A moratorium

My brother has gone from a regular night schedule —Pretty much quiet from 10pm to 6am but with increasing trips to the bathroom and coughing spells —to a night time free for all.

I can excuse the coughing and piss breaks because those can’t be helped but I draw the line at putting away a full rack of clean dishes at 3am….when I have to work the next day!

I emailed my feelings to him early Friday morning from work using his style of direct and to the point-

Can we please agree to keep the noise down/to a minimum between the hours of 11pm-5am?

No response or acknowledgement-My empathy river has pretty much run dry.

He has said he feels he has a toothache coming on and was chuffed that he was able to snag some dental care at the VA. He is missing the part about the significant radiation therapy that he had on his throat, neck and jaw back in the spring. I’m guessing he may have osteoradionecrosis.

Perhaps the most severe side effect of radiation therapy is osteoradionecrosis (ORN), or bone death. This condition occurs in three to ten percent of patients. Osteoradionecrosis develops as irradiation diminishes the bone’s ability to withstand trauma and avoid infection, and it can be facilitated by poor nutrition and hygiene. This process may be spontaneous or result from trauma, leading to non-healing soft tissue and bone lesions, followed by bone necrosis. The non-healing bone may become secondarily infected.

The photos of this complication are not pretty so I’ll refrain from posting but feel free to google if you have a strong stomach.

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

 

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”

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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

 

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.

 

 

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??