say “Cheeeeese”

Cheese

Say “Cheese” – PET CT vs CT vs MRI What is the big difference. First, let’s state fact, none of them are enjoyable. There’s no one telling you that the camera loves you or that you’ve just got that “look”. Face it, instead of a modeling contract, you basically are going to get good news that you are clear or bad news that no one wants to hear.
So what’s the best scan to get? Let’s start with the fact that different cancers show up on different types of scans. Different aspects of different cancers also show up differently on different types of scans. Confused?

Full disclaimer, I’m not a doctor, so here’s just what I have learned. Say you have a tumor, it will show up on a scan, however a blood cancer may or may not. Hold up now, some tumors can be too small to be detected on a scan, but they are there. I believe they must be 4mm to be detected. To add to the confusion, some things may light up on a scan and be nothing more than inflammation or infection. So what’s a cancer patient to do??
Here’s what I do. We do regular CT scans to watch for changes in the size or shape of things in my body. We look at lymph glands, organs, prior surgical sites etc and see if there are any changes. If you are watching a tumor, you see if it’s getting bigger or growing legs and attaching to things nearby. If we notice changes, we dig further either with a PET CT or MRI.

Once a year, we do a PET CT. If I stress about anything, it’s waiting to see what my PET CT results are. The PET CT sees the most detail. Here’s my Junior Doctor explanation. On a CT, you may see a lymph gland that looks perfectly normal in size and shape, no changes. This same lymph gland on a PET CT, may light up on the inside. This light up indicates activity. This activity can be cancer brewing and it also can be infection, left over radiation that is healing, inflammation etc. Depending on your cancer type, this light up most likely is cause for further investigation. Mine indicated that cancer had spread. By catching it early on a PET CT, we were able to do 10 days of radiation and zap it. Bye bye!

An MRI is a loud machine. You should wear ear plugs or headphones at least. Also, any metal is attracted to the super powerful magnets in the machine, so they should be removed first. In my case, the MRI is used to confirm what we find on a CT or PET CT. It is a scan that causes the least harm to you because you are not getting a dose of radiation. Don’t fear the MRI, just protect your ears!

For your PET CT or CT, wear clothing that does not have any metal in it. You don’t want your doctor to think that guitar shaped belt buckle is a very cool tumor. Ladies, wear sports bras that don’t have any metal hooks or adjustment straps. Your wedding ring should be fine, because they usually are not scanning your hands. Bring socks, because if you take your shoes off, remember they keep those rooms at about 55 degrees!
Get ready to lay still and breathe naturally. Some tests will require you to hold your breath for a few seconds and release. All in all, they take about 15 to 20 minutes start to finish. If you have to drink the chalky liquid that mildly resembles Orange flavored Tang, just grin and bear it.

 


Coffee and Chemo – you’re invited

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“Coffee and Chemo” is what I call my chemo sessions. Sitting in a vinyl chair, hooked up to a pump and being sad and quiet is not my thing. It’s daunting enough every chemo day, and to warm yourself up to get excited about the pending poison that is about to be running through your veins. It might just be the weirdest felling having to want chemo and all its ick, and at the same time, striving to live as clean and healthy of a life as possible. Having friends with me makes it all so much better.
My friends always ask what they can do for me, and my reply is usually, “come to Coffee and Chemo with me”! As my daughter says, Starbucks makes everything better and she is right. My friends stop at the hospital Starbucks and then come join the party. We always take photos and post them for all to see the fun we are having.
Think about it, we all need liquids, we need fattening treats to combat weight loss and there are so many flavors to choose from…chai latte with almond milk being my fave. Let’s see, in addition to family and friends, I’ve had friend’s daughters come, and people interested in seeing what getting chemo is like, doctor friends, and co-workers all enjoy Coffee and Chemo. We laugh, we make plans, we chat with the nurses, I eat, and we just have fun.
Secretly, I think the nurses enjoy our Coffee & Chemo parties too.

 


Who ME???

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People with cancer are those slightly defeated looking faces on TV commercials, with happy, supportive people all around them. People with cancer are the frail humans that sad movies are made about. Not me!
Face it, when you first find out you have cancer, it doesn’t seem real. Call it denial, doesn’t matter. You are going from a life of worrying about work, family events, social schedule, home repairs to a new normal that is hyper focused on saving your life. Yes, I said it, you are saving your life. Clear your calendar delegate your duties, sounds selfish but your new focus is on you.
Why do they say it hits everyone differently? Deep sadness is a guarantee. How you pick yourself up and how long you stay in the sad phase is up to you. So, yes, that thing over there (cancer) with your name on it, is yours. You don’t have to wear it everyday, you don’t have to carry it with you everywhere, you can put it away for most of your day and focus on the people, interests and activities you enjoy.
I often laugh at myself, because even though my cancer is quite serious and some would think it is always on my mind, I will have a friend stop and ask me how my condition is. I kind of jolt for a quick second as I switch gears, as I quickly remind myself they must be asking about my cancer (not if my tennis rating will be changing, due to my super-human performance on court this year – haha, or how I’m dealing with my last child about to move out of the house…). They want to know what’s new on the cancer homefront. Oh yeah…I’ve got cancer….ummm…what tests did I just have, or what am I about to have…quick…say something so you don’t look like a complete ding dong. Honestly, it’s usually just not the first thing on my mind. Admittedly, sometimes it is, though.
I think the turning point for me was after I educated myself. Once I understood what I have, how I may have contracted it (I sure don’t like the cop-out “bad luck”), and that there is hope for me, I started to educate myself. Education moved me out of the sad phase. How about you?


Cancer VIP??

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Cancer VIP – you just gotta ask. Well, they may not roll out the red carpet, but most cities have hotels that cater to cancer patients. They know you are not excited to be there. You aren’t going to rent a cabana and have bottle service by the pool. Being close to amusement parks or afterhours hot spots is not what is bringing you to town. Your needs are different.
Most cities have some hotels and apartments that offer “Medical Stay” rates. Check with your cancer center information desk, or ask the hotel or apartment office. Most are located near the cancer treatment centers and that’s a great start, but remember, you may not be feeling well and your immune system may not be 100%.
You may prefer a hotel that does not have a huge lobby or gathering place that you have to walk through as you enter and exit. You may want access to specific foods at the onsite restaurant. You probably need as much exercise as you can handle, so find a hotel or apartment with safe surroundings that you like walking in. We stayed at an older apartment complex that was in a residential area, had great local restaurants we could walk to, including a grocery store, and had a pool area that was not used much, so I didn’t have to worry about being around too many people.
Don’t be surprised if these hotels have shuttles to the cancer treatment center too. They are used to patients staying there. I also bet the restaurants are used to delivering there as well.
Pick a place you like and rest well. Your happiness is important.
TAG: hospital rate, cancer treatment tips, medical stay


Signs you are not an Olympian

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No, you’re not an Olympian – Yeah, yeah, yeah….you used to run 5 miles every morning, work 12 hours a day and leap small buildings with a single bound. Even Superman had a kryptonite and yours is cancer!
If you are like me, you are used to being active. Working out a couple of mornings and evenings a week and pushing yourself a little more on the weekends was your norm. Running from activity to activity was just your basic M.O. Yes, your kids are still going to want you to take them everywhere and do everything with them. Your social calendar will still have the potential to be as full as ever, if you let it. And, yes, the dentist, insurance agent, property owner’s group and others still want a slice of your valuable time.
Believe me, when I finished treatment and started getting back into my life, I was amazed at how much I normally handled. It’s like my life was coming at me at 110 miles per hour speed and all I could handle was about a 20 mile per hour pace. Sure, what’s one little cocktail party? I’ll just sit instead of standing and we will only go for 15 minutes…right 😊
Even adding a little 15 minute activity to your 20 mile per hour pace, makes an impact in your condition. How do I know? All of a sudden, all the side-effects that I thought I were over, started creeping back into my day. I would be at a restaurant and I could not get my hands or feet warm! Seriously, I was sitting on my hands and trying to sit on my feet! Hot tea in the summer seems odd, but I was ordering it frequently. The next thing I noticed was that I would have a day or half day, that I just couldn’t move. Have you ever felt like that? Your legs just feel really heavy and you can’t manage to put one foot in front of the other or even stand for very long.
There’s no gold medal for pushing yourself like you used to. Here’s the secret, your body needs to build its reserves. By sleeping, eating right, reducing the intensity of your activities, you begin building your reserves. When you over exert (?) you deplete your reserves. Simple? Not really. You must make a conscious effort to know when you are jeopardizing your reserves.
The real gold medal is seeing that you are healing. Your side-effects are diminishing. You are getting stronger! Way to go!!


Howdy! Peace be with you.

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Yes, He is listening! Why do we wait until something really bad happens to turn to our faith? I don’t know and it doesn’t matter, just turn. My sweet tennis team gave me a box of feel good items to help me get through all this muck. My favorite thing was a daily devotional little book called “Jesus Calling”. https://www.jesuscalling.com/
Call them tips, if you want. One of my favorite ones was about Peace. All my life, we shake people’s hands at church and say “Peace be with you”. I always thought it was basically just a churchy “Hi, how are ya” all these years. It was so easy, just turn to all the friendly faces around and give them a big Sunday howdy! Wow, was I wrong, but I’m so glad I finally figured it out.
Peace be with you means you are wishing someone peace from their worry about the future and their regret of the past. Boy can we all use this! We are in the fight for our lives. Do we really need to add regret and worry to the uniform we put on every day as we go to battle? Good grief, no!
So to all of you, Peace be with YOU.

 


It’s not that I don’t like you, it’s just my white cells are low.

Quarantine me – not just for world travelers anymore – If your white cells are low, quarantine yourself. This is another one of those things you can control and get an A++ at. Running to Walmart isn’t worth the serious virus or infection you could come home with. Go with me on this one.
Pretend you are on a Staycation. Watch all those #Netflix series you promised yourself you would watch. Try some new recipes. Start needlepointing a Christmas stocking (I did 2 of them). Stay away from hotels, stores, restaurants, schools period!
If people ask to come over, be honest, tell them you are at risk of infection. Who wants to be “that guy who made you sick”? After your numbers are up, let them come over. Just remember this does not mean partay! Any illness you get is more serious and complicated because it’s you and you don’t have much ammo to fight it with, so be careful!
So what can you do? I played tennis! I realized that I could be on one side of the net and the nearest human was over 100 feet from me! Score!!! Since I could not fly in an airplane or stay at a hotel, my husband and I drove to a friend’s condo and stayed there for a week together. We cooked, hiked, read and drove back home. All of those friends who have condos and lake houses, or friends of theirs who have condos and lake houses, or dear family members (distant or not) who have condos or lake houses, take them up on their offer to “do anything they can to help you”. As little of a trip as this sounds like, it gives you something to look forward to, prepare for and remember as your “happy place” when the tough days come.Slippers


There’s no Zagat rating for Cancer treatment centers

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There’s no Zagat rating for Cancer treatment centers, oh no! After you swallow the big “I have cancer” gulp, choosing where to go for treatment is your biggest hurdle. Not a high jumper, you are about to become one. My best advice is to cast a wide net, but where do you start?
A dear friend gave me great advice. She said, ”make appointments everywhere, call, call, call, and then cancel the ones you don’t want later”. So, I did just that.
First, determine what you are looking for. Is your cancer common and treatable just about anywhere (lucky you)? Is an experienced surgeon key to your survival? If yes, ideally, get a doctor that only does this procedure. If there are several treatment options, go to someone with knowledge about chemo alone, chemo with immunotherapy, immunotherapy alone or something completely unique. I called teaching hospitals (affiliated with a university), regular hospitals and for-profit treatment centers that advertise on TV.
Second, start asking questions. You should be able to speak to a nurse or a patient representative who can answer some of your questions. When I say make appointments everywhere, that’s because most places want you to come see the doctor, rather than speaking over the phone. Honestly, I just told them that I needed to make my decision within 2 weeks and it was impossible to fly all over the USA going to appointments when we can just do a preliminary chat on the phone. In addition, I got on the hospital’s website and emailed doctors and nurses directly.
You will be happy to see the pieces of your puzzle starting to come together naturally. If the center does not take your type of insurance, they may not be a fit. If they can’t get you in for an appointment and won’t talk to you on the phone, they may not be a fit. If they say they don’t really specialize in your condition, they may not be a fit. If you cannot easily travel there or pick up and move there temporarily, they may not be a fit.
Pick the appointments you want to keep and cancel the others. Go meet these doctors and their team. They are your new best friends and you need to feel comfortable with them. Together with you, they will save your life.


Cancer cells are cellfish

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Cancer cells are cellfish! Are these selfish cells cramping your Style? If it would work better for your calendar to come every 3 weeks instead of every 2, just say so. Sorry dear, it doesn’t work that way. There is a cycle to the growth of cancer cells and this is what determines how regularly you must show up for your dose of chemo.
Simply put, chemo attacks cancer cells when they are most receptive to the poison. Say a cell divides, it must grow a little bit, maybe 2 weeks, maybe 3 weeks, when it is ripe for chemo. Then ZAP, we give them a shot of chemo and they stop dividing. Mission accomplished. Wait, more are growing, wait 2 weeks and then Zap them again and so on.

Here’s where it gets complicated, you may be getting 2 types of chemo in your chemo cocktail, and one is on a 2 week zapping schedule and one on a 3 week zapping schedule. Lucky you, you get to go hang out and watch TV at the infusion center even more. Sure wish there was a punch card with a free gift at the end!

Face it, we are on cancer’s schedule. Our job is to do whatever it takes to keep ourselves strong enough to stay on schedule and annihilate as many cells as possible.

Happy shooting!


Ports are ImPORTant!

Port

Ports are ImPORTant! Just what you need, something else to add to your stressful situation. But wait, having a port can be your new best friend. All a port does is give easy, instant access to your system, rather than using your precious veins.
First, a port must be surgically inserted, and really they don’t fully knock you out for this (but you remember nothing) and it only takes 15 minutes. Most ports are inserted under the skin on the front side of your right shoulder. Even though your incision is not healed, you can begin accessing your port within days. Your skin will completely heal over the port site. There is nothing for you to take care of after it heals.
Why do you access a port? Mostly for delivery of chemo. It also is perfect for any blood draws, contrast for scans, IV antibiotics, during surgery or fluids, if you need them. Nurses love ports. It makes their job so so much easier. When the port is accessed (aka hooked up) the nurse uses a super sterile pack to clean and attach tubing for your treatment. Cream, what cream?? Be sure to ask for a prescription for Lidocaine cream. It numbs the area so you feel absolutely nothing when they access it. 30 minutes before your appointment to access your port, put a nice sized dollop on the skin that is over your port. Place a piece of Press-n-seal Saran Wrap (about 6” x 6” square or larger) over your cream and skin. This protects your clothing. Nurses will remove this and wipe the area for you. Have no fear, if you forget the cream, yes there is a slight stick, however it is nothing like getting an IV in your arm!
The good news is this saves your veins. Veins do not really like chemo. Some people say it hurts more to get chemo and fluids through your veins vs your port. This usually is because of the small size of your veins and the speed at which they have the pump set. If you do use your veins and it hurts, ask your nurse to slow down the pump speed.
Once you finish chemo, your only responsibility is to go to your infusion center or hospital and have your pump flushed with saline every 4 to 6 weeks. This kind of primes the pump, so to say, and keeps the lines clear so your port is ready to use when needed. If you are having chemo regularly, you are getting your port flushed at the end of each treatment.
Should you have your port removed when you are finished? I get asked this question all the time. My theory is I use it for scans every 3 to 6 months. Plus, in reality, I’m the only one that really knows it’s there. Yes, there is a little bump that can be seen when I wear a lightweight top or an athletic tank, but who cares? I also have visible freckles, wrinkles, graying roots and plenty of other things to keep people’s eyes busy.
Love your port. It really does make the situation much more pleasant.