An abnormal return to normal

Today:  A story you may enjoy and one that made me feel a little bit back to normal....(warning, slightly gross)


Last night I ended up reading about 6 consecutive articles from a baseball magazine right before bed because Sarah was watching the Olympic Opening Ceremony and I didn't feel like watching that.  So, I went to bed thinking about baseball, I actually had a baseball dream, and when I woke up at 7:30am, I was still thinking about baseball.  I didn't want to get up, but apparently my tossing about was enough for Sarah to tell me to get up.


So, I got both of the dogs and went downstairs.   I let the dogs out uneventfully.  My hope was to read some more of my magazine, watch the dogs, and watch some MLB network.   So, I turned on the TV and sat down on the couch.  After about 20 minutes of MLB "Hot Stove," I let the dogs out again, since they wanted out, and I wasn't sure if Lucy was done with her business.


She wasn't.  She went #2 right in the middle of our yard.  Meanwhile, today it was more Cookie who was the agitator, and he wanted to rile her up.   In the short time it took me to go from the top of the steps of our deck, to our kitchen table to get a baggie, and back (roughly 12 ft round trip), they were going at it chasing each other.  It was mostly Cookie chasing Lucy.  By the time I got to Lucy's pile, I noticed it was not the normal, formed stuff.   Great.   I picked it up.


By the time I got back to our concrete pad at the base of the deck steps, I saw more of Lucy's pile, spread into the concrete.  So, now my mystery was which dog did it.  Hopefully not both.  It no time I found out  it was Cookie; when I picked him up he kicked me with his paw and now I had the poop smeared on my hoodie.  So, I picked him up and took him to the kitchen sick and washed off his paws with soap and water.  He managed to get it on 1 front AND 1 back paw.   After that, I carried him up to his cage and put him in there without his blankets.  Meanwhile, Lucy was still on the deck, and I absolutely HATE leaving the dogs outside alone - even for 1 minute - because of the local wildlife.   So, I raced back down to the deck to see if Lucy had any poo on her paws.  (She didn't).  So, I busied myself pouring hot water on the deck spot (and scrubbing it with a rock), and the smeared spot in the grass.  I then dropped the hoodie in the washer.


Finally, I left Lucy in our family room and headed back up to Cookie.   I'm making a lot of noise I'm sure, but somehow, Sarah never even came to see what was up.  When I got to our bedroom to scoop Cookie back up, she was still sleeping!   So, I took him to the other bathroom for a bath.  I had no idea if he had more on him, since when they chase, they can actually tackle each other into the grass.   So, I gave Cookie a bath, and he did great.  It was the first time in years I'd given him a bath, since Sarah usually does it.   In South Carolina, I used to put my swim trunks on and just jump in the tub with the dog, so I could wrestle them around to get them clean.  I maybe should have done that here with as wet as I got.   Cookie was done, and he wasn't really happy with me, but he was a lot cleaner.


Then it was Lucy's turn.  I wish I could've gotten a picture of the whole scene, since I bet it was funny, but I was too wet for the camera.  The only problem I had bathing Lucy was that she kept trying to lick the shampoo, and I was worried about what that might do to her GI tract.   She was done quickly, though, due to her short coat.   When we were done, I dried her off, and we went downstairs.   


What I had anticipated was going to be a lazy morning shaped up to be a very busy one.  However, the dogs did mellow out fast after their baths, and we settled down to watch some "Night at the Museum" on TV.  Finally, around 10am, Sarah came down stairs.  She had asked what I did all morning.   I was shocked.  "You didn't hear me bathing the dogs?"  "No, I had earplugs.  You bathed the dogs?"   She didn't even believe it until she smelled Cookie.  Amazing.  


Lucy and I finished up our movie and then Sarah went to the gym.   I don't have a picture of any of that, but I do have one from our walk so you can see how big she has gotten.  She was 30lbs on Monday at the vet.  Which is a little surprising because she doesn't like to eat.  She ate all her breakfast today, though.  Must have been all the excitement.

One Month Into Cancer

Yesterday was the one month mark since my definitive diagnosis.   I guess that makes it a reasonable time to take stock of where I am and how I'm doing.  Honestly, though, I'm not really sure.  I have no idea how my treatment is going yet.  I know tolerability, but not efficacy.


As noted previously, I had known my diagnosis for weeks before finding out "for sure," so while hearing it was still a minor shock, it wasn't a complete surprise.   Being diagnosed was almost a relief.  It could have been worse.  At least I knew why I was feeling so lethargic all the time.  It explained the weird pains in my chest.  On the other hand, so far the cure is worse than the disease.  My appetite is absolutely unpredictable.  I'm obviously more tired.  I've had some side effects.  Yet, I'd say my "disease symptoms" are only marginally better, if at all.  I don't have the subjective fevers and chills anymore (edit:  I don't have them nearly as often), but the chest pains (and arm pains) have racheted up quite a bit.  I'm not sure if that is better or worse.


Curiously, I've never questioned why this happened in an upset way.  Cancer happens.  My sister had childhood leukemia, so it wasn't like I am a stranger to cancer.  One cell simply acquires the wrong mutation and splits out of control, that's what cancer is.  Why did that happen to one of my lymphocytes?  Because I had Epstein-Barr virus?  Maybe.  Certainly not definitively.  The Leukemia and Lymphoma Society puts it interestingly in the "Hodgkin Lymphoma" book (available free here):

Most cases of Hodgkin lymphoma occur in people who do not have identifiable risk factors; most people with identifiable risk factors do not develop Hodgkin lymphoma.

So it hasn't made sense for me to question why.


Cancer and all things associated with it does trigger a variety of emotions, though.  The books were right about that.  Although I don't feel labile, I would say I've experienced a pretty broad range of emotions over the past month.  I've worried about how my treatments will make me feel.  I still do.  I feel disappointed in all the things that now make me abnormal, especially in terms of the fragility of the condition and limitations on my life now.  I feel frustrated at how slowly this is all going, although I'm already through one month and one full chemo cycle.  I've felt totally ignorant about what the far side of the treatments will be like:  What side effects might linger?  Will I even be lingering on?  Given statistics, you can't help but wonder these things.  One of the guidebooks I read stated that people will say things that offend you.  I consider myself extremely difficult to offend, and I think that remains true, although curiously, I might react differently or not at all to certain things.  I think I've become more understanding of cancer.  I've softened on some viewpoints, or maybe just become more understanding of them.  I will never pass judgment on the decisions a cancer patient makes or the things one might do to get through it.  On the other hand, I've felt extremely touched by the outpouring of support and the generosity of others.  Not all tears associated with cancer are sad.  Some very little and inconsequential things have meant a lot to me.  


I'm not sure if I am someone who believes things happen randomly or for a reason.  Probably both.  Is there some grand lesson for me in all of this?  Does it mean I really needed a life-altering event, or is it as random as a genetic mutation that can activate an oncogene?   Is there some fundamental change I should make in my life?  I sincerely don't know the answer to that.  I'm keeping my eyes and my mind open for one, though.

Drugs 1: Adriamycin (doxorubicin)

To date, I haven't really looked much at all at any of my medications.  I didn't really want to.  I realize this may be odd for a pharmacist, but I've always been like that for my own treatment.  Now, as the routine goes on and side effects accumulate, I have decided I probably will do some amount of reading.  I've decided to do my own little monographs here of what I think is interesting about these drugs.  Today, I've decided to explore the A (for Adriamycin) in my ABVD regimen.   Adriamycin is the brand name for the generic drug doxorubicin.  I'll use both terms interchangeably.

Drugs 1: Adriamycin (doxorubicin)

This one is the so called "Red-Devil." It literally looks like red Kool-aid in a syringe. Two very large syringes in my case. It needs to be pushed slowly, or the nausea is supposedly worse. Another reason to push it slowly is because it is a vesicant. This one is interesting to watch flow through the lines and into your veins. The correct rate per one oncology nurse appeared to be a thin ribbon of red through the normal saline drip which runs concurrently.

My dose is 56mg IV push each time. Assuming I get 6 cycles, that puts my total dose at 672mg. I don't know my "official" BSA, but per my math, at 6'5" and 205lbs, I am 2.26m2. That means I'll get about 297mg/m2, total.

According to the package insert:

"The probability of developing impaired myocardial function based on a combined index of signs, symptoms and decline in left ventricular ejection fraction (LVEF) is estimated to be 1 to 2% at a total cumulative dose of 300 mg/m2 of doxorubicin, 3 to 5% at a dose of 400 mg/m2, 5 to 8% at 450 mg/m2 and 6 to 20% at 500 mg/m2.  The risk of developing CHF increases rapidly with increasing total cumulative doses of doxorubicin in excess of 400 mg/m2."

In other words, my chance for heart failure is about 1-2%.  

It is difficult to tease out the precise percentages to side effects of doxorubicin by itself.  Chemo is usually given in combination.  The same package insert lists side effects of AC (Adriamycin and Cyclophosphamide) in breast cancer as a neat table, but I'm not getting cyclophosphamide.  It is safe to say, however, that doxorubicin can commonly cause complete hair loss, rash, photosensitivity, nausea, vomiting, mucositis, fever, chills, infertility, peripheral neurotoxicity, leukopenia/neutropenia, and malaise.  It has also been implicated in secondary leukemias.

How does it work?   Per the same package insert:

"The cytotoxic effect of doxorubicin on malignant cells and its toxic effects on various organs are thought to be related to nucleotide base intercalation and cell membrane lipid binding activities of doxorubicin.  Intercalation inhibits nucleotide replication and action of DNA and RNA polymerases.  The interaction of doxorubicin with topoisomerase II to form DNA-cleavable complexes appears to be an important mechanism of doxorubicin cytocidal activity.   

Cells treated with doxorubicin have been shown to manifest the characteristic morphologic changes associated with apoptosis or programmed cell death.  Doxorubicin-induced apoptosis may be an integral component of the cellular mechanism of action relating to therapeutic effects, toxicities, or both."

In other words,  the drug inserts itself into the genetic material of the cell and precludes cell division.  
This picture stolen from wikipedia shows how that might look.

Doxorubicin distributes very rapidly, and has a huge volume of distribution.  What this means in practical terms is that it very quickly finds itself in the tissues and not the bloodstream.  Comparing the package insert to other drug databases, it seems doxorubicin has extremely variable elimination (possibly multicompartmental), with a terminal half-life of anywhere from 20-54 hours.  This means it isn't even 97% "gone" until more than 11 days, potentially.   It is a substrate of 2D6 and 3A4 and a weak inhibitor of 2B6, 2D6, and 3A4.   It is also likely a substrate and inhibitor of p-glycoprotein.  (These are enzymes in the liver which metabolize drugs, and can be used to predict interactions.  PGP is found a few other places).


What else can doxorubicin be used for?   FDA approvals include: 

"Doxorubicin has been used successfully to produce regression in disseminated neoplastic conditions such as acute lymphoblastic leukemia, acute myeloblastic leukemia, Wilms’ tumor, neuroblastoma, soft tissue and bone sarcomas, breast carcinoma, ovarian carcinoma, transitional cell bladder carcinoma, thyroid carcinoma, gastric carcinoma, Hodgkin’s disease, malignant lymphoma and bronchogenic carcinoma in which the small cell histologic type is the most responsive compared to other cell types.  

Doxorubicin is also indicated for use as a component of adjuvant therapy in women with evidence of axillary lymph node involvement following resection of primary breast cancer." 

What else to say about doxorubicin?   Wikipedia has a nice history.  If I haven't cited it enough times, the Pfizer package insert for Adriamycin can be found here.  Chemocare also has a great website. 

In search of shirts...

Today I bought some shirts.   Why might this be interesting to you, the reader?   These shirts were necessary, I believe, due to cancer.


How does this story start?   Like many of the others, in the months before diagnosis.   At some point last fall (almost last summer), I decided to have two moles removed, one on my abdomen, and the other on my shoulder blade.   Who wants a big meatball on their upper back?  Well, after 32 years, I decided not me.   


So, I went to derm and had them removed.  They were bandaged with tegaderm dressings.  Each day, Sarah had to remove and redress these "wounds."   Well, after several days, the dressing site was worse than the wound.  Her removing the dressing was unbelievably painful, to the point it literally brought me to my knees.   Finally, one day my skin started bleeding right through the dressing site (note, NOT from the wound), in many tiny, tiny holes of blood.  It soaked through my undershirt!


So, I called dermatology to ask what was going on, and they wanted to see me immediately.  This was diagnosed as an adhesive allergy.  I was told to thereafter use "Paper tape" or the 3m micropore stuff.  I got plenty of use out of it, because soon after, I was having many, many blood draws trying to find what ultimately is my Hodgkin's diagnosis.


At the time, however, I found it to be really odd.   How did I develop a "tape allergy" suddenly?  This after years and years of using tape right on skin.   


Then, right as I was being diagnosed, I developed a weird sensation on my left shoulder.  It felt like I hit it on an edge or something, but the pain wasn't deep - it was on the skin.  To me the skin "felt" a little dry or fuzzy, but Sarah noticed nothing.  The pain was pretty noticeable to me, though.  I'd be aware of it nearly all day.


Now I think it may be one of the cutaneous manifestations of Hodgkin's Disease.  As you can see from the article abstract, there are several types of skin problems that occur with HD, but none of them describe my problems precisely.  (There are other articles out there I may someday seek out that describe other problems.  I was too lazy tonight after 25 minutes of trying).   In any case, my skin just feels hypersensitive to everything.   It has always been extremely dry, but I wouldn't call that pruritis or itching.   Seams from shirts are like sandpaper, but far worse now.  I've worn t-shirts inside out, on and off, for years.  


Which brings me to today.   The shirts I was looking for are the UnderArmour plain t-shirts.  The beauty of these is the location of the sleeve seam, and the fact that the seam is "sewn down."  I've had a few of these for awhile, mostly grey, and I've been wearing them under my dress clothes at work.  Actually, I've been wearing them nearly non-stop, under even regular cotton t-shirts, long sleeve t-shirts, or my standby hoodies.  It is SO much more comfortable for my lame skin right now than the classic Hanes cotton Ts. The UA tactical fitted shirts aren't quite as nice for me.   Aside from the fact that you have to have the body of a ripped swimmer to look decent in them, the seams are traditional and not sewn down.  That said, inside out, these are much nicer than cotton as well.  So, today I bought a bunch more of these loose tech t-shirts (mostly white) and am now stocked up.    Another plus, the more you wash them, the softer they get, which is the opposite of many t-shirts.

Yep, just another of many little incidentals that goes along with my new cancerous life.   My goal on this blog is not to plug favorite companies, but I'll be honest, this is another incidental I am very thankful for.  Enjoy!

Settling into a routine?

Short update today:


I worked again, Wednesday through Friday.  This week was very much a repeat of the chemotherapy week.  I would say that this Tuesday went better than last Tuesday, but Wed-Fri was much the same.


By Wednesday, I was quite tired at work.
By Thursday, the mouth "burning" sensation was back.
By Friday, I was slightly less tired and more hungry.


Interestingly, I felt better by Tuesday afternoon than I did by Thursday.  


If this is the routine I will have, I can get quite used to it.  I am hoping that things stay similar in terms of how Chemo week goes.  If so, by tomorrow I should be back to my "normal" self.    It is amazing how tired I am by the evenings, yet, I don't sleep well.   Today was also interesting since I had a higher-than-usual amount of odd chest sensations.  I'm hopeful that what I'm feeling is the medication working!


I did get on the trainer twice this week for some light pedaling.  Hopefully I can do that twice this weekend, but we'll see.   That is all for now.

"Welcome to club bald. I believe you're in good company around here."

I got a very special haircut today, courtesy of Sarah and a brand new Wahl Home Haircutting Kit.   I was told that my hair would begin to fall out in about 2.5 or 3 weeks.  Today is just over 2 weeks.  Like many others, I decided to take a preemptive strike at the hair.  I really, really didn't want it to fall out in patchy clumps (it apparently usually does), and I didn't want to find it in my hands, shower, pillow, or hats.   


I had told some of my cycling buddies about this, expecting (and needing) little sympathy.  In fact, 3 of them already have this haircut and one told me: "Welcome to club bald.  I believe you're in good company here."  This was the best thing he could have said.   


Besides, I like a short haircut and I was about a week overdue anyway.  No sense in paying for a haircut only to shave it another week or so later.   It was bad enough buying the home haircutting kit.   On the other hand, maybe I'll use it again some day.  Maybe I'll decide bald is for me.  It works for Donald Driver, Michael Jordan, Prince Fielder, G. Gordon Liddy, James Carville, Sean Connery, Homer Simpson, and of course, who can forget Vincent Price (a.k.a. "Egghead").


Before I get to the bald pictures, I should share the gift that Ann and Brandon brought over for me when we had dinner on Saturday night.   The first time I saw the movie Napoleon Dynamite was with them a few years back.  I think the four of us laughed nearly the entire movie.  Here is Napoleon's best friend, Pedro:

Here is Josh playing the part of Pedro Sanchez, earlier today.

I guess I didn't get the stare quite right, but it was the best I could do.    Technically, this little outfit would be dress code compliant at work, although I will not be trying it.  Anyway, here is newly bald Josh.

I definitely don't have this guy's smile,

or this guy's style,

but I think I pull it off better than Britney Spears.  If only I could catch touchdown passes in the NFL or win the TdF.


It isn't too bad at all.  Since I'm not quite "cue ball" yet, my hair is sort of like velcro in a beanie.  My ballcaps also fit just a little bit more loosely as well, although the same velcro sensation keeps them right in place.   Just another day in the life of my cancerous adventure.  Far, far from the worst one, that's for sure.

Chemotherapy 2 of 12 (or finished cycle 1 of 6)

The plan for my first chemotherapy was to be as tired as possible, hoping I'd be too tired to notice what was going on.  I was tired, but I knew what was going on.


The plan this time was a good night sleep.  Even with the oncologist recommended Ativan, that didn't really happen.   I had no anxiety about things, I simply couldn't sleep.   I was pretty sure I wouldn't have anticipatory nausea and vomiting, because by middle of last week, I'd forgotten what the nausea was like.


Due to appointment scheduling, I was there at 7am for labs.  I had a donut before we left the house (two, actually), and we quickly stopped for pancakes between lab and oncology.  "Substantial but not greasy" is what they recommend prior to chemo.


I was shocked my WBC was now 2.x.  Prior to the first chemo, my WBC was 16.5.  I had seriously underestimated the knockdown power of this regimen.  I didn't know what to expect, but I figured anything past the WBC dropping in half would be pretty good for the first time.  (Wow!)


After my complaints of pain due to the dacarbazine, they went from a 250cc bag to a 1 liter bag.  Additionally, they started the IV 6" up my forearm.   No pain at all.   My nurse did infuse the doxorubicin faster than my last nurse (which can cause nausea), but I haven't noticed anything unusual just yet.   Well, this is all still unusual to me, but I noticed nothing that I hadn't noticed last week.   Chemotherapy was basically uneventful.


On the way home, I was somewhat hungry.  Sarah wanted Taco Bell.  One piece of advice they have is to not eat your favorite foods around chemotherapy, or, they will no longer be your favorite foods.   Sarah LOVES Taco Bell.  I dislike it, so, I felt safe eating there.  Now, believe me when I say I know how bad this sounds.  Taco Bell + chemo = bad things.  That said, they have a new menu which is supposedly healthier - less grease, no cheese, no sauces.   I'm actually doing OK, with similar or possibly less nausea than last time.    (And, since I don't really care for Taco Bell, I won't lose it as a favorite).


I couldn't sleep, however.  I was really hoping for a nap.  I was falling asleep watching TV, but in bed, I simply couldn't sleep, and got more nauseated.   So, I sat up and did next to nothing.  Later, Sarah made me a smoothie and we watched Dexter.   (BTW, for those who didn't know, Michael C. Hall who plays "Dexter" is recently in remission for Hodgkin's Lymphoma himself).


Two down, 10 to go.