seventh floor, in a pleasant room with a big window and view of the sky and quite a few trees among other things. I have three roommates who speak at least two languages other than English (one is sleeping). My bed seems comfy, with two pillows, and there’s a good chair by the window which I’m now sitting in.

It’s quite busy here, lots of hubbub, which may contribute to this post seeming choppy, repetitive and/or disjointed. Many pauses in the writing of this post with nurses, orderlies and doctors stopping in to do their work! A respirologist / pulmonologist came by a little while ago, asked lots of questions and suggested a few ways their team may explore further, including putting a scope down my throat. I’m not keen on that idea and he said he didn’t particularly enjoy doing them either! Haha! He plans to be back with the team later. He was also very kind. He noticed there was no table to use for lunch. I wasn’t concerned about it but he took the initiative to look for one, then set up something makeshift. (It seems the table which normally goes with this bed has gone seriously missing, not just out in the hall.) I’m grateful for people like this doctor who go above and beyond.

This might be a good time to take a few moments to rest if possible. Thank you for so many kind thoughts, words and prayers. I feel humbled and blessed by this outpouring of kindness and care. What an amazing group of supportive friends, and what a difference you make while I’m here in the hospital.

Recharging this Saturday Afternoon

Saturday afternoon update: more tests have been ordered and run, and results are coming in. Thankfully some seriously bad possible causes have been ruled out. We still don’t know exactly what is going on, but it looks like I will probably be here in hospital until Monday.

My phone battery ran very low, and the doc who came in to see me today checked the nursing station and found a charger that works for my phone. So kind!

My awesome kids packed up a bag of things. I gave them a list, and double-checked the most important things, including my phone charger. My friend is on her way here now to deliver them. I’m very grateful. I didn’t plan to spend the weekend in hospital, so I didn’t bring anything, not even a winter coat. Because of COVID, I never go anywhere these days except to walk the dog (key in pocket) or to medical appointments. These days my purse isn’t well stocked with basic things that it would normally carry (in case they are needed). When we pause to think about it, there are few things that we really need: our meds (if we take any), toothbrush and paste, a phone charger, maybe some fresh clothes. I’m grateful that those things, and quite a few bonus extras, are on their way here for me now.

Very grateful for the support teams that surround us, near and far, sending love, kind thoughts, messages and prayers. And for those times when we find ourselves without the basics, like a phone charger, much gratitude for the strangers who go above and beyond to show empathy and care.

Shortness of Breath

This is a good time to let you know that I’ve been experiencing some shortness of breath. It has suddenly gotten much worse, and yesterday a phone call to the nurse updated the team with that news. She thought we should try to move the date of my CT scan up, and took steps to make that happen. I got a call on Thursday afternoon with a reschedule for late Friday evening instead of next Friday. Very thankful for a good care team and the opening at the hospital.

When my friend dropped me at the main entrance to the General campus of The Ottawa Hospital, I thought I would be able to walk (slowly) to the CT scan module, but it turned out that I couldn’t even make it to the COVID screening station. I sat in a wheelchair that was “parked” nearby and texted my friend who came straight away and wheeled me to my CT scan, then to Emergency. A kind nurse there (who had lost both parents to lung cancer) hooked me up to oxygen, and my blood ox is now at 100%. I’m feeling so much better!

Obviously we need to figure out what’s going on and come up with a plan, so we’ve run a few tests and are waiting for results.

I plan to update you again when we know more.

Just checked again and the monitor says my blood oxygen level is still 100% – what a great feeling. Very thankful for oxygen.