Tests

No news isn’t always good news

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Time for an update about my health in general. Many of you have reached out to ask how I’m doing, some of you have told me you’ve been wondering but haven’t wanted to ask. I’ve received so many messages that I haven’t respond to most of them. I’m very grateful for the care.

Unfortunately there isn’t any more news from the testing done while I was in hospital last month. I’m on oxygen due to shortness of breath, and we don’t know how to treat whatever is causing the shortness of breath. The hospital tests ruled out major things like cancer, heart issues, fluid build-up, blood clots, several infections. We ended up with an uncomfortable mystery.

Obviously breathing really matters, and not knowing why a person’s blood oxygen level dips so low is not good news. We would really like there to be better news to share with you, but right now, sadly, there isn’t.

So for now we will hold onto hope and stay the course with the current treatment while looking into other possible treatment options in case this may be caused by cancer growth (which it might be, though the scans do not clearly show this). There are no clinical trials that we know of that could be a good fit for someone in my situation right now. (If you are in Canada and looking for a clinical trial that might be a good fit for you, you can connect with the Clinical Trials Navigator who is there to help you! Canadian Cancer Clinical Trials Navigator: https://3ctn.ca/for-patients/clinical-trials-nav/ )

Since starting on chemotherapy in 2020, each scan has led us to believe that the cancer is either stable or smaller. We continue to believe that the current treatment is effectively slowing the cancer’s growth (even if not fully abolishing it), so it’s definitely better to continue than to stop. We will go ahead with chemotherapy number 23 tomorrow, do more testing (bloodwork to be done on Monday and sent to Canexia in Vancouver BC Canada), and hold onto hope.

(One of the ways I hold onto hope is to pray, another is to read the Bible, another is to listen to wise friends.)

Fellow lung cancer survivor Taylor and I plan to connect tomorrow morning. (We met in person last chemo and get chemo on the same three-week cycle at The Ottawa Hospital.) I’ll go in a little early to get to see him and give him a white ribbon www.thewhiteribbonproject.org . The White Ribbon Project connects people affected by lung cancer worldwide, and is helping to draw people into community locally also. The power of the white ribbon. How good is that!

You may have noticed I’ve been a little less visible on social media in recent weeks. Yesterday after the port insertion I missed out on uplifting and honouring amazing women for International Women’s Day #IWD2022.

Honouring and uplifting people is good to do every day. Since I didn’t yesterday, today I’m sending out a big general cheer for the women who do tremendous work in the cancer advocacy landscape (too many to name individually, so I’ll name some of the organizations where we may have worked as teammates together): CCTG, 3CTN, OICR, CCS, IASLC, ILCF, LCC, SU2C, LHF, CCSN, CAPO, IPOS, CADTH, TOH, CCMB, PMH, CIHR, LUNGevity, GO2, LuCE, ALK+, AACR, ASCO, … (+ numerous other advocates who have inspired outside of these organizations). What a list! If you are an advocate and there is a way I might help you connect with some amazing teammates in any of these organizations, please feel free to ask. Connecting and uplifting people is a passion. #team

Ottawa Clinical Trials Team (2017?)

In the pictures above are just a few of the amazing women (and some men) who have inspired many of us. (These are pictures I could quickly find and put on my blog tonight.) So many are not pictured above, and there are very many more to come!

#hope

In Between Bounces

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ct scan oral contrast

Two large cups of Oral Contrast which I drank between 2:30 and 4:15pm, the day of the scan

I had another routine CT scan last week, followed by a few days of fairly typical post-scan fatigue. “You don’t bounce back quickly from these scans,” observed my hubby. We’ve often said this about my energy levels in recent years, but this time these words evoked an image which captured my imagination: a ball hitting a wall in super slow motion. What a perfect picture of how my energy level gets flattened, then takes so much longer to be back to “the new normal”.

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I can relate to that tennis ball, flattened on impact, then regaining its shape ever so slowly! (tennis ball video)

I don’t bounce back like I used to! There are many variations on the, “You don’t _____________ like you used to,” theme. Choose your favourite word or phrase to fill in the blank! I could write a whole series of blog posts about the ways we could fill in the blank, and the ways I grieve and miss my pre-cancer life. It would be easy to get caught up in this way of thinking instead of being grateful for what I can do and what I do have.

Rather than focussing on what I can’t do, I’d much rather focus on what I can do.

My intention is to invest time and energy into my priorities, like family and friends, being involved in church, leading Bible study well, and -lately- caring for lung cancer patients and helping to raise lung cancer awareness and funds for research.

It takes me a long time to bounce back, but in between bounces I’m trying to find my particular niche in the lung cancer landscape. I want to strategically help make a difference for lung cancer patients, improve outcomes and help us hold onto hope.

Lung Cancer is the deadliest cancer. Although it receives only a small amount of money for research, that investment is leveraged into a large impact for some lung cancer patients. Imagine the difference more funding could make!

If you’d like to work with us to explore ways to help lung cancer patients, please message me. It takes a whole team!

Finally, an update!

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Being a cancer patient is not for the faint of heart! I’m just home from another routine CT scan. I get them every three months. The scans may be routine, but my reactions are not! Sometimes I feel stressed. Sometimes I’m relaxed. Often I’m in a pretty good mood and have enjoyable conversations with people I encounter at the hospital.

This time, I felt unusual stress in the lead-up. I don’t know why and I don’t think there has to be a reason. It’s very common for cancer patients to face “scanxiety”.

Maybe I’ve been thinking too much about this time last year: I was feeling great, went for my CT scan and was blindsided by the results which led to a change of meds. The new meds seem to be working well, and have far fewer side effects. I have no reason to suspect there will be bad news from this scan.

But still the lingering stress trudged through every day. I prayed and asked my Bible study group to pray too. That made a real difference, but even so I occasionally noted the undercurrent of stress ready to ripple through my (mostly) peaceful heart.

In the hours leading up to my scan I felt fine. Joyous even. On my way into the hospital I was thinking of a friend – a lovely person who works at the hospital and just got a big promotion. I was hoping for the opportunity to congratulate her in person, and prayed that I would run into her along the corridor by the coffee shop. There she was, right where I prayed I would see her, and it was wonderful to give her a hug and hearty congratulations!

I found myself praying for other folks in the waiting areas and happily chit-chatting with hospital staff. All was going well until I heard the CT machine from the next room saying, “breathe”. The strangest thing happened: a chill went up my spine and for that moment I was filled with dread about the procedure. I prayed and felt calm again, but that was a tough moment, and this scan wasn’t an easy one. The nurse couldn’t start the IV on the first go. He fished around and still couldn’t find the vein. (Ouch!) I prayed it would go better on the second arm, and it did. The technician was joking about a bunch of things and we were laughing together, but then suddenly he started talking about the changes to our city in recent years and the dramatic increase in gun violence. This is a subject close to my heart, and it’s hard to hear this as I’m lying on the machine about to have a test. There were a few other things that also made it hard to keep calm and relaxed.

But while I was waiting in the observation area afterwards, I became aware that other patients were having a much harder time than I was. The nurse had an even worse time finding a vein in the woman after me. She sounded extremely stressed. The man after her was worried about having a reaction to the dye, since that had happened to him before. CT scans are not for the faint of heart.

I’m thankful I made it through fairly well. Now I just have to wait for the results from my oncologist!

IMG_2995Thank you for standing with us! It has now been a little over four years since my diagnosis, and we give thanks that my health is so good!

There is so much I’d love to tell you about! I know there was a longer-than-usual gap between posts, and I’m sorry if you felt any anxiety about that. I was very sick and tired out through November and December and even part of January. I’m so thankful to be getting my energy back! Here are a few quick updates.

My Lung Cancer and Jelly Beans video has had over 700 views, and many of you have made donations toward lung cancer research. Thank you very much!

 

Here it is if you want to see it again: (pardon the look on my face at the beginning!)

I’ve recently done some fundraising to help me get to the LUNGevity Hope Summit this April. I just learned today that I have raised the full $1500. Thank you to all who have given! Your gifts are both encouraging and helpful!

A large group of us are raising money to fund research into the specific kind of cancer we have: ALK+. Together, our whole team has raised about $300,000. (I think!) We surpassed my own personal fundraising goal of $500., and I’m wondering if I set my goal too low. If you would like to make a contribution towards research into my specific kind of cancer, you can still give here: Jill’s ALK+ Lung Cancer Research Fundraiser. (This is to an American charity, so receipts will only help those who pay US taxes.)

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Our pilot project for the Ottawa Lung Cancer Support Group is completed. It has been a tremendous success! This group of women connected well and we have really enjoyed spending time together. In fact, I invited them over to my home last week! Our leader is a real gift to us, and her skills and experience make a significant difference in the quality of the group. We have shared some ideas and soon the decision will be made about how to move forward to support more lung cancer patients. We are very grateful for the generous support of Lung Cancer Canada and The Ottawa Regional Cancer Foundation. If you know someone diagnosed with lung cancer in the Ottawa area, and you’d like to learn more, please be in touch – either with Lung Cancer Canada or with me.

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One in thirteen Canadians will be diagnosed with Lung Cancer

I’ve participated in a few other (lung cancer) events and there are a couple of more in the pipeline. I’ll try to keep you updated better in months to come!

Thank you again for standing with us. We can’t tell you what a difference that makes!

 

 

An Extraordinary Week

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I’m resting on the couch with my feet up, reflecting with thankfulness on how good and how strange this week of testing was. I am so glad I made it through! I’m coughing a lot, and looking forward to starting new meds on Monday. (Hoping they work really well!) There are so many stories I could tell and too many thoughts to mention, but let me give you a taste …

Tuesday was blood tests and EKG. As I’m driving to the hospital, the huge dump truck beside me starts moving into my lane! I stayed calm and reacted the way they taught me to in driving school. All was well and I made it safely to the hospital, praise God.

I was rather shaken and physically shaking when I arrived at the chemotherapy unit and checked in. In the waiting room, a man verbally attacked me for no rational reason, but it hit me hard. I’m guessing he was probably feeling frightened and dealing with his own stuff in an inappropriate manner. I was feeling extra vulnerable due to the truck incident. I walked away, then burst into tears. I am thankful for the caring staff at the hospital who comforted and protected me. I made it home without any further incidents!

Wednesday was the bone scan, and my husband Jono asked people to pray that I wouldn’t cough much. I typically cough almost constantly when lying on my back, and that’s how this test is performed … but you have to stay still to get results.

I lay down on the machine and coughed almost immediately, but – and this is hard to believe – that was the only time during the course of the test that I coughed! Wow! Praise God! Thank you for asking for prayer, Jono. Thank you all who prayed.

Thursday was the CT scan – also on my back. Let me say that it went really well. No problems. No coughing. No allergic reactions. Praise God! Thank you for praying.

Now let me tell you what was challenging …

Last CT scan, a friend’s appointment was scheduled right after mine so I greatly enjoyed spending time with him and his wife. This time a different story: a prisoner in an orange jumpsuit with handcuffs and leg cuffs was scheduled right before me, so I shared the inner waiting room with this man and two security guards. I was feeling a bit scared before I got to the hospital, and my apprehension increased. Then there was an emergency situation with the person ahead of us, so we ended up waiting together for a very long time  – over an hour! I thank God for keeping me calm and helping me to see this man as a person rather than simply a prisoner. I am thankful for freedom! I am also thankful for the opportunity to be in an uncomfortable situation that was safe. I spent a fair bit of time praying while I was there! I am thankful for the friends who were praying for me.

So this has been an eventful week on several levels, with new situations and many emotions to process. I am thankful for the love of God which surrounded me, even in the presence of the yelling man and the prisoner. I am thankful for the peace of God which filled me, even in this variety of stressful situations. I am thankful for the gift of prayer and the way God’s peace pushed away anxiety and fear when I prayed. I am thankful for God’s protection in the midst of danger. I am thankful for the mercy of significant chunks of time on my back without a cough. I am thankful for the kindness of strangers, and the beauty of Spring erupting all around me. I am thankful for the love and generosity of friends and family. I thank the Lord who made me.

I thank you.

Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6.7)

P.S. –  If I could ask for one more thing … Thursday morning a woman bumped into my arm. It was a fairly hard bump from something she was carrying as she rushed past me. She apologized, and I didn’t think much of it at the time. I figured I’d have a bruise, but it seems to have triggered severe pain and muscular spasms in my rib cage. I’m tired and sore, but the week-end is coming and I want to be present with my kids. If you’re the praying type, I would appreciate your prayers for energy and healing! Thank you!