Please Forgive the Need for Support and This Very Long Blog

[djmurray]

Disclaimer -- this is a very long blog -- those of you who know me are excused if you don't want to read such a long rant, and those of you who don't know me, the story is long and the bottom line is I'm very deeply depressed, but I am keeping my quit.  Of course you can read on, but I'll understand if you don't.

It has been a long time since I've gotten on here and vented.  I am grateful for this group with whom I can be open and honest.  My depression is deepening by each day, and for those of you who know me I am hoping some support can be received.  I will be celebrating three years smoke-free as of New Years Eve, which will be here before we know it.  I am not threatening to lose my quit.  I have assured those who know what's happening that I will not hurt myself in any way -- Of course I will not lose my quit and taking my life would only deeply hurt the ones I hold dear, my sister, my children, my grandchildren, those who know me from EX, those with whom I've worked, the doctors I've seen and hold in dear esteem.  So with those assurances I am going to press on, because right now I have nowhere to turn for the support I need.

My sister Marsha has lung cancer.  She also has emphysema and pulmonary fibrosis.  The background picture was taken in her senior year of high school. Her lungs are hopelessly fragile and compromised.  My sister and I have always been close, we speak on the phone virtually every day.  We've laughed together over more than 60 years we've been together.  Whether we're at close proximity (as we were when we were growing up and then living as young adults) or while  Marsha spent 10 years (from her 29th year to her 39th year) in San Francisco while I stayed in Virginia.  When she called in 1989 and needed me I flew out the next day and we drove her car and worldly belongings back here on an adventurous 5-day road trip.  In about 2004 she moved to Georgia, where my oldest daughter Jen lived with her husband and little kids.  Eventually she briefly came back to Virginia, but then moved to Pittsburgh 6 years ago where she currently resides.  I've managed to see her three or four times a year.  In the beginning of the summer, because of her Pulmonary Fibrosis, her pulmonologist wanted her to have a CAT Scan done every three months.  Fortunately, the University of Pittsburgh Medical System) which has numerous systems through the greater Pittsburgh area, provides all services to Marsha free of charge. In the spring her CAT Scan showed a suspicious nodule in her lung, so she went in for a biopsy. I went up for the biopsy.  It came back in late April or early May as okay.  We felt relieved and good.  Three months later, tho, it had grown rapidly and a surgical intervention was needed.  They removed the growing nodule and the lymph glands around it.  After surgery Marsha was told she was good to go, no oncologist was needed; they got it all.  Marsha was then going to have an appointment with her pulmonologist.  It had to be postponed for a couple of weeks, though, because Marsha had to go into the hospital for five days because she was so backed up and nothing that she did at home worked.  Because of the hospitalization she had to reset her pulmonologist's appointment which deferred it for about three weeks.  While Marsha was miserable and still in considerable pain as a result of the 3-hour extreme rib-spreading they'd had to do for her surgery, she was very relieved about the surgical outcome.

She finally met with her pulmonologist in late October.  That's when everything fell apart.  It turns out someone (I'm not sure who) decided to send the biopsy to a pulmonary fibrosis & oncologist specialist, who determined that the malignancy had spread to the lining of her lung and she had to undergo chemotherapy immediately.   She saw her pulmonologist on Wednesday, she got into see the oncologist on Friday of that week and immediately on Monday Marsha had her first chemotherapy.  She was (and so was I) angry at her pulmonologist for waiting to tell her what had changed and what she needed to do.  Three weeks went by with Marsha thinking all is well while the malignancy in the lining of her lung was being unchecked.

I am still working (more about that later in this lengthy tome) so while I wasn't able to get to Pittsburgh to take her to her first chemo, I got there a few days later and tried to do what I could for her.  Her first chemo was 10/30, and her dearest friend in her building took her to it, although they were late because Betty Lou (her friend) is just about 75 and is leery of driving in the city.  The Hillman Cancer Center is in one of the urban areas of Pittsburgh (Squirrel Hill, Oakland or Shadyside, I'm not sure which) Her chemotherapy takes all day because they hydrate her first for over an hour, they infuse her with anti-nausea medication intravenously, then they take about 2-3 hours for the first drug, another hour of saline, then another 2-3 hours of the second medication, and finally another hour of saline hydration.  While I was up there I did grocery shopping after we brainstormed what she could consider eating and loaded up on all of it.  I put money in her checking account and agreed to pay her car payment each month.  Marsha has been on disability for the six years she's been in Pgh. and her rent keeps going up while her disability payment has made only a minuscule increase.  I don't want her to worry over finances, so I'm doing my best to keep that on an even financial keel. 

So in the very beginning of November I was with her for about four days.  Her next chemo was scheduled for November 20, and I planned to drive up on Sunday so I could take her to her chemo, but then the weather report predicted snow in the mountains on the very day I was going to drive up.  She and I had made an agreement that neither of us would drive in the snow.  So I couldn't go up on Sunday.  Instead, I went on Monday, and arrived at her place before she even got home. When I used the restroom, there was a cigarette butt in the toilet.  My heart sank.

Marsha was in reasonably decent spirits when they got home, but she was at her wit's end.  My normally funny and positive sister couldn't even talk about the treatment or the trip to and from the chemo.  She knew the next few days were going to get worse and worse.  Oh, by the way, the other thing I missed on Sunday was her getting her head shaved.  Her hair was coming out in clumps, so it was time.  I felt really bad that I couldn't be there for it. I had even volunteered to shave my head, but Marsha insisted that I don't do it.

She didn't want to eat anything and I saw that most of the items I'd gotten for her on my last trip were uneaten.  She had a little soup, though.  On Tuesday morning she was doing okay, and we needed to go back to the Hillman Center because she had left her notebook there which contained all of her cancer information and a prescription.  So we made that the first thing we did on Tuesday.  She was still somewhat unsure about how to get there, but we got there.  Both of our nerves were pretty much shot.  I was lugging around my useless oxygen (more about this later, as well), and she was trying to find something to wear on her head so it would stay warm and look halfway nice.  She was very prickly as I and the sales woman tried to help her, and suffice it to say she got pricklier and pricklier from there.  She wanted to go to lunch at a Chinese restaurant we frequented as we grew up in Pgh.  But getting from the Hillman Center to downtown Pgh. was a challenge, and then we wandered around a bit, my nerves were shattering, as were hers.  We found the restaurant; there was no place to park at all, and a couple of blocks away we found a lot that was $20 for up to 15 minutes!  Marsha ended up screaming and cussing at the very rude lot attendant, and I thought my head was going to burst.  It wasn't that I thought he was right; he wasn't.  But Marsha's top blew off.  We gave it up, drove back to the suburbs where her apartment is, and stopped at a hamburger restaurant chain, thank god.

I had to work remotely from there per my manager, and I was very late signing on because of the very long trip I hadn't anticipated. Marsha took a nap as I worked for a few hours.  When she got back up she was in an even worse mood.  Anything I said aggravated her.  I tried to modify my voice to keep it mellow, but she kept telling me to keep it down.  I gave her space with her cat and stayed in the dining room and worked.  In the meantime, she got up and went into the bathroom a couple of times and was in there for quite a while.  I noticed she had stuffed a towel at the bottom of the door.  She was smoking.

This breaks my heart and frankly makes me angry.  They are putting poison in her system to kill the cancer; every puff she takes on a cigarette counters that poison and is its own form of poison.  But I can't keep her quit (if she ever had one) and when I mentioned it she became very defensive and angry.  I will not say anything further, but I do have to deal with my own feelings.  As the days have gone by Marsha has felt worse and worse and has become pricklier.  She's angry at the world.  I told her I would come up and take her for her next chemo session on December 11, and that I wanted to be there on Christmas, which didn't have to be anything special -- I just wanted to be with her.  I've learned through my daughter that Marsha thinks I've put too much pressure on her, so I've explained to her that I will respect whatever she wants.  I had also suggested that I would come to Pgh and pick her up, we could come back to Virginia and spend the night at my place, and then on Christmas day take her to Fredricksburg to see her niece Katy and grandson Riley for an hour or so, and then take her down to Richmond to see her other niece Jenny and my grandchildren Jason & Kennedy.  I told her she could let me know the day before if it was something she wanted to do.  But my simply having mentioned it as a gentle suggestion upset her and made her feel stressed.  I've tried to explain to her that she is not hurting my feelings, and that I will do whatever she wants.  On the phone tonight she pretty much told me she wasn't sure she wouldn't want me to come up for her chemo in December or for Christmas.  I will accept that as well.  But my heart is broken because of it.

I don't know if it's the stress or the depression, but my breathing has gotten horrible.  I can barely walk a block without panting.  I moved up my own pulmonologist appointment to next Monday because I'm either in an exacerbation of my COPD  or my COPD has worsened.  I need to get my oxygen supplier changed to the one that has the small, portable condenser.  Right now I've been dragging around heavy canisters that are worth 4 hours or 2 hours, but when they're empty they have to be returned to the company.  Traveling to Pgh. means I have to drag those awful canisters, and connect a gauge (which they only gave me one, so I have to set up each canister).  At any rate, I won't go on and on any more about this, but I need to deal with this breathing problem which isn't helped much by my Spriva, Advair and rescue inhaler.  And the second hand smoke at Marsha's doesn't help either.

On top of everything else, I've been cut back to 20 hours per week at work and I've lost all my benefits.  I was making mistakes and forgetting things, and my manager (who I really love and respect) thought if I didn't have to handle proposals (with short turnaround deadlines) it would relieve the stress and I could just manage contracts and act as a mentor to new and more junior contracts administrators.  Having to be available every day for four hours is difficult in my current state however.  I'm getting rid of all my work clothes and donating them.  I don't feel like getting dressed up anymore.  I don't even feel like going to work at all.  My depression is debilitating at this point.  I intended to go to work today, but couldn't.  I did have an appointment with my primary physician at 2:30 today and I mentioned during my weepy discussion with her that when I was most tempted to smoke during the early days of my quit, the last bastion was knowing I would have to be honest with my EX friends, and couldn't bear the idea of admitting I lost my quit.  I hasten to tell you all that I am not going to hurt myself -- I wouldn't do that to my children, my grandchildren, my sister, the people I work with, you all, and my doctors.  My dear doctor listened to me today and said "Work toward the day when you will not hurt yourself for yourself, since you are a good person and you deserve to live."  So, my dear EX friends, please do not call 911.  I'll make it through.  I am going to contact the American Cancer Society to see what support they can provide and I'm adding an antidepressant to my medications.  Oh, and that's the other thing that's driving me down -- Medicare -- I'm paying a penalty for my income in 2016, so instead of having $134 deducted from my Social Security it will be a total of $267 per month.  My supplemental policy is $152 per month.  I won't have prescription coverage until 1/1/18, so the prescription I got today was supposed to be $148 but they found a coupon that got it down to $54.  I had to buy it, because I can barely manage going to work, cleaning my house, going grocery shopping, etc.  So I need a boost and I need it now.  Oh, by the way -- when I do get my prescription coverage the best we could find was a policy that will cost me $34 plus an additional $13 because of my previous income (total $47) so just my monthly premiums will be $466.  When I was working full time, my premium was $120 per month.  One of my necessary prescriptions I have to take if I'm working will cost me $113 every month.  My other med copays will total another $150.  I have no dental or vision coverage.  So my new healthcare outlay will be $729 per month.  It's insane, and depresses me deeply.

So I am sad about my sister (I'm the oldest and unless I'm run over by a bus I'll be the last.  We lost our brother 14 years ago at the age of 50). Unsettled by being taken back to part-time, the maze of Medicare enrollment, the penalty for having made a good living which I'm NOT making now.  I just don't feel like I belong anywhere.  I know politics has no place in our group, but the last year and the never ending drama of it has further dragged me down.  I've put on more weight and all I want to do is eat ice cream.  Blah, blah, blah.  Sorry this has gone on so long.  I just realized it's almost 1 a.m. and I do have to go to work tomorrow.  So, for those of you who have soldiered on to the end of this lengthy boo hoo, I appreciate you, and wish I had something better to write.