3 times the fun

My brother has started a second round of chemo. Apparently it is 3 drugs in various combinations over about 3 weeks. He has been warned it is probably going to be harder than the first “low dose” regime.

We are still “separated” he is staying at my house and I am staying with my boyfriend til my leg heals from surgery but we keep in touch and I am still concerned about the effects of radiation on his neck aka large open oozing wound.

He sent me this photo with the message “I’m glad I got rid of this shit”

IMG_0953

I asked about the dressing they gave him and he blew me off saying it’s almost gone. Amazing how your perspective changes when you have cancer.

Note: The lump on his chest is his pacemaker. Read here about that

 

Round 2

My brother has a sunny disposition-at least that’s what he presents to me. He used to go scuba diving in Australia and Thailand, it’s a passion for him. I saw a special diving program for vets right here in Chicago. Under “normal” circumstances, this would be perfect for him. A man with a tracheostomy is not exactly “normal” particularly in an activity that depends on specialized breathing apparatus.

I don’t think I’ll be able to dive under any circumstances with a trach.  But I’m going to lean on ENT to remove it when I go back to see them in July.

As I said, he is very optimistic. Tomorrow he is having a CT to see if there is any improvement in his tumors….the ones on his liver, spine and femur.

Wednesday he sees his oncologist to discuss the next round of chemotherapy.

I am less optimistic but then I never feel the need to rub someones face in the unfortunate aspects of their lives. We all need to have our own version of reality.

 

 

Sometimes I need to speak up

Sunday I saw my brother after more than a week. His radiated neck was open, oozing and raw. I casually asked him -“hey, what’s going on?” He said-“no, big deal, it’s better than it was…”

Really? He went on to say that he was told the red, burned skin I saw a week ago would slough off but the way the trach ties a rubbing his raw skin was just not right to me. He clearly had blood dribbling down his chest at some time.

Pain? He has complained about pain to me, in fact I gave him all the Norco I got (and didn’t take) after my surgery. Thinking this through I regretted that decision. A cancer patient with mets to their liver should not be doubling up on acetaminophen. When I broached this subject though I was confronted with excuses and misconceptions.

Monday morning I reached out to my brothers medical team via a nurse (love nurses) call center. They listened to my concerns, asked appropriate questions and sent out a message to ALL his caregivers- oncology, radiation and ENT. They all called me back with a high level of concern. They defaulted to his primary care doctor to see him today and call in the others as needed.

In my head i was thinking about all the patients I have cared for with huge gaping wounds from radiated tissue which just crumbles apart and carotid arteries which spontaneously rupture….

PAUSE::::This is where is have to say the VA has been awesome and exceptional !!!

So this afternoon I text my brother to say “so did they sort you out today?”

All I got back was “A OK”

In my current state of incapacity that will just have to do for now.

Surgery is not to be taken lightly

I had surgery last Thursday-four years ago I slipped on a puddle of water “at work” but while visiting my son who happened to be a patient at the hospital where I worked. I thought I simply embarrassed myself big time and despite feeling like I was going to pass out I did my usual…”No, I’m fine”…”No, really I don’t need any ice…”No, I’m okay”…

Clearly I was not as I had rather dramatically torn my hamstring muscles off my bone and simultaneously was bleeding like a MF’er into my leg.

The first doctor told me that since I don’t jump hurdles or run sprints (aka old, gray and fat) I shouldn’t really bother with surgery…”after 3 months you’ll just have the occasional twinge”

After several months of PT, rounds of doctors, sciatic pain, steroids etc a second doctor told me it was inoperable as it was now scarred to the back of my leg.

But earlier this year after another bout of sciatic pain I was in yet more physical therapy when my young healthy and rather chirpy therapist said “Have you ever considered having that operated on?”

Fast forward to April 28, I am in the pre-op holding area at my local hospital having the same feeling I get when I am sitting on the runway waiting for  flight to take off…I tend to look around and want to put my finger up and say..”Ummm, I think I’ve changed my mind. Can you just open the door and let me off?”

I hung in there and drifted off to sleep, waking up 4 hours later with the on my leg.

IMG_0912As you can see or let me clarify-this is a large (but light) brace that goes from my hip to my ankle.

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I will be wearing this the better part of everyday for the next month.

The surgery was on the more complicated end of the spectrum of options-took longer to dissect the sciatic nerve/muscle loose and required the use of a donor tendon graft so even though the pain has not been unbearable it is sore, difficult to move and almost impossible to sit.

IMG_0923Now 6 days post-op I still spend most of my days horizontal-when I am upright I am dizzy and lightheaded. Hoping everyday will be better but so far it’s very slow.

My brother?? He’s enjoying his break from chemo and radiation, starts a new round of PET scan, CT etc next week.

 

 

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!