The Cancer Is In My Lungs

I am sorry to share this news.  I’m sorry for myself and my family, but I’m also sorry for those of you who read this blog and draw inspiration and hope from me.  The latest news is horrifying, shocking, devastating, and is anything but inspiring and hopeful.  I feel so defeated and destroyed, so incapable of doing anything right now but going through the motions like a robot, in between bouts of racking sobs.  I have about 20 2-4 millimeter spots — also known as nodules — in my lungs.  We are fairly certain they are cancer.  If they are indeed cancer, then I am no longer curable, and my prognosis according to my oncologist is, assuming I respond to chemo,  “several years.”  That is the long and short of it.

I went in for my monthly CEA test on Wednesday (two days after determining that I am not allergic to Celebrex).  It was 5.6, showing a drastic jump of 2.4 points in a month.  I had a feeling of trepidation.  I went in to see my oncologist Thursday morning and he immediately ordered a brain MRI and a CT scan. I wanted a brain scan because I’ve been having headaches lately and I never used to get headaches.  Colon cancer rarely goes to the brain, and even more rarely goes there at this stage.  But my oncologist indulged me.  Thankfully, my brain MRI came back clean  Initially, Dr. A.C. wanted to do a PET scan, but I had eaten too recently to have a PET that same day so I said why don’t we do a CT instead.

I had a feeling something was up with my lungs, not because I have any symptoms, but because they haven’t been scanned in six months. (Of course, I had a feeling something was up with pretty much every part of my body because that’s what it’s like to live with metastatic cancer.)  While I had a scan in October, it was a pelvic and abdominal MRI because the insurance company refused to approve a PET and Dr. A.C. said a pelvic and abdominal MRI would be just as good.  Apparently, MRI technology doesn’t work on the lungs.  But Dr. A.C. felt okay about skipping the lungs because it is unusual for colon cancer to bypass the liver and go directly to the lungs.  The exploratory surgery I had on Halloween was limited to the abdominal cavity so the surgeon got a clean look at the liver and everything below that; he would not have seen my lungs.  In any case, these mets are inside the lung and would not have been viewable during any kind of exploratory surgery.

Initially, I was angry at the insurance company for not approving the PET in October.  Dr. A.C. said he doubts a PET would have revealed the spots because they are so small (and therefore not generating enough metabolic activity to light up on a PET scan).  In this case, I’m grateful that I asked for a CT scan because I didn’t want to wait another day for a PET scan.  I’m grateful, I see an oncologist who believes in monthly CEA testing; most oncologists opt for 3 or even 6 month testing for Stage IV patients while they have no evidence of disease.  I’m grateful I have an oncologist who is so responsive and ordered scans the same day.  I know many CRC patients who would have had to wait until next week for scans or whose oncologists would have just adopted a wait-and-see approach to observe the CEA trend.

We have no confirmation that the things are cancer.  They’re too small for needle biopsies.  If I wanted biopsies, it would have to be done through surgery (i.e. a surgeon cracking my chest open to obtain a biopsy).  That seems a rather drastic move and the costs would very likely outweigh the benefits.  There are too many and they are too diffuse in both lungs for any kind of resection or radiation.  Dr. A.C. is going to present my case to the lung tumor board on Tuesday morning for the board’s opinion about biopsies. Without actual confirmation, how can we be certain? We can’t. It’s a guess based on my elevated CEA and that those spots weren’t there in previous scans. Of course, I’ve not had a CT scan since right after my hemicolectomy at UCLA and no one has gone back to look at those images. The CT scan also shows that my right ovary is enlarged, which could also be indicative of metastatic disease.

In light of the spots in the lungs and an unusual ovary presentation, the best course of treatment — the only course of treatment — is chemo.  He want to restart me on Folfox, the first regimen I was on and to which I developed an allergic reaction during the last infusion.  Therefore, I will need to go through a desensitization process, involving premeds the day before and a long day of infusion the day of as they give me the oxaliplatin in a slow, slow drip.  Dr. A.C. will consult with a couple of well-known GI oncologists, including Dr. Marshall (who spoke at my fundraiser), to see if they have a different view about the right chemo regimen. I doubt it’s worthwhile for me at this point to go get a formal second opinion.

No one came with me to see Dr. A.C. yesterday afternoon.  I went alone and received the news alone.  I asked the questions that I have never asked.  Am I no longer curable?  If these spots are cancer, then you are no longer curable.  What is my prognosis?  Several years. Being alone was probably for the best as it allowed me time to cry alone. The thought of leaving my children and husband is unbearably painful. How will they go on without me? Who will pay the bills? Who will go to Costco to buy everything they need? Who will cook for them? Who will take the kids to school? Who will make their school lunches? Even as I think about going back on Folfox and enduring the horrible neuropathy, I have similar questions about who and how I and my family will get through the days, weeks, months and years to come. And my parents…the thought of them watching me die breaks my heart anew. My sister told me she felt like we were back at square one. No, I told her, it’s worse than square one because now it’s in my lungs and I’ve already tried chemo regimens that haven’t seemed to be that effective. In addition to having already tried the two leading chemotherapy treatments for colorectal cancer, I am tired now, so tired of fighting, so tired of having any kind of hope and being painfully disappointed. I am so so tired.

My instinct is to plan. I need to record for Josh how all our bills are paid every month so he will always keep the appropriate accounts funded. I need to figure out who is going to help raise my children, to make sure they take piano and swimming lessons, to make sure they learn to eat foods from all over the world, to keep the fridge and pantry stocked with the foods my husband and children love. I need to make memory books for the girls. I need to tell people how much I love them and the kind of impact they’ve had on my life. I need to extract promises from people to help look after my girls when I’m gone and for those who knew me best to tell my girls about me, to fill their ears with stories of me throughout all the phases of my life; I need those people to share with Mia and Isabelle what mattered to me most and the Chinese-rooted values that I hope my girls will learn. I need to take Josh and our girls to Disney World and the Galapagos Islands so we can walk among hundred-year-old tortoises. I need to make a caramel soufflé like the heavenly one I ate with Josh in Paris last February. I need to scratch Josh’s head just the way he likes it and to snuggle with my girls as much as I can. There is so much I need to do.

And lastly, I need to write. In writing, I find peace and solace. In writing, I know I will leave one of my greatest legacies. There is so much more I want to share with you, so much more I want to tell you about me and the lessons I have learned in this singular life of mine.

I know that soon I will regain my footing and I will get up and fight, that I will research and advocate for myself, that I will endure the treatments. But I also know that in order for me to fight and to otherwise suck the marrow out of what remains of my life, I need to feel like I’m planning for what is an inevitability. I must do all the things I have outlined above. Josh has made me promise to fight, that I will not give up; he still clings to hope. I must admit that my hope is a dim flame at this point, that the most I can hope for now is time. In order for me to keep my promise to Josh, I need your help. I need those around me to be hopeful, not falsely so. I need those around me to believe in the best possible outcome within the realm of likely outcomes. I need prayers and thoughts and good energy. I need you to cheer me on from the sidelines as I run this race. I need you if you dare to dawn the armor and join me in battle, to sit by me at chemo, to text, to call, to send emails, to come be with me, to take walks with me, to make me healthy juices, to cook the occasional dinner, to give me a hug, to grieve and cry with me, to help me think about a future that does not include me.  Thank you for all your love and support.

[What I really need is a cure.  Immunotherapy was deemed the scientific breakthrough of the year by Science magazine.  It has indeed proved effective in treating other cancers, just not colorectal cancer — yet.  During this holiday season, please consider making a donation to my research fund, however small.]

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37 Comments (+add yours?)

  1. Andie
    Dec 20, 2014 @ 13:13:28

    Well shit. Fighting for you from Nebraska.

    Reply

  2. Kathy
    Dec 20, 2014 @ 13:20:00

    Tears from a stranger in Calgary. I’m so sorry to read this horrible update. Sending prayers and hope for you.

    Reply

  3. Cirincione, Norma F.
    Dec 20, 2014 @ 13:31:58

    Julie, dear,

    There is nothing I can say other than that you, Josh and the girls are with me everyday. I send you all my love and remain at your disposal for any and everything.

    Norma

    Reply

  4. Tyler
    Dec 20, 2014 @ 14:39:12

    Julie, David and I are behind you all. I still think that you will clobber every single cancer cell. You will continue to mother, wife, shop at Costco and write for you and all of us.

    Reply

  5. jodi
    Dec 20, 2014 @ 14:47:18

    Julie,
    Although I only know you through your blog, I feel you write what i, myself feel and am going through. I also have stage IV that has gone into my lungs and bypassed my liver. I am about to start stivarga this next week because my lung nodules grew while on the avastin treatment. This will be my fourth round and I’m honestly scared for the first real time. I have four daughters. One getting married in march, one in college, and two in high school. I am only 40 and my heart breaks knowing there is a very real chance I will not see three graduations or be able to hold a first grandchild. I, too, am a planner and worry about my family being able to continue without me. My heart and prayers are with you as this new battle unfolds. All we can control is our attitude and how we show those in our lives just how much we love them. You are in my thoughts.

    Reply

  6. georgiamama
    Dec 20, 2014 @ 15:00:47

    Pulling out the pom-poms and shining up the armor so both will be at the ready. I wish I lived closer so I could put my juicer to good use. Sending lots of love to you and yours this holiday season.

    Reply

  7. Stephen Savage-Estrada
    Dec 20, 2014 @ 15:06:38

    Hi Julie…

    We’ve never chatted, but I’ve “seen” you around Colontown. I’m stage 4 as well, at age 28.

    You are so loved by strangers around the world….if anyone can pull this off…it’s you. I know your fear…I know how it feels to see the future without you in it. It’s all so much to handle. But YOU have strength inside that even you aren’t aware of yet.

    Take your time to mourn. It’s your right. Then, get up, face the world, and let’s do this. Every morning, from this day on, I will wake up and pray for you. For us. Thank you for sharing your pain….you may feel weak…but sharing shows how strong you really are.

    Reply

  8. Bill Ide
    Dec 20, 2014 @ 15:09:43

    Your writing and spirit have and will continue to lift all of our hearts. You are making a big difference and have the cheers pulling for you.

    Reply

  9. Chris S
    Dec 20, 2014 @ 15:56:42

    I’m sorry to hear the bad news. By all means regroup and fight. My strategy with my onc is to keep me as healthy as possible for as long as possible. I would suggest that is a good path for those of us who are “incurable”, and that offers the best chance for a miraculous recovery. But mostly keep time to do all those wonderful things with those you love – the things you mentioned in your post and things you didn’t. Filling all your hours fighting our disease just to win more time to fight cancer leaves little time for those important things in life. Finding peace and acceptance, which does not mean resignation, may help a great deal.

    I hope to see you soon, maybe dinner tonight or lunch soon.

    Reply

  10. Domitilla
    Dec 20, 2014 @ 16:27:03

    I still believe you can beat the beast. You are a fighter, dear. You got the best reasons in the world to keep fighting. You got a loving family – husband and girls. Your parents and siblings. They all love you deeply. And then you got us, the blog people. We love you deeply, Julie, as well. Because your fight is ours. Don’t give up, Julie dear, please don’t give up. You are not fighting for you alone, you are fighting for us as well.
    Love and prayers from Italy,
    Domitilla

    Reply

  11. Leta Withers
    Dec 20, 2014 @ 17:26:32

    It’s a friend from colontown here. Your writing is amazing and you put into words so much of what I feel inside as well. I just could never write it as eloquently as you do. I hate this news. Cancer sucks. I hope you feel the love and support from your fellow colon townies. We are here for you. You definitely need to take the time to process this and grieve, but you are still in the fight. You are young and strong. Surround yourself with successful outcomes. There are a lot of positive ones out there. Hugs to you and your family. Hang in there.

    Reply

  12. Nesli
    Dec 20, 2014 @ 17:44:25

    Oh Julie. While I am devastated to have read this update, I know that you will pull through with finesse and grace. Your blog is an incredible gift and I find such solace and strength in your words and writing — for that, I thank you. You, Josh, Bella and Mia are in my thoughts and prayers.

    Reply

  13. steph20021
    Dec 20, 2014 @ 17:48:38

    We need a cure in our lifetime. Full stop. And we wont stop fighting for anything short of that. Im going through this alongside you.
    Sending love from Toronto!
    -33 yr old mCRC with mets to liver and remaining ovary

    Reply

  14. Maia
    Dec 20, 2014 @ 18:06:02

    Wolchok’s article in Nature, this past 27 november (my “bookshelf”: https://drive.google.com/file/d/0B9Eo84kGLvX0c3dIU0FjU21ZMk0/view?usp=sharing ) Immunotherapy is almost here. Hang in there, go to SCCA. Not impressed with the people in your backyard (even if Wolchok is there). In Nature, about anti PD-1: p. 30 of pdf/ p.496-498 of actual magazine. See letters in pages p.558, p.563, p.568, p.572 & p.577
    Hang in there, dear Julie. Being realistic, you have a lot to do, still : )

    Reply

  15. Nilene Evans
    Dec 20, 2014 @ 20:42:07

    Dear Julie, I am one who knows you only from your blogs. I am so very sorry for your news. Friends and readers alike support and pray for you, Josh and your girls. “Several years” is a long time – I hope they find a cure by then. Nilene

    Reply

  16. Kit Grady
    Dec 20, 2014 @ 21:31:15

    This breaks my heart, Julie. I send hugs and prayers. Regroup, take a break and keep fighting. The others and I are with you.

    Reply

  17. Joanne LaGrega
    Dec 20, 2014 @ 21:43:03

    Julie Dear,

    You, Josh and the girls are in my prayers, everyday. I am a 36 year cancer survivor, hoping and praying you will be too. You are an amazing woman, never stop fighting.

    Joanne

    Reply

  18. Barbara Gettelman
    Dec 20, 2014 @ 21:48:50

    Many years is my hope. Please know I am thinking about your and “praying” for you. You have changed my life.

    Reply

  19. Jeanine
    Dec 20, 2014 @ 22:01:23

    I’m so sorry to read this. I hate the words in the subject line. But you will persevere?, Julie. Please try and think positive. I pray the chemo will wipe out all traces in the lungs. Keeping you in my prayers and your family. Xoxo

    Reply

  20. Cristina
    Dec 20, 2014 @ 22:47:31

    Dear Julie, I just started reading your blog two days ago. I was so hopeful that you were “cured”. I have stage IV colon cancer and two weeks ago I found out it is also in my lungs. You are a beautiful soul and I hope for the two of us, that there is a cure out there soon, in our lifetime. Let’s plan for the worst, but let’s hope for the best. Please keep writing. You are an inspiration. I will keep you and your family in my thoughs and prayers..

    Reply

  21. Katie
    Dec 20, 2014 @ 23:16:59

    I am devastated to read this. I am morning with you. I should know what to say, but I don’t. I will get in touch soon, maybe we can talk on the phone.

    Reply

  22. Maxine
    Dec 20, 2014 @ 23:41:11

    My dear friend Julie: Last week I saw the movie the Theory of Everything where Stephen Hawking was told at 21 that he had two years to live with ALS. He is now 72 years old and has led a remarkable life. I pray with all my heart and soul that you will forge ahead and beat this damn cancer!

    Reply

  23. Mirna
    Dec 21, 2014 @ 07:07:57

    Dear Julie! I cant even imagine how you and Josh feel right now. All I can say is that I am thinking of you and your Family. If there is a chance, then i truly believe that you can make it. Lots of Love from Austria

    Reply

  24. Barbara Buchman
    Dec 21, 2014 @ 12:00:38

    So sorry to hear about the return of a possible lung cancer. I only know you through your blog which was recommended to me by my cousin who worked with you at Cleary. I wish you all the courage you can muster to fight this. I have heard of several people receiving catastrophic prognosis but have won against the odds.
    i look forward to following your continued blog.

    Reply

  25. Helen
    Dec 22, 2014 @ 10:36:09

    Dear Julie, I have been trying to think of something profound to say, but I can’t. Your recent update has left me reeling. Sad, scared, angry – a gamut of emotions for you and your lovely family (and for all us warriors) tumble through my cotton wool chemo brain! You might not feel it now, but you are STRONG and COURAGEOUS – and you will do everything you can possibly do to beat this ~ as I am so fond of saying ~~ FUCK YOU cancer……….

    Reply

  26. Matthew
    Dec 22, 2014 @ 14:01:38

    Julie:

    I am so sorry about the recent turn of events in your battle with this terrible disease. I have come here since my dad’s stage IV diagnosis and your words have given me the strength to help him fight on. I hope that you too can find the strength to keep fighting on.

    I will be keeping you in my thoughts.

    All the best,
    Matt from NYC

    Reply

  27. The Astonishing FartMan
    Dec 22, 2014 @ 15:25:05

    Julie, I am so sorry you are having to go through this. Please remember, you are loved, you are not alone, and you are a blessing to every life you touch.

    Reply

  28. Diana
    Dec 22, 2014 @ 20:47:33

    Dear Julie, I am ready to walk this walk with you. Love, Diana

    Reply

  29. The Astonishing FartMan
    Dec 22, 2014 @ 23:39:33

    On the practical side, for when you are ready to dive back into such things:

    You mentioned “enduring the horrible neuropathy” caused (mostly) by the oxaliplatin in FOLFOX. I got oxy for only the first five or six of my twelve cycles of chemo, and my last oxy dose was in November 2010. Four years later, yes, I’m still alive, but have permanent painful CIPN (chemotherapy induced peripheral neuropathy) that messes with my life everyday.

    My investigations of oxy, including anecdoctal conversations with fellow patients, lead me to believe that the benefit of oxy has been much overstated while oxy’s neuropathy side effect is under-reported both in frequency and severity.

    See this link:

    http://www.ncbi.nlm.nih.gov/pubmed/23482781

    to a recent study concluding that, “Our findings suggested no survival benefit with the addition of oxaliplatin to 5-FU modalities in treating CRC in practice. This raises questions as to the net benefit of oxaliplatin, given its known toxicity profile and expense.”

    Of course, there are other studies saying otherwise. It is controversial. But the trend of recent studies indicates CIPN occurs much more frequently and more severely than earlier studies had indicated.

    The acute form of neuropathy that comes and goes with each chemo cycle is no fun, but the chronic form of neuropathy can be much worse in the variety of unpleasant sensations it produces. You definitely don’t want to develop chronic (permanent) peripheral neuropathy if you can avoid it.

    If I had it to do over again, I would NOT have received those five or six doses of oxy. I don’t think the oxy contributed decisively to my survival, but it has definitely contributed to the (reduced) quality of my survival.

    Don’t get me wrong–I’m happy to be alive, I don’t want to seem ungrateful to be alive, but don’t want anyone else to unknowingly expose themselves to the risk of permanent constant debilitating neuropathic pain. If you do get oxy, be careful to monitor your symptoms. If the neuropathy does not completely recede between cycles, consider dialing it back or skipping it altogether. It’s okay to say, “No, thanks. Let’s not do that.”

    Reply

  30. April
    Dec 29, 2014 @ 11:02:54

    Saying so many prayers for strength, courage, peace, joy, and healing. You can do this! Keep planning, writing, and fighting. We believe in you and believe in a cure. You are a beast! Chin up. xoxo

    Reply

  31. Heidi
    Dec 29, 2014 @ 14:08:37

    julie – your story is so similar to my husbands. And the timing of this disease is about the same. My husbands cancer is back – 3rd time – he has the hipec done in May. It is also now in his lungs and his spinal column. He cea as 115…. He started folfox again last week. They are going to do 3 rounds and then reevaluate. He is a patient at cancer treatment center of America. Basically we got that he will never be cured and has to live with chemo. My heart breaks for you and your family. I am living it and it is definitely not an easy path.
    Stay strong for your girls! I hope you enjoy the time with your family when you feel well!!

    Reply

  32. Lisa
    Jan 05, 2015 @ 08:35:36

    Julie, hoping for news from your lung specialists. Please let us know how you are 🙂

    Reply

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