Tag Archives: support of friends and family

And so it begins

Milk thistle and dandelion tea plus a hella lot of water and I got those enzymes down more than forty points. So my biopsy was a go yesterday.

Happy to report that it all went smoothly and to my delight (the perks of a progressing cancer) the surgeon was able to go in from the side of my chest rather than straight through my left boob (no fun). This meant that A. I could watch the biopsy on a screen–not everyone’s cup of tea but I thought it was wicked cool–and B. my time in recovery was spent on my side rather than flat on my stomach; so much more comfortable.

It was a long, long day and big credit to my friend Diane who ferried me to and from. I am so very grateful for my incredible cadre of friends.

This morning a friend of Diane’s kindly picked me up at 5:30 am for the first day of the DS-1062a trial (‘DS1062a is a trophoblast cell-surface antigen 2 (TROP2)-targeting antibody drug conjugate’).

Room without a view

I have now been at the Termeer Center for Targeted Therapies for almost five hours. In that time I have been weighed, had two vials of blood drawn, and the first of three EKG’s taken. I have also peed twice, napped, and met with Dr. Lin, my new oncologist now that I am on trial. Drug was finally released an hour ago but it is frozen and takes three hours to defrost, so infusion will not begin until one. Lots of hurry up and wait.

Last night I was pre-dosed with five 4 mg tabs of dexamethasone as well 360 mg of fexofenadine, both of which will be repeated just prior to infusion. There have been lots of reactions to this experimental therapeutic but fortunately I am entering trial after MTD has been established and they are getting a better handle on how to handle side effects. Also anticipated are some pretty gnarly sounding mouth sores (dime size, painful plaques) which could put a crimp in my dating schedule 😉 I am to prophylactically swish with a steroid mouthwash and have a paste for when they emerge. I have been advised that I shall likely lose weight (those sores) and may lose my hair as well. And there have been some eye issues, so I have been using lubricating drops. Aside from that, fatigue and mild nausea. There is always a price to pay.

On a positive note, some of the side effects of lorlatinib have noticeably receded. My skin—a mess of crusty sores as of late, has begun to clear up and heal (hallelujah). I had to go off of statins because of my elevated liver enzymes and my cholesterol was through the roof last time (high 300’s) but hopefully that shall start to come down as well. The cadence of my speech is speeding up (‘So you’re not going to sound like John Wayne anymore?’ asked one of my friends) and I am already feeling more like me: Linnea pre lorlatinib. Less rage-y, more clearheaded. I like it.

So consider this installment one. More to come post infusion.

xo

A little help from my friends

I have the greatest friends. Some old, some new, some whom I know only through this blog or my online support group. Each and every relationship enriches my life; when it comes to friendship, I am a wealthy woman indeed.

In this time of fresh challenges, my friends have played an important supporting role. Knowing that I have at times been overwhelmed, they have helped us make arrangements for additional help when David is traveling. A special friend has set aside some of his Hilton points in case an overnight stay in Boston is necessary. Several days ago I received not one, but two beautiful flower arrangements in the same day from the same friend. “Just a little color to brighten your day!” read the first enclosure. Several hours later some beautiful roses were delivered, with another note enclosed: “A little more color–and hopefully some fragrance too!”

fresh blooms

fresh blooms

A dear friend who is also battling cancer and who has availed herself of alternative treatments sent me a card with a generous check, so that I can explore the same option. Yet another friend made arrangements for me to receive counsel on a matter that was troubling me, and she picked up the tab.

All of the emails, cards, messages, phone calls and comments mean the world to me—thank you for taking the time.

I’ll close with a quote about friendship that sort of says it all. The author is Jon Katz, who has written a lot of books about dogs (and as dogs are man’s best friend, Mr. Katz probably knows a thing or two about friendship):

I think if I’ve learned anything about friendship, it’s to hang in, stay connected, fight for them, and let them fight for you. Don’t walk away, don’t be distracted, don’t be too busy or tired, don’t take them for granted. Friends are part of the glue that holds life and faith together. Powerful stuff.

Sean

Sean, yet another INSPIRE friend, was diagnosed with lung cancer on the 23rd of December in 2009. Now 48, He divides his time between New York City and Westhampton. The father of two beautiful children, Sean realized he was gay after fifteen years of marriage. In Sean’s own words:  “I did not want to live a hypocritical life so I decided that my wife and I should split up. I wanted my children to know what it means to be true to oneself. My kids accept me for who I am.” 

Sean goes on to explain that in order for him to retain his medical benefits, he and his wife remain legally married. The kids spend equal amounts of time with both of their parents, who remain committed to an open, loving and supportive family. Says Sean, “Almost five years later we are still almost best friends. We talk about boys together and ask how we are each doing.

Sean goes on to say, “Living with cancer is very challenging but I can actually say these have been some of the best years of my life. Love is what got me through–I have an amazing beautiful partner who cared for me and my kids with exquisite kindness and a web of friends that held me up. I quit work and now focus on my family and me. I have become the parent I never was when I was working sometimes seven days a week. I planned weddings for a living. Each wedding’s budget was anywhere from 250k to 1.5 million. I have a little less money but who cares. Living life is more important. I live my life saying I had cancer and if and when it might come back I will deal with it. But for now I just do not have cancer anymore.” 

Sean has approached his cancer holistically, and he counsels others living with this disease to “Stay positive, reduce stress. Treat the mind as well as the body. I always say that my oncologist treated the body while my integrated oncologist treated my mind. When I was first diagnosed I did vibrational healing, meditation, tibetan bowls, chanting…and lots of walking per the advice of my super hero surgeon, J. Sonnett.

Finally, Sean offers this simple advice: “Enjoy life to the fullest and live everyday like it is your last.