Home

Another long silence. I know the silence makes many wonder and worry.  I’m sorry for that.  In this case, in addition to dealing with the usual medical ups and downs (mostly downs at this point), I was simply busy with the holidays, lots of family visiting and staying with us, and throwing myself a 41st birthday party in our newly combined and renovated apartment.  All of these events that carry with them symbolic acts of living and life revolved around not just family and friends, but also this special place I worked so hard to create – home.  Ironically, even my medical developments seemed to resonate with the sense of coming home.

A week after my last blog post, scans showed that I had failed the clinical trial I had been on at Memorial Sloan Kettering (or more accurately, the trial had failed me). They revealed growth in abdominal lymph nodes and two new lesions on my liver (which I suppose is preferable to new lesions in my liver).  The news was, while not unexpected, still upsetting, because I now have involvement in another vital organ, another way by which the cancer could actually kill me.  Will it be my lungs or my liver?  There was some shrinkage and some growth in my lungs, so the thoracic tumors were overall unchanged.  I lost my hair for that awful trial, suffered unbelievable fatigue, underwent that atrocious lung biopsy and for what?  Absolutely nothing!  I was kicked off the trial for progression, although I ran first, so I like to think I kicked it. 

Dr. V offered to put me on Lonsurf, which is standard of care.  It is oral chemotherapy that has shown limited effectiveness in a subset of colorectal cancer patients and at best can only offer stability for several months.  When I had consulted with Dr. M at Georgetown in October, he told me he always prescribes Avastin with Lonsurf because they operate on different pathways.  Based on his recommendation and the tolerable nature of Avastin, I wanted to do the same.  Dr. V told me Memorial Sloan Kettering doesn’t do that.  Why?  Because that combination is not indicated, Dr. V told me (i.e., there are no studies to support the combination (although there are no studies to not support that combination either)).  I left her office, emailed Dr. AC while on the subway and received a response minutes later, saying that he would prescribe the Avastin with Lonsurf for me, assuming there were no objection from the insurance company.  He secured both for me in less than two weeks.

Note that I emailed Dr. AC and he responded within minutes. I never got Dr. V’s email address or her cell phone number.  In order to reach her, I had to go through the processes in place at MSK.  I emailed Dr. AC and my nurse practitioner to ask if the Avastin had been approved.  My NP said yes; I emailed back asking to come in the next morning for treatment; she said sure.  I didn’t have to actually call for an appointment.

I walked back into the NYU Cancer Center two days before Christmas and was immediately greeted by familiar faces. People asked me where I had been, how the dog was, how the kids were and how I was, in that order.  It was familiar.  It was comfortable.  It was easy.  People hugged me.  I pointed to my hair and told them it was a wig.  They universally gasped in shock (because the wig looked so good).  Dr. AC, despite his usual grumpy outward demeanor, seemed very happy to see me too.  He asked me how Sloan was.  I told him it sucked.  He asked me why.  I told him about my biopsy experience.  He wanted to know who the interventional radiologist was (no doubt so he could file that information away for future use).  I spared him the lengthy diatribe against MSK, but I will elaborate here.

MSK’s facilities are beautiful and it is wealthy, befitting its number one ranked cancer center status, and when you get contrast for your scans, they are able to use your port so you poor veins don’t have to be stuck multiple times. But aside from those positives, I experienced many issues – the long waits, the elaborate scheduling procedures, the arrogant and insensitive interventional radiologist who told me I had tumors “everywhere”, the canceled appointments without notice, the lack of continuity of care in that I had a different infusion nurse each time (which prevents one from developing a meaningful relationship with anyone).  Of course, there were kind people at MSK, including Dr. V and her staff, but as a whole, I never felt like the institution cared.  I never felt comfortable and comforted.  I was one among so many.  Perhaps, my feelings would be vastly different had I always been a patient at MSK, but alas, I made the decision early on after my diagnosis not to go to MSK.  I clearly had similar misgivings three years ago.

I digress. Dr. AC then started talking to me about a clinical trial I had mentioned to him over email.  I told him that apparently all the spots at MSK had been taken and that I was considering going to Yale to see if it might be available there.  He picked up the phone, said I owed him big-time, and then called the head of GI cancers at Yale and a former NYU colleague, Dr. H.  Dr. H. knew of the trial, told Dr. AC to send him an email with more info and he would put Dr. AC in touch with the trial’s principal investigator at Yale.

We then spoke about problems I had been having with my bowel movements, which of course made me think that a new tumor was growing in my colon and that I was on the way to a blockage and eating through a tube. I knew I had to go get a colonoscopy, which I hadn’t done in 1.5 years.  I go to a GI that Dr. AC recommended.  She is an amazingly warm doctor; I love her.  He told me to go get a colonoscopy, that he would have to hold the Avastin until after the colonoscopy and whatever necessary procedures resulting therefrom.  He said there would be other things they could do if there were a blockage before feeding me through a tube.  He told me that if I had difficulty getting a prompt appointment with the GI, text him and he would make sure I got in faster.  He made me feel like whatever the problem, no matter how awful it was, we would deal with it.  Not that he would make it go away or cure me (because we both know that’s not going to happen), but that we would find something to make me feel better.  (My colonoscopy was fine.  No stents or feeding tubes for me yet.)

When we were done talking about everything, Dr. AC gave me a hug, conveying in that hug how glad he was to have me back. I got the distinct feeling that I was his wayward, rebellious child, coming home, right in time for the holidays.  I had left him in anger, especially after Dr. M condemned him for putting me on the immunotherapy/radiation combination.  I thought I would do better, be “safer”, in the hands of an oncologist who specializes in colon cancer backed by the mighty MSK, that I should blindly trust such a person.  I was wrong.  After the MSK trial failed, one that Dr. M had deemed “reasonable” for  me to try, I realized that Dr. M had been wrong to condemn, that Dr. M (who inspires so much confidence) had no idea what to do either, nor does Dr. V.  None of these poor oncologists know what the hell to do in the face of this horrid disease, especially at this stage.  They simply do the best they can, and I realized that Dr. AC’s best for me in many respects is far better and more comforting than Dr. V’s best..  Dr. AC calls in favors for me.  I’ve never had a doctor who will just call another doctor on my behalf with me right there.  He lets me call, text and email him at all hours of the day and night.  (I had severe back pain earlier in the month that I was concerned was a spinal tumor and texted Dr. AC during off hours, asking him to call me.  He did.)

I then went downstairs to see my infusion nurse to get the needle removed from my port (as I just had blood drawn from there earlier). It was then that my nurse told me the following:  About a month earlier, she had been riding the elevator with Dr. AC.  She announced, “I really miss Julie.”  His response:  “Don’t worry.  She’ll be back.”  She replied, “How do you know?”  He stated, “Because Sloan sucks.”  Dr. AC knew; he knew me and what kind of patient and person I am.

I know many who read this blog go to MSK. My opinion of MSK is entirely mine based on my own personal experiences.  I know many who love it there, people who have been cured of their cancers.  I just happen not to be one of those people.  I believe that I will die from my cancer, that I have an infinitesimal chance of being cured or being able to manage this disease as a chronic condition.  Knowing this, I need to feel like I am surrounded by a medical team that truly knows me and cares about me.  I need to know that they will be there with me as I walk to the end.  I know Dr. AC and his team and all of my other doctors at NYU will be with me.  They give me a sense of comfort, a sense of home.  Through my brief time at Sloan, I have come to realize that this sense of homecoming matters a lot to me.

This is not to say that I will not go back to MSK for a trial. Indeed, Dr. V was very understanding when I told her I had gone back to Dr. AC because he was willing to get the Avastin for me.  She even said, that given my ability to manage my own care, she would be okay with me getting my scans at MSK while seeing Dr. AC for treatment.  The best part about MSK is their ability to use the port to inject contrast, instead of using veins.  That is a big plus to me in favor of MSK.  She would not agree to this for many patients simply because going between two institutions requires a lot of juggling, but for me she would make an exception.  I also want to maintain a good relationship with MSK for trial opportunities.  Indeed, there’s a trial I’m very interested in; new spots are to open in February or March.  MSK did offer me another trial through its immunotherapy department (unconnected to Dr. V).  It was not at all appealing.  I know someone who did horribly on it.  The very limited data they gave me on how patients have done so far was abysmal.  I said no.

I’m currently on my second cycle of Lonsurf and Avastin. I have a persistent and constant soreness to the right of the belly button all the time these days.  The scan report says it’s likely cancer growing on surgical scar tissue.  Judging by the pain, I don’t think the drugs are working. They just make me nauseous and dizzy.  Last week, I was so dizzy I bought a cane so I wouldn’t lose my balance and fall on the street.  After coming in from walking the dog, I proceeded to throw up.  In 3.5 years of treatment, I have never thrown up from chemotherapy.  This was the first.  Awful.  Hopefully, the dizziness is a passing side effect (and not a brain met).

I hope (although I don’t really believe in hope in this context, as you know) that the Lonsurf and Avastin can buy me some time until the next worthwhile clinical trial or, better yet [add cynical laughter], the miraculous cure comes along.

I left home when I was 17 years old, for college, and, other than short stints, I never came back. For years, I lived in dorm rooms, homes of host families abroad, sublets and apartments that were the subject of short leases.  I flitted about, going to school, studying abroad, traveling, working and then more school, and then more work and more travel.  I craved newness, new places, new people, new challenges.  Strangeness was frightening, but mostly it was exciting.  I didn’t have a home to call my own, but that didn’t matter to me.  I was poor most of the time.  The more uncomfortable my habitat the better because that meant I was saving money.  Back then, I thought I would live forever, that I was invincible and embraced my freedom with an abandon that belongs only to the young.  I wasn’t so different from anyone else in her late teens and twenties.  But age and kids and actually earning a decent living changed me, and cancer even more so.  I have become a creature who yearns for comfort, for a sense of security, for home.  It’s obvious in the way I cried hysterically amidst the impersonal unfamiliarity of MSK and how  gratefully I returned to NYU.  It’s obvious in the way I just want to actually be at home all the time now.

After eight months of construction, a couple more months of punch list items and hanging things on the wall, and buying a piano (our last piece of new furniture), the home that Josh and I dared to dream of in the summer of 2015, despite the ever present black cancer cloud, has been realized. I cannot determine what I love most about our new home:  the oak-patterned gold gilded wallpaper that accents one of my bedroom walls; the mantle over the new electric fireplace made from a piece of reclaimed walnut; the row of custom-built closets with lights that automatically go on and off with the closing of the doors, radiant heating in the bathroom floors; or the motorized window treatments.  I made all the design decisions – thank you Josh for giving me so much latitude – knowing that this place would be the last place I will inhabit and most certainly would be where my family and friends will come see me in my final days and where I will die.  I wanted it to be a place of as much luxury and comfort as I and Josh could afford.

Beyond and much more important than that, I designed it, knowing that it will the place in which my children will grow up. I had to think about the adjustable nature of shelving in their closets, the versatility of a bathtub over a shower stall over time, and how the extra room could serve as a playroom now and then one day as a teenage hangout separate and away from the adults.  As such, aside from this blog, this apartment is my single greatest physical gift to my children, a tangible legacy of a home that I want them to treasure for many years.

Now, there are many nights when I lie on Mia’s or Belle’s bed staring up at the princess chandelier that hangs above and I recall all the nights that I lay on my own bed as a little girl and then as an adolescent. Of course, back then my mattress was lumpy and dented, and I stared at a popcorn ceiling and an ugly square overhead light fixture with a giant black screw in the middle.  But it was in that childhood bedroom, a room that has long since been demolished together with the rest of the house, that I wondered about my future, about the faceless and nameless man I would one day marry, about what seemed like four long years at a faraway college that loomed ahead.  It was there that I dreamed of seeing the world, of traveling, of adventure and romance.  I stressed about exams and worried about friendship dramas that I no longer remember.  I wonder what thoughts, fears and dreams will course through my daughters’ minds and hearts, as they lie in that exact same position.  For them, their musings will be colored by the tragic loss of their mother.  I think to myself as I stare at these rooms that I built just for them, if I concentrate hard enough, I will leave a bit of me behind in this place, so that when they lie in their beds with exhaustion or anxiety or hope, I will be there to share in those most intimate of thoughts and feelings, that a part of my spirit will always be with them, especially in this place.  To the extent that a place with all of its superficial things can convey anything of substance about those who designed, built and occupied that place, I hope their bedrooms, their bathroom, this entire apartment, their home, will bestow upon them the knowledge with absolute certainty that their mother loved them so very much.

Home is where I am now. And, in a sense, home is where I will always be, even after I am physically gone from this world.

Advertisements

12 Comments (+add yours?)

  1. Paul@efbpilaw.com
    Jan 25, 2017 @ 20:59:51

    Damn Julie. Your home is a wonderful place quite obviously but clearly much more so due to its inhabitants and the experiences that happen there. That’s why both homes carry so much meaning to you. I suppose this home is ultimately going to carry powerful memories in many directions for your family but for now, its a warm reflection of a vibrant and very much alive person

    Reply

  2. Chrissy Rice
    Jan 25, 2017 @ 21:11:04

    Julie, a wonderful update and beautifully expressed love for your family.
    Nothing like a warm home that you created not just by materials and decor, but by you heart and soul.
    Hugs
    Chrissy Rice

    Reply

  3. Kathy
    Jan 25, 2017 @ 23:39:56

    Another beautiful entry. Thank you for sharing. I’m so glad you’re back in a place where you feel comfortable and supported. Your home sounds amazing. What a wonderful gift for both yourself and your family.

    Reply

  4. Tina
    Jan 26, 2017 @ 01:13:15

    Julie,your beautiful writing is yet another priceless and tangible gift to your daughters and whole family.It feels like you are sitting right next to me and telling me about Dr A.C and Dr V. If I feel so moved reading it,I can just imagine how your family feels!Your words are alive and breathing with abounding resilience, strength, honesty and the deepest love for your family.It will be a treasure trove for your girls especially.I am truly humbled by the power of your words!You are my Hero!Big Hugs!

    Reply

  5. Cristina
    Jan 26, 2017 @ 08:24:26

    Thank you for updating us. Your writing is beautiful. Just wish it was fiction, and you didn’t have this monster disease. If you come to Yale, I would be honored to pichk you up from the station and drive you to the hosspital. Smilow is where I have gone for the past 4 plus years. My best to you, the girls and Josh.

    Reply

  6. Anne
    Jan 27, 2017 @ 17:26:32

    Julie, I so admire your courage. It may sound weird to say I am happy for you when your daily struggles are beyond anything I can imagine, but I am happy for you that in the midst of so much that is bad and unfair you are able to enjoy your beautiful home. I can imagine it from your descriptions. I also can relate from personal experience to what it means to make all those decisions to renovate an apartment and create a home for your children. I get the significance of this creation of yours and am really glad that the renovations are done and you are here to open and close those closet doors to see the little light turn off and on. I will continue to hope for that miracle for you, and your very special family.

    Reply

  7. Giada W
    Jan 28, 2017 @ 08:51:26

    thanks for the update. I’ve learned through a serious heart diagnosis that being comfortable with your doc and his or her supportive staff is incredibly important. No medical provider is perfect but concern, availability, niceness, and smarts are crucial. The apartment sounds amazing (except the wallpaper –need to see a pic!).

    Reply

  8. Tyler Burton
    Jan 28, 2017 @ 22:39:34

    Thank you Julie for sharing and update. You’re apartment must be spectacular. I remember the floor plans you showed me. What a fabulous home you have created and built. Happy birthday by the way. Enjoy being a homebody.

    Reply

  9. Maureen Doran
    Jan 29, 2017 @ 11:20:42

    Julie, my words will be inadequate to describe what your words evoke in me — especially those that harkened back to your girlhood dreams. What a beautiful gift for your daughters. I wish in addition that they can have the gift of time with you…many, many more years of time. I hate this stupid robber of a disease — this sneaky horrible thief that steals so many from this world. I loathe that it keeps trying to take you from your loved ones. Sending ❤ and hope that Lonsurf + Avastin will keep you going and that the next trial will be effective. Thank you for the blog; thank you for sharing.

    Reply

  10. Michelle Katsaros
    Jan 31, 2017 @ 10:48:21

    Dr H. from Yale is fantastic. Hoping he can help you.

    Reply

  11. Sarah Gonzalez
    Feb 11, 2017 @ 18:35:54

    I too have stage 4 colon cancer and understand your pain. My sons are 5 and 7 and sometimes I am overwhelmed by panic at the thought of them growing up motherless. I really enjoy your blog. I just hate you are going through this. With much love, Sarah Gonzalez

    Reply

  12. Rebecca Wu
    Feb 12, 2017 @ 01:26:09

    Hi Julie, I was plowing my emails and wondering if you had checked in with a new blog. So glad to hear back from you. I am sorry to know that the clinical trial didn’t work on you. Really hope that Lonsurf and Avastin can do the trick for you for a long while. 😀 Continue to stay strong! ♥♥♥♥♥ You are in my prayers.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: