Friday, March 28, 2008

Thank God its Friday

Made it through the day at work today! I feel about the same as yesterday but was able to get through it and looking forward to the weekend.

I really cant wait to visit my doctors next week and figure out where I am at. If this is how I am going to feel until I get treatment I am not going to wait. This is no way to live. I slept from 4:30 to 6 pm again today when I got home from work.

Ready to go to bed now (8:37 Friday Night)... Party Guy!!!


More again later. I will post my levels when I get them on Thursday.

Thursday, March 27, 2008

Late Update Again

Another late post!! Over the last two days I have been on a downward slide. My energy is about zero and I am not eating very well....

I feel like the flu is coming back. No fever thank goodness.

Yesterday afternoon at work I had a near meltdown! Believe it or not I started crying. I went into the plant and hid until I felt better. I didn't talk to anyone or take calls the rest of the day. I went to bed at 8:30. At least I slept through the night.

I am so glad I going to the doctors next week. A consultation on Tuesday and my current Dr. on Thursday.

Today I could hardly get through the day. I left at 2:00. When I got home I slept from 3 to 6pm.

Now the weird part about all this is when I woke up this morning and looked at myself in the mirror, I had broken blood vessels all around the outside of both my eyes. I about crapped my pants. They are going away and don't hurt.

(MOM DON'T WORRY!!)

The rest of my face is just getting uglier and uglier. I have not read anything that says your complexion goes to nuts with this. However, my seems to be heading in that direction.


My platelets must be going down. Anyway, I hope I start feeling better soon.

Well, I am not doing a good job at explaining myself. Sorry,I am way out sync and just feel CRAPPY!!!

Off to bed!!



Happy B-Day to my number one oldest Nephew!!

Monday, March 24, 2008

Surprise!! My fatigue has returned today!!

I had a great weekend and a great Easter. Now its back to same old, same old!! Let me know what you think of my picture!! Kind of poetic I thought..

Talk to you tomorrow.

Sunday, March 23, 2008

Happy Easter!!

I wanted to say Happy Easter to all my nieces and nephews!! I hope you had fun hunting for eggs!! The Easter Bunny left money in the eggs this year for the boys!!

Not much to report, thank goodness!! Still feeling great. Did a lot yesterday and still only took a little nap.

Looking forward to the first week in April when I meet with my doctors and see where I stand.

Getting ready for church so got to go!!

Talk to you later.

Friday, March 21, 2008

Finally (Its about time)

Sorry for the late update!! I have been having (challenges) posting this week!! After Monday I continued to be somewhat depressed. It convinced me to take control and get all the questions that have been swimming around in my head answered.

So I called up to OHSU and found a Doc who has dealt with HCL for a number of years. I have a consult with him on April 1st. I then called my doctor and moved my appointment to April 3rd.

This way I can get a second opinion as it relates to my treatment. I am concerned about When to treat and what to use.

The standard 2 chemo drugs work but I am worried about side effects and what it will do to my immune system. If there is an alternatives I want to know.. Also if I can hold off treatment, fine but I will not be in a position to ruin Cams once in a life time trip because of me!!

HCL allows you to plan and I will take full advantage of it.

By the way, I feel great today! It is the best I have felt in about 6 weeks. Not sure why and quite frankly, I don't care.

We went out tonight with some friends. Yes its only 9pm but for me just getting out for an hour or two and actually talking and laughing its a plus!!!

I really cant wait to get all this behind me and feel this way all the time! My wife deserves a fun person not a 90 year old fuddy duddy!!

I promise to not miss a whole week again!!!

Happy Easter!!!

Monday, March 17, 2008

Just Another Monday

It has been somewhat of tough day today. I am run down today and a little depressed. I have been sharing my vitals with others on a message board and it seems I am worse off than I thought.

It was pointed out that I could be within a month or less from needing Chemo. It was indicated that some were treated with levels the same as mine.

I am in no hurry to start Chemo and I am not sure if I should wait until my next appointment or push the issue. To be honest I am scared to death!! I am sure I will be fine but not knowing what it will do to me is scary. The odd are good I will be fine but odds have not been in my favor lately.

My biggest concern is making it to Florida the end of June. I don't want to miss it and I certainly cant go right after chemo or with a very low and vulnerable immune system.

Well I guess I will sleep on it.. Which seems to be the thing I do the best.

Bye for today!

Sunday, March 16, 2008

ANC LEVELS

I finally got some great info on how to figure out my Absolute Neutrophil Count:

Multiply WBC Count by the percentage of WBC's that represent the Neutrophils

Example:

Last CBC:

WBC- 3.5
Segs- 16%
Lympys 54%
Monos-29%
eos- 1%

hgb-14
hct-40
mcv-93
rdw-13
platelets-117

WBC-3.5 or 3500 X neuts or segs(Mature Neutrophils) 16% (
.16)=560 Neutrophils

Low Neutrophils= 1,000
Extremely low= 500

Risk Factors include high risk of infection due compromised immune system.

I am going to talk to my doctor tomorrow and see if I should worry. The biggest issue is everyone at work is getting that bad flu and I do not want to end up sick again!! I also emailed a Hematologist in San Diego who is on an HCL board I have been visiting.

I also going to contact another Hematology group. If I am going to need Chemo and my WBC's are this low I want to get this over with so I can go to Florida healthy and not worry about getting sick.

Don't feel sick today, just a little run down.

Talk to you later.





Saturday, March 15, 2008

Trending my CBC tests


Below are the results of my CBC tests from January thru March. My next CBC is May 5th.


Thursday, March 13, 2008

Happy Thursday

Good news I got my Boyscout High Adventure Health form back, signed sealed and delivered!! Thank god! It would absolutely send me over the edge if I missed that!!


I also got my Pathology report on my BMB. I had at the time 30% hairy cells in my bone marrow. My White count was 3.5 and my platelet count was 117,000.

Not sure where that leaves me but the 30% seams high!! I am feeling good so, what ever!!

Happy Birthday A!!!!

See you all tomorrow.............

Wednesday, March 12, 2008

Hump Day!!

Well it is middle of the week which means exactly one week ago today I was told I had HCL! Yahoo!!!!!!!!!!!!!!!!!!!!!

I got copies of most of my medical records today, except my BMB and my final Diagnosis. Once I get that I will start posting my levels. I want to be able to trend how I am doing.

I am also interested in what different type of chemo drugs are out there. I guess Cladribine is the drug of choice and seems to be very mild and may not make me sick.

But I have a ways to go before that.

Everything else is going well. I am still getting tired by the end of the day but not sure if its just stress.

I talked with most of dads at Boy scouts last night. Everyone was very encouraging and willing to help if I need it. It was great. It also helped to talk about it.

I am still obsessing on my legs looking for bruises and weighing myself 3 times a day (170lbs). I was 180lbs but that was before I got the flu. It probably helps that I am not drinking beer as much I used to.

Hey the good news is this thing may have saved my Liver!!

Monday, March 10, 2008

Monday update

Sorry for not posting yesterday! I am trying to start off on the right foot and put something up everyday.. I need to get into the habit.. I feel like "Doogie Howser"...

Anyway, I actually got something done in the front yard today!! Pulled weeds,etc. It has been about 7 weeks since I have even looked at my yard let alone done something to it.

I also went and got my younger sons birthday present! He will be 12 on Thursday..

Lastly, my older son did a very sweet thing last night. At his church youth group he asked if everyone would say a prayer for me.. That really made me feel great. The only issue, I know everyone there. So by now all of Wilsonville will know my HCL secret!!!

Oh well, had to come out some time. I am keeping this close to me as I really don't feel that bad right now and I don't want to scare everyone.

Lastly, lastly- keep your fingers crossed, I faxed over a Boyscout High Adventure Med form to my primary doctor. I need him to sign off that I am physical fit enough to go to the Florida Keys for 10 days in June. At this point, I don't see any reason why he wont sign off on it but you never know. This whole thing started because I went in to GET A PHYSICAL FOR THAT TRIP and look what happened!!!

That's it for today!!

Saturday, March 8, 2008

The Bone Marrow Biopsy Experience- 2-27-08



OK-

As I said earlier, I was not prepared at all for what lay ahead.

Now I thought I was fully prepared and well informed about this test. I saw pictures and videos on the Internet, which my Doctor told me not to do. However, is it funny how you always do what some one says not to.

Anyway, there I sat in front of my Doctor as he explained exactly what he was going to do. I stripped down and put on the gown.

He then had me lay on my left side with my knees pushed up toward my stomach. Almost in a fetal position. He then pushed me to very edge of the bed, (this becomes important later).




Next he disinfected the area on my back he was going to insert the needle and gave me a healthy dose of a topical anesthetic. He chose an area just above my right butt cheek . The goal is to get into the pelvic bone.

He then took a small scalpel and made a small incision. So far no big deal! Now keep in mind I cant see a thing he is doing and Thank God!!

Next, he took the needle and began inserting it slowly into my back. When he hit bone, I swear I heard a pop. Then he told me he was going to begin removing the bone marrow but it would feel a little weird! If I wasn't freaking out by now that sure helped !!

Sure enough as he began drawing out the marrow I got a little dizzy and light headed. Then he removed the needle, patted me on the back and said "take a break for a minute".


Now the fun begins.......................

He re-inserted the needle for a second time in order to get a sample of bone. Now you would think this would be straight forward but it was not.

He began twisting the needle and pushing very hard on my back. So hard he nearly pushed me off the bed. As he worked the needle back and forth, back and forth I could hear him breathing heavy and thought, "that does not sound good".. I all of the sudden broke out in a cold sweat as I got a dull sensation rush down the right side of my leg. I felt like an enormous amount of pressure was rushing through my back.

He then stopped and I felt the needle coming out. I then heard whispering in the back ground and a great big sigh! My only thought was NO WAY HE IS GOING BACK IN!!

At this point, I am shaking uncontrollably and getting very cold from the flop sweat all over my body.

The doctor apologized and said " You have very dense bone, I am use to doing this on 60 year old women". Great, I am Wolverine with Adamantiam bones!!

He then FIRMLY placed his hand on my hip and re-inserted the needle (for a third time). He pushed harder then before and nurse held my legs so I would fall off the table.

I started sweating, I nearly bit my lip off and tears started falling out of my left eye!! I thought I was going to die! I can only say it really was not a feeling of pain but as I said earlier, just a feeling of enormous pressure and force being placed on my lower back and though out my entire lower body!

After what felt like an eternity he pulled the needle back out and I prayed he was done.

Prayer answered, he said he finally got what he needed, patted me again and left the room.

The nurse apologized, cleaned up the site and put a dressing on it. She helped me sit up, I felt a bit dizzy but OK.

The nurse gathered up all the samples and left the room.

Once alone, it took every ounce of strength I had to not lose it in that room. I got dressed and set up my next appointment.

Believe it or not, I went back to work. I didn't talk to anyone or take phone calls. I just basically sat there and tried to keep it together.

That night after I went to bed, I absolutely lost it. I swear I cried for about an hour. Not really sure why..

It was an extremely emotionally draining experience for me and I pray I will never have to do it again.

I read a story of a cancer patient who has to do this test once a month. ONCE A MONTH, I can not imagine. I have enormous respect for those who do this on a regular basis. I truly don't think I could do that again..

And hears the funny part, I had actually suggested he do this before the CT scan as I was very anxious to know what was going on. I AM AN IDIOT!!


So there you have it!! IT SUCKED!!

The Begining

Well this is the first of many I guess. Forgive me for the bad writing and mistakes as I have never done this before and quite honestly it is not in my nature to have a diary or record my thoughts for all to see...

But, I think right now this will give me something to do and keep track of how I am doing.

I was diagnosed with Hairy Cell Leukemia on March 4Th 2008 at 1:00 pm. To date I am still trying to figure out what it means!

It all started in early January when my wife suggested I get a full physical examination. I thought why not, it had been over two years since my last one and I am going with my son to a Boyscout High Adventure outing in at the end of June. The High Adventure program requires a detailed health history and physical exam in order to participate.

When I left the doctors office that day I was feeling and happy to have gotten that done. One week later I get a letter from my doctor with all my blood work. Along with that letter was a note stating he had noticed "slightly" low white count (3.7) and a low platelet count (80,000).

I talk to him over the phone and he thought it would be a good idea to see a Hematologist in order to be sure nothing major was going on.

The first blood I did with the Hematologist showed the same results. He did an exam to see if he could feel my spleen. He felt nothing but because of my age, he wanted to be sure everything was OK, so he ordered an Ultra Sound.

Surprise, I had a "slightly" enlarged spleen, about 2cm larger than normal. Doctor was surprised but said no big deal. My next blood work showed again 70,000 platelet count and a white again of 3.7.

He thought there might be a slight possibility of Lymphoma in my spleen so he ordered a CT scan to double check.

The results were negative. When I went in for my next office visit, my white count dropped to 3.5 but my platelet count was up to 117,000.

We finally decided to do a Bone Marrow Biopsy just to be sure nothing major was going on.

I have to say that I under estimated the whole Bone Marrow Biopsy experience. It SUCKED!! The Doctor said it was tough because I have very dense bone! I took that to mean I couldn't possibly have anything wrong!!

A week later my Doctor stood in front of me with a look of amazement as he told me I had a very rare form of Leukemia called Hairy Cell Leukemia.

I swear, I almost started laughing!! It figures, I cant win the lottery but I can get a disease with worse odds than the Lottery. No, I have yet to buy a ticket.

Well, he told me not worry and that if I had to get Leukemia, HCL is the one to get as it is manageable and wont shorten my life span.


That brings me to today- Saturday March 8th...

More to come as I learn as much as I can about what lays ahead.