The SCT Process: What Would I do Different?

This topic has been first and foremost in my head since the day AFTER I arrived at the hospital for my stem cell transplant.  And every time I sit down to draft this I get a big block and can't figure out what to say first.  I'll thank my mother for helping me start to throw my ideas down on a table and flesh out what I want to say and now I'm finally sitting down to start drafting my post.  There are a number of readers that are either just starting or getting ready to start their own transplant process.  I am hoping that what I write here is in some manner helpful.  I will post to get something out there as there is an immediate need.  However, I will also update and edit, leaving this as a work in progress.  I would also ask that those of you that have been through the process, please tell me what YOU would do differently.  Not just for my sake but for the roughly 700 unique visitors to my blog weekly.  I don't have a large following but I've been amazed at how many people read and respond and the global reach of the blog.  But that's not what we're here to talk about....

WHAT WOULD I DO DIFFERENT?

Overall, think small quantities.  Going in I was thinking I wanted water and gatorade.  I drank lots of water but lost the taste of gatorade after the second day.  If you have someone visiting, they can always bring you more but think small quantities, variety and flexibility.

Clothes and other "hardware" 

You'll need underwear and you'll need lounging clothes.  I brought a pair of shorts - never wore them.  The hospital will not do laundry and you'll not want to wear a "drafty" gown.  I recommend (for guys but I guess they'll work for girls as well) Hanes 100% cotton lounge pants (target/walmart underwear aisle).  they have a drawstring - you will lose weight!  If you have someone who can help you do laundry then bring enough for four days and have them take and wash the dirty clothes every two days.  That's four under garmets, four shirts (loose t shirts) and I would say three pants but I only had two.

Scarf and hat - they recommend you bring but I wore the scarf once and the hat, only for pictures.  This is dependent upon the hospital - how cold is your room, etc.

Slippers - you can bring socks, I would recommend they be 100% cotton and 'breathe' but slippers you can take on/off and will help make it easy if you want to go for a walk.  I almost never wore socks in the room - my feet were too hot.

A "Husband Pillow" (see images here) that can be used in bed to give you better support when you want to sit up.  In my room I had a chair and a bed.  I also had a table which would raise/lower so that you could eat/work/play on the table while in bed.  However, if at the chair, the lowest setting of the table was too high and typing on a laptop was uncomfortable.  For that reason I would also consider bringing some sort of pad for the seat as the chair itself was uncomfortable and not a good spot from which to work.

Your "toilet kit" - you can't use a razor, you won't need vitamins or aspirin.  Do bring deodorant, body wash and shampoo.  You will smell - they say garlic, I say rancid!  Bring stuff to cleanse yourself.  It won't work (you'll still smell it) but you will feel better.  Be prepared for a miserable shower as well and you can't get your pic line wet.  Mouthwash - you'll want to keep things clean and avoid mouth sores.  I recommend TheraBreath and it was cleared by my docs - it's a no alcohol mouth wash but does give a good cleaning and is similar to the bi-carb mouthwash the hospital uses.  You will NOT be able to use any mouthwash that is alcohol based.  You will also want an extra soft toothbrush and mild toothpaste.  I would also recommend having Aquaphor for dry skin - this is good stuff and the hospital may be able to prescribe it for you.

- Your kit needs: deodorant, body wash, shampoo, an EXTRA SOFT toothbrush and very basic toothpaste (not too minty), TheraBreath mouthwash, baby powder and Aquaphor.  I'd like comments from anyone if they think there should be more.

Food and appetite

The hospital food is horrible - if you have a better experience, please let me know!  Talk to your nutritionist and find out what you can and cannot bring to the hospital.  Also confirm if you will have a refrigerator in the room or available to you on the floor.  Remember, your tastebuds will change.  Ginger Ale will sound great, until after the first few sips, then it will be syrupy and sweet.  Someone recommended Fruit Loops which were great, the first day - now I have an entire box of FL!  Remember, think in small quantities.  Also think about what's being done to your system.  I am currently (as of 20 Feb 2013) Day 21 and my "processing system" is still not back to normal.  You may be constipated and you may be loose - think of foods that can assist in those areas.  Additionally you will lose weight.  You may  want to lose weight but this isn't hte way to do that!  There will be days when you can't eat but for when you can, have stuff on hand so you're not reliant on hospital food.

Here are some recommendations on foods.

- instant rice - Here is an example  - this is microwaved for 1 minute and sits for another 1 minute.  It's bland but it's filling and you can add your own condiment or sauce if desired.  Just be cautious with spicy sauces!  Great for 'binding' food (if you're loose).

- apple sauce - plain, not cinnamon - get a few of the single serving and try to get apple sauce, not manufactured "apple flavored mush", in other words, avoid the chemicals if possible.

- dried fruit and jerky - dried mango, dried apples, dried apricots - just be sure to get the dried fruits that are simply dried fruits.  Look at the ingredients, it should say "mango" and nothing else, no sugar, sulfite, etc.  Then you're getting good (for you) dried fruit.  I would also recommend beef jerky - this may not be of interest but it is salty and loads of protein.  Avoid the 'flavors' or get in small quantities.

- string cheese - just a few and only if you have a 'frig.  I didn't eat much of this but it was an easy and simple snack.  Again, I'd go for flavor so do NOT get "skim" or low fat string cheese - I want it fat and salty! :)

- Ramen noodles - keep it simple, no spicy noodles, but ramen is easy to make and has a strong enough flavor that you can taste it.

- saltines - need I say more?  The quintessential sick food!

- Cereal - if you can get a variety pack of basic cereals (cheerios, raisin bran, etc.) that would be great.  Single servings and offering a variety of options.  Also, these cereals can be eaten with or without milk!

- Smart Water - you are going to want to drink water.  SW offers water with electrolytes.  I brought gatorade as well but after the first day or so it was just too sweet.  Make sure the docs know how much you're drinking as they measure input and output (what you put....out...into a bottle....)  As you're going to be on an IV for fluids they know how much is going in.  with me they were putting about 3k in but getting 10k out - I was drinking 4L of water per day.  That was usual for me.  Bottom line, I like the water with electrolytes and no taste or sweeteners.

- mints or similar - Altoids were too much but the mini Altoids would be fine.  TicTacs would also work.  You can also bring Halls cough drops but I would veer towards cherry rather than the old fashioned mentholyptus version.  Bottom line, most sweet things will feel syrupy and leave a taste in your mouth.  

Exercise

This is a part of the process upon which I wish I had placed focus.  When I returned home after Day12 I went right back to my regular ways and walked about 2.5 blocks.  At the end my hands were on my knees, I was coughing and I really thought I was going to have a heart attack (and I have NEVER felt that way.)  I believe it was because I had done nothing, absolutely nothing!  That is something I would force myself to change!

- walking - when you're allowed out of the room, take advantage and just walk around, even if it's in circles.  

- yoga - Lisa D told me she's walking 75 feet, three times per day and also doing some light yoga in her room.  I think this is a great idea but if you don't know/do yoga, then basic stretching is also something to consider:

 * touch your toes (feet together, without bending your knees)

 * torso twist (hands on hips, turn upper body as far to left as possible, then far to right, repeat)

 * leg lift (stand and lift leg up so that knee is as high as waist, bring down, repeat 10x, switch legs)

 * calf lift (stand, feet together, go up on toes to stretch/work calves, return (slowly) and repeat)

 * single leg stand (works your hips, balance on one foot, try for 30 seconds, repeat other foot, if this is too easy try rotating body, towards foot you're balancing on)

 * alternate leg lift (sit on edge of bed and lift legs, straight with toes pointed, to height of bed and bring down slowly, repeat 10x and do other leg.

All of these are very basic, very simple exercises I'm either making up or remembering from my workout days!  I'm not a physio, not a doctor, these are very basic ideas but you know your body - you need to gauge and do what you can.  I would love other suggestions.  At the end of the day - keep your body fit when you can.  Keep nimble and keep active, don't do like me and sit in bed for 7 hours watching Swamp People! :)
** Update - (compliments of Kim's husband's bout with MM)
 - Daily Goals - they had a whiteboard in the room and he set his daily goals.  How much he would eat that day and how far he would walk that day.  The hospital had given him distances so that he could walk XX number of times around the ward and it would equal a mile.  His daily goals were: 2 miles/day, 2 liters of fluids per day, 2 meals per day.  I think this manner of thinking is wonderful!

The Help (whether you want it or not)
You're sick or you're a caregiver and all your friends will feel bad if they don't do something for you.  And they'll keep asking or they'll just show up with a plate of food that you're not allowed to eat!  Or you'll get flowers or stuff that a) you didn't ask for and b) probably don't want or need.  They'll feel better and you'll have to deal with it - unless of course, you Manage The Help!  People will want to help and as either the patient of care giver you can accept this (take advantage of it) or not.  My direction to my wife was take advantage of the situation, don't try and carry the world on your shoulders.  When people ask what they can do to help, instruct them and don't feel bad about it:
 * can you pick up / drop off my dry cleaning?
 * can you take the kids for two hours on Wednesday so I can do some shopping
 * what, you'd like to go shopping for me?  Here's $40, can you get me bread, milk, ....
 * I would love chocolate chip cookies
 * that's so nice that you've offered to make chicken but I can't eat chicken, can you do a meatloaf?
 * YOU GETTING THE IDEA?  Take advantage of the situation and manage the help!
As the patient, you should also take advantage of the situation.  When my brother, parents spouse came to visit I would try and think of very specific things I wanted: water, gatorade, string cheese, a tall skim latte, a bagel toasted with butter (they have to buy the bagel and toast it at home, you can't get it from the restaurant).  They want to help, it will make them feel better and you'll get what you want.  

Your Calendar

This will be explained to you by your doctor but the calendar is essentially the same for everyone.  The day you get your cells back is "Day 0" (this entire section is referencing an Auto Transplant, an Allo may be similar but not necessarily the same and you would need to confirm with others and your doctor the differences that may apply).  The significance of this is that the doctors will reference these dates as a guideline for where you stand or where you should be in the recovery process.  For me the timing was as follows.  I'll note below that a friend of mine had a different time frame as her SCT was 4-5 years ago.

Day -1: This was the day I arrived at the hospital.  This was the day my pic line was inserted and that evening I received my Melphalan dosage.  This could change for you depending upon where you're having the procedure done, etc.  I have a friend who's arrival date was day -5 as they waited four days AFTER the Melphalan prior to doing the transplant but that was four years ago.  I know someone else that went into hospital last night (19 Feb) but won't have the Melphalan till potentially Thursday.  Important part here is working back from Day 0.

Day 0: the day you have your stem cells transfused back.  This is usually 12-24 hours AFTER the melphlan.  For more details on this see my post here.  This is also your "birthday" so I was told!

Day 1: I was beat - from everything that happened day -1 and day 0 I was just beat.

Day 2 through 4: This is no-mans land, you're not really wiped out and your numbers are starting to drop but, for me, it was still not too bad.

Day 5 through 7: I think I got into bed around 18:30 on day 4 and didn't really get out of bed till the evening of Day 6.  It wasn't really till Day 7 that I felt I was turning a corner.

Day 8 through 10: you're starting to come back and I felt like I had turned a corner but it's important to remember you have near 0 immunity - you need to be cautious and keep up the stuff they tell you to do (in other parts of this post I'll identify that.)

Day 11 through...: This is the point where you are starting to recover.  For me, my numbers were at a "passable" state.  Ask your doc what they're looking for to make you eligible for discharge.  They're going to be watching platelets (ability to coagulate your blood), white blood cells (immunity) and neutrophils (also immunity).  If you have no other occurrences (infections, cold, pneumonia, etc.) then you can be looking at a potential discharge between Days 12 and 15.  If you have other complications then your time frame is going to be dictated by that.  Which brings me to the next topic....

Listen To The Docs

You're going to get lots of drugs.  Learn what they are and what they're used for.  The goal is to get you through this process.  This process is tought on your body and the docs, more importantly, the nurses, will help make sure you're doing ok.  But certain things you'll need to do.  Here's a quick run down of what I had and why.  I will be updating a more specific description of each later on my other page but for now here's my thoughts.

- Nystatin - the doc is most likely going to give you this in hospital. This is EXTREMELY important. This prevents fungal bacteria in the nether and more 'swampy' regions!  There should be an ointment that is applied to the rectal area (with bacitracin) and a powder that is applied down below and under the arms. where other people being sick can be an issue for you, it's the stuff your own body may produce that could be lethal (causing a staff infection). Make sure you use the Nystatin - as miserable as it is - it's a great precautionary measure. It also comes with a mouthwash - more like mouth paste! You rinse and swallow (tastes a bit like butterscotch). It coats the gums/mouth and also prevents bad bacteria in the system.

- Zofran - anti nausea med, they gave this to me twice a day (morning/evening).  They only day I got sick was the day they were going to take me off the zofran and I threw up miserably.  This will help you manage the nausea.

- Protonics - this is like an antacid (zantac, prilosec).  

- Accyclivir - anti-viral - will protect you against shingles

- Levaquin - anti-biotic - protect against non-viral issues

- Benadryl - got it during the transplant, as a pre-med, to protect against any allergic reactions to the preservatives used to keep your stem cells.  This will put you to sleep.

- Ativan - wow - good stuff!  This will knock you out - it's a sedative, used to relax you.  When used in conjunction with others it made me loopy and hallucegenic!

- Decadron - aka Dexamethazone - steroid - enough said!

- Oxy Codone - an opiate, pain killer.  I had it on Day0 as the pic line was starting to hurt.  OxyC in conjunction with the dex, benadryl, ativan, etc. helped me be hallucinogenic! 

- Immodium - when needed

- Colace - when needed

I believe that's the extent of the drugs I had taken and why.  Coming home I still take the Accyclivir and the Protonics.  Zofran I only took once since home.

Occupy Your Time

You'll want things to do.  You'll need things to do.  However, that will be based somewhat on the environment.  I had my laptop and a dozen things I wanted to get done.  But I didn't have a place I could sit comfortably to work on the computer.  I brought a cribbage board and a deck of cards - I played solitaire once, that's it - again, the environment, it just wasn't comfortable to play anywhere.  I did read on my iPad.  I did watch a movie or two on my iPad and macbook.  I also had a small speaker (JamBox) that I would use to play music.  Bottom line, you know yourself, have things ready: puzzles, word find, crosswords, sudoku, movies, books, knitting, whatever floats your boat!  You will be board, find things to occupy your time and keep you mentally stimulated!  I used my blog as a way to keep me occupied and everyone else up to date and found a bunch of people that actually enjoyed it  Thanks to all of you.  

I hope this is helpful and offers advice that's of use and of interest.  I would like to keep this as a work in progress offering suggestions from others on things they found useful or they would do differently while in the hospital for a stem cell transplant.  

Please comment and please pass this along to anyone and everyone!  

Cheers...bill

SCT Day 21 - What is Sleep?

Sleep is the natural, restorative time your body uses to regenerate.  This time is needed for your body as is exercise, eating and physically working your brain.  Where people may consider eating to be the most important part I would challenge that sleeping, if not done correctly, leads to a lack of focus and interest that can cause a laziness that would apply to eating, causing you to eat the wrong things and then impacting further your bodies abilities to do the other necessities in the list above.  It's 04:52 and I hope I'm making sense but I am NOT proofing my comments - just go with it.

I bring up sleeping as it is 04:52 and I've made coffee, rearranged one of the cabinets in the kitchen due to new stackable dinnerware (thanks Mom and Macy's!), and filled all my water bottles.  I also tried to put myself back to sleep from 04:00 to 04:25 before I finally gave up.  The inability to sleep has somewhat plagued me since returning from the hospital.  But last night was more bizarre than most.

I went to bed slightly after 22:00.  Read two pages and dropped the iPad on my face - sure sign to turn out the light.

I woke up at 23:45 - potty break.

I woke up at 01:00 (caught wife playing games on iPad).

I woke up at 02:00.

I woke up at 03:00 - had a dream that there was a ghost/spirit in the house who had trouble sleeping -he's now cured - i should be able to go to sleep (you can't make this shit up - love the dream state!)

I woke up at 04:00 - so much for the f'ing ghost!

I gave up at 04:25 - see references above.

When I list these times I am NOT joking - I literally am waking up like a Japanese train schedule.  at the EXACT top of the hour.  Seriously!  This is almost scary.

Upon waking, and then trying to get back to sleep, your mind is on speed.  I'm not sure if you've ever noticed it, an perhaps it's only me, but my mind bounces around thoughts like a pinball machine.
> focus, need to focus on nothing, put yourself to sleep focus on nothing at all, like the...
> ...empty storage bin downstairs, finally got that letter our, i'll need shelving as well as milk crates to raise the floor in case of flooding...
> ... we need milk, will have to get milk in the morning and Friday means we need fish, dilyn likes fish sticks...
> ...need to stick to cleaning up the files and getting all the tax paperwork over to our accountant, need to focus on this today...
> ...need to focus, need to focus...shit!  I was supposed to be focusing on sleep, ok deep breaths, in, out, in out, focus on nothing, create a blank space, try to sleep, how long have I been doing this...
> (sit up - look at clock on cable box) - DAMMIT - NEED TO SLEEP...
> ...I can't sleep, I've done absolutely nothing at work - next week I need to start reading emails, I'll take it slow but it need to...
> ...slowly get back into exercising, just stretching, I need to at least stretch and get my legs back and operational and do some sit ups to get my core, back and hips back and functional.  I'm sick of my calves being sore...
> ... and I need to walk more, perhaps up to Restoration Hardware and I'll get myself a new iPhone case as I like the one we got Dad for Christmas...
> ...oh shit - forgot to tell Lil that I ordered a new desk chair and what are we going to do w/ the existing one, we can keep it for when we need an extra seat at the table but where to put it when not in use...
> ...and then there's the rice cooker and the drawing table I ordered as well, I really need to clean up the desk, and my closet, and the cabinet w/ electronics and cords, and all our photographs, still owe my brother pictures of the snowmen, I'm so f'ing tired of being unorganized...
> ...I'm so f'ing tired...I NEED TO GET SOME SLEEP, ok focus on nothing, stay focused, in, out, in out, I'm sleeping, I'm sleeping, what time is it?  Shit, might as well get up.

Seriously, this is what races through my brain, this insane stream of consciousness, mental diarrhea, that causes me not to be able to get back to sleep.  Before bed, every night (except for those nights where I've absentmindedly drunken myself into a stupor, I read a book - the sole reason is to put my mind into a far away place where I don't think about anything.  This helps me fall asleep.  The problem with that is if I try to read at 04:25 then I will be reading until 06:00 - I'll get into the book and burn through twenty chapters.  I know, I should keep some fun medical manuals or equity research to help me fall asleep but I just can't do that.

For now, I've accomplished the one thing I wanted - putting this stream of consciousness to paper.

I hope you enjoy when you wake up (you miserable bastard for being able to sleep! :)

cheers,  bill

SCT Day20 - quick update

Today is day20 after the transplant (day0 being the day of the transplant) and day22 after the melphalan.  I'm still needing to use my electric razor to shave some of the nubs so my prediction (second prediction) is still wrong!  It's there, feeling like sandpapaer, but not hurting when I touch or sleep.  The last time I lost my hair (after Cytoxan) I don't remember the timing, though I really could just go back and look through my blog for that info that's just too much work. :)  But the last time I was definitely down to a Pledge shine without any razor.  I felt like it went faster but I was more 'shy' last time (believe it or not) and wasn't posting to god and everyone back then!  I am guessing that I will be down to the Pledge shine in a week or so but am not making any predictions any longer.

Biggest issue I'm having right now is sleep, or a lack thereof!  To be truthful, I don't believe that I am sleeping any less than prior to the transplant but that was on a normal work/life schedule.  Now that I am supposed to be sleeping I just can't seem to do it, more specifically, do it through the night.  I've been on essentially the same schedule for about a week.  Whatever time I go to bed (last two nights have been just after 23:30) I am up around 02:00 (potty break) and then around 03:00 or 04:00 and then  again around 05:30.  I will take another potty break at 05:30 and then can get back to sleep until around 06:30 but I really should be able to sleep from 02:00 to 06:30 and that part is eluding me.  During these time periods I find I may be in bed, eyes closed from 05:30 to 06:30 but I'm probably only sleeping for 20 minutes.  I will pop into dream state and then awaken.

After I first got back home I was on this schedule but I also had a pounding headache, usually in the back of the head, that didn't help me sleep.  The hair was also a problem as every time I rolled over I would feel 50 hair-needles poking me in the head.  I think that, lack of sleep, hair needles, and being tense due to both was causing issues in my neck/head region causing the headache.  The headache wouldn't last into the day but would potentially return at night, mostly due to too much time in front of the computer or just lack of activity (watching swamp people for 7 straight hours!)

The headaches are gone - the other issue was cramping or soreness in my left calf and around or behind the knee.  This has been much better recently but it was a big hurt that I just had to deal with unfortunately.  I did find that an hour drive yesterday, back from CT, caused my leg to be sore and if I then walked, at my normal pace, not the post-transplant pace, my calf would cramp up and become sore.  If I stopped for any period of time (i.e., long enough to order a skim latte from Sbux) my leg was fine, but the minute I started pushing it, the cramp would begin again.  It was a bit sore last night but not that bad.  What I had been doing, for both the leg and the neck/lower head region, was using Olbas oil, a Swiss massage oil that can also be used like Vick's for colds.  Great stuff and I would highly recommend for cramps, etc.  It's strong like Tiger Balm but is an oil and not a wax.  It smells (and will clear your nasal passages) like Vicks and like either, PLEASE wash your hands after applying.  It will sting if you absent mindedly rub your eyes or touch other, sensitive parts!

My @ss is also killing me from sitting at this chair in front of the computer in a completely un-ergonomic position on a hard chair with a small cushion.  For this reason, while typing this update, I've put in my order at The Container Store for a new desk chair!  As I'm going to have to be working from home for awhile I need something I can sit on!!!

That's all for now - I am working on a post re; What I Would Do Different Next Time - I know there are a number of you getting ready for a transplant  in the near future and you want this info.  I will try and get something up in the next day or so!  Once I have my new chair! :)

thanks, as always, for reading!  Bill

A Good Question - actually, two!

I should put this somewhere on a page but I'll have to think about where and best way to present.  Bottom line, a good question (thanks to Christina Yoder for asking on the MM support page on Fbook) and notes I gave to a friend (thanks to Nancy Newby for making me put this down) who's going through her RVD cycles and dealing with the issues I have dealt with.  Hopefully others will find this useful as well!  I still owe everyone an update on the SCT and what I would do different - I promise, it's coming!  And if you read on to the very bottom you get a prize!  On to the questions! 

Question A) "Hey guys, a lot of you communicate with numbers. When is the point where you can actually 'understand' what to look for?" (Christina's question)  A good question, especially for those recently diagnosed, it's overwhelming, what do they mean and what the F are all these acronyms?!?  So here is my response, I'm not a doctor, I'm a patient, going through this mess just like you.  I've tried to educate myself and this is soley my opinion on what is of most importance to monitor and why.  That said, I do maintain a list of all my results (see earlier post on tracking bloodwork).  These are my thoughts:
First, I think the disease propogates differently for everyone.  I never had a plasmacytoma/tumor.  The numbers I've watched and why:

1) protein level - low=6, high=8.3 - i was originally diagnosed after a high protein level (9.2 and  9.8) and they sent me to the Onc.  

2) the protein level is high due to the Ig numbers: IgG, IgA and IgM - each individual proteins that help protect your body from infections.  
  IgG should be between 700-1600
  IgA should be between 70-400
  IgM should be between 40-230
I was IgA and when first diagnosed I was in the 2000 range for IgA and had 20-40% plasma cell penetration in the bone marrow.  I started RVD and I was 85% plasma cell penetration and my IgA numbers were over 4400.  

3) FLC (free light chains) - These are your Kappa/Lambda numbers.
  Kappa - 3.3-19.4
  Lambda - 5.71-26.3
  Kappa/Lambda ratio - .26-1.65 - i think this may be the most important as it measures the kappa agains the lambda, to make sure you have the correct balance.  However, Lambda is a slight trigger on my version of the disease but not extremely prevalent. 

4) M-Spike - you don't want one!  Prior to my RVD my m-spike% was in the high 30's.  Not sure if I can appropriately explain m-spike but I agree with an earlier comment, it was the only tool for diagnosis originally. 

5) calcium - you don't want a high calcium number (should be between 8.5-11) as that could potentially indicate that the bone is being compromised.  If the bone marrow penetration is complete then the rogue proteins start at the bones, causing litic lesions (small hole sin the bone similar to a termite in wood).  These litic lesions then release calcium into the blood stream.  This also releases the antibodies into the bloodstream (i.e., proteins into the bloodstream) which then affect the kidneys.

6) Platelets - above 150 is your target - if below (seriously below) you will need transfusions.

7) WBC (white blood cells) - this is what helps you fight incoming diseases (colds, infections, etc.)  you want this number close to 4.5 but you'll always fluctuate between 3 and 6ish. 

8) Hemoglobin - your red cell production - you want it close to 13.9 but taking Rev inhibits the production.  Prior to my RVD I was 11.1-12.1 range.  After my chemo I was in the 13.1 to 14.6 range.

9) Neutrophils - i can't describe these but know they watch (also indicates your ability to fight off cold, cough, etc.)  if you have a cold you'll see big fluctuations here (along with monocytes, basophils, etc.) 

Question B) "Do you do a special dient, not to lose weight (which I so need to do since on steroids) but a cancer prevention diet?" (Nancy's question) Now my answer wasn't really directed to the diet but more to the drugs you're getting and how I've best been able to counteract the side affects from these drugs.

I'm on a neutropenic diet now - avoid all  potential food diseases. I can have hot dogs and American cheese but need to avoid blue cheese and thin skinned fruits, etc. but that's due to my transplant and immunity issues. 

I've not believed in the cancer diets but I've never really tried to live by it either. I've just tried to eat healthy and change when my body said change. I would eat salads for two weeks and then not have one for two months!  

But things that may be of use to you!!
- fish oil (1k) - found this very useful in keeping things regular when on the steroids. Usually took either in concert w the steroid or on the next day after steroid. 

- gas x extra strength - essential with steroid use!  Gas and bloating sucked. Search my blog for "mr michaelson" and you'll get a laugh.

- b vitamin complex (100 or 200) - useful to give you a bit of a boost. Not a caffeine type boost more mental awareness and energy. Vitamin water always helped me like that as its a big b vitamin boost. 

- gas and digestion are the most difficult. Salads may be high in fibre but really bring a lot of air into the system when you eat. Oatmeal has a lot of fibre without the air intake and can result in what you need without the sound effects ;). Think about what you're eating and try things separately so you can identify things that make you uncomfortable. 

- on the steroids - have something to do. I was fine at night if I fell asleep by 11p. But if I woke up after that I wasn't back asleep till after 3a.  Find books for your kindle. Find projects (art, music, creative projects are good for the mind!)

- velcade causes peripheral neuropathy. My blog has a bit if an explanation under velcade ( drugs and what to expect). PN can be bad - look for signs: burning sensation, itching in fingers or palms, pain in feet or heel. Want to tell the doc early. They had me on Lyrica and Nortriptylene which didn't do much to help but I couldn't do without. 

- I was (and still am) a big believer in massage and other similar therapies. I was in Asia for 3 years where massages were cheap and easy to find. The intention of a massage is not just relaxation but clearing if toxins and roadblocks within your body. If you did this once a week you found yourself feeling in "balance". Acupuncture is another opportunity - balance you chi!

- Revlimid - if you start feeling itchy or get red marks in your eye sockets don't worry, it's temporary and Benadryl or similar will relieve (and knock you out!). 

That's all I can think of for right now and I know it's a lot!  ;). Also, tell your hubby that the steroids will put you over the top (the nurse told me I will "kick the cat"). You can become a supreme bitch!  And you will have a hair line trigger. You won't mean it but make sure he's aware!  ;)

And now for the prize!  Here I am, 20 days after the Melphalan, photo compliments of the Pano iPhone app which is usually used for panoramic shots but this is still a cool effect! :)  I had my wife shave my head yesterday as the small spikes were killing me whenever I moved around on my pillow.  So here's the pic!  

SCT Day 19 - almost kicked the cat!

And I'm not even on Dex!

I was coming to write a post about how I slept till 0630 today!  Quite excited.  I re-heated some coffee from yday and reheated the leftover pancakes I made yesterday and walked over, in the dark, to my iMac to sit down and post!

And then I tripped over the f'ing cat, spilled coffee on the desk, my daughters iTouch and somehow got syrup on the desk next to the keyboard.

Now my wife is up, she fed the cats for me, and my pancakes taste like sit!  But I did sleep till 0630.  I woke up at 1230, 0200 and 0500 and didn't think I'd get back at 0500 but did till 0630!

Nothing else to report except - IF YOU KNOW ANYONE IN DALLAS - THE PGHL DALLAS EVENT IS TODAY, 1500 (CST), AT THE LONDONER PUB ON GREENVILLE AVE.  My buddy from Hong Kong, Craig Storey, is going to shave down his head for The MMRF!

Please pass this along to ANYONE you know in Dallas!  Make sure they see Craig, say hi and tell him Bill sent you!

cheers...bill

SCT Day 16 - pictures from the ward!

Nothing of importance to update here.  Just happened to run across a bunch of pictures that were on my phone or were taken by my brother and I thought I would post them!




First - sunrise out my window - looked cooler when I was lying in bed, of course, that could have been the drugs.  I didn't move far to take the picture, as you can tell here!




Next, visitors from work!  Complete with the "I Love You" balloon! :)  I think the gloves and mask go well with the suits! :)

My Aunt, in Sedona, AZ, sent me to very rusty bells that were taken off a christmas wreath there in AZ.  The difference is it's a desert out there, not many pine wreaths, so they make them out of barb wire.  It lets them reuse them each year!

Anyways, she said she knew I'd come out of this with bells on - well - there it is - I'm coming out with the bells on!  That one's for you Aunt Dot! :)











This is the pick line - the actual pick line that was in me!  My brother took the picture (at my request and the nurse's disgust) and apparently used some really cool app to point out where it went in and how much went down my jugular!








The blue part (at the arrow) you see above is what was on my neck.  If you look at the big 'boo boo' at the bottom, that's where the pic line went in.  The four marks above it are where the stitches were used, on the blue part, to keep the pick line stationary on my neck.  I took this picture to show the doc as you need to be cautious on this part to make sure you don't get an infection.











This is a picture from Valentine's Day, 14 Feb, 2013.  I got the Melphalan on 1/28 so this is 18 days since then.  You can see that I still have some hair but it doesn't feel real.  It feels like a bunch of spines and when I wear a hat or lay on the pillow it hurts as they stab your head.  If I rub my hand across the head I will have a handful of little pieces of hair.  We'll see what tomorrow's shower brings but I may be a bit early on the complete, baby's butt bald estimate of Friday.

So long for now!  Oh, and PGHL (promoting global hair loss) passed the $53,500 mark!  All funds raised and COLLECTED for the Multiple Myeloma Research Foundation!  Still more money to come in and the Dallas event had a date change - it's now 17 February, at the Londoner Pub, 3pm.  If interested send me a message or leave a comment here!

cheers,  bill

Quick update

ImmunoFix results. I'm IG A (that's what is usually high). All normal except for IG M which is only a little low. I didn't get FLC yet but will be watching.

More updates later.

2/13/13 Immunofix Panel-Serum
Component Results
Value Std Range
IG G QUANT 522 700-1,600
IG A QUANT 170 70-400
IG M QUANT 22 40-230

SCT Day 15 - Update

Today is Day 15 and I'm up again at 0530.  I slept better but was up at 0330 for a bathroom break and where I did probably sleep for about an hour by 0530 I decided to get up, make coffee and see how I feel.  The worst thing is a small, miserable headache, more in the back of my head which could be dehydration (can't drink while I sleep unless I have that wonderful IV again!) or heat from blankets or simply oversleeping.  I had the same yesterday but got over it quickly and was strong all day yesterday. I didn't start crashing till about 2130 but still stayed up to watch TV in bed till 2300.

Yesterday I visited the doctor and I have to apologize for what looked to be very professional charts built for my bloodwork but only go to prove I'm still at grade school level charting!  The 'normal-low' for the white blood cell count is 4.5, the 'normal-high' is 11.  My chart showed 11 as the normal low, my mistake.  I bring this up as my WBC counts yday were 10!  That's great.  However, my WBC counts on Sunday, when I left the hospital were 12.7!  I was abnormally high on my WBC counts!!  Anyways, on the numbers front: WBC @ 10 (normal); Hemoglobin @ 12.9 (slightly below normal); Platelets @ 102 (150 is normal low).  All of this is good and doc was impressed.  I go back from bloodwork in one month, go back for more bloodwork and a doctor's visit in two months.  Finally, in three months I get a visit, bloodwork and a bone marrow biopsy (that will be five!)

I should get Immunofixation counts back today (I'll have to bug them to get them) but that will tell me my IgA and free light chain levels.  These should be normal but I didn't ask the doctor about what to expect.  I also forgot to ask about the smell and about NancyN's question - it took so long for him to get over to me that I just wasn't prepared when he finally showed up!  I went from my docs appointment (102/Madison) to 11 Center (100/Madison) and visited some of the nurses and brought them MMRF bracelets.  I got in trouble on my final day.  My nurse that day was wearing an orange bracelet.  I asked her what it was for and she explained but I then said well you need one of these and gave her my MMRF bracelet.  I then caught holy hell from the other nurses asking why I hadn't given THEM one?!?  So I brought a few back and for those nurses reading - there should be enough but I can get more - don't get me in any more trouble!  And I expect a picture of you all with your BLING! :)

I will say, on the physical exertion level, I did the most yesterday and I can feel it.  My knee felt out of sorts and I used some Olbos Oil (the magic rub from Switzerland!) before I went to bed and it feels better today.  But my calves and shins just feel tight and cramped.  I'll try to do some stretching today and loosen things up.  For now, it's 0610 and I should start getting the kids breakfast ready.  I'm not noticing the smell yet today but it's early! :)

Thanks for reading!   Bill

SCT Day 14 - It's The Smell!

Yesterday was uneventful.  I did make a pasta sauce and meatballs that were apparently VERY good.  However, I still can't seem to "taste" much - it all tastes the same - metallic and with an underlying smell that reminds me of the hospital.  I'm assuming it's from the transplant and that smell is carrying on.  I'm just not sure for how long that smell will carry on!  They say it's supposed to smell like 'garlic' and the docs made mention on day 1 (day after transplant) that they smelled it coming into the room.  I don't know what it was but i'm guessing the smell I'm smelling is what they smelled.

Luckily nobody else seems to smell it!  On to other items, I am still Promoting Global Hair Loss and will be able to prove it more effectively in the next day or so.  I clipped my head to about a 2 setting yesterday and broke out my old battery powered Braun shaver  to clean up my face.  But I noticed last night that if I scrub my head a bit, there are a bunch of hairs falling to the floor!  This shot is BEFORE my shower.  I will scrub and see if I can get an appropriate AFTER shot and see if we can notice the difference.  I am guessing by Friday I'll be 'skin' bald!  Showed Dilyn today - asked him to hold out his hands, then I scrubbed my head - he was, "Ewww..." and brushed off his hands.  But he had a smile on his face.  As long as we can keep this stuff fun and not worrisome then that's the direction I want to take.

Going to post this now and will update for the AFTER shot! :)

See if you can tell the difference -
You can't see immediately but if you look closely it's starting to get patchy.  No matter how many times I scrubbed, there was always hair on my hands.  I would condition, scrub, rinse - hair in the tub, on the curtain, on my hands.  I'd relax for a bit and then repeat - and the same occurred.  So where it's falling out, it really needs to be "worked".  I'm not going to clip it down, I'll deal with it till it's gone and then wait the 3-6 months to get something back! :)

I do believe it's better to get it this short before it starts to fall - it's less distressing than if big clumps of long hair were coming out.  I realize that for most women, this would be a very difficult moment in time.  As a gent, this is easy, as I'm Promoting Global Hair Loss, even easier.  As a lady, to go down to Sinead length, well, that's a big step and you have to be pretty ballsy to pull it off.  My only advice is, be ballsy - for the first time in your life you have the opportunity to tell the world to f-off!  At this moment it IS all about you - and people should pay attention and listen!  Everyone has their issues they have to deal with - this is yours and nine times out of ten it's bigger than anyone else's!  I had a number of women that pinged me on Facebook re; what they went through and how tough it was to be bald.  And I completely understand - I do NOT want to make light of what you went through.  I'm just saying, as tough as it is, don't let the world dictate what you should or should not do in that situation.  If you want a wig, get one - better - get four or five and make them crazy!  Have fun with it.  As a guy, I know most wont worry about it, but again, don't be afraid of it - flaunt it!

I had an idea and I'm looking for anyone that has any good headshots of when they were bald!  Something interesting; your head where the sunset is to get that cool halo effect, someone rubbing your head for luck, anyone with head-paintings! :)  If any of you are going through this right now, what can you do to make it cool and interesting.  I'm going to find some face paint and have my kids make their own pictures!  If I can get a marker that will REALLY wash off, even better!  If I can get a number of pictures of Bald Heads Gone Wild, I will put together a series of photos, into a calendar and see if The MMRF, or, for those in the UK, Myeloma UK, would be willing to sell them to raise funds.  Anyone contributing would have the ability to approve what's created prior to distribution and I will TRY to get you your preferred month but I will not guarantee anything!  Please remember, this is me doing this on my Mac!  I'm not claiming to be professional in any fashion, but I think I can put something fun together.  If you're going to do a picture and think you can customize it for a month (Feb VDay, Dec Xmas, etc.) then go for it!

Again, just want to have some fun with this and we could put together a 2014 calendar!  Now if I can just get rid of this SMELL!  I just came out of the shower, scrubbed with two different soap, put on deodorant and baby powder and I still smell it!  God help me!!!!

SCT Day 13 - SLOW IT DOWN!

I was discharged yesterday (Sunday) afternoon.  I was given my instructions (what not to eat, meds I had to take, etc.)  I said my goodbyes and headed home in a taxi.  My kids had gone to a neighbors house to play and my wife and I were going to pick them up, as a surprise, in a short while.  The kids had made me a great coming home sign, complete with lights.  Lil convinced them to hang it now for when I get home (they had no idea I would be home that day.)  We then walked to Starbucks to get coffee beans as we were out and would head by the neighbor’s house after to pick up the kids.

Pause

I am on the younger side of the patients visiting Mt Sinai for this type of treatment.  I’m also a bit more fit than the others that are there under the same circumstance.  I’m not tooting my own horn as the baseline is really not difficult to out perform!  But therein lies the issue.  I don’t believe the doctor’s or nurses have a discussion regarding physical exertion due to the sheer fact that most patients, upon departure, move from a hospital bed to a personal bed, or couch and then don’t do much else.  Physical activity was not their strong point. 

I had my eyes opened quite large yesterday, to the point where I felt bad surprising the kids as I truly looked like shit!  Hammered shit!  I entered the hospital on 28 January and until yesterday, I had walked around the hospital ward approximately 4 times – total.  One day I did touch my toes and balancing on one foot – one day.  From 28 January till 10 February, I had become the literal vegetable.  Still, compared to others in the hospital I was the picture of vim and vigor – and walking around the block and then meeting the kids had me doubled over, almost wheezing. 

For the first time in my life, I was VERY scared that I was about to die.  I knew I wouldn’t but I was still scared!  It never dawned on me how dilapidated I would become.  This is the map of where I walked.  Literally a block and a half.  And by the time we got up to the neighbor's apartment I just started feeling short of breath and coughing - while wearing the damn mask!  

Of course, the kids (Dilyn) were scared and Lil was scared.  I just told them I needed to get home.  But literally, I was hands on knees on the corner of 22^nd/2^nd Avenue and while going up the elevator.  I sat down and watched the rugby 7s and just relaxed.  Lil wanted to call someone and I said no – I was going to relax and I’m going to be fine and I’m NOT going back to that hell hole (hospital, sorry).  Later I had a bit of a temperature, which is something they warned about.  The in-ear thermometer had me at 100 and change.  The in-mouth had me at 98.7, 99.6 and 99.9 over three tries.  Unless I was close to 101 I wasn’t going to call anyone and opted to go to bed.

In the middle of the night my temperature was down and thus far this morning and today my temperature has been fine.  I am finding that any bit of exertion is taxing.  If you’re a runner then you’ll understand the feeling.  When you really push yourself and there’s a burning in the back of your throat that turns to an itch, forcing you to cough – that’s the feeling I get.  This coughing of course scares Lil and she immediately thinks I’ve got something from the kids.

Bottom line, I’m good – sleeping in my own bed was unbelievable.  I didn’t sleep straight through as I had potty breaks and just needed to get up and move around but I was in bed by 9p last night and didn’t get out till about 630a.  I did take a nap and then a long shower and cleaned up my shaven head and messy beard!  Time for me to take a walk, all the way down the block and back – that’s all!  If I do that every day for a week I’ll hopefully be back in normal ‘shape’!  It’s great to be home – now I need to focus on staying there! 

SCT Day 12 - Going Home!

So I got clearance to head home today!  This hasn't been told to the kids so for those that know them please don't say anything so I can surprise them tonight.  My numbers have come back but they've not yet printed me anything (asked three time thus far!)  Bottom line, they're letting me go!  Here's what I have to do:

- Platelet transfusion - my platelets went up from 29 to 37 but normal is 150.  As a precautionary effort they're going to give me one more bag of platelets.  I don't think it will be an issue but I understand their precautions.


- Neupogen - they're also going to give me a shot of Neupogen (injection in the belly fat - easy to find on me!).  This is to help boost the WBC count which jumped to 12 today!  They're concerned it may drop again - me, I don't think that's happening but they're being cautious so I won't bitch!

- Remove The Tube! - once all this is done they will remove the tube - the port that's been in me since day 1!  I doubt they'll take a picture of the tube that's removed but I'll ask - nothing like a gory pic!

Now i need to be cautious at home and make sure I keep myself safe.  However, I'll be home, in my own bed and with my kids!  I can't wait to get there!

SCT Day 10 Update

Today is Day 10 - this is the day when they expect my numbers will start returning to normal.  And I do feel better today but a little cloudy due to the "sleeping assistance" I asked for last night!  

My insides are still having issues processing things and by the end of last night I was feeling like it had to happen but it just wouldn't.  The big D was there, not to a large amount (volume), but enough to be bothersome and often enough to make things tender.  But when finished, and you returned to bed, your stomach started growling and you felt like you had to go back and do it all over again.  At 02:30 I finally decided it was enough and asked for help.  One Imodium and two 5mg OcyCodone and I started reading my book awaiting that moment when I'd finally pass out.  Unfortunately, it took a few hours for that to occur and by that time we needed to draw blood and do those early morning checks that we do.  From that point forward I was basically a vegetable.  The docs came in at 07:45 this morning and I was still out cold!

I felt good this morning, though a bit cloudy and have passed the day NOT watching Swamp People.  I tried to take a nap to make up for what I missed last night but that didn't really work (the two lattes today probably didn't help!)  Lil was kind enough to bring me my clippers so I was at least able to take down the whiskers that had grown with abandon for the past 12 days.  I can't use a razor as my platelets are still low (but much higher than yesterday) but i'm fine with at least being this short.  

On the numbers front, my white blood cell count has moved up to .5 (from .2) and my target there is 1.  Platelet counts moved to 29 (from 9) which is very good - the extra platelets yesterday must have helped!  I haven't yet gotten my neutrophils back (for some reason those are taking extra long today! My target there is .5 and I was unregistered yday so I have no idea what to expect when I get them.  

That is all for today, the snow is coming and coming hard (from my view of the projects on 101st/Madison).  Everyone stay warm and safe - i'm stuck here so don't worry about me! :)

SCT Day 9 - update

It's Day 9 and my numbers are doing what was expected.  My platelets dropped more than expected and I ended up getting a platelet transfusion today.  We'll see what the numbers are tomorrow and how the transfusion helped.  The doc are very impressed with my progress thus far and we have started talking about discharge.  I need to have a certain level on the white blood cell count as well as my neutrophils count but if I reach those numbers then I could be getting out very soon.  I'll still need to be cautious at home, will most likely need to give myself neupogen and come in for check ups, etc.  Right now my biggest concern is getting my insides back in order as that's been a literal pain in the ass for 2 days now!

So, I will apologize for not having a more detailed update today but getting the platelets put me in a benadryl sleep.  And since then I've been watching Swamp People for going on seven hours now! :)

SCT Day8 - fact of life

Never, EVER, take a good BM for granted.

SCT Day 8 - Achieving Balance!

When you get on a seesaw there needs to be two - that's just the laws of physics.  As a kid that was readily apparent and your ability to outweigh and thus control (once you pass that ripe old age of 7 or 8) the seesaw and wreak havoc on your buddy was the advantage you sought.  But prior to that, when bouncing up and down, asynchronously, continuously, with purpose was truly enjoyable, without balance it just wouldn't work.  Now we didn't choose our friends based upon their weight in comparison to yours but if the two of you were within 3-5 pounds then riding a seesaw was great fun and could last for hours.

Chinese philosophy also talks of balance, Yin and Yang working together and when out of balance your Chi becomes unstable leading to issues that you can't seem to figure out.  You may not realize it but things usually get better once you achieve that sense of balance.  That balance could be work and home; kids and wife; fun and religion (saturday night vs sunday morning!)  Balance is balance and it's not more recognized that here in the hospital.  And like any good mathematician, the focus is on the numbers.  Like any experiment there are very specific, defined parameters - known and controlled.  And rarely is there something that upsets the seesaw.  Unless, of course, you're Bill, aka LiquidMan, bladder boy, whatever!

If you're on an IV drip then there is a very specific amount of liquid being placed into your system throughout the day and evening.  Your body will process and get rid of what it doesn't use.  And in the case of a saline drip, you're keeping hydrated but not necessarily holding on to that water.  So if I'm getting 100ml/hour then I've geting 2400 ml per day.  Initially that was in the 175ml/hour level.  Bottom line, 3k in there should be 3k out.

I had 10k out!  Yes, 10k out!

I threw the control - EXTERNAL FACTORS - screwing the equations, messing with the doctor's heads.  At that point I needed to introduce them to LiquidMan!  At work, on a normal day, I will drink a minimum of 4 liters of water.   I have four bottles at my desk that I maintain and refill.  At home I will go through at least one other bottle, if not two.  that's 6 liters of water in a day.  Arriving here, I knew this was going to be a wreck on my system so I stocked up - 3 bottles of gatorade in the fist two days.  My brother brought 12 liters of Smart Water, I brought four.  My brother has restocked me twice now.  He's done the math as to what I've been through - I just know it's a lot.  And it threw the doctors off course for a short while.  At first they thought I might be stressing my kidneys, pushing through that much liquid.  However, I pointed out that this is a normal occurrence.  They finally bought into my thought process and agreed this is fine as long as my electrolytes stay up.  Another reason why i'm doing the SmartWater (added electrolytes).

This process makes everything taste bad, even water, but I've kept at it and believe it's not a bad thing.  For those monitoring me as they (or loved ones) get ready for this, please just realize it is to each their own.  I drink a lot of water to start with.  I believe flushing the system is important and helps overall.  I think the electrolytes and important as well and I just cant do the gatorade any longer.  But back to balance...

Once they realized the discrepancy for my input/output ratio they cut back on the IV which helped relieve the number of times I visited the restroom.  I did ask them to increase the amount a little as I found the hydration helped, somewhat, with dry mouth and everything else.  But again, I digress, it's the balance that I came to discuss.  Hopefully my point is clear - they monitor the ins and outs so that they can assume that 'balance' exists, the Yin/Yang is in equilibrium.  Unfortunately, you monitor both the ins and the outs and that's where things get nasty!  Especially when one of the side effects of the chemo kick in and you have to "track" the output!

There has got to be a better way! :)

SCT Day 8 - quick update

Just a quick update with more info later.  Day8 and all seems fine.  Unfortunately I was dealing with the big "d" last night but other than that all feels good.  More details later.

SCT - Your Numbers

(updated as charts weren't coming through)
Ok - I definitely feel like I've rounded a corner and am feeling better.  I have the ability to focus and I can actually put effort into typing things as well as inputting my daily numbers to I can be monitoring how I'm doing.  As a recap, the goal coming into this procedure was to kill my existing infrastructure (white blood cells, etc.) and then replace with a version that had been through my RVD cocktail a few years back.  So I wanted to give everyone an idea of what it meant for your numbers to drop.  This is a totally non-medical description and will be fraut with mis-speaks - but hopefully it will get the point across.

First, you have your WBC (white blood cells) the parts of your body that fight diseases.  These 'proteins' are what diagnose you as having MM.  In my case I'm IgA on the protein and Lambda on the free light chain.  So my IgA goes rampant and then dwarfs the other two (IgG and IgM).  If I kill all of these off then who's watching the store?  When I cut my finger or if I get a nasal infection?  After the RVD my cells were beaten back into submission and then the Cytoxan killed off most of the bad stuff and then it was harvested and put in a freezer.  The freezing process also is bad for the "bad stuff".  So the hope is that what's put back is back in 'normal' operating procedure and wont run rampant again.

The risk you run is that while all this is being done the chemo is affecting other aspects of your body and could cause other issues.  In addition to your ability to fight infections and bacteria your ability to create blood cells, and platelets could be compromised.  When that occurs you need to a level that is of concern you need to have a transfusion.  So I wanted show everyone what it means with respect to your numbers.

This chart shows you my WBC numbers with green being the normal 'hi' and red being the normal 'low' (and the value of normal 'low').  If you're below 11 then you have an immunity issue and should be concerned.  This is why the door of my room states mask and gloves must be worn.

My Platelets started in normal but have dropped off significantly.  Luckily, 35 isn't a level of concern yet (I believe our real "low" will be 10) and if I can keep that number over the next few days that will be good.  If you had a number below 150 in a normal situation then you're at risk of being able to repair yourself.

Hemoglobin is your red blood cell production facility.  If this were to drop then the need for a blood transfusion could exist.  Luckily things look like i'm keeping up there with where I need to be.  But as you can tell, my numbers are still dropping and so I need to be cautious about what i'm exposed to as well as the bacteria and things my own body produces.

I've not gone into detail on this front but part of my daily regimen is a product called Nystatin, an anti-fungal product.  This needs to be used 4-5 times per day in a variety of manners: mouth wash, swallow; an ointment for the nether regions (to control what gets created there); a powder for the nether regions and under arms (where potential fungal growth could occur.  So it's not just people coming in but you need to watch what you create as well!

These items I hope everyone finds of value.  I hope it's a way of thinking of what you need to watch and what you need to be cautious of when you're in this position.  However, it's also important, and brings me back to one of my original rants and raves, it's important to KNOW where you stand - even when you're healthy.  I was diagnosed with this disease because i had an elevated protein level.  This was a regular doctor's visit and bloodwork.  Nothing special - if you've not been, if your friend hasn't been, if anyone you know HAS NOT BEEN to the doctor in the last two years then take them yourself!

Thanks for reading!

SCT "MUST KNOWS"

It's Day 7 (aka 9 days in hospital. Today my breakfast arrived and looked more appetizing than it ever has. Then I saw it was a bagel and jelly and said I didn't order that. They realized it was for the next room and brought in mine, on styrofoam wrapped in plastic and smelling all the same. I asked why one looks like room service and the other looks like mine and found out the lady next to me is NOT on the Kosher diet.

I asked that they change that now - now that I've been here 9 days! Aaasrrrrggghhhhh!

SCT Day 6 - too tired to update?

Apologies to the avid bloggers that aren't also following PGHL and my regular fbook page. Today was Day 6 and it was pretty uneventful. My numbers continued to drop and I was given neupogen to help maintain some of the systems. Everything seems stable and I am hoping we won't need blood or platelets. I should be moving forwards now and am hoping tomorrow is a bit better. Till then I'm still not eating much and am trying to keep at the anti nausea meds! Here's to an uneventful evening!

SCT Day 5 - numbers defn down

I have been in bed since about 630 last night. I am wiped out and finally got out of bed to just move. I expect today to be a lot of nothing - all day long!

SCT Day4 RUGBY!!!

My day just got better, thanks to BBC America - the Rugby Six Nations is on!  Eng/Sco - i'm not choosing a side, just hoping for a good game and really pissed I don't have a proper beverage within this adjustable bed!

SCT Day 4 - numbers dropping

Boredom has struck and my numbers are dropping so I'm beat.  WBC finally dropped down to 3.2 (from an avg of 6.2) and platelets continue to drop down to 87.  For most of you these numbers dont mean anything, for me, they mean that it's working.  I expect to be lowest tomorrow or Monday (day 5 or 6) and then its uphill from there.  Only risk, being low on these counts, is immunity so need to be cautious, wear mask, etc.   But at least we're on schedule now.  And now, I'm going to crawl back in bed and crash!

SCT - day3 - prune juice ordered

Nuff said!

SCT - Day 3 0646

Nice rest last night. Going back for more. Believe I also need more prune juice - but that will wait! ;)

SCT mid-stream Summary

When I got on this pony I knew I would be dealing with Melphalan and with getting my own stem cells back.  I knew there would be some other things but I was NOT prepared for the plethora of drugs that have come my way.

Melphalan - that's the chemo that kills everything.  I arrive on Monday and get my port put in (by three lovely female doctors that rock me in and out of there in minutes).  Once the port is put in we can do the Melphalan.  But the Melphalan also needs a prep-drip so in addition to Saline there's...
Decadron - the dreaded steroid that will make you "kick the cat" re-enters my life along with...
Benadryl - to prevent potential allergic reactions
Ativan - a sedative - and also fun if you want to watch pictures on the ceiling when there really aren't any pictures!

This all happens on Monday evening and I need to wait 18 hours before I can have the transplant of my stem cells.  So sometime late morning on Tuesday (my Day 0, aka Birthday) they come in w/ the big red squirt gun.  this is one of three tubes that have been thawed (and I can't figure out how but they originally were yellowish in color!)  Again, we get pre-transplant prep: Dec, Ben, Ativan plus...
Zolfran - anti fungal
Accyclivir - anti viral
Levaquin - anti biotic and....
OxyCodone - pain relief, really powerful pain relief!

And then the actual transplant begins.  This is a "push" where the doc is connected to your IV w/ this syringe and they slowly push the plunger thus pushing this straight down into your veins.  And you feel it - it's like a black pepper irritation in the back of your throat.  Sort of a tickle that will make you cough but I placed it as pepper.  This feeling is directly relevant to the speed with which the doctor is pushing the plunger.  I tried a popsicle which seemed to deaden the peppery feel.   But all of this was apparently providing great entertainment for the NP and the RN as she walked out of the room asking the RN, how much Ativan did you give him?  He's seeing things on the ceiling while sucking on a popsicle....

And I was - there was a daddy long legs (mosquito hawk) on the ceiling that had long flowing antennae like the cockroach from WALL-ee and he was making cocoons and moving around the whole time while the NP was asking the other nurses to see if they could see anything.  

This process took place in two installments and i had the same fun in the second.  Needless to say, the Ativan is on the charts but not given going forward.  The OxyCodone was the other item to help make things easier.  This was really to relieve the pain in the port that was put in since the local had worn off. This also helped me make it through the night.  Lil's steak couple with corn and carrots (which can't really be miserable!) rounded out my night.

But the next day (Day 1) I felt like I'd been hit by a Mack Truck.  I feel like the list of "preservatives", etc that were mentioned above fully explains my feelings.  I've finally started eating something today but I still don't have a real taste for anything.  But at least the prune juice worked - that was a major accomplishment!

Day 2 - 0441

Feeling better today. Getting decadron just before bedtime isn't the best. But we offset with OxyC which let me crash.

Still couldn't sleep more than on or two hours at a time. Going to try and catch a few more hours now and be more productive later!


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Day1 0835

Today is a day of sleep. The docs say I'm doing great and I "smell" like I just got new stem cells!

Not much of an appetite. Had a milk and two bites of banana and that is it. Sippin some smart water but going back to sleep!

Just got told that if I want to get put and walk around then id better do so today or tomorrow as once I get the pink sign on my door I'm not allowed out!

But right now - sleep!



- Posted using BlogPress from my iPhone