How to: Make the most of the time prior to beginning treatment

The first couple of weeks after diagnosis were spent back and forth for scans, Dr. appts. and such. Then I cleaned my house fearing the worst. Someone would see my dirty floor or cupboards. I washed walls, swept, dusted, and made sure there were not any spider webs. I just knew I would be incapiciated. I had the fear of not being able to do much. Goes back to the old thinking of chemo...throwing up constantly, no hair and generally feeling terrible. Not so. That's not to say I felt the greatest. I could do my own housework, laundry and such.

Then the shopping for snacks, juice boxes etc. This was different because I didn't buy that kind of stuff.

I also was faced with the fact that I didn't have a Power of Attorney either for medical or financial. That was always something I would do as I got older. I was 49 at the time.

I was unemployed at the time and even found a job a week after my 3rd chemo.

Scans have been clear since Oct 09. Just in a W&W mode. Looking back as I write this, it was not as bad as I imagined, but not anything I would wish on my worst enemy.

stitches87
Dx 04/09
follicular,mixed cell
stage 3-4, grade 2

A folder / organizer for medical history..test results
and notes. An appt. calendar is probly the most important place you can begin. Ask for copies of everything..you never
know when you might need it. Its the most valueable thing I own. Saves many a headache.

Power of atty and if so desired a other medical paperwork..
copies of insurance information.

Helpful shopping: Thing I needed
Jello easy to tolerate snacks
Thermometer
Tylenol
antacid
hard candies for dry mouth
Bottled water
big comfy pillow
Hemmroid relief products
non harsh mouthwash
moist wipes for bathroom

stage 4
groin/chest Follicular lymphoma
which is are a subgroup of B-cell NHL
Cytoxan/prednazone

Oversized recliner with heat/massage unit (proved to be INVALUABLE). The heat helped sooth aches and pains and the massage helped to break up thick goop in lungs that made it hard and painful to breath-could not lie flat. Large, fluffy blanket, fluffy gowns, fluffy, slippers (everything fluffy). Something to crush ice along with large thermal mug filled with water-I mixed a little grape juice in it. Like nana said, jello was a staple along with real fruit popsicles to sooth dry, sore throat. Container to barf into, wipes to clean up and chapstick for cracked lips.

Large flat screen TV, remote control, cordless phone. Basically everything to avoid getting up unless absolutely necessary. Bought tons of ginger root and sea kelp, made special broth (still in the freezer). Basically didn't want to read all those books. Can't stand the smell of ginger root. All the food I prepared, I didn't want to eat-waste of time and money for me. Jello served me best. Grape made with grape juice and cranberry made with cranberry juice was about all I could keep down.

Stage IV, marginal B zone NHL. 6 rounds of BR finished 06/08/10. Likely to have 2-3 yrs of maintenance Rituxan starting next month-currently in complete remission. Now, I'll read those cancer books I bought. I was becomming too obsessed with cancer, felt too miserable and needed a break. Educating myself and all those tests was hard enough.

Fluffy everything...I like that.
Careful with the not getting up stuff...you don't wanna end up with a blood clot so don't get carried away with the pampering.
I bought a small trash bucket...lined it with plastic bags...
wahhlahhh instand vomit cleanup....twist and toss no odors

Before starting chemo do alot of stuff out of the house- Go to movies/restaurants, plan an overnight trip, invite people over for dinner- etc. Enjoy your energy- it won't always be gone, it might be predictable, but it will lessen as treatments continue and you will need to be more careful about crowds. Also make plans to see people during treatment- you can always cancel if you want to.

This is what I had and have accumulated as treatment has started. Most of this I already had or could come up with pretty easily. I would say one of the most helpful things for me was a water bottle with a straw. Without the straw I found it harder to drink as much as I need.

For the kitchen:

foods that you like/snacks
good blender
protein powder and frozen fruit for smoothies
L-glutamine (great supplement to aid digestive tract)
a few frozen meals
lots of fluids- juices/gatorade/water/broth/soup etc.
Cookbook by Rebecca Kantz- One Bite at a Time
Calendar of appointments on fridge
dr. phone number on fridge and in cell phones
list of meds posted inside cabinet door of what you take when so anyone can bring you pills or tell a dr. what you have taken that day (prescriptions and supplements)
Smooth Move tea
stool softeners
laxatives

Office:
Bin to put hospital papers and receipts
File- bills paid
File- to be paid or payment plan stuff
File- labs/test results/x-rays
stamps and stationary/postcards/thank-you notes

Bedroom:
silk pillow cases to minimize hair loss
good pillows
thermometer on night stand

Bathroom:
moist wipes instead/addition to lots of tp
lots of tp!
natural toothpaste (less harsh on mouth)
baking soda and water for mouth rinse
tongue scraper to keep mouth clean
Eucerin body wash is gentle on skin
lotion/body oil
scar cream
sunscreen for face and body
pill cutter
hospital travel bag with travel size toothbrush/paste/soap/shampoo etc.
netti pot

Closet:
hats/beanies and scarves for head
lots of comfortable clothing with no metal/zippers
sports bra that is comfortable (no metal clasps)
good walking shoes

Everyday stuff I carry/or find useful:
water bottle with straw
small hand sanitizer
pill container (compazine,benedryl,advil if I need one when I am out)
Dr. card with # on it in purse- just in case
personal kleenex pack
baking soda in small container to mix a mouthwash anywhere I go
planner or calendar to write down appointments
paper to write down how much water and protein I have had to stay accountable to drinking enough everyday and eating enough protein!
journal- write down chemo drugs and amounts each time/questions for dr
personal journal

Also- I have hand sanitizer near the front door for when people come into the house- It might sound tacky, but people don't mind and it may keep you from unnecessary sickness.

Designate 1-2 people to help with meals/house care/rides/chemo buddies/insurance/bills

kmelick-that was an great post!
May I add yet one more?
Get yer posse together. Who can you really count on...and who will really give support. Be selfish with your energy, and only do what you like, and see people you adore.
And I love that mind exercise Ross gave in one of his many posts about elimating negative thoughts...can't remember eactly, but I put my head down, think of the bad thought, take in a breath, lift my head upwards, and let the breath and the bad thought out. all gone.

A couple of digestive/constipation remedies that have helped me are aloe vera juice (mixed with fruit juice) and most recently I have discovered Sencha Japanese Green Tea (loose leaf).

I would recommend going out as much as possible and doing what you like before starting chemo. Once you start, you are on a fairly tight schedule and balancing act, either trying to get better after chemo or trying to prepare for the next infusion.

HL Stage 2A
6 out of 8 ABVD completed
Not started radiation yet

-Paul

ooo oooo
yet one more...

I get eczema, with bleeding/cracking, in the winter on my hands, and needless to say, with treatment in summer, I find that it is just as bad. My solution-keep well moisturized, but I also found that buying some of some cheapo food handling gloves really helped cutting down the hand washing. Whether i am feeding my dogs, or giving them treats, preparing food, or general everyday handling, my hands are not longer cracking-are much smoother, and I highly recommend this!
Smiles, huggies, and prayers for all of you.

ooo oooo
yet one more...

I get eczema, with bleeding/cracking, in the winter on my hands, and needless to say, with treatment in summer, I find that it is just as bad. My solution-keep well moisturized, but I also found that buying some of some cheapo food handling gloves really helped cutting down the hand washing. Whether i am feeding my dogs, or giving them treats, preparing food, or general everyday handling, my hands are not longer cracking-are much smoother, and I highly recommend this!
Smiles, huggies, and prayers for all of you.

Add ginger to your list. Taking any form of ginger helps with taste problems. For example;make a tea with ginger powder and drink 3 cups a day.
Good luck