Tag Archives: cancer treatments

Angelina Jolie


Angelina Jolie has brought Breast Cancer to the fore front.   Oh wait, it already was in the fore front of “cancers”.  What I meant to say is that she has brought Double Mastectomy’s to the fore front of Cancer treatments.  Oh wait they were already the primary part of treatment for most aggressive Breast Cancers.  I guess that is the Catch 22 of Celebrity….It seems she’s been  given credit for what thousands and thousands of others have done before her.  And I am not even sure she wants any of it.

She seems to have shed light on a subject that already has spotlights on it…The media has called her for her heroic, and Brave and many other adjectives that don’t really capture the true essence of what she has done….and that is, that she has made LIVING HER PRIORITY!!!! And that is to be commended.   What she has done, and I what applaud her for, is how she did all of this, and how she has chosen to tell the world.  After the fact. And her explanation was brief, and reasonable, and SMART!

Ms. Jolie was presented with “Life Choices”; the facts about her future and how they can (and probably would) affect her quality of life down the road.  Then she intelligently, thoughtfully and prudently decided to have a surgery that can be very traumatic for a women.  especially one so stunning and waist deep in the “appearance business”.  I am not belittling her decision in any way!  Having been there, done that…I am glad that she is showing the world that this procedure is not an end to “womanhood”, but quite the opposite.  It is a call to arms, against a disease that tries to rob us of that same feminine exuberance which fuels our desire to remain the force of nature we have become.  And for that Angie…I thank you…

I think back to a few years ago…Different from Ms. Jolie, I didn’t have a the same decision to make as she did, well not completely.  I could have had a single mastectomy…But the odds that I would be back for the second where, frankly, to great (40-60%)…So I threw caution to the wind and went for the full treatment.  Many I have spoken were to worried to do both.  Amongst those that I know, I am saddened to say a larger % have had to go back to remove the second breast as well.  I know that is not exciting news to hear…But I will say that many of those women wished they had done the dDouble the first time around.

We survivors are all “Beautiful women”…just  like Angelina Jolie, and with this surgery she had, we will certainly be keeping “abreast” of her situation for a lot longer…

Angie, I wish you all the best!

Enjoy Today

Carol

Funnycancermom

 

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Thank You Nannette Stueck


Over Thanksgiving weekend, my children, my husband and I were talking about sleepovers.  My son asked if I liked them and/or if I was ever scared to sleep somewhere else.  It was seemingly innocuous question.  Yet it caused the flash of a memory that I hadn’t thought about in a longtime.  It was almost movie like.   The memory was so vivid, and the emotions it conjured were so real.  So real I wanted to tell the kids all about it.  This is what I told them…

There was one time that I was afraid from being away from home.  As you know, I was diagnosed with Hodgkin’s disease when I was a senior in College. I was operated on around mid-December, and Christmas break was coming up.  It wasn’t easy or quick, but I made the decision to stay in Boston, and have the treatments there.  Away from my family.  The dorms would be closed for the holiday, so I needed to find a place to live for the month.  I guess I could have stayed in a hotel, but I didn’t want to be totally alone.  There was this other college senior I worked with at Copperfield’s.  Her name was Nannette Stueck, and we worked together at a bar between B.U. campus and Northeastern (where she went).  She and her boyfriend (now husband) Scott all worked together, and we had become somewhat friendly.  When I told her what was going on, she immediately offered me a place to stay for the month.  Her roommates would be going home for the break, and she didn’t want me to be alone for the holidays.  A single selfless act…

I was touched by her invitation, and moved in the next day, because two days later I was to start treatment.  I woke up at 5 a.m. and travelled via Trolley, then train to get to the hospital.  It was bitter cold, and dark, but I went.  After about 2 weeks, I began to feel the side effects of treatment.  Initially, food became tasteless. Everything I ate scratched my tongue and throat.  It was like swallowing extra course sandpaper.  Nannette decided to spend a day trying to cook different things that I could eat.  She made puddings, and jello’s and just a whole bunch of stuff.  It was unbelievably sweet.

A week later, I woke up because I felt a draft on my neck.  It was about 4 in the morning.  I got up and checked the window, but it was closed.  I checked the door to my rom, but it too was closed.  I couldn’t figure out what it was, but it was almost time to get up anyway, so     I went to switch on the light to the room.  It was then that I realized why I felt the draft, and I began to weep.  There, on the pillow, was a thick clump of my hair.  I couldn’t imagine that it would fall out like this.  But there it was Nanette must have heard me crying.  She came into my room and sat with me.  Told me you could hardly tell.  I knew she was lying, but she said it in a way that made us both laugh.

Nannette Stueck was my hero then.  She made me laugh and forget what I was going through!   Most people thought my decision to stay in Boston to get treatments was odd, at best.  But I knew I would never have gone back to finish my degree if I left.  I needed to continue, to go on as though nothing was wrong.  Because the alternative was that everything would stop.  My college career, and my life…And Nannette got that.  She saw I was right to do it, and made that month okay…Fun even!

It has been years since Nannette and I were in contact.  With Facebook, I have hoped that I would find her over the years.  I try.  I put her name in, but nothing comes up.  So Nannette Stueck of Ridgefield, Ct who is married to Scott from Sudbury, Mass (maybe Swampscott…I don’t exactly remember where in Ma. Scott was from.  Though I do remember the gorgeous church you got married in).  Because of you, I put every effort out to help others; whether I know them or not.  It is a truly fulfilling feeling to help others.  I thank you for introducing that to me!

Nannette, I hope you are well and happy!  I would love to find you, but understand that I may not.   I want you to know that I tell my kids about your kindness all the time!  I hope to one day say THANK YOU in person!  Your selfless act o kindness changed me forever.

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House Cleaning


Holidays are coming. Gifts are being wrapped, and I am making room for the new purchases. I am always surprised at how great it feels after I have finished a good purge. I feel accomplished, I feel organized, and ready to take on anything that comes.

The last few days I have done a different kind of house cleaning. Today I am going for my colonoscopy. So when I talk about cleaning out the house…I referring to my own inner house. An odd thing to write about, but let me assure you I wish I knew more about it before my first one (20 years ago). The preparation is key and really the trick to make this not so bad – and yes, like my chemo, can have some real upsides!

First of all — know your “prep” options. Some gastroenterologists still stick with the old fashioned “go-lightly drink” In my opinion absolutely fowl!!! Another drink is the Magnesium Citrate (just a medical term for YUCHY!) Now I am not saying these two methods aren’t affective,; cause they are! But they also take a toll on your whole body leaving drawn, tired, and generally feeling poorly.

About 10 years ago, I was introduced to a new method – “Visicol Pills” This was a huge improvement. They are horse pill size and you have to take a lot a short time (along with a gallon of water)…but I didn’t have to drink that nasty stuff. Then 3 years I was introduced the Miralax and Gatorade prep. It absolutely does the job, while simultaneously replenishing your electrolytes. You do not get that same draggy, yucky feeling.

Okay and here is the pitch to get your colonoscopy when you are supposed to — Early detection is the #1 defense against colon cancer. And if that doesn’t convince you here is the other reason (and my favorite one)….

Yesterday when I started the “prep” I weighed 7 pounds more than I do today…THATS 2 WEEKS ON WEIGHT WATCHERS!!!!!

So when it is time for you to get your intestinal house cleaned, remember there is a light at the end of the tunnel…or just know you are lighter at the end of the procedure. In my book, either way, a win win! Viva La Purge!

Enjoy today

Carol

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Roller Coasters


Ever since I was a child, I have always hated roller coasters. The unsettling up and down motion, the side to side jostling. All motions happening simultaneously – which makes me feel totally and utterly out of control. Needless to say, this is a feeling I am not comfortable with.

But if you ever wanted to know what having cancer is like — this is the closest thing. You are never balanced, or on sure footing. One day is good and the next day, well, not so good. Equilibrium becomes a thing of the past.

When I did the double dosing and got so sick I have been silently concerned that I have really destroyed some vital functions – my liver….who knew this could possibly be a side affect. I am a side affect individual…I get side affects listed – after that is how I got Breast cancer. It was a side affect of the radiation treatment I had when I had cancer earlier in life. So I should have paid more attention to the other side affects.

After the double dosing they did some blood tests to reveal that my functions were not what they should be, but hoped it was a temporary glitch — (which I still believe it probably is). So to double check they had me do follow up tests. Which I did yesterday. The good news is that a lot of the tests came back in the normal range, but a few still seem to be off. So I must head back today for a shot of a drup called Nupagin. It will help boost my immune system. It seems my white blood cell counts are very low so I am at risk of infection.

All in all not terrible, but still I feel I am being thrown up and down and side to side — just like roller coasters and I hate it. But there is an up side – at least I don’t want to throw up! So that is a positive!

In case you don’t know, I have decided to start a foundation titled THE CANCER MADE ME DO IT1 (Gee I wonder where I got the idea for the name?) Which will be a fundraising organization with the purpose of raising and redistributing funds to 6 charities. It is a venture of love and a project that keeps me grounded. Having a sense of purpose keeps me “stable” and my equilibrium in tact – which is in great contrast to all this other stuff.

I will being talking about this much more in the future.

Enjoy and stay on solid ground!

Carol
@funnycancermom

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KEEP IT MOVIN’


Please forgive my absence for the last several days. The duties of motherhood superseded my life as a cancer patient. And frankly it was a great diversion; especially after the awful week I had prior due to the double dosing. And as I had said, I did that so I could be full strength when my family was back together in August. Right reasons, wrong decision, and we are moving on.

Having to go and do for the kids this week was great. Visiting day was yesterday, and I wanted to get all the things they wanted (or really I wanted to bring them) – so, it gave me a reason to get back on task. So I decided it was time to get my schedule back to the way it used to be. Back before “Chemo” was part of my daily life. So Monday morning I went back to Pilates. It used to be part of my weekly routine. It was awesome. Being stretched and pulled in ways you don’t really think are “anatomically” possible has true restorative powers: Even if my muscle’s seem to wobble for a few days after. That one act of ambition, lead to many more. I walked on Tuesday and Wednesday, and Friday; and even went back for another pilates session on Friday.

All that excercise had “steroid like powers”. After a week of feeling good and exercising I truly felt energized. Friday I basically left my house at 8:30 and didn’t get home until 6. Then friday night I went out for dinner with friends. And I still had energy. Saturday morning Scott and I got up at 5:30 (yes a.m.) drove 2 1/2 hrs to camp; where we spent the day doing activities with the kids (I admit I watched a lot more than I participated), and in the afternoon all 4 of us went swimming in the lake. And just as a side note, for me it is a lot easier to be seen in a bathing suit in front of people I don’t know, cause I won’t see them till next year and they may not remember that I was the white whale in the cheetah print (sublety is my speicatly) bathing suit in the water. After we said our good bye’s we drove home changed and went out to a party. And I still feel like I had energy. I can honestly say, I am a little tired today, but I think after a few days of running like I had — even a “non-chemo using” 49 year old adult would be tired.

So it got me to thinking – maybe exercise is good for the mind as well as the body! HMMMMMMM! It is a concept, and one I will take under advisement. It is not that I want to be rash and exercise every day — but this can truly be the start of something great — and maybe even take off some of this chemo weight. I just want to lose a pound, OK, maybe eight. Oy did that additional drug cause a glitch in my mind — I seem to want to rhyme. Oh, I will worry about that another time.

I’m back and happy to be so!

Enjoy the day!

Carol
@funnycancermom

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Lost In Translation!


As a child I was taught the 3 R’s – Readin’, Ritin’ and Rithmatic. Notice there is no E for english. After I left college, and entered the business world, I discovered that all of these subjects (as it were) have subsections. You know, like Business English, Retail Math, Legal Jargon, Scientific Math, Medical English….It all comes down to the fact that when it comes to words you have learned, you have to figure out which subsection the “appropriate” translation to use.

While I was in the garment business I learned that $2 plus $2 = $-5 (if you are the wholesaler) and +$10 if you are the retailer. I know it is very difficult to wrap your head around this equation — but it is absolutely true. Retail math just means ‘take a whole bunch of numbers and make sure the wholesaler pays the retailer more money than the retailer pays the wholesaler.’

Legal Jargon is another form of english, but with a lot of “here to fore’s”, “Forth with’s” and “parties” thrown in. That is just to confuse the party in first part from knowing what the party in the second part is talking about.

And then their is medical english — by which a simple problem becomes an “Itis or an “Osis.” Or a commercial for an acne drug that lists 87 side affects or conditions that could occur. I have gotten good at translating terms. Trying to translate these languages into other terms I understand got me thinking about other language subsections I have had to learn. Obviously there is a whole chemo language — “dose-dense” and CMF, and protocols, and the list can go on. But what about my day to day life. Do I need to translate things in my regular “mommy” life. And then I remembered the postcard I recently got from my son.

Camp is great and the kids are having a good time, but sometimes the counselors make them stop what they are doing and write a letter home. A silly concept, but one that is done at most camps. Matt is not always the best eater. He is pretty much a starch and sugar kind of kid; Though you would not know it from his 95 lb – 5’2′ frame. Anyway I figured eating would be a sporadic thing at camp. Matt also is not the best writer, so making him write a letter quickly you are not going to receive a literary masterpiece of any kind…as long as some english is involved, it is okay; because I have learned to translate his language as well.

Our 1st letter from Camp this year read:

Dear Parents, (showing his obvious attachment to us as individuals)
Camp is great. The food I can barly eat.

Love Matt

I was overjoyed…He tried Barley….of course not, he didn’t like the food. I get it….

Then I remembered his first letter last summer. One I must frame for later in life. summer at camp. It is where I realized Iam a gifted translater. This is, and will remain, my favorite letter from camp.

Dear Mom and Bad (yes he meant DAD):

I am here and the Wheater is God.

Love Matt.

I smiled because I thought what a great letter. Later that night, when my husband got home from work, I showed him the letter. I was so happy about it. He read it and then spent about 20 minutes just contemplating the meaning…he was trying to figure it out. What could he be talking about….REALLY? I thought it is a great note. Scott was just perplexed by my enjoyment of the letter. “What is he talking about?” he asked. REALLY?

It obvioulsy says “The weather is good.” So now I use the wheater is god! as a standard response to things — and yes it is an inside joke to me. But we now have a new subsection language to add to the list of all the others — and is called “Camp Language.” Which frankly I find funny and enjoyable and in the realm of things — not so scary.

Enjoy and I hope the Wheater is God by you!

Carol
@funnycancermom

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The wish you want can be the one you don’t!


This week I learned that “Getting what you want” is not the same as “Wanting what you get.” I was so hard pressed to move up this one treatment to a two week “dose-dense” treatment, I never really thought it all through. I wanted to move them closer together for a few reasons.

First, my husband is taking a week off when the kids arrive home from camp. I was thinking that if I had chemo that week, it wouldn’t be much fun for the family. I think that it would be nice to have everyone home and happy and energetic..so that we could be a “normal family” for a week.

Secondly, I thought it would be sad for the kids to get off the bus, and wee me the next day all yucky from chemo. MY intentions were all solid.

And the final (and, yes, selfish reason) was that it would move up my FINAL treatment to the day after my 50th Birthday. What a great Birthday gift for me it would be.

Now that I have done it, I am not certain I really thought all of this through. It will be great to be all together the first week, but the week after I have chemo and no back up. The kids are not in school, and many friends will be away – so they will spend the week inside and bored. They will get to see me “sick” first hand. Not that they haven’t seen me up until this point, but this is just 24/7 of me not great…and I didn’t want that. I have enjoyed “Supermom” status up until now. I am working on a solution this problem though.

Moving up the chemo 1 week also overlaps with my husbands birthday. And while that may seem okay, he really has been so great that I think he deserves a night to celebrate him and all he has done for me. But I kind of messed that up as well. He isn’t upset about it, I am.

And lastly, and the biggest issue I face today (and the last 2 days) is this course of treatment has really made me feel pretty weak and gross. I have gone through this whole thing feeling relatively okay, and because of a desire to finish “a little” earlier — I have lost a little of my “swagger” so to speak.

None of this is awful, or debilitating, but I am definitely not myself. I am neither happy nor sad; I am not bubbly or blue; and I am not spunky nor sick…I am feel achy and abnormal. I am just BLAH! Not a word I would ever really describe myself as. I am sure that I will bounce back in a day or two…but, admittedly, I wish I would have just left well enough alone.

During this whole time I have never wished for not “being sick”…because I am and what would the point be. I have not regretted the decisions or the path I have taken with my illness. And I most certainly don’t take any of the moments with friends and family for granted. I cherish each and every one. This illness has motivated me in ways I could not have ever imagined…and I am so thankful for that. So I got a little greedy in a way. I wanted my chemo and my wine too — and I have learned that I can’t “always” have both – just because I want to. So I will not up my treatment again. This is a one shot deal, and I have learned much from it.

So I guess the old saying is true “Be careful what you wish for. Because it just may come true – but not the way you think!”

Enjoy today.

Carol
@funnycancermom

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THE SOUNDS OF SILENCE!


It seems that my daily schedule has been altered by my chemo treatments. My internal schedule that is. I used to wake up around 6:45 a.m. And get in bed around 11:00 p.m.. Now I find that I am usually fully awake by 5:45 a.m. And passed out by 9 p.m. At first this time shift was like any other “jet lag” scenario. It definitely took me a few days to get my “footing”. And I mean that literally as
well as figuratively. At 5:45 my house is pitch black; so the first few mornings I found myself stumbling around, constantly banging my toes against something or walking into some wall I couldn’t see. My house is definitely seems smaller in the dark, or I am just messier than I think (both very possible). Several mornings in a row I found myself standing in my closet trying to stifle my scream from the pain from stubbing my toe on a pair of shoes or the foot of the armoire, or just tripping over the clothes I left on the closet floor. After the pain subsides, I would make my way to the bathroom or downstairs. I was up like a pup!. Awake in an absolutely silent household. Frankly, not an experience I was used to.

What does someone do in the morning; Before the kids are up or my husband is awake – before the the general noise of daily life begins? I sat silently to ponder. And there it was again. Silence!. I wanted to scream with joy- but that would break it – the silence that is.

So, instead I thought I should figure a way to try and use the time wisely. I sit and think; think about what is, what was, and what can be! And realize “Wow I sound really profound at 6 a.m.!. Ok Obi wan!” I think, “what else could I be at 6 a.m.” I look around my living room, and think that I could go through that stack of papers sitting on the dining room table – or at least organize them. Nah! That’s quick work I can do that later. Oh, I could empty the dishwasher!. No way, the clanging of the plates would surely wake up the house. I could organize and pay the bills. Do I even need to say why that is a No!. Or I could just sit here with my feet up, stare about the room and write my thoughts down!. BINGO!. A perfect morning activity. This will get the mind flowing, and keep my body stationary in order to fully accept the affects of the caffeine entering it from that oversized morning cup of joe!. I can ruminate upon the day to come, and try to envision how I will fit in all the things I need to do; or how I can ignore them and do the things I want to do.

Wow, my head is spinning from all this thinking, maybe I should just go bed for a few hours? Let me think about that! It’s 7 a .m. Enough thinking! Now doing!

Enjoy the day! And make everyone count!

Carol
@funnycancermom

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It’s My Treat! (Ment)


Me and my IV pole - I call him Henry

Today was treatment number 3! Yeah! I am almost halfway done. Wow where does the time go, it was just yesterday I wasn’t even scheduled for Chemo…Good Times! Good Times!..

Seriously though, I don’t think I have walked you through my treatments, and today is as good a day as any. I usually arrive at around 9 a.m. So far my friends Elaine, Meredith, Julie and my Mom have been my companions. I try to warn them before hand that they may see things that aren’t the happiest or easiest to take…But really the worst they have seen so far isn’t the patients, it is the fat hanging over the top of my jeans. And while you may not think that so bad — trust me I am often reduced to tears when seeing my own horror of blubber, so could you imagine how bad it is if it isn’t your own muffin top! Yikes.

I am usually greeted first by my nurse Nancy. She is a beautiful and funny woman. With a smile that really lights up any room. Her red hair and blue eyes make me believe that she has an Irish or Scottish background. The fact that she can sometimes speak with this sweet rhythmic Brogue – could also suggest that. But her humor always puts me immediately at ease. Even though it is her job to put me on a scale every time I am there. After the blood pressure and a few questions my Dr. comes in — Also a Nancy — coincidence…I think Not.

Dr. Nancy is a far more demure person by appearance; which is deceiving, because she too has a great sense of humor. She asks me questions about my last few weeks, does a few blood tests, answers any questions I have, re-states some rules (ones that I know but she so rightly knows I am ignoring), and sends me off for treatment. Like any regular Dr.’s appointment so far.

When I go upstairs to the treatment room, first you walk into a reception area to check in. It gives the nurses time to put in my cocktail order. And no I don’t mean my Cosmo. Though, wouldn’t that take the edge off. They mix up my drugs as I arrive, so everything is fresh. It is like a farmers market for chemicals in a way. Anyway, while we wait we get to watch this tropical fish tank. Filled with 3 fish and a big reef. Goldy – the big puffer fish, was being tortured today by a little blue “Dory” fish, and a Nemo. Meredith, Elaine and decided to speak (and use accents) that depict how we think the fish would sound (of course if they could talk) This activity kept us quite amused for the 10 minutes we waited. I even got a picture of Goldy, the bullied fish, and his attacker.

Goly (the big one) and the Bully

After our wait was over we entered the treatment room. I was lucky to secure the same spot. It is a corner chair with a lovely view of the Hudson River. The room itself, in decoration, temperature, and vibe, is cold. That is definitely something they should work on! Not that it needs to feel like a party room, but it should be a little warmer in feel anyway — more inviting. Cause frankly no one is coming there unless asked to —

After I sit, the nurse brings over my 1st infusion and pills to get me started. In all honesty, putting the IV in and taking it out is the worst part for me. It seems so trivial but it is these two acts that bother me the most. Luckily Henry, my IV pole, is with me every step of the way…even if I have to go to the bathroom. He can be a little smothering at times, never leaves me alone :). After the IV is in it is really a cake walk. I get chilly, but they supply me with heated blankets. I feel every home should be equipped with a blanket warmer — the moment a warm blanket is draped on me, I forget everything for a few moments! And that isn’t the chemo talking.

The first drip is just to hydrate me, and I will say that I feel a little lift from it. After about 1/2 hour they push in 2 different medicines into the IV. First the Methotrexate – which I don’t even notice. The second is Fluorouacil (or 5FU). The F.U. part is appropriate. While they push this into the IV I get the weirdest sensation – pins and needles in my nose, over my eyebrows and on top of my head. Kind of like a Wasabi headache. Then the final drug is a 30 minute drip. This is cyclophosphamide. Also rather inert as far as side affects go. Then the hydration continues for 30 more minutes and I am good to go.

I definitely get a little tired for a few hours, but the steroids that I took, when I first get in the chair, begin to kick in. They won’t wear off for a few days so I will skate along until then. I am presently packing my kids for sleep away camp, and that is way more torture than the Chemo. The packing that is, not the sending them to camp. The bags leave Saturday, so I need to get a move on. Frankly the steroids have me hyper enough that I may work through the night.

Timing is everything! And with only 5 times left to go, who knows what I can accomplish next time!

Talk to you soon

Carol
@funnycancermom

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