It’s April again.
This is a big big month for me: 10 years of post-cancer life. Not sure how to celebrate just yet, but for now being happy is enough. And I am quite happy!
I fell off the race wagon but will be starting again soon. But first, there’s a great Couch-to-5k program that I will begin this month that will get me back into the shape I need to be in. Work has been especially busy these past few months, but I’m starting to get that schedule under control too. Plus with the Sun returning to Seattle, the timing seems just right.
More posts to follow!
I know a few people who have started treatment this year. Hang in there! I hope the treatment is going well for you and that you are receiving the help and support you need. Let me know if there are any questions you’d like answered.
If any one else knows others who are currently going through treatment, I extend the same offer.
I haven’t given up on my cathartic year of cancer awareness and survival celebration events, I’ve just been too busy to post. I’ll be getting to that very, very soon. It’s been a great experience so far!
In the meantime, here is a great post on what to expect on the first day of chemotherapy treatment.
http://crazysexylife.com/2011/what-you-can-expect-on-your-first-day-of-chemotherapy/
So You’re Starting Chemotherapy – tips for the journey
Some ideas I’ve compiled based on my experiences in 2002.
Own it. You have cancer. You must face the fact that the moment you found cancer is the moment you became what they refer to as a “survivor” and what I refer to as “being human”. Having cancer does not make you special or unique. There are millions of people who have gone through the same thing. It’s something you have or had and something you will have to deal with for the rest of your life. What makes you special or unique is how you deal with it.
Be informed. Know what chemotherapy is, does, and why it’s used. Check out this Wikipedia article to start, http://en.wikipedia.org/wiki/Chemotherapy. Then, find out what course of treatment and why it is being prescribed by your doctor. Find out what the doctors goal of the treatment is. Know the drugs that are being used for chemotherapy. It’s never just one. Also, brush up on possible side effects of them and prepare yourself accordingly.
Ask questions and don’t accept any medical language that you may not understand. Knowledge is part of the control you will have over the treatment. Have your doctor or nurse explain things until you fully understand what they mean. Use this knowledge for you, not against you. Don’t be paranoid and don’t be afraid (I can say that, but doing it is quite difficult- these are your bridges to cross). Don’t second guess your doctor by looking it up on the internet- second guess them by getting a second opinion from a professional that has the education and experience you need. Self-diagnosis is the slippery slope to paranoia and hypochondria.
Find support. I didn’t go for support groups, but many people going through treatment find them extremely valuable. Find a group that can help you during and after your treatment. Post-chemo is just as hard emotionally. Look into support groups for the type of cancer you have online or at community centers. There may also be groups supported by the hospital that you are receiving treatment at. Help is where you find it.
Tell your family and friends what’s going on. Don’t surprise anyone with the news by announcing it on Facebook or waiting for a social function. Proactively get the word out to the people you care about. Also, don’t let anyone introduce you as a cancer patient at a party- make that your job. One time, before I knew what was happening, I was introduced as a cancer patient at a party and I found it humiliating as these family members and strangers looked at me with such pity. I’m so much more than a cancer patient! Put yourself in front of that bullet and you may find support you never knew existed.
Help yourself. Find things you enjoy doing and do them. Don’t put life on hold (try not to overdo it, though either). This is a great time to get into books, puzzles, games, movies, crafts, or whatever. Find joy in small things as big things may be too difficult. Set up plans for the near and distant future so you can have events to look forward to. If you find yourself sitting alone and feeling sick and sorry for yourself, go find something to do. Anything. You aren’t helping yourself if you find yourself in that situation.
Take care of your health and nutrition. Chemotherapy destroys white blood cells and alters your hormonal balance. Almost immediately, it is difficult to fight the smallest cold. As time goes on, your body takes longer to heal, so tasks that used to be easy can wind you. Your doctors are busy enough making sure you get through chemo- it’s your responsibility to pick up the rest.
Take the appropriate steps to reduce your chances of getting colds or flu. Avoid eating in cafeteria style places, wash your hands twice as often and be sure to watch for any food born illness outbreaks or new epidemics and protect yourself as best you can. Don’t be too afraid though. Your body can still overcome many things; it’s just much much harder.
Take supplements. It may be hard on your stomach to take pills, but products like Ensure can make that easier. However, since chemo I can’t even stand the smell of Ensure now because of the memory response. I ate so much of it! Still, it’s very good for you and you need all the vitamins you can get.
Drink lots of water. A sign of good health is clear fluids in and out. If it’s not clear out, then drink the water you need to correct this. While is sucks to walk to the restroom with an IV in you, it’s better than not.
Get to know your food. There are many nutritional fact web sites out there to gain information. I like this new-ish one NutritionFacts.org. There you can find gems like “soy can greatly reduce your risk of breast cancer recurrence” http://nutritionfacts.org/?s=breast+cancer. This site is a reference I trust.
There are many places out there that don’t have good information. Whether your information is from web sites, forums, newspapers, advertisements, or your grocery store shelf: do your fact checking before implementing the product into your routine. Take kombucha tea for instance. This drink can not deliver what it says and has been reported put people into comas. http://nutritionfacts.org/topics/kombucha-tea/. Proof that a little research can go a long way.
Take naps. Sometimes, you won’t have a choice. But rest is very good for you. However, taking too many naps can be a sign that you are slipping into a depression. Assess your mental health and take action to fight it.
Remember that you are alive. Wake up. If you’re reading this, you’re alive. Seize it, live it, talk to someone, make art, play a game. You may be just fine and feel healthy, or you may feel like your in your last hour; either way, make it count if you are able.
When and if you start to lose your hair, get rid of it. Who wants to watch their hair slowly fall out? This is a stressor that you can alleviate by just owning it and throwing it out. Think of it as a chance for your scalp to heal from years of shampoo and product, or a “low-maintenance” style.
Lastly, scars are cool. No matter where they are on your body. Unless it’s just a cat scratch- that’s not as cool. Otherwise, this is a physical display of character and experience.
I’ll post more advice as I think of it. In the meantime check out these sources for support.
http://www.livestrong.org/Get-Help
http://www.cancer.gov/cancertopics/coping
September 10, Michele and I will be doing the Paws Walk. This is not a cancer benefit, but we absolutely love PAWS and everything they do for animals; so it’s worth taking a break for. Come along if you like or donate. If you do have a dog, it’s BYOB – Bring you own baggy.
On October 1st, Michele and I will be participating in the Hell Run in Carnation. Registration is filling up fast if you’d like to join us. We’ll be in the 11:30 AM wave. If you don’t want to run, I’m sure observing this spectacle would be fun, too. Again, feel free to come!
The race is an all-out obstacle course through mud, over tires and hay and then through more mud. It sounds nuts/fun. Check out the details here http://www.hellrun.com/seattle/#/Hell_Run_Home.
The run benefits LiveStrong. While I’m not a huge fan of Lance Armstrong, I love this organization.
Blog news – You may have noticed that my blog url has changed. I’ve changed providers to DreamHost and hope great things from them. I already like their commitment to the environment.
I will be adding more content to the blog soon now that that’s all sorted. But first, I will be celebrating Michele and my 11th wedding anniversary this weekend!
Cancer – Part I
Warning: this post is a bit more personal than any of my previous posts. If you’d rather not know me this well, please stop reading.
April 14, 2002
Michele and I were sitting on the couch watching Absolutely Fabulous. We were wearing pajamas. And, like any guy wearing pajamas watching TV, I rested my hand in my pants. But it wasn’t comfortable. Something was wrong. My senses buzzed trying to figure out what it was. I felt around with my hand and discovered that one of my testicles was twice the size it normally was.
It’s cancer. It’s not cancer. It’s cancer. No. No. No, you dummy- it’s cancer.
There is an app on my phone that shows you where the stars are. If you point the phone towards the floor, you can see what the universe would look like if the Earth wasn’t under you. This is a small glimpse of what it felt like as the realization of my findings settled in.
Things started to blur then disappear. The walls, the couch, the lamp, Patsy and Edina… just me for a moment. Then, Michele slowly materialized into my periphery.
My heart stopped.
Do I tell her?
I stood up, sweating.
Michele asked, “What’s wrong?”
Those moments jumbled together as a dream does.
But then I was holding her. She was crying. Crying funeral tears. We stood that way for a long time.
April 2011
That was nine years ago. I can feel that day as though it where an hour ago. I feel it again and again.
I’m one of those survivors that didn’t do the support group thing. I haven’t really reached out about this experience or been very expressive about what happened then.
This year will be different.
Every month for a year I will be participating in an event that either helps raise money or awareness for cancer research and prevention and/or supports a community building organization. Or really any charitable organization. Without cancer research and awareness I would not be alive today. And without community, friends, and family, I would have no reason to.
I will also share a story through this blog at least once a month relating my experiences with testicular cancer. At the end of the year (April 2012) I will celebrate 10 years of surviving cancer. I’m not sure how I will celebrate, but I imagine it will be awesome.
This month I will be running the Bellevue 5k (starting small) on April 17th that supports the Seattle Children’s Hospital. Come out if you’d like! It’s hard to find a good event for each month so if you have suggestions please let me know. I know for sure I will be doing the Fred Hutch Shore Run on June 12th.
Next week is National Testicular Awareness Week. Check your nuts and tell your friends to do the same. For real. Testicular cancer is the most treatable type there is. A man’s chances of getting it are 1 in 270. The risk of dying from it is 1 in 5,000. As cancers go, that’s pretty good.
So, no excuses.
Cancer- Part II
Warning: this post is a bit more personal than some of my other posts. If you’d rather not know me this well, please stop reading.
2002
I had found the lump on a Friday and made an appointment to see a doctor on Monday. Michele and I had long standing plans to go see family in Oregon over the weekend, which we did. We kept the whole lump thing a secret. I don’t remember much about the trip.
That Monday I went to a doctor. He scheduled a visit with an urologist and took lots of blood samples.
The next day, I went to the urologist, had a cat scan, an ultrasound, and more blood samples were taken. Then he scheduled surgery, to be done by him two days later, to remove the offending thing and find out what it was for sure. With the type of cancer I had, you can’t do a biopsy. You have to remove it and then examine it for cancer, otherwise cancer cells could be released into the bloodstream.
The surgeon was very nice. But it concerned me he had a big medical book by his desk that he kept referring my questions to.
Apparently I had told my parents that I didn’t want them to be there for the surgery. So Dad had called up Michele and said, “Charlie doesn’t want us to come to the surgery- but do you want us there?”
She said yes and I am so thankful.
And so was she, because it was a long day. I was very nervous and, I felt, not very pleasant to talk to. I kept thinking things like: if there was an earthquake during the surgery, would little bits of this awful ceiling fall into me?
They called my name and I went in, changed into a gown, and then they gave me a bed. The bed was one of many in a large room. Each bed had a person in it. I think they gave me something to knock me out, but I don’t remember. What I do remember is watching a large guy in the bed across from me get some sort of injections repeatedly stuck into his tricep by a doctor, the patient’s wife by his side. I also remember seeing another doctor in surgical gloves, a rubber apron, and boots – the kind I used to wear when visiting the old Potter farm. My friend Chris later said that that’s how all surgeons used to dress. His exact words were, “That guy’s old school.” Neither I nor my family remembers seeing my actual surgeon. I have no idea if we did.
This part I only know second hand: When I was done, they wheeled me out on a gurney and then brought a wheelchair to discharge me. A nurse injected me with some wonder pain-killer and an orderly and my dad got me into the chair. Somehow they got me into the car, I was driven home, and they opened the car door again.
This part I remember: When I tried to stand up to get out of the car I buckled over in excruciating pain. Apparently the wonder pain-killer only worked within a radius of 12 blocks from hospital, but unfortunately we lived 13 blocks away. Michele and my Dad, mostly my Dad, got me from the car into the apartment. They set up the hide-a-bed in the living room, and plopped me down in it. Then, I was either only semi-conscious or asleep.
I stayed on that bed for about three days.
The doctor called me a few days after that and we scheduled a time to talk about the results; which was that it was definitely cancer and that I needed follow up treatment.
I met with the urologist surgeon. He said that we had an appointment scheduled with an oncologist later, but that he could go over some of the treatment options.
The first option, which he said that the oncologist would recommend, could be radiation, but doubtful, and some chemotherapy. The other option, which is what he recommended, was to laparoscopically remove all of my lymph nodes. He showed Michele and I pictures from that big book where all of my lymph nodes were (they’re all over your body). It sounded awful. We said we’d wait until we met with the oncologist to decide what to do. That was the last time we met with him.
My friend Chris had more advice about this scenario. “Doctors prescribe drugs, surgeons prescribe surgery.”
The next day I met with Dr. Callahan. He did not prescribe surgery, which was great. He also said that I didn’t need radiation at that time, but would only need chemo for about nine weeks. He said that if I didn’t respond to my treatment then we would talk about radiation but that it was unlikely. I liked Dr. Callahan, was reassured by his demeanor, and decided to trust whatever he said.
The treatment started a week later, which I will blog about next time.
The time written about above was the most chaotic and the hardest to remember accurately. In fact, I’m sure that this isn’t very accurate, but it’s close. Also, I’m noticing that there are few emotions written about in this period. But I think it’s because we never had time to feel, just react. It was weird to have three different doctors and no one managing your overall experience. There was a lot of waiting with no definite answers. I have heard from others that had similar experiences. It’s a confusing time. All you can do is to try your very best to be patient.
I want to thank my family for being there as they always are. Not just for me, but for Michele too. We would have been helpless throughout this without them.
And thanks to the Li’s for their sage advice and willingness to help.
As you know, on May 8th I will be dong the 10k at the Everett Heroes Half. I’m excited!http://www.heroeshalf.com/
Cancer – Part III
Section 1 – Chemotherapy Treatment
Lab 1 – The First Day
The doctors told me a few things I could expect from treatment:
- You may or may not lose your hair.
- It will be hard to stay hydrated.
They also gave me a little folder with a sheet for each drug they would be giving me and its side effects.
Here’s what they didn’t tell me:
- It’s possible to get over-hydrated with treatment.
- You will experience most of the side effects for each type of drug and be prescribed a bunch of other drugs to deal with these side effects.
- You will be stuck with all sorts of needles and wait quietly for hours as the drugs get pushed through you and have access to only limited cable channels to distract you. Luckily, there is a DVD player.
- You will lose your hair. Maybe not all of it, but it will start falling out.
But it’s different for everyone, and there is no way to be truly prepared for what happens. You expect to feel bad. You expect to feel sick. But none of this happens on the first day; except for the DVD player.
Michele took off the day from work to be with me on my first day of treatment. The nurses came out and introduced themselves and us to my roommate, Russ, who was accompanied by his dad. They then wheeled in a DVD player and showed a video “What to Expect during Treatment”. I think they showed it to us to create a bonding moment between my roommate and me. It was very poorly done and there where many snarky comments to be made.
Here’s one scene that stuck out in my mind: A man is changing a tire and he keeps dropping lug nets and is getting very frustrated as he’s putting the wheel on. His wife or partner or whatever walks out and gives him a hug and some lemonade. A voice says, “There are times you will not be able to do the things you usually do well. You may or may not be as coordinated while going through treatment. It is not uncommon to lose patience or get angry when this happens. Know that this is normal and that you will get better.”
My first reaction was, “he’s changing a tire when he’s not in treatment? Life will exist when I leave here?” Later, I learned that all this was true; that I will be expected to live outside treatment and do normal stuff, and that doing some things was very frustrating. It’s mostly because you can’t concentrate very well. I avoided changing tires.
They then proceeded to stick a few needles in my arm. They told me what drips were going in and when and that I can wheel the whole system in and out of the bathroom if I need to, and if I do, pee in the jug with my last name on it. I can tell you that juggling medicine that’s nailed to your arm while opening a super heavy door for the bathroom is no easy task. But it is humorous to watch.
Then, they just leave you in the room. You can ask for anything you want and they serve lunch, but pretty much leave you alone until its time to go for the day.
But I wasn’t alone. There was nervousness and laughter, stories and explanations. And lunch was pretty good.
I’m so glad that on that first day Michele was there, and Russ and his dad. There was a real sense of hope that all of this would be worth it in the end. Later in the day, Michele lay on the bed beside me and took a nap. Overall, it was a good day.
And that was the most unexpected thing of all.
Next up:
Section 1 – Chemotherapy Treatment
Lab 2 – Sick of Being Sick
Michele and I had a great run at the Heroes Half in Everett this last week, but my knee got a little wrecked at the end. It’s not torn or broken, so I’ll be doing some exercises to get it back in shape and maybe take some time off running.
The next event will be The Fred Hutchinson Shore Run/Walk 5k on Sunday June 12. I will be walking or running depending on how the ol’ knee is. This is a great event and I encourage everyone to come out and support the important research the Fred Hutchinson Cancer Research Center does. You don’t have to run! It’s a very scenic route along Lake Washington and ends in Madison Park. It should be lovely.
Update: Join my team and help me raise money for the faithful Hutch’ or, you can just make a donation on that same page. Here’s the page to do either: http://getinvolved.fhcrc.org/site/TR/Events/General?px=1357995&pg=personal&fr_id=1220
For more details, click the link below.
http://www.fhcrc.org/about/ne/events/shorerun/index.html
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