You Have Cancer, Now What Freshman? #1
This informative content covers physical, psychological, social and spiritual well-being, with suggestions, considerations and reminders broken down into 4 levels: FRESHMAN, SOPHOMORE, JUNIOR, and SENIOR. The Freshman section guides the next important steps immediately after finding out one has cancer, the Sophomore and Junior levels level gives in-depth information about monitoring changes in cancer patients’ bodies, including familiarity with blood work, scans, and nutrition, side-effects, and medication. The Senior level closes with the final steps, specifically discharge, and life at home. Look out for updates in the future, subscribe to our YouTube channel, and please comment and respond. Your opinions are welcome and might help others.
The FRESHMAN #1
The following narrative is designed for cancer patients, their friends, family, and caretakers going through their first few days of ailment. This introduction covers questions to ask your doctors, what to pack and not pack, and how to manage your finances. This guide is first intended for patients who will be hospitalized for long stays, but also applies to out-patients. The FRESHMAN is the first of four linked segments.
iLeukout does not conduct or use scientific peer-reviewed data to make any medical claims or reporting. Please confirm with your medical professionals and advisors before attempting or continuing any considerations presented by iLeukout. iLeukout does not make any pharmacological recommendations on our posts. Drug related references are detailed by what methods the author of the post or their medical team might have used. Every patient and medical team is different, and what may have worked for one patient may vary greatly for another, including benefits and side-effects.
Common terms you might encounter:
Counts - This refers to the number of cells counted during a Complete Blood Count (CBC)
Neutropenic - According to the Mayo Clinic, this is when the immune system is not doing so well, and specifically, the white-blood cell count is low, usually under 1,500
Mucositis - When powerful chemotherapy and often radiation kill fast growing cells in the mouth, throat, on the tongue, and further into your digestive system. It could lead to painful mouth swelling and sores that form in the mucus membrane
White Blood Cells (WBC) - Part of the body’s defense system that fights impurities or bad guys. They can also attack the good guys at times
Hemoglobin - Red blood cell responsible for carrying oxygen throughout the body
Anemia - A side-effect from having low hemoglobin in the body
Chemotherapy (Chemo) - Drugs used to kill fast growing cells, including cancer cells and even good cells
Central Venous Catheters (PICC line, Tunneled catheter, Implanted port) - According to WebMD, small tubes that are inserted in a patient, later used for drawing blood and infusing medicine
Platelets - Help clot the blood together in the vessels, limiting bleeding
Oncologists - Doctors who treat cancers or tumors
Hematology - The study of the blood and its many parts
Stem-cell transplant - Good cells are infused into the body, and hopefully they attach to the bone marrow to produce healthier and non-cancerous cells
Hello Freshman! Thank you for reading this guide. How did we even get here? Well, chances are, you probably started feeling bad, or had a check-up, and some abnormalities were found in your blood, organs, bone, or tissue. Further tests were done, and now, here we are.
So, the oncologist, the bearer of bad and good news, mentions words such as: “Yes, we think it’s cancer, or ‘I believe we caught it in time.” Maybe you heard, “I’m afraid you have CANCER, or ‘Our tests show malignancy.” Well, from that moment you find out cancer is taking over your body, you are immediately enlisted in training camp, and you don't even know it. From now on, every decision you make matters more than you could have ever imagined. So let’s get started freshman, welcome to iLeukout.
After finding out the life-changing news, you might feel confused, guilty of past actions, scared, anxious, angry, confused, motivated, or empty. You might not be ready to ask your doctors specific questions, due to emotional constraints, which is absolutely fine. You need time to soak everything in, and the last thing you might want to hear at this time is medical jargon. It’s okay, you will have time to gather yourself and ask questions later. When I first found out, it didn’t hit me until I reached my dorm room and then had the “WHY ME” cry. I never cried so hard in my entire life. You will not lose points for being emotionally overwhelmed, and eventually, most things will make sense, and you will find the answers to questions like “why you”. So here is our first list.
Top 7 Questions to ask your doctor right after you are told you have cancer
Doctors shouldn’t mind a well-informed patient right? You shouldn’t either. Don't be afraid to ask honest and concerning questions. You want to ask, but don't know what to ask, so start with these:
1. You could ask, “What in the world do l have again?” Your medical team should explain your cancer to you, along with how long your treatment plan will last, and how many cycles you might be going through. You can choose to tackle cancer in the following ways: (1) Do nothing, (2) treat with natural methods, (3) a mixture of radiation, chemotherapy, stem-cell, genomic methods, etc., (4) or surgery. Sometimes, a fairly new and alternative method could be prescribed due to very poor prognosis.
2. How aggressive is my cancer, and how exactly is it behaving in my body?
3. What is the survival rate for my cancer?
4. What are the chances of reoccurrence or relapse after treatment?
5. How long has my lead physician been practicing oncology?
6. How does your treatment center compare to the rest of the country/world? You can also find out where your cancer center ranks in this link. I like the Becker’s list attached here, because it shows where the centers ranked in the year 2000, and where they rank now. So maybe you don’t get treated at MD Anderson, Duke, the Mayo Clinic, or John Hopkins… it shouldn’t mean your local center isn’t good enough. DISTANCE and FINANCES are other factors that could be as important as QUALITY. Finally, some treatment centers specialize in certain cancers and certain treatments, so their high rankings don’t necessarily mean they are great at everything.
7. What are my other options? DON’T BE AN OSTRICH with your head in the sand. There's nothing wrong with trusting your medical team, but also be aware of what other cancer centers, oncologists, research scientists and treatment centers are doing. I know it seems overwhelming at first, but this will not only keep you in the loop, but also help with comparing other procedures and outcomes. For example, other centers might be treating your similar cancer as an outpatient, while your team wants you confined in the hospital for several days or weeks. Seeking a second opinion isn’t a crime. Be sure to find out exactly what works best for your situation. Also, consider your pre-existing medical issues, age, financial situation, including health-care, etc.Cancer Treatment Centers of America now has specialists, or care managers that work with each patient from day one, while other treatment centers may have social workers that help you figure out your next steps as well.
Now what? Who do you tell, and when? Simple geometry. You have a dot ., a circle O, and a globe. The DOT is the smallest, so that’s what represents your closest and most trusted people, (immediate family, spouse, parents, children, spiritual leaders, significant others, siblings, BFFs). You then have your distant friends, family, and companions in your CIRCLE (from John Smith you knew since high school, your Aunt Mary you haven’t spoken to in months, to general co-workers). Finally, the GLOBE is the largest, and represents the rest of the world (friends on social media, distant relatives, classmates, strangers). The globe shouldn’t know something that a dot member doesn’t. So share your big news in this order: (1) Dot, (2) Circle, (3) Globe.
Screen shoot first, ask questions later. Yes, the Internet is flooded with accurate and inaccurate data. Welcome to the world of information overload. You will need to gather plenty of info from here on out. Your medical professionals will provide you with several printouts and pamphlets about drugs, procedures, symptoms, and side-effects you may encounter. Feel free to take notes, SCREENSHOTS, and remember, you can also research information on the internet. The American Cancer Society, and Cancer Treatment Centers of America have several pages of information and data that could help you get started. WebMD, The Mayo clinic, and even your local cancer treatment center are also trusted sources. You can find easy to read articles with images from other sources, and YouTube sometimes has some explanations that are given to you clearly and illustrated.
When using the internet as a source of information, remember, some of what you have read might be true, and the rest might not be. Patients are sometimes misled and advised not to look up information on the internet. The internet is the widest database made available to you throughout this journey, you just need to use it wisely.
Never reject trusted information. The Internet could teach you how to court the one you love, make a Reuben Sandwich, learn javelin tosses to win you an Olympic medal, and also inform you about your cancer, its treatments, side-effects, treatment centers, etc. It doesn’t matter how many internet sites you have visited, or articles and videos you have viewed, you shouldn’t turn down information from your medical team and trusted sources, even if you have heard it all before. One way to be a proactive patient is to continue researching, bookmarking webpages, and saving handouts given. It is up to you to then review the material and attempt to find some commonalities. Find common themes previous patients and medical professionals have found successful and unsuccessful. For example, baking soda is an ingredient you will come to find very handy as we progress.
You may find “bad,” or “false,” information, but this shouldn’t discourage you to never use the Internet at all. Instead, look for common trends that seem to appear often, take notes, and then gather questions to ask your medical professionals. Medical professionals can appreciate a patient that understands what is going on, and at least understands the basics from trusted sources. For example, if most of your information is advising you to use baking soda and salt for the mouth sores you could get, then consider asking your doctors about this. You may never understand quite as much as your medical team, but you should still know enough to question, agree, or challenge. Whether it is taking images of the changes to your body, saving handouts, or screenshots and bookmarks, never limit your yourself on information. Keep an organized collection of all this information. Teamwork doesn’t just have to come from the medical staff. Patients can pitch in by being more knowledgeable of their situation, and can react and report issues quicker, while also caring for themselves.
Now, you don't have to suddenly memorize when childhood cancer month is, plan to do every cancer 5k, or even know what the drug methotrexate is yet. We will get there. Right now, you need to know WHAT TO PACK, specific items you might need, how to manage your FINANCES, some DRUGS to learn and their SIDE-EFFECTS, what to do when you finally GET HOME, and so on.
Top 7 Things to consider when packing for your battle with cancer
You might be receiving treatments as an outpatient, and might not need to be in the hospital for several weeks or months at a time. But you might. If you are, then the following applies to you. You don’t need to have all these items initially, as you could have some items brought to you later.
“Room and board.” Through multiple cycles of treatment, you may be in and out of the hospital often. This is a detailed list of items to carry, and a few considerations.
1. Spiritual items. Bible, Koran, Tanakh, Rosary, Shruti, inspirational novels like “The Shack,” prayer blankets, and mats. These could help uplift you and keep you in a positive state, but be sure to still sanitize and keep these items clean, especially when your counts drop. If you are NON-SPIRITUAL or maybe more driven by science alone, then indulge in information about the amazing transformations you are about to go through, whether any deity is responsible or not. For example, meditation is a common theme that could relax and strengthen your mind, body, and soul, regardless of belief in science or spirituality.
2. Entertainment and work. Laptops, iPad, phones, earphones, gaming systems, chargers, hearing aids, hobby items for sewing, painting, crafting, etc. On good days, you may be able to do some work, school, play your favorite games, find out more information about your situation, or watch your favorite shows online. Music can be very important now.Have your songs ready to go. You need songs for bad days, good days, during painful procedures. There are plenty of free meditation and calming sounds online, and your smart device store, which could help relax and comfort you. Spiritual music, workout music for your walks and exercise, and even shower music could help you sing along to.
3. Clothing. For long stays, you want the most comfortable clothes and shoes. Hats or caps can keep your head warm. Buttoned-up shirts may not be the comfiest, but they make accessing your central line easy. T-shirts are comfy, but can be a hassle with accessing your central line, and infusion tube, which could be uncomfortably cold sometimes, when pinned to the skin. Your line may also leak fluids, while pinned to your bare skin. Slim cycling shirts work well, since they can unzip and allow your central line to be easily accessed, and also enable a comfortable layer if fluids drip. They also have convenient pockets in the back, perfect for storing devices. Compression gear are comfy, and could help with blood circulation also. Be sure to warn your care takers to be careful and protect themselves when doing your LAUNDRY, since some chemo from spills and urine could be on linen. Pack enough clothes for a week first, then hopefully, your caretaker can bring fresh ones and launder the old. Laundry bags should be provided at your treatment center. Have a pair of tennis SHOES to walk with, and for exercise. Pack a pair of house slippers for your room, and a pair of rubber slippers for the bathroom and shower. Never set your bare feet on any floor.
4. Comfort items. The hospital has enough linen, gowns, and blankets for you. I know they won’t be the comfiest, but cleanliness is still the key here. The hospital will have clean sheets, towels, pillow cases, and blankets changed for you daily. Unless someone can have your personal linen from home, washed very often, leave them at home. Also, your pillows might be allowed if they are new and still in the original packaging.
5. Foods and drinks. You should get your meals about three times a day, but there are also some items you could have of your own. Talk to your nurses about menus, and request a dietician for special needs. Tea/cup/mug. Beverages such as GREEN TEA and Echinacea tea can be essential for everything from hydration to anti-oxidation, if allowed by your medical team. You will need a portable water boiler for your hot teas. Be sure raw items are not loose, but bagged and cooked. You need your own tea mug that you can cover. Open drinks are less advisable when neutropenic, since particles can enter. You also shouldn’t leave drinks sitting out for hours before drinking again, your backwash could contaminate standing drinks that are no longer fresh. HONEY is great for your warm drinks when your throat gets scratchy, and is a natural sweetener. While neutropenic, avoid raw honey. Choose STEVIA over sugar if possible. Use PRUNES as a natural stool softener. GATORADE could be great when you have low appetite and nausea. Sometimes, when you can’t keep much in your stomach, a Gatorade or alternative drink full of electrolytes might help. ENSURE is a great tasting drink, loaded with nutrients and vitamins, OATMEAL and FLAX SEEDS are great for breakfast (Oatmeal and honey, natural, healthy, cholesterol lowering yum), and some PROTEIN BARS for snacks. Canned soups. Some medical units only have Styrofoam cups and plates, so having your own water boiler or one or two bowls and cups to heat your food or drinks could be essential. The hassle is just having to clean these items after every use. Finally, some treatment centers allow a small personal refrigerator in your room, if not, there is usually a communal area with a refrigerator, microwave, and other food items for you and your caretakers.
6. Paper work. Identification, Billing information, financial related documents, Living Wills, Power of Attorneys and Directives, previous blood work and other medical records.
7. Toiletries/Medicine. Your hospital will have items for you, including a toothbrush, toothpaste, soap, socks, sterile water for oral care, sanitizers, mouthwash, and a vomit bucket. These items are okay, but may not all be customized for cancer patients, from a patient’s perspective. Toothbrush. Okay, you need a manual toothbrush as SOFT as possible. When toothpaste cakes at the bottom, it just creates a soft bed for whatever impurities that just came from your mouth. You will need to wash and rinse your toothbrush thoroughly, before and after you brush, as well as changing toothbrushes often. Believe it or not, children’s toothbrushes also work great because they are smaller and can be better controlled. There is nothing wrong with having an IRONMAN or FROZEN princess toothbrush. Bring your dentures and retainers, and keep them clean and sanitized. You also need a tongue cleaner, not the one you find at the back of your toothbrush, but a real one. The tongue is one of the most delicate, yet easily ignored islands. There are some authentic tongue cleaners that are flexible, and if used properly, may not necessarily trigger your gag reflexes at a time when you are prone to vomiting easily. Orabrush is also a respected tongue brush. Baking soda and sea salt for Mucositis is crucial!!! You will find a recipe here from MedicinePlus. Don’t forget the sides of the tongue and sides or the mouth when gently cleaning, because Mucositis is a sneaky fellow. Toothpaste. Arm & Hammer makes their sensitive toothpaste with baking soda and Orajel. This helps with pain, contains fluoride, and freshens. Colgate makes some neutral toothpastes that are not overly flavorful. Mouthwash. Try not to use tap water to rinse your mouth. Bottled water or sterile will be given to you by your nurses. Most treatment centers will have Biotene. Biotene not only soothes and moisturizes your mouth that can become dry, but more importantly, it balances your pH, given the effects of toxic chemo. Biotene also makes chewing gum, gels, and toothpaste. Peridex is another useful mouthwash that fights inflammation and can be prescribed by a dentist. Soaps, lotions and shampoos. Well, the shampoo part won’t be as important would it? Try to use liquid soaps and lotions without harsh ingredients, but with natural and botanical ingredients like Aloe Vera. Common themes for body wash are those that are medicated, antibacterial, and could balance pH, only if they are proven to be safe and actually work. A small mirror and flashlight could come in handy when looking inside your mouth for signs of mucositis, or other areas. If possible, and if not an irritant, stick to hair removal creams that don’t require a blade that could cut into the skin. Lip balms that could be applied with clean fingertips, rather than ChapSticks that could harbor germs from multi-use. Nail clippers. Though the hospital has their own, you might need your disinfectant wipes to clean surfaces when you first arrive, not ignoring the bottom of your shoes often. It is best to wipe down all the materials you bring into the treatment center before you pack and unpack them. You should do the same thing before you go home. And finally, pack inhalers, EpiPens, and other medications you take, but be sure to check with your doctor about these and supplements you might want to continue or begin taking. Most oncologists would approve these, though if you bring your own, they may attempt to have you take the hospital’s version of supplements. Here they are: A multivitamin, as your body begins rebuilding, it will need all of the help it can have, Vitamin B-12, Fish oil or Krill. Alka-Seltzer or Tums for antacid, and cough drops.
Top 7 Things NOT to pack for your battle with cancer
1. Spiritual items not to pack. Don’t over-do it, keep it simple. For example, you may not need every single version of a religious manuscript. Your computer could save you plenty of space, since you could access a lot from there.
2. Entertainment and work not to pack. Large posters, oversized computers, and pictures. If you are a professional painter, and plan on working on a simple and short project with a small canvas, then this might be fine, but don’t bring the entire art gallery or 100 paint brushes. Getting up and doing hobbies is fun and healthy, but don’t over accessorize. You will be in bed more often than you might expect.
3. Clothing not to pack. Pack your items in one or two big bags, rather than several small bags. Avoid bringing your own daily towels or linen, since the hospital will provide these. An iron, or any clothing that will require ironing. Jewelry, besides a fitness activity tracking band. Luffas and wash cloths. Dress shoes. Car keys, wallets, and purses could be handled by your caretakers. Though you could also need credit cards to pay bills and purchase items online.
4. Comfort items not to pack. Pets. The hospital has enough linen, gowns, and blankets for you. I know they may not be the comfiest, but cleanliness is still the key here. The hospital will have clean sheets, towels, pillow cases, and blankets changed for you daily. Unless someone can have your personal linen from home washed very often, leave them at home. Also, pillows might be allowed if they are still in the original packaging.
5. Foods and drinks not to pack. Alcohol. Try to limit an over acidic, over fatty, over salty, and over sugary diet. You can order fruits and other items from the hospital menu, or have your own canned items and snacks. Some treatment centers also allow food orders from outside sources.
6. Paper work not to pack. Too many books, folders, and printouts. You may not have time to read them all. Remember, if you can access it on your computer, leave it behind.
7. Toiletries/Medicine not to pack. Shampoo, since you might lose most of your hair. Luffas. The hospital will have daily wash cloths for you. Clippers and blades could cut you, and could be risky, since cuts could be an open gate to germs when your counts are low. Use hair removal creams if you are able to. Waterpik and stringy dental floss. Floss picks, carefully used, are a safer option when your counts drop. Since you can’t floss and brush as forcefully, you would want to avoid eating foods that are known to attach to your teeth and gum line, like corn, certain meats, popcorn, etc. Supplements not approved by your medical team. Ask your medical team what they would prefer you to use for cleaning your ears. Listerine is highly frowned upon, mainly because of its alcohol content, which dries out the mouth. Dry mouth could make mucositis worse. You don’t want an automatic brush, as these can be aggressive when mucositis comes to town.
Top 7 things cancer patients should consider when prioritizing their finances
1. Health Insurance now, hospital bills later. If you stop paying, they may stop paying...you attention. Cancer treatment is costly, and you don’t want to lose coverage by not paying your health insurance. You will also have your hospital bill which will be left over from what your insurance doesn’t cover. You might not be able to pay the full balance on the hospital bill, but you can set up a payment plan with the hospital, and gradually reduce your remaining balance. Blood donations and sometimes Bone-marrow Drives can count towards your hospital bills. Ask your medical social worker about possibly organizing these. Without health insurance, you and your caretakers can apply for funding from numerous foundations. If the hospital does pay for your care, through their charity programs, you might still have some remaining bills and medication that may not be covered.
2. Feed me! You need the healthiest diet possible, no good food shortages please. Your body needs to rebuild your cells, and you need to have the best foods on deck.
3. Get your money right! Mortgage, rent, power, water, phones, internet, cable, life insurance, and credit cards. Though you are in and out of the hospital, bills still need to be paid at home right? Instead of risking lowering financial scores by not making any payments at all, and increasing unwanted calls from debt collectors, do this: During medical hardships, several companies offer reductions to the amounts you need to pay, and offer payment deadline extensions. A $140 monthly bill could become a $25 bill, until you get back on your feet. Call and inform the desired party of your medical hardship. In some cases, the company might end up closing the account while you pay down the remaining balance. Take care of finances as early as you find out what your treatment plan will have, and reevaluate your needs and estimates as things change!
4. Kicking the can. Your health is the primary concern for you, but don't lose sight of the fact that the medical industry is still a business. If you are able to, you might be advised to prolong the start of your treatments until you can get health coverage with manageable premiums and deductibles. Some cancers are very aggressive, and you must start treatment immediately, and you may not have time to wait for your insurance coverage to begin. It doesn’t help to try getting health insurance even after you find out you are sick. If you don’t have insurance, and are not able to get coverage, plenty of treatment centers will still treat you. Sometimes, health coverage could be the difference in the treatment quality between patients with good coverage, and patients whose bills will be covered by the hospital. Having health coverage could be a life or death decision.
5. TALK to the hospital’s social worker about missing work, filing for sick leave/unemployment, and disability options during your treatments.
6. Seeking donations. From work, to school, family, friends, or even strangers online, there are remarkably altruistic people out there, ready to help support you physically and financially.
7. Wait what? Every medication, treatment or equipment may not be covered by your insurance. Some medications that don’t directly relate to your cancer treatment, or items from certain pharmacies may need to be purchased out of pocket.
As stated in our terms of use, patients are different individuals, and should please confirm with their medical professionals and advisors before attempting or continuing with any medical advice suggested from outside sources.
