Darkness & Isolation

I feel I am sinking into a dark and isolated place.

I feel depression's icy fingers around my throat.

I see that I am also feeling very dramatic. I am depressed, however, and feel the need to unload it on you five.

I thought I was over being forced to change oncologists, but I've shed some tears again the past couple of days over it. He wasn't perfect. His office was FAR from perfect. But he knew me, and I knew him. I knew that I could push back on things I didn't want to do, and that it was okay to cry in front of him. He knew I could cry and laugh at the same time, and he knew how scary my entrance into the metastatic world was back in 2009 with the whole hospital/almost dying thing. He knew my file because he is the one who wrote it.

I woke up Friday morning in such pain. I hadn't slept but about 3 hrs the night before, so that, coupled with the pain, was more than I could push through to get dressed and drive across town to have my blood drawn. So I called in tears to cancel. I'm not getting any warm fuzzies from the front desk at the new office, and I didn't have the presence of mind to ask that the nurse call me back about rescheduling. Insomnia/lack of sleep are the fastest route to "over-the-edge" for me. 

I would cave so quickly in the MI-5 (Spooks) torture scenario involving sleep deprivation. I'd turn into a raging, sobbing lunatic, and they'd either shoot me or chuck me off  a cliff themselves.

So I've only so far had one visit to this new oncology office. Part of me fears it is too good to be true.

Maybe I watch too many movies, but it feels like one of those scenarios where something seems really good going in, but once you've committed, you find out they expect you to kill babies and worship the devil.

Okay, I definitely watch too many movies. But think back to school days. It's like you've been at the same school your whole life. You start high school with the same people. You know the grounds, you know the routine, you know where to sit at lunch. Then your parents up and move and force you to start over, with no warning, in a brand new school, new school district, new town. New friends, new teachers, new administrators, new policies.

I feel adrift, still floating in the unfamiliar.

And something has got to give with this pain. Time to stop watching it, time to stop down-playing it, time to stop avoiding scans, and time for one of my doctors to take the reins and figure it the hell out. I meant not to let myself get to this point again. Last time I gritted my teeth until it became unbearable, I ended up in the hospital/torture chamber/hell that made it even worse.

I have a follow-up with the radiation oncologist on Wednesday. Same time of day as the church meeting I couldn't get up and dressed for today. Maybe I'll go to bed with my clothes on, so I can just get up and go. I don't know why I need this follow-up with her. It's been six months since the last one. Almost a year since my last radiation treatment. And seriously, I should probably go in having just had scans. I did have a PET in December, but it feels like there have been changes. Maybe the problems need an MRI to show up.

I feel  like no one wants to be my go-to for the non-cancerous, but probably caused by the cancer, problems that I have with my spine and hips. I feel like I need to bring another specialist into the mix, because my current specialists aren't broad enough, and my PCP is too broad. What is a doctor who specializes in bones and spines and hips? I know there are orthopedic surgeons, but I don't need surgery. Is that who I need? Are they just orthopedists, too, and not solely surgeons?

And don't they spell it differently in Great Britain? Orthopaedic?

Back to my dark place of gloomy isolation, which was really my reason for logging on this morning. When I was working, I saw people every day. I had a core group of people who were my micro-society. I actually used to have some friends too, for actual socializing. Since the diagnosis of Stage IV, since I've stopped working, since I have cancer that will kill me and attitude to go with it, I have no people. My daily micro-society is gone. Going out for fun times is over. Getting invited out for fun times is over. My world is reduced to my immediate extended family, whom I rarely see, and who almost never come to my house, my son, who lives with me, my cat, one neighbor to whom I speak, 1 friend who visits, and church.

My Ward (i.e. church congregation) is my entire social and societal world, in that they are the only group of more than 2 people I see on a regular basis. This pain has made it difficult for me to get to meetings. Between that and not wanting to risk the flu with my slightly suppressed blood counts, I didn't make it out from Christmas until last week, and then again today I did not make it. Getting dressed and ready by myself is difficult, because getting from one end of the bedroom to the other is difficult, and that is not all that is entailed in getting up, dressed and ready to leave the house. Last week when I went, I sat out in the foyer and only stayed for the main worship service, avoiding crowds, small rooms and potential virus-carriers.

Don't you just hate it when the point of a blog is clearly in your mind as you use the bathroom and get dressed, but when you get to the computer and start typing, it somehow gets lost in the whining and complaining?

I think part of my point is that missing church is contributing to my feelings of isolation of late.

I don't know why this definite depression (not just the lurking, simmering, always just below the surface depression of usual) has reared it's head. It seems to come with difficulty with sleep and an increase in RLS symptoms. I take the only antidepressant we found that did NOT aggravate the RLS, so upping the dose is out of the question, as is changing or adding to.

 So what were my points? I'm depressed & my pain is worse. I have a new oncologist who seems nice,

but all is not back in the groove.

Ch-Ch-Ch-Ch-Changes...

I know the five of you who read my blog are waiting at the edges of your collective seats for more news of my doctor dilemma. After stewing and pouting for an additional two weeks, I think it is time to face the changes.

The stream of warm impermanence...

I'm pondering that for a moment here. The stream of warm impermanence. Yes, my heart is still mourning the loss of my dear Dr. P. And no, I haven't talked to him. That seems to be the pattern for men I love...no good-bye, no closure. I'm putting it in a box though, and tucking it up on a shelf. I have to move on.

I had a consult with the new oncologist. I don't know what a consult is supposed to be, this felt more like an appointment, but that's okay. The office in general feels far more patient-friendly. The nursing assistant (?) who conducted me to the exam room and took my vitals recognized me and turns out she used to work where I had my initial radiation done in 2006 and was the one who would call my name and conduct me to the torture. Very sweet that she recognized me. It took a minute for the synapses to connect, but I finally remembered her. She was the best part of that office and experience.

Side bar: the place where I did my initial radiation was an office of the corporation with which my first oncologist's practice merged, and for whom my new doctor used to work.

I say corporation rather than practice, because they are a business first, and doctors later.

Turns out this sentiment is shared at the new office. Let's code name it Flour Wings. The new doctor, a female doctor, Dr. O. (not Oz; many more letters) is very personable and nice. She spent quite a long time listening to my cancer story from the beginning, and listening to my current aches, and my gripes about the old office. She said go ahead and start the next Xeloda cycle (which I had on hand already) and they would get it all sorted out with the insurance and where I should fill it (Xeloda has been dropped from several insurance companies' prescription formularies this year. I know. Don't get me started.)

Then they drew my blood FROM MY PORT and will do so on a regular basis. I'm waiting for a call back with my tumor marker numbers today. The nurse who accessed my port was formerly with Banner Desert (the hospital in front of which I would rather die than be admitted again), and has been with Dr. O, through very serendipitous circumstances, for 8 years (I think that's how long she said). She's very kind also. ("If you've got a port, use it!" was her comment on blood work and ports.)

The office seemed to echo my feelings about my big issues; the machine of the other corporation (we'll call them Ironworks, and my old onc's office before the merger we'll call Dessert Onc, because let's face it, my onc was yummy), drawing blood in the office, patients being the reason they are there. I didn't ask the doctor some things that I wanted to, because I hadn't made a list and I am mentally very easily side-tracked. I have another blood draw in two weeks and will ask the nurse, and then ask the doctor when I see her again two weeks after that. PET scan probably after that.

I am just curious to hear their approach to metastatic cancer, stage IV, death in the cards from the reason for which they are treating me. I declined to see a doctor at the big Cancer Factory in town because I had met her previously at an event and found her to be very pink ribbon / cure / denial -ish. I suppose I should have met her and seen the set up also, but I was ticked that my new insurance's list of doctors online is not up to date, and I'm SURE that the Cancer Factory must have other doctors besides this one D.O. who treat breast cancer, possibly even someone with more experience in metastaticness. Metastaticity. 

I left the appointment at Flour Wings feeling like I had really found a good fit, that this was the place to embrace and feel cared for. And then another part of me piped up with how things that seem so good are often too good to be true, that the curtain comes down upon further investigation. All I can do is continue to have faith in the very high recommendation I received for them from a friend and current patient who is a retired nurse, and see how it goes. It's not like I signed a contract. It's just that after the emotional beating I've taken over the past year with the old office, my jury is hesitant to hand in the verdict just yet.

So I'm going backward through the alphabet of oncologists, from Dr. P to Dr. O. I don't know if there is a Dr. N out there, so I hope this fit holds up through the wash.

How do you "interview" a new doctor?

What questions should I have in mind to ask them next time?