Friday, February 26, 2010

Bald spot

Where everyone else has a bald spot I have a hairy spot. How ironic is that?!?


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Let me describe my feet

As I sit looking out at the wonder of The City after The Snurricane (snowicane, snowmageddon iii), I thought it the perfect opportunity to describe my feet and the pain I'm experiencing. It has nothing to do with the fact that my feet woke me up at 0503 in the morning and I couldn't get back to sleep - honest - it was a burning desire to lay down on paper (electronic paper, well sort of) the experience and adventure that is my foot pain. Now that I've got everyone pepped up for a good read...!

I don't know if this is immediately resultant of the Cytoxan. Refer back to this post for details on Cytoxan. If you look closely at the card, neuropathy is not one of the side effects listed (and thank god I didn't look closely at the card - losing your nails!?!) Now Velcade, the last dose of which was on 12 Jan, is in fact known for causing neuropathy and if it occurs you actually dial back your dosage to help stem the effect. So the Docs are a bit stuffed at this one, there are other causes (related to Myeloma patients) but I've got none of the symptoms associated with those causes - we're testing for them next week anyways. But back to my feet.

There are a variety of pains I experience. First - the dull ache in the heels. If you wear a bad pair of shoes you may have experienced this but I liken it to jumping off a small ledge, 3-4 feet and landing, bare-foot, on your heels. The resulting bruised heel would ache on a regular basis. I can't say that it's constant but, like I'm in near-complete remission, it's in near-complete awareness. Next, there is the ball of the feet, towards the front of the ball of the feet. this is an ache but mixed with a burning sensation although not hot to the touch. Again, this part is in near-complete awareness. Next, I have a variety of sensory effects that can be described but the description wanes in contrast to the physical experience. Everyone tells me, "you have to go on a cruise - until you've done it you just can't understand." I have no desire to take a cruise, perhaps I'm missing something. I have no desire to experience the sh!t that's going on with my feet but I didn't have a choice in that matter and am not recommending you give it a try! :)

To set the stage, as I said, there are a variety of sensory inputs. Where possible, I'll give you the opportunity to associate. Take a 9v battery and, gently mind you, tap the +/- ends to your tongue. That quick zap, very directional, of pain occurs in my toes. I can't say it's near-complete but it is a regularly occurring effect. Next, when you twinge a muscle and experience that sharp, inner pain that starts in a location and then seems to linger down a path, reducing in its power, that occurs in various parts of my feet. This isn't the constant muscle ache of a pulled muscle, this is picking up the kid in the wrong manner and that sharp, swift, twinge is the pain I'm talking about. I will be in a meeting and will physically jerk as something like that occurs, usually around the front of my heel, leading into the instep. This morning, waking up, the pain across my instep was electrical in nature but more of an irregular, pulsing flow that would approach the threshold of truly hurting but never quite cross, causing a dull but annoying pain. I can only liken, and again, not comlpetely, to having a muscle, taught across the instep, that is stretched too far and then released back to normal and then stretched again. It's not quite that as stretching the instep doesn't help. Then there's the irregular occurrences, one of which was this morning where I would move in a manner that is similar to the achilles heel stretch (find a fitness site to explain if this thought isn't familiar to all you slackers! :) and I would experience a sharp, shooting pain from the top (ankle) of the heel up the ankle into the back of the calf. Lastly, there's the overall burning sensation along with a dryness which feels like my feet are cracking. With the Olbas Oil and Cocoa Butter it hasn't been as dry but last night I didn't put on either of these which may be the reason I was up at 0503.

I think I've highlighted the bulk of what's going on in the feet. Beyond that I've also experienced a "mushiness" in the calves, like I'm really out of shape and just went and played touch football in Central Park - wait, that was 15 years ago when I really was out of shape. See how you can tie back these experiences if you really try!?! I'm not sure if the pains in my calves and the additional pains in my knees have been caused by my walking differently due to the issues in my feet. I don't notice the knee pains at all unless I have been walking alot, and usually in dress shoes. Aside from Monday, I've been wearing my aptly described 'man-clogs' every day. Today, with the Snurricane, I'll need to wear my Doc Martens and will hope for the best (they've not been the best thus far.)

For now, I hope you've enjoyed my little masochistic treatise on feet - now I must shower and prepare for work!

Wednesday, February 24, 2010

Oh...I didn't recognize you...

Before - After
Hair - Bald
For most people, work friends, rugby friends (anyone that hasn't seen pix on Fbook) I can understand the look of surprise if you see me outside of normal circumstances. Most work friends see me at my desk and then ask, "did you lose a bet?" To which I respond, jokingly, "sort of, I guess." and then explain. There are some that come up and talk to you till you actually say something about what's going on. And there are those that outright just ask, "is everything all right?" The latter I probably prefer as it's straight and to the point.

But what caught me the most off guard was the people at SVCCC. When dealing with cancer patients all the time, the change from hair to no-hair I would imagine is quite often. So when someone shows up bald the, "you look different" comment catches me off guard - well of course I look different - you gave me drugs that made my hair fall out! :)

This post was written Monday so the novelty has worn off - well at least for those that haven't asked me to launch my video chat for the entire trading desk to see! All is good except for my feet - my feet are still killing me! I've increased the dosage of the Lyrica and it's not doing anything but making me stoned. Apparently, if this doesn't go away in a few days then I'm to get in touch w/ one of the nurses about a trial of one of their opioid pain medications. Let's break down the word opioid - opiate - opium?!? Sounds like fun!

Dilyn's going to take a picture of me with hair which I'll try and post!

bfn

Tuesday, February 23, 2010

The glare, the glare!

Today was a day to test the video on my chat. Trading desks everywhere asking me to wave and show off my bald pate! And that fluorescent fixture above my desk offers a wonderful glare on the chrome dome - perfect for entertaining....

Later I went to St Vincent's - and apparently I captured 16.9mm t-cells, about 1mm more than I originally thought! I can't say that's a record but I'm damned impressed with myself. I also found out that the various tests they ran (for bacterium) when I was sick all came back negative except the Sputum - the medical term for loogie! Apparently I had the H-flu bacterium. There is a big name I don't remember and no, it is not related to H1N1, it's essentially the same bacteria that causes a cold. My numbers were good - WBC still a bit low but should be coming up, RBC and similar all the same. Nothing of significance there.

I'll go back next week for another round of bloodwork to determine if I can go on the Rev/Dex regimen. I expect that will start in about two weeks. In addition to that, due to the neuropathy I've been experiencing, and due to the fact that I've had three incidences, in the last six months, where I've required anti biotics, we'll do a few more things while I'm there. I'm scheduled to get a few injections. Currently, I have IGA myeloma. Since the IGA protein has taken over my body, it depleted my abilities to create the IGG protein (antibody) which helps your body protect against infections like the sinus infection and the cough I more recently experienced. Rather than do an IGG transfusion (as my IGG numbers are coming up), and to protect against further issues, these shots will help protect me like a flu virus. In addition to the injections, there will be one or two other tests to help rule out other causes for the neuropathy. The doc definitely doesn't believe this to be otherwise caused (i.e., an issue for a podiatrist) as this is occurring in both feet/legs, not in one. These tests will help rule out any other issues (of which I have no other symptoms.) As usual, I have thrown everyone for a loop as what's occurring with me should have happened with the Velcade, not the Cytoxan.

Regarding hair loss, if I had gone through a transplant (not a harvest) then my expectations for the return of my lovely locks would be about three months. Since I didn't have the level of chemo required in a transplant, I can hope this return will be far quicker. But I'll set the countdown clock at three months!

Regarding the neuropathy - he's telling me I can increase the dosage of Lyrica (I guess it's pronounced Ly-REE-ka) up to a point and see if that helps. So I'll try taking two in the morning, one in the afternoon and one at night. If that doesn't work he said I can start getting a more narcotic solution, such as morphine (yes Janie, I can get a script for Morphine!) I ruled that out saying I'll fight through the pain - I draw the line at medical marijuana.

Lastly, the doc (Chari) is going to turn me over to Dr Jagannath (head of the group) as he (Dr J) has a closer relationship with Dr Richardson (DFCI). This could be prompted by the request of Dr R for a monthly Zometa regimen over two years. Dr Chari thought that somewhat aggressive but understood this is what Dr Richardson was asking for. Bottom line, I'm happy with Dr J driving things here locally.

I think I covered everything - except that I finally found two hats - one winter one, and one more like a runners cap, that I'll probably never wear as it looks more like a dew rag. I never realized how hard it was to find a nice hat! On that note, I hear the Olbas Oil, Cocoa Butter and LyREEca calling!

Monday, February 22, 2010

Just a Quick Post

Nothing much to add - my feet are still killing me and nothing seems to work. I am a fan of Olbas Oil though - sort of like the old 'liniment' that they used to have at football practice. I head to SVCCC tomorrow and hopefully we'll be able to do something about the neuropathy and get this over with - finally! I did get my IGA/Lambda numbers back and they look good - still in the normal range. The doc at DFCI said, "they look superb".

So now I'm heading to the bathroom to cover myself in smelly oils and then on to bed!

Saturday, February 20, 2010

ok, so a bit TMI

Hair loss on the head has been discussed. Today I took a shower and shampooed and conditioned my head. Why, you ask? I'm not sure if I can tell you why but it seemed better than soap. Well afterwards, I was putting a little cocoa butter on the head (it's dry here and my head was flaking!) when I noticed my hands were covered with little pieces of hair. What's left is continuing to come out. Not sure if I have the wherewithal to break out the razor.

How does all this work? Well, as I've been told, it takes a bit over two weeks for the hair cells that have been killed to release the hair. And that began on Monday. Now what's funny is I've been able to keep my side burns while the top of my head continues to shed it's little weight of stubby hair. My eyebrows are fine. My chest hair, what little I have, is all there. But Wednesday, when in Boston, I noticed in the shower that my armpits have started to thin. In addition to that, I'm losing hair down below. I expected to be bald on the head, but elsewhere...? I realize all of this is really a bit TMI but hell, it's my blog - I can say what I want!

Friday, February 19, 2010

After Much Delay...Fun With Chemo!

I apologize for the delay but I headed (pardon the pun!) back to work Thursday so I've been a wreck! My son told me Thursday, "are you excited to go back to work and show everyone your bald head?" I want to be six again!

The short story - I'm in either near or complete remission (this is where everyone stands up, raises their beer and says cheers! Please do so now.) From a regular blood test you wouldn't be able to tell that I have Multiple Myeloma. If you do a bit further research, you'd see that there is a trace of the disease but only a trace. So to keep that trace I will most likely go onto a regimen of Revlimid (21 days on, 7 days off) in the near future. And I will maintain that regimen until the numbers start to change. Should there be a change, I'll go back on the original chemo routine (RVD) for four cycles and then back onto the maintenance program. The additional good news is my genetic profile (cytogenetics) is such that the potential exists I may not have to do a transplant. That is really good news (again, raise the beer please!)

The bad news is my feet are killing me! Firstly, the Cytoxan was given to me with a card (you saw the picture in a previous post) warning me of everything that could happen. I was then told that the full effect would occur in approximately 8 days. I was not warned that in a fortnight, the alopecia they warned me about, would then kick in. Once I enquired of other chemo patients they all told me it takes about two weeks. Why couldn't someone have warned me?!? I had thought I was safe from the clippers! But the bald head, which everyone has clearly pointed out, "...looks good on you...", is something with which I can deal. The feet - that's another matter. But again, nobody seemed to clue in on the fact that what's happening with my feet is neuropathy (except my wife!) DFCI definitely believed it to be neuropathy and suggested a few things (detailed below). I can't say they're working well but I did sleep more Thursday night than in the last two weeks!

For now, I am in a good spot. If I can get rid of the neuropathy then I'll feel somewhat normal (chillier upstairs but normal all the same). I am also going to investigate creating another blog page off this one that simply outlines the various drugs I've taken and the reactions from each so that anyone else who has Multiple Myeloma has a simple resource guide! If you're in this for the short ride you can leave now - the rest is details on what the docs at DFCI told me at my visit.

First - the numbers - I've not gotten everything back yet (IGA and FLC) but the basics show everything else is pretty normal. Blood counts were low across the board but just below the normal ranking. Globulin, TotProtein, Calcium were all normal so everything looks good.

Second - the doc is recommending I go on Zometa, monthly, for the next two years. Where the docs at SVCCC were all saying the amount of zometa I was receiving was the same as most people would get in one year, DFCI had a different thought process. As a reminder, zometa is a bisphosphonate (everyone clear now?) and it's used as a bone strengthener that is usually associated with osteoporosis or other bone disorders (normally associated with older people). DFCI is saying it's not the amount of zometa that is stored in the bones (to strengthen and support) but the action of the zometa getting to the bones that is important. This step, the transport of the zometa to the bone, supposedly blocks the myeloma from getting to the bones, according to DFCI.

Third - post harvest strategy, as also mentioned by SVCCC, will be Rev maintenance program (as mentioned above). This will also include some Dex (steroid) but there's a concern if the dex goes beyond six months. If I remain in CR or near CR then we will maintain the Rev maintenance program.

Fourth - if there's an increase in my M-spike (i can't explain that one - bottom line, it identifies a protein spike specific to the iga, igg, igm lines.) or if I step out of CR then DFCI wants a consolidation of RVD for four cycles and then back to rev maintenance. DFCI's studies, for persons with the cytogenetic profile like mine, were all built around two rounds of RVD so this is right in line w/ the protocols they've already tested.

Fifth - for the neuropathy he provided a script for Lyrica. The wonderful thing about Lyrica is it could: make me high, make me sleepy, make me not sleepy (seriously, one page says sleepiness, the other says trouble sleeping), have suicidal thoughts (honest, it says that) and cause, and I quote, "new or worse irritability". So I may be come 'worse' of an irritable arse than I am right now! Additionally, he's recommended two items to assist with the neuropathy: Cocoa Butter and Olbas Oil. The Cocoa butter - real cocoa butter, has the same type of ingredients as real dark chocolate (the 80/90% cocoa chocolate) and the type of ingredients in the cocoa are beneficial to the nerve endings. I would warn, don't wear clogs - the cocoa butter, on your feet, makes for a slippery situation and your shoes will slip off! The Olbas Oil is a swiss made concoction of menthol, eucalyptus and camphor which is also designed to help. It's also a massage oil - perhaps I can convince my wife....wait - sorry, wrong blog! :)

So all is very good for now! I am still bald but at least the Lyrica is letting me sleep (not doing much in the daytime but will let me sleep at night). That's enough for now!

Tuesday, February 16, 2010

Cold and spiky!

You don't realize how cold it is outside until you've gone hairless! Wow - what a difference. And the same goes for ball caps. When you have a wonderfully done buzz like mine (please add the dripping sarcasm that I can't quite replicate in print) those spiky little leftovers will kill you! The ball cap just helps point out where these are located. I'm going to solicit my wife to try and clean up the missed spots in the back of my head as I really look more like "orange prison jumper" bald rather than clean "Lex Luthor" bald. I am not at the stage where I am ready to break out the razor on my scalp - I just foresee that as being one big, bloody, mess!

My feet are still killing me. Granted, we did spend the day at ChuckECheese in the Bronx and the Museum of Natural History but I don't believe my feet should be hurting as much as they do. My wife was kind enough to loan me her PediEgg to help scrape the inch of callous off the heel and ball of my foot. I rapidly applied lotion and felt like I gave myself quite a nice pedicure (sans any nail work.) I was a bit jealous as my wife had gotten a nice foot massage when she got her feet done. I'll have to go do the same.

We're off to Boston today to meet w/ the Docs at DFCI. This will be the first bloodwork I've received since prior the harvest. During the harvest my numbers all went askew as my blood counts were down (since we were taking it all out) and my WBC counts were high as the Neupogen was making them run rampant! Spending the evening with friends in Boston so it should be a nice trip as well. Back to work on Thursday, with a bald head. Shot a message ahead so that everyone can be forewarned.

Thanks all for your thoughts on FBook, here and via email.

Cheers!

Monday, February 15, 2010

I look like my brother!

Never before have I looked more like my brother. As fate would have it, I slept like sh!t last night and my head felt like straw, to the point of hurting as I lay on the pillow. All I wanted was a nice hot shower and to wash my hair so that it wouldn't be so dry. WELL THAT WASN'T A GOOD IDEA!

So I called in Lil and we had a quick, mid-game huddle, and decided that the story would be I did it for my friend Kieran who lost his hair. I broke out my clippers and did my own marine cut. And I have to say, I think I did a pretty good job. I've uploaded two pics w/ myself and the kids on my kodak site but can't seem to get these to publish and be viewable.

Today I'll also post pics, and my link, on Facebook as I've not done that before - so I guess this is sort of my coming out party for those that aren't already aware. If you're on Fbook you'll be able to see. Until then, I need to sort out how to do this best. Need to go now as the kids are getting crazy!

Sunday, February 14, 2010

Need an excuse?

The entire time that I've been going through all this my saving grace has not been the fact that I've not gotten sick or that it's made me miserable. It's been the sheer fact that I can get through all of this without having to explain to my son what's going on. To him it's life as usual.

This recent onslaught of hair loss gives me pause. The sheer (pardon the pause) reason is I don't want him to be worried or even try to understand what's going on. At some point we can talk about what's going on (hopefully at that point it's what went on) but for now I'd rather keep him blind to the entire mess. My daughter is still young enough it won't register but will only be a memory. My son is too old and will catch things if there's not some sensible reason (aka excuse).

So now the question is, "what's the excuse?" I heard from my friend Kieran that the length of time it took for the hair to fall out is not unreasonable as it's the dead hair cells that are finally coming to the top. Though I've not confirmed this with a doctor, K's comment makes sense. I also did a quick test and tried pulling a bit from the hair that's shorter on the side of my head and I was easily able to pull out a lock without difficulty. This tells me I think all of it's going to go (contrary to my previous comments and hopes).

Now I make the decision whether to break out my clippers and pull a Marine cut or head down to Sigfredo's and get Bruno to give me a clip. Or deal with what happens and hope for the best. I'm thinking the clip is the best bet but first I need to determine what I tell Number One Son.

I can say I'm doing it for my friend or just ask him if he wants to cut it really short with me (no way he's doing that!). So tonight I'm just having a few beers and thinking through the various options (in a public manner as posted in this blog.) We'll see what happens. I'm open to suggestions if anyone has sone great ideas! Cheers for now.


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Saturday, February 13, 2010

The hair products?

Today was the first day that I pulled a pile of hair out of my scalp. I blame it on Ireland (playing Frahnnz in the Six Nations).

I've no idea what this means. I still have the bulk of my hair and the Cytoxan is days old so not sure if I'll just lose some or all but I guess we'll play it by ear (and how much of my ear becomes visible!)

Keep you fingers crossed and pray to the lord of hair products! Not sure I'm ready for the Mr Clean look! ;)


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Friday, February 12, 2010

"I'm not an aminal...I'm a human be-innng!"

Ok - so I'm almost feeling human again. I did take my full dose of cough med and vicodin before bedtime and felt like I'd slept the whole night. When I looked at the clock it said 0612. WHEN I WOKE FROM THE DREAM AND ACTUALLY PICKED MY HEAD UP TO LOOK AT THE CLOCK IT WAS ONLY 0116. Where do you draw the line on your own body tricking you into believing you slept through the night?!? I did stay in bed (and slept) till just after 6 when number one son came in to wake us up. Though I've been coughing up a mess of stuff and awoke with a head ache, I seem to feel better now.

Yesterday I purchased a B12 supplement and stopped taking my B complex supplement. Today I even skipped the multi-vitamin. So far today my feet feel better but I've not really done any walking (aside from taking my son to school). I finally took a good long shower and was able to change the bandage on my catheter wound. I also had some of my mother's home made chicken soup (very well done mom!).

I can't say I'm fully rested but I feel a 100% better than I have in the last few days. Now I'm trying to clean up all the crap around our computer! Also, I'm working on Excel within the Mac - if anyone reading knows how to create macros or scripts for Excel w/in the Mac, please message me!

Thursday, February 11, 2010

Gladys, my feet are killin me!

Last night I slept without any meds. Felt wonderful when I awoke - only to realize it was 1230am and my feet were burning! I'm not sure what the cause of this is but when I last spoke with the docs they mentioned an after-effect and neuropathy. Neuropathy is damage to the nerve endings resulting in 'negative' (loss of feeling) and 'positive' (increase of feeling - aka PAIN) reactions in the body. Velcade is a known cause of Neuropathy but my last does of V was 12 Jan. I also noticed that a toxicity of vitamin B6 could cause this as well as a deficiency of vitamin B12. I happen to take a B-complex 100 (which results in a heavy increase in various B vitamins.) I'm going to stop the bcomplex and get a b12 supplement to see how that works. The doctors have always been ok w/ the B complex as it should help the Neuropathy. I'm also checking with them to see what's happening. The original source of the pain was a pair of shoes and it feels like i'm banging on my heels and the balls of my toes. Couple that with the fact that the house is sooo warm and lack of humidity that my feet feel like they're cracking.

I still feel a bit of the bone pain but unlike the other night, I was able to get back to sleep albeit with some very bizarre dreams. I then woke up at 630 to get the wife in the shower and ready for work only to find out she wasn't working today! Well, the kids still needed to get up so my morning wasn't completely wasted!

Took a nap after the kids went out for the day (and also took some more cough medicine.) So catching up on rest but still a bit under the weather. Hopefully I'll be better in the next day or so. I know I won't have any issues w/ food as my mother has cooked enough for the incoming army she's expecting to our house! Dad's suggesting a TaiTai cookbook (and after last night's dish, I'm in agreement). So look for book sales to begin in the near future!

cheeers.

Wednesday, February 10, 2010

Fair To Midland

Day three is here and I'm starting to actually feel like myself. The catheter is being removed today, much to my pleasure and delight! Yesterday I was miserable - the evening in the hospital, the day in the pheresis area, approximately 3 hours of sleep and just not being able to get comfortable. And then there was the cough that rattled through my chest and left my throat feeling as if I swallowed razor blades! So now, 4-5 drugs later, I'm starting to feel somewhat normal (fair to Midland).

I was given (from this point forward to be known as) the Aflack antibiotic, then after my harvesting I was given a scrip for zithrocycin (zpack), robitussin w/ codeine and I still had my vicodin. I took the cough medicine when I first got home expecting to get knocked out and sleep for a good three hours. I slept one! By the end of the night I got myself ready for bed, took my two TBP of cough syrup and two vicodin hoping for the best. When I woke I felt better than I'd felt in days. Then I realized t was only 330 in the morning. I took more cough syrup, one more vicodin and went back to sleep - or at least tried. I guess I just don't react to drugs a expected. So I did sleep from about 1000-0330 but nuthin after that.

I've now had the catheter removed and am feeling pretty good. Still am not over the cough/cold but can feel the antibiotics working. You are all lucky as I opted out of taking a picture of the catheter after it was removed. It wa pretty amazing - snipping the stitches hurt more than pulling out the cath.

Enough for now. (not checking for errors!)

Tuesday, February 9, 2010

Day 1.5 and 2

So they knew I had a cold and were worried if I had a fever. I was feeling like sh!t last night but didn't believe I had a fever. They told me to watch if I started coughing up anything with color and I promised to keep an eye out. So before bed, whilst attempting to gargle w/ Listerine, i choked, put myself in a coughing fit and sure enough - good, colored phlegm! Mm, mm, good! So then I took my temperature (I was watching for 100.5). In right ear, 101.3; in left ear, 101.5; switched to a real thermometer and got 101.1 and 101.3. So I called the hospital.

As a precautionary measure they had me come in and get some antibiotics via IV. I can't remember the name (kept calling it Aflak!) but it was Amiflax or something like that. It was really cool - prestone green in color! They took blood cultures, from both ports and both arms to see if they could identify if there was any infection. This was all done around 12/1230 and I stayed the night at the hospital. Needless to say, I never broker 100 at the hospital but they realized I definitely had issues. The night nurse ran into the pheresis nurse in the subway and told her she recommended a chest xray. Bottom line, fever's gone, chest xray was clear. I'm coughing up some miserable crap and they've given me a scrip for robitussin w/ codeine so I should be able to take some of that and sleep like I haven't slept in days.

Now for the good news! On Monday I was able to get 9 million tcells. My target was 10 million. Today I had already filled about 2/3's of what I had filled on Monday so I figure I'm in the 15 mm range. Catheter comes out tomorrow so between sleep tonight and the catheter being gone tomorrow I may be a happy camper - if i can get rid of this cold!

by for now!

Monday, February 8, 2010

Day 1

I survived. Not sure how much I was able to get but it wasn't difficult. The process that is. Sitting in a bed for 6 hours was miserable. My cold also is NOT going away and has left me beyond miserable.

I'm home now, just need to be cautious that my cold doesn't turn into a fever. Drinking lots of Gatorade and trying to cough out the crap.

Now since I promised - here's the T map with all the "wires" connected. There's a level of comfort that the device is set up with "color by number" tubing. Put the orange striped tubing when heading to Malden and the green strived tubing for bagels in Brookline! (my Boston fans should like that reference).




Till tomorrow...


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Thus far today...




This is what we're after. The clearer stuff at the top are the tcells. I should be done for today soon.

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My own tap

So I'm getting ready for the harvesting. The nurse needed to take some blood for labs prior to starting. I asked, "which arm" and she replied, "neither". I have a direct tap!



Literally - she just plugged in, pulled what she needed and I just laughed.

And here's a pic of the pheresis machine.



Doesn't it look like the T in Boston? I'll post an 'after' shot as well (when all the tubes are hooked up.)
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Super Bowl - Super Sick!

I spent yesterday miserable. The cold I had been fighting last week kicked into full gear Saturday night and left me miserable on Sunday. What's better - the Neupogen started to make itself known as well. Now I understand bone pain! And yes, it's sort of like rugby, afterwards, after the beer has worn off! I didn't want to lay down as I needed to bend at my waist/hips to relieve the dull ache occurring there. I was able to get myself a bit of a nap, waking only once, by my own snoring. I did end up taking a vicadin along w/ another mucinex and started to feel better by the middle of the SB game. It was probably the first beer-free game I've watched since I was in Ohio and the parents let me stay up to watch the Denver game (brother will laugh at that - were the broncos in the SB in the late 70's?)

Today we venture into the harvesting. I start around 830 and have about 6 hours sitting in a bed with my blood running through a cycler. I'll post when it starts (keeping everyone in the play by play) and will have plenty of movies/tv shows on my iphone and my kindle to keep me busy. Wish me luck!

Catheter and Bone Pain

Ok - this one is really only for those that are currently going through or perhaps will be going through the harvesting process in the near future. If there's anyone out there that has gone through this and would like to add their comments, please do.

Bone Pain - the Neupogen increases the creation of the t-cells that you're going to harvest. These t-cells are created in the bone marrow. So imagine if you did 10 push ups a day then you'd feel pretty good and you'd be able to do 10, perhaps 20, without skipping a beat. Now today, and the next five days, you need to do 100 pushups a day. You can imagine the kind of pain you'd feel - and that's what's going on in your biggest bone marrow locations: hips, legs, chest, upper arms. I hadn't felt this till the last day of the neupogen shots and it was like having a crick in your back and you couldn't lay down or sit; and standing up, after awhile, would make you sore.

The harvesting catheter - the catheter used for the harvesting is more a temporary insertion as we'll only need it for a few days. If I was doing a transplant immediately after then they may have put in a medi-port or porta-cath (I can't confirm that, you'd need to confirm w/ your doctor). As seen in the posted pics, this piece is long. The doctor warned me of a potential for pain in my shoulder, behind the catheter. I haven't felt that but I have felt something similar. I can literally feel the catheter in my body. I am crossed as to whether or not I should have viewed the xray pic I put up showing the catheter placement. If I wouldn't have known I may have been better off. Having said that, knowing let me know it wasn't something bizarre happening to me when I laid down at night.

As mentioned previously, the catheter is flexible but not soft. So as you move your body, it's putting pressure internally which can cause some pain. I'm not playing any sports and I've been sick all weekend so I've not been doing anything strenuous. However, what I've noticed, is two things:
1) dull pain - I feel the dull pain in my shoulder, behind the cath and I can sometimes feel it in my chest on the other side.
2) when I lay down at night it takes a good 15-20 minutes for everything to 'settle' and allow me to lay down. It feels like something is out of sorts and you may need to stand up, stretch about at the shoulders and then lay back down. The vicadin didn't seem to help this much but I think everyone reacts differently to those drugs.

Again, the purpose of this post is for anyone that has the disease and is going through this. Sometimes the explanations you get don't full prepare you for what really happens. I hope this helps and if you're going through it as well, please put in a comment with your experiences.

Saturday, February 6, 2010

The Whole Story

Let's go through the whole story of what happened yesterday. It was tons of fun and is part of the reason why I hurt so much yesterday. I have to say, one Vicadin into the day, I'm still sore but I don't think I'm as bad off as yesterday (this was posted earlier this morning - took 2 more Vicadin, a Mucinex and saw Eng beat Wales in rugby so I'm all better now! :)

We arrived just prior to 0730 and registration wasn't available yet so they just sent us on to surgery. It was there that I started things off right. As I'm holding the door open for my wife, I let my hand slide down along the emergency release bar and my pinky found its way into the housing of the release bar, proceeding to get stuck and twisting/pinching my pink causing me to scream, "ouch!" and having my wife and the three nurses enjoying their pre-surgery coffee to look at me as if I was "one of those people". "Any blood?" and "do you need anesthesia" were the two laughing comments I received. No blood, no foul - they sent me back to the room to don the hospital fashions: smock, robe, footies and a beautiful blue hair net - 'in fashion you're either in, or your out'! They then showed me the catheter that will be put in (see prior pic) which had me a bit nervous. As I mentioned to my brother today, this isn't like a piece of soft, flexible aquarium tubing - this is a bit stiff (see my reference to not being able to put my arm over my head for confirmation on this point.)

I avoided all thought on the catheter and was met by the nurse, anesthesiologist and, finally, the Doctor. All of them gave me the warnings - nausea, going under, you didn't eat anything, how much do you weigh - but the one that caught me most off guard was the fact that we are putting a pointy piece of plastic into a vein in your chest - and there is the slightest (really slight) chance that we may puncture a lung - , "you're ok w/ that, correct?" "uhhh....sure doc!"

Then it was time - and Lil was brought to the waiting room while I was brought to the OR. I've never been to the OR before. I've only seen the OR on TV or in movies. I've never been to the OR before - and it caught me COMPLETELY OFF GUARD!

My first thought was either Star Trek or Aliens - it was all white, centrally focused on one area, very clean and two big important looking lights over an extremely narrow operating table. I know I paused upon entry - it all got VERY real!!! I sat down on the table, which was heated so I was fine in the gorgeous hospital smock (that of course, opened in the back). There was a towel rolled, and placed lengthwise on the table so that it sat under my spine causing my shoulders to roll down (thus opening them for easier entry). Everything started happening at once - one of the male nurses ("do you need any anestehsia" from before) said, "hi - how's your pinky?" I couldn't recognize anyone due to the mask. I asked them if I could get a mask (and I think I was ignored). The anesthesiologist (i need to find a shorter way of saying that - it's tough to type) then started to put in the IV with a convenient table attachment that my arm can rest on.

Now this guy was all about effieciency - I've been through quite a few IV's in the recent months and can tell the good, the bad and the ugly. He was hideous - it hurt, he then taped it down, pushed on it a few times for good measure and started it flowing. He then went to the other side, wrapped my arm in the blanket over me and then tucked it under the table pad so my arm would stay in place. My shoulders were wider than the table by about two inches on either side, if he didn't do this, my arm would have hung by the side of the table. He then returned to the other side, took my arm w/ the IV and proceeded to wrap that arm, giving a few good nudges to the IV, and tucking it under the pad. At that, he removed the table attachment. While this was going on, the other nurse proceeded to strap me in - big belt around the legs and waist, pulled tight so I didn't roll off. I went from Aliens to Frankenstein in no time flat!

The doc then walked in (couldn't recognize him due to the mask) and asked how I was doing. I told him I wasn't prepped for the OR - had to repeat this as one, I was a had a bit of nervous laughter and two, his hearing aid wasn't working too well (forgot to mention that earlier!) The table then started to tilt up at the feet and I was told to expect a warm sensation in the IV to which I replied, "I don't feel anything warm but I think it's starting to work as I'm feeling kind offfffff.......(out cold)."

They then started moving me around and I was a bit pissed - I mean, why couldn't they get me in the right place so we can just get this done and over with.... Then I realized we were over and done with. They asked me to step down and sit in a chair - at my first step I said, "wow, this stuff is good." They then covered me with two warm blankets and rolled me out to the recovery area. I fell asleep for a bit, then the nurse came and took my BP and Temp. He told me to go back to sleep but by that time I was up and he got my wife for me. He also asked if I'd like anything to drink and brought me a great cup of coffee, graham crackers, peanut butter crackers, etc. The xray tech came in later and took pix and also told me where to get the best bacon, egg and cheese on a roll (which was exactly what my "doctor" had ordered after going through all this crap! I then had the bright idea of posting the xray and he burned me a disk of the shot and my last three bone surveys!

Two nurses came back and started fixing me up, removing the IV, etc. Apparently I was fine. One talked to Lil about the customer service survey they'd like me to complete (WTF?) and the other proceeded to tell me I shouldn't be operating heavy machinery, driving a car, signing any documents (really, I'm not supposed to sign anything - not like I had any big contract signing scheduled that day, but really?) He then told me that for the next 12 hours I should only have oatmeal or something bland like that, "...uh, so no bacon, egg and cheese on a roll?" "Oh no, anything that might repeat on you wouldn't be good as you may get sick". I nodded my head while crossing my fingers - nothing's keeping me from that BEC on a roll! I spent the next hour waiting on my Neupogen injection as the nurse that usually gives them was out and everyone was a bit flustered. We finally finished and left for the BEC!!! I never did get to registration - I wonder who's paying for all this?

Instead of going to the technician's recommendation we found a quaint coffee shop that had great coffee and a BEC on a roll. Only issue here was the roll was a very fresh, very healthy multi-grain nut roll - not the greasy spoon I was hoping for. But that's ok - there was fun to be had here! The place was small, three two-tops by the window and only about 6 other tables in the place. There were three girls taking up most of the right side of the restaurant so we took the middle table by the window. While doing this, a guy walks in, survey's the tables and sits at the one next to ours - I mean really! Worse - he brought in a Starbucks coffee and sandwich from across the street! But wait, there's more - he's an actor and was studying his lines - "Dammit Jim, I'm a doctor", "But Margie, I really DO love you", "This town isn't big enough for the two of us", "Let me introduce you to my leetle friend!" I sat there quietly and ate my BEC and tried to talk to my wife. But in another, alternative universe, I was turning to this guy saying, "go back to Jersey and don't quit your bartending job - you suck!" It was the meds speaking, I think the nurse had earlier mentioned, "don't sit next to any dufuses in a Chelsea coffee shop" in addition to the contract signing.

I decided I didn't want to go home and instead ventured to the Apple Store - this was my first big mistake. I should have gone home and gotten the Vicadin - as you saw from my previous posts, I fell to its sultry suggestions rather quickly as I was sore with a capital ORE! But no, we went to SoHo and found the Apple Store and proceeded to chew this guy's ear for 45 minutes. I finally realized he may be sick of me when I said I've no more questions and thank you. To my surprise he asked if he could ask me a question (much to my wife's dismay and crestfallen face as she was sure we were finally going to be able to leave). He asked my thoughts on the iPad - to which I then needed to talk for another 20 minutes and display my Kindle. We finally left and it was the worst subway ride ever - I was beat.

I got home and immediately sent my wife off to CVS for the vicadin. I laid down, only to find out that really hurt. I spent the rest of the day trying to find a comfortable position sitting on the bed watching primtimetv on demand (catching up on Caprica). She came back at one point and I thought, "finally, the drugs have arrived", only to be told it would be another 20 minutes before she could pick them up. The rest of the day was uneventful - I was able to update posts, pull my xray pix and finally call my mother. The vicadin didn't seem to do anything and now I was really getting that chest cold that had been creeping up on me. My poor brother - he had been fielding all my mother's calls as she didn't want to bother me or potentially wake me up as my one post, early in the morning, said I can't take calls! I give her credit - she listened!

That's all for now - this seemed a bit drawn out - I hope you enjoyed it - it's much better in the telling rather than the writing!

I slept!

I made it through the night without too much trouble. I definitely feel better today than I did yesterday. I woke up about 0230, used the boys room and took two Tylenol for the remainder of the night. The two vicadin I took prior to sleep didn't really do anything.

If you've seen the xray then you should understand this next part. When I put my right arm up over my head we're bending the cath and it puts pressure on the right side of my chest. So I've pretty much laid flat the entire night. I did test laying on my side and was able to do it but not for any length of time.

I got better sleep than I expected and feel pretty good for now.


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Friday, February 5, 2010

You don't believe me?


Ok - proof of how big this thing is!

You'll have to click and enlarge the image but the left hand pointer is pointing at the end of the catheter and the right arrow shows where it comes out of my chest (not my neck as previously, and mistakenly, posted). If you look closely, under the right arrow, you'll actually see the two red/blue pieces that are actually outside of my body. They're very, very faint.

I've got a whole day of stuff to write about but will get to that later.

...I'm waiting

Ok - it's about 25 minutes since I've taken the Vicadin and I still feel like sh&t! I'm fine, just sore as sh&t!!!

More later.


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Wow backwards is OUCH!

So the doc asked, "what kid o pain killers do you have at home?". I'm guessing that the respectable, cancer patient, household has much more powerful painkillers than just Tylenol. The doc said, "I'll give you a scrip for Vicadin." I said sure but I wouldn't need it.

I lied!


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WOW!

I'm out of surgery. More on that later. But look at the freakin' size of the thing they put in me. The whole thing is in there. It's not cut to fit, they use the whole tube!






More later. Enjoying coffee and Graham crackers. I can't take phone calls (mom).

And then the pig says....

Have you ever walked up on the end of a joke and not had any idea of what the joke was about? But of course, you nodded your head and smiled as if you were there the entire time, trying, desperately, to grasp the meaning of the joke and ending with laughter only because everyone else was laughing as well.

Today I have the surgery to insert the catheter in a vein in my neck. This is a simple surgery that will allow the pheresis (sp) to take place at a faster rate (sort of like cable modem vs dial-up!) And beginning Monday, I start the harvesting process. It is true that I had a heavier dose of chemo (Cytoxan) last week and I've started getting the Neupogen injections Wed. But neither of these have really had an impact of any significant level. So for me, I feel pretty much as I have felt. Perhaps my stomach bothers me a bit and I seem to be breaking out on my arms and shoulders like a big-time wrestler on steroids (without, of course, the muscles and tight jumpers!) Bottom line though, I really don't seem to be noticing anything. My disease is in "Near Complete Remission" which means if you look at my blood work you can't see anything. It's not until you look very closely, with a very big wrench, that you can find a small semblance of what was the disease. This is a good thing!

Perhaps I've entered the conversation a bit late - because the number of emails, comments at work, and, of course, the calls from Mom have me wondering if perhaps I really look like the defecation of a large canine! Three people at work wishing me luck and hoping everything goes well. One that's going to send me positive thoughts. Various emails all with this note of concern. FIRST, LET ME BE CLEAR - IT'S ALL VERY MUCH APPRECIATED!!! Second, let me be doubly clear - I'm fine! I'm going to be fine! I'm going to get a giant pint of Guinness when this is all through (perhaps more than one!)

Yes, I have cancer, and yes, I've beat it into 'Near Complete Remission'. I will harvest the t-cells and then continue on as if nothing has happened. I may still be on steroids and may have some very interesting stories about the in/out process of harvesting, but I don't expect to be in a position where anyone should worry. And I most definitely do NOT believe I look like an example of canine defecation.

So, should you start offering me concerns and wishes, don't be surprised if I respond as if you've just entered two thirds of the way through the joke with, "....and then the pig says, what do you think I am - a piece of meat?!?" and then start laughing hysterically.

Just chalk it up to me being a nutter as always! Have a great day and I'll try to send pix from today's surgery - supposedly they're giving me some type of anesthesia that will put me into a hypnotic state. I'll make sure the wife has my iPhone so we can video tape me clucking like a chicken!