No changes – that’s good news. Last week we went for my day of appointments at Dana-Farber Cancer Institute. If we had known of the COVID-19 outbreak in Boston I think we would have still gone, and in the way we did. All day we practiced as much “social distancing” as we could, and used hand sanitizer frequently. DF was already geared up for COVID-19, with doctors being told no business travel, online training, and a noticeable difference in greetings – no handshakes. At DF they always have to take extra precautions in sanitizing, etc. because of the fragility of the immune systems of their patients. So, after a very long day of driving (well riding for me) and appointments, I got the news that all remains the same, and picked up my trial medication (lorlatinib – 33 months) for another 12 weeks.
Staying positive is usually easy for me. I’m definitely a “look on the bright side”, “glass half full”, hope-filled person. But sometimes this cancer life gets me down, and my logical self says, “Understandably so”. This blog is intended to share my experience to inform and help others. It isn’t to paint a rosy picture, but rather an honest one.
I am grieving, as much of our peninsula community is, because this cancer beast caused the death of a beautiful young friend recently. Inflammatory Breast cancer is another rare cancer, often diagnosed at late stage. She, too, shared her cancer journey, hoping to inform, educate, and bring hope to others. It is inspirational reading. https://rosannamcfarlandsjourney.blogspot.com
All winter I’ve avoided crowds, not wanting to catch something after being hospitalized in early January. I can’t spend much time outside in the cold as it bothers my breathing. I went to one basketball game for each of the grandchildren, and that’s pretty much it for large gatherings. This is because of cancer. In the past I would have attended as many as possible. So too I missed Rosanna’s Celebration of Life because of cancer. Yet I was there by “being” with them, listening to songs on her playlist, reading Rosanna’s blog, praying for peace and comfort for her family.
And now, here we are – all of us dealing with a pandemic. Other than the very real concern about catching COVID-19 (I’m high risk, with a damaged lung and we are, umm, over 60),we’re much better prepared to work my way through the next months than most, I think. I just filled my trial prescription and won’t have to return until late May. (Some friends in the cancer world are weighing the pros and cons of going to even necessary appointments.) We learned how to sanitize everything when living at the Hope Lodge while I was having radiation at DF, so I feel safe in that respect. We don’t have jobs that we will lose. (Hoping the lobster industry will get bailed out like the cruise lines will.) I have put myself under house arrest, no visitors. (My friend Kathy and I will send each other interesting photos, and fun jokes and quotes.) I can enjoy the coming of spring, being outside as much as I want. (Pussywillows are out here!) I have 6 artist trading cards to make for swaps, a junk journal in progress for a friend, and two FB group monthly art projects to work on. And, I have Dan, two dachshunds, and four goats for company. The best! We have full freezers and cupboards.
I am still ever so grateful for this gift of time that I’ve been given. All the hardships of living with cancer are just hardships right now, things I must deal with proactively as they come. Living to find joy in the everyday EVERY day is a gift that I hope all who breathe can understand and enjoy. I am grateful, too, that so many people are now taking this pandemic seriously. (I wish our President and his administration had, and would. But that is now for November.) I’m grateful to the many front line health care workers. This is a novel (NEW) virus that obviously spreads easily and rapidly. Think about your elderly and high risk neighbors and relatives. (My relatives and neighbors offered help to us and Dan’s dad.) We need to work together to not overwhelm our health care system. Social distancing, washing hands and sanitizing surfaces will help slow the spread. Enjoy some extra time outside in the spring weather.
2 thoughts on “Health Update (Good news)”
Great news to read that you are still doing fine with Lorlatinib. Your time with Lorlatinib lasts similar long as my whole illness with Alk.
I need to say maybe again thank you that you posted your experience with your neuropathy in your hands – that was the first report I found on the connection between somekind of neuropathy and Lorlatinib (my docs did not believe me). It was carpal tunnel syndrome and what helped me to stay with high dose of Lorlatinib was a simple device similar as this worn at night: https://www.bandagenspezialist.de/shop/product/bauerfeind-manuloc-handgelenkorthese/?gclid=EAIaIQobChMI7MOOkbua6AIVgsjeCh2mLgRpEAQYAiABEgLNXPD_BwE
Thank you very much and good luck for the future!
I think a lot of people don’t feel they can share all their side effects with their oncologist, especially when in clinical trials, for the fear of reducing dosage too much or taking the med away. Thanks for the tip, and best of luck to you too.