I'm convinced that laughter really does help boost your immune system. And EAT - as hard as it might be, it's so important. I finally convinced my sister to get her medical marijuana card, hoping it will help her de-stress and re-gain her appetite.

Meanwhile I'll keep you in my thoughts and send those 'healing vibes' your way.

Always wonder if that is a good thing or a bad thing.

Thank you, Siwsan.

I've lost 15 pounds and they aren't pleased but I am trying to eat and I do eat as much as I can.

I do have to do better though. The nausea pills have helped and over the last few days I have managed more food than before the pills.

I hope your sister can eat now. Sending her my best!

I'll try it.

http://rdoc.org.uk/eve/forums/a/tpc/f/19510549/m/4751003203

Evidently the docs can tell that it's working if the rash is present; if you don't get the rash, it's not doing the job as intended. The rash can be mild to severe, with the most common reactions being dry skin, cracked fingers (from the dry skin), and blistery pimples. The rash can be from the waist up but is usually on the face and neck or from the chest up. You can use Aquaphor Healing Ointment, Benadryl spray, or if necessary, a prescription medication, Metronidazle. Head and Shoulders shampoo helps as it has a numbing agent. Sometimes the lips and tongue get raw. Let's see....What else? Sometimes you can get flu like symptoms after the first infusion or two but they go away. As treatment goes on, the rashes get worse, but once treatment is over, you'll clear up rather quickly (two people she spoke to said it cleared up within two weeks).

It is a prescription anti-nausea patch that you wear behind your ear for up to 3 days before replacing it. My family has strong reactions to anesthesia, so they wrote me a script for one to wear for my mastectomies. I don't know if anesthesia makes me sick, but morphine sure does - and this got me through the hospital stay with the drip.

Because seriously - I don't think I could choke down a "nausea pill" if I was already queasy. What an oxymoron!

Keeping you in my thoughts - hang in there!

I go ahead and take 2 in the AM because the nausea starts within the first hour of waking. This mainly happens for the first few days after the Chemo. Just as I'm feeling some relief from the nausea it is time to do Chemo again. Vicious cycle.

I'm trying to eat several small meals like they suggested. Some days though, food is the enemy. It stinks, taste bad, and it hurts my tongue.

I started with an occupational therapist today. She is working with me on massages to help drain my lymphatic system. Fun, fun.

Ugh. Double recommend you ask then - this thing is a small dot that stays on your skin for 72 hours and there is none of that waking sick feeling. That said, what they are giving you may be WAY more potent if they didn't offer this as an option.

Glad to hear that they are working on keeping your lymph system pumped. Unlike the blood system, the lymph had no pump (heart) to keep it moving, and it can clog easily if movement and gravity don't kick in - those two are what keeps the pipes flushing. My favorite part of physical therapy was the lymph massages and exercises. I can now sense when I am blocked (or sluggish) and when everything is flowing. In one session, I even felt/heard the flush when she massaged out a blockage. It sounded like a hose un-kinking and felt COLD as all get out when the fluid ran. Felt like I was walking on air for days afterward!

Well, I pretty much stay sick during that time if I don't take those pills. I take 2 pills twice a day. Then it gets better...just in time for another dose of Chemo.

I got exercises to do on my own and she will be massaging me twice a week. Working on the lymph fluids and breaking up scar tissue. She has this massage machine that looks interesting. She said people tend to fall asleep because it relaxes them so. I am learning to enjoy naps again.

After my first round, I kept saying "evil gremlins had taken over my body". Mouth sores, hair falling out, nausea, strange reactions to smells, a rash on my stomach and then my neck and chest, migraines and the final "surprise"- my face breaking out with what looked like acne. I was pretty miserable- but did my best to keep sane and not loose my sense of humor.

But it got better- it really did! As time went by, most of the symptoms went awayI walked almost daily (some times not more then 20 minutes), meditated, wrote in my journal (PM me and I will send you the link), ate lots of (non meat) protein and smoked (or ingested) a good amount of weed. The medications (antibiotic and acyclovir for mouth sores) eventually kicked in and I guess my body adjusted. Ate a lot of Ben & Jerry's frozen yogurt too! Still do actually...

It will get better! And in the meantime, I send a hug to you fellow warrior! Please take care of you- find things you enjoy doing, places/settings that make you feel peaceful and people who make you smile and fill you with love. You can do this!

I've been sucking on those kiddie freeze pops. Helps a little.

I just want my face back to its normal boring self.

Thanks, KaryninMiami.

You're in my thoughts and prayers dear friend, stay strong and keep your great sense of humor it will help you get through this.
And know you're truly beautiful inside and out despite those low times you don't feel that way, You Are!

How are you?

Thank you!

You would think after all those eye drops after cataract surgery would of helped keep infections away longer but I've had such problems with infections even before the surgery while trying to balance out on thyroid hormones. Hypothyroidism causes inflammation and for my dry eye, I'm on Restasis.

But has you know, I am so grateful to be seeing again. And truly enjoy the wonderful photography you do!

And Thank You for the kind words of support my friend in between my surgeries, you are such an angel.

Will the infections eventually become fewer? (with the meds) I hope so!

I know I'm already tired of the all additional medicines.

I do remember the time when my husband's white blood count was at zero, all expected by the docs in the course of treatment. It was a good thing, still scary though and he could not go anywhere without a mask and gloves. Even in NYC we received looks from people on the street, he left the protected environment of Hope Lodge infrequently, mostly to a docs visit at Memorial Sloan Kettering.

Sounds as if you are 'on track' as to what they expect. Continued best wishes for being an on track and a 'boring' patient.

Keep your eye on the end game. I can only relate my husband's experience, he said food tasted as if he was eating a paper bag, but he knew he had to do it if he was to move forward.

In the big picture, you just need to take small steps

Made from poor grade lumber to boot.

That's what the majority of foods taste like to me right now.

I watch people get transfusions while I'm in Chemo and wonder when my turn will come. I hope it doesn't but I don't know if it will and can't say for certain it won't.

I'm trying to eat and when I can't I'm drinking my meals.

I miss food. The taste of it.

The pleasure a simple tomato sandwich can bring.

I'm whining. lol

Sorry.


Thanks!!

I think the simple pleasures will come back, but when one is waiting I am sure it seems like an eternity. Transfusions can be a life saver and hopefully you'll never need them, but if you do, they can be part of the healing/moving forward process.

IMHO better to 'whine' a little here, everyone needs to do that at some point.

Drink, eat and continue to move when you can ... and a little smile never hurts.

Continued best wishes

My first round was horrible and I told doc I was considering quitting. He offered a lowered dose as an alternative and rounds 2&3 were easy. Rounds 4 & 5, I had the runs in a big way and for rounds 6&7, he lowered dose again. That helped. In two days, round 8 begins.

Doc said the lowered dose wouldn't make a difference in the results of the chemo (which aren't definite, anyhow).

I swore that if the chemo made me too sick, I wouldn't continue. It now looks like I'll get through all 12 rounds, if I can afford my share of the last ones.

Just a few sick days and the pills help with the nausea. I only get chemo once a week, so that has to cut down on the bad side effects.

It's the radiation kicking my butt. (mostly) I noticed a burn on my neck today.

I hope you get all 12 rounds....that you can get everything you need to survive and thrive.

This is the post I found. My heart goes out to you, as I said you will remain on my mind!!
I am getting ready to post a few bird photos from the rain forest with the photo folks - dedicated to you.
Will be home from the 14th to the 18th, then off to Frankfurt. My Mom has taken a turn for the very worst.
Hugs to you!!!

Sending my best to you and your Mom!

Please keep me posted!!