My cousin’s Life Celebration event is happening next Saturday (3-29-2104). She died from neuroendocrine colon cancer on March 2, 2014, after a horrendous eight plus month battle. She fought hard. She had so many complications from the cancer, as well as the expected miseries of chemotherapy (which nobody really anticipates, because any prior frame of reference is just far too inadequate). She wasn’t able to catch a break during that whole time, from a month or so before she was diagnosed until she died. But her support system was amazing ! Her mom and brothers (and their entire families) were there as much as possible. I am still in awe of her co-workers and friends who never stopped caring, or offering some type of transportation, meals, or other ‘actions’ of support. I was so thankful she had that. I wish I could have done more. I wish I could be at the Life Celebration to meet so many of her close friends and co-workers. My own medical issues prevent me from doing an all-day-away-from-home thing with the equipment I have to have. So, I’ll have to be there in spirit only. SO, I write, and hope that I don’t dishonor my amazing ‘editor-of-textbooks’ cousin with inconsistent verb tenses and other grammatical horrors 🙂 Emotions and tears are messing up my self-editing a bit.
When I moved back to my hometown in very late 2002, we reconnected at the legendary family Swedish Christmas Eve party. That was the beginning of us becoming good friends, as well as cousins. We e-mailed and talked on the phone periodically, and it was always as if we’d just been in contact the day before. We reminisced about past Christmases and various relatives, and laughed a lot. She was always so supportive about the myriad of medical issues I’ve gone through, eventually ending up disabled. As an RN, I was able to help out when there were things going on medically with family members (including Max, her cat), as well as herself. I’d try and explain the crazy confusing medical things. And then came May 2013.
She called me before her trip to San Francisco, telling me of some troubling symptoms, and asked me what I thought, as she’d seen one doctor who just wasn’t giving her the idea he really heard her. I had my usual “piss on him” reply, since doctors work for the patient, and if it’s not a good fit, the doc is the one who needs to get the boot. I suggested she ask her primary doc for a referral before the San Fran trip to get an appointment scheduled, which she told me she planned to do. My memory of what happened when is blurry from that point on, since Kathy began having intense pain, with frightening changes in symptoms not that long after her first appointment with the new doctor.
When she finally got the diagnosis, I suggested she send her first full colostomy bag to the jerk doctor that blew her off (she cracked up at that one 🙂 ). Then, I started looking things up on the internet about neuroendocrine tumors. I’ve worked in many different areas as an RN, but not specifically on any oncology floors (where the chemo and cancer-specific care takes place). I can take care of post-op (surgical) cancer patients in my sleep… but when I saw the information online, I just cried. I had to reboot myself, so I could be more useful for her. The statistics were grim, but very few things in medicine are absolute, and with her otherwise good health and age, I really hoped she’d be able to beat this, and be one of those in that very low percentage of survivors. She was offered some treatment options. Kathy never had any other intentions. LIVING was the only option she considered. We never discussed anything about her dying, aside from a few statements and questions at the very end.
Something really important began to happen over and over again during her battle. Whenever she felt something wasn’t quite right, or the explanations given by the doctor just didn’t seem to fit, she’d call me because she knew something wasn’t right. I noticed how incredibly well she knew her own body, when she was having to get used to SO many ‘new normals’. She just knew when things weren’t right. AND, she did something about them. She didn’t wait for something to completely fall apart before finding out what could be done to fix it, or at least figure it out. If what the doctors were saying just didn’t feel like what she was experiencing, she found one of them who could explain what was going on in terms that made sense. Doctors can be so good at blowing through explanations that sound like Greek dipped in Latin, leaving patients more confused or just unsure; add chemo-fog to that, and it gets even worse. More people need to follow her example- keep asking until you know. I told her that I was going to blog about that at some point, and she was fine with it. I also promised not to throw her identity out into the universe in the blog (as well as not name too many others’ names). Thankfully, she was given a name that still allows me to recognize her, while honoring her wish for anonymity. Those who know her will know that this is about her. And her amazing fight. And ongoing strength in the midst of hellish situations.
I was SO glad to finally see Kathy last Christmas, at the family Swedish Christmas Eve party. I’d seen photos of her, looking quite well for someone going through so much. But I had to SEE her for myself. We took a bunch of photos (most of which have people looking off in various directions at a LOT of different cameras 😀 I’m so glad we all have those photos… ). We talked. And she was hurting. It was new pain, which worried me. When she got home, she had it checked out, and that pretty much started the beginning of the end, as I saw it.
In early January, I noticed she wasn’t replying to e-mails, which was not like her at all (I have hundreds of e-mails between us during her cancer battle), or writing much on CaringBridge herself. She called a few times, telling me what was going on, and what else she had to have done TO her. And then, she was told there was nothing left to do. I was in contact with her mom and brother during this time as well. I knew things weren’t good before she was ready to tell me herself. I never wanted her to think I’d given up, or to bring something up that she wasn’t ready to talk about . She never wanted to know that living and surviving weren’t an option… but at some point, it has to be acknowledged and dealt with. It’s not something that is ‘wanted’ information… but it is necessary for the best possible care to be made available. I’m thankful that she had someone looking out for those painfully hard things. She had to deal with it in her own time.
That started the last of our phone calls. During the earlier ones after treatment stopped, she said she didn’t feel like she was dying. She wanted to find some alternative options, and why not? She was still in ‘fight mode’. She told me that if she just wasn’t so tired, she thought she could do some work from home like she’d planned. In the next few weeks, she sounded more and more tired. And then we had the heartbreaking phone call when she asked me what she had done wrong that she wasn’t going to be able to live. I told her that she had gotten a really mean, cruel cancer, and nothing she had or hadn’t done caused it. Then, in an almost childlike tone the last time we spoke, she very gently asked me why I’d been able to survive the cancer I had (a very lethal form of leukemia unless treatment is started very quickly; it has a 30-day survival rate if no treatment is done). There was no bitterness in her voice, but what sounded like a painfully desperate attempt to understand the incomprehensible. She knew she could ask me anything. I told her I’d just been very lucky, and agreed when she said she felt like she’d been dealt a really harsh hand. And we both said “I love you.”.
Shortly after that phone call, I talked to her mom and found out that hospice was in the picture. Her brother and sister-in-law called me the night she slipped away. I knew from the caller ID who it was, and what they were going to say. I think I just bawled and sounded like an idiot. I knew it was coming, and it still hurt like hell. I can’t imagine what this has been like for those who have been right there since the day she was born, or spent the better part of the last decades knowing her.
It’s been three weeks today, and it’s still hard to believe she’s gone, and on the other hand, it feels like she has been gone for so long, maybe because life as she knew it stopped last summer. I feel so privileged to have had Kathy in my life, and as family ! I’m humbled by her courage and strength during some indescribably difficult situations. She personified so much good. She always looked for the things to smile at, and had a laugh that I can still hear when I remember good times. When I found individually packaged slices of Spam on Amazon, I had to pause and remember that I had nobody to send it to… that she wouldn’t be able to laugh at that.
I know I’m not alone when I say that my life was better having known Kathy.