Cancer- Round Two (with helpful hints on dealing with treatment)

Well. It’s back again. The cancer has resurfaced in the lymph nodes behind my heart. It is inoperable because of where it is located. It also cannot be radiated for the same reason. Right behind my heart. Can you believe it? How sneaky can you get? I swear sometimes I think the cancer itself has a brain. How else would it know exactly where to go hide? Ahhh, well… I suppose it could be worse.  You know, I have said before that in some ways, having Stage IV is easier than any other stage. When the doctor told us the news, I was just so happy that it wasn’t in my brain or liver or somewhere else that it was no big deal to hear her say two lymph nodes. I knew it would be back. And sadly, I knew it would be back quick. But I still have faith in myself that I can get through this again. 

So... since I am starting Chemo again soon, I thought I would share some things I have learned along the way. I kept meaning to post these helpful tips and I keep forgetting (thank you Chemo Brain)

Okay... let's start with the four bajillion appointments... Get yourself a calendar to put on your fridge. You go to the fridge every day, so having something there with dates, times and places will help when you have so many appointments. Especially if the appointments are all in different places. Also on the calendar, write down what you paid and who you paid it to. You will be getting a great deal of mail asking for you to pay this and that and it is easy to have one slip past you. Do the same on the bills and set up a file just for your cancer treatment. At tax time, this will be a godsend. At the end of the year, ask your pharmacy for a printout of all your medications. Be sure to keep your receipts for all your health related items, like the bandages, tape, tylenol, and other OTC items that will be a regular part of your treatment. Keep a mileage log just for doctor's trips. You may be close to the office, but believe me, the mileage is going to build up real quick. If you have to visit a specialist out of town, make a note on your hotel and food receipts. Your tax preparer will thank you.

The American Cancer Society has a great folder to help you stay semi organized. Get it. Also... get a three ring binder. You are going to be handed all sorts of information and it is easier to leaf through a binder than to dig through mountains of paper. Your oncologist might be like mine and give you a set of papers detailing possible side effects, with a place to make notes. If so, that's awesome!  DO IT!!! Take notes! Write down each day what you feel like, what weird things you noticed ( Did your toes tingle today? Were your hands swollen? Did your urine change color? Did you get a headache?) and then take the book with you to your appointment. You might only see your doctor every two weeks (or less) and you will not remember everything that you felt or experienced. Remember to rate how much something hurt or caused discomfort according to the scale like the hospitals use (The pain numeric rating scale (NRS), on which patients rate their current pain intensity from 0 (“no pain”) to 10 (“worst possible pain”), has become the most widely used instrument for pain screening). This way, your doctor can help you better manage your side effects.

Your first few appointments are probably going to include a lot of scans that use that gross jelly stuff. Take some wet wipes.

For your safety, get a medical alert bracelet or pendant, preferably one that has a place to write all your info. That way, should you be in an accident, or have a medical emergency somewhere, there is a list of your medications on your person for the EMT's.  Have a card with emergency contacts in your wallet. Ladies... a big purse is awesome for carrying the millions of things we MIGHT need, but a small wallet you can put in a pocket with your insurance card, doctor's info, emergency contacts and a note concerning your health care directives will save time. 

Speaking of health care directives... if you haven't done it yet, you need to do it NOW. Have it on file everywhere you get medical attention. You need to have someone, other than yourself, who can speak for you, access your records and make decisions just in case something happens at a time when you are incapable of making the choices yourself. Also, before you start any kind of treatment, you might want to do some end of life planning. No... I am not being morbid, I am telling it like it is. If you want to be sure that your wishes are carried out exactly how you want them, then you need to take care of it before you start any sort of treatment that could later be used in court to say that you were mentally incompetent. Do you think someone in your family might object to anything you want? If so, that is all the more reason to get it done before you take the first Xanax, Hydrocodone or Percocet.  ( Here are some great resources http://www.caregiverslibrary.org/caregivers-resources/grp-checklists-forms.aspx     Or  http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289 )

Okay... You have your diagnosis and you are about to start chemotherapy. My biggest piece of advice... Get a blanket. Those places are freakin cold! You can always tell who has come for their first treatment because they have no blanket. Oh, they have bag with books, puzzles, their phone, a music player and stuff like that, but after about 30 minutes, you see them burrowing into the chair. Personally, I stopped carrying anything to chemo but this short list : my green fuzzy blanket, my stuffed dog (thank you again Jenn) and a bottle of water. See, I learned quickly that I will sleep through the whole thing, so why carry things I won't need. Dress comfortably. Oh yeah!  and while I am on the subject of dressing, let me issue a small warning. If you have a port like mine in your chest, you are at some point going to have a blood related stain on your shirt. Either bring a Tide wipe, or do what I did... go to Goodwill and buy shirts just for chemo. Mine are soft material with button fronts that I bought in the mens department. They make it easy for me to only expose as much of myself as I have to for the doctor. I can stick the tube through the space between the buttons so I don't have to remain unbuttoned in case I need to go potty while I am hooked up and if they get blood on them, I am not upset because I now have a blood stain on my favorite shirt.

Also... if you have a port, you will be putting a cream on it an hour before your appointment. Don't skimp. That stuff is meant to numb the area. If you get some small Tegaderm patches (about 2x2), you can put it on over the cream to keep it from getting on your clothes. When you get there, don't be afraid to ask them to freeze the area. There is no need to be in pain.

Your first week of a new Chemo regimen... be prepared with plans and back-up plans. If you intend to work through it like I did, then be sure you have a back-up plan in place for you to go home when you need to. The last thing you want is to be stuck at work and be throwing up your toenails. The first couple of times you have treatment, watch for when you start to feel the effects and schedule around it. Mine was two days after the actual chemo, so I would go to work after I left the chemo facility, work 10 hours the next day and then the next day, my vomit day, I stayed home. My staff knew what was going on and were prepared just in case we had to make any emergency scheduling changes.

Now... the Mastectomy. There are all kinds of sites that tell you what to pack for the hospital stay, so I won't go into that here. I am going to tell you about when you get home. Let's start with those wraps and bandages and the bulbs. Let me say, the itchiness of the bandages almost drove me crazy. My mom tucked a pillow case between my skin and the edge of the bandage/bra.  You can order a lovely post mastectomy camisole if you want. It has pockets to hold the bulbs and is made to work with the bandages. I am not one for buying stuff that I will only use for a few weeks, so here's what we did. Scarves wrapped around your waist will keep the bulbs from touching your skin. Men's  muscle tee shirts pulled on over the bandages are softer than the bra, can be folded up so they don't interfere with the drains, and safety pinning the bulbs to the neckline keeps them out of the way. Footie socks fit over the bulbs nicely to keep them from irritating your skin. Eye glasses holders ( those cords that you slip on your glasses to hang around your neck) are great to pin the bulbs to so you can bathe. Orajel (benzocaine 20%) is great for the stitches that are holding your bulbs in place ( every move you make is going to pull on those stitches). If you are a stomach sleeper like me... this will be your biggest challenge. So... either sleep in a recliner or find a way to barricade yourself so you don't roll over. We took the sofa cushions and barricaded me so that no matter which direction I rolled, there was a huge pillow stopping me from rolling on to my stomach. We also placed large pillows in the bed so I was partially upright. 

I am sure I have more stuff, but my chemo brain is acting up, so I will close out now by saying I hope this helps. I wish someone had told me all this when I was first diagnosed.