Sunday, February 3, 2013

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.


Anonymous said...

Sweetie, could you add a counselor to your mix? Just someone you could talk these feelings through with since the meds aren't enough (they rarely are enough). I have a wonderful counselor that helps me deal with a lot.

Also, would you like to be pen pals? If so, email me ( your address and I promise I'll write.

XOXO, Acacia

Anonymous said...

I am always here, glad to email or talk. I'd even come to visit.My phon is 480-628-1346 and email is We need to get you out of this funk. I know an excellent counselor who I saw for several months after being diagnosed stage 4. I'll send you her number if you want. She is at Warner asfend Limdsay.
I want to help. Tell me what to do. It would be good for both of us!

Hugs, Marsha

The Dirty Pink Underbelly said...

OH! I forgot to add that part of what I was crying over is that I DO see a counselor! I feel we get no where, but I feel he has done so much for me (co-pay forgiveness etc) that i can't leave him. And he went through all the trouble of getting qualified through my insurance this year. I've struggled wtih this for quite some time.

Thank you Ladies.

Marsha, send me her name and I'll try to see if my insurance accepts her.

Acacia, i'm on Facebook as well, are you?

Nancy's Point said...

I'm sorry you are feeling so depressed, Shelli. I would say if you feel you and the counselor are going nowhere maybe it's time for a switch there too? Of course, only you can make that call. And can you ask one of your church friends to call on you from time to time? I know it's hard to ask...Also, have you considered adding a palliative doctor to your team to address your pain issues? If I've over-stepped, I apologize. And one last thing, Shelli, expressing your true feelings is NOT whining. Thanks for sharing. xoxo

Anonymous said...

I was there once. I can relate. I was also so sleep deprived and actually had sever apnea going on but it wasn't diagnosed until 2 years ago! It definitely added to my depression and just plain nuttiness. That made it so much harder to relate to people. I would suggest seeing a counselor. One who you can really trust and pour your heart out to. It made such a difference and was a lifeline to walking through the darkness.

Anonymous said...

Just saw this thread of comments. I agree with the comment to change counselors. I did a couple times and finally found the one who was the best for me! It is imperative to feel a 'click' with that person and not feel obligated to them as you are in a position of being a self-advocate. Tapping into your strength as an individual, know what you need and want is also a great lifter to depression. I encourage you to keep stepping forward. This too shall pass.

The Accidental Amazon said...

Shelli, it strikes me that, on top of everything else, you have grief piled onto the mess -- grief over having to end the relationship you had with your last onc. It's not a small thing. It's a huge thing. This person was there for you through so much. He was someone you could depend on, who understood you, knew your history. And now, it's over. Snap. Just like that. A craptastic ending and a less than stellar transition because of the crap way our health system operates. It makes sense to me that this would end up feeling like the last damn straw.

Seems to me that crying is the appropriate response to this bat excrement.

And BTW, by my count, there are now six of us here. More than five. And we care. I care.

xoxo, Kathi

tccomments2013 said...

dear shelli,

SEE how many people love you and care for you??!! me, too. i am so sorry for all you are going through and know it is complicated. i don't hear you whining, i hear you reaching out, and that's a very good thing.

sometimes climbing a steep mountain of shit can only be done with baby steps. maybe this post was that first step. and maybe the feed back you are receiving from such wonderful, kind and dear friends will help you take the next one. you DESERVE to have all the best support and help with every single thing that is making your struggle so painful. please know i am here, and you can e-mail me anytime at - i would be honored to be able to help you in any way. and KEEP WRITING; telling your story is therapy for you, and helps others who are suffering because you write so truthfully.

love and gentle hugs,

karen, TC

Carolyn said...

I would like to add my small voice to your wonderful list of friends and readers who would like to help in some way. I also don't want to overstep, but agree that perhaps a palliative caregiver may help. I have one, she's lovely. I know I don't "know" you, but I care about you and do understand the complexities involved with this unwelcome shit show... I just wish I had some answers.

gentle hugs from Canada...
love to you,

The Dirty Pink Underbelly said...

Kathi, you were so right; I thought I was fine but I AM still grieving the loss of my dear oncologist. My friend who is also his patient talked to him about me again, and he was afraid that I was mad at HIM for all this. She told him I don't blame him. I said maybe I'd write him a letter at least, maybe some closure on my side. For crying out loud, this is dr/patient, not Jr High! But I was/am very attached to the sweet man after 7 yrs.

Thank you all for your input and concern. No one has "over-stepped", really, don't worry about that with me, unless you want to tell me to be more positive. haha.

Love you all!