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.

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.

IMG_0917

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!