I’m still here!
Sorry it’s been so long since last post. I’m doing OK. I am real fatigued lately with this chemo stuff. The doctor says tumor is down 60%. That is the good news.
I have been working real hard to catch up on hours lately due to and small financial crisis. So not much time to post.
I love you all for supporting me.
More later
Here’s more
Friday morning and I’m feeling better for now. I got good nights sleep and I think I will make it today.
Thursday I did not feel so well. I was up at 6 am for work but by 9 am I was cranky, nauseated, and tired. So I had Jules call in sick for me. I was in bed and couldn’t wake up. I napped till 3:30 pm then went back to clinic for a shot of growth hormone to make my bone marrow produce more white cells. Doctor said my white blood cell count wont go so low that way and my risk of catching any infection will be lower.
So, chemotherapy cycle #2 is in my body. The personal problem I have? Right now I’m steaming mad about this! This is first time I have gotten angry. My little boy inside keeps saying, “I hate this! Make it go away! I don’t want to do this anymore!†Then the grown up inside says, “Why me?†This is crazy! I know the outcome of the alternative. I know I need to pursue the treatment.
I went to church last night and again The Lord saw fit to aim the hymns and sermon right at me. I know The Lord works for everyone but He knows my needs!) This happens every time I go to church. I’ve been a Lutheran all my life but now I’m finally “getting it†slowly. The opening hymn “Be strong in the Lord†made me cry. I would post the lyrics here but can’t find them. It deeply affected me.
I’m not good at prayer but hear goes. Lord have mercy on me. You are the physician! You are the light! You know the plan for me. My suffering in no way compares to Your suffering on The Cross. You did that to forgive ALL our sins. Please give me the strength to endure this ordeal and help me see it through till the end. Please help all others who are suffering this disease or any other medical problem. I lay this in your hand Lord
In Jesus name
Amen
Look at this!
Don’t I look like “Uncle Fester†in this picture? Pretty goofy looking eh?
Tuesday afternoon sitting at my work desk and thinking- boy what I would rather be doing now-I immediately think an airplane ride would be fun. I’m taking The Bug for his first ride at the balloon rally this weekend.
I felt really good yesterday but did not sleep well last night and today I’m tired again. I’m getting tired of all the poking I have to get for all theses blood tests. I had a quart drawn today and will have 2 more in am.
Yep, you guessed it! I get my 2nd cycle of chemo tomorrow. I’m not thrilled to go. At best, it will be 4-6 hours of pure boredom. That’s if everything goes right. Last time I had bad reaction to Rituxan( Rituximab). It made me shake and cramp up bad.
I just got off the phone with my clinical trial nurse and she said my records show white blood cell count went rear low into 700’s and all my reactions were mild. What a wimp I am! Kind of makes me mad! I have never done this before and my reactions were mild??? Dang!
I better stop now and think about airplanes again for a while. I’ll update later.
Click the picture above to see more pics or here to see the video!
Warning! Large download!
Baldy
Well, at least the days are brighter now for a while!
As you can see, the hair is gone on my head. It did not all fall out yet but I shaved it to look and feel better. For those of you raised on a farm it felt like I was in a barley bin for 3 days. For those of you city folk, I was shedding like a cat and itching bad for 3 days. So I decided to shave it off. Looks cool don’t you think?
I’m at the stage of “feeling better†now. Unfortunately, my next treatment is in 4 days. I get to start all over again. Some people say it gets easier and some says it gets worse. I hope I’m the lucky one and it gets easier!
The wife is better now too. Instead of getting tear’d up about me hair, she just laughs now.
Funny looking???
Me thinks it’s handsome!!!
Click the picture above to see more pics or here to see the video!
Warning! Large download!
Why Me?
Its official. Its “hair fallout†day.
And I still feel yucky but am coping. It appears that I’m running 2 or 3 days behind the “schedule†that oncology nurse gave me. I should have been losing hair last Sunday but it didn’t start till today.
I feel like such an @$$. My wife can see right through me. (See previous post). I really am scared about how this is affecting my body and I’m impatient about lump going away. I looked at before and after on the video and it skeeved me out. I really don’t look good either. Last night after supper I felt just sapped of energy.
How does a grown man or woman deal with this? I’m working today but I really just want to curl up and whine and moan. Is this going to get any worse??
My wife is having hard time with the hair loss thing. I think she is worried about looking at my lumpy head. How can I make her feel better about this? I’m doing my best not to get totally upset about theses things. Yes, I do hide or try not to show how I’m really feeling. It helps me deal with it better.
Now how do I get the 17 yr old to calm down and discuss his feelings about this, life, school, job etc with me? I know he is upset, but all we do is scream at each other. My fault too because I have little patience right now.
Why does he feel the need to correct me if I don’t say something right or if I misspell something? Or if in a heated yelling match if I don’t quote something verbatim. Why does he or anyone else for that matter have to do that?
Who is the adult/parent here?
Help??????
How Al REALLY feels
Ok… so that pretty much explains it all… he TRIES to be all “calm, cool, and collected” but the reality is, he’s scared, sick, and angry.
Not necessarily in THAT order, but he’s definitely thinking all three of those things at one time or another. And looking at him this evening, at dinner, I’m thinking he’s all three of those at the SAME time today.
I hadn’t really noticed that he was getting that “I’m on chemo, and can’t produce any skin color” look, until I saw the “before and after” videos that he put on the web today. There’s a definite “gray-ness” to him now. He really has been putting forth a monumental effort to make me think he feels better than he really does, but tonight, I think he finally realized that using all his energy to try to pretend that he’s NOT sick, is taking away too much energy from just getting by. I think that right now, he’s got just enough energy to breath, go to the bathroom a couple of times a day, and maybe feed himself. He’s just SO worn out!
And he says it like it’s been unexpected. It’s almost irritating. I know he’s got this “macho” image of himself, that he doesn’t “give in” to illness, but holy cow. This isn’t just your average cold… this is the effects of pumping what amounts to poisons into his blood stream for several hours a couple times a month, and they TOLD us he was going to feel like a wet sock… I just don’t think he believed them.
I love the man, but sometimes, I don’t think he pays real good attention. Or is it just that he has “man ears” when it comes to information. If it’s bad news, he only hears the parts that aren’t so bad, and the rest is just a buzz? Honestly, I’m quite surprised he’s made it as well as he HAS! He really has been a trooper, and I know that every cell in his body is screaming “GIVE UP! GIVE IN!” but he’s fighting it every step of the way, which just makes me so happy. I can’t imagine life without that big goof ball in it. I know I complain sometimes, but wow… I just can’t imagine having to say good bye.
And that’s the beauty of this whole thing. HE can’t imagine life without ME in it either, so he’s fighting to keep going. Before he had Andy, and Ben, and me in his life, I think he might have just rolled over, and let it happen. I don’t mean that to sound arrogant, but it’s true. He’s said it over and over. His friends have told me that, and, well… from everything I know about the man, I’m sure it’s why we met. To get him through this time.
Speaking of which… it was 7 years ago today that he and I spent 13 hours together, talking, and talking, and talking to each other. It felt like 13 minutes, and we spent the whole day together. It was the first time in Ben’s life that I didn’t think about HIM in more than 15 minutes. ‘Twas very traumatic for HIM, but what a wonderful day for Al and I.
Posted by Julie
week 2
Well, here it is week #3 of chemo and I’m just now starting to feel better. Trouble is, next Wed I get second treatment. I sure have been through the range of side effects. I hope next treatment goes easier. It sucks being sick!
Keep checking back! I will update this video when the hair falls out!
Click the picture above or here to see the video!
Port Installed
Lumpy had his Port installed today. This will make the Chemo go easier and Blood draws will be simple also.
What is a “Port”? Click here
Lumpy’s Yuk-Yuk
Hi All
Well the first week of chemo is just about over and I would like to says that I have handled it well but,…. I haven’t. This nausea thing that is ever constant and lurking around as the poisons flow through my body. I try to ignore it but it is there. The meds do work but only if I remember to take them. I know that the medicine is working because I can feel it. My tumor in lymph node has shrunk by 50% already. I really don’t feel well at all. I’m real tired and the waves come and go. My stomach is a mess. I am able to eat though and I slept pretty good last night. The toughest thing about this is the mood swings! i go from way high to real low at the snap of a finger. Then i start to fret about how this is affecting the wife and family, Oh well, i can get through this. I know the Lord has a plan for me and I will follow.
Again, thanks to all of you that are supporting us with your prayers. They ARE working!
Alive in Christ
Lumpy
Lumpy’s Lymphoma Lowdown
Alrighty then… we have a diagnosis… and a general plan of action. The diagnosis is: (insert drum roll here) Diffuse large B-cell lymphoma. It is the most common type of non-Hodgkin’s lymphoma, and requires that we get on it ASAP. It’s a moderately aggressive lymphoma, which means that it’s fast growing, but we got it at stage 1, or at worst, stage 2.
Tomorrow, Thursday, July 27, we go to Marshfield to get the staples out of his neck, meet with the RN who screens people to take part in clinical trials of new treatments for this disease, and then he has some test in Nuclear medicine in the hospital up there to determine if his heart is strong enough to withstand the chemo. If all systems are “go” there, then we start chemo on Monday, July 31.
Dr. B said that we’ll have 4 to 6 cycles of chemo. He actually has the drugs injected on one day, every 21 days, and will have another PET scan, CT scans, etc, after the 4th cycle is administered, and if there’s no sign of this nasty little node in there, we won’t have to do any more chemo. If there’s still some of it hanging around, then they’ll do the full run of 6 cycles.
I gotta be honest with ya here, I’m sitting here shaking, and on the verge of tears just thinking about having to watch Al go through all this. Never mind how HE must feel about having to DO the treatments. This is scary, scary stuff here. It’s finally hitting me, I think. I’m still comfortable with the care and treatment he’s getting, and I’m convinced that he’s going to be fine, ultimately, but this interim crap is really gonna suck.
Thanks for the prayers, thanks for any happy thoughts you can send our way… love you all!
Posted by Julie
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