Detour

I came home tonight to have my brother tell me

“We need to go to the emergency room”

3 hours later it turned out that he had gone for an appointment today with ENT-they changed his tracheostomy tube and then he couldn’t remove his inner cannula. It’s really funny to me when he describes his issues like I don’t understand. I get it-it was my job to take care of trach’s for the past 20 years…

On the flip side, I am now`at midnight officially NPO, nil by mouth for my surgery tomorrow. I’m keeping it light. Technically it is only day surgery but I suspect my leg will be pretty darn sore when I wake up.

I’m just grateful to be able to turn off my alarm for a week!

 

 

Me time

This will probably be the last update on my brother for a few weeks. He is finishing up 6 weeks of chemo and radiation. He told me today he is glad it’s over. The radiation in particular is literally toasting his neck inside and out. Apparently his throat is quite swollen-he can’t swallow very well, has no appetite and just generally tired of having to spend 2 hours in the middle of every day at the hospital.

He will have some “time off” and see his oncologist, the giggling school girl on May 11, get some repeat scans to see what the cancer is doing and then formulate a new chemo regime.

In the mean time, It’s all about me!!! I am finally, 4 years later having my torn hamstring repaired on Thursday. I was told it was inoperable after about two years but when I was having physical therapy for my 3rd sciatic pain episode my physical therapist recommended a doctor he thought would/could do it. It’s complicated now because of scarring etc.

When Dr Nho, (Really) told me it was a same day surgery-Yeah!!!

Then he told me I’ll be on crutches for 6 weeks-Boooo!!!

I’ve wondered how I am going to get around and to work relying on other people because I won’t be driving…honestly it’s given me nightmares. I am afraid I’m going to get left somewhere and forgotten. Don’t laugh it could happen.

Even worse than that is having to ask someone to take me somewhere…..arrrgh! the agony.

But my leg is hurting enough to think this is my only chance to fix it so Thursday morning I will toddle off with my crutches to complete the triad. I am a nurse and caregiver and now a patient!

Am I missing something?

I live with a 60 year man (my older brother) who has been diagnosed with stage 4 tongue cancer with metastasis to the liver, spine and femur. He is completing his first round of adjunctive chemo and radiation with minimal side effects. He saw his oncologist today and this is his assessment of that visit

I went and saw Dr. K this morning and she was giggling like a schoolgirl as she was reading my chart.  She said whatever I’m doing, just keep doing it.  I may actually turn out to be one of the lucky ones.
A house, a small business and cancer free.
Trust me-I have no desire to burst his bubble or bury him anytime soon but this is also before any repeat imaging to even assess whether the chemo has done anything to the outlying sites let alone the only slightly less massive tumor in his neck.
He is on a Fentanyl patch and takes Norco a few times a day although he did tell me that sometimes 4 aspirin work just as well and don’t make him sleepy…
He does ride a bike almost daily (weather and nausea permitting) and he was very helpful moving furniture last weekend but~
Could he be anywhere near being cured? I considered calling his doctor but will refrain from getting in his personal business.
Maybe now I can stop walking on eggshells and tell him his share of the mortgage is due??

Up, down, sideways

Down first? My brother had a new demand. He seems to get something in his head and can’t let go. A desk. He needed a desk, a desk…a bigger desk….

My daughter had some of my furniture and wanted me to take it so she could get her own new sofa for her new unmarried life.

So there’s me thinking that i could kill two birds with one stone. Rent a van-move my furniture and get a nice second hand desk. While I was the the resale shop I also saw a “stone” kitchen table.

It seemed sturdy but I assumed it was a “composite” or “fake stone” top. No, it was a proper 3ft x 6ft solid stone table top that my sons insisted weighed over 200 lbs.

Older son was cursing, the rest of us were pissed at his behavior and once again I was left with that “I was just trying to help” feeling.

My brother got his desk.

On the upside, I did take my brother to see the Van Gogh exhibit. I was merely the escort and deferred to him. Let him take as long as he wanted…and he did stand a long time at some of the paintings. He stood close, unapologetically gazing at the paintings as if he would never get this chance again. He seemed very peaceful so I just stood back and waited.

I do want to mention that I am very proud of my brother for going out in these very public spaces with his tracheostomy. It can be noisy and he doesn’t try to hide it but people are less put off than I would have thought. I can imagine that most people in his situation would just stay around their house.

Sideways? IMG_0901

That is the inner cannula of my brothers tracheostomy soaking in his coffee cup in my kitchen sink. As an ICU nurse, I am simply speechless

 

A good day

And there haven’t been too many of those. I worked out this morning-with a mediation. One son seems to be employed but the other didn’t get his advancement job because he failed his drug test.

We moved some furniture so the top floor of my two flat is looking like a home.

Mostly my heart and mind is calm.

My brother is not doing so great-he has two more chemo infusions and about 10 radiation treatments to finish “round 1”. There is a visible decrease in the mass on the outside but apparently it is quite swollen on the inside.

His main complaint is that everything tastes the same-“like shit”.

He’s tired and having arthritis pain in his hip-the same hip that has metastatic cancer. He’s looking for an electric massager.

Spring is here in the Midwest US and this weekend is promised to be sunny and warm. Time for some gardening and family bonding!

Feeling empty

After struggling with another demand-this time for more water pressure and being berated for my parenting skills from someone who daughters refuse contact with him…

I am feeling numb-like nothing bothers me any more. I don’t even feel the need to say it~it’s obvious~I just am not bothered.

Even my BF could’t get me a rise out of me and he is a champion chain puller.

I was telling a nurse at work about some of my trials and tribulations about life on “the other side”…being a caregiver not the nurse. She said she experienced the same thing with wives of men who had just had cardiac surgery. She told the wives that the men were rude, inpatient and demanding of the wives because they trusted them. They were sweet as pie to the nurses because they depended on them for ice chips and pain medicine. I have to agree and say I like being the nurse more than the caregiver.

My brother said he wanted to see a Van Gogh exhibit at the Art Institute so I got a membership so he could go a few times. Today the card came in the mail and I said let’s go Sunday.

He says “Why Sunday?”

I said well, Saturday or Sunday whatever you want…to which he replies but “Why this Sunday?”

I said well, the Van Gogh exhibit ends May 11 so just keep that in mind, doesn’t have to be this weekend but..to which he replies “Then we need to go sooner rather than later”

Okaaaaay, so I guess we are going this Sunday

That’s my life in a nutshell~~Happy Friday!

Caregiver’s Holiday

I am at loose ends

being hit from all sides-because it’s not not like I’m some spinster with nothing and nobody else to worry about…

I have a full-time job, 3 adult children in various stages of divorce, under-employment, quarter life angst….and  a boyfriend who just wants me to be “close to him”. Really?

Did I mention I have my own surgery coming up April 28th?

The reality is I am close to tears most of the time as in all day, every day. Almost anything anyone says to me-good, bad or indifferent (hate indifferent) sets off a cascade of physical reactions. My heart races and my head gets very warm. I can’t think, I pace, I mumble and take deep breaths.

Recognizing this crisis situation, I now have an appointment with a counselor on Monday. I’m not sure I will make it to Monday or if counseling will help. Today I considered calling the vets crisis line…I am a vet…Xanax seems like a good option.

Oh, wait-I titled this post “caregiver’s holiday” and forgot that I actually went away overnight last weekend. Feeling the need to escape and disappear I booked a posh room at a nice hotel about 100 miles away for BF (boyfriend) and me. The hotel was fab, he was mediocre. No, I do not feel rested or rejuvenated – the room as nice as it was did not have a bath…

I’m back to the same incessant demands-my brother is now complaining about the water pressure in my house. Not once but several times…with links to wikipedia and plumbers.

He is now 5 weeks in and is feeling the effects of the chemo and radiation. He says he is cold all the time-he has a space heater set at 82 degrees and still wears a hoodie. The radiation is causing swelling in his neck and he is coughing a lot.

The silver lining on this dark, dark cloud is that we are entering birthday season in the Inner Fire family. Everyone except my daughter in law has birthdays between now and June 24th. The plan is to squeeze in as many summer nights around this puppy as we can!

IMG_0888

 

 

quiet, peaceful days…not!

A lack of posts does not indicate serene calmness here. Yes, there is a distinct lack of CPR and other medical emergencies but an insane level of stress and restrained politeness has set in.

Brother Grouch has arrived. The humble, near death, grateful brother has been replaced by argumentative, selfish, know it all brother. It doesn’t matter what we discuss, I’m not going to argue with him-I defer to him on everything.

For example, he claims there is nothing to eat but I know there is pasta, soup, eggs, more soup, pancakes, snacks, ice cream, bacon, burgers…

No problem, let’s get other things to eat.

It’s not all bad. My brother is very neat and he did my laundry for me this week which is a huge help.

My boyfriend sent him a link to some “cancer cure”. I saw that my brother responded saying-“somewhere out there is a death certificate with my name on it….” he went on to say thanks very much but the VA is treating him very well

How do you draw the line on behavior with someone who is looking death in the face?

A better day

Today I relaxed but I also went to Target and Home Depot with my brother…and his tracheostomy. Now to be clear  – I am an ICU nurse so the noises a person with a trach makes don’t faze me but I did notice the occasional look from other shoppers.

Just to back track-my brother is complaining about the most mundane and trivial things- Last night he presented me with a list of items he needs:

  • Drip coffee maker-he doesn’t like my french press
  • A frying pan-he thinks my LeCruest omelette pan is “chewed up”
  • A toilet paper holder- Really?

In addition to this list- he is cold and needs a case of tissues

I just take a deeep breath-it’s okay, it’s probably just me and my overly sensitive nurse sense. I do however want to remind him that just over a month ago he was living in rural China and was probably lucky to have toilet paper let alone a toilet paper holder!!!

On a good note-he bought tater tots at Target so I made him a cheesburger, grilled onions and tater tots. We sat by the window at the back of my house overlooking the alley and he ate it all-every last bite-which means he won’t have to pour his dinner into his stomach through his G tube!

 

Trying to get by

I haven’t exactly forgiven my brother for his selfish and cruel behavior yesterday but I am trying to move on. I am in a constant torment about what I should be doing vs what I want to be doing.

For instance, tonight I would love to be relaxing with my boyfriend on the sofa but instead I have to be home checking in on my gaggle of men-my brother and my two sons. I am surrounded by some of the most selfish men in the whole world.

At this point my youngest son is actually the only one who is concerned about my mental health…besides my daughter.

Today I contacted a counselor. I decided I really need help. My problem is being a perpetual people pleaser which seems kind of oxymoron since I am so grouchy and negative.