I glimpsed my first lightning bugs/fireflies of the season last night. How magical are they? It’s easy to imagine a host of lantern bearing faeries in our backyard…
My scans were on Monday and I came this close to getting into a fistfight with a nurse. Kidding, of course; remember, I’m a pacifist and don’t wish to be accompanied by hospital security on my subsequent appointments.
I was, however, absolutely steamed. Generally the orders for my scans note that I forgo the oral contrast and that notation was missing. Anticipating confusion, I alerted the receptionist. Soon my name was called and a nurse attempted to give me two barium shakes. I explained (again) that I don’t take oral contrast and would she please contact either my oncologist or the nurse in charge of clinical trials to confirm this. She looked skeptical, but said she’d check. Twenty minutes passed, the very long line grew longer, and I began to worry that this confusion would bump me further and further back down the line. I again approached the desk, a phone call was made and the receptionist said “she’s bringing two shakes out for you now”. Sigh. Several minutes later a different nurse came out, bearing (you guessed it) two milkshakes.
I (carefully this time) repeated that I do not take contrast, and had not in fact taken contrast for well over a year. The nurse said that she had spoken to the radiologist who very much wanted me to drink the contrast (just drink the damn koolaid!).
But he didn’t order the scans, I said. He is the one who reads them, she countered, and then went on to explain how difficult it would be to obtain an accurate scan should I not drink the contrast.
As I don’t want to devote this entire blog to the ensuing argument, I will condense. She was stolid, but I was more stubborn yet. Back and forth we went, in the waiting room, in front of all the other patients. My own certainty, my experience (I am, after all, a frequent flyer), my pleas that she speak to not the radiologist, but rather my oncologist or the clinical trial nurse, were all ignored. I finally said that perhaps I just wouldn’t be having a scan on that particular day. She left the room, I made the phone call I had requested myself, and within minutes I was called for my scans; no oral contrast (no apology either, although I had fantasized that perhaps one might be offered).
When my clinical trial team agreed that I could skip the oral contrast (I still receive intravenous contrast), it was a small but important victory for me. Of all the potentially uncomfortable procedures that are part of my treatment for cancer, drinking those barium ‘milkshakes’ every two months was, well, certainly one of the most difficult for me to swallow. I have an incredibly strong gag reflex and it was just something I had come to dread.
Needless to say, I was not able to enter that soothing zone I prefer in preparation for a scan. Nonetheless, as I lay on the table I did my best to envision clean, clear lungs. And then Jemesii (who had joined me in Boston) and I went over to Newbury Street and had a martini. Calm restored.
On to other things. A bit more about ASCO. GRACE, Global Resource for Advancing Cancer Education, has an informative posting about Crizotinib by Dr. Jack West, who was in attendance at the conference. Click here for a link to his post.
And now, what about that title? Occasionally someone will ask what sustains me; what gives me strength and keeps me moving forward. I know that for a lot of people, the answer to that question would be their faith. Pas moi, my friends.
I am an atheist. As a child I went to Sunday School regularly and even had a plastic framed print of Jesus in my room (I thought he was cute). Around the age of ten or eleven, I really began to pay attention to the words of the sermons as well as the hymns, and asked a lot of questions. By my late teens I had decided that for me there was no God.
Some people have a rather dark view of atheism, and confuse the definition, disbelief in a deity, with a lack of belief in anything. Not true. I believe in many things. First and foremost, love. It goes without saying (but I love to say it!) that I love life. I also love love. And I believe in love. I feel that it’s one of the coolest tricks we humans can do. And talk about magic; perhaps it is the only thing in the universe (I may stand to be corrected by you physicists) that the more you give, the more you get.
So that is what sustains me. The love of life, my family and my friends. And, as I choose to believe that everyone is essentially good, I love all those people I’ve not met yet.
That has been one of the very best aspects of life and breath for me: through their comments, many people have joined hearts and hands, and by doing so a community has been created. A sustainable community of love, caring and understanding. That’s a beautiful thing.
Peter spreads some love around
life and breath: outliving lung cancer 
Love your posts. So happy I found your blog.
Thank you. I’m happy you found it as well. Linnea
Linnea, we share the same beliefs. I am the only person in my family who does not not call myself a Christian. I’m all for allowing people the space for their beliefs. I just sometimes wish it was reciprocated.
I’m sorry you had such an unpleasant experience with your scan. I’m glad you stuck to your guns but it’s unfortunate you had deal with that. I’m sending love and light your way and looking forward to hearing good news about the results.
Diane
Diane, I too am tolerant and open minded and wish all were. I know longer worry if it’s reciprocated (to take a page from an oft quoted book, I turn the other cheek).
Thanks for the good wishes; I hope for reassuring results. Linnea
Hey Linnea, Glad you avoided (1) the koolaid and (2) being escorted out by security… we’ll be scanning for news from the scans and sending love and good thoughts. Thanks for the links in the previous posting. And thanks for that picture of the robin’s eggs.
Cristina
Cristina, at one point the nurse said, “we are trying to make sure you have less radiation in your body” (scare tactics) and I pointed to the milkshakes and responded that I could appreciate that, but I was trying to make sure I had less barium in my body. She really spoke to me as a petulant child (and I felt I was acting in quite a civilized manner, something you and I both know that petulant children are most incapable of). Security might not have been the best pool for future friends.
And those eggs, glorious, no? Love you, Linnea
You bring back sweet memories of me and other kids catching fireflies in hot summer nights, we put them in jars and went to sleep with live lanterns.
Also memories of nurses, most are great but some…
I didn’t want to be constipated and make painful efforts after a hip replacement so before the operation I drank prune juice. Operated and immobilized in bed, hallucinating from my self administered opiates I called the nurse and said “I need to go poo, I may have diarrhoea”, she said “No, you don’t” and left.
Guest what happened? She returned with a mask over her face and a cleaning lady.
They help me to the toilet. I finished and flushed. Looking at the clean toilet she said “See, You did not have diarrhoea”!
After the last CT scan I started to bleed from the needle hole. This nurse said “I toll you to press on it” I said “I did” she said “You did not”. I said “I am on blood thinners” She said “Oh!”
Intravenous contrasts give me warm feelings. Cutting hedge technology should prescribe martinis to get clear scans.
For my wife was very hard to accept and understand my NSCLC diagnosis 5 years ago, at 67 I never smoked, my parents died after 90.
May be I have to pay for my sins now! Being a renegade catholic I don’t believe in after life, so I expected to get away. Married in City Hall, my daughters not baptised,
my father wanted to do it. I didn’t mind, for me was just water over their heads.
I do not have faith, I have hope and enjoy the Genesis history
http://comicsworthreading.com/2009/10/30/the-book-of-genesis-illustrated-by-r-crumb/
I requested support and counselling for my wife, is very good, every month we see a friendly and compassionate female doctor and we talk about problems in general, feelings, daughters, pain. For physical pain I can get opiates or marijuana if needed, we always hug and kiss.
Found and interesting article exploring the interface of cancer and psychiatry
http://www.cancernetwork.com/blog/display/article/10165/1578729?GUID=A23C8E05-73AC-483C-80FB-5F4CDFBBF717&rememberme=1
Guillermo, as always, you add another dimension to a post. The story of your contradictory nurses reminds me of my favorite response when told I am an atheist: “no you’re not!”
I read the R. Crumb review, it looks very interesting. I joke that Mad Magazine was my bible as a child (I certainly spent most of my childhood savings on that and candy). As for counseling, I can’t say enough about how much my own counselor (the thoracic social worker) has helped me on this journey. I agree with the gentleman in the article–it should be part and parcel of all cancer therapy. A hug and kiss to you and your wife, Linnea
You would think the people in the health profession would naturally be compassionate, helpful and in some way worthy of the position, but it doesn’t seem to work that way! Glad you persevered!
It’s quite amazing that you ended up on Blueberry Hill, where so many share your feelings on faith and religion. We are among them, and came to that realization while living on ‘the hill’? Is it the water??!!!
You remain in our thoughts and we continue to send our good feelings your way.
PS Love Peter’s shirt!
Pat & Will, when we moved to the hill, I couldn’t believe the number of like minded individuals–it felt like coming home. I’m sure the water simply reinforces all that…Linnea
We all need to be advocates for ourselves. On more occasions that I can count at this point, I have said “May I please speak to you supervisor”. Too much is at stake to do otherwise. I often reflect on the unfortunate people who for one reason or another cannot take a stand for themselves.
Evie, me too. There is nothing more frustrating than speaking to a person who just can’t seem to hear what you are saying, and sometimes that does mean you need to speak to someone else. I’ve come too far to let someone else tell me what is right for my body…Linnea
Dear Linnea, hope you have room in your bilingual blog, sorry if I opened a can of worms.
Having priorities right is very important.
I will forget cancer for a while. Now is FIFA World Cup time. Today Argentina won and England tied with USA.
We are happy and looking forward for the next World Cup in 4 years.
We must have hope.
I found in your link to Grace Dr West a great webinar by Dr Ross Camidge describing that patients with ALK mutation do not appear to do well with EGFR inhibitors like Iressa and Tarceva. Most are non smokers and have adenocarcinomas like me. My first treatment was Iressa with no changes in tumour so I was concerned not expecting much from Tarceva when my diplomatic oncologist repeated “we were running out of choices”, I knew that, but if Tarceva does not work I may be a mutant and Crizotinib is going to be available in more cancer centers can be my next choice.
Medicines and religions can kill us.
Ten years ago I was admitted to emergency with extreme arrhythmia and was kept 3 days in the cardiac section. I was prescribed VIOX for arthritis that latter killed patients and was removed from markets. Was a Saturday and I shared a room with an orthodox jew admitted 2 days before with a minor heart attack. I rented and started to watch TV and he said that he could not have TV because of the Sabbath, so I turned off. He invited me to go and see the main floor or buy something, I followed him in my gown 6 floors downstairs, we walked up 6 floor again because during Sabbath he could not use elevators. Our very good nurse was very concerned loosing 2 cardiac patients and finding out our climbing experience.
People make religions and make them complicated. Is anything about the Sabbath and having atomic bombs but not allowing neighbours to have them?
Religion for me was accidental, for thousand of years my ancestors Celts, Basques, Vikings had many gods, but worn after the crusades I inherited the original sin just because Eve was setup and tempted to chat and Adam and billions of innocent descendents are not allowed in paradise, clothes and fashions started but we have to put up with creations like cancer, and malaria mosquitoes after unneeded created talking serpents and forbidden fruit trees in the garden of Eden.
I found the Book of Genesis unreliable, also can not accept having beliefs depending on tribe, place and time of birthdates. Give me true facts.
My sister and I went to sunday mass with my father, one uncle was a republican catholic priest, forced to leave Spain he became a missionary in Latin America. Destroying old religions and civilizations Aztec, Mayan and Inca in the name of God, they imposed their beliefs, interestingly including the missionary position that restricted my young man atraction to forbiden fruits.
http://en.wikipedia.org/wiki/Missionary_position
Part of popular version of the national anthem during the Spanish Civil War. The lyrics reflects the dislike of Republican Spain for the church.
Si los curas y frailes supieran,
la paliza que les van a dar,
subirían al coro cantando:
“¡Libertad, libertad, libertad!”
Translation
If priests and monks knew;
the beating they’re going to receive,
they’d make a chorus and sing:
“Liberty, liberty, liberty!”
Latter I realized that my mother did not have faith, specially on the church. She didn’t go to mass, “had to cook lunch”…
I remember part of a lulu bay song that she singed to me:
La Lola tiene un chiquillo, y ese chiquillo de quien será?
no es del cura ni es del fraile, que es del alcalde de la ciudad.
Translation
Lola has a baby, wonder who the baby’s father is?
is not the priest nor is the friar, it is the city’s mayor.
Cancer cure by Franciscan monk.
If it does not work you must try again. pray for cure to your favourite saint, put his image upside down facing a wall until you are cured.
http://www.worldwideinvention.com/articles/details/166/Natural-cure-cancer-with-Aloe-Vera-.html
Guillermo, such a lullaby. Your Mom was teaching you the ways of the world at a tender age. Linnea
Thanks so much, once again, Linnea, for your comments. As a one year LC survivor myself, I am now at the point where I debate whether or not to continue immersing myself in the “pool” of info available, often preferring to bury my head in the sands of everyday life. But your blogs are the exception, and I open the links as soon as they arrive, finding your words always soothing while also thought-provoking. Indeed, you have inspired me to begin my own course of writing, though it won’t be tomorrow or the next day, but after a bit of thought.
And I initially decided to comment on your experience with the nurse. Here in Spain, National Health care nurses and doctors have kept me almost constantly indignant over the past year, although I rush to say that the care given me has obtained two NED scans, so I probably chouldn’t complain. But I do, while also recognizing that I never had to agonize over who would pay what. Hmmmm … maybe that will be my first serious consideration when I decide to write … the woes of being treated abroad while reading forums and blogs from the US.
Anyway, best of luck to you with your scans, Linnea, and power to the patient!!! Glad you dug in your heels over the barium!
Love and life, Susan
Susan, yea, on several counts. That you’ve reached a year (HUGE with sclc), NED two consecutive times, and that you shall start writing. I hope you will share…(maybe a guest blog?) Linnea
I still shake a little when I think about that nurse… grrr.
I love the wonderful conversation that is happening above with Guillermo… I always look for his comments now!!!
❤ jemesii
Linnea
I found the crizotinib trial after reading about the ASCO conference. My Mom is a cancer patient who we believe may qualify. Waiting for the admin work to get entered into the trial here in Michigan. Of course the ALK test is the main hurdle (hopefully). Any thoughts or advice you can share as she gets ready to (hopefully!) start on the crizotinib?
Great blog and good luck with your scan results.
Bill, I guess the first hurdle is definitely the positive ALK test–I would hate for you to get too excited before getting that result. After that, it really is pretty simple. Compared to any other therapy I’ve had, the side effects are few. Initially, liver enzymes may elevate, so it might be prudent to do what she can now to strengthen her liver (including avoiding alcohol–after several months on trial it was no longer an issue and I can enjoy wine or a cocktail now). So, good luck as you await the results and feel free to contact me with other questions. Linnea
Linnea Dear friend:
Your CT scan results are coming soon, I wish you lots of luck.
Got results today of my June 2nd scan, “No changes since the previous” on April 16th
that showed progression.
Got hugs and kisses from a nice canadian italian doctor, good results!.
Got “Ignore this scan, only 30 days on Tarceva, wait for next in July” from oncologist.
I am itchy waiting for more hugs and kisses.
Waiting for results I have to pass the time. Cancer talk is so deadly.
Thanks to my fans for their support. With a dozen we can start a new religion.
I do not work for six days and rest on the seventh. Goddesses welcome.
My first miracle will be to improve genes for immune system to stop cancers.
Believe in don’t know the origin, no promises of afterlife, reincarnation or heaven.
I promise you a rose garden, fertilized with our dust.
1st commandment “Thou should not take the name of Guillermo in vain”.
2nd commandment “Thou can print my image, the one with hair”. pray to Gravatar
I looked very mean in a bold, with hair is more life a prophet and can hide my horns.
3rd commandment ” Don’t worry, be happy. Take it easy. Carpe diem”.
Last commandment ” NO to Holly wars, we all must wear Peter’s love shirts”.
All routes lead to paradise? So many choices and every body is right…
I qualify to be your private prophet and lead you to a not promised Summerland.
I am the son of Jesus and Trinity plus, my basque father was Jesus, Jose, Maria, Sebastian.
We had no choice, we had to be catholics.
No choices originated in Spain with The crusades and The inquisition.
Around 1609, a witch-craze triggered a panic in the Basque regions of Spain. Gustav Henningsen (The Witches’ Advocate) documented the Inquisition’s work in brilliant detail. Eat your heart out Salem withes.
http://en.wikipedia.org/wiki/Basque_witch_trials (over 7000 cases examined)
Love, sustance abd Freedom now!
Great news Linnae!!!! So very happy for you!
Sorry to hear about the battle with the radiology staff. Having worked in the field for more than 30 years, I am sorry to say that since I’ve been diagnosed, I have been disappointed on many occasions by my own colleagues who just don’t get it. And yet it’s so simple: Rule number 1: Shut up and listen, really listen to what the patient is saying. And then listen to yourself, you’ll learn a lot about whether you are being helpful or not!
On another note, I had to chuckle when I read about the fireflies. I’ve been enjoying them for the past week, too. It brings back wonderful memories of staying up late and catching them in empty mayo jars, another timeless activity…
And I passed your greetings onto Dr. Lynch via the research nurse. I’ve been on crizotinib for a week with mild nausea as the only side effect thus far. Do you experience any of the visual changes that have been reported?
Enjoy your day, it’s another beauty here in CT.
Sharon
Sharon, I did experience (still do) the visual disturbances. It shook me up initially, but once I realized what was causing it, I adapted quite easily.
Thanks for the howdy to Tom–I’m sure he is like a ship passing in the night these days.
And yeah, back to the nurse, I just wanted her to listen. That was what was so very frustrating; that feeling of being ignored. But, I stood my ground.
So please keep me posted on your trial experience; I am thinking of you. Linnea