Thursday, June 19, 2014

Relay For Life Talk


Hi all,

I do some speaking for the American Cancer Society, mainly at various Relay For Life's. Here's a speech I did at Wissahickon Valley's Relay For Life in Pennsylvania. Enjoy!






Saturday, December 17, 2011

Resources & Blogs I Like

Resources that are particularly valuable:

1. http://www.tc-cancer.com - the support forum is amazing. The wealth of knowledge, experience, and high level/intelligent discussions concerning TC is a godsend. My username is underdog521, feel free to reach out to me if you ever want to talk about something.

2.http://www.nccn.org/index.asp - This is pretty much the official resource many, MANY oncologists (in the US) use to treat their patients. An account is free so just sign up and then flip through the official guidelines for TC treatment in this section: http://www.nccn.org/professionals/physician_gls/f_guidelines.asp



Blogs I Like:


1.http://lessthannuts.blogspot.com This is an amazing blog about one patient's "journey" with TC. Extremely well written, very approachable, witty, and very much reminds me of my internal monologue throughout this entire process. I highly recommend you at least skim through it

2.http://emajoehealth.blogspot.com - This is another nice blog that's written by an American who underwent chemo in Estonia. After reading the first 10 posts closely I've skimmed through the rest and honestly, it's written like a story which I LOVE. It's like an e-book of the tales of a TC patient. <-Awesome

3.http://knowguts.wordpress.com/2011/10/22/how-to-be-a-patient/ - This blog is actually a friend of mine (Benjamin Glickman's) blog about his condition known as Ulcerative Colitis. His blog is actually the inspiration for this one! The majority of the blog is irrelevant to the topic of this blog however this one post titled "How To Be A Patient" conveys an important message and I think is a great message to all hospital patients, including cancer patients. Give it a read, I'm gonna call it the 10 P's of Patienthood!

4.http://www.youtube.com/watch?v=gvYoMGy3iHE&feature=relmfu - This is a vlog (for you older folks that's a video log, like a diary) of another stage 3 TC patient! Also, the particular video I've linked shows what hooking up to a portacath looks like since I wasn't able to show you guys that.

5. http://community.macmillan.org.uk/blogs/b/scared_but_in_good_hands/archive/2012/02/20/top-tips-for-making-bep-chemo-manageable.aspx - Found this post online, it's well written and to the point. I definitely found some of his tips (particularly 1,9, and 10) very relatable!

Monday, October 17, 2011

Guest Posts & Special Topics

Hey guys, so I've decided to give this blog one more feature by adding a guest posts (health care professionals) section as well as a helpful resources and "blogs I think are helpful" area. They will both exist in this post (EDIT: blogs I like/resources were moved to a separate post) which will periodically be updated as submissions come in. If you'd like an article you wrote or a study you need BEP patients or TC patients for, feel free to contact me at underdog521@gmail.com with what you have in mind. I'm really open to ideas but realize I will not post overly "general" cancer tip articles up here because those are available... all over the internet lol. I know ovarian cancer can also have a BEP regimen and though I know almost nothing about ovarian cancer, I'll gladly work with you to post ovarian cancer patient oriented articles since it's possible they could come by this site (it's #4 on google if you search "bep chemo cycle" and #'s 1 2 and 3 for "bep chemo blog"). Note, I'll also post my opinions of an article underneath the article.

order of posts for easy finding:
Guest Post #1: Life After Cancer by David Haas
Guest Post #2: Exercise and a BEP Regimen by Trevor Bradshaw
Special Topic #1: Medicinal Marijuana and the BEP Patient

Guest Post #1
This article was sent to me by Mr. David Haas who is a Family Hospitality Coordinator and an advocate for cancer patients:


Life After Cancer

There is no experience like being told you have cancer and very few people can relate to what you are feeling at the time of the diagnosis. The speed and seriousness of the illness require swift and direct action, and can leave you feeling lost, confused, and scared. Joining a support group is an important step during and after your treatment.

Cancer support groups are available in hospitals, community centers, and online. Through these groups, you can connect with others who have been through what you’re going through, who understand your fears and concerns and can tell you what to expect. You can receive counseling, which, whether private or in a group setting, has been shown to improve both quality of life during treatment and, in some cases, improve the prognosis. Having the opportunity to speak or write freely about your fears and concerns reduces the risk of feeling depressed and isolated during your treatment. Connecting with, supporting, and receiving support from others can give you feelings of empowerment and control when so much of your life feels out of control because of your illness.

Several resources available online can point you to a group in your area. Cancer Support Community provides general information for you to take an immediate and active role in your treatment. Through CSC, you can find support for both you and those around you who are reeling from the diagnosis. You can connect with a local support center through CSC’s Gilda’s Club, which has affiliates throughout the US and Canada, or join the online support network provided. There are also online support groups for specific types of cancer, from Mesothelioma to Breast Cancer to Thyroid Cancer.

Joining a support group can provide you and those close to you with valuable information and connect you with a community of people who will be with you through your journey and in to recovery. You don’t have to feel alone.

By: David Haas

My Review: I very much agree with the message that Mr. Haas is conveying, that support groups are very beneficial towards mental, physical, and emotional well-being during treatment and even after you're on surveillance (which I'm coming to realize is nerve-racking, first surveillance CT is tomorrow). There are two types of support groups: ones made of cancer patients centralized around cancer in general (or a specific cancer type) and ones made of friends and families centralized around the patient (mine's team RaubStrong, complete with blue glow in the dark wristbands that we all wear at our new college homes across the country!). Both are very important because the one's based around cancer allow you to keep up to date on medical terminology and help you be knowledgeable about your cancer but can also provide some emotional relief. The personal support group is more emotional and mental but for obvious reasons, they're not as likely to be knowledgeable about the details of your cancer and have an in depth conversation with you about various aspects of your treatment.

TC patients get jipped a little with the Cancer support groups thing... The fact is, there are only 6000-7000 of us diagnosed around the world every year as opposed to the 180,000 breast cancer diagnoses and 217,000 prostate cancer diagnoses annually. What we do have are online support groups, MacMillan has a great testicular cancer support group/forum (as well as a general community) and obviously there's the forum that I personally find most helpful, the one on tc-cancer.com. General cancer support groups are always a great option but it was never really my thing.. TC's kind of odd in that it's a young man's disease. The average age at the general cancer support groups tends to be a little over the age of people I relate to. I've been to one though once and they were all very nice! Overall, in my opinion every TC patient should ideally have two groups, one filled with friends who know very little about your cancer who just want to hang out (and can provide an escape) as well as a group very knowledgeable (preferably other patients) who can give you tips on how to cope as well as answer questions and even turn you to the right people!

Guest Post #2
This article was sent to me by avid cancer advocate, Mr. Trevor Bradshaw about exercise during a BEP Regimen.




Exercise and a BEP Regimen
A BEP Chemo regimen is not a pleasant experience- there’s no way around it. At its heart it’s a grueling, miserable process centered around lying around or standing at a bed for hours on end while poison shoots into your veins and it often leaves patients depleted and exhausted both mentally and physically. With that in mind it may seem as though physical exercise would be the last thing anyone undergoing a BEP regimen would want to undertake- but it’s actually one of the most important keys (along with drinking A LOT of water) to getting through the experience as easily as possible. No one would expect a chemo patient to go out and start lifting weights like Arnold Schwarzenegger and it wouldn’t be healthy either, but a moderate, low intensity workout absolutely is. Here’s a few that are highly recommended:

Walking
Walking (or jogging if you feel up to it) is a great exercise for a handful of reasons- chiefly among them that it’s remarkably effectively form of cardiovascular exercise, which is perfect not only for getting your blood pumping but also for helping to fight off the increased risk of blood clots due to vein thombrosis. A good trick is to either use a treadmill with a heart rate monitor or get a wristwatch style one and try and keep your heart rate at about 50-60% of your maximum heart rate. Jogging has also been reported to alleviate stress, anxiety, and naseau all of which are nagging side-effects of chemo treatment. Walking or jogging can be more dangerous for testicular cancer patients than ovarian cancer patients as vigorous running has been known to cause testicular pain in some TC patients, but remember- this should be a very low intensity work-out. The other great thing about walking and jogging is that it gives you a chance to head outside for a little bit and get away from that bed!

Swimming
Similar to walking, swimming is a great exercise to combat the effects of BEP primarily because it’s a full-body cardiovascular exercise, but swimming also is a noted form of strength training as well. Because swimming is one of the gentlest forms of strength training there is it’s often recommended for BEP patients with five day regimens to combat the larger amounts of sitting, standing, and laying around. Just like walking a low intensity swim can ease nauseaa, relieve anxiety, and increase stamina. Additionally, ovarian cancer patients with acute pelvic pain sometimes report that the buoyancy of the water can alleviate the agony.

Yoga
Yoga, another gentle, low intensity workout may be the best exercise to fight the affects of BEP chemo. Yoga has been proven to have a significant positive effect for cancer patients, decreasing fatigue, depression, anxiety, pain, and nausea. The best part is you can practice many yoga positions anywhere- including while you receive your treatment! For example in the Savsana pose you lay on your back with your legs slightly apart and your arm slightly away from your body, palm upwards. You should keep your head from tilting backwards (you can use a blanket under your head if you need it), and alternating breathing slowly through each nostril. The key to the pose is to be comfortable and lie quietly without straining for as long as possible.

All in all there’s no doubt that moderate exercise is an integral part of getting through a grueling BEP regimen. For whatever cancer- from testicular cancer to ovarian cancer to testicular mesothelioma- BEP is a tough love treatment that leaves you feeling drained and exhausted. But exhaustion related to chemotherapy is radically different than normal exhaustion, as anyone who has undergone BEP can attest to; sleep and rest don’t make you feel refreshed. Instead the best way to boost your energy, as paradoxical as it may sound, is exercise.


My thoughts: I definitely found this guest post very interesting (we all know I'm a bit of a health nut). I completely agree with what Mr. Bradshaw has to say, that being that BEP chemo patients should seek out low stress physical activities that are not too taxing cardiovascular-ly. So a couple things I'd like to add on/explain/you-get-the-idea.

1. "Vein thrombosis", what is it? Vein thrombosis is the formation of blood clots in our arteries. Deep Vein Thrombosis (DVT) is the most commonly experienced form of vein thrombosis. It occurs in deep veins, most commonly in the leg. These blood clots occur due to a lack of activity on the person's behalf, causing the clot to have the time to form as the blood flow "settles". These clots, if left untreated can result in pulmonary embolisms as they can become dislodged from their original location and travel through the artery up to the lung (for those of you who've never heard the term pulmonary embolism... it's not a good thing to have). Hence why continual movement is very important, it prevents the blood from settling.

2. Swimming: though swimming is a great form of exercise, there is one thing to be very careful of; any bacteria in the pool. This is because as a chemo patient, you are immuno-supressed and thus more susceptible to getting nasty skin infections and other conditions from being in a pool because your body cannot fight off these bacteria like it normally could.


Special Topic #1

Alright so this one's just by me but I think it's an important and very controversial topic that has not yet been addressed on this blog. What is it you may ask? The use of medicinal marijuana during BEP chemotherapy, for TC patients in general, as well as cancer patients in general (surprisingly, each has it's own answer!)

To preface this statement: I am not a marijuana user nor have I ever used marijuana for recreational nor medicinal purposes. The sources I am drawing my information from include the tc cancer forum (reference the resources section) and educational websites with solid reputability.

Ready?

For cancer patients in general: For cancer patients in general who struggle with appetite as well as pain during chemotherapy, yes I do feel that the use of medicinal marijuana is permissible to 1. increase the appetite of the individual preventing weight loss (which could delay and/or throw off a treatment schedule) and 2. ease pain (because nobody should have to be in pain if there are no consequences to their easing their pain.)

Pretty straightforward? Here's where it starts to get tricky..
For TC patients in general: In my opinion TC patients in general (regardless of what treatment they are receiving) should not under any circumstances use marijuana or any other cannaboid. Why? Because Marijuana indirectly affects one's HCG count through chemical reactions in the body and can raise it. What does this mean? As TC patients (and survivors), many of us live by our HCG counts. A high HCG count means a relapse (or can keep you from getting an all clear) even if no tumors are visible throughout any of your scans (the cells may not be densely grouped together enough to show). If using marijuana, doctors may not be able to distinguish whether or not you actually have cancer, and may choose to err on the safe side and prescribe more treatment for you. Long story short, marijuana usage can GET IN THE WAY OF YOUR TREATMENT. This is, in my humble opinion, a good enough reason to avoid using marijuana for medicinal purposes, especially when so many other options are available. (Stanford Medicine, Cancer diagnosis. To see "HCG" scroll down)

For BEP patients: Same story as TC patients except one more thing(for you ovarian cancer patients out there): Bleomycin kills your lung capacity, that's why your doctor may even have you take a Pulmonary Function Test (PFT) before/after your treatment to see if your lungs are still in semi-decent condition. Inhaling smoke would not help that. I am not suggesting that one can get lung cancer from marijuana smoke, just that smoke is not good for the lungs and that since you're already taking bleomycin, why cause your lungs more stress? To the idea of consuming marijuana in the form of edibles and/or by use of a vaporizer, my concerns over a false positive for TC patients still stand.

Anyways, these are just opinions on the proper course of action based upon research as well as experience. If you are consulting the use of marijuana to ease nausea/pain, please have a serious discussion with your doctor before proceeding. (In the US at least) Marijuana is a controlled substance (except for medicinal use in a couple states but the federal government actually has authority over the domain of drugs so instead of answering to the state police, it's the DEA which may come knock on your door.) and should not be consumed without consideration of all possible consequences.
~ Raub Dakwale




Sunday, July 24, 2011

Days 15-21: How To Finish Strong

Day 15: Went in for my weekly blood test, nothing big happened. My veins have held up pretty well over chemo, I didn't have to switch to a portcath! One thing though: when I got my bloodwork back, my hemoglobin and RBC counts were both a little bad and I let it psyche me out to the point where I MIGHT have gotten "placebo fatigue". Knowledge is both a power and a burden, be sure to always check yourself!

Day 16: Today was an interesting experience. I went in for my final chemo treatment and unfortunately my nurse completely missed my vein the first time around. Usually this isn't a problem except that we thought she was "there" (as in had the iv placed properly in the target vein), and dressed the IV. 5 minutes later my forearm was in a world of pain as the saline hydration drip was pumping into my tissue/muscles rather than a vein! Had I received any of my bleomycin through this IV line, the toxicity likely would've 1. burned my skin, 2. caused mutations somehow, 3. nobody but scientific researchers know 3 and let's keep it that way.

So how can you avoid this? Signs your line is misplaced and needs to be removed IMMEDIATELY:
1. Pain around the site.
2. The area around the site looks puffy or swollen.
3. pressing the area around the IV site makes a squishy sound (which still haunts me).
4. You're not getting a blood return in the IV when the nurse checks for it.

Alert your nurse when these happen because it is imperative that no chemo is pumped into you if your IV isn't properly placed. If it's just saline the pain/puffiness will easily be absorbed within 5 minutes and you're good to go.

Day 17: That last hit of bleo was a double edged sword; it was a huge mental victory knowing no more toxic drugs would be entering my system... but then that bleo shot knocked me down more than any of the previous ones had. Day 17 was spent just relaxing in front of the TV, with this weird taste in my mouth (from the bleo) and that taste resulting in a little nausea.. sort of like you're constantly forced to taste a food you don't like and when you drink water/swallow your saliva, it's like you're swallowing that food.. pretty unappetizing.

Day 18: The bleo's got a pretty steady grip on me still, I actually had to take another Reglan today just to make it through without wanting to throw up. Unfortunately whether I wanted to or not... yeah. Though you may not feel it, during chemo there is always a possibility of the nausea instantly overwhelming you or your stomach rejecting something for no good reason.. such is life under the chemo spell.

Day 19 and 20: I've finally come to terms with the fact that I have/will have for a while, mild peripheral neuropathy in my hands, no biggie though. To be honest, the only thing to report is that I'm living real life again at this point with two exceptions: 1. I'm always a little tired (like literally eternal tiredness) 2. I'm really out of shape and can't do much physical activity without getting tired quickly.

Day 21: Hung out with some people as usual and tried to see how much physical activity I could take playing spikeball. The answer? Not much, and I think that's the most annoying part of this whole process. my new 100% is like 60% of my old 100% and it's really hard for me to even get to my new 100%. My mind is now wandering to my CT scan tomorrow morning.

And that's BEP Chemotherapy for you. Week 1 is the roughest, Week 2 is okay, and Week 3 is the most bearable. If you ever have any questions, feel free to post a comment or reach out to me at sdakwale11@gmail.com and I'll be happy to answer. I get an email anytime anyone comments and I check my email often. Plus I'll probably read through this every once in a while to remind myself that though sometimes things may seem bad, EVERYTHING is manageable if you're willing to take the time to understand and willing to work on the details.

Because I watched Toy Story 2 yesterday: "To infinity, and beyond!"

Sunday, July 17, 2011

Day 9- Day 14: Returning To Life, One Step At A Time

Hey guys, sorry I haven't posted much, there just wasn't much to update anyone on and I've been feeling back to 100% since Day 11!

I guess let's do some notable highlights though.

Day 9: I got off Zofran, but stayed on Reglan 2-3 times a day. Nausea 4.5 Fatigue 2.5 Oh, and I received bleo today, no side effects whatsoever other than the fact that the veins in my arms are tired of being stuck, seriously. As standard with bleo, pre-medication with tylenol as well as 1 dose every 6 hours for 24 hours after.

Day 10: Felt that last bit of my energy come back and I just kept on enjoying my summer vacation. Nausea still not great. Nausea 4 Fatigue 1

Day 11: I actually went to California Great America with a few good friends.



I rode thrill rides and stuff too without getting nauseous! Major personal win. Nausea 2.5 Fatigue 1. Did this all day and then went to the Harry Potter premiere later that night.

Day 12: Nausea 2.5, Hung out with my friends in the pool (a little risky so be careful, watch out for infections and if you get a scrape, immediately get out of the water).

Day 13: Road trip down to Santa Cruz for a day with some friends. Something interesting actually did happen here which I should definitely discuss with you. So I was enjoying my day with my friends and we were hanging out at the beach, which for those of you not near Santa Cruz, California, is awesome and also located right next to a boardwalk amusement park. I was walking on the beach barefoot as we were searching for a volleyball court when all of a sudden I felt a prick on the bottom of my foot. A piece of wood in the sand had its jagged edge pointing up and had made a 1 cm cut across the bottom of my foot! and I was barefoot in the sand so my kneejerk reaction was to move put my foot down in a different part of the sand. So now I'm a chemo patient with a weakened immune system with a cut on the bottom of my foot that is filled with sand that's been who knows where. My mind immediately created a list of things I had to do in the next 30 minutes to reduce the possibility of infection:

1. Keep calm, flipping out over a cut will never do anything, I reminded myself that my platelet and WBC counts came back really nice this week so the bleeding would soon stop and that my body could most likely handle an infection IF it came.

2. Wash the cut. Priority number 1 is to do as much as you can as quickly as you can. So I hopped into a restroom on one foot (remember I'm still barefoot and there's no way I'm letting my cut touch that ground) and washed it off with water as well as made a makeshift pressure bandage with a fresh roll of toilet paper so that when I put a sock over my foot, The sock wasn't actually touching my foot and and bleeding (if it occurred) would get caught on the tp.

3. Get a clean sock over that foot. Had a friend of mine bring me my socks from where we were on the beach.

4. Get to the boardwalk's first aid office, run an alcohol swab over the cut, and bandage it. Check, check, and check.

I also took 2 extra alcohol swab packets and 2 bandaids with me and as the day progressed I checked on the cut two more times to make sure 1. I had gotten all the splinters and sand out and 2, it wasn't getting inflamed. Each time I re-bandaged the cut only after an alcohol swab.

Lesson of the story: During chemo, don't underestimate anything, treat every situation carefully; it's the little things that get you.

Oh, one other little thing: On the way back to Santa Cruz we went to Buffalo Wild Wings for dinner, luckily I've been keeping a Reglan on my person at all times in a plastic bag to stay ahead of potential nausea. I had to have it before we even sat down at the table but by doing so, I avoided a potentially bad situation.

Day 14: Pretty uneventful day again. I laid in bed all day reading Ender's Shadow, one of my favorite books, for the 10th time and it never ceases to interest me. The reason for laying in bed was to give my cut as much time & room to heal as possible. Also changed the bandage on it to a more pad-like bandage with more coverage on it because I knew I'd be walking around later that night (with socks on) at my friend's going away party, I'll take the time right now to say (again) Bye Xanth, hope you have a great time in SB! As you can see, I am back to 100%. The rest of this cycle should by all means be a breeze unless complications from my cut or some new injury/illness arise.

Day 8: Blood Tests During BEP Chemotherapy

So on Day 8 the pill schedule changed again:

Morning: 1 Pepcid
Night: 1 Pepcid
As Needed: Zofran (up to 2), Reglan (up to 3)

I finally felt as if my body was settling down. Unfortunately it chose to settle halfway between the swamp picture and forest picture but I'll take it! The thing about blogging about day 8 is that chemo recovery is nothing but a waiting game; you live your life to the fullest extent possible and wait for the side effects to slowly subside.

On day 8, I didn't do much; went to the library to pick up some books to read (Ender's Game and Ender's Shadow by Orson Scott Card, my two all time favorites) came home and then went to get my weekly blood test, which since we haven't covered yet, we shall now.

If you're reading this blog then you've undoubtedly had a blood test in the past (the one that helped diagnose you) and so I won't delve into the basics of what a blood test looks like. Long story short, the tech finds a vein on your arm, sticks you with a needle, fills up some 5cc or 4cc vials, and then slips the needle out and gives you a cotton ball & med tape dressing.

Things to remember as a chemo patient having blood tests:
1. you're getting stuck with needles all the time for your chemo treatments. this means your veins will be thinner, more fragile, and overall harder to stick.

2. Because of this, as a chemo patient NEVER EVER have a student draw blood on you. If a student tries to, ask for a professional and note that you're an oncology patient. They'll understand.

3. Drink 50 oz of water between 4 and 2 hours before getting blood drawn. Hydrated veins mean happy, easy to stick veins. easy to stick veins means less getting jabbed!

Bloodwork that should be ordered during a chemo Cycle:
(only before day 1) Day 0- CBC+Metabolic Profile, AFP, LDH, HCG, Creatinine, AST
Day 8- CBC+Metabolic Profile, Creatinine, AST
Day 15- CBC+Metabolic Profile, Creatinine, AST
(This IS 'day 0' of the next cycle)Day 21- CBC+Metabolic Profile, AFP, LDH, HCG, Creatinine, AST

What are these tests?

CBC= a Complete Blood Count (get it with a WBC differential too). This test finds out everything concerning the make-up of your blood from your red blood cell count to your white blood cell count to your platelet count. On top of that, a WBC differential will also figure out what the concentrations of different types of white blood cells are in your blood.

Metabolic Profile= Inc. sodium, magnesium, potassium, and calcium levels in blood. Cisplatin causes fatigue by messing with these levels so it's good to monitor them.

AFP= AFP is a normal fetal serum produced by the liver. It is very evident in fetal plasma but then quickly dissipates after birth. Because you're not supposed to have much of it in healthy adults, it is a very good tumor marker, or cancer indicator.

HCG= HCG is a hormone found in pregnant women. It is the same hormone that is detected for in pregnancy tests, and also the one that causes nausea, morning sickness, pregnancy cravings etc. Because men don't have babies they shouldn't have this hormone and so it is another good tumor marker for testicular cancer as it will be elevated should TC be present.

LDH= Lactate Dehydrogenase is a third tumor marker but not as much for the specific type of tumor, rather for the sizes of the tumors (tumor mass).

Creatinine= Creatinine is left over after the muscles break down creatine phosphate. It is mainly filtered out by the kidneys. Because Cisplatin is nephrotoxic, monitoring kidney function is critical to prevent kidney failure should it get overworked and watching the creatinine counts is a good way to do so.

AST= This enzyme is generally found in low levels throughout the blood. When an organ such as the liver is damaged however, AST is released into the bloodstream to help repair the problem. Chemotherapy isn't exactly the best thing for your body, so monitoring AST levels can be an indicator of possible organ damage.

Monday, July 11, 2011

Day 7: The Side Effects They DON'T Mention

So I woke up at roughly 8:30 on Day 7 and I definitely felt better than Night 6. However, I was still in the hole dealing with the following symptoms:

1. nausea (I'd rate it @ 5)
2. fatigue (3.5)

*might start getting a little uncomfortable but this is to help out future patients so...*
3. Gas - They don't mention this side effect much when they talk to you about chemo but ir happens. Here's how I envision chemo's effect on the GI Tract.

Pre-chemo: Imagine a pristine forest with a thriving but peaceful ecosystem, lots of greenery blue skies, and a clearwater stream running down the middle of the picture.

Post-chemo: The forest is now an orange skied apocalyptic wasteland, the ecosystem has mutated and that stream is now this slow-moving toxic sludge. This is the image that comes to my mind when I think of what could possibly produce the amount of gas in my system on Days 6 and 7. Eventually though as with all things, if you heal it right and give it time, it'll be beautiful again.

4. Constipation - Side effect of Zofran. No big deal but stay ahead of it or there's a massive pain penalty involved.

5. A general uneasiness.

Day 7 wasn't that eventful. I think that's actually a problem for some people. It was for me. I kept looking at the clock and wondering to myself, why is nothing happening? I wouldn't be annoyed about that except for the fact that i didn't feel good yet. And gah I wanted to feel good. By around 8:30 pm that night I was chatting with an old friend online and I had a minor (really obvious) epiphany that helped me just keep chugging along:

It is okay that 3 hours passed and nothing changed because you know for an absolute fact that things will get better. Therefore, those 3 hours are 3 less hours you will ever have to deal with this and the 'better' part is now inevitably closer.

Problem solved.

Did I string together a bunch of obvious truths? yes. Their simplicity is their beauty, try not to forget that.

Sunday, July 10, 2011

Day (and night) 6: No Man's Land

This night is like a boss level on the hardest setting of a game, reserved for those truly crazy enough to try it. More in the morning about day 6 & night 6.


Update-
Day 6:
Change to Pill Schedule- (will change again on Day 8)

9:30 AM:
1 Pepcid, 1 Reglan, 1 Zofran

3:30 PM:
1 Reglan

9:30 PM:
1 Pepcid, 1 Reglan, 1 Zofran

Day 6 went by pretty well actually. During my last two cycles I'd come to realize that talking on Day 6 was always annoying because my mouth did NOT want to move (probably a personal thing) so yesterday I camped out in front of the TV with roughly 50 otter pops and watched almost an entire 14 hour Harry Potter marathon, trying to wait out this storm out (eating small meals every 2-3 hours and moving around during commercials).

It actually worked pretty well and I was feeling pretty good so I decided that yes, I was doing well enough to go sit in a restaurant (Buffalo Wild Wings) with my friends for an hour or two. Bad Decision. I think a "rule of chemo" that should exist for recovery after the intense part of a BEP cycle is stay at home. Regardless of how you're feeling, stay inside your own house. Within 2 hours I was back home, laying on my side, curled up in bed. And from there the night just got weird.

1:20 AM- I woke up with a gassy feeling in my stomach as well as a huge pressure in my abdomen. It being more discomfortable than painful, I just sat up and stretched a bit *mistake*. Stretching amplified it. So I stopped moving and then 5 minutes later I used the restroom and was better. Okay, I thought to myself, just focus on some inner peace and sleep it off.

1:50 AM- I'm still awake, just lying there very still. Why? On my way back into bed I passed by my copy of Lance Armstrong's It's Not About The Bike and my mind began to wander... What if BEP wasn't enough to get me an all clear? I knew what the next lines of treatment (TIP, VIP) were like and they scared me. It wasn't the chemo part of them that scared me (though it's going to a hell of a fight if my situation ever comes to that), it was the fact that I'd be an inpatient and need a catheter. As someone who, at the beginning of my chemo cycles, had to have his IV covered up during treatment the thought... it drives me insane.

As a person I love to be challenged. I crave being down at the start of the final round. As an athlete I willingly train myself to take in as much pain and discomfort as possible and just keep begging for more. As an 18 year old healthy guy I love pushing myself to the limit and working through things to live MY life. Nausea? Bring it. Fatigue? Yeah, I've run suicides for hours on end before. You want to run a plastic tube up my d*ck? ARE YOU KIDDING ME?! How the hell do you even get that in there?

And that was that. For about an hour in the middle of the night, I was starting to have a mental breakdown for the first time. It's those damn 'what if' questions that get you. As hard as chemo seems, it's not the chemo that's the problem; it's the darkness of all the stuff before and after chemo.

4:00 AM- I fell asleep for a little bit and then woke up feeling restless but fatigued. It was the most frustrating feeling on the planet; I wanted to get up and move around but it was as if I had no command over any part of my body to do so. Add in the nausea and gassy stomach.. yeah. I found it within myself to get up and walk downstairs by 4:30 in the morning and I grabbed 10 otter pops out of the freezer, sat down on a couch and ate them slowly; 1 by 1, trying to focus on anything but the words cancer, chemo, bep, nausea, tired, why, (I can add in a couple swear words here), and pain. Eventually though I did think of something that helped me pass the next 30 minutes. Harry Potter probably saved my sanity that night:

You know how in the 3rd Harry Potter movie, when Professor Lupin's trying to teach Harry to conjure a Patronus charm, he has him think of a happy, strong memory to use in fighting the dementors? YEAP, pulled a harry potter and fought off my chemo side effects. (The most damningly effective part of my support team was the fact that I knew they existed.) I apologize if some of you don't understand this reference, it's a great series, read it!

At this point it was 5:15 in the morning, I was exhausted and clambered into bed and fell into a deep, somewhat relaxing trance-like state. I figured I'd need whatever creativity I had left in me to tackle Day 7... because I knew this one wasn't over, not by a long shot.