Cancer and Hair

Baldness, the most commonly understood sign of cancer. It is a common side effect to chemotherapy. It’s not the head hair though, it can make beards fall out, eyebrows, all your body hair, or you get to keep it all. Tada, common perception and tv gets it wrong yet again. I lost head and facial hair (except eyebrows) while a friend lost everything, and I will get to how weird it looks/feels. And while it didn’t force my body hair to fall out, body hair fall out naturally all on its own at a steady state, the kicker is that in my case the chemo prevented new hair from growing back so the amount of body hair became less and less.

Chemo does not force hair to fall out immediately, it can take weeks for it to start and you will know it’s coming, everyone knows as people don’t shut up about it. The most egregious is when people accuse someone of lying about getting cancer treatment because they have hair, and yes this does happen. In my case I still had some strands of hair that would still grow or refused to fall out and people assumed I was off chemo with my hair growing back, sadly not all strands are affected. The worst thing for me was the stares I got when it started, I looked like shit, the stares and mutters from people just made me self-conscious. It would have been better in my opinion if they had come up to me and asked. And yeah, others that is the last thing they want as it gets awkward and forces them to confront things.

Hair does not just fall out; it takes time and is painful both physically and mentally. For me it stung, each strand of hair itched and burned in my scalp until I literally pulled it out which is one reason I looked so funny. Then when I showered the hair filled my mouth, almost clogged the drain and went everywhere. Not all of it of course as it can’t fall out together, it took about a week for it to all come out so I was shedding worse than a cat. Then I was mostly bald, but yay for not having to shave anymore. Mentally it is a gut punch, a reminder every time you look in a mirror, or wonder if random people will judge you. Hair is so much of a personal thing when it comes to styling and looks and even personality. I loved my rich silky brown hair. The feel of the wind on bare scalp also felt so weird, I never liked hair that short as it didn’t look good on me.

Knowing this would happen though I did take some steps. A week or so before starting chemo I cut it short but not shaved. The reasons were so I could get used to shorter hair as it went from inches down to a quarter inch, the other was so when it started to fall out it would be less hassle. I am glad I did that preparation as it made the issue of it falling out less crappy. If I hadn’t already felt wind on my scalp it would have truly freaked me out on top of other freak-outs. And I wanted to keep it as long as possible because fuck cancer. I did one other thing and told my friends that if they tried to shave their heads in some sad form of support I would insult them. There is no reason for them to shave, it shocked more than a few as that was deemed a standard way to show support or solidarity. However, I did not want them to look as crappy or silly as I would, it took years for them to get their hair to proper lengths or how they liked it. If they wanted to shave it to donate their hair is entirely different but that is not what “tradition” says. And this is a personal choice that every patient and friend of a patient must decide on their own. Did joke about a how funny one friend would look if she lost her afro though, earned me some dirty looks which was quite funny.

And yes, after treatment the hair should grow back, mine took a month to start. Just don’t expect the same hair that you lost. First off it will not grow in evenly; I need a trim to get it to look even as different patches started to grow back first, and my beard came in before my hair. Second it can change color, my hair is now black and not brown and seems to have lost its slight curl, this is a common side effect too, of hair coming back a different color or texture and I have no fucking clue why. Third, hair grows so damned slowly, like a quarter inch a month which is painfully slow when you are used to one or two inch locks, or the even harder foot long. And for all I know it will grow faster or slower, so much I don’t know and can’t seem to find out through research.

FOOOD!!!!!!!

Food. Required to live yet can be the bane of the cancer patient. There are four things that need to be discussed in relation to chemotherapy; nausea, pain, appetite, and taste change. As seen in the last post, many chemo drugs cause nausea or appetite issues so we shall start there.

“Nausea is a sensation of unease and discomfort in the upper stomach with an involuntary urge to vomit. It may precede vomiting, but a person can have nausea without vomiting. When prolonged, it is a debilitating symptom.” From the wiki. Chemo does something to irritate the stomach and intestines to cause this. There are meds to help stop it, some are very strong and will paralyze the nerves in the stomach so you can’t feel it. The nausea was worse for me on the days of and immediately after chemo, but it would last for the whole two weeks between cycles and would then get worse upon next treatment. It will change what you can or are willing to eat, for me greasy foods calmed my stomach so I ate greasy meats and avoided carbs. You may not know what will make nausea worse until you eat it or smell it, and then you can start puking. A friend came over after my first treatment when I wanted to die from the nausea and he made me some chicken noodle soup, which I immediately gagged on and started heaving. I wound up not eating for the day or two after chemo, at least no more than a few bites at a time, and one week it caused me to lose 15 pounds in one week. And this was one about 8 anti-nausea medications some of which were given through IV.

Next to this is appetite. Being sick will make you want to eat less and if eating makes you sick, just imagine. The hard part is food is required to keep the body as healthy as possible while dealing with the poison. The nausea may have no impact on appetite or the meds might change how or when you feel hungry. I kept an appetite, at least on non-chemo days, and could force myself to get some calories down. Others are not so fortunate and I suggest finding a cookbook if you or someone you know has trouble wanting to eat. The cancer cookbooks are great (I got one just in case) and cover how to get extra fiber or protein or dairy or just foods really high in calories or maybe mouth sores make it hard to have solid food so liquids and smoothies will be had. Nutrition must be maintained or it can jeopardize treatment or cause hospitalization. Chemo tears down the body and food builds it back up.

Another thing that might make eating hard is pain. I had none of this but have talked to several people that have. Mouth sores seem to be the most common but others may push in the intestines and hit nerves or the tumor and cause physical pain which can be quite excruciating. I do not have much experience on this one so seek help online or talk to your doctor.

And finally taste changes. This one sucks just as bad as nausea. Basically stuff you used to love you may hate and stuff you used to hate may be your new favorite food. I have had this after both chemo and major stomach surgery. This last time I have started to love greasy foods which used to taste horrible and are now kinda sweet and juicy. Taco Bell used to be one of my favorite places to eat due to taste and fun memories with family, now its all so bland while I adore burgers which used to be very meh. None of this you will know, I attributed it to an “off day” or “I am still recovering” but at one point I had to admit I just don’t care as much for it. Thankfully I still love pasta, that would have killed me with my Italian heritage.

Nausea can play a role in taste changes, if a food you had during chemo made you sick than odds are you will never want to touch it again, its psychological unlike the previous taste change which was physiological. I got sick off a bag of baked lays; it caused me to gag for some reason in the clinic and now just that shade of lays yellow makes me want to puke.

Probably one of the weirder ones in cravings. It is like being pregnant; you just want certain foods and want them badly to the point that’s all you can think about. Some days I would have killed for ribs or ice cream. This will either get a “I so relate” or a “what the fuck” from other cancer patients and again, nausea and loss of appetite are issues still.

Chemo Hell

I am back after months, the reason why I was gone is in the title, Chemotherapy. That has to be the worst experience of my life. For those of you who don’t know Chemo (short for chemotherapy) is a type of drug either ingested in a pill form or injected through an IV and attacks the cells. It attacks fast growing cells and keeps them from dividing. I suggest the Wikipedia page here for a more in depth look at what they are and how they work as this post will be more about my experience with it. https://en.wikipedia.org/wiki/Chemotherapy

So I was on four chemo drugs and a dozen other things to make it more bearable. I went in on Monday for a blood draw, this would be when they put the IV into my chest and draw blood from it then leave it in for the infusions aka injecting the poison. I had a chest port installed as a semi-permanent IV location as it can stay in for five years and allows more to be pumped faster than a standard IV and is under the skin so I can shower, there will be a separate post on the port. The bloodwork would take an hour to come back and was for looking at chemical levels to tell if I was healthy enough for chemo that week, and if I was would then be taken in back for the infusion of one medicine. This whole process would take three hours and then I could leave. Would feel a tad iffy as if I had tried to read in a car but nothing too bad.

I would return Tuesday at about 8am for the second day of treatment. I would get to leave between 3 and 5pm. This would be when I got the other three meds, along with hydration to try and prevent kidney damage as well as some anti-nausea meds, maybe even a few other things as there were lots of baggies put into me on those days. I would suggest taking a blanket as the infusion center is kept cool but also the bags of fluids they inject can be pretty cold, they also had warm blankets which felt so nice to curl up into. This day I would try to nap through, that is pretty boring just sitting in one place for so many hours. I started listening to music or trying to play games but eventually those made the nausea worse. A few hours after I had finished the nausea would get really bad to the point of not being able to eat for several days except maybe a few bites.

Wednesdays were the easiest yet hardest days. I would feel like complete and total shit yet had to walk a mile from the apartment to the hospital all for a single shot. Now this shot could not be missed, I did the first week and so regretted it. It was a drug called Nuelasta and fuck it can suck. The shot forces the bone marrow to produce more white blood cells to bolster your immune system which chemo totally wrecks and must be done at least 24 hours after your last dose of chemo for the week. This shot will always hurt and is done into the arm or the belly. I missed it one week and when I went back two weeks later for my next cycle of chemo my blood counts were so low they delayed it and I got this stupid shot every day that week. This can also cause bone pain.

So what is bone pain you ask? It is very deep in the body and most pain meds can’t even get near it. It started in my pelvis as a pulsing and throbbing and spread up my back and down my legs. It would hit about a week after the shot. Some people Report that Claritin or a similar anti-histamine can help either reduce or stop it but I don’t have any evidence for such, took it of course because that hurt about as much as getting part of my jaw removed. The pain for me lasted from six to twelve hours.

So what meds was I on and what were the side effects vs possible side effects. Only the effects I could get will be listed as some can be given in different ways. Those of you squeamish may want to skip this paragraph. Methotrexate: low blood counts, mouth sores, kidney toxicity which in severe cases can lead to kidney failure, skin rash, diarrhea, nausea and vomiting, increases in blood tests measuring liver function, darkening of the skin where previous radiation had been given, loss of fertility, alopecia aka hair loss, skin photosensitivity aka oh god the sun is burning me!!! Cisplatin: nausea and vomiting, low blood counts, kidney toxicity, ototoxicity or ringing in the ears and/or hearing loss, blood test abnormalities aka lowering of electrolytes, peripheral neuropathy aka decreased sensation as well as numbness and tingling in extremities, loss of appetite (not to be confused with nausea and vomiting -.- ), taste change or metallic taste, increases in blood tests measuring liver function, hair loss. Doxorubicin, pain where it was given, nausea or vomiting, low blood counts, alopecia, eyes watering, mouth sores, red urine for a few days after dose, darkening of nail beds, darkening of the skin where previous radiation had been given, problems with fertility, decrease in heart’s ability to pump blood resulting in a lifetime max on the use of this drug, leukemia developing, tumor lysis or health effects caused by massive killings of cancer cells. Vinblastine: low blood counts, injection site reaction, fatigue and weakness, nausea and vomiting, poor apetite, peripheral neuropathy, constipation, diarrhea, fever, alopecia, hearing loss, mouth sores, taste changes or metallic taste, headache, depression, jaw/bone/tumor pain, high blood pressure, tiredness, shortness of breath, muscle pain, joint pain, extravasation (the leakage of medication out of the veins and into the body).

So what did I have. Nausea, hair loss, nausea, tiredness, nausea, peripheral neuropathy, nausea, low blood counts, vomiting. The nausea lasted for at least a month post chemo, two months later still get bouts of it. My hair is finally coming back and damn do I look good and sexy. My counts were still low over a month after chemo and almost needed transfusions several times. I’m still tired and shaky having trouble walking without a walker and have the neuropathy that I hope can go away. The nausea though was worlds worse than anything else, even the bone pain and as such it gets the honor of its own post.

That’s it for today. Fuck cancer!!!

I am in the process of making me a “I SURVIVED CHEMO” tshirt =D

Coping

Everyone has stress and develops habits for coping when the stress gets bad. I get flack for mine and being an ass. Why? Sarcasm and dark humour. One of the first things I did was look up cancer jokes. That minimizes its power over me, also gets me called insensitive and makes others uncomfortable. But when I am with another person who gets it and can pass the jokes around it feels like this isn’t serious and I am not dying.

But I knew my mechanisms going into this and some days it doesn’t work, like chemo days when after I just want to curl up and die. There is also the anger at how unfair this is and hating all those people who don’t want to puke their guts out, even if they are my friends and are helping me through it. Thankfully my friends understand, roll their eyes, and go back to trying to help on those bad days. On the worst days yelling and bitching is how I cope and thankfully people know it and take no offense.

Back to dark humor which is much less depressing. “Can you have hamburgers?” “What’s it going to do? give me cancer?” that was part of a back and forth with a friend who gets it. Who then promised that if I die while he is in Japan to go to a Shinto shrine and pray for me knowing or else I would haunt his ass. We both study Japan and know anyone who isn’t honored in death will come back to haunt people. That felt really good joking and knowing life goes on.

But I had no Symptoms

I was getting an echocardiogram (sonogram of the heart) and the technician was asking me if I’d had any symptoms. I said no. “Its amazing how many people I see who had no symptoms when diagnosed.” We were talking about the cancer, this test was because certain chemo drugs can cause heart failure or weakening of the heart so a baseline needs to be determined.

But how can so many people, some seriously far along, have no symptoms?

I think I did have symptoms, and ignored them. Cancer starts so small, with just a few cells and then grows and spreads. A weird itch is just a weird itch, its just a little extra soreness. My allergies are just getting worse. I’ve always had headaches they are just a little worse right now. Its probably just stress. No, not my symptoms, but examples.

Then you have doctors seeing a patient with some minor complaint, so it must by a hypochondriac (had a doctor call me worse, several of them) and part of that is the odds.

Well, what about lumps? My main tumor is found my pain on urination or blood in urine, something I had from another condition I was already being treated for. It then spread to lymph nodes in my groin, which requires palpation in that groin crevice by the leg, the amount of force needed to feel it though I would never have. The potential spread in my lungs? Never would have found due to severe lung scaring from asthma and pneumonia.

I had symptoms, kinda.

Cancer Diagnosis

March 21st. Having fun and dinner with friends, celebrating the end of needing a catheter and my final surgery after years of work to be healthy. And my 30th birthday on the 26th. Excited to be applying for jobs overseas to get to explore, working on a new diet and exercise plan to get into shape. Was up until midnight doing 4 player snipperclips then went to bed, had to be up at 6am to prep for surgery. Damn was I nervous but also so excited. Had a nightmare but not really a scary one, just imposing, of thousands of black thorny vines swirling around me.

March 22nd. Get there early. Scared shitless there will be an issue with the paperwork and have it delayed another three months. Was scheduled for the past December but scheduling snafus the graduation messed with insurance. But once everything went through I felt so relieved. Waiting, taken in back, drop trow and change. I decided to have fun and took a selfie with my Darth Vader teddy bear (gift from a dear friend) with the caption “Guess where I am” just to mess with people who weren’t up to date. They put the IV in, eventually wheel me back and I’m out.

I woke up in recovery. Something felt wrong. The bed was wet, I was freezing, and felt nowhere near sore enough, and it didn’t feel late enough in the day. It was a 6 to 8 hours surgery, it did not feel like night, not even midday. Two nurses attended to me (as in in earshot for a solid hour), assumed I just had an adverse reaction to something.

Eventually my urologist comes up to me and she is carrying pictures. Normally she is so professional or mildly caring looking but this was so different as it was apologetic, it made no sense. “I have some bad news. We couldn’t finish the surgery.” Cancer never entered my mind, figured there was just some complication that will mean no Japan trip in May. It sucks, I mean really sucks, spent years working towards that, but I will live. Then she started placing the pictures on my bed, full sized papers all glossy and fancy, talking about a mass they found and couldn’t even push a needle through, it means nothing, except that one word. CANCER. Everyone knows and fears that word, we are raised from birth to, as its the ultimate death and death sentence, or so it feels. Then all the promises of how they would get me though it.

Then they offer me a phone and if there is anyone I would like to call. I would love to say I broke down and cried, that I immediately called my family and they rushed down. I did break down but I didn’t contact my family, what could they do, nothing. I don’t talk to my dad much and my mom would be scared shitless like I was then it would be me doing the comforting, and then with no way to visit being in a different city. I didn’t even break down properly, teared up, asked for my cell phone so I could get some numbers to make the calls (cells don’t work in hospitals.) I called the parent of one of my best friends as he was at work and didn’t want to disrupt it. Then sent a message to another good friend who had just finished a bone marrow transplant due to leukemia. Then another friend I had known through 2 quarters but would visit and not get all emotional. The last two were texts, only the first was a call and did get a little choked up over that one, the other two use exclusively text. Then I waited for a room so they could run tests.

Will stop it here for now as its a long enough update and this shit is tough to write. I still didn’t believe it was cancer at this point, was hoping for an error. Now I am thinking of my next cycle of chemo starting Tuesday.

Surgery Basics – Recovery

Congrats, now you get to start healing and ready to return to your normal life. This will be both very easy and pretty hard.

You will wake up groggy, probably in stages and not really feeling anything. Even moving will be hard to start with. Just rest, relax, and enjoy whatever blankets they put on or you want off. The most surprising thing you will notice is the sore throat, which no one will warn you about. “Surgery wasn’t on my throat so it shouldn’t hurt” but they intubate, shove a tube down your throat, to help your breathe while out. It will also fade in an hour or so, maybe three but its so little, just the first thing I ever feel when waking up as I try to talk.

I do not know if it is me or what but the first thing I do when coming out of anesthesia is start to talk and blather. “What time is it?” “How’d it go?” “Can I get something to drink?” “Why does my throat hurt?” “Where is Darth Teddy?” “When can I get up?” So it is annoying, then some more sleep. It will take a few seconds for your brain to kick in, hence why I have asked why my throat was sore more than once.

There is one nasty side effect I had the last time though, and it was the only time so be warned. Operating Rooms are kept COLD, and in recovery they warm you up with heating blankets before you are fully awake. Sometimes you regain consciousness before warm, and it will be cold. This is a bone chilling cold as if naked and buried in the snow for an hour but instant. It can leave you more sensitive to the cold, happened to me and had to force myself to reacclimate because I hate the heat more than I feared the cold. It will get better.

The next thing you notice will be the pain wherever they did surgery at. It will hurt, or sting, or maybe something that cannot be described (which does happen) and will figure it out. They will give you pain meds for this, which I try to avoid and just take the edge off. For me a little pain is better than the addiction and the empty filling those medications give, but also ties in with my stubbornness and self-reliance. There is not much to explain on pain, it is pain.

You will either be outpatient and can leave once they see you are recovering, or inpatient where you get to stay in the hospital for a while. This is a boring step and the most aggravating. You are limited in what you can do and need quite a bit of help, need to rely on others. And can’t shower, which is the most horrible fate imaginable.

Most often after surgery I have a 20 pound carry limit, or 5. In school that would be my backpack I could no longer carry and forget moving things or helping with the groceries. It also means a lot of sitting and resting, and when forced to read or game all day it gets old fast. Ne prepared to have to stagger to the restroom. The carry weight is to prevent your wound from opening or things tearing.

Eventually, maybe even a few days after surgery you can shower. Do not shower without approval from your doctor as that can cause an infection, don’t know the odds but why risk it. Sponge baths leave you clean but not feeling as clean or are as comforting, and never had any really good shower thoughts with them.

Slowly but surely you will return to a normal life feeling better than when you started. Just remember the sucks is payment for healing.

Surgery Basics

I figure for the standard person the idea of surgery is very daunting and intimidating, it is and it isn’t. The idea of surgery is, but the process is much easier than expected, this is being done out of necessity. I have had about at least a dozen, take that for what you will. Unless its cosmetic, but I will never understand going under the knife if not needed.

Preregistration is pretty simple and straightforward, get a date set and a time, make sure you have a ride for afterwards and realize you may need help for a little bit.

Day of, make sure to be there at least 30 minutes early, my last one had to be 2 hours early so it varies. This is to get the paperwork out of the way and so it doesn’t get delayed or cancelled from being late. Had to wait around for 5 hours once and that just prolongs the dread and the thirst. Paperwork is paperwork and pretty boring.

Then you go to a waiting room, bring a book. This can last anywhere from 5 minutes to an hour and depends on if they are backed up and how early you are versus if they have a bed ready and how much of a cushion they plan for. This is one of the scarier parts as the dread comes to the surface and the waiting prolongs. Most is unnecessary worry, so just remember to breathe and focus on something.

They will then call you back, take height and weight, show you to a bed and ask you to change into a gown. Pretty straightforward but can be discomforting for those who are shy. At this point I am fine striping butt naked, they are professionals and who knows what weird shit they have seen. They will also bring you a warm blanket, these rooms are kept cool and also protects modesty. Then you have more waiting, always more.

Eventually they will come in to place your IV, fuck this step. It is actually rather painless and easy, but ties into another condition I have that is basically a phobia which I will get into in another post. If you have a problem with needles, tell the nurses and they should be more than happy to do whatever is needed, but it has to go in eventually. They can give you lidocain (numbing agent that works wonders) but can can burn if injected and there is also a cream version as well. I forego this step as a needle is a needle and I will feel it either way, that and just want it over with as this is one of the hardest steps. A small prick, or maybe a larger one but nothing too bad. The weirdest part will be the taste, they flush the line with saline and you will taste it. It tastes bad and salty and yet like nothing and will be gone in seconds. This is the sign the IV is in and all done as they just have to flush the line. Congrats, now the last bit of waiting.

This is the easiest step. They come, wheel you back to the operating room. Most surgeries will knock you out and the next thing you will know you are waking up and feeling sore. You may not even remember being wheeled back. The only two times I saw the OR was when they put the IV in back there and when they miscalculated the anesthetic gas when younger (I can have a high tolerance for that stuff) and woke up when they tried putting the IV in me when unconscious.

Others may do mild or twilight sedation, which you basically feel calm and just talk, or may feel giddy. Time flies under that one. The feeling is as if nothing is really wrong, they will use a local so you don’t feel the process. So when they are cutting or tugging things (had to have tubing put in, but that will be another post) it felt like trying to pull off a wet suit. Once done they bandage you up and wheel you out to recovery.

Congrats, the worst part is over. Next will be a pt 2 on what happens after surgery.

Purpose of Intent

I am starting this blog to document my experiences dealing with cancer and maybe help out others going through it. I figure lots of people do this but what the hell, it was suggested by a friend and may be good to help cope with this shit.

I am a 30 year old male recently diagnosed with urethilial cancer (the tube that connects to the bladder so you can pee) and the only reason I know the date it was found is that it was 3 days before my birthday, when I was supposed to be having my final surgery and able to move on with my life. Had just graduated six months before and went through hell to get there.

I want to give my own strategies on how I prevent breaking down and the struggles and high points of this journey. As you have noticed I do swear, it will continue.