So after you've had some of the symptoms that I mentioned before in the previous post, you would likely go see a doctor (a think this step is probably the most important and I know people think its obvious but youd be suprised with the power of denial) In my case my wife ( who was my girlfriend at the time) asked me to go see a doctor as soon as i had night sweats and hives but i didnt go....to be honest I was too nervous to deal with it. So if you have these symptoms PLEASE go to the doctor... it will really make a difference with how bad/long your treatment will be. I didnt go see a doctor until it was almost too late....it was roughly 4 months after i started having symptoms so when i was admitted I was considered extremely high risk. I was lucky to be alive.
Anyway so when you go see your doctor this is usually what will happen:
first your doc will order some blood work...The family doctor that I went and saw ( I think i was the first person he'd ever come across with such a high WBC) was soo nervous about my results that when he came into the room you could tell it was bad news and that it was difficult for him to say it... he was stuttering and couldn't complete a sentence... poor guy... he had taken soo long (40 min) to come into the room to tell us. We were sitting there and Shahrzad saw the nurse put my file in a plastic sleeve on the door....and after we couldnt take waiting any longer she opened it and saw " Leukemia" written on the chart. We knew before he came in so i guess he was lucky that he didnt have to actually "break" the news to us...
Anyway what they are looking for from the blood work is:
- your RBC....red blood cell count (these are the cells that transport oxygen, which is why you'd be feeling tired a lot if you had leukemia...so no oxygen= tired)
-your platelet count (these cells in your blood are responsible for clotting)...so with leukemia you bruise easily because these cells will be low
- your white blood count (these cells fight disease)
-and neutrophils (they are the most abundant type of white blood cell)...this particular test is call a CBC (complete blood count), a.k.a blood panel.
So with leukemia the above blood test will show an abnormally large amount of white blood cells...A normal white blood cell count is between: 4,500 to 10,000. When I was diagnosed my WBC was 63,000. This is usually a huge sign that you have leukemia but it doesn't always mean that. To confirm leukemia they have to do a bone marrow biopsy.
Alot of shows have shown people getting bone marrow biopsies and usually the person is screaming in pain. Thats not how it is in real life.....dont get me wrong...it still hurts like hell but ive never screamed or seen anyone else do that. Anyway this is what happens when your getting a bone marrow biopsy:
-depending on what the doctor is comfortable with you will either lie on your side or on your stomach....personally when i'm on my stomach its not as painful so maybe ask your doc to do it that way if he's not picky.
-the procedure is basically the doc inserting a hollowed out needle into your hip bone. Then a smaller tool is inserted into that needle to retreive the marrow and sometimes a piece of bone.
-so first they will disinfect the area and give you a numbing injection. Its really important to relax...if im not relaxed sometimes ill flinch just when they're disinfecting so if you flinch aknowldge that you're freaking out and try calm down. But i'm not going to lie...the first pinch, when the needle enters is pretty painful and then while they push in the numbing agent there are a series of more painful pinches that follow. You basically feel the numbing happening.
This pain only lasts for a few seconds though.
-Once the area is numb, they push a needle into your hip bone. Its freaky and painful but its momentary so try to think about something else...sometimes that works for me and other times not so much. So after inserting the hollow needle they then take a sample of bone marrow....the only way i can explain this pain is that it feels more like pressure. During this time dont get freaked out that you might hear them scraping the bone...you really have to be prepared and know that this isnt going to be pleasant so try to just ride it out.
Now I know this all sounds scary and intimidating...truthfully the reality of it is that it's not as bad as the tv shows and movies make it(and as i've made it sound.. hahaha)... I have seen some episodes of House where they have 'preformed' a bone marrow biospy and the person was screaming... it's not that bad... My first biopsy, I asked how bad is it going to be and the doctor reluctantly said it's like a horse kicking you... so that made me nervous enough... I don't know if it was the anticipation of horrendous pain or what... but I laughed through it... The doctor was moving me back and forth to get some shavings and I couldnt help thinking about how ridiculous it all was....so I started giggling to myself... and then the nurses were shocked cause they had never had anyone react that way before..haha they kept asking me : "nima?! are you ok?" and my wife who was facing me said "ya.. don't worry about it, he's just laughing"... granted they gave me some morphine before and a very small dose of adavan, but I don't think they had much of an effect at the time...
Anyway the biopsy that I got when I relapsed was much different. It was just in the clinic and my doctor came in and said lie down on your stomach and lets do this! haha I didn't know what he was talking about cause I thought I was coming in for a chat and usually they inform you ahead of time if your getting a biopsy... so I didnt have time to be nervous about it.. I lied down no morphine no adavan.. just numbing... This doc was in and out in less than 5 mins... I was shocked and it hurt less than any biopsy ive had... apparently my doctor had done it soo much that "he was a pro"...so try to find a ninja doc if you can ....not all my experience have been great though, for instance the one i'm getting in the photo hurt....a lot.
I think I have had 5 or 6 of them in total... usually if you don't relapse you should only have 2. One to diagnose you, and one to confirm you are in remission. The results of the biopsy tell what kind of leukemia you might have.
There are 2 main types, 'chronic' and 'acute'. 'Chronic' develops over time and 'acute' develops suddenly... usually within a month. There are more specific varieties under each type which I won't bother getting into.
Ok so once doctors confirm your diagnosis, they usually do a lumbar puncture which is a procedure where they check your spinal fluid to see if cancer cell have reached the CNS (central nervous system). The reason why they check there is because cancer cells can cross over the blood brain barrier and get into your spinal fluid....usually thats were people relapse...its a sanctuary site for the cancer cells since chemo ( if its not injected directly into the spine) cant reach there.....I relapsed in my spinal fluid so my bloodwork didnt show any signs of leukemia....thats why now my protocol calls for LOTS of Lumbar punctures to check if the cancer has come back and just so they dont have to "poke me twice" they inject some chemo. I won't get into the details of an LP cause they are pretty similar to a biopsy. But you can see what it looks like below. If you look carefully you can see how they catch the liquid coming out.
Here are some tips to make the experience easier for a bone marrow biopsy and an LP:
- wear comfortable clothing, but don't layer too much... you sweat from crouching and being tense...so just do everything you can to be comfortable.
- 30 mins before the procedure take whatever medication you think would be helpful (this comes with experience obviously.. the only reason i know what works for me and what doesn't is because of how many i've had. if you don't know what to take.. the 'usuals' are a pain killer and adavan (which essentially relaxes the muscles).. it's important to take it 30 mins in advanced cause that's usually how long it takes for pills to be in your system.
-Try to be a relaxed as much as you can, now obviously this is more difficult than it sounds and again it depends on the person... have someone hold your hand or have a conversation during; imagine yourself somewhere and think of concrete things like smells and textures; listen to music etc. .... tensing up is the worst... sometimes it's unavoidable though... for instance just 2 days ago I had a LP.. and no matter what I couldn't relax.. this also has to do with how many I have had... I have had more LP's than I can remember... I think it's over 30 or so... anyways my point is that my body knows the pain... so it's clenches up and can't relax no matter what I do...its like a reflex.
p.s. excuse me for not using 'cc' this time... and also if this post wasn't very 'upbeat'
Honestly, at the risk of sounding cynical, there is nothing 'upbeat' about being involved in this kind of a situation whether you are the patient or caretaker. I think the best way to look at it is to face it head on...or at least try to be brave. I know that sounds like im telling you to ignore your feelings...but thats not what I mean. I can explain it better with an example from my experience. My wife used to come with me to EVERY procedure and everytime i got chemo and it made me feel like i could let me guard down and just be scared. When I decided that I should go alone ( this has to do with a different issue for caretakers and patients that ill talk about later...) anyway I noticed that when I knew my wife wouldnt be there it was easier for me to just suck it up and deal with it. For guys( or just me) its kinda like when you are a kid and you fall over...you don cry...you just hold yourself together. Its only until you see your mother that you burst out crying. So what ive found out is that its easier for me if i know i have to suck it up and deal with it...
(For clarification or questions use the comment area)
