On Monday I pushed myself to swim forty lengths: the season is coming to a close. The next morning I met with Jen Logan (a fabulous nurse practitioner) and my oncologist, Dr. Alice Shaw. Alice had told me some weeks ago that my previous scan had been reassessed and the measurement for progression had come back at 12.8. Technically, this meant that if my upcoming scan showed only minimal progression, I could stay on LDK for at least one more cycle.
However, in the days since, there has been a noticeable decline in my sense of well being. I’ve continued to lose weight, and am often short of energy and breath both. Part of the problem is that I am once again anemic; the recent addition of an iron supplement has proved helpful. Yet I am also symptomatic in a way that is distressingly familiar; the ragged cough and crackling sound my lungs make when I recline are clear indicators that cancer is beginning to get the upper hand.
On Tuesday we discussed both options and timing. Alice feels that unless the next scan is absolutely unchanged (not a likely scenario) we will stop drug and schedule either a core or surgical biopsy. Although she would prefer that I get as much time out of this therapy as possible, there is nothing to be gained from waiting too long.
Tuesday night I experienced some serious diarrhea (personal defintion: seven or more episodes). Mindful of the potential impact on sodium levels, I pushed the gatorade. On Wednesday I felt rather punky, and by Thursday morning there was blood in my urine and a lot of discomfort: clearly a urinary tract infection. I paid a visit to my general practitioner and started on antibiotics. By the afternoon I was nauseous and running a fever just shy of 101.5. Fortunately by the following morning I was fever free, but it is obvious that my immune system is working overtime.
The photo at the top of the page was taken during ebb tide, on an early morning two Septembers ago. Minutes earlier, Sadie and I had watched the sun rise. Crouching close to the wet sand, it was as if I could feel the hum and throb of life itself.
Seven years ago this month, I had just concluded chemotherapy when Sadie and I had our first photo shoot. Bald, skinny and with the lobectomy scar a fresh pink slash across my back, I was battle scarred. I’d asked Sadie to take pictures because I wanted a record of what I had just been through, but I got more more from that one day than I could have imagined. The photos showed a strength I’d not known I had. And Sadie, a casual acquaintance before, would become one of my closest friends.
Last week I asked Sadie for another favor and in two days, I will bring the costumes and she her camera. The timing is just a coincidence, but I like the implicit sense of anniversary: something about September. The ebb, the flow.
Linnea, I am so sorry to hear about your symptoms being back. There are too few adequate words, once again, to express how i really feel about this. You are a dear friend, and I don’t like to hear that you are feeling more sick. I am keeping fingers crossed that treatment will buy time & options. I love the photo ❤ And can't wait to see your new photos ~ enjoy the shoot with Sadie. Your strength shines through. love you dearly, Lorraine
Love you Lorraine…
I can imagine how I’ll feel when I experience those, a mix of returning symptoms and new ones. It s###s. I sure am hoping a good biopsy sample can be snagged as soon as possible and, using it, a good next-treatment can be found.
BTW, that was another fine example of your excellent writing.
Craig, I can’t say I savor the process of getting sick again, but you and I both know I am in the best of hands. And thanks for the kind words.
What a beautiful photo, and I expect Sadie will take more of those treaures so you can share them with us.
Hope the biopsy leaves you with another viable treatment that gives you twice as much time as you got out of the LDK and with no side effects.
What a remarkable woman you are.
Cheryl, twice as much would be remarkable but in truth I am just hoping for a positive response…one more stone to step on. Thanks for being here and stay well.
Oh, my dear friend Linnea…
First of all, that is such a beautiful photo, and I’m glad to hear that the previous scan result was in fact not as bad as it was initially measured.
And, I now know why I didn’t hear from you after I sent you an email last week. I’m very sorry that you became so ill. As a cancer patient, we get nervous every time our body presents the slightest malfunction even if it may have nothing to do with the cancer and it is harder to deal with the emotion than the actual discomfort. I hope you are feeling better with the help of medication and rest. I’m praying for your quick recovery. Love, Yuki
P.S. looking forward to your new photos!
Yuki, you are so correct–the greatest challenge is not physical discomfort, it is quieting our minds. I have my moments, but I am managing to stay on top of it. I am glad Dr. Shaw is at the helm!
That is the most darling picture, Linnea. You have an impish grin. Just love it!
So sorry about your decline. Love you so very much. Looking forward to seeing you somewhat soon.
Carolyn, I look forward to our visit as well–when I have more details nailed down, we will plan it.
Gorgeous photo and anxiously await new ones. So sorry to hear of the recent symptoms and I have no words to adequately share how much I admire your strength. So love your writing, too. Amazing woman you are.
Thank you, on all counts.
So sorry to hear about your new symptoms. PRAYING! Blessings to you as you travel this journey!
Thank you Carol Ann!
lovely photo–beautiful !
I met Dr. Shaw for 1st time about 3 weeks ago. I flew in from Cleveland and my daughter took the train from NYC. We were both blown away by her intelligence,kindness and beauty. You are so fortunate to be in her care. She told me about your blog,since I am not in contact with anyone else on crizotinib. I have been on it for 2 years.( 3rd line of defense and several surgeries)Worst side effect is diarrhea.I pretty much stay away from eggs and chocolate. 7 episodes is a lot ! WOW–4-5 manageable. I live in fear that I will be somewhere where I can not get to bathroom in time.If I am traveling or before going out to dinner I take a lomotil and that usually works.I itch a lot–it does not seem like that is very common.Does anyone else have that problem?I also had blood in my urine and that turned out to be a metastasis
to bladder(easily treated with out- patient surgery). Has anyone else experienced that? Very rare ! Hopefully, yours is only a urinary track infection.
I have never responded to a blog before,am I out-of-line to ask questions of others on drug?
Best wishes,have my fingers crossed for you.
(note: everyone else can ignore this message. it’s not of general interest.)
FYI, there’s lots of us ALKies & ROS1ers on the Lung Cancer Survivors forum at http://www.inspire.com/groups/lung-cancer-survivors/ who take (or took) Xalkori. You can ask questions there all day long, and share your experiences with other newcomers. Look in particular for this long-running discussion (over 1000 messages, and that’s just the sequel to two prior ones):
Re: diarrhea, I became extremely lactose intolerant when starting Xaklori and there’s a little dairy (e.g., butter) in almost any restaurant or packaged food or even many breads, so I had a problem almost every time I went out to eat. My problem was probably self-imposed because I stopped eating dairy for a couple of months before; after a year of gradually upping daily “dairy challenges” (starting at 1/8 tsp of skim milk/day) I no longer have a significant problem with it. Until then, I tended to take 2-4 lactaid pills with meals that might be risky; at home I was just careful about what I ate. BTW, sauerkraut also gave me a problem, but not so much if I built up to it over a couple of days. It seems like my digestive system lost instant-adaptability, but could catch up if given extra time to get used to whatever it was.
Thank you.That will be very helpful. The Cleveland Clinic that is administrating the trial here will not give out names of other people on trial so it is very lonely ! It is wonderful that you know other people on trial.
Jane, for some reason I didn’t find your comment until yesterday, and once I approved it, couldn’t see where it had gone. My friend Craig, who is trying to post a response to you and can’t seem to get it to go through–we will work on that–is the only reason I located it (I actually searched all through my comments to see where it went–a mystery, I suppose.
Anyway, of course you can ask questions–and I’m sorry yours has now sat unanswered for days. Perhaps Craig will offer some insight, because I don’t know (about the bladder met). I experience intermittent itching on the drug I am on now (LDK378) and honestly without looking back, can’t recall if I did on crizotinib as well. Sometimes neuropathy takes funny forms…
Anyway, I am so glad you commented. Two years is great and I wish you the best of luck moving forward (and of course I agree with your assessment of Dr. Shaw).
Your blog is amazing. Thank you,Craig did respond and gave me helpful information. Good luck to you.
Beautiful photo of a most beautiful soul. I just asked a friend for a photo shoot with my Mister. I am sorry that anyone has this darn disease. Sending all my love on the wings of a desert sparrow, Deborah
Deborah, I hope your photo session is a fun one—and I’ll happily take that desert sparrow love.
We have never met personally but I find myself riding your ups and downs and rooting for you. You help me so much in my own path and provide so many insights for me. So, as I experience the ebbs and flows, I send my prayers that you are feeling the ebbs and flows of life and continue to ride with the tide. Thank you for helping us all to feel that we are all swimming together in the same sea, and how wonderful it all is.
My own image is that we are scaling a wall, and sometimes, some of us are in a place with secure footing, and when we are there, we help those of us who are struggling to climb. And when we are struggling to climb, we accept the help from those who need it.
Sending love to you.
Marie, I like your powerful image. It really, really helps to know that we are not alone.
Linnea. Clearly your friend is dear, she knows how to capture your strength and beauty. You made such an impact on my path so long ago. I can clearly feel the moment I first saw your drawing on the walls at CSU and I said to myself “If I can work with people like her (you), I want to be here!” You are still impacting so many people with your talents. I am thinking about you a lot and hoping that you receive the news you want to hear soon. Love Lynn
Lynn, it is so good to hear your ‘voice’. Trust me, the admiration was mutual–I have always been awed and inspired by you and your art.
I am glad about one thing, which is that Sadie will be taking more pictures and that you will have that commemoration and ceremony. You are very good at showing us how important those are in remaining mindful of life, in its all its ebb and flow. You are carrying so may of us along on your own powerful wave, Linnea.
Don’t want to flog this metaphor too much (and you know I could!). Hoping you are feeling better and that you and Alice (Dr. Shaw) can get going on the next treatment. Love, Cristina
Ah Miss Cris, we must sometimes ride on ceremony. Flog away–I love it when you do that!!
Thinking of you today as I read your post with great concern and sadness. You were so kind and present to Mateo and me when we were going through Sara’s ordeal. I am comforted knowing that you are in good hands and wish for the best possible outcome.
Pam, thank you, your kind words mean much to me. Although I am cognizant of all the possibilities, I remain very hopeful.
You are in my thoughts, especially when I’m walking the trails with Finnigan.
Nature is so beautiful and resilient as are you.
Kathleen, I miss those trails and running into you as well. Thank you.
I am so happy to see your post with the beautiful picture. I know you and Dr Shaw will come up with the next treatment plan when it is needed. Take care my friend as I admire your strength and out look in live to deal with this LC. Love, Joan.
Thank you Joan. Dr. Shaw has a few tricks up her sleeve yet.
Hi Linnea- I am sorry to be chiming in a bit late. It was hard to read these latest developments. I am with you.
Thank you Joan.