Just a little venting to end the day with

One of the most frustrating aspects of this disease is the fact that few people have ever heard of it and, consequently, do not understand the symptoms and how they affect those afflicted. No, its not an excuse, it is simply the way it is. There are times even now, as I go through treatment to manage it, that I feel fatigue. I do not mean I feel tired. I mean I feel fatigued, full body, fucked-up-beyond-all-recognition fatigue. Combine this with pain in almost every single joint, especially my knees, wrists, and feet and we have the ingredients for a real party.

 

I hate it because it affects how I react to everyone, especially my kids. Kids can be, we all know, rather challenging at times. This goes double for those in the 4 to 6-year old range, which is what we have. My patience level is literally in the negative numbers when I am having symptoms. If my wife even looks at me cross-eyed, it could result in something so viciously evil coming out of my mouth as to crucify a normal person where they stand. I do not tolerate fools on a good day, but combine that with an attack (which is really only the best way to describe it), and I just might send your forsaken soul to the lowest depths of Hell with a mere look.

 

Believe me...I do not enjoy this. It just happens. And attacks are different for everyone with hemochro (which I am calling it as it sounds cooler than it actually is...). This week was rough for me. Although I did have some enjoyment this past Saturday evening and, of course, on Super Bowl Sunday, Monday was like a train slamming into me. I can't do much else but try to apologize, but kids don't get it. They just know you were an asshole. Hopefully, my wife knows this is not really me; its the hemochro talking. Bloodletting treatments have been helping, but I am also frustrated because it seems like I am reaching some sort of plateau with little progress being made. I have had to accept that until my ferritin levels are down to the goal of 50ng/mL, I simply cannot have any beef. None. Nada. This has been a hard pill to swallow as I have been a lifelong, committed carnivore, mocking those who eschew all things red meat. Ah, how The Universe and The Fates enjoy their little ironies, don't they?

 

When the RN handling today's bloodletting asked me if I wanted to let my blood continue flowing or if I thought I had given enough, I said, "No, let's fill that bag to bursting.". Each week is like a test for me, to see how much I can bring my levels down. The last couple of weeks have not shown much progress. It is literally like one step forward/two steps back. And it is incredibly frustrating.

 

I know, I am whining and there are so many others with so much more going on. I have a dear friend dealing with having had at least one, perhaps multiple, small strokes...and she is slightly younger than myself. I have seen friends from school who post about rheumatoid arthritis, fibromyalgia, and a multitude of other ailments and injuries. I am not asking for anyone's pity or to try and say I am any more important than they. I am reminded of how lucky I am and how I should not complain each and every week when I sit next to and talk to those undergoing various levels of chemotherapy. I know cancer survivors and have known those who have fought and lost. I do not consider myself equal to them in what I am going through.

 

But sometimes, one has to vent. So thanks for listening.

...with no one to blame but myself...

This past week, I turned 48. I can recall being about 13, contemplating how old I would be in 2000 and thinking, "Damn...that's old...". Now I think, "Damn, 33 is like a baby...". I have always loved my birthdays. I celebrate each one with gusto, dictating what people should get me if they choose to get me presents and making certain everything is all about me. Why should I compromise on that? It was in that spirit that I decided, "I am going to have a great, big, bloody steak for dinner when we go out to celebrate." And that is exactly what I flippin' did, telling our server that I wanted it, "...as rare as you can legally get it." And you know what? It was everything I had hoped it would be...

 

The week of my birthday was sprinkled with little dietary rebellions of this nature. Some chicken livers and heart while making a whole chicken for dinner on Tuesday, a beer (yes, only one) with sushi lunch on Thursday, Taco Bell for lunch on Friday, a wonderful steak dinner with family on Saturday. I justified it all with the thought, "I just had a phlebotomy treatment ahead of all of these minor transgressions and hey, it's my birthday, dammit...". Plus, I had just logged my most significant drop in ferritin levels the week previous. Everything should be ok, right? I might see some variation, but it shouldn't be that much of a change, right?

 

Ah. Well...the gods laugh when a mortal thinks they have control over anything, don't they?

 

Those singular incidents, those minor transgressions served to pump my ferritin levels so much that the numbers effectively wiped out the drops from the past two treatments. Yep. The past two treatments.

 

Observe:

12/26/14 - 1016ng/mL

01/02/15 - 795ng/mL

01/15/15 - 1097ng/mL

 

This has been telling. I was curious how quickly my body loads iron. All I have seen up to this point were the drops and felt great about my dietary approach in combination with the treatments, that everything was progressing the way it should be. But there it is; the numbers do not lie. And I can't blame anything other than myself for it.

 

Do I feel guilty? Honestly, not really. I had known that enjoying my birthday on the level I wanted to would affect my numbers. I was prepared for that. So this is really not a shock on any level. But it also gives me an idea of how quickly and by what degree my body loads iron.

 

Now I just have to wait for that note from my doctor asking what the hell happened...

Bedside manners...

Going on record to say that I much prefer a woman handling my treatments than a guy. It isn't so much that I am sexist...it just seems that female RNs seem to lean toward having a better ability to make everything more comfortable.

 

Lets take my last two treatments as examples. The RN who has handled my treatments the last couple of times knows that she needs a smaller gauge needle for my veins, that my veins are not at all fond of being poked and require some inducement via wrapping my arm in a heating blanket in order to come to the surface, and her technique used inserting the needle and setting up the accoutrements is gentle and efficient.

 

By contrast, the male RN I had this last treatment sort of gave me crap for always using the same arm (its the best vein, dude), literally jabbed the needle into my arm, and then passive/aggressively complained that should I be assigned someone else my next visit, to make certain they make multiple appointments in the future as they tend to forget and I might not get the time I want (have not actually had a problem with that yet, but ok...).

 

My reactions at the time? What do YOU think? The guy was sticking me with a needle and taking my blood. Would you give him any shit? Exactly.

Ferritin Fun

As mentioned previously, the standard treatment for hemochromatosis is phlebotomy, i.e., bloodletting. To give you a better idea as to how effective it can be, I would like to share the progression of degrees by which my ferritin levels have decreased. As a reminder, ferritin is used as a marker for iron overload disorders. The normal/standard range is between 22ng/mL and 365ng/mL. At the beginning of this little adventure, you may recall that my levels were at 1295ng/mL; extremely high, to say the least. Here are all of my levels to date:

 

10/16/14 - 1295ng/mL

12/04/14 - 1233ng/mL

12/17/14 - 1124ng/mL (after 1st treatment)

12/26/14 - 1016ng/mL (after 2nd treatment)

01/02/15 - 795ng/mL (after 3rd treatment)

 

After only three treatments to date, my ferritin levels have dropped 500ng/mL, with the highest drop occurring after the most recent appointment (221ng/mL!). Not too bad. Not too bad at all. At this rate I think it is conceivable to only have perhaps seven or eight more weekly treatments before achieving the goal of 50ng/mL. Then, I assume, we examine how quickly my body "loads" and adjust the actual frequency of my treatments.

 

Pretty good news to start 2015 with!

Just a big ol' bag o' blood...

Today was my 2nd phlebotomy treatment. Good news: no nausea this time. Bad news: my veins apparently really hate being poked and deliberately retreat when the needle comes after 'em.

 

After getting settled, my nurse (a different one from last time) got all the tools of her trade together and started to examine my arms. She was incredulous at how my veins did not pop out. "For such a big guy, your veins do not easily show up!" Right. Isn't that the way its supposed to be? Anyway, in addition to having veins that seemingly like to play hide and seek, they also are apparently quite small compared to others. After finally finding my vein, my nurse opted to use a smaller gauge needle, fearing the standard size that comes with the phlebotomy kit was too large (thank you!). Tied off, cleaned spot, stuck in needle. Nothing. Pull needle out a little, move around a little. Nothing. Repeat. Nothing. After trying for a few minutes, the decision was made to wrap my arm in a warm blanket to coerce the frightened little bastard closer to the surface.

 

45 minutes later...

 

Tied off, cleaned spot, insert needle into a new spot, slightly higher than the first attempt. Nothing. Pull needle out, move it around a little. Nothing. Pull needle out, move it around a little. Oh, look at that, blood. Push needle in deeper (yes, deeper) and line up, attach secondary tubing for draining, tape lines to hairy arms (this will be fun later). Squeeze ball - ironically shaped like a small heart - periodically to keep the flow moving. Chill out and read another couple of chapters of Anne Rice's latest addition to The Vampire Chronicles, Prince Lestat (which is quite good and a book I highly recommend). Post sarcastically humorous FaceBook status asking if it is weird I am reading Prince Lestat  while being drained of blood. Take picture of my arm all tubed and taped just to mess with my wife (and anyone else who might be queasy at the thought of blood and having it drained). Sip on an ice-cold Coke at the insistence of my nurse. Hang out and watch my blood drain into a plastic bag for the next 30 to 40 minutes. 

 

All in all, a better experience than the last. And this time I filled that puppy to the brim (see above, left; that is my actual bag o' blood...). Next treatment is scheduled but Christmas came early in the fact that, due to the holiday, I do not have to go back until the 29th. Yay! I am curious, though, to find out how much lower my ferritin levels will get to after this 2nd treatment. Woo hoo!

Progress

Did a regular series of blood labs yesterday, just to find out where all my levels are at after my first phlebotomy treatment. My hematologist had noted that the first noticeable change in my ferritin levels could have been something of a fluke (between October and early December, my levels dropped from 1295ng/mL to 1233ng/mL, a change of 62ng/mL without phlebotomy and only really just starting to make changes to my diet after my initial diagnosis), so she wanted to get some new baselines. I am assuming I will have to do this each week prior to each treatment occurrence, in order to track progress.

 

This morning I signed onto my laptop and saw that a new test result was available. My ferritin levels had dropped again, this time from 1233ng/mL to 1124ng/mL, a drop of 109ng/mL! I do not think these particular results are a fluke. The standard drop, after phlebotomy, is usually 70ng/mL. Moderation in diet, changing what and how I eat, plus phlebotomy has already started to provide positive changes.

 

Have my second treatment later this morning and, as much as I hate being poked as often as I have and will continue to be, I am stoked to see such a significant drop occur and am hopeful to see more dropping in the levels. Almost makes having been suffering through a cold-from-Hell for about a month now - that has also contributed to ear pressure on such a level that I have now had to do two course of Prednisone (an oral steroid) to clear them - sort of worth it. Or not. Trying to find the silver lining there and it is sort of difficult...

 

Now to eat a filling breakfast and drink lots of tea & water in preparation for today's bloodletting...so I don't pass out or otherwise feel sick like a big wuss as people are getting their chemotherapy all around me...

1st Phlebotomy

Its not like I was actually looking forward to it or anything, but yesterday's phlebotomy treatment could have, well, gone better.

 

Let me start by saying I know how lucky I am. There are others going through a hell of a lot worse than I am, so I really do not have much place complaining. I am mainly relating this from a more humorous level if anything.

 

The day started with a sense of foreboding, coming as it did in conjunction with "Stormpocalypse 2014". Amy ditched out on joining me (to be fair, she was dealing with a nasty cold/cough and neither of us felt it was a great idea to have her in the presence of people with already compromised immune systems, getting their chemotherapy, etc.). So I drove myself from Tracy to Modesto. Wind and rain dissipated a bit as a neared my destination, which was good (I hate driving in inclement weather...). Checked in and took a seat with my Kindle, waiting my turn. I have to say that it was a sobering 1st view, if only because I had never experienced it previously, seeing where those getting their meds, etc., basically all hang together. My boss - herself a cancer survivor - had given me details, but nothing really prepares you. Any anxiousness or fear I may have felt at this stage was actually dispelled knowing these people were so much braver, so much stronger, and dealing with so much more than I am.

 

For my condition, the treatment is currently scheduled to be weekly blood draws, about a unit each time. Several days in advance of each draw, I have to also give blood for lab work to track/monitor my ferritin (and other) levels. Good thing I am pretty ok with needles, right?

 

Assigned a seat, get comfortable, warm blanket wrapped around my arm to get things flowing. Clean the spot, insert needle. Pretty much ok at this point. Tube inserted, bag set-up, blood flowing, however slowly, as I pump the ball she gives me to squeeze to keep the blood itself pumping. Wave of nausea hits me so hard I actually break out in a total body sweat. Not even during deep-sea fishing trips have I experienced this type of nausea. I think, "Great. I have this damn tube in my arm, blood is leaving my body, and I have to ralph. This is not gonna be pretty by any degree..." I sit back, close my eyes, focus on the cool air coming down from the overhead vent and the wave begins to dissipate. Now, keep in mind that I am not generally a squeamish person when it comes to blood; it has never really bothered me. Maybe it comes from hunting and fishing in my youth, maybe I am just a sick bastard, but the sight of it - whether it is someone else's or my own - doesn't affect me as it might others. The only thing I can imagine is that I simply did not eat or drink enough before arriving. I thought I had, but I obviously didn't. Check that off on good things to note for next time.

 

And this is where, I fully admit, to feeling some shame, remembering where I am, what others around me have been and are going through. There is an older gentleman in my little "area", the 2nd chair, lounged out, watching TV, obviously getting fluids, chemo, something...but definitely going through far more than I am. I saw a woman who did not appear to be much older than myself, getting her chemo, as well as a number of other women, older, doing the same, knowing their routine, knowing the nurses, fairly casual, fairly relaxed. I do not feel pity for them; I feel admiration. And I also feel like a wuss. I am only having a unit of blood removed per week, for now. Suck it up, buttercup.

 

I relax and drink my apple juice. At some point, my nurse comes over and comments how the blood has stopped moving. Not slowed, but stopped. I look at the mainline and, sure enough, despite my still squeezing that little ball, no blood. With that, my nurse starts to move the needle around in my arm. What the fuck did I ever do to you? Let me tell ya something, Nurse Mengele, that does not feel too good. Needle is definitely in the vein, so let's swap out the mainline. Nope, still not going. Looks like the vein collapsed. As it turns out, I was able to fill 90% of the bag; they can either a) poke me again to see if we can get more or b) I can come back next week. Yeah...next week is good.

 

Wrapped up, scheduled next treatment...and walked out into a deluge of Biblical proportions outside. Drive back to Tracy basically underwater. That was fun.

 

Overall, not really too bad. Just something that will take some getting used to as it is going to be the norm for the next few years, at least. Again, I honestly cannot and shouldn't complain. Its all manageable.