Wow

October 30, 2013 in Lymphoma

A GIANT

THANK YOU

to our family at ar15.com

We are forever grateful and honored.

Back to Houston

October 6, 2013 in Lymphoma

Leaving in the morning……

Will be there for two days. More tests and more chemo. I’ve lost 13 lbs this week. I have not been this sick since April. I’ve thrown up and well……had it coming out at both ends.

I’ve had lots of comments on how healthy I’ve looked while on chemo because of my weight. That was all steroids. Now I think they found a dose that makes me look like a cancer patient. I’ve been miserable all week. Many people say hang in there because it’s so easy to say.

If Dr. Kevorkian would have come by this week I would have let him hook me up. I know I have to be strong and fight but damn. Anybody want to trade places for a week to give me a break?

Saturday the nausea finally left but another symptom showed up. I’m white as a ghost. I passed out in the bathroom and broke the toilet seat………between no food and no blood I’m a mess. Today was better but I’m still pretty white. I’m pretty sure I’m going to be given some transfusions tomorrow…..my head looks grey and pasty and my hands are so white I could scare the kids on Halloween passing out candy without dressing up.

This was by far one of the worst weeks. No more chemo pills for two weeks so maybe that will help? I dunno…..This shit better be working and shrinking my tumor because I’m giving it all I have. There isn’t anything left unless they just knock my ass out in a hospital.

Anyhow……I’ll try to update again while in Houston tomorrow.

Small Update

September 14, 2013 in Lymphoma

Dr. Hagemeister will be my Oncologist in Houston.

He’s an older doctor and very experienced with Burkitt’s lymphoma.

It’s not a last resort thing, there are other options.

[link to faculty.mdanderson.org]

My life is in his hands.

I’m not scared anymore. I’m worried, but I truly believe I will live a long life. I’m just going to have to go through hell to get there. The bone marrow transplant has me scared. I will have to do that. No way around that now……

It’s my understanding this really high dose of chemo I have been on…..well I guess there is a super duper uber extreme dose.

Technically they can’t give me anymore than my body can handle, and this last dose had my blood in the crapper. My road is longer and harder than it was a few weeks ago but I never seem to take the easy road in life. I don’t know why I have to be so difficult.

Nobody knows what the future holds but I have the best friends on the planet and incredible understanding bosses/doctors…. if things don’t work out in the end I can be happy knowing I was loved and cared for. I’m not really even sad anymore…….I have ya’ll and my family and I feel content tonight.

I’m going to Houston and they are going to get a grip on this stupid tumor and things are going to turn around and I’ll be back to work soon.

That’s my plan.

 

Fuckity fuck fuck fuck

September 6, 2013 in Lymphoma

The tumor is bigger.

It is now 11.5 x8 x8 cm

It is no longer responding to chemo. It has grown since the last PET scan.  So no more going to Harris Fort Worth for Chemo and Hyper/CVAD

It’s off to Baylor Dallas or MD Anderson in Houston….Dr. Ommmen’s choice I guess.

To say I’m upset is an understatement. Disappointed, in tears, sad, mad, I’m overwhelmed with emotion right about now.

I don’t know what to say. This tumor is one mean SOB. I don’t want anything to do with it. It’s almost like it’s happening to somebody else. It’s just surreal. I feel like I’m trapped in a bad dream and there is this Dr. who can’t seem to ever give good news. I want to cry and scream at the same time.

I feel like I’ve been put through the damn ringer and I’m so tired of feeling like shit and this is my reward. My tumor saying “fuck you” I’ll just get bigger and put you and your family and friends through more shit. I don’t know why they just can’t cut the goddamned thing out. Believe me I’ve thought about it a time or two myself. Little bit of alcohol and a sharp knife. Couldn’t be any harder then gutting a deer. Guess I get to miss deer season too speaking of deer. Dove season is shot to shit.

So what is the plan besides me doing self surgery? Going to Dallas or Houston and re-establishing tumor shrinkage through chemo and bone marrow transplant.

The plan is to try chemo drugs I have not tried as follows. It’s called RICE of all things.

ICE
regimen 1
Ifosfamide 1000 mg/m2/d iv over 1 h d1-2 (hours 0 and 1)
Etoposide (VP-16) 150 mg/m2/d iv over 11 hrs after ifosfamide d1-2 (hours 1-11)
Carboplatin (Paraplatin) 200 mg/m2/d iv over 1 h after etoposide d1-2 (hours 11-12)
Etoposide (VP-16) 150 mg/m2/d iv over 11 hrs after carboplatin d1-2 (hours 12-24)
Mesna 333 mg/m2 iv 30 minutes before ifosfamide, repeat 4 and 8 hrs after ifosfamide
Q4w x 2 cycles

regimen 2
Ifosfamide 5000 mg/m2 mixed with Mesna 5000 mg/m2 iv over 24 hrs d2
Carboplatin (Paraplatin) AUC 5 (max 800mg) iv d2
Etoposide (VP-16) 100 mg/m2/d iv d1-3
Filgrastim (Neupogen) 5 ug/kg sc qd d5-12
Q2w x 3 cycles

RICE
Rituximab (Rituxan) 375 mg/m2 iv d1 q2w x 3 cycles
ICE regimen 2 as above

 

So that’s all I got for now. I hate sounding like a pussy but the tears are back and I’m fucking pissed and upset.

Update:

Sounds like MD Anderson because they don’t have the new drugs in Dallas.

PET Scan and Platelets

September 6, 2013 in Lymphoma

So last week I could barely get around. Just standing up was impossible. Last Wednesday my levels were low and I needed blood. On Friday instead of getting blood drawn at Texas Oncology I was sent to the infusion lab at Baylor and had lab work done there.

Hemoglobin was 6.2 and Platelets dropped to 3,000 from 13,000 according to Baylor on Friday. I had no idea platelets could be that low and somebody still be alive.

So I made it through the weekend, and still felt like crap so back to Baylor on Tuesday (9/3) for MORE blood and platelets. Platelets were 15,000 and Hemo was 7.2.

I feel much better now…….not sure what my counts are but I can promise you when your platelets get below 15,000 you will feel it down to your core.

Yesterday, Thursday the 5th of September I did another PET scan. Today we find out the results. I am trying to be positive but I’m very worried. Dr. Oommen wanted me in remission by this point and I can tell I am not. I’ve had some really bad night sweats lately and night sweats are the number 1 sign for Lymphoma cancer. Reta is trying to be positive. Appointment is at 2:00 p.m.

I’m nervous as hell. I want it to be a good scan, but I’m trying to be realistic. I guess I would rather be surprised then let down so I’ll just stick with being worried for now.

I’ll report back later today I guess.

And back to the hospital. This time Baylor

August 30, 2013 in Lymphoma

I get my blood drawn at least 3x’s a week so they can keep on top of what is going on with my blood.

My platelets are 13,000 and the normal is 150,000. So instead of getting blood drawn, I get it pumped in. Actually I think I’m just getting platelets….I sure hope I feel better after that. I’m really getting tired of this. I want it to end. I now know why people that have been on chemo for a while say they can’t take it anymore during the last couple of treatments. Physically it is exhausting, and that in turns into frustration. Want to jump up and answer the phone? Go to the bathroom? Get food?

It’s a herculean effort at times just to do the dumbest most mundane tasks. I mean how hard can it be standing in a shower rubbing a soapy rag over your body?  Well getting undressed and into the shower takes a ton of effort. With a 50% blood supply, feeling sick, all one can do is pant like a dog and hope you don’t pass out. Then you dread getting out because now you gotta dry off, put your clothes back on, and walk to another room. Man it’s tiring.

And after 5 months of that crap it really really really starts to get old. I have two more scheduled treatments and it could be 4 more if I’m not in remission. I know I’ll get through this but it’s starting to become the hardest thing I have ever done in my life.  And the funny thing is, I’m not really doing much of anything but sucking down chemo and bitching about it.

Oh well. I just wanted to write this down so next year I can laugh about it. It’s survivable, but man is it an eye opening experience. I feel horrible for those on chemo. I would swear it’s worse than the cancer itself……I almost forgot about the weight swings. OMG. I have gained and lost 36 lbs back and forth. That is the range. I gained, I kid you not, 22 lbs in 3 days last last time I was in the hospital. I couldn’t bend my knees and the shoes I came in with no longer fit my feet they were so swollen.

I detest, despise, hate, and CANNOT stand steroids. Holy crap those things ……..while they may shrink tumors they make everything else swell like crazy. I’m going to be so fat and plumped up. I look like crap……..I want to be thin and healthy next year. I’d take that over a million dollars because that’s what would make me happy.

Back in the Hospital

August 20, 2013 in Lymphoma

Round 6 of 8.

This is the dose I really hate….Methotrexate. The Yellow Devil. I’m in Room 734 7th Floor Harris Downtown Tower…..Bored if anybody wants to come by. I’ll be here through Thursday.

So far no nausea, I was really dreading that and looks like I’ll be doing ok for the week. White blood cells are back up from 0.004 on Wednesday so risk of infection is low for now. Hemoglobin is way down again, as well as platelets, so I’ll be getting more blood for sure. And more steroids……..I really hate those things.

I feel so fat and bloated. I have two wishes – remission and weight loss. My face feels and looks like a puffy mess. With no eyebrows now I hardly recognize myself. I keep poking my fat face in the mirror. I look friggen gross.

I need sun AND exercise…..both are impossible at this point. I want off the steroids more than I want off the chemo……they won’t let me sleep, they give you extreme hunger pangs that are so bad you’d put ketchup on a chair and eat it with smile then wonder why you are still hungry. They bloat the shit out of you and make you swell. I just want to pull my hair out…..But I don’t have any. Anywhere.

My digestive tract is jacked too. OMG the stories you don’t want to know. AUUUGHHH. There are so many side effects people don’t talk about……

Anybody feel like bitching moaning ….today is a good day. I’m there with you…..let’s just have a good conversation and let it all out. Everybody has problems, let’s just get it off our chests.

Breath and blood

August 7, 2013 in Lymphoma

I was asked today “How many transfusions have you had?”

I had no idea. I received two last week, but in total since this started? I really don’t know, too many to count.

That got me to thinking, people who donate blood sure saved my butt and I can’t thank them enough. But others can do their part……

I get asked all the time “What can I do for you and your family?”

I have an answer now. Donate blood. Please. I can’t ever do it again because of cancer, but those of you that are healthy can sure save others and help those going through chemo by donating blood. Chemo destroys blood cells so it is absolutely necessary to get blood transfusions, or get two or three units of blood during chemo. Especially at the doses I’m taking. I’m A+(positive) for blood type, thought it doesn’t really matter what you are, you will be doing good for somebody that really needs it.

I’m low right now, I can’t catch my breath today. Just walking to the bathroom I feel like passing out and I’m out of breath. I just don’t have enough red blood cells to carry the oxygen to my body. I’m basically stuck on the couch……It’s not one of the things I ever thought about for those dealing with cancer.

They measure your red blood cells by “hemoglobin” ;

Hemoglobin (/hməˈɡlbɪn/also spelled haemoglobin and abbreviated Hb or Hgb) is the iron-containing oxygen-transport metalloproteinin the red blood cells of all vertebrates[1] (with the exception of the fish family Channichthyidae[2]) as well as the tissues of some invertebrates. Hemoglobin in the blood carries oxygen from the respiratory organs (lungs or gills) to the rest of the body (i.e. the tissues) where it releases the oxygen to burn nutrients to provide energy to power the functions of the organism, and collects the resultant carbon dioxide to bring it back to the respiratory organs to be dispensed from the organism.

So when this level drops below 8, it’s time for me to get blood. Normal levels are:

If you are a grown-up male Between 14 and 18 gm/dL
If you are a grown-up woman Between 12 and 16 gm/dL

So imagine if you open a vein and drain out 50% of your blood supply, stitch yourself back up and try to go back to work.  Won’t happen. If it is done that fast you will just pass out. Those that are anemic or have low blood supply, that lose it slowly overtime, adjust to the lower levels to a point and can function but may appear to be lazy and tired all the time. And they run out of breath easily. It’s called being anemic. Women are more able to handle it because of their monthly cycles and when they say they are tired, well……they are.

Men should never be below 14, ever. 16 is normal, so I’m pretty darn low because mine stays between 7-8. I’ve been in the low 6’s before as well. Not a fun thing.

Anyhow I wanted to write this all down so in the future I can remember it’s not just the sickness from the chemo, but the lack of energy due to low blood. It’s hard to write, it’s taken all day because my brain just can’t focus at times, and I feel weird. But I do want to ask again, please, if you can, donate blood. There are 10 donations sites within 10 miles of me, some are Mobile centers at familiar eating places and a lot of times you get a free meal.

https://ww2.greatpartners.org/donor/schedules/zip

Just put in your zip and find a time and place and help those that need it if you want to or can.

Round 5

July 29, 2013 in Lymphoma

Back in the hospital, room 735. Second time I’ve been in this room………

I feel like crap and looks like I get to start out with getting blood.

I need it, I can’t even catch my breath………hopefully I’ll be out by Friday but anything can happen between now and then.

I’ve been horrible about keeping this thing up to date…

July 22, 2013 in Lymphoma

So not much has been going on. I don’t remember being so sick the first time I had the Methotrexate dose as I did this time. I was actually throwing up in the hospital, first time even with two type of anti nausea meds.

When I got home, it took over 6 days to recover….basically you feel like shit. It’s not a nice way to say it but it’s more honest then saying crap.

Walking to the bathroom is a gargantuan effort, because it feels like somebody drop-kicked you in the bowels. It friggen hurts. To make things worse, it takes major pain medicine like Oxycontin to overcome that but then it constipates the hell out of you so three days of that is …well…..

You sleep a lot. I mean non stop. You don’t want to get on the internet, you don’t want to talk on the phone, you don’t even want to talk. The sores in my mouth this time were pretty big and I had a huge blood blister on the side on my mouth. I don’t remember biting it but dang. My tongue even hurts….and I’m turning into a lizard. My skin is dry as death valley sand and flaking off. Mostly on my head and face. I’m like WTF?  Chemo sucks.

Screw cancer with a barbed-wire wrapped baseball bat.  I know the Methotrexate is killing the cancer but I’m really dreading two more doses of it. 1800mg is too much. It’s 200mg then 1600…..and I have 2 more of this course.  I know I have to do all 8 doses but I gotta say, if this stuff builds up over time and gets worse, dang.

It’s been 10 days and I still run out of breath walking around the little bit I do. I tried to walk upstairs and ran out of breath, walk to the mailbox and back, out of breath. I’ll be so happy when I feel good again. I’m am sick and tired of being sick and having no energy. I feel like a prisoner and it’s just making me lash out and get mad.

I guess that’s a good thing because I need to stay fighting mad. I seriously want to take this cancer out to the gun range and smoke it’s ass with some hollow points. I just want to get to remission and stay there. I’m so afraid it’s going to return and I have not even gotten to the remission part.

I can’t fix anything because they don’t know what caused it…..so anyhow… I know people wanted an update. I wish I had more to share but basically I’ve been sleeping. Exciting huh?