Well, here we are again - the yearly update.
5 years ago my wife got the diagnosis that changed our lives. This year is one that is even more emotional for me than the last ones, given that a few weeks ago we didn't even know if my wife would make it to this day. A failing liver, an episode of fainting - each day, each week, seemed like such a blessing. And then, one more drug, one more burst of hope. And now we are in that strange place - hoping the drug works for a long time, but knowing that unless something major happens this may be the last drug she is eligible for. The last few weeks have been amazing - liver greatly improving, and once more feeling like there is a future. All from a clincial trial drug. In a few weeks we will have another CT scan and get a better sense of the extent of the improvement.
It is hard to believe it has been 5 years - now the ninth line of treatment for my wife. Side by side, ups and downs, with this last year being the biggest scare of all. Yet, throughout it all - we fill our lives with love, and laughter, and smiles. And my wife, as always, remains more worried about others than herself. Our kids are happy and healthy and we somehow pass the time each day doing various sundry things (and avoiding many of the plethora of ZOOMing things around).
The times are strange for everyone, and even more so negotiating medical issues other than COVID. We pray for a world soon free (or mostly free) from the virus, and for the health and recovery of all those affected with the virus. It has changed our world, and like so many have said, may the world we emerge into after this pandemic be one where health care is more equitable, we realize the importance of our connections even more, and that love flourishes as never before. To all those on this website, my deep thanks as always to helping us navigate the diffcult times and to know that whatever else, we are never alone. May your lives be filled with all the blessings you give to others. Onward, onward, with hopes and dreams for another update next year!
Reply # - April 25, 2020, 10:09 AM
5 year update
GRACE Community Outreach Team
Hi scohn,
Thank you for such a wonderful post. Of course, the most important part is the encouraging trend in your wife's current treatment, one which we hope remains effective for a long time. Although I understand your concern about the availability of future therapies should the current trial drug cease to be effective, as you know there are always new drugs being developed, which may be available to her at the point she might need them. After all, had she needed it sooner, the current therapy would probably not have existed yet. But it's here for her now, and we're happy that it is.
You say that your wife, despite her troubles, always shows more concern for others than herself. Reading your message, I can't help but think that she is married to a man who embodies that same spirit. The concern and hope that you express for the welfare of others around the world is deeply moving. I think there is a very good reason you and your wife are together.
Your message evokes the memory of the day before my wife passed. A hospital chaplain came to her room and spoke very kindly to us. Before he left, he said that he would like us to pray together, and asked Liz if she would like to offer that prayer. Despite knowing that her time on this earth was coming to an end, her prayer focused only on her wishes for a better, more tolerant world...not a word about herself.
Thank you for your message. I will continue to keep you and your wife and family in my thoughts.
Jim C
Forum Moderator
Reply # - April 25, 2020, 10:46 PM
5 Year Update
Thanks Jim! Your comment on treatments reminded me of an episode of House (the old doctor show) that my wife and I were watching recently. They were talking on the show about trying to treat a cancer and House said that receptor inhibition therapy was about 10 years away. I looked up that episode and I think it was from 2006. And while it was a little sooner than 10 years, it was 2013 when Tarceva (a kinase receptor inhibitor) was approved for first line treatment (non first-line several years before that). So indeed they were about right. Getting to talk to one of the country's experts on this type of cancer in Texas was a big help, but he pretty much made it clear that most of the other clinical trial drugs in the pipeline wouldn't be available unless her liver function goes back to normal. So we will see in about 4 weeks at the next CT!