On venting

For the first several months of this blog, I spent a fair amount of time working on my posts. I wrote a lot of things that never made it in front of any eyes other than my own, and sometimes Paul’s. I used writing for the blog as a way to process what was going on. I’d write a bit, save a draft, do something else, come back and delete, edit and write more. I was on a leave of absence from work, and was at home most of the time, so I had lots of time to give to my writing.

For the past month, I’ve been trying to hold down a job again. It has taken a while for me to work back up to a relatively normal schedule, but I’m getting there. What this means, however, is that I have many fewer hours each day in which to deal with household chores and medical bills, process my feelings about the myriad things that are “up” for me right now (Paul’s health and emotional well-being, my physical and emotional well-being, our finances, our future… you get the picture), and, oh yes, think about blog posts. So I’ve been spending less time writing my posts. Sometimes, because it’s just easier, I’ve posted photos of our cats or written travelogues about past anniversary celebrations. Or, when I’ve been particularly worked up about Paul’s medical care, I’ve done what, for me on this blog, passes as venting.

You may not have recognized my posts from May 27, May 28, June 3 or June 5 as venting. Looking back at them, I recognize that I wasn’t particularly clear in expressing my frustration and anger (though you could certainly see it leaking out all around the edges… need more therapy, Kimberly?). There was a whole lot more kicking and screaming going on in my head than I put down in writing. And there was a whole lot less processing of and reflection on my feelings than went into many of my earlier posts.

Melanie nailed it in her description of the downward emotional spiral arising from the absence of needed attention/care: frustration, anger, depression, withdrawal, isolation, resentment. I won’t speak for Paul, but I’ve gone pretty far down that spiral a few times recently, and for me, each repeat trip seems a little faster. And, unlike the rat who, having learned the maze, gets to the cheese faster, this human still isn’t getting her (or her husband’s) needs met. Clearly, we have not found a satisfactory strategy. So, how to get the needed care? First (deep breath), I have start again with the (previously held) assumption that the folks at UWMC are both able and willing to help us solve the problems that Paul is having. (And that if by some chance they can’t, someone else can, and we just have to keep looking.)

Just so you know, I’m not planning to dump on Dr. Futran’s desk either the President’s Cancer Panel report on survivorship, or the large number of patient-education PDF files and web pages related to swallowing and tube feeding that I’ve found on the web sites of other hospitals/organizations and even UWMC. Here’s what I am planning to do: Along with Paul, write a letter to Dr. Futran, using the list of recommendations from the CPC report as a (hidden) framework. In the letter, discuss how we feel about the care that Paul has received (both the positive and the negative), and what we want/need now in the way of records, information, resources, etc. Include a list of questions that we want to have answered regarding Paul’s healing, swallowing, tube feeding and follow-up care. I’m thinking about faxing the letter to him a couple of days before Paul’s appointment on July 1, so that he’ll have time to read it before he the appointment.

In the meantime, I’ll try to work on a little more clarity here, too. But understand that there may still be the occasional passive-aggressive leakage… or lots more pictures of the cats.

Sunday update

I’m posting tonight so that everyone can see that I haven’t lost the ability to type. Kimberly is feeling exploited because she has posted the last four posts in a row. She seems to be deaf to my pointing out that she is the one who decided we had to post every day. Apparently, the option of just not posting is not acceptable, and so it’s my responsibility to go write.

I, on the other hand, don’t feel like there’s much to write about. Today is primarily notable for the fact that I consumed TWO, count ’em two, cans of spacefood, thanks to the handy dandy pump. Both were diluted with water, and the pump allowed me to adjust the flow rate so that they went in over a period of hours. Despite this, I’m still not where I want to be in terms of calories today, so I’m hooked up as I write this.

While I spent the day hooked up, Kimberly spent most of the day out in the garden. The Seattle weather-guessers were wrong again, and the expected thunderstorms failed to show. She did yeowomanly duty pulling up weeds and trimming the hedge along the front walk. During breaks in my feeding, I went out to help, pulling up dandelions and sweeping up.

Tomorrow I have another rehab appointment, earlier than I would like. I’ll have to get up early, which means I should go to sleep soon. Which may be problematic, since I’m already feeling uncomfortably full, and I have a lot more to drain down my tube tonight. Besides missing tastes and smells and the feel of solid food in my gut, I’ve gotten to the point where the thing I’m missing most about regular eating is the ability to not have to think about it very much.

The three-month report

Three months since Paul’s surgery… I go back and forth between thinking “Has it already been three months?” and “It has only been three months?” My sense of the passage of time is out of whack.

As you will have gathered from the past couple of days’ posts, the three-month report is, well, mixed. I try to remember to be thankful every day that the squamous monster is gone, and that, for the most part, Paul is healing well. Unfortunately, I don’t always manage to do that, particularly not when my sweetheart feels ill from a feeding, and I can’t do a damn thing to help him. This three month anniversary is a frustrating reminder that Paul’s doctors thought – or at least said – that he’d be swallowing within “a couple of months” after surgery. He is swallowing a little bit, but not easily, and not nearly well enough to do without the tube feeding. This is not the way it was supposed to be at this point!

I was thinking today that I want to talk with Dr. Futran again. I want to hear what his thoughts are on Paul’s swallowing problem, and whether he has any suggestions for how to proceed from here to get Paul eating real food again. Paul has a follow-up appointment scheduled in early July, but that feels like a really long time from now.

Putting one foot in front of the other

That’s about all that it feels like we’re doing right now… just concentrating on getting through each day, one slow, slogging step at a time. My sister told me when she called today that, until Paul’s post last night, she hadn’t realized that we were still really struggling with feeding issues. Looking at the posts from the past few days, I can see where that would be the case. For me, at least, it has been easier to write about the cats, or our anniversary, or dancing, than to catalog my daily worries about Paul’s digestion, his swallowing (or lack thereof), his state of mind. Anyway, here’s today’s report, such as it is…

This morning we tried to get in touch with folks at UW to let them know that things aren’t going well with Paul’s tube feeding. Paul called Carol, the nurse practicioner in Dr. Futran’s office, who is our all-purpose hospital contact person. I called Judy, the UWMC nutritionist with whom we’ve had a couple of conversations about formula options. Neither of them were at their desks. We left messages… and then we waited. I did some work here at home. Paul slowly put some food into his body, in fits and starts due to the now familiar discomfort.

Late this afternoon, Judy called back and talked with Paul about the problems he’s having. (It was good that he spoke directly with her – rather than my talking with her – because he can give her a much more accurate and detailed description of what’s going on with his belly than I ever could.) They discussed a couple of things that we might try: switching to a different formula that she says is usually very well tolerated, and starting to use a pump, which would give Paul better control over his feeding rate than he has with the gravity-feed bags (with their cheap plastic control valves) that he’s using now. Judy said that she’d call Carol tomorrow to discuss this with her, and would then call Paul again.

At about 6:45 p.m., Carol returned Paul’s call. She said that she’d left a message for Judy, but hadn’t heard back from her, so Paul filled her in on the conversation that he’d had with Judy. I think he also told her a bit about the physical therapy appointment last week. He told her that he needs help with working out the problems he’s having with food, because he’s really feeling drained. Carol said she’d talk with Judy and call Paul tomorrow.

So, Paul should hear from both Judy and Carol tomorrow, and some sort of change should occur in the regimen… and we really, really, really hope it will make things better.

In closing, a question: what do you use for any upset tummy? We’re taking suggestions (liquids only, of course).

Worn out

(For what it’s worth, I’m passing up the opportunity to write a post about the E-bay auction for tin-foil hats for your pet, to protect them from Government Mind Probes. As far as I’m concerned, the Gubmint is welcome to all it can get out of our cats’ minds, and besides, there have been enough cat entries lately. If you need the link, I can email it to you.)

I’ve been doing the massaging of my scars, and the neck stretching exercises. There is improvement happening, but it’s small.

It’s not really enough to offset the bouts of despair I’m feeling, struggling with the feeding, the fatigue and the pains. It’s worse right now, because I didn’t sleep well last night, and that adds an extra level of “tired” to my background fatigue. I’m also behind on calories today, and my stomach is a burbling cauldron at the moment, and I don’t know what I’m going to do about that. It’s frustrating because things were going pretty well until late afternoon. Then one meal of something that usually goes down smoothly knocked everything off the track. (I hate how unpredictable this all is.)

I feel stretched pretty thin. Tomorrow I’ll be calling the folks at UW, because this really isn’t sustainable. I don’t feel confident that they have anything to offer me, but I need help. This isn’t working, not really.

Now I’m going to try having some juice, hope it doesn’t hurt too badly, try to take my evening meds, and get some sleep. Let’s hope I get more rest than last night.