Done with Chemo + Radiation + Updates

I finished my last treatment of chemotherapy this past Thursday.  Yay me.

The pneumonia is pretty much gone now, and my breathing is at about 95% of what it was before, soon to be 100%.

I'm currently recovering from my last treatment, with the usual side effects: lack of taste, fatigue, weird numbness in my toes and fingers, and still pretty bald.  Although- this is the last time I have to go through those.  I should be fine in a few days from now.

All in all, I did VERY well with my side effects from ABVD.  I was fortunate enough to not have ANY nausea, always had high white c ell blood counts, and minus the pneumonia didn't have any secondary illnesses.  Yay.

He's getting tired of me being at the house so much, he wants his personal space.

My New Timeline:
I get 1 week to recover from the last treatment (which I'm in the middle of now), plus 2 weeks to recover in general from my 4 cycles of ABVD before I start radiation therapy.

I meet with my new other Doctor on March 8th 2013, a radiation oncologist, for a consultation.

I have my PET scan (finally) on Tuesday March 12th 2013, and get the results from my regular oncologist Doctor on Thursday March 14th 2013.   Which hopefully will show no activity.  With the way I've responded to treatment, that's most likely the case as my last swollen external lymph node I had disappeared about 2 months or so ago.  If there is a small amount of activity- that's fine as well, as the radiation therapy will take care of it.

I should start radiation therapy sometime around the week of the 18th of March, and it runs for about 4 weeks, 5 days a week every week.  The appointments however are a hell of a lot shorter than chemo.  Chemo lasted 3-4 hours, while radiation should last 10-20 minutes each, or as my oncology nurse said "it will take you more time to drive there than be treated."

After that, I get another PET scan, however, I have to wait 2 months before I get it, as the PET scan relies on radioactive markers to be able to visualize any activity (by way of drinking the more disgusting "milk shake" I have ever tasted), and the radiation therapy throws it off.  So some time in the middle of June will be my last PET scan for treatment AKA my first regular PET scan for the next 5 years.  I have to have 1 PET scan every 6 months for the next 2 years, and 1 PET scan a year for 3 years after that.  If it all remains clear during that time I'm considered cured.  Yay.

Hopefully at some point around the middle of May I can return to work, and gleefully send more people to be miserable at safety training classes.  Yeah, I'm that guy.

(I'm also totally buying that really expensive Scotch for when I'm labeled "in remission" not when I'm labeled "cured" as I would rather have the Scotch now than 5 years from now... I'll just buy another bottle in 5 years anyway, can never have too much single malt)

Radiation Therapy- Do I Need it?
Many people have asked me this.  Also many people who are newly diagnosed will ask this as well.  My answer is:  YES.

Chemotherapy kills as much of the cancer cells as possible, not just trying to make you feel lousy.  However- you have have to have ALL of the cells destroyed.  Radiation is sort of/kind of "mop up" after chemo.

A lot of Hodgkin's patients wonder why they have to have radiation after finishing chemo with a clean PET scan that shows no activity of disease. The reason is that a PET scan is a great diagnostic tool, but has it some short comings.  It can show no activity of disease, but that doesn't mean there aren't some small amount of cancer cells present, and it can be notorious for false positives.  You don't want to do chemo, and skip radiation if there are a some cancer cells still around, as they could eventually continue to divide and grow, making chemo kind of pointless.

Radiation therapy is the "we need to make sure we got it all" treatment.  And really- that's a good thing.  You don't want this to pop up again later.

Also please note: Not everyone gets radiation therapy.  It all depends on stage, and other factors.  Some people if they are in a very early stage, ONLY get radiation.  For people who are in a very advanced stage, they have a long cycle of ABVD and even more radiation. Some people are in earlier stages like mine, and have long cycles of ABVD and no radiation as well.  If for any reason you're wondering why your oncologist is doing or why they decided to pick whatever for treatment- just ask, you'd be amazed with the answers you'll get if you just simply ask.

My Hair (or lack thereof):
So with my extra week of rest before my last treatment due to pneumonia, my hair actually started to grow back.  Mainly my eyebrows (which are looking kind of thin, but are still there).  I have a bunch of tiny new eyebrow hairs growing... and they're a medium brownish red color.  Which is normal, when your hair grows back it usually is a slightly different color and texture than before- which will last anywhere from 6 months to a year before going back to the way it was.  The initial texture I'm told is kind of like a weird baby hair softness.

There really isn't anything you can do to speed up the growth, and "everyone is different."  You're basically genetically pre-disposed with how fast your hair will grow back.  With some people it grows DURING treatment, some takes 2-4 weeks to start growing, and others take about 2+ months.

Another weird thing is I have about 30 or so hairs on my head that never fell out and kept growing all through treatment, albeit growing about 1/4 the rate my hair usually grows at. They all have a strange thickness to them.  They have a "wavy" thickness, it will be thick then thin repeated a few times, the thin parts are from when I had ABVD treatments, and the thick parts are from when I was recovering the week after.  It's like a weird tree-ring of memory.

I've also got a weird white peach fuzz of hair slowly growing on my head.  We'll see if they match my eyebrow color in a few weeks.

Last Chemo Pushed Back a Week

So tomorrow was SUPPOSED to be my last chemo session- BUT it got pushed back a week to next Thursday 02/21/2013.

Why?

Because I came down with pneumonia this past Monday.  I wasn't feeling very well in the morning, pretty sluggish and had a dry cough that kind of persisted through the day.   In the evening I took my temperature (as you should do every night on ABVD) and I hit 100.7F.  As your doctor should have told you, when you take your temp every night if you hit 100.5F you have to call the doctor no matter what time it is.  As it's a sign of infection- and because of a compromised immune system, you're not going to be very well suited to fight it, especially if you have low white blood cell counts.

So I called my doctor, and interrupted his dinner I'm guessing- and was given the instructions to take Tylenol to lower my fever, and if my fever kept going up in temp- to just go straight to the emergency room.  He also told me to call in the next morning on Tuesday with how I was feeling, and go from there.  My temp Monday night after Tylenol was way down to 98.6F.

Tuesday morning came around... and I felt pretty shitty in the morning, hot and fatigued   I took my temp, and it was 101.3F.  Called in to my doctor and got "you should come in right now."

So I spent all morning and half of the afternoon at the hospital on Tuesday.  I had a CBC, 2 blood cultures, a couple of swabs, a few chest x-rays, and had my oxygen levels checked by trotting through the office wearing a facemask (so I don't get other patients sick) for a few laps with the head nurse holding the device I was hooked up to trying to keep up with my speed walking must have been pretty entertaining for the other nurses and patients to watch (I think the nurse was more winded than I was).  My white blood cell counts are very good and high (Though they have been through all of my treatment), my oxygen levels were very good, and my blood cultures and x-rays... said I had pneumonia.  However I apparently hadn't had it for very long, or because my white cell counts are super high- it just took it awhile to pop up with symptoms to knock me on my ass.

So my doctor prescribed me some antibiotics, as he's pretty sure given my symptoms I have the garden variety bacterial pneumonia. So I should start to feel better in 2-3 days, and should be totally fine in about 6 days.  So I have to call to check in tomorrow Thursday with how I'm doing- which is pretty good as of Wednesday today.  My fever is down and my cough is subsiding, but mainly I have a lot of energy and don't feel like crap.  My breathing is a bit shallow still, and I can't do anything strenuous. My body temp is well regulated now, instead of going haywire with hot flashes and chills. Not bad for only 1 1/2 days of antibiotics, and I'm feeling much better already.

Because of my pneumonia though- I had to have my last treatment pushed back 1 week.  My doctor could tell I wasn't very thrilled by that news.  This is how that conversation went down:

Doctor: He's pretty upset about having his treatment pushed back a week.
Me: Yeah- it's not what I wanted exactly.
Head Nurse: Well, do you know what would happen to you if you did have treatment while having pneumonia?
Me: ...yes.
Head Nurse: (laughs) Well, there you go.

Having Pneumonia and a treatment of ABVD would be very bad, especially on my lungs. So I'll have to wait.

Wendy took pretty good care of me when I was down for 2 days.  She's making a special Valentine's day dinner.  I won't be all chemo drugged out luckily... just you know, lightly pneumonia'ed out instead.

Oh, I keep forgetting to put up a picture of  a damn cat.  So here you go. This was Miles my cat when I first got him about 4 1/2 years ago, I think he was about 12-14 weeks old.  He was pretty awkward looking:

My Last Chemo Treatment + Bowling + Another Atricle

I have my last treatment coming up this Thursday 02/14/2013.  Wendy is going to surprise me with dinner that night.

The way my timeline of treatment looks now:

• End chemotherapy on Thursday 02/14/2013
• 2 Weeks rest Through 03/01/2013- During this time I'll have a PET scan to see how everything's gone.  Hopefully there will be no more disease left, and if there is a trace amount, it will taken care of with radiation.
• Start Radiation roughly 03/04/2013 through the end of the month 04/01/2013.
• Then I have to wait around 60 days (I'll have to confirm this with my Doctor) for a final PET scan as radiation interferes with the scans. So around June 2013 I'll get my PET scan.
• Then after the PET scan, that's when I will be told if I'm in remission or not. roughly around the middle of the first week/middle of June.

I don't know when I'll return to work, possibly I might work part time during the 60 days, depending on how much fatigue I have from radiation- but if the fatigue is anything like my chemo, I probably won't return to work until sometime in June (!).

I also went bowling this weekend:

I'm terrible at bowling.

Here's another article worth noting:

• This excellent article by a research scientist in the UK about science conspiracy theories.  The comments on the article are pretty annoying- but she actually replied to most all of them, minus the crankiest ones.  She and I also pretty much said the same thing about "everything being a chemical" in my previous post as well.  

Here's a nerdy science joke. Q: Hey, what's the word for multiple instances of anecdotal evidence?  A: No data.

Other side effects:

Although I'm just about done, I have a few new side effects popping up:

• Numbness/tingling in my fingers and toes.  The doctor had been asking me for a month if I had this sensation- I had not, until about a week and a half ago.  It's a little weird. I'm told that it's a pretty normal side effect after the amount I've had.
• Either really hot or really cold when sleeping- before I eventually get comfortable.  This apparently happens a lot too.
• Super dry lungs.  Try to stay on top of being hydrated.  Go through some dry coughing fits in the morning when I get up (takes forever to get up), and sometimes before bed.  My lungs always feel pretty tired, which hasn't made me very active in the past month. This is a common side effect of the chemo drugs as well.
• Fatigue last past my "bad week."  It's not too terrible, but it lingers quite a bit through my "good week."

Otherwise, I'm not feeling too terrible, although not as well as I was a couple of months ago- the effects of ABVD are cumulative so it was all to be expected.

Updates + Natural vs. Chemical vs. Conspiracy Theories

Updates:
Well I had my next to last ABVD treatment on Wednesday, so now I'm on the up hill to feeling better, as it usually takes about 4 days of feeling bad, and a bout 4 days of slowly feeling better before I'm good.  Although I do have the following:

• Tired even on my good week, but only a bit.  The side effects of ABVD are cumulative, so I'm tired longer.
• Lungs are getting a bit exhausted, as it's a side effect of V, not terrible- but I could see that if I did get an infection and had to cough a lot- it would REALLY suck.
• I only have to do one last treatment.

Support Forums:

I frequent a Hodgkin's Lymphoma support message board on the internet, as the in-person cancer support group for my hospital is for basically any cancer (not specifically one) and Hodgkin's Lymphoma is not that common... and you know the group is made up of 98% old people who don't want to hear how not too bad I'm doing.  Whipper snapper. I don't comment or post on it much, but I read most all of it. But: I'm able to have the treatment I do because of my job by giving me full medical leave, and outstanding medical insurance, and when you put into consideration I was pretty healthy before hand and I'm relatively young (yes I remember when My Bloody Valentine had their previous album come out), however I have to admire some of the people who are on that forum, as many of them have children, can't take 100% off of work, or are a single parent or a combination of all of those. I can't imagine having kids and recouping with children in the mix. As I've said before: I'm pretty lucky in a lot of regards.  One of which is I only have cats to take care of (I swear I'll clean your sand-poop box eventually. To be fair I've always been pretty bad about cleaning the cat poop box), and I'm able to just simply sleep when I need to without an alarm (I won't lie: it's awesome... minus the cancer bit and feeling shitty). So  Hats off to those people going through chemo with kids and other life stuff, you just have to do what you have to do.  

I should also mention for newly diagnosed people: Positive mind set helps a great deal, in pretty much anyway you can get it, whether that be with "good vibes," prayer, sacrificial goat slaughter, wishing horrible things to happen to your enemies, or keying cars- really do try to stay positive however you need to.  It may also be worth mentioning: do what you need to do, so if say you have someone beating down your door to knit you a hat while on your head in order to get it fitted correctly, and it's not beneficial to you- by all means tell them to back off.  Basically: it's all about you and how you feel, being a bit selfish is okay.


Natural vs. Chemicals Vs. Crazy:
As I said in my last post: "the worst part of cancer is other people."  It really is true, the "natural cure no chemicals in my body big pharma money Nancy Pelosi is behind it all hiding the real cure to cancer" stuff.  No seriously, that Nancy Pelosi one was used by some whack job trying to convince me on the internet that there's a cure, but "they don't want you to have it."  Gah. From me:

"Cancer is a collection of a very broad group of a few thousand largely unrelated diseases all involving unregulated cellular growth; a disease of the chromosomes. It's NOT a virus, and all cancer is NOT the same. Hell, even within the same type of cancer, having a different stage of it can make it completely different, I won't even get into mutations etc. That's why there's no "cure for cancer" because that's just NOT the way it works. Treatment is based on protocols, and the patients go through the steps with their doctors watching carefully for the need to adjust treatment, to hopefully eradicate the cancer cells. Cancer research is about improving the drugs and protocols to get a higher success rate for that particular form of cancer."

Minus the fringe whack job people, largely why this is lost on people: lack of education.  Science education is terrible in America.  How do you explain to someone what a cell is who has virtually little to real understanding of what unregulated cellular growth is? Other than vaguely knowing what a chromosome is- how do you explain it in a meaningful way? Very slowly and concisely (it's the teacher in me- hence this blog) or you don't, you just fruitlessly argue with them on the internet perplexed as to why they keep bringing up Nancy Pelosi, and all of those people who have been cured "naturally"- that you can't find on the internet because they don't exist.  The cure rate for people who do alternative-natural  Hodgkin's treatments?: 0%

Here is an excellent article about Nutritional Supplements.

As far as chemicals vs. natural go: EVERYTHING Is made of chemicals, EVERYTHING.  Yes, yes, I know what people mean (or at least what they think it means) when they say that: no pesticides etc organic this and that- that's FINE, but everything is a chemical.  I was told by someone on the "internets" that they would never go through chemo and would "rather die than have those chemicals pumped into me"-  I sure as HELL let person have it, I don't suffer fools.  The article I linked above says it best:

"Another misconception is that if you are taking a “natural” product, it is somehow less likely to be harmful. Interestingly several important chemotherapies came straight out of nature. Taxol was isolated from the bark of the Pacific Yew tree, adriamycin was discovered from soil samples near an Italian castle, and vincristine comes from the Madagascar periwinkle plant. I’m not sure how that fits the idea that “natural” products are somehow safer than chemotherapy – in some cases they ARE chemotherapy. "

Many cancer chemotherapy drugs are synthesized from natural resources; plants etc.  There's a reason why scientist don't want to the rain forests to be slashed and burned, as there might be a marvelous cancer treatment waiting to be discovered. So in fact: they are "natural" or more accurately: "everything natural is a chemical."  The lines are not as clear cut as people think they are.

As far as diet: You should eat "anti-cancer food" because it's HEALTHY and tasty (well, most of it is), not because it will keep you from getting cancer (in an empirical reproducible manner blah blah), but so in the event that you might unfortunately get cancer- you will be healthy to go through treatment, and not have a terrible time of it.  A lot of the foods I eat are considered "anti-cancer"- heh, didn't work out so well for me, but I'm pretty healthy- and I ate those foods mainly because they're tasty (usually), and good for you.  I like pomegranates... because they taste good, and seriously good organic farmers market produce kicks ass.

I have nothing against naturopathy (heh, usually), but as someone on my my support forum said (sorry couldn't find the exact quote but his is it in a nutshell): "I'm a naturalistic healthy person, who took supplements and herbs and ate organic food in daily life as much as possible before I was diagnosed with cancer- but I'm not going the naturalistic route for cancer, because this is cancer not a cold."  The best way to spot a good naturopath: you go to them with a clearly serious condition, and they tell you to go to a hospital. I kind of chalk them up with chiropractors, some are great at what they do- but there's still the wacko's that think a spinal adjustment takes the place of all medicine.  I'm certain a spinal adjustment isn't going to help your cancer, and herbal supplements won't either.

As for the "trillion dollar cancer business:" Cancer is several thousand unrelated diseases, there is no "one cure" as it's several thousand diseases that needs treatments to be improved.  It costs so much BECAUSE IT'S A COMPLICATED BRANCH OF DISEASES. Basically: It's hard to fix, and like anything hard to fix- it's expensive to figure out how to, cancer itself doesn't exactly make it easy with mutations. These are people who don't understand what cancer even is, let alone treatment for it.

This is an excellent cook book for people going through cancer treatment or post cancer treatment.  IF you happen to live in a non-metropolitan area... good luck finding 50% of the ingredients.  However it is excellent.  On NPR the author stated:

"Does it taste good? If it does, eat it. If it doesn't, don't. Could this be more obvious? Well, you will be surprised at how much you will resist this seemingly simple bit of advice. "Oh, but I must eat X because of its anti-cancer fighting properties," you'll say. When you are in the throes of treatment, you don't really have to worry about that because, well, you already have cancer, and you are fighting the cancer by going through treatment."

As for nutritional supplements go, many people are surprised by this: my hospital and Doc are very open to them- you just have to run it by them beforehand, why?  Because it can interfere with your treatment drugs, and stop the chemo drugs from doing what they're supposed to do.  Many Oncology teams are open to nutritional supplements, because cancer sucks- they should know, it's their job to see it every day, and anything that can give you relief will help.


A side note for recently diagnosed people: 
You may have noticed I might be a bit "mean" to you- or at least very snappity, but really that's just me and my "do what you need to do" attitude. Really though- if you do have thoughts of doing a "natural cure" please don't- it WILL kill you.  Anecdotal quotes form people "cured" who aren't real, with a link to buy a book on "natural cures for cancer" is a pretty bad idea.  On the support forum I use, there's always a person every couple of weeks who inquires about a natural cure" for their cancer because they don't want to do chemotherapy, and always the members of the forum have to politely (heh actually most are not polite) tell them that it would be a "very bad decision."  Having cancer is scary (duh)- but don't let it cloud your judgement, and make a VERY bad life altering decision.