This will come as a shock to almost all of you. I can elaborate on the reasons for why we have kept this information private at another time, but please know that if you did not know, it was not because Julie or I don’t love you, or care about you, or value the role you have played in our lives. Bluntly, if you didn’t know, “it’s not about you.”
Many of you know Julie; some of you know her very, very well; several of you knew her before you knew me; others a little and still others hardly or not at all. But I’ve included you in this because you are someone I feel like sharing this with at this time. If there are others on FB or IRL that I’ve not chosen to share this with, it doesn’t mean I don’t want them to know, but just that it didn’t seem right to me at this time for whatever reason. You do not need to keep this information “secret” but I would ask that if and when you share it that you do so respectfully. Then again, if I thought you wouldn’t, I wouldn’t be sharing it with you, so I suppose that’s a stupid thing to say.
In April of 2008, Julie Margery Jones, my wife of 19 years, was diagnosed with Stage IV, metastatic breast cancer (MBC). At the time of her diagnosis and really up until this fall, there was no indication that the cancer had spread to any other systems besides her bones, and her treatment, though difficult, could in general be considered “successful.” That is to say, when you have Stage IV cancer, you are never “cured,” and you will almost always be in some sort of treatment. The best women with “mets” can really achieve is to be declared “NED”–No Evidence of Disease. Julie has never been close to that, but we have been operating under the basic understanding that modern and advancing treatment methods mean that women with MBC, especially when confined to the bones, can live long past the 2-3 years that’s average for all MBC patients. Julie corresponds regularly with many women who are living decent or high-quality lives 7, 9, 12 or more years with mets. Given Julie’s relative youth and extremely strong spirit, we always figured she’d end up on the high side of that range, though we have tried not to take anything for granted.
I’ll spare the medical blow-by-blow for another time, for those most interested, but suffice to say that things are not working out that way. She had her ovaries removed in September, but recovery from that surgery was much more difficult than we expected. (Her type of cancer literally feeds on estrogen, so even though she’s been hormonally suppressed, her oncologist felt it couldn’t hurt to have them out.) At the same time, though her ovaries showed the presence of breast cancer cells, because of the “affinity” between those systems, no one seemed particularly surprised. But the difficult recovery ended up landing her in the hospital a couple of times to deal with GI side effects from the additional pain meds she’d been taking since the surgery. During the second admission, they noticed fluid on her lungs, and a chest x-ray showed a spot–together they pointed to lung mets. They drained the fluid and ended up getting over a liter from each side. Hold up a liter-sized water bottle up to your chest and you’ll see how much that is. She came home then–the week before Christmas.
Our normally “pull-out-all-the-stops” Xmas traditions were necessarily muted this year, even to the extent that we actually cut down and trimmed our tree all on Christmas eve. But the kids were remarkably resilient and appreciated everything. (Although this year the chemicals on the tree were really getting to both Sam and Julie–next year we’ll be searching for an organic Xmas tree farm.)
But the following week, Julie’s GI symptoms recurred, so it was back to the hospital. After a few days of trying what had worked before, all of us–including Julie–reluctantly decided that in order to improve her strength we had to improve her nutrition and that the only way to reliably do that was surgery. (She had done very well after a similar procedure a year before she was diagnosed with cancer, so we weren’t too anxious about it.) Right before she went into surgery on New Years Day (yeah, yeah, cue the U2 soundtrack), she walked out with her IV pole into the waiting area where the kids and I were (kids are being kept completely out of the Cancer unit because of H1N1) and we they had a nice visit.
The surgery went well, but found there was cancer causing her GI symptoms and throughout her abdomen. Around the same time, tests showed that the cancer had spread to her bone marrow as well. Since the surgery she has struggled with pain and discomfort and only rarely been mentally clear enough to tell us what hurts or what’s wrong. After her heart rate and blood pressure went up, we transferred her to Intensive Care to try and find out why she wasn’t recovering as expected. Scans of her abdomen showed no obvious problems related to the surgery, and other tests failed to show any obvious cause for either her discomfort or her mental fog. Her lungs had re-filled with fluid and that was drained, but only really provided temporary relief. After consulting with the great team at Good Sam, as well as her wonderful oncologist, Devon Webster, we decided to focus on making her comfortable above all else. Yesterday, we transferred her to Hopewell House, a fabulous in-patient hospice.
Once there she continued to be uncomfortable and in distress as she had been in the hospital, but a somewhat dramatic episode everything changed. Her pain is now well controlled and she is sleeping soundly, really for the first time since her surgery a week ago. Gone is the squirming discomfort that she had been experiencing constantly for the past week; her brow has finally unfurrowed. She is sleeping; steadily, deeply quietly.
I slept next to her all last night and in the morning she was exactly the same; just as quiet, just as peaceful, just as free of discomfort. I can’t tell you what a relief it is to know that, whatever happens from here on out, she is at least no longer experiencing pain and discomfort.
Our dear, dear friend Tobi stayed with Sam and Ella last night, and brought them to see their Mom today. All this has happened so fast they are really just starting to understand what’s really going on, but they can see that Mommy is asleep and comfortable, so they are not extremely distraught at this point. The sweet, wonderful people at Hopewell House (and their wonderful therapy dog) have gone a long way to help them feel better about things.
I want to thank everyone who has been so helpful and supportive during this whole time, but especially during the last few weeks when so much has changed so fast. As sad and devastated as I am, I am also deeply comforted by how many dear, kind friends our family has. I will no doubt be calling on many, many of you for support and comfort in the future, so thank you so much for being there for me and us.
If I have not been in touch with you one-on-one, please do not call me at this time–I just may not be able to respond in the moment and go through things. Do please feel free to correspond by email or here on FB. If you would like to visit Julie, please ask me privately first. Also, please don’t send flowers or other gifts–instead, plant a flower, plant or tree that will live on and remind you of Julie. Your love and support are the only gifts that matter.
I will try and update everyone as things change. Thank you again for all your love and support, and for knowing and loving Julie.
This photo was taken on a boat tour in Glacier National Park this summer. We had a fantastic vacation and Julie felt really, really well the whole time. The look on her fact that she has in this photo is very close to how she looks, sleeping, right now.