January 5 – January 19

Ever feel like you’re becoming numb with your feelings? I feel that way sometimes with Mike. I’ve learned to sometimes respond to his moods of being angry or moody with simple nods of my head and a few “uh huh’s” and “sure, dear’s” tossed in, rather than argue or even offer an intelligent response. That would seem easy, yes? Well, unfortunately the answer is no -it’s so hard I can’t even describe it.

There are times when Mike barks his response at me about simple things such as my asking how he’s feeling in the morning (“how the hell am I supposed to know, I just woke up”), or would you like a beverage and if so, coffee, tea?, (“I don’t know, pick one, whatever, I don’t know, I don’t care”).

If I don’t ask the questions though, then I run the risk of listening to him make heavy sighs about how he’d really like some coffee but oh, this hurts or that hurts so I can’t do it…follow? Reminds me of that phrase, damned if you do, damned if you don’t.

We have had some really, good, ‘normal’ days. Those are amazingly precious and I try to remind myself of those days when he’s having a crappy one. But it’s so freakin’ hard. I compartmentalize my feelings as much as possible but I can only tamp them down so much before I start feeling really fragile. I used to cry more, in the beginning. But now only once in a while. A great while. But now with my health issues it’s getting harder to rein in my reactions about everything.

Speaking of which. The doctor performed an endometrial biopsy to test for cancer cells, it’s his way of crossing his i’s and dotting his t’s before performing whichever option I choose to deal with my uterine fibroids/frequent periods. So far unless he can convince me otherwise, I’m choosing a hysterectomy – as noted in the earlier post I’m okay with letting my uterus go.

When I talked to the doctor last week he told me that he had gotten enough of a sample from the cervix during that procedure to determine 100% there aren’t any cancerous cells there, but he didn’t get enough of the cells in the uterus to be that confident. Because I was in such discomfort when he did that in the office, he doesn’t want to try that again. Instead he wants to do a D&C next Tuesday, the 26th. If all goes well with those biopsy results, then he’ll schedule the hysterectomy in February. At least that’s the plan as of now.

So now I’m working to get as far ahead in my classes as possible so that I’m able to recover without that added stress. I’ll already have the stress of taking care of Mike and I just can’t have both. At least not 100% of both.

Thankfully, BW has been there for me. Probably more than he should be – he has a situation of his own that he’s working through. But I feel that’s why we’ve bonded, we understand each other because we’ve been in each other’s shoes, it’s not just ‘talk’ with us, we really do get what the other is going through. We can bitch and moan about it all and it’s OK, we don’t get scared off from the conversations, it helps us both. So thank you BW, you are my best boy bud. I could not have gotten through this past year without you, hugs and love to you.

 

December 4, 2009

Just as I suspected, Mike overdid it yesterday. He was pretty tired and didn’t do much of anything all day. He went to bed tonight at 8:30pm which is about 2 hours earlier than normal. That means that I’m in the bedroom or office until I go to bed. The office holds zero appeal because it needs to be tidied and organized and that’s just not what I want to be doing before I go to bed. I’d hoped to do some sewing but the machine would make too much noise. Sigh…

He really needs to work on getting well enough so he can sleep in the bedroom, so I can at least move around the rest of the house quietly when he does this instead of being stuck in one room. The house isn’t very big and the living room where he’s convalescing is within earshot of the dining room, the kitchen and the basement stairwell (there’s no door to the actual basement). Not to mention within feet of the bedroom so even if I had a tv in here it would have to be on pretty low.

Yes, I’m whining. I’m feeling a bit entitled today.

I had a doctor appointment this afternoon and out of that came a need to have a diagnostic mammogram – medical jargon for having a test that’s more than just getting the boobies squished. They’ll do an ultrasound (and something else, I don’t recall) as well – there’s been some tenderness in my right breast that sometimes radiates up towards my shoulder, for a few months now. But it comes and goes so I ignored it, attributing it to stress. But then I realized at the same time my periods have become very irregular – 2 a month a couple of times, and rather than 29 or 30 days in between, they’ve become 26, then 19, then 27, then 18 and now just 15 days since my last one.

I’ll be scheduling an appointment for a PAP next week and we’ll see what comes out of that, the doctor said there could be a cyst or my irregularity could be menopause, he just can’t say until we have the PAP and blood drawn. Which we did today. They’ll check my FSH (follicle stimulating hormone) and LH (luteinizing hormone) which if these are elevated, means I could be moving into menopause (I’m 46 1/2), plus they’ll review my thyroid results and check to see if I’m anemic. I strongly doubt it’s my thyroid and having seen what the symptoms are of being anemic, I think that can be ruled out too.

I have to admit when I told Mike about all this his reaction wasn’t that of a terribly concerned person. I knew why before I asked him to tell me but it still frustrates me. His line of thinking is that I have no information or results at this time to base or form any emotion around.

I didn’t tell him this but I think that’s bullcrap. I have discomfort, I have something going on in my body which for the last 33 years of having periods, has been more regular than a clock and I’ve never had a problem with a breast exam before. I’m human and after everything we’ve been through over the last year, I’m entitled to be a little worried about something other than him. I’ve become somewhat numb and don’t always have a lot of emotions, initially, around hearing about his latest test results for this or that – he’s terminal – it’s expected.

But this is me and not him, and if – God forbid – it did turn out to be something drastic, how would I take care of the both of us? So while yes, I agree that to worry about something so much you can’t do or get anything else done is quite silly at this point, I can’t ignore the fact that something is wrong that needs to be fixed.

I’m not predicting or even remotely thinking it’s cancer (no more cancer allowed in my world, two family members and one best friend is enough!), I’m thinking more along the lines of something simple that needs a quick little procedure to fix. Besides, I don’t have time for anything lengthy – I have another semester of school and then will be looking for a new job to enjoy for the next half of my life.

 

December 2, 2009

I didn’t do any further Christmas decorating today, wasn’t exactly in the mood. Mike pissed me off today. Or rather, the situation as it has been for months reached a breaking point for me.

A very good friend of mine said something to me the other day, to the effect of “How are you not spinning out of control with everything you have to deal with, your husband’s cancer, school, your mother’s cancer (mom has b-cell lymphoma, she’ll recover but still…), and your friend’s cancer (melanoma – don’t recall what her prognosis is right now, I think my brain is full)?” My short response? I blog.

However, I realized later after the conversation that while blogging is incredibly cathartic, it doesn’t release the physical feelings from pent-up frustration and emotions that are usually righthereinfrontofmyface – I’ve gotten pretty good at compartmentalizing and ignoring everything. Or I had until today.

This morning I was doing homework in the dining room which is adjacent to the living room where Mike sleeps. By the time it was 10:30am he still hadn’t reached sitting position and was clearly perfectly comfortable staying asleep, until the last moment before the home care nurse was to arrive. I decided I wasn’t having that.

I went over to him and said he needed to take his pills, he was off-schedule now because he didn’t take his first round when he should have and I needed him ready before I left for school. It took me another hour and a half, which included me crying and sniveling, to try to explain the following:

1. Sleeping for 12 hours as he had to that point since last night is TO ME a bad thing. This worries me because that kind of sleeping in the past, has tended to turn into bad things. Like episodes in the hospital or was the result of many hours in pain from the femur mets before he had surgery. Sort of like Pavlov’s Dog, I’ve become conditioned to think too much sleep is a bad thing for him which equates to hell for both of us.
2. I CANNOT do everything. I’m behind on laundry (actually – this isn’t anything new as I hate doing it, ha ha!), I expected to have all the Christmas decorations done by now, the kitchen is messy, I’m constantly fetching things for him because he can’t or won’t, etc. Truthfully – I’m half the fault on the fetching. But he certainly could say in response to my asking if wanted me to bring him a yogurt, “No thanks, I’ll come in and get it myself.”.
3. I WILL NOT do everything anymore. He is perfectly capable of giving himself his medications. In the past and up until today, I was doing it because he had been taking so many Oxycodone’s and Oxycontin’s that there was no way in hell I was going to just hand him the bottles. Can you say “accidental overdose”? But he’s beyond that now. He is also perfectly capable of using the walker and going into the kitchen to get food and drink (um, not coffee though, no burns allowed). He is also perfectly capable of making and noting down his own doctor appointments.

What we’ve agreed to do to deal with these few seemingly minor (but oh so NOT minor) issues is the following:

1. In the U.S. our prescription bottles have caps that can be put on one of two ways, child-proof or non-child-proof (aka: easy to open). I have turned the prescription bottle caps over on each bottle and attached them in such a way so they are NOT child-proof and put a label on top in dark ink indicating what the medication is. I also labeled the bottles themselves in large print to make it easier to see the name of it. The print on the bottles is so small that we both have a hard time seeing it so this is helpful just in general.
2. All medications are in an open plastic container (no lid so he can see at a glance what’s there) all lined up. Starting tomorrow there will also be a printed list in the container that he has to review and use every day that has the names of the meds, time of day to take them, quantity to take, and check boxes that he will check indicating when he’s taken his pills.
3. I am no longer his secretary – I bought him a monthly calendar with large areas where he will note when he has an appointment, which doctor, what time, what for, and who is bringing him there. He’ll also update it with the physical therapist appointments and their names, dates, times, etc.
4. I also bought him a two-pocket folder to hold loose papers, appointment cards, phone numbers, etc., and two spiral notebooks of lined paper to write whatever he’d like in them, such as reminders to bring list of meds to an appointment to have me print out a new med checklist, whatever he needs to use it for. It will be especially helpful to take notes if I can’t be at an appointment (one of the two is a little one he can put in his pocket and bring with him). I may have a difficult time later deciphering his handwriting but at least he’s involved with his treatment and I’m not doing it all. I actually think he may start feeling better by virtue of the fact he has to truly participate in his treatment and not be so passive.

Talk about a big fricking sigh of relief for both of us when we were done talking – mostly for me and frankly, that’s what I need right now, desperately. See, last night in class at school I didn’t realize how much all of this was bothering me (or for that matter WHAT was bothering me) until I finished the exam and thought – I didn’t get an A this time. I just know I didn’t. Because of everything I’ve been doing for Mike, I didn’t study like I usually do. I should have had that information down cold, I didn’t. But we’ve come up with solutions to our problems and so it’s time to move on and do great on the last two exams over the next two weeks. I won’t let just one get me down, it’s not worth it.

Speaking of school, here’s a bit of humor for the day. I go to an inner-city community college (cheap tuition plus easily, accessible public transportation to/from) where it’s not uncommon for students to look like they’re in their pajamas and slippers. That’s actually better than what some of the others wear, but that’s a subject for another day.

Anyway, I left the house today to go to school, took about 15 steps and realized I had MY slippers on. I went back in the house to change and Mike said “You would have fit right in!”.

I love you, Mike.