I have cancer! Finding a surgeon!
If you are not fortunate to live by a major university hospital or cancer center, it may be worth the trip. You only want to have one surgery. In ovarian cancer, the surgery is called Debulking. They take everything they can out which has cancer. A good first surgery can prevent a second. My goal was to get the chief of surgery to operate. I had multiple appointments, recorded the conversations, took 2 people besides myself to take notes, and asked as many questions that I could think about. Even though the approaches were all similar, I chose my surgeon based on his life philosophy which is similar to mine. I think you know if you find the right surgeon. With a university hospital or major cancer center, they will run all the right tests on the specimen whether genetic or chemo sensitivity. Also, they will have the newest drugs, more clinical trials, and have tumor boards which approach your cancer with many minds.
After surgery, what is next: HEALING
The key for me was getting my strength up which included walking and physical therapy. If your insurance covers home healthcare, then do it! This could be your ticket to getting chemo sooner rather than later.
I only have two arms, how will I get my chemo? Get a port!
if your doc orders a 6 cycle (6 month) of chemo, it is so much easier with a port. My port is an xcela port which can be used for all blood draws and even scans with contrasts. Don't do what I did and waited too long so my veins were abused by much of the chemo. Many chemo drugs can burn the veins or even hurt, if you have a port this isn't the case. Bottom line, do what is best for you.
The notebook, the binder, your coffee table book of all things for your cancer: Don't leave home without it.
For many reasons some more obvious than others, you MUST keep a record of all scans, tests, lab orders, and business cards from anyone and everyone. You have to be the authority on your history. Your oncologist has hundreds or more patients, he/she remembers the important facts, but you need to have the info at your finger tips. You need to know your counts (especially if you want to exit your house safely without picking up a germ/illness) and you need to know your orders. Besides all this, you must take control of your treatment. There are just too many people who have cancer and you need to be your oncologists priority. Knowledge is power. It is the power to stay alive and have a plan for today and for tomorrow. It is all overwhelming and frightening, but little by little you will gain your understanding. You cannot do this alone. Even if you think you are "type A", organizer extraordinary super power, or feel that too much info would be a burden on those you love, you are WRONG. Those who love you can help you and help you survive. Allow people to help you in any way you think.
I've got cancer and now I'm going to lose my hair...now what?
How to guide for hair loss:
the statement "It's only hair" said when your hair starts clumping out does not make you feel better. Take it from someone who knows. I've lost my hair and had my hair grow back more times than I choose to remember. I also had hair thinning and had to do the old man comb over. Hair is personal, but eyebrows are even more personal. Unless you are into some type of self torture, cut your hair short first. Once the clumps start falling out, have a friend shave your head. It is much better with tiny hairs falling into your food then big clumps of hair left on a jacket. It is also not nice to wake up to a pile of hair on your pillow. The positives of hair loss especially in the summer are that no shaving is required, plus it is a great feeling to never have a bad hair day. I have a child, so for me it was important to me to have some normalcy, so I bought a wig with real hair that was a good match for my "pre cancer " hair. No more bad hair days. Now, in the event that it is winter, then I recommend purchasing a cotton cap for sleeping. I am not a head wrap, scarf type of person. More power to you, if you can look good. I am just not that coordinated. Use gentle shampoo on your bald head or even soap like cetaphil. Your skin will be sensitive if not for the hair loss, but from the chemo. My hair and scalp hurt before it started the rain shower of hair. This could just be me, but it was my warning sign. The other hair loss occurs down there. Welcome to your pre-pubscent self. (or for you Brazilian wax fans, money saved here) Finally, there are no more nasal hairs, so cold air will hurt. Plus, no more eyelashes (you should look around, many people have few eyelashes or few visible eye lashes), and finally no eyebrows.The eyebrows are what bothered me the most. For me, eyebrows show an expression to your face (surprised, angry, happy...). Without them, I felt really naked. there is a solution. Purchase an Anastasia eyebrow kit at sephora.com. I am not coordinated and even I could stencil my eyebrows in. There are also classes for make up with free samples at local hospitals but they were never offered when I was experiencing a rain shower of hair.
Recommendation: buy a real hair wig (check with your insurance, since most will cover a portion or all of it: cranial prosthesis), buy cotton caps, sephora for anastasia kit, cetaphil or gentle cleanser on scalp. eyeliner for missing eyelashes.
Look beautiful classes at area hospital sponsored by American Cancer Society. FREE makeup!
Going to chemo camp or visiting the closet! Packing your bag for your "trip". Dress for success or don't wear your pajamas even though you will want to.
Some questions to ask are criticial to you having an enjoyable trip to chemo camp, chemo land, or chemo closet. Does your infusion center have doctors on site (some do not), are you allowed to have visitors (ask how many whether or not you have chemo brain yet, you need another set of ears to hear what they are telling you and another voice when you may lose yours because of fatigue or other drug related reasons), is there food available close by to purchase, are their volunteers staffed to help you get magazines, drinks, warm blankets (if they don't have blankets, bring your own), and snacks. Are there tvs and WIFI? If there isn't wifi, you can solve this issue by having a wifi tether on your phone. Bring an iPad, kindle, mp3 player or whatever can keep your mind occupied. (even a magazine). Back to the visitor, bring a friend who makes you laugh, partner to hold your hand, or relative who will not add their opinion, but be your advocate and your cheerleader. Keep in mind, the chemo land is not for the weak and not everyone can handle what you are about to see. It is scary and the visuals are often too much to bear. This is why you need an iPad or something to keep you distracted. Going to an infusion is like being in the hospital. You must question every step of the way. What drug are you getting, how much, what is it for, what are the side effects? You can ask for a copy of the order. Mistakes can happen, so it is up to you to avoid them if possible. Learn to understand what dose of premeds you need. Drugs can be exchanged for pills instead of IV or different drugs. If one isn't doing the trick, there is another one to try. For example, steroids are often given so you can tolerate the chemo better. Steroids mask the real effects of chemo and keep you up all night. Then, they wear off and you crash. Often the dosage of steroids can be changed. Plus, the drugs for anti nausea can be Zofran or Aloxi in the IV. You can also get Benadryl but it either puts you to sleep or makes you hyper. Note if you don't have a port, you will need to wheel your IV pole to the bathroom which requires one-handed off/on of pants.
Recommendation: Ask, ask, ask, and take notes! Accessorize, find your signature "look" !
I'm nauseous, now what? Don't chase your nausea, it's a race that will end in the bathroom.
In your IV before the nurse administers chemo, you will get some pre-meds. Sometimes it is a cocktail of steroids, Benadryl, prevacid (or prilosec) Zofran or Aloxi. Zofran and Aloxi are anti nausea drugs. aloxi is given in IV.With some chemo, you may have to take steroids or other drugs the day before chemo. Key point, get to know the level of steroids you need (most dosages are based on the average person. I know you are not average, so you don't have to hit your body with a ton of steroids. On the other hand, you may require more than average. Find what works for you. Zofran has been the "go to" anti nausea drug, but there are others. Plus, each works on a different part of combatting nausea. For me Zofran did little to help me except days later after chemo. So, after experiencing horrible almost toilet visiting nausea, I was given Emend. (Emend is a three day pill pack, you take one the day of, the the rest each day after chemo). After so much chemo, Aloxi was causing me a lot of acid reflux. At times, I brought Zantac to take by mouth too. So, I now take Kitral by mouth before chemo instead of IV Aloxi. Now here is the warning part, all these anti nausea meds cause you to get constipated. (see section on constipation solutions) My favorite anti nausea drug is a pill called Reglan. Reglan can be taken in combination with Zofran. Reglan is the best since it DOESN'T cause constipation and helps loosen the bowels. Lastly, when none of these worked as some chemo drugs cause horrible nausea, there is the Sancuso patch (this can remain on your arm up to 3 days, but does cause constipation). This is where I found my idea about Kitral in pill form since it is in the patch. As anything medicinal, ask your doctor. Don't be afraid to ask your doctor over and over again. My doc didn't know about Reglan but the nurse did. Your nurse is your best source of all things chemo related!
TIP: if you were pregnant and extremely nauseous or get sea sick, you may require more anti nausea drugs. don't accept being nauseous!
Recommendations in order of preference: Reglan!
Recommendations in order for treating little nausea to bringing out the big guns: Zofran, Aloxi in IV, Emend (can be taken on same day with Aloxi), and Sancuso patch. (Reglan can be added in the mix) (p.s. compazine and ativan can work, but just did not work for me)
NOTE: Sancuso patch is expensive but insurance will cover it if all other meds failed either ask your docs office to help or call a patient advocate at your insurance.
Eating, drinking...without nutrition your body cannot fight.
You may have loved ones pushing the food and drink. Your taste buds will become altered from the chemo, so everything tastes different or metallic or just wrong. I used to love sweets, but nothing taste right. My salty and sour taste buds still remain, so I tend to eat a lot of these types foods. For each person, comfort foods are different. I wanted ice cream, so even though I couldn't taste it...I ate it anyway asking my son if it tasted like chocolate. Here is my recommendation to avoid the food and drink pushers, eat and drink what you want. You MUST eat and drink to keep your body strong. There have been times when I plugged my nose with one hand and ate with my eyes closed just to eat some scrambled eggs. I have tried smoothies, protein drinks, burgers, and anything else I felt like in the morning. There is a juice shop near me and the owner called other franchises near hospitals to find out what the mot popular smoothies are. He came up with a chemo shake which had little flavor, but filled with plant proteins. I drank it even though I didn't enjoy it. I also have a Vitamix blender because it is so easy to clean and you can out whole fruit and veggies in and it pulverizing it to a smooth no pieces smoothie. Don't be one of those skeleton chemo patients. I know it isn't easy to eat or drink. I have had ginger ale phases, ice tea phases, green tea phases, lemonade phases, milk shakes, Perrier...whatever you can drink, you must drink. Take from me, consequences from not drinking cause worse constipation and dehydration. Consequences of not eating correctly are that your body doesn't have the nutrition it needs to fight the cancer while the chemo kills everything in it's path.
Here is what helped me: Digestive enzymes with every meal to help with absorption and probiotics.
Recommendation: digestive enzymes, pro biotics, EAT and DRINK, don't be part of the statistics who end up in the hospital from dehydration or malnutrition. I know it is difficult, but plug your nose and close your eyes!
Sh#t happens or not: Oh great, all this anti nausea meds have caused extreme constipation...how to avoid moving into the bathroom as your new office with your iPad, kindle, and cell phone. There is so much to remember when you are a cancer patient. It is almost a full time job. When it comes to eating, drinking, and pooping, the job goes to another level. Don't do what I did and lose track of when you actually went to the bathroom, how your urine looks etc...you don't want to get dehydrated or have a bowel obstruction. Keep a notebook in your bathroom and write things down daily. It may be your chemo brain or just trying to live with cancer requires a lot of brain cells. You have to find what works for you. There are prunes, prune juice, veggie smoothies,miralax, fiber pills and other varieties of normal remedies. Remember there is no normal when dealing with cancer, so you may have to take a daily stool softener or fiber. I found that some things made my bloating worse before it got better, so my remedy was when things weren't too bad, I would take nightly Perdiem and stool softener. When things weren't moving, I added Generlac once a day.The Generlac usually worked, but if not. Then I had to take the colonoscopy prep and spend the day at home and in the toilet. It is okay to live in the bathroom for a day if it gives you relief..Now no one wants to feel like they are giving birth in the toilet just to have a normal bowel movement. I know you may feel like you are 90 talking about your poop. If Dr Oz can talk about poop, we can talk about poop as cancer patients.
Recommendations:
Perdiem overnight relief
Stool softener max 250mg each
Generlac RX, tablespoon daily take with extreme constipation
See supplements (apple pectin,
Magnesium citrate 225 mg)
prep for colonoscopy can be used in emergency.
I can't swallow: mouth sores and saving your mouth!
There is nothing worse than mouth sores or sores down your throat when you cannot eat or drink. This is what can bring you to the ER. Believe me I know, I was there-been there done that and no one gave me a free tshirt. The key is to keep your mouth moist with preventative measures like Biotene which comes in toothpaste, gel, and mouth rinse. It can be purchased at Walgreens, Target, Walmart etc...Then there is Mugard which needs to be used prior to taking a drug which causes mouth sores. This truly can help. Lastly, there is the famous magic mouthwash, but some insurances don't pay for it. Try First BLM which costs about $20 if not covered. You can have the pharmacist mix it or you can do it yourself. It seriously can save your mouth.
Recommendations:
Mugard!
First BLM mouthwash, alternative to magic mouthwash compounded by a pharmacy, costs about 20 even if your insurance won't pay. Offered at Walgreens, CVS etc...
Other tip biotene mouth rinse, toothpaste
I can't walk: either I have neuropathy or hand/foot syndrome...what to do
i have ever had bad neuropathy, but I did have horrible hand/foot syndrome. On a positive note, I went on a cruise to Greece during the summer with foot syndrome and came up with a temporary solution. I am big on getting some exercise whenever my body was out of the chemo fog. So, I would stay off my feet as much as possible. I would save my time on my feet for walking on the beach or vacation. I would soak my feet in ice water, and after the walk Epsom salts with cool water. Often, I put lotions before resting or before bed. I also found shoes which were comfortable for me.
recommendations:
Fit flops Josef seibel
Lotions, Eucerin, aveeno skin relief, plus packets include for poison Ivy for your foot bath
True derma, eczema fast healing
Now pure lanolin
RX Vanos 0.1% cream, UltraVate .05% cream
Foot bath
Epsom salts
Ice
Socks, bath and body spa socks
natra CURE SOCKS WITH FREEZER COMPONENTS
supplement: Skin issue phytoceramIdes available on amazon
Dermal therapy body lotion
ALA supplement to prevent neuropathy
ALA supplement to prevent neuropathy
Other creams, burts bees hand salve, use gloves from bath body
True blue bath and body cracked heel treatment, only with. No open sores.
Money, money, money...how to avoid losing every penny while on chemo
Apply for medical assistance through your Electric and gas company, just print the form and have your oncologist sign it
American cancer will provide rides to/from doctor appointments or anything cancer related
Few benefits of having cancer
Apply for handicap permit
Saves you for finding a parking space, less frustration, less stress equals a better you
How to get the VIP treatment with a little help from your friends
Ask your friends to bake! Cookies are your fast past ticket to chemo or doc visit. You would be surprised how a little cupcake could get you a VIP seat at an infusion center! Plus, nurses and staff deserve a treat for all their hard work every single day with cancer patients.
True Blood or how to avoid being a vampire! blood Transfusions
Blood typing takes some time, so if you need a transfusion, it is better to do the typing the day before and then get the transfusion the next day.Blood can take 8 hours to infuse with Benadryl to make sure you don't react. Platelets are faster and oddly enough appear gold in color in the bag. If you don't like to see the blood, just bring a blanket to cover the tubes.
There are old wives tales that help or not help with blood counts like mushroom supplements or chicken broth. Try them, they are foods so it couldn't hurt. The chicken broth is made by getting 1/2 organic chicken, add two tablespoons organic cider vinegar and boil. Remove the meat, put bones back and simmer for 10 to 12 hours. Drink a cup of broth once or twice daily. (you can google bone broth )
Allergic reactions
Allergic reactions to chemo can happen, but there are ways of desensitizing you to the drug again. If you think something isn't right during an infusion, it probably isn't. Tell your nurse.
Find your one fun thing , find your happy place
Whatever makes you happy, being with friends, being alone, walking on the beach, sitting in the car like a dog and breathing in the ocean air, a cup of tea in a comfy chair, listening to music, hearing laughter of children, whatever your fun thing is, find it today. It can keep you motivated for days, months, years...
It happens: your pity party, anger, and tears, the island of negativity
Don't feel guilty for your tears, your anger, your frustration. This journey isn't easy and you are fighting for your life today, every day, every hour. Your family or friends may or may not understand. Most will come to accept this behavior because no one knows what you are feeling except you. I've had full blown anxiety panic attacks, but have someone nearby to bring you back whether by saying calm quiet words or offering a hug, a shoulder, or just sitting by your side. Living with cancer is a bunch of unknowns, so there is no need to workshop to find an answer or find a solution to all your feelings. You are often reminded of your own mortality if not with your own journey, but in the faces of the patients of the chemo closet. It is okay to visit the island of negativity and very normal, but just make sure it is a short visit. Come to the present, enjoy the present, enjoy the moment, and join the living because that is what you are doing. There are many who lose their battle every day and always someone worse than you.
Clinical trials, google alerts not on clinical trial .gov...make friends with a scientist
You can be one step ahead of the game on the clinical trial info. Most upcoming trials are not posted on clinical trial.gov. Ask major cancer centers, some docs will tell you of upcoming trials. OR you can set a google alert for your cancer and any and all info in the news will come your way via email. Lastly, make friends with a scientist or researcher. If you reach out to one, they will most likely respond. They can explain a clinical trial for you or prioritize trials based on the results that they know.
Smells or oops I stink because I forgot to take a shower: chemo brain and side effects of not remembering.
Chemo brain is a true ailment. You should use all your tips for remembering things. Post its come in handy, as well as note pads, binders, applications like Evernote or similar. Try not to get frustrated as it can come in handy like the fact that you forgot to do the laundry. Have someone else help with the little things to save time for big things.
Avoid emotional vampires and those who have to tell you about all their relatives who died from cancer
Most people don't know really how to handle the "I've got cancer news." Try to understand that most people want to help, but don't know how. The people who want to tell you about every "cure", "potion", or relative who died or almost died are not very helpful. The people who end up needing your emotional support are also not helpful. The key is to surround yourself with positive people who keep you motivated. You will lose some friends and gain some new friends. It is also okay to seek alone time for you to find some peace and quiet.
Blood issues
Prevent transfusion with bone broth (boil organic chicken with 2 tabs of apple cider vinegar)
OR take neulasta or neupogen ( take 3-5 ) in a row for those who get weekly chemo, but I'd once a month neupogen, TAKE claritin before shot! Somehow prevent pain, bone pain
Procrit or Aranesp for red cells boost
Blood typing can take 2 hours do it the day before
Blood safety, blood transfusion, side effects.
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