Frustration With Kaiser Oncology

Jack’s health has (thus far) improved since he received vancomycin for the latest bout of c.diff. He was noticeably more energetic and all around happier within days of starting the antibiotics. It had been quite some time since I’d seen him run his mouth a mile a minute and run and jump all over the place. It was refreshing (and, yes, a little exhausting).

Jack’s ANC numbers, which climbed immediately upon his treatment being suspended, are still very high – the highest they’ve been in the last two years. They have remained high due to the fact that he is taking very, very small doses of maintenance chemotherapy since his hospitalization in August last year. In fact, the oncology team has expressed more than once that they are concerned about the low dose. The worry is that it’s not enough to keep the cancer at bay. But since August, every time the dose of 6mp and methotrexate are increased, his white blood cell counts plummet so the increases have to be made very conservatively.

Frankly, the oncology team seems frustrated. Jack tolerated much greater amounts of chemo for almost two years and they really don’t know why it’s suddenly a problem. And it sounds to me like they aren’t fond of the fact that they don’t have an explanation for what is going on (the test for 6mp sensitivity comes back normal, but he has symptoms of sensitivity to it anyway). The commentary from the oncology team is confusing and, often, seems to deflect the blame toward my kid or me…

“We think labs are being drawn too often.” – to which I replied that I am drawing them when they ask me to…

“We think this is school avoidance.” – so you’re saying that a psychological issue can wipe out white blood cells? Are we just ignoring the two c.diff infections now? Are you saying he caught it on purpose in order to get out of school? And we’re manufacturing the fevers somehow?

“The majority of kids on these medications do not have these problems.” – okaaaay…but my son DOES so what do we do now?

“We really don’t think this is related to any sort of relapse.” – I asked the question ONCE but you keep feeding me that line out of nowhere, so it kinda has me thinking that’s EXACTLY what you’re worried it is related to…

On Tuesday Jack was feeling unwell – he had pain in his stomach, his chest, his head and eyes(???), his hands and feet – all of which were unrelieved by Tums and Tylenol. It was two days post-6mp-increase and the day after an increased dose of methotrexate. I emailed our case manager to let her know how it was going – a warning in case this is the sign of another downhill slide of white blood cell counts – as it seemed pretty clear to me that the pain was related to the increase. I asked for nothing – I just wanted to keep her posted on his condition.

Here’s the reply I received:

“I’ve reviewed your concerns with Dr. Goodman and we are reluctant to validate the increased chemotherapy is the cause since the dose is still extremely low.

Looking back, from October 2012 to August 2013 he was taking approximately 3 times his current dose without any of these similar issues. I do not feel we can attribute his complaints of transient pain to an increased oral chemotherapy dose.

If you think nausea is playing into this, you should try Zofran once at night with his oral chemotherapy and again in the morning to see if this alleviates some of his complaints.

I would also like to emphasize that the overwhelming majority of kids tolerate full doses of these medications without complaints. The most common complaint is nausea on days (usually the morning after) when kids take their oral Methotrexate, but even that is not very common.

Ellie didn’t bring in Jack’s pain diary at the last visit. I recommend you and Joseph commit to keeping a pain diary (you can use a simple google calendar – it doesn’t have to be complicated!) for Jack’s pain and bring this into his next visit.

Please feel free to call if you have any concerns or questions about this email.”

I still have yet to respond. I don’t know how. I am trying (and failing) to not feel offended by the tone of the message.

My son’s care is in the hands of this oncology team and yet they are so dismissive of his experience. Not only that, but they don’t seem to know what they are talking about – I’ve done enough reading to know that others DO have these issues with 6mp and methotrexate (it was easy enough to find parents talking about the same thing going on with their kids when I did a google search) – or they are just straight up lying to me. I don’t understand why they would do that, though.

I’m hopeful that Jack remains fairly stable (he has felt much better since Tuesday) and glad he’s been doing much better overall. Still, I wish our oncology team was better at instilling confidence in the treatments they’re using. I wish they didn’t alienate us like this and instead tried to offer some support or even a little sympathy!

Perhaps Kaiser’s relatively low premiums don’t pay for things like concern for quality of life, though.

Divorce and Empathy

My friend Becky is in the early stages of divorce, a situation that brings out a lot of empathy in me. It’s not only a divorce – it’s also a complete shift in her life; she is completely starting over from scratch (which is fairly typical with divorces). This, naturally, takes me back to four years ago when I did the same…

I had been married almost nine years to Joe when we called it quits. We’d been together since we were 16 and neither of us had ever lived on our own. We grew up together – and we outgrew one another. We had been trying to avoid the inevitable for years, doing everything we could think of to adjust to one another, including individual AND couples counseling. Divorce came up so often in our relationship that we had already decided “if we ever get divorced, that one is YOUR cat.” He regularly talked about women who would be “next in line” and I tried to escape with friends or travel as often as I could.

Not long after moving back from the isolated northern coast of California to the Bay Area and starting a new job, I started having a serious mental breakdown. I had an incident where I could not get out of bed – I felt entirely zapped of energy and I had to be guided to the car because I was so disoriented and dizzy. The stress had built up so much that my own willpower was no match for it.

I started therapy again and got some anti-depressants. In talking with my psychiatrist (who reminded me exactly of Dustin Hoffman’s character in Stranger Than Fiction), I realized I had some serious personal issues I needed to work on that just could not get resolved while I was in that relationship with Joe. I had to start from scratch if I was going to fix anything about myself. I had to separate completely from unhealthy patterns, behaviors, and people. I had been trying to live a life that just wasn’t me for too long and I was no longer able to stuff myself in that box.

The conversation about separating took about two minutes. Joe and I both new where we stood with one another and knew it’d be a relief to not be together anymore. Everything else aside, we were a bad match – nearly complete opposites when it came to goals, personality, and values. This was not difficult to see. The only reason our relationship had been ‘working’ was because I’d been suppressing so much of myself for so long, trying to mold myself into a good wife for Joe. I might have continued to do this if my own psyche hadn’t put a stop to it. Even Joe had told me, “You aren’t the person I fell in love with at 16.” He was right.

Almost all the difficulty in the separation came out of the reactions of family and friends (not everyone, mind you – we had support, as well). Someone made the comment that because Joe and I had been together so long, had seemed so comfortable in the way things were, that they had placed us in the category of “not breaking up ever.”

Reactions varied – some took sides (although we both maintained that it was a mutual decision) and others felt scared about their own relationships. People argued that we hadn’t tried hard enough, hadn’t done enough to save the relationship. As hard as my depressed and scattered brain tried to make sense of it all for others, I was not able to coherently explain that the relationship was a fraud – that I was a fraud – that I had buried myself for a decade. The relationship was an illusion and there were some fundamental problems with me (and Joe, as well) that needed to be fixed. Guessing at the people we would likely be once these issues were addressed, it was blatantly obvious we wouldn’t choose to be together (if even friends) once healthy.

We both grieved the end of the relationship and the major upheaval in our lives. Joe did so openly, as he is a very outgoing person. I, on the other hand, am more private – it’s only through writing that I am able to share most of what I’m thinking and feeling. My therapists have always had to PULL information from me.

Unfortunately, my lack of demonstrativeness was seen by others as coldness. I didn’t seem to be upset enough. I seemed to be carrying on just fine. (Meanwhile, I was taking bathroom breaks often to deal with my panic attacks in private. The idea that my personal life would affect things like work was appalling to me – I needed to work and I needed to take care of my child and I needed to start all over. I didn’t have time for grief.) A number of people were MAD at me – felt that my seeming indifference was aimed at Joe. The things that were said about me hurt deeply, especially since I was struggling with my long-ignored mental health in addition to this huge life change.

Some of the relationships I had before the split were never quite mended. I still haven’t yet figured out my place with my family-by-marriage. I was fully entrenched in that family for over a decade and loved them as my own. But somehow when Joe and I split, I lost my place with them. I still feel most conflicted about that.

I write all of this not because I want sympathy after the fact but because I would like to implore everyone out there to have empathy for those going through divorce – for BOTH people. Joe did horrible things to me during our marriage and I did horrible things to him, but in the end – even if those things had never occurred – we were wrong for one another and we both knew it. Neither of us wanted our child to grow up thinking that he should force himself to stay in a bad situation that was leaching him of happiness. We wanted to show him how to go out and seek what he needed, to find those things that feed his soul.

I’m proud of myself for walking away from the marriage. I’m proud of myself for sending the message to my son that love and happiness are important. I’m proud of deciding that *I* was important.

Divorce is hellish, no matter how amicable it is. Starting over SUCKS and everyone makes mistakes while doing it – they are, after all, making extremely important decisions about life while under a ton of stress. But sometimes, even as painful as it is, it’s the right thing to do. Without happiness, how is life worth living?