diagnosed with lymphoma

[ERD50]

I'm the type that does not like to be "surprised". I want to know as much as possible about a procedure that will be done to me.

That's how I feel too. I can deal with something better if I understand the bounds. Not knowing freaks me out 10x worse.

But not everyone feels as we do. DW does not want to know anything, it just makes her worry the whole time leading up to it.

They really would have a difficult job if they told you all the details.

ratface, maybe you can learn from this to make the future visits a bit more comfortable. Maybe talk with the docs and staff and try to communicate to them just how much you want to know beforehand. Like I said above, people are different in this regard and the staff is probably a little numb to it all. But if you inquire, that might trigger them to respond in a helpful way.

I don't quite accept the "ask and you shall receive" proverb, but I've found that if you don't ask, you usually don't get anything!

Good luck with the upcoming treatments, sounds like you have lots of good reasons to be optimistic.

-ERD50

 

[Amethyst]

Ratface,

I was frightened just by reading your description of the mask procedure. It sounded downright brutal. I imagined your pain and terror, on top of all you have been going through and still have to look forward to.

Although we all know medical folks are very rushed these days--given what you/your insurance company are paying, you deserve a technical explanation of every procedure, if only to show respect for you as a smart, thinking, feeling patient. Can you speak privately to your oncologist about how you feel you are being treated - he/she needs to ensure your emotional health is being looked after, because it's important to your recovery!

 

[Urchina]

Ratface,

I am so sorry about your diagnosis, but so glad you have some answers, a path to follow, and people to go with you on the journey. Hang in there, take care of you and yours, and have faith.

Keep us posted so we can send more encouragement!

Also, my favorite Yiddish proverb (cause it's the only Yiddish one I know!): "God gives burdens, also shoulders." This is akin to the one Vicente posted "God squeezes but does not strangle." May your shoulders be broad and your breathing easy!

Oh, and two more ideas that might help (or might not, I haven't been where you are):

One, ask for what you need to be comfortable during your treatments. When I give blood (as often as possible), I ask for a warm water bottle, a cozy blanket and a magazine. When I'm sitting next to the 85-year-old WWII vet who's barreling through his donation with nothing I look like a sissy, but my blood is just as useful as his to the person who receives it. The coddling during the donation helps me donate, and that helps someone else. So don't be afraid to ask for warm blankets, a favorite movie, a book, music you like, a preferred doc or nurse, whatever, if it makes it easier to get through the process.

Two, ask if there are other things you can do to support your treatment. These may include things like yoga, meditation, or prayer; diet; exercise; acupuncture, etc. Some might be useful for you; some might not. Your care providers can probably help you decide if any of this would be helpful.

Best wishes & Good luck!

 

[freebird5825]

Hey Ratface...I just read through the posts on this thread that I missed while I was away.
I have never experienced what you are facing, so I can't say anything about that.
What I can do is wish you strength and compliment you on your courage (yes, it's in there between the lines) in dealing with the diagnosis and the procedures.
I'm rootin' for ya!

 

[modhatter]

A little late seeing this Post as I have not visited site for a while. I have lymphoma, but my diognoses was not nearly as good as yours. I was diognosed with two lymphoma cancers, the agrressive B Cell (possibly transformed) and regular folicular, which is not curable. Mine had spread throughout my entire body, and my classifications the worst on every front. It will be two years the end of November since I finished my treatment. I get another scan in about a month. But so far, so good.

Your diognoses believe it or not is a good one, and you should be fine after treatment, so don't lose a lot of sleep over it. Another good site is the Lymphoma Survival. It requires a membership of $35 a year, but well worth it. The guy that started it has folicular, and has lasted a very long time through what they refer as life strategy. This envolves doing everything possible for your self in addition to modern treatment to slow the reaccurance.

If you have any questions that I can answer, please don't hesitate to ask. I know what your going through. I had just purchased a house and renovated it in Mexico, and was getting ready to retire to Mexico when I got my diognoses. I then had to sell my house, after I finished treatment and got well enough to deal with it. It's quite a shock and an adjustment that will take you a while to get through. But again, yours is more localized and treatable than mine, so you should be able to resume your lifestyle in due time.

 

[Amethyst]

What a nice post, modhatter. Downright tragic that you got your diagnosis just as you were getting ready to retire and live your dream. There are lessons in your post for everyone, not only Ratface. Bravo for taking care of yourself and beating your disease for this long.

 

[bright eyed]

Wow what a thread - i haven't been around much - but glad i got through this one -

Ratface, you have my sympathies for the challenges you face ahead of you - but I have to say you have handled it all remarkably well and your courage, humor and honesty will serve you well!

One thing I've learned in my short life is that worrying is not that useful an emotion - so while it is natural and you shouldn't suppress it - try not to dwell on it! Each step is just more information for you to make choices about how you want to handle that bit of information. Some people don't have the diagnosis or the resources to have those choices, so even as the news is daunting, you are in a good place (and well loved! even better!).

best wishes to you on this journey and keep us posted!

 

[ratface]

Just got back home last night from an overnight in the hospital for three surgical procedures: The G-tube-feeding tube,inserted in the stomach. The IV power port for meds and a biopsy of the base of the tongue. The first two were done together and by far the worst is the G-tube. I literary was unable to move but tiny bits while lying in bed. You just acceapt the position your in,because it's too painful to stretch anything. Had me on codeine which was doing nothing. Asked for something stronger and was put on morphine. About twelve hours later I was off the meds and could get out of bed and walk around. No meds now and no real pain as I sit at the computer now. Home health nurse was here this am and changed the dressings and taught DW and I how to operate the feeding tube. I'm begining to feel robotic with all these ports and tubes. Didn't know I can't pass through electronic screening at airports, something with the power port. Someday we will be plugging ourselves into our home computers. I start chemo tomorrow through my brand new power port and radiation on Monday. What a joy to have a bowel of chicken broth last night. Today I advance to pudding, or rice, and jello. Tomorrow who knows? Thanks all again for keeping my spirits up.

 

[REWahoo]

Ratface, you're becoming the bionic man!

Keep your spirits up and have faith that things will get better.

 

[ls99]

Most impressive handling of tough deal. Keep the good attitude, I know in my DW's case it was of immense help. She is doing very well now. You will too.

 

[Alan]

Someday we will be plugging ourselves into our home computers.

That's a great image - as well as USB ports we'll need IV ports.

Keep up the high spirits, your posts are inspirational

 

[Dawg52]

Most impressive handling of tough deal. Keep the good attitude, I know in my DW's case it was of immense help. She is doing very well now. You will too.

Yeah, looks like you are doing great. Keep up the good attitude and you will be fine. Hard to see the light at the end of the tunnel right now, but it is just a few months down the road. 2010 will be a better year.

 

[FinallyRetired]

Congrats for getting through the next phase. I can tell from your tone it wasn't quite as bad as the mask, or maybe you're able to take more. In either case, that's progress, so here's hoping a beer will not be too far in the future.

 

[2soon2tell]

Ratface,

I'm very late coming to this thread but you are in my thoughts and prayers. During times this these your faith, family and friends are what keeps you going.

I am 2 1/2 year pancreatic cancer survivor and endured surgery, radiation and chemo to kill the beast. They say tough times don't last but tough people do so keep fighting the good fight.

2soon2tell

 

[ratface]

I am 2 1/2 year pancreatic cancer survivor and endured surgery, radiation and chemo to kill the beast. They say tough times don't last but tough people do so keep fighting the good fight.

2soon2tell

Hence the name.Wow what a fight you've been fighting. I can begin to understand. I start round 1 in the morning. Thanks for letting that side of you out, truely means a lot to me.

 

[Urchina]

Pistachio-flavored pudding from Jell-O! My favorite!

It will get better. Rooting for you...

 

[vicente solano]

Ratface: You are behaving like a trooper. And, as somebody said, the way you are tackling your problem is really exemplary. We, in Spain, have a saying that goes somewhat like "Let´s pray God doesn´t send us all that we can bear". I think He has sent you plenty already. I pray for Him to give you a rest! Or better still-to consider that you have passed all the ordeals and so let you ER as you deserve!

 

[freebird5825]

Pistachio-flavored pudding from Jell-O! My favorite!

It will get better. Rooting for you...

Try this: Instant mashed potatoes made per box directions, place in small ceramic casserole, cover with American cheese slices and bake until top is bubbly and slightly browned. Easy to make, easy to digest and very filling.

 

[ratface]

Got to chemo early as we get to everything early. First ones in. Had blood drawn as a baseline for future comparisons. Technician said we could sit where ever we want. Down the hall there are a dozen grey recliners in a row. Each has its own mini TV and of course all those IV gizmos. We sit at the first one. DW is sitting next to me. In walks a gentleman some years older than me and serves himself a cup of coffee. He chooses the booth/chair directly in front of the coffee and snack table. There is wisdom here. I stare down the hall as the chairs start to fill. It strikes me that cancer is just routine for so many people. I have read that there are appx. 130 different types and about 1 out of 3 people get some form of cancer. I never would have thought of it as routine! Well my treatment starts with a bag of saline through the power port. About 1 hour. Then a small bag of some anti vomit medicine. Then a small test bag of my particular chemo drug. Then another hour of saline. Then an another hour of a full bag of chemo drug and then another saline. This is a 21 day dose. two more of these. This morning I'm just grateful it's Saturday and don't have a doctors appt which is good because I feel like crap. I didn't expect the fatigue so soon. Feel nausea and light headed and did I say tired. Did not want coffee which I have drank everyday of my life and it didn't bother me. I'm a little better now, went for a short walk with DW and that helped some. Well thank-god tomorrow is Sunday because Monday is radiation.

 

[shoe]

Good thoughts in your direction ratface.

 

[bbbamI]

You're on our minds ratface...take it one day at a time....

 

[Amethyst]

I didn't expect the fatigue so soon. Feel nausea and light headed and did I say tired. Well thank-god tomorrow is Sunday because Monday is radiation.

Ratface,

Thanks for the update. The rest of us are listening to your experiences and praying that the "slash, burn and poison" routine gets all the creepy-crawlies out of your system once and for all.

Amethyst

 

[Moemg]

Ratface , I have worked with a lot of patients facing chemo and radiation and I'd have to say the secret is in maintaining a positive attitude which you and the others who have spoke of their Cancer have .

 

[ratface]

I've got to say that I'm going in a bad direction. Depression is setting in and I can not get much sleep. It's amazing how fast the body can go south. I've tried OTC sleep aids but they do nothing.

 

[Dawg52]

I've got to say that I'm going in a bad direction. Depression is setting in and I can not get much sleep. It's amazing how fast the body can go south. I've tried OTC sleep aids but they do nothing.

I've never been through it but I would suspect a little depression comes with the territory. But try not to wallow in it. Find a good uplifting book to read. Have a cup of coffee with your best friend. Smell the roses. Easier said than done but don't let it get you down.

Talk to your doc about your sleeping problem. Maybe he can prescribe something. Hang in there man!