Yesterday was a humdinger. Two treatment-related mistakes in, I realized that not only am I over-overwhelmed, it’s time to do the big ask: Help!
Shortly after after posting my previous blog (and following much back and forth), Dr. Shaw and I decided that canceling my mediation was not a good idea. The prospect of getting three lawyers to readjust their schedules just felt too daunting. And, until we reach a settlement, I am still completely dependent upon David financially and that is not where I want to be.
Alice (Dr. Shaw) very kindly opined that medically it would be okay to wait a week. I emailed back that I would then delay wash-out and continue taking my Xalkori for one more week. This was her adorable response:
Yes. Twice per day! 🙂
Well, evidently I overdid it by one pill, and because of that the trial start date could be delayed (really?). That was mistake number one. The second screw-up was getting confused as to the time of a scheduled MRI and arriving fifty minutes late. They graciously squeezed me in but it easily could have meant another trip/potential delay.
So let me describe my little day from hell. I was up at 6:30 am with the intention of getting on the road by 7:30 for a 9:30 am dermatology appointment. A mere 24 hours earlier I had been looking at my left shin with my glasses on. I have very long legs and increasingly poor eyesight and if my glasses aren’t on, anything below the knees is blurry. Well, there’s a mole mid-shin that a dermatologist at MGH has been watching, and what I saw when I looked closely was concerning—particularly the numerous small black spots that now peppered the surface of this little ‘beauty spot’. I had a basal cell cancer removed at the age of thirty and my father Ollie had numerous basal and squamous cell cancers as well as melanoma. My chart must have me ID’d as high risk, because when I called for an appointment they marked it urgent and got me in yesterday.
Anyway, that’s the back story. I got on the road by 7:45 and realized I had missed Peter’s 7:20 wake-up call. Placed that–we’re getting this routine down, and as silly as it may seem, I love speaking to him briefly each day. And then I settled into what is always a horrific commute. What can take half an hour turned into and hour and a half. I got to dermatology just before my appointment. Fifty minutes and five magazines later I asked the receptionist if I’d be seen soon—as I had more appointments over at Yawkey starting at 11 am. Oh dear. Seems she forgot to let them know I was there…she was very apologetic and I was seen shortly thereafter but it was some additional stress I could have done without.
Anyway, one look at the mole and the dermatologist said ‘biopsy it’. His feeling was that it represented a basal cell, but given the pigmentation and appearance, melanoma could not be ruled out until the pathology report came back.
I had a punch biopsy performed and I will hear the result in seven to ten days. As the doctor said (a wee bit too glibly, I felt). ‘You don’t want to hear back from me.’ If a nurse calls, I will know it is reassuring news. If it’s the doctor, do you think hanging up would make it go away?
I had to practically run back to the Yawkey building (a challenge at this point) as an Echocardiogram was scheduled for 11 am. I was ten minutes late and breathless to boot, but the test proceeded anyway. Evidently I shall have these periodically during the upcoming trial, as there have been some (asymptomatic) reports of prolonged QT interval.
After that, it was labs and an EKG on Yawkey 7B. I spoke to the trial nurse and my scheduler, and ended up with just enough time for lunch before I had to begin fasting for my pre-trial abdominal CT scan. I enjoyed my rushed meal but for dessert I had a brain fart—thinking I had time to sit in the MGH cafe and browse on my laptop before heading over to Chelsea where the scans were scheduled. Oops. At 3:20 I realized my brain MRI was supposed to occur at 3:15. I placed an apologetic phone call and did my best to rush over—something that is impossible at that time of day. Forty five minutes later I arrived at Imaging in Chelsea and (because sometimes you do what you have to do), drank one of those hideous barium shakes. I did beg off the second one.
Well, it looked as if my MRI would need to be rescheduled, but bless their hearts, they squeezed me in. It was almost 7 pm when I left. Exhausted.
So here’s the ask. I’m an independent sort by nature and a good deal of my journey with cancer has been rather solitary. Sometimes that has sucked but mostly I have managed (got my own back sort of thing). However, I confess to harboring a small amount of envy for those cancer patients who have a lot of support. Medically I’ve got the best squad a girl could ask for but I’m thinking I could use a little…Team Linnea. Family/friends/folks who might be willing to go to appointments with me. I’ve got some long ones coming up as I start the trial and it is always easier with company.
As soon as it is finalized, I am going to publish my schedule. If you’d like to spend a day in the life of a patient in a phase I clinical trial, don’t be shy! All comers welcome!
And while you’re at it, please cross your fingers that the skin biopsy comes back benign (best) or basal cell (better than the alternative). I don’t need any more wrenches thrown into this affair. My son August sent me this e-card, which nicely sums up my current sentiment:
Linnea dearest — send us the dates! And we’ll provide the company!!! xoxoxo m
I am feeling you well. I understand. I will send all energy toward your situation and think of you reach day. If you schedule any tests in Texas,I am your wing man!
Best regards. I am in DC at the REV Forum.
I am too far away in California to be with you physically. But I promise to pray for you during each appointment. Just publish your schedule and I will be with you spiritually.
if that gigantic pond wasn’t in the way, I would hang out with you anytime and as much as I could! I would then enjoy the company of the fabulous YOU, and at the same time learn first-hand from the expert in preparation for my sooner or later upcoming Phase-I-trial.
I’m so glad you are asking for help and support, even if I can only provide my mental presence. I’m sorry I’ve been a lousy communicator lately, but you are still always on my mind.
Lots of love and the strong hugs for you!
I send lots of moral support from California. Wish I were closer so I could help out in person.
any time my friend…..any time! xoxo
You don’t know me, but I’ve been following your journey for a while. It was your Marfa trips that created the bond (my son worked for the Chinati Foundation there, we’ve visited, and I was truly stuck to you…). There are many more confluences – I’m a 50 somethin’ artist, have lived in artist live/work space etc. Here’s the deal: I live in Melrose which is halfway between you and Dana Farber/Mass General. I work for myself and have the luxury of time and space. I would be honored to pick you up, drive you there, whatever. You’d like me. I already like you. Contacts: email: email@example.com. Phone: 781-665-6804. Can I call you?
I am catching up on comments—and I love yours. I sent your contact info to myself in an email (heading: new friend). And yes, I would love this! Will contact you later today or tomorrow. Thank you!
Dear Linnea it is not weak to ask for help. Many of us who are independent souls find it very difficult. I am glad you have some offers and if I lived closer to you I would be one of the willing. I hope the nurse phones you!
Beryl, I am soooo far behind in answering my comments but it is always a treat to ‘hear’ your voice. And I know you would.
If could be in Boston with you and for you, I’d do it in a heartbeat. Alas, Seattle is not within reasonable driving distance. I will instead send you continuing good vibes and offer an ear via Internet or phone. Hugs and (as Craig says) best hopes.
Janet, the round trip would be hell. But girl, one of these days we will be in the same place at the same time.
Linnea, I would be honored to be part of your team. You may prefer to be with those you have actually met (!) but if I could be of help, I would love to do so. I’m in southern NH so very reasonable for me to help out. So glad you are enlisting your fans! Please know my offer is sincere.
Nah, I feel like I know you and I do know your offer is sincere. I am too disorganized still to get up a schedule, but I’m working on it. I would love to meet up!
Dearest Linnea, I think this is such a smart idea! You are so right to ask for help, and people who can join Team Linnea will do so happily and willingly and I envy them! I only wish we were close enough to be able to schlep you around some, and keep you company. Don’t forget to let us know the results of the biopsy, okay? Fingers way crossed. xoxoxo
Cristina, thank you. And thank you for the dear little card and generous enclosure (and W for her poem). Love you both a ton…
Linnea I am so glad you are reaching out and building a team to complement your wonderful MGH team. I am not sure how far you live from me now, and I am working during the week, but if there is any way I can be part of your team with phone calls or other things needed that I could do outside of work please let me know. love you my friend
Lorraine, I’m hoping we can set up something just cuz I miss you! We’ll work on it, ok?
If I were in Boston I would be happy to join you! However, I will have to settle for being part of your virtual team. Keep going, you can do this!
Tori, virtual works as well!
Capetonian hoping to read that you have a lovely team assembled and fighting with you!
Thank you for the good wishes!
Let me know how I can help-I know the landscape!
Pam, you are so sweet and I know you do. I promise not to be shy…(and I’d love to meet you anyway).
I found your blog a few months ago when my boyfriend was diagnosed with stage IV lung cancer as well. We are in NY, but were at MGH for a short time expecting to be a part of a phase 1 trial that didn’t pan out. If we find ourselves Boston bound again to see Dr. Sequist, I’d happily join Team Linnea!
Thanks you and best of luck to your boyfriend. If you find yourselves in Boston again, let me know and maybe we can at least meet up for lunch!
Definitely call on me – any time – I know how important having support is…I always go with friends (after being alone one time with a scary scan result)
Thank you Laurie–it means a lot to me.
There is a great website that you should consider (lotsahelpinghands.com). This will help you to post appointments and to organize help. I used it myself and it made a huge difference.
Thank you Martin. I am still learning of untapped resources!
Linnea- I will be in Boston Jun 9-12, can be available to you in the late afternoon/evenings. Let me know.
💜 In March my best friend and the physician I have been her nurse for 18 years for, was diagnosed with stage 4 nsclc ,ALK pos. I have essentially moved in with her, taken a leave of absence from work I take her to every appointment and do IV fluids and treatments , meds and keep up with all the info. There is no way she could do this at this point. I am in aw of you doing this alone. I can not imagine not having someone to go with you. I truly hope someone does.
Stacey, what a good and loyal friend you are. Fortunately I have had hands-on help at some of the worst times although I am working on a little more consistency per my support system. Lots of people care but unless you ask, they don’t know what you may be lacking or in need of. I’m learning (the ask). Best of luck to you and your friend.
First want to wish you a Happy Mother’s Day! I think and pray for you so often. I am honored that my husband, Rob, and I had the chance to meet you in Santa Monica. You have such a wonderful positive spirit. I am glad that you are asking for company on your trips. You shouldn’t do this alone. I am with you in spirit and will continually pray all goes well.
Thank you Carol—and a very belated Happy Mother’s Day to you as well! Santa Monica was a special experience and as always, meeting others on this journey was the best part.
Linnea, I’m in Australia visiting our daughter, but will return in late June. This trip has been a much needed reprieve for me and I’m sending you the positive grace that I’m feeling. Steve would have loved this trip, the wide open spaces and gentle hills are his kind of environment. Yesterday Courtney and I had lunch at a mountaintop winery overlooking the sea 30 miles away…Amazing, can you picture it? I hope so? You’ve been in my daily prayers since we first found your blog.
I won’t be close enough to you to drop in for a day, but do consider my offer to come for a week or so and help. I’m an old hand at appointments, a good cook, a super housemaid and driver. I am seriously offering, I’d be honored to be part of Team Linnea. Stand Strong but lean on friends Lady. Hedy
Oh Hedy—I am just getting around to comments and your’s touches me so.I hope you had a wonderful visit in Australia (yes, I can picture that view!) I’m sorry Steve couldn’t join you (but maybe he did!) and I will seriously consider your offer. Bless you…
Thinking of you over here in Australia. Hang in there Linnea….you give everyone hope and without hope in our lives we have nothing. Richelle xx
Thanks Richelle. And sorry I have been so slow on responding. Here’s to hope—and a friend Down Under.
My cancer diagnosis and treatment in 2005 is almost identical to yours with the exception of mine just returning in December of 2013. I currently live in Virginia Beach and am blessed to live with my very supportive family. In January, I met with Dr. Lisa Sequist from MGH to possibly participate in clinical trials for immunotherapy treatments. While found not eligible for that particular trial, it was discovered that I, too, have the ALK gene mutation and am now taking Xalkori. Even though I haven’t had a scan yet, I feel so much better and my breathing has significantly improved…virtually no more shortness of breath. I discovered you through reading your testimonial from the MGH website and wanted you to know that you are my inspiration! I printed your testimonial and keep it in my “healing” book. When I am experiencing self doubt about healing…I always refer back to your testimonial to regain the strength and faith to live a life filled with health and vitality. After researching your name, I just now found your blog and plan to follow it from this date forward. I wish you much love, strength, and courage as you continue your treatments…and continue to inspire those who have found you and love you! You are in my daily prayers.
Thank you Deborah! I am glad you are here at MGH—the thoracic team is wonderful (I’m very fond of Lecia). And if you have an ALK mutation, there is no better place to be.
I think the fact that you already feel so much better is an incredible sign. I certainly know if I am responding or not long before the scan. Best of luck to you, and maybe one of these days we shall meet!
Yes, I would very much like to meet you someday…and experience your incredible spirit in person! Good luck to you as well ; )
Dear Dear Linnea, I wish wish I could
spend more time with you as you progress through your trial. I have thought much of you since we met on on February 25th at at Mgh for the few minutes to chat before or between appointments. your words of encouragement have meantime a lot to to Jim and family. i will continue to keep you in my thoughts and prayers