Beating Cancer

“

Sixty days since my abnormal PET. 4 weeks since confirmation.

I get there at 9AM. And head to The Clinical Research wing. Used to be inpatient. Private room with restroom, Bed & Cable! Blood draw and wait for results, drug mix. I think I started around 1130.

Pre-meds; Anzemet (cancer ant-nausea) and Dexemethesone (Steroid). Yay. All infused.

Infused with anibody or placebo. 1ml/min for 30 minutes. Caution. Then given the rest faster. I start to feel symptoms from the Anzemet.

The Nurse then does a slow bolus of the first drug (V), then I get infused with "G" & "D".

Done at 4:30. Fatigued, tired, dizzy, unfocused, annoyed, vein is slightly bruised.

Popped a compazine at 530. preventative nausea.

1 done, 11 to go. If Insurance doesn't authorize more anzemet I'll need to look for alternattive anti-nausea medication. I Love Brownies....

I'm #&%!$ing beat. Don't even think I want a drink.”

“Bear, I hope you are feeling better. It sounded like a long day having to go through all that.”

“I feel OK. Thanks, Rich. I have low level nausea. And a headache that won't quit. Didn't really expect such a reaction for the first round. My first battle it was accumulative. They say this is less toxic but I guess maybe that's completely independent of side effects?”

“Nice going there, bearmagnet. I didn't realize that you could do so much.

Just sitting and laying around provides me with more time for checking the threads on TT. Unfortunately, the more I read, the less I want to read. Hmm, I wonder why?”

“Bear, good to hear you are okay and hopefully the headache is gone. When I first saw that picture of the infusion pump with the chemo on it, it gave me the chills. It brought back memories too of some things a few nurses told me while I was hooked up to a pump getting chemo and I never forgot them. One told me "You're fighting a war here" another said "it always feels worse before it gets better." One other one walked in with a pin on in bold lettering that said "Miracles Happen" All three things turned out to be true.
last edited: 8/11/07 5:56:35 PM”

“thinking of both of you....prayers & lots of hugs!!!!”

“some threads are not so fun to read, eh?

As always, thanks Div. I appreciate it greatly

Those are great thoughts Rich. And I try not to think along certain lines. And so does my wife. But we can't help and think what we did wrong. I had read about demanding more chemo. Why didn't I insist on one more treatment? Why didn't I push for radiation?

I know there's nothing we can do about it but it sucks. And all those scans between "final treatment" and diagnosis. Most for naught.

Just pisses us off.”

“I was not talking about this thread.

Right. We just do what we need to do and what the doctor tells us to do. But it does not mean that we should lose our awareness or close our eyes. For example, "Boston Scientific agreed to pay $195 million to settle claims related to a potentially flawed defibrillator made by its subsidiary, Guidant. ..."
Article was found under a google search for defibrillator. My understanding is that I have a more recent model, but I will be checking.
last edited: 8/11/07 8:01:20 PM”

“Thanks for the good wishes Divinity.
Bear, I can understand your anger, anybody would be angry in that situation. I think you just have to make the best decisions you can at the time and just keep moving forward no matter what. I went through that too, questioning everything when an outcome wasn't what I expected or things weren't as easy as I thought they should be. The problem is that the treatments themselves have risks so if you decided to have radiation and then suffered horrible side effects you have to live with each day, you might be kicking yourself for doing it. I went through that after I had radiation because the side effects were so harsh and I said to myself, why did I do this, I think it was a mistake? You can see where I'm going here and you can always raise questions about everything because with cancer, it seems there's monster around every corner. Also, they don't know everything there is to know so lots of things are just a shot in the dark anyway. You just take your best shot at the time. I think when you consider that, you didn't do anything wrong.

As far the as scans being a waste of time, I thought about that too because the same thing happened to me. I look at it this way. I had my scans and went for my screenings, all of it cost me lots of time and money. Each time I came home with a clean scan or a good exam I felt like I bought another month or two of peace. After a certain time I relapsed, but even so they were able to find the cancer while it was still treatable. It still sucks to relapse, but at least the scan found it in time so based on those facts, it wasn't a waste of time at all. The scan worked as it should, it gave me peace when I needed it and found a problem when it could be treated.

It's doesn't take the pain and disappointment away from relapsing, but that's how I look at what you mentioned.”

“Wow Rich. Nothing beats talking to someone who understands. Thank you. I think those two paragraphs might help me more than anything anyone's ever said to me. Again, Thanks.

Peace.”

“You're welcome Bear and glad I could help out.”

“Glad you two are finding your way.

I'm hoping to find my way back to good health. I've had plenty of help and have the needed treatments.

Someone must be watching out for me. I could have ended during either direction on this past trip. I did play it safe going out to Las Vegas. I let my daughter do all the work at our campsites, because I was worried about my heavy breathing from every exertion. She unpacked the car, set-up camp, got out all the cooking stuff, etc. I only lit the stove and boiled water and/or warmed some food for all of us. She put things away, broke camp and packed the car. She probably saved my life, as my heart had become quite weak. So in Las Vegas I received a defibrillator. In 1990 I experienced a cardiac arrest and received 5 bypasses.

We played it safer on the way home, staying in motels. But when we arrived at my trailer, I almost went down. So we called 911 and I went to a hospital again. They found the three, large blood clots, decided to treat it with chemicals only (a 2 out of 3 doctors' decision) and I am now at my daughter's place.

At least I'm still alive and expect to spend many more years with my loved ones and doing some more of my favorite activities. With all that you two have suffered, I'm glad you're still moving along and will be able to continue for many more years. I look forward to meeting each of you one of these days.”

“I let my daughter do all the work at our campsites, because I was worried about my heavy breathing from every exertion. She unpacked the car, set-up camp, got out all the cooking stuff, etc. I only lit the stove and boiled water and/or warmed some food for all of us. She put things away, broke camp and packed the car.

I'm going on a trip with just me and Dad in September to the Boundary Waters Canoe Area. Real back country tripping. He said, "This may be my last trip up there.". I told him, "Bullchit dad . That's the great thing about the BWCA; if you need an easier trip ya just make one. I'll do everything.".”

“Good morning.

Anyone else going to visit doctors today? I have to go give a blood sample. I had to call a doctor yesterday for swelling in one foot.

Nigal - You're invited to join my next trip.

All of you enjoy a great day.”

“Nowslimmer, I'm glad you can still get out and enjoy yourself after all you've been through with the heart problems.”

“Thanks for the updates guys. Last night my 2nd grader was really upset and didn't want to go to school today. He said he was scared. I talked to him about how brave people are sometimes scared and brave people sometimes cry. He didn't know that bravery is doing what you're scared to do. Lots of brave people on this thread.”

“Yes, NS. You make me want to push myself, maybe thinking I can get a trip in while going through this bull#&%!$.”

“Naw, my stuff has been easy. I just have to lay there under drugs while they operate. You guys have had to suffer pain and the unknowing, some of which endures. My pains are from the needles, which I hate with a passion. Years ago I used to pass out at the sight of a needle. I could never be an addict. And my pains don't last moure than seconds. That is, except for my knees, but that is a different story.”

“So.....uh.....anyone ever have a port?”

“Port, I've hit a few. The first night in port was always rough with lots of fireworks.”

“Hey, have you all heard from LeSubtil?”

“My step dad had a port. Are you getting one for treatments?”

“Hello all.
Glad to hear some "good" news.

I got out of the hospital last Tuesday (day +12). What a relief! My room was tiny and I was going nuts. I felt good for 2 days but on the third I was sick as can be and by the evening they convinced me to come back to the hospital ER. I really didn't want to go! I stayed another 3 days while they watched me and looked for infections and viriuses. All clear, and released again.

Today is day +20. I'm not eating very well and I stay pretty close to the bathroom, but I'm home and it's beautiful outside and I can sleep next to my Penny.

I love reading this thread. I might not write much worthwhile but I sure get a lot out of reading your posts. Anything that helps us stay strong...

Craig”

“Glad to hear you are home. It offers a comfort that a hospital can't..as well as the love of your family.

Just remember baby steps...and you will get stronger each day!!!”

“Bear, I had a port. In fact, they just took it out Monday (what a relief). There are many kinds, mine was a Neostar tunneled catheter. They installed it with "guided surgery" which was pretty cool to watch, an easy operation. It took a while to get used to 3 lumens dangling from my chest and it was kinda hard to sleep on, but it eliminated about a million needle pricks. You or your caregiver will have to learn to flush them.
Good Luck.”

“A port pic:
http://community.webshots.com/album/560298876nuKFYX

Right after that pic was taken I shaved my head.”

“Glad you're out.

Did they have to put you under for the implant? I was scheduled for surgical implantation of port but we vetoed it. But my injection site is not looking so hot.

Really don't want one but might have no choice.”

“Hospitals suck the big one, le Subtil.
Glad you are out!”

“Bear...if it means elimination of lots of needles I think it will be worth it in the end. Also, it is only temporary...keep that in mind.”

“Good luck staying out, le Subtil.

---

Port, ah ha, an Injection Port. Never heard of it previously, but it sounds great. Guess I should of looked around a little before posting. Sorry for smarting off!”

“I don't mind being stuck. I don't even mind when they miss twice. I've been stuck a lot, I've stuck 1000's of animals. I stick myself. LOL!

What I really mind is a daily, physically observable reminder that something is horribly wrong with me.

If I can avoid it, I will. But, not at the expense of my arms circulatory system. If my veins are being destroyed then I'll get a port. But nothing else will sway me.

;)”

“I understand your reasoning. I suppose after awhile you would get used to it..I'm such a wuss when it comes to needles (I haven't had a tetnus shot since 7th grade) Atleast you are keeping your mind open to options.

BTW...why have you stuck animals? Are you a vet or do you torture them?”

“I used to do testing and research. They use the same exact system on me that I used on rabbit ear veins.

Karma.”

“No, not Karma. Having cancer is not your fault BM. Cancer does not discriminate.”

“Well, that's debatable, CD. But I understand your point. I also wouldn't mind working off some bad karma anyway.

;)”

“I dare say...I don't believe in karma...! I won't get into a long explination, I'm sure you know what I mean.

Hugs Bear”

“le Subtil....good to hear you are home....the best place to be!!!!

Bear...hang in there!!!!

lots of hugs & prayers!!!!!!”

“Le subtil, Glad to hear you are out of the hospital. I hope you continue to feel better.

Bear, I had ports in 1998 and 1999. The first one was a hickman line that goes into the chest right near the heart. The other I had for radiation therapy because they used to infuse Amifostine before each radiation treatment. I liked the ports and they saved me from all the needle sticks. It was required the first time, but the one in 1999, I chose to have. Mine never got infected and caring for them was easy.

Here's an update on me.
I'm still down at University of Pennsylvania hospital and had my lung surgery Tuesday. The thoracic surgeon removed two nodules from my right lung one 9mm and the other 4mm and there's another one in there according to the CT scan that is 1mm. He couldn't find that one because it's still too small.
They just removed my lines and tubes and I'll be discharged tommorrow so I'm recovering well. I'm hiking around the halls now for exercise. :) The bad news is that the two nodules he removed he suspects are squamous cell cancer. They don't know yet if the cancer cells came from my throat or neck or if it's a primary lung cancer. I have to wait for the path report to come back because that will determine the gameplan to get rid of the cancer. I'm not surprised it turned out to be cancer, but it sucks for sure. At least it's still small so the chances of getting rid of it I think are pretty good. I'll see how it plays out once the report comes back and for now I'm looking forward to going home. I'm sore, but the pain wasn't as bad as I thought it would be.”

“So Sorry, Rich. I'll pray it's not the Big L. You want me to call them daily for results?”

“I'm praying for you, both of you.”

“Hey Lesub! Good to see you post. I've been following your progress and was going to let everyone know how you're doing. Penny's a trooper for keeping your page fresh. It's good to know what to put in a word for. I'm glad your back home. I bet you're just as handsome w/out the grey ponytail. Plus, buzzed hair feels like velveteen. =)”

“Bear, it would actually be better if it turns out to be primary lung cancer and not cancer cells that formed as a metatasis from my throat or neck. If it turns out to be a metasatic cancer I'd need chemo, but if it's primary just radiating that last tiny nodule might do the job. It's too early to say at this point and I'll have to wait and see what the report says. Hopefully, they can get rid of it without using chemo. I'd rather have another surgery or targeted radiation.”

“Damn. cancers confusing and sucks ass. Sorry.”

“RichB, I'm hoping the best for you. You are a warrior extrodinare.”

“good luck”

“Every Thursday, before treatment, I will drink uisge beatha and make a toast to us all.

To Rich, Le, mtngrl, and all who are fighting:

#&%!$ You Cancer!”

“You guys (and girls) are in my thoughts and prayers!”

“Today is day +22 post-transplant. I still can't keep any food down, or if I get it down it don't stay in long... but it sure is nice to be home. I took a 1 mile walk at the nature center yesterday that was fantastic, but it was all I could do for the whole day. Finally lost the dressing from my port, so now for the first time in 2 months I can shower normally!
Good luck people, keep up the fight.”

“I bet that shower was amazing.”