It’s all about curtains

Awhile ago my brother got it in his head that we needed curtains in our second floor apartment. I don’t really see the need since we are not overlooked from any side. My only concern is that it gets cold in the living room because that window has a draft.

But no, he went on and on about it, bought a sewing machine and got a book from the library about…yes, curtains!

He took measurements and found some fabric he liked on Ebay.

Everyday day, several times a day for about 2 weeks all he went on about was the absolute need for curtains…curtains, curtains, curtains!!!

I stalled and ignored and admittedly avoided the whole subject. I just couldn’t be bothered and didn’t see a need but recently have been trying to find things for him to do. he wants to help me but most of what he does-rearrange  the furniture, put hooks on my toothbrush…just annoys me.

So this week I asked him to take two carpets to the laundry mat which he eagerly did and I was really relieved to have one less thing to worry about. Building on that success I stopped at the fabric store and bought some curtain fabric that I could live with. I said we could start with the back window and if it goes well I’ll go back and get more.

He hasn’t touched the fabric all week…he completely lost interest in curtains.

Dysfunctional Family of the Y ear

You would think that having a terminally ill family member would bring us closer. Circle the wagons, rally the troops? or not…

I knew this was going south when I got an email from my brother Wednesday morning-the subject line was “Unbridled loathing”

The email began

I just went off on Nancy and inadvertently gave that whole wing of the family exactly what they wanted.

Nancy being our younger, delicate sister. He ended with

Then she sent me another, slightly more wordy email that enumerated all of the things that she’s sad she’ll never be able to do with me.  So I reminded her that I’m still alive.  She also said that if I want to know Ma’s phone number I should google her.

So I suggested that she and the entire Aurora Gang go fuck themselves.

Well then…glad to see those charm school lessons paid off…

He summed our family up with this pearl of wisdom

We each need more than anything to sit down and discuss our differences, about 1,000 hours of couch time and about a 1,000 more hours of meditation.  That’s just to avoid fucking suicide.

I couldn’t make this up

Father of the Year…NOT!

My brother has two daughters from two different marriages. Wife number one was a high school romance and daughter number one is almost 40 years old. He was apparently fooling around with wife #2 while still with wife #1…messy. Daughter #2 is in her early 30’s and just got married in June.

One of the first big disagreements I had with my brother was regarding child support. Wife #1, who I knew very well, went on to marry a nice Christian man who had custody of his 3 children and they went on to have two more children together. Big happy family! My brother however refused to pay child support because he insisted that his now ex wife would spend “his money” on “all the other kids”. I told him that knowing her I personally did not believe she would do that but also legally that is not a reason to just stop paying-I told him if he felt that strongly then he could buy my niece some new shoes or a winter coat or put the money in a joint account but he had to show some effort to support his daughter.

I insist that he spent most of his adult life nursing this grudge with wife #1 and avoiding work that may have been garnished to pay the child support. It all came back and bit him sharply in the ass when he was in China a few years ago and he attempted to renew his passport and they confiscated it until he coughed up $11k in back child support. Ouch!

He actually was more involved with daughter #2  mostly because he was unemployed (see above) and wife #2 never had more kids and hadn’t been cheated on so slightly less axe to grind.

Through the mysterious grapevine that is my family-my estranged sister, brother and mother have information that my brother is “dying”. Not sure how that happened, certainly did not come from me but that’s between them.

My nieces knew their father (who they refer to with his first name M) was back in the states. They rather bluntly expressed to my daughter that they had absolutely no desire to revisit that unfulfilling relationship.

Last week they were informed by my youngest brother that M is close to death. So out of the blue they were texting my daughter and me for the “real story”. I shared the facts and even a photo of him but I was clear that if they thought cancer had softened his razor sharp barbs and vindictiveness they would be sadly mistaken.

Daughter #1 wrote:

“Is he still a racist asshole who laughs at people who are in pain or is he better that that now he is dying?”

Um,  yes and no.

They offered me support-said I was a saint for taking care of him, that he’s in good hands and that if he gets “sappy” and asks for them maybe they would come see him. I would say he’s still a long way off from that as he informed me this week he took himself off his fentanyl patch and the pain is “not so bad”. He has repeatedly told me he is pushing this “death thing” out as far as he can. You would think this would include some major relationship mending? Or not….

Childhood memories

My brother is into week 2 of his 3rd cycle of chemotherapy. While bright and chipper and hiding out from the heat, he is skin and bones.

I can say this because he regularly appears in either a shirt and boxers with his skinny legs or shirtless with shorts that displays a distinct lack of body fat.

He is taking quite a few cans of feeding through his G tube everyday which I assume is part laziness and part difficulty swallowing.

He has laid off targeted criticism so I am able to be cordial and share some laughs.

In my recent break up with my long term “boyfriend” he commented more than once that I had been abused as a child (?) -he added that my brother confirmed it and it was okay he “got it”

I finally had a chance to bring that up to my brother-not saying that he had said that exactly but what could he have said that made my ex say get that impression?

My brother was genuinely puzzled and we discussed our shared and individual childhood experience because hey, maybe he knew something I didn’t.

Nope, we both agreed that however poor (financially)and later flawed our childhood was (our parents divorced at 17 years of marriage) 15 of those years were very happy and we felt very much loved.

We both agreed our early childhood was almost “idyllic”-full of music, art, creativity and all the hope of political change the 60’s/70’s had to offer.

In the end I was glad that I addressed that with my brother-it allowed us to share some happy memories.

 

Mail, Paranoia and CT Results

Got this when I arrived at work this morning

What’s going on with the mail at this address? I’ve had to get a PO Box because letters were disappearing and now Fed Ex says they can’t deliver here.

What the fuck are you talking about??? I replied

Nothing is “going on”. It’s a multi family house-they are wrong

Fuck sake, they deliver mail for tenants from 5 years ago!!!

Then what is the “right” solution to the problem of me not getting my mail?

deep breath….

I don’t know ask the post office, ask Fed ex. Tired of paranoid accusations. Nobody is taking your mail

I was thinking-nobody gives a shit about your fucking mail. Maybe you just don’t have any fucking mail!

They suggested I wait on the porch everyday for the delivery or get a post office box.

Really?? that’s the only option???

Then he dismisses it all as a minor irritation….grrrrrrr

Later in the day he texted me that the hospital called and told him “all his lesions are very much improved” according to his CT from Monday.

I still haven’t asked which lesions-the ones on his liver, the ones on his spine or maybe the grapefruit size mass on his neck is only tennis ball size now?

It’s good news for him but when you spend 90% of your time aggravating everyone around you it’s hard to be supportive. I know I’ll regret this some day but I am really out of compassion at the moment.

 

 

 

Hot summer with cancer

My brother backed out of our camping trip. afterward he said it was because he didn’t feel like traveling with my new ex boyfriend but I have no doubt that it was because I lost my temper and called him out on his selfish behavior.

Last week I reached my limit with my boyfriend-besides having some wonderful qualities and generally taking very good care of me after my surgery he has a very irritating superiority complex which turns verbally abusive at times.

That’s two men bullying me around…and I’m no fucking wallflower.

My brother is still sick-very sick with Stage 4 tongue cancer-Nothing has changed there. His second round of chemo was delayed 2 weeks but has been completed. He is thin, struggles to eat and can’t really get out much due to the sun and heat.

Now that I am back living with him the full extent of his life is becoming clear. He seems to want to chat but I am grieving the end of my relationship and not really in a shoot the shit kind of mood. I try to avoid coming home after work and hide in my room the rest of the night

Last Tuesday night, I came home and surprisingly my brother did not make a beeline to me as soon as I hit the door. I set up a new air conditioner and went to his room to show him the new equipment. I found him slumped in his chair almost unresponsive. He did get up and stumbled to the kitchen, slurred his words, looked like he was going to fall over. I spent the rest of the night waiting for the “thud” when he fell to the ground.

I assumed he doubled up on his pain meds-who can blame him?

His long period of near coma must have been very restful because he was up at 5.30 the next morning re-arranging the furniture! he came in my room about 6.45 with a full breakfast on a tray….very nice gesture but not well received.

On the next 3 days I came home from work to find the furniture re-arranged. I finally told him I am unnerved to come home and have things changed for no reason. I found some stuff in my son’s apartment and when I brought it back – my brother said “oh, you wanted that there?”

Argggghhhh! I do the same dance to accommodate everyone else’s preference but this is gradually coming to an end. Cancer or no Cancer!!

 

 

even sisters that are caregivers have limits

My brother has pretty much criticized every element of my life  since dropping into it unexpectedly 5 months ago. He has surveyed every inch of my home where he now lives alone in a two bedroom apartment….for free….and told me the water heater will need replacing soon, the water pressure sucks and it needs a new roof.

He has alienated 2 of my 3 children.

He has inaccurately and scathingly made assumptions about my behavior, actions and motivations. For example, I saw him last week fully 8 weeks after my surgery when he asked me if I was back to work yet. I nearly spit out my drink and said “Of course-I went back to work less than two weeks after my surgery” to which he shrugged and said “Oh, I thought you’ve been laying around on the sofa watching TV all this time”…..!!!!!????

I haven’t been able to figure out which came first- his obsessive lack of self monitoring or his social isolation. I think it’s all intertwined because every time he criticizes me I think -no wonder he is divorced 3 times and estranged from his 2 daughters.

I’m all for being honest but some of the things he says are really uncalled for-like he asked me what is wrong with my cat…..Why is she so fat? I’ve never seen a cat so fat and what is hanging off her belly? I’ve seen that on a cat that has just had a litter of kittens but what is wrong with her? Is she sick? She’s so fat…

It’s the repetitive, ongoing, obsessive comments that drive me crazy-

verb (used without object)perseverated, perseverating.

1.to repeat something insistently or redundantly:

to perseverate in reminding children of their responsibilities.

The last straw happened this week-My brother was all excited to apply for a medical cannabis card a few months ago. I helped him complete the paperwork and paid the fees. Then he got the letter that he was approved but no card yet. This is where his paranoia kicks in because even though he was bugging me to get pot from my boyfriend now its apparently too much to ask for him to get some really good stuff legally to pay BF back.

I asked my brother about the card a few times like over 2-3 weeks, I offered to call and see what the delay was because I anticipated based on his past behavior that he would be hounding me to death to find out where his card was. No, he replied that he was going to cut up his card into guitar picks when it comes and I should reconsider “my plot” to get access to it……….oh, really?

My response? FUCK YOU AND YOUR UNGRATEFUL ATTITUDE!!!

Barely spoken a word to him, exchanged a text/email since. The bottom line-and I guess I should say that I don’t care if he is dying of cancer anymore there are common rules of respect that apply to everyone-EVERYONE!

I did not say what I wanted to say which was I think you should look for other accommodations so my family can relax. I didn’t tell him that the reason he is dying alone is that he is such a squirrely, mean person. And I didn’t say that I don’t want to go camping with him next week….

 

 

It’s not what it seems

You might think that no posts means no news but actually it is a reflection of my exhaustion.

My brother completed his first round of chemo aimed at actually prolonging his life. When I spoke to the oncologist about two weeks ago she clarified that the first 6 weeks of radiation and chemo was just to shrink the massive tumor in his neck pressing on other vital structures such as his carotid artery.

“The plan” is to give him 6 cycles of chemo-each cycle is 3 medications over 3 weeks. It is expected to be pretty rough with a cumulative effect. It appears that chemo is a gauntlet where only the strongest (and luckiest) get to move on to the next round because there are lots of side effects and benchmarks that have to met.

My brother has basically failed after only one round. His second round has now been delayed two weeks in a row because his white cell count is low. White blood cells fight infection, the normal range is 4-10. That’s not a very wide range. Look around at all the humans in your vicinity-they all have WBC’s between 4-10. If you happen to have a family member with the flu their WBC’s might be elevated to 12? My brother’s WBC’s are 1.95. Technically that is neutropenia.

In the world of oncology that is not earth shattering, it is actually an expected side effect. The twist is that we-BF, Bro and I are planning to go to camping at the annual hippie fest in Vermont. Neutropenic patient with a trach, feeding tube, port catheter and pacemaker camping? What could possibly go wrong? Hmmmm…..cuts, bug bites, rashes, river water, generally questionable hygiene????

My brother is very opinionated and he didn’t hold back today when I questioned the test results that didn’t quite make sense to me. He kept saying his platelets (related to blood clotting) were low but saying it was his immune system…

Whatever it is that they measure before they give me chemo, there’s not enough of it for my immune system to function properly.  In fact, the nurse today said that if they went ahead with Day 1 today, the chemical they give me could reduce the effectiveness of my immune system to the point where I would have no immune system at all.

They decided that that is unsafe.

I reassured him that he doesn’t need to know everything about his treatment to which he shared this insight

An NP took about 15 minutes today and explained pacemaker values (the theory behind the numbers) to me and I was gobsmacked all to hell.  Usually I’m treated with all the consideration of a hog in a slaughterhouse by people who look at their workday and see only a long row of whiny meat puppets that seems to stretch on forever.  It’s not their fault, they just don’t have the time to get up close and personal.

From the mouths of patients to the ears of healthcare workers

 

The cancer rollercoaster

My brother has been so ridiculously optimistic through all of this. I feel both conflicted and guilty-I don’t want to squash his hope but somebody needs to be realistic here. Does anyone really survive T4N3M1 tongue cancer more than a year…or two max?

I just spoke with Dr. K and I guess I’m some kind of oncological wunderkind.  That’s great.  Wunderbar.  So keep your peepers peeled for my article in the New England Journal of Medicine.  I’m going to title it “The Man Who Kicked Cancer in the Balls and Ran Away Laughing”.

The next day  I spoke to Dr K and she addressed my concerns that either she was not being clear with him, he was not processing what she tells him or he was sugar coating everything for my benefit-she assured me that the exact word she used when talking to him was “incurable”. After his visit with his primary care MD I got a text~

Apparently unwilling to leave any parade unrained upon, Dr T hastened to explain that the masses in my mouth and neck are still there, they’re just smaller. And the average life expectancy for my type of cancer is 10 months.

During my discussion Dr K had told me that in cases like his they are usually talking months but my brother has never asked her details like that. Can you blame him??

He must have texted me as soon as he left the office because I got this awhile later

It’s a drizzly, shitty day.  I passed a funeral procession on the way back from Hines and I pictured what mine will look like.  I see 1985 Ford station wagon with a cargo strap across the back to keep my mortal remains from sliding out at red lights, and you in your little green Fiat with the headlights on, slamming a double cheeseburger because you’re on your lunch hour and have to get back to work.
It’s part of her job to not let patient’s hope grow to unrealistic proportions.  Maybe it’s unfair of me to think that Dr. Tran seems to like that part of her job.
I told him that I don’t think any doctor likes telling a patient news like that. From my experience though a doctor (or nurse) has to come off with a sense of authority so as not to be seen as wavering or weak. If my doctor is going to tell me I’m going to die in 10 months I don’t want them to giggle through that talk.
He went very quiet for a few hours and I wondered what must he be thinking – would he just decide to end it all now that it has been laid out in black and white? That’s what he told me months ago when he first arrived. So, imagine my relief and happiness to get this characteristic message
I ain’t beat.
Dr. K had mentioned T-Cell Immunotherapy.  There was a segment on NPR about it today and it is well worth looking into.  The American medical community is, of course, reluctant to try anything until Big Pharma signs off on it, which could take years.
There are clinics in Mexico who can deliver it right now, today.  It’s only been proven effective against a limited spectrum of cancers.  I need to find out if the one of my have is in that group.
Dr. T gave me some anti-anxiety pills.  She wanted to put me back on Prozac, which caused me to lay awake all night thinking of the best way to kill myself, or back on Celexa, which made me feel like my head was full of sawdust.
We settled on the minimum dosage of hydroxazine.  Truth be told, anxiety is much less of a problem than it was before I was diagnosed.  Death is no longer some mystical, distant thing.  It’s at the door and asking for me.
I am recovering well from my surgery and was able to have him and my son over last night. He actually does look very well and ate like a king. He enjoys the conversation and is genuinely an interesting and funny person to be with.
I worry about the future, I worry a lot but we have some fun stuff coming up and I am determined to help him enjoy life as long as he can.