And, so it begins… AGAIN!!

I sit here at 4 am writing this because I can’t sleep due to the steroids!! Had my 3^rd treatment Tuesday and have to take Dexamethasone, 2 pills twice daily, starting the day before treatment, the day of and the day after. This steroid effect will carry through today when it starts wearing off and I should be able to sleep well tonight and resume naps on what are usually my “worst” days which will be Friday through Sunday or Monday. AND… this weekend is the Blackhawks convention that I bought tickets for the boys for Christmas!!! We are staying at the Hilton downtown Chicago on Friday and Saturday night. I do NOT want to miss it as it will be so exciting for Jake (and John too!!) and I want to be able to experience this with them. There is an opening ceremony on Friday night then various sessions on Saturday and Sunday. I keep thinking that at least I can go to my hotel room at any time if needed to rest. I can come and go for different parts of the event, so this will be good. I wish I could enjoy a couple of cocktails and somehow make it really feel like a nice little family getaway, but likelihood is that I will not feel up to it. I think I may just have to google “alcohol with Compazine, my anti-nausea med (brand name for prochlorperazine) just in case I decide the Hilton has some good wine on their menu or can make a mean mojito!!! Shoot, no luck! The below effects do not sound worth it! Does not sound good.

prochlorperazine ↔ Alcohol (Ethanol) Moderate Drug Interaction

 Ask your doctor before using prochlorperazine together with ethanol. This can cause uncontrollable movements, agitation, seizures, severe dizziness or fainting, coma, very deep sleep, irregular heartbeats, and high or low body temperature.

So I talked a bit about steroids above and they are a very necessary part of this treatment to help with nausea and to keep other negative effects of chemo at bay. I almost wish I could take them a few days longer to carry through the rest of the bad days because I would rather be hopped up and wide awake with less nausea and fatigue. Reality is… you just can’t stay on them longer due to the other crazy side effects that they cause. And to think… John will soon be taking prednisone, another more common steroid, for his Crohn’s disease soon. He is having some issues and Doc says he may need to be on if for over a month until another new medication “kicks in” (he took predisone some 20 years ago for his Crohn’s for almost a whole year only to succumb to surgery to resolve the issues he had back then). This time around, no surgery but doc wants him to try Remicade or Humira as he has seen many Crohn’s patients do very well with it and even go into complete remission. That would be so nice for John!!! So as luck would have it, we will both be raging lunatics during the same time for my last treatment. That should be fun! The “roid rage” is real. Everything seems to bother you and you just feel like slapping people. I am happy to say that I have not given into that (yet!) oh, although I have given into some impulsive shopping tendencies during this time…  yes very odd. All I can think, is Poor Jake having to be around us during that time!! Love that kid!!

I will write again after the weekend to share more about our time with the Blackhawks and a little on how it all went for me dealing with the aftermath of #3, but until then, I will leave you with this great fable of sorts that represents a typical journey for those facing cancer diagnosis and treatment. This was posted by someone in one of the Facebook groups on Triple Negative Breast Cancer. It’s not very long and worth the read!! I kept thinking “so true!” and laughed quite a bit too. Enjoy!!

Have YOU been a cancer patient?

If so, I KNOW that you will relate to this (anonymous) piece that is floating around.

“What’s it like to go through cancer & treatment?

It’s something like this:

One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my husband – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Have a great weekend everyone! I know I will!!

Hello everyone. I am writing this on July 12^th one of the worst days of flooding I’ve seen around Hainesville and Grayslake in the 22 years I’ve lived here. Our wetlands behind our house are one big lake that moved halfway into our yard and flooded our vegetable garden. Bummer. I am certainly grateful that our house and basement are not flooded as many are. My heart goes out to those affected by the flooding.

A few cancer updates — I had a good week and expect this weekend to be great as well! Next week on Tuesday the 18^th I will have my 3^rd treatment with only one more to go after that. The good news is that last Friday, July 7^th, I saw my surgeon and an ultrasound showed that my tumor has shrunk by about half!!! That is fantastic news for me and ensures that the chemicals chosen for my treatment have indeed done their job. Yes, they are killing the cancer and making me feel horrible for a week or so each time, but I do bounce back and I know that I will be able to build myself back up afterwards. So, with this news, last chemo is August 8^th and then we are targeting August 31^st for surgery.

/kēmōˈTHerəpē,ˌkemōˈTHerəpē/

noun

1. the treatment of disease by the use of chemical substances, especially the treatment of cancer by cytotoxic and other drugs.

How many of you have ever googled any health issue, ailment, symptom, diagnosis, medical treatment for yourself, your sibling, your parent, your child, or other family member or friend?  Well yes, of course you have! So I google triple negative breast cancer often enough because there are studies and different research being done in this area of breast cancer (or at least there should be!!). Most of the time it is a study or trial for a new chemotherapy drug and its effectiveness on TNBC. Still not much good news on this front, unfortunately. Not much progress in 10 years which is so hard to believe. Anyway, when “googling” many different things come up about breast cancer and sometimes one click leads to another and another and before you know it you are spending way too much time at the computer, and you are no more knowledgeable than you were when you started! That’s the frustrating part… I did land on some interesting sites or groups and forums that talk about natural cancer remedies and forums where so many women decide that they won’t do surgery, chemotherapy or radiation because of the effects on the body. Heck they won’t do mammograms most of the time for the same reason. They may choose an ultrasound and a biopsy to confirm cancer. Then, they are off to treat their cancer with the help of YouTube videos and online info or an alternative care professional of some sort that they pay a lot of money for because insurance sure doesn’t cover it?!?! All western medicine is avoided, but the funny part to me is what they will do to try to cure themselves and boy oh boy some of the things are very barbaric and/or just plain silly to me and I can’t even imagine how these things could work. I’ve seen everything from coffee enemas (daily!!) to putting bloodroot black salve on top of breast to draw out the tumor. Okay, we are not talking about acne and drawing our pimples to a head here! Wow… so yeah, these tumors are just drawn out of the body and come right through the skin leaving a big gaping black hole. There are other things like medical marijuana and cannabis or hemp oil and studies that support the benefits of some of these things. I am not running out to purchase this myself (yet), but for those in a later stage cancer or for relief of pain, nausea, and many other symptoms as well as its potential to prevent cancer from growing… it can certainly be beneficial. I know that some who read this may believe only in natural treatments for many things, even cancer. Unfortunately with a diagnosis of “aggressive, fast growing, potentially fast-spreading” type of breast cancer… I really do not feel that I have that option. I also know that those who believe strongly in natural alternative treatments cannot wrap their head around how and why someone would use conventional western medicine and go through chemotherapy, radiation, major surgery, etc. So I think it’s just a matter of agreeing to disagree. Sadly, I even read about the miracle treatments that people fall for in Mexico and the Philippines paying 3,000 to 30,000 dollars only to live a few months longer and die. Family members are left to wonder if their loved one was just part of a scam (my guess… yep they were scammed). Sorry, but if there was a miracle cure for cancer we would all know about it. Some claims by alternative health experts would like us to believe that the doctors and pharmaceutical companies are keeping this information from us. And, I do not believe that all doctors nor big pharma are honest and have all the answers. I think we as consumers, as patients, need to look at all sides and determine what is best for us. I believe in integrative medicine over an all-natural alternative-only approach. Integrative uses treatments from western medicine such as surgery, chemotherapy, radiation and immunotherapy as well as more holistic treatments like nutrition, meditation, Chinese medicine, supplements, exercise, etc. I personally want to use an integrative, mind-body, approach that helps reduce stress and adds good nutrition including vitamins and supplements proven to help the immune system. Some of the things that I am looking into and or have started include yoga… meditation/visualization, vitamin D, turmeric, plant-based diet (or at the very least eating no processed foods, no processed sugars, etc.).  I really believe from what I have read that there is a high incidence of breast cancer for those who have low Vitamin D levels. This is very common for those of us who live through dark dreary winters. I had low D levels a few years back and took a prescription for awhile then maintained for a couple years by taking 2,000-5,000 units of D3 daily. I stopped at some point when I either ran out of a bottle or got sick with a cold and stopped taking and just never got back on the D3 wagon. Could a simple daily dose of D prevent breast cancer? Best to get out in the sun for 15 minutes a day, but taking a supplement works too. Well, I don’t know if it is the answer, but it sure can’t hurt. Caffeine and alcohol are other topics related to preventing cancer. Well I broke my daily 2 cup coffee habit after my first chemo treatment due to nausea and no taste whatsoever for coffee. Now, I am just having lemon and honey in warm water or green or chamomile tea. I have iced tea or cola out at restaurants. I am not a huge drinker of alcohol either and typically have a couple glasses of wine, or few mojitos or martinis every few weeks (or months) or so. I have read that eliminating all caffeine and alcohol could prevent recurrence of breast cancer, but I tell ya… no true studies were cited to convince me that this is really the case, so I will drink to that (mojito, anyone?). Everything in moderation. Sorry this is so long, signing off now… meanwhile I hope everyone in Illinois is safe and sound after the storms here.

I am almost a week out from my 2^nd treatment and I’m not gonna lie… this one was a doozie!! I was down for the count for days and days. I feel much better today, but still have bone pain (from Neulasta for white blood cells) and nausea has been nonstop for days on end. I also just have that very heavy lead in my limbs along with numbness and tingling. Very tired… naps were my friend over the weekend. I have been taking my meds (Claritin, Advil, Compazine…) to help but still haven’t felt great. With Neulasta at least I am escaping the fever and flu like symptoms from 10 years ago! Back then I’d also be very afraid of germs so I wouldn’t get sick with a virus or infection… so this is much better than that! Small victory there. Oh well… this is all to be expected I guess. On to the next two weeks where I should have a nice upturn and feel much better starting now. Fingers crossed…

It was Jake’s birthday on Saturday and I did not really spend much time with him because he went golfing with daddy, Gaga and Dziadzi. They did 9 holes, and Dziadzi didn’t golf but he drove one of the golf cars. I just could not go. It was hot and humid and I could barely sit up for long before falling asleep. Walking can be a challenge too as I feel off-balance, light-headed, and dizzy at times. Just sick. So, I stayed home and relaxed and then spent time with Jake in the afternoon when they came home. Later that night Jake went to the Grayslake fireworks with the Farris family and had a great time! On Sunday, I felt a little better and we made our way to Hooters for lunch as I do love the buffalo shrimp dipped in blue cheese. We had a nice lunch and then went to Menards for some parts for our grill. Then we went to see Wonder Woman in 3D. We liked the movie (a little slow for me at times) and overall it was a nice day together. I would have much preferred going on the boat, but that just was not possible this weekend despite the absolutely perfect weather!

While we did spend some time with family for Jake’s birthday, we didn’t really celebrate and sing happy birthday or have cake or anything. Next week I am going to try to have a little more of an official family party here since I will be feeling better. It’s also my nephew, Justin’s birthday, so we can celebrate both! And… we finally have a deck (after 22 years in this house!) and can fit people out there for a BBQ birthday party. Now let’s hope for no rain or we are going to have to squeeze into my house and order pizza instead of barbequing! I’d much rather enjoy time outside and use the grill that’s for sure.

I feel a bit disappointed in myself this past week for having a little pity party, but when I am down I know that it can only get better so that gives me hope during those moments. I wouldn’t be as hopeful without the great support that I have with my whole family and some really terrific friends. I am so grateful to everyone who checks in on me via text, on Facebook or by phone and for those who brought me wonderful meals. It’s great not to worry about cooking or going out to eat and since I still have an appetite most of the time, I am glad to have so much yummy food to eat. Thanks everyone!

So, my next step is to go to the surgeon this Friday, July 7^th to see if an ultrasound shows any evidence that the tumor is shrinking. I do feel like it is already harder to “find” but it is in an odd place and close to my chest wall, so seeing the size on the ultrasound would be best. If it has shrunk a bit… then the chemo cocktail is doing the trick! Not sure why the surgeon is the one who does the ultrasound, but I really like him and look forward to encouraging news at that time. I’ll keep updating as I learn anything new. In the meantime, I try every day to think of at least one thing… that makes me happy, that makes me smile. One. Thing. Even though there are always more. Things about Jake and my family and friends have topped the list on most days this week, but I have to say that my new patio furniture set with fire table has also come to mind! I just love it and can’t wait to start enjoying it!  Have a great week, everyone!

On June 6th I had my first chemotherapy treatment and all went well. You start with some steroids the day before to prepare you for the medicine, it is supposed to help with nausea and the side effects of the chemotherapy drugs. They give you Benadryl and some anti-nausea meds in an IV before they start the Cytoxin followed by Taxotere. All in all, I’m at my oncologist’s office for about 5 hours. The first 3 hours I am very sleepy from the Benadryl, but at the 5 hour mark, I am feeling good. Benadryl is given to prevent an allergic reaction to the chemo drugs (aka poison). The steroids are continued by pill on my treatment day and the day after. These steroids make you feel like you can conquer the world. You are revved up and pretty wide awake even at night when you should be sleeping!

So… now about a day after the steroids wear off, that is when you crash and burn. I feel like my body is filled with lead, its heavy, my fingers and toes and legs are tingling and numb (yes, from one of the chemo drugs). Also on the day after treatment, a new drug called Neulasta is given via a little box about 1 x 2″ that is placed on your stomach and a little needle inserts a small tube. Then, exactly 27 hours later, it releases the medication. This is to boost white blood cells which are always affected by chemo. I actually did not have this 10 years ago and would always get a pretty high fever for a few days. I would stay away from germs as much as possible and hope that I did not catch anything during that time. I did have to take antibiotics once. With Neulasta, my body can now just begin making white blood cells right away and keep the cell count up until next cycle of treatment which comes 3 weeks later. Neulasta has one side effect that is no fun… bone pain. I took lots of Advil to help with that. The next time I will be taking Claritin the day of  my treatment and for a couple days after. This will prevent or lesson the bone pain! who knew? Onc nurse gave me this tip so I’ll run with it. Who knows how allergy medicine helps… it just does.

The worst part for me is always the nausea… and while the steroids helped with that initially, after they wore off I did take my anti-nausea pills for couple days in a row!! I still have a queasy feeling a week later. I do have a good appetite and typically feel better after I eat, of course! One last side effect is that it does something to your mouth, tongue and roof of mouth mainly. It feels a bit numb and just weird. Kinda like when you burn the roof of  your mouth (or tongue) and it is healing… and I couldn’t eat anything salty.

I am now a week out from treatment. Aside from feeling fatigue, nausea, and bone pain, I felt pretty good. All these things did not stop me from enjoying time on the boat, with my family and the pool, at my nieces birthday party, and having lunches and dinners with family and friends. I just needed some nap time in between all the fun!

I survived my first chemo treatment and with the help and support of all my wonderful family and friends who helped in various ways, from bringing me food to keeping Jake busy… I can’t thank everyone enough. Keep checking in on me as it is truly nice to know that I am on your mind and that you are sending good vibes my way. This is all about keeping up a positive mental attitude and you ALL are the strength behind that for me!