I am terrified of chemotherapy

I showed up and had 2nd round of chemo today. Doc backed it down by 10% because it kicked my WBC way too low first go around. Having Neulasta injection tomorrow instead of waiting a week like last time. So figuring that the flu-like symptoms will be with me this weekend and will need to lay low.

He had no concrete idea on why the headaches lasted so long and were so severe. Said Aloxi was out of my system fast and didn't see Decadron as the culprit. Also thought chemo had cleared before or close to onset and maybe Neulasta was part of the issue, but usually causes bone or chest pain. So he suggested that it could have been a virus that got hold of me during that rock bottom WBC and it just had to run it's course. We'll see if that's credible this go around.

Regardless, he gave me script for Oxycodone to use if 2 extra strength Tylenol won't do the job. So I can rot my liver or...I don't do well with any pain meds so am very apprehensive about Oxycodone. Pharmacist made sure the tablets are scored so I can cut them in half and start out smaller if I decide to take them. She recommended taking at night first time and said a stool softener would be totally necessary throughout if I go the pain-med route.Just another lovely issue to consider now. The treatment for one SE causes more SE's. Great.

It's about 11 hrs since end of infusion and true to the last time, I'm feeling OK. Drinking tons and peeing most of it out but I can see ankles swelling. Trying to stay away from salt (which is all I crave) and added 99mg potassium tab to daily intake. Already had leg and foot cramps starting 10 days ago.

And true to form, I've had a load of calls in the last 48 hours for business this next few days, Figures. Am taking a take a deep breath and praying headaches stay away and I'll be at least semi-functional and able to meet or at least deal with clients via phone and Internet. A big part of all of my apprehension isn't just the physical and emotional...it's the financial. I have to work to live and the SE's just don't make that easy.

Onward and upward, as they say., I will do this but still say Chemo isn't for sissies.

When life hands you lemons, throw them back and demand chocolate. I'm demanding dark chocolate!   Bon

Day 6 into 2nd chemo dosing. Day of tx wasn't eventful, just long wait to have 5 bags infused at reasonable rate. Chemo was reduced by 10% this time and Neulasta give day after, instead of waiting a week. WBC was up but all other blood cells gone, gone, gone.  Told to eat red meat...sure, just what I wanted the day after chemo. I am not a meat eater...but guess maybe next week I will be. 

Indigestion persists, even with Protonix. Day 2-4 ravenous for carbs. Thank the Lord for a mac and cheese and Nabisco for Sugar Wafers. And salt. Chicken soup is still good for the soul. Need strong flavors since most stuff tastes like metal, liberally rubbed down with bug spray.

Hydrated so much that finally hit the wall with plain or fortified water and can't take another sip. Now it hits my stomach like lead. Have been doing cranberry juice diluted with sparkling water or tonic, flavored H2O's, decaffeinated green tea, Popsicles.

Trying to stay focused on this goal. Need to get to the end of this chemo stuff before I panic about the future. Had a difficult weekend after reading prognosis for ER-,PR- tumors. Did give myself a break and now know that even if I'd found this lump sooner, the situation would have been the same. For me, it's not the size, shape, placement or timing that matters. It's the lack of hormone receptors. Not a good prognosis in the long haul. But I have to get through this 'short' haul first. 

I am now feeling nearly human on day 7 after 2nd round of TCH. I've been hugging the sofa and trying to keep the SEs at bay. This time I think I was fully hydrated before, during and after the infusions and I avoided the debilitating headache. What a blessing to be able to breathe without wincing this time around.

Can't do water or fortified water any more. It just hit my stomach like lead by day 3 and was making me sicker. So I switched to flavored waters, decaf green tea, diluted juices, flat ginger ale. Even Popsicles. All gave me the fluid I needed and stayed down. That's more than half the battle. If you can't keep it in, it can't help.

So I'm eating and drinking whatever tastes, smells or sounds good to me. To heck with the healthy eating thing. Chemo is poison, after all, so right now I can't believe that favor additives, enhancers and the like will do me more damage today. I'm taking B-vitamins, Protonix for reflux, probiotics, fish oil and cinnamon, a bit of potassium to replace a fraction of what I'm losing with the drink and pee fest I've got going on here.

Did get a brief outing this morning and was able to walk on the beach for about 15 minutes. That's the first time I've been out in 7 days. It was fantastic and now it's my goal to go again in a few days when I'm not still so wobbly. Tromping through sand is tough enough. Tromping through sand in a chemo stagger is comical.

Sidebar...still have stubble on my head. Not totally bald yet. Using the sticky tape lint roller every day and wanting it to all be gone soon so it can start growing back! Oh, wore my Brett Michaels hat/wig to the beach today. Looked OK and stayed on in the wind. That thing is genius.

WHAT I'VE LEARNED ABOUT CHEMOTHERAPY SO FAR...

(either on my own, through this website's various forums or from friends and family...and in no particular order)

- Chemotherapy is not for sissies.

- There are an infinite number of chemo chemicals and almost as many different regimens for administration. Your plan for chemo will probably be different from that of someone else going through a similar situation. It is individually tailored to your needs. One isn't better that the other. It's just different.

-You have to trust your medical oncologist and the nurses administering the drugs. If you don't, move on. There are plenty of doctors and chemo centers who can do this important job for you. Remember those words...for you.

- The number of side effects are endless. Not all of them will happen to you.

- Everyone's experience with chemo is different. Some breeze through. Others have to tough it out. Whatever the case for you, take a deep breath and look ahead to better times. You can't fail chemotherapy. It isn't a test of your mettle. It's just something you have to do to keep cancer away.

- Keep up with fluids. Drink, drink, drink. It helps to flush the chemo out and keep your body functioning. I can't stress this enough.  Stay hydrated all the time.  Keep drinking and peeing.

- Avoid caffeine and alcohol.  Water is good but flavored waters, dilute juices, even Popsicles, may keep you interested and that's the point. 

-Be prepared for anything. Everyone reacts differently and the side effects and symptoms change over the course of your treatment. What was yesterday, may not be today or tomorrow.

- Ask about a port for infusion of the chemo. Get the facts about how it works and how it is inserted.

- Talk to your medical oncologist about having a supply of medications for indigestion, constipation, diarrhea, allergy, pain, nausea, etc. You may not need any of them, but having them on hand can't hurt. And don't take anything your doc hasn't authorized.

- Take some form of probiotics to aid with digestion.  You can get it on many forms...even in yogurt now.

- If you have nausea or indigestion, you can't eat. Don't let either get hold of you.

- You'll be more tired than normal. Rest as much as you can. Napping is not just for children.  Get an eye mask to block out the light, which helps with melatonin production.

- Have plenty of tissues and toilet paper on hand and keep pre-moistened wipes in the bathroom.

- Chemotherapy is my friend, not my enemy. Cancer is the enemy and chemo is my protection against a recurrence. It's cancer that has disrubted my life. The chemo is helping me get it back.

- It is emotional to lose your hair. And yes, at least 50% of the advertisements you see on TV or in print have to do with hair.

- Buzz your hair off before it falls out in clumps. Don't clip it closer that a #2 setting.

-  Use a sticky-tape lint roller to deal with the stubble left on your head. It gets the prickly ones out and keeps your desk, pillow, table top, etc. from being 'dusted' with short hairs.

-  Wigs are hot. In winter that may be a good thing. In summer it's just one more thing to gripe about.  Try wearing one with a head band. You'll be amazed how much that helps do away with the wiggy look.

- An organization called The Gaila Fund gives free, luxurious hat-type wraps to cancer patients.  Fill in the request form at http://www.gailafund.org/

- Wash your hands. Wash your hands. Wash your hands.

- Buy a supply of hand sanitizer in various sizes, place it all over the house, carry some with you, and use it. 

- Ask your doctor before taking any supplements...I found that Vitamin B complex, a small dose of Potassium, Fish Oil, Cinnamon work for me. And Metamucil.

- Do try to eat some vegetables and red meat. I know it doesn't sound appetizing, but on days when you are actually hungry, try to get those in at least one meal. They will help rebuild your blood.

- Now is not a time to diet. Eat whatever you can. I crave Nabisco Sugar Wafers, macaroni and cheese, and chicken soup. Now I'm getting tired of soup.

- My OPINION:  this isn't a time to worry about healthy eating, staying organic, or avoiding chemicals in foods. Chemotherapy is a series of poisons being infused right into your veins. It makes no sense whatsoever during this process to rigorously avoid flavor enhances, food dyes or additives. You have to eat to keep up your strength and if it looks, sounds and tastes good to you, eat it, additives and all. 

- Fresh fruits and vegetables should be totally avoided in restaurants and used with caution at home. They are difficult to clean and could be contaminated with bacteria or fungus that you can't ward off while so immunosuppressed on chemo. If you must, and I MUST have lettuce, soak the veg in cold water with just a drop of bleach. Let it soak for a few minutes, agitate, and thoroughly dry in a salad spinner and then on paper towel before refrigerating. And wash the rind of all fruits and veggies before peeing them to avoid contamination from the skin through to the actual fruit.

- Smell everything before you taste it or have someone else verify that the food or drink is fit to eat...chemo makes your taste buds wacky and nothing tastes just right, good or bad. And if something is spoiled, you might not know just based on taste. I used spoiled milk on my cereal and couldn't tell by the taste at all.  Only discovered it when I bent down to pick my napkin off the floor and my nose caught a whiff of the rotten milk.

- I was told not to dig in the garden or handle fresh flowers while immunosuppressed. Both could harbor fungus, bacteria or biting insects that could cause unnecessary trouble.

- Sing along to a happy song.  Anything that is upbeat, moves your diaphragm, increases your air flow and gets you smiling is great. I prefer a rousing chorus of anything from Mama Mia.

 - Carry a note pad and write things down. There's lots of information to absorb when you're faced with chemotherapy. Write down what you're told, what you need to remember and whatever questions you need to ask on your next visit with the oncologist.

- Don't get too much sun. Let it shine on you for a minute or two...it will boost your spirits. But don't stay in the sun and make sure to wear sunscreen and protective head coverings whenever you're out.

- Clorox has a solid surface cleaning and disinfectant spray. I have multiple bottles and use it in my floor steamer for an added punch.

- Ask questions. Don't be afraid to speak up. Ask away. Ask your docs, ask on this blogsite, ask anyone who might be able to give you the answer. I even phoned the manufacturer of a chemo drug to get clarification about the patient information they supplied. This is your life's journey..get the 'direction' you need. Ask, ask, ask.

- Learn to say "Thank you anyway, but NO ..."  and  "YES, thank you, I would like some help".  Use them both for whatever fits. You have to be good to you and most people really want to help. They just need to be told how, when and what.

- Audio books are a blessing when you just can't concentrate enough to read or don't want to keep your eyes open. Most local libraries have loads of them you can borrow for free.

- Have an attitude of gratitude.  Be grateful for every little thing anyone and everyone does for you.  All gestures, big and small, are to be appreciated, cherished and remembered. Some day you can pay it forward with a card, a meal, a call, mail or a gift delivered to the door, a ride, a prayer, a shawl, a helping hand, a shoulder to lean or cry on.

 - Surf sounds are so incredibly soothing.  Find a download or CD of ocean waves and lull yourself into total relaxation.  I even found a CD of just wind chimes that are also very calming to listen to.

- Stay away from crowds and anyone who may be contagious. Easier said than done, but your immune system is very compromised by chemo and you can't fight viruses and bacteria effectively. If you don't have to go to that movie, lecture, sermon, flea market, art show, convention, etc., don't go. It's not worth the risk. There will be plenty more events to attend when you are physically stronger.

- Applesauce helps to get all your pills down when it's difficult to swallow. Put your tablets or capsules in a small dish of unsweetened applesauce and spoon them down slowly. It works for kids so why not for you?

- Drawing on two evenly positioned eyebrows is harder than you'd think.  Avon has Glimmersticks eyebrow pencils that go on smoothly and stay on all day, even in humidity. 

- Aromas can soothe or energize. Pick a scent you like and take a minute to savor it. Use it when you need a pick-me-up or to wind down.

- As soon as you're feeling up to it, take a short walk. Try to do it every day, even if it's just around the yard, down the hallway, up the block. A little fresh air is beneficial, but don't go outdoors if the air quality is poor.

- Use a good moisturizing body wash every day and then lather on the moisturizing lotion a couple times a day. There are so many nice clean scents now that it's fun to pick and choose them and enjoyable to use them.

- Don't forget to moisturize your hands and feet every night at bedtime. Cuticles and nails take a beating during chemo.

- If you are having a manicure or pedicure, take your own 'tools' along to minimize the risk of infection.  And tell the manicurist to work gently to prevent nicks, cuts and abrasions.

- Revlon's Post Trauma Nail Treatment might help preserve and/or repair your nails. And don't forget to oil your cuticles nightly. 

- Brush your teeth 5 times a day. It will help take the nasty tastes away and keep your teeth and gums healthy during the chemo challenge.

- If you have dry mouth or get mouth sores, try Biotene mouthwash, toothpaste and gum.

- If you don't feel like talking when the phone rings, don't answer it. Save your strength until you want to chat.

- If you are shaky, don't drive. Find a ride. Call the American Cancer Society to arrange for transportation services ahead of time or call a friend. But don't drive.  D-U-I-C... driving under the influence of chemo... can be as dangerous as drunk driving.

- Chemo fog is real. If you aren't thinking clearly don't sign contracts, write checks, pay bills, use power tools. Whatever it is can wait or you can ask someone to help you with it.

- Laugh. Watch, listen or read something to keep you laughing every day.  It's necessary to promote good mental and physical health. Have at least one belly laugh every two hours.  Laugh, laugh, laugh.

- Breastcancer.org is my lifeline. The scientific information on this site and the blog forums with women going through the same or similar experiences is what made all the difference for me. May they all be well. 

- You don't have to be brave. You just have to show up. 

Terri, I am humbled by your experience and grateful for your encouragement, especially in light of what you have faced. I know I can do this, I just have to embrace chemo as my friend. Until now I've been looking at both cancer and chemo as the enemy...all evil stuff. Now I see it differently.Thank you.

My symptoms on chemo arn't nearly as outrageous as some of the other poor women I hear about. But when they are happening it's difficult to be grateful that something rates a 6 on the annoyance scale rather than a 10. Still, I'm learning to be grateful when each SE isn't as bad as the last time around.

My prayers are for your continued stability and for your enjoyment of life. My sincerest thanks for writing.  Hugs to you, back.  Bon

Platinum 111...WOW!  Fantastic news for you and for the rest of us, too. I celebrate your victory! I'm so thrilled for you.

Thanks for writing and telling of your trials and success. It helps me look forward more positively and I know it will help everyone else who reads along on this forum. 

Hugs and cheers...here's to your continued good health.