Avoiding the blog.....UPDATE on the bobbsy twins and their battle with cancer!

Hello everyone!
So this blog started out as a way to update my family and friends and then I went into "procrastination" mode--not updating it for months!  Sorry about that-- here's the latest!

MOM and I finished our chemotherapy's in mid/late April. HOORAY!  We both suffered majorly with the third and last doses, and it continues. (We took 4 rounds of Taxol, two weeks apart.)
The side effects were different for this 2nd chemo. Taxol affects your nerves and gives nerve pain in feet and legs. Numbness and tingling in feet and fingers where the tiniest nerve endings are. Both of us still have numb feet!!  We don't know how long it will last, and for me, it is quite annoying. But there is no Chemo Pain everywhere like there was for Andromyacin (the last chemo chemical we took.)  So we thank God for that!
Mom continues with chemo related anemia and fatigue. I am not nearly as fatigued as she is. I am definitely tired at the end of the day, cannot paddle a kayak for more than 7 minutes at a time, and am horribly out of shape! In addition I have pulled something in my left foot due to the neuropathy and limp at the end of the day. I am trying to do as much as I can to get back into shape, lose the chemo/steroid weight, and fit into my clothes again!!!  Eating a healthy, low fat, organic diet of fruits and veggies is the key. AND IF YOU COUPLE THAT WITH EXERCISE,  IT WILL CUT OUR RECURRENCE OF CANCER RATE BY 20%!! THAT'S A HUGE INCENTIVE!
MOM lost 30lbs during chemo due to lack of appetite and from her diverticulitis, which was a horrible way to lose it. But she looks great and it's healthy to be thinner. Her loss however, was my gain!  UGH!

NOW WHAT?

Now that chemo is over, Mom and I are under a radiation doctor's care a few miles from her condo. Dr. Gauwitz of the Countryside Cancer Center is a gem! He is treating the both of us for our next phase:  30 RADS.  That is, 30 radiation treatments to our right breast. (5 days a week for 6 weeks.) We are the first "mother daughter" team he has ever treated!  I pick mom up every weekday and OFF WE GO!  We are only there for 25 minutes total!  We walk in together arm and arm smiling and laughing at our pitiful plight!
The nurses and receptionists say, "You guys are sooo cute! "  (smile)
It is nice to be doing this part of our treatment together, because with chemo we were separated.

Linda and Russ (my sister) and their two children were faithful in getting Mom through chemo. They left their unfinished house being built in NC to come live with her and take care of her during her treatment. They had to go back a few weeks ago. Zoe and I have taken over now.

WHY RADIATION TOO?
Ok- here is the scoop on radiation. The chemo cleansed out any rogue cell that may have been in our bloodstream waiting to "set up shop" and grow a tumor in the future. But it didn't necessarily kill off the "tumor site" cells that may come back again in the right breast. The radiation will take care of that.
Side effects include fatigue in the last two weeks, (great) "sunburn", peeling, itching, at the site.
NOTHING COMPARED TO CHEMO---YAY!! 
For me burning is a bit worrisome though because I had planned out my Farm Camps here at the farm in February, thinking I'd be done with radiation by then. Instead, this coming week, and then my last two weeks of radiation, will be during my June farm camps--in the outdoor Florida summer heat, sweaty, itchy, burnt! YIKES.
But I can't disappoint the kids. They come from all over to be at farm camp for FARMER and ANIMAL FUN. LOL   I will get a cooling apparatus to wear around my neck, and make good use of the fan and misting system in the barn!


WHAT HAPPENS IN THE RADIATION ROOM

We go inside a room that has a 10 inch door that closes is off. When I realized I was locked in behind that door, I got panick'y'.  But the room is big, not a closet or anything, so I soon calmed down. You strip off your robe, (top naked) and lay on this narrow table with you hands stretched over your head. The radiation techs measure you and mark you with a marker on you ''cleavage'' and on either side of your chest. There are two or three of them hovering over you while you lay there "hanging out!" hahahah
This big ''monster'' of a machine comes gliding around and positions itself to the left of your body. They all leave the room and say, "Here we go, be right back." And that big, thick door shuts. The monster machine then makes this ehhhhhhhhhhhhhhhhh sound for 30 seconds while you lay still. It is radiating my boob.
Up above where I stare straight up, on the ceiling, is a tropical beach and water mural with lights behind it so it looks very real.  I imagine myself there, kayaking and swimming in the waves. It's my coping technique.
Sometimes, as I lay there, I talk God and let him know that I'm scared. I'm scared that the radiation is going to harm me, or that the big, thick door will never open...... I'm scared the cancer will come back and that my boys will be MOTHERLESS...... the fears are real... they are a part of the journey.....THEN... I pray the fears away....
DETERMINED TO BE A SURVIVOR AND TO NOT LET FEAR RUIN MY LIFE!

"Can any of you add a single hour to your life by worrying?"

"If God be for us, who can be against us. " 

"When you pass through the waters,


I will be with you;

and when you pass through the rivers,

they will not sweep over you.

When you walk through the fire,

you will not be burned;

the flames will not set you ablaze.

you."



OTHER NEWS!

Some of you know that I was given the news that my son Paul, and his wife Nicole, who were married in December, are expecting!! I 'm going to be a yia yia!!  Please don't call me grandma! I'm not ready for that!
I'm thinking NANA, or MI Maw  LOL

I also sold my pontoon boat (which was too big for me to learn to drive, ) and bought a kayak inventory from a company that was closing up!  The weird things you do when you are faced with life's challenges!
I am expanding our birthday party events to include kayaking! 
NOAH'S ARK BY LAND AND BY SEA!  HAHAH
http://www.mykayakparty.com/     is born!   We already do the best birthday parties for little ones with our Farm and mobile petting zoo to you. Now, we will offer tweens and teens kayak birthday parties in different locations all around the Tampa Bay Area.  What a great way for me to get back in shape!  weeeeeeee

And.... MY HAIR IS GROWING BACK!  WOO HOO ( A bit grayer than I'd like!) I even have eyebrows growing in... now if I could just get some eyelashes!!!   hmmm falsies?


Dear friends, thank you for remaining faithful to my blog, for encouraging my on FB and in real life, for dinners brought over, for love and kindness shown to me, and my family.
Continue to think of us and to lift us up in prayer. We are not done fighting this wicked disease.

I   need strength to get through the rest--(and my Mom) I am tired. But I will not quit. xxxxxoooooooo

It's been a while!

Well the month got away from me and I'm catching flak (sp) for not writing in my blog!

Here is the latest:  Mom had her fourth and final dose of AC on Wed. Feb. 17th.  She had a very hard time this time round. Her white cells dropped so low, she had to have a blood transfusion a few days ago. That has made her feel better, and able to get out of bed too. Her fatigue and weakness were incredibly bad, but she sounded better today and is going to pull out of this! Mom will have four more doses, but of a different chemo, called Taxol. She will have another week off before she starts her Taxol round.

I had a bad reaction to my 3rd dose of AC at the end of January. The lining of my stomach was burning and irritated and severe pain everday. I was put on 'gerd' meds. That did not take away the pain.
My Dr. said I should skip a week and see if I healed enough to try the last dose of AC in my 3rd week (instead of the densley dosed two week interval.)  In my 3rd week since my last dose of AC, (Feb. 14th)
not only was I not completely healed, but we went away to the Extreme Polynesian Beach House.
My doctor said, "let's start fresh with your new chemo Taxol, when you return--Feb. 23."  The regimen for both mom and I is 4 doses of AC, then 4 doses of Taxol. Two weeks apart.
So that is what I did-- I received Taxol on Feb. 23.
I thought I was going to get lucky--because the day after my infusion with Taxol, I was feeling fine!
And, though Taxol is a highly allergic chemo, (major doses of steroids must be taken the night before) I suffered no "reaction" during my infusion either. Let me tell you, I was so terrified, I questioned my faith!
So I had to praise God all the way home-- "no reaction!"
But then... it hit me. From Thursday till now, (Sat. night) I have had the most exruciating bone and joint pain in my legs, knees, hips, feet, ankle, arms, ribs..... horrific. The on call oncologists have me taking Percocet.
It really doesn't make a dent in the pain. Advil partners with the percocet, but again, not even a dent.
I haven't slept, and I really am done with being in pain!  I am hanging on by the grace of God almighty. Otherwise I would go crazy.
To make matters worse, my good friend was killed in an auto accident Monday morning, and as if I wasn't upset enough over that and my Mom, my brother David had a seizure that sent him to the hospital these last two days!  He is going to be ok, but too many things at once== and all while I'm trying to deal with chemo pain.  Pray hard for me, for all of us. It's been a rough week!
                                  I know you all are, just reminding you, thank you!
I hang on to the hope that there are only three more doses left--- THREE!  But my good ole doc will have to get me on some type of patch to deal with this pain for the subsequent treatments. I can't bear to have my children hear me moaning in my bed anymore. And it's just not acceptable to suffer that much.
So pray for the Dr. to have wisdom in dealing with this horrible side effect. I read on the Taxol site that
numbness and neuropathy in the hands and feet is the common side effect of TAxol , and the pain I'm feeling is UNCOMMON. Wow.   
And pray Mom does not have this side effect when she starts Taxol-- I'm sure she won't. I'm just "sensitive."
Mom and I will now be on the same schedule / chemo week (unless one of us has to skip again.)
I am simply one dose ahead of her. She will receive her first Taxol on March 10, while I receive my 2nd does March 9th.
Losing my good friend Sue has awakened me once again.... to the idea of living everyday as if it were your last. To the practice of hugging and expressing your love and appreciation daily to all around you.
To saying the words, "love you" often. Dance like no one is watching! Sing karaoke! I do! Have no regrets
and praise God everyday-- he is not the source of our troubles, but the comforter when they come.

"I will lift up mine eyes unto the hills, from whence cometh my help.
My help cometh from the LORD, which made heaven and earth."

 Now let's talk about our vacation!! see below

I am sooo glad we seized the opportunity to go away from Feb. 14-19th with the whole family to an incredible island off of Long Boat Key called "Jewfish Key".
I landed an incredible deal thanks to a wonderful lady who owns the property. All of us descended on this "heaven" on earth beach house that looks like the Swiss Family Robinson Tree house on STEROIDS!  the island is only 1/2 mile long with trails through the woods. Only four houses on the whole island, Two vacant. One had renters for the week that we met. Then there was US!  We had our own private beach, dock, boat to use, kayaks, the whole house-- paradis!  The boys had so much fun and needed the breake just like the rest of us. Mom and Linda had a ball! Zoe and Billy even joined us for a day and a night! Valentine's night was sooo special on our own private island!  

Priase God for such an awesome time-- and the renewal of  strength to be able to get through some more chemo! 

Jan. 20th--2nd round for MOM, Jan. 26th, 3rd round for me.

Mom did well with chemo last week, but continues to be fatigued. Her white blood cell count was 1.4 today, a week after chemo--very very low!  We are worried about her and our praying it goes back up, it should, as her Neulasta shot kicks in. Otherwise, Mom has little pain, and little nausea, which is a blessing.

I did my third round of chemo yesterday, Tuesday the 26th.  I really didn't want to go. I forced myself!
At 8:30am I was pricked in the port in my chest to have my white blood cell count taken. At 10am, I saw my Dr. I told her that I was ready to quit!  She said NO WAY!  I said, "Then fix the pain in my back that makes me cough for four days!" She told me to continue taking Prilosec, as the pain could be severe reflux that chemo exacerbates. GREAT!  She said my white blood ount was 8.7, very good. (under 2 you don't get chemo)
Tonight, that pain is back, and excruciating-- typing this is hard.  :(   Flu like symptoms and eye heaviness has started. oh boy.

ON a good note, I went to the Moffit salon and got my new wig right after chemo! The stylist shaved the chicken plucked scalp of mine and fitted me into the wig. OH WHAT A hot mama!  LOL 
I still mainly wear my stylish kerchiefs, my turbans (Jamie said I'm from the desert) and my hats. But when I want to feel normal, I can slip on the wig and have hair!

I am praying for pain relief, join me. And pray for my mom. I don't want my mom to suffer anymore, and I want the cancer to be killed all over her body. If we agree, it will be so!
Keep my boys in prayer- this is hard on them.
Keep my businesses in prayer- that I can keep them running. If you want to help--long distance,
book your travel and go shopping on my booking engines. Always check my prices, competitive with Expedia and the like. And for shopping, big deals in 700 stores that pay YOU, cashback, all for free
Check it out, I appreciate it very, very much.
http://www.zamzuu.com/Default.aspx?wa=marousa

Local friends, please refer my Farm and Petting zoo to you, to all your friends, churches and festivals.
http://www.noahsarkonwheels.com/  

ok enough of the business plugs!  (HEY, a Girl's gotta feed the kids!)

I love you all, I appreciate your caring-- (Natasha, Joe Mango, Linda, Zoe, and my children's school have brought meals here, more than once and you are ANGELS ON EARTH THANK YOU!)
FB friends, thank you for your words of encouragement and supporting me! And visiting me!

FYI
(treatment plan for both mom and I)-- 4 doses (rounds) of AC, two weeks apart. I am on my 3rd dose, Mom is on 2nd.  Then Three week break! Then 4 doses of Taxol, two weeks apart.
That concludes our Chemo! Mine will end on April 20th. Mom will end a week later---IF we get all of it on time and remain healthy.
THEN WE HAVE TO DO RADIATION TOO. 6 WEEKS. UGH. That will go right into the farm camp I do here on the farm-- not good-- summer income needed. But I will get help and keep it going. The children are already asking to sign up from all over, and I can't disappoint them!

Linda, Marousa, Mom and Zoe Dec. 12, 2009- Paul and Nicoles sunset wedding

But let's end on a positive note:  GOD IS STILL GOOD, HE WILL SEE US THROUGH WITH ALL OF YOUR THOUGHTS AND PRAYERS.  Love to you all, and We shall overcome!
                                    
                            I see the light at the end of the tunnel!

2nd round of chemo for me--Jan. 13th HAIR TODAY GONE TOMORROW

Jan. 12th.
I went to Moffit to get my blood test, and see my Dr.  I discussed my symptoms of the cold, the chemo two weeks previous, etc.   She gave Ammend for nausea, Z-pack for upper respiratory infection (can you believe I got sick?) I haven't had a cold in a year! And said, "Report here for chemo tomorrow."
   
Wed. Jan 13th, I woke up this morning and true to the TWO WEEK time frame I was told, my hair came out in the hair brush in gobs.... UGH
I actually went back for my 2nd round of AC chemo.  I wasn't as nervous this time around. I had been through it and knew what to expect. My biggest issue was that I had gotten an upper respiratory infection on what was suposed to be my GOOD week, my OFF chemo week. So I gagged and coughed the week that was supposed to be a better time for me. Now, here I was about to get toxic again, with the bad cold hanging on. Dr.Khan gave me a Z-Pak to knock the infection out, and I was on my 2nd day of that antibiotic when it was chemo time again.   There was some discussion about whether I had a fever with this bad cold, and I did not. So, since my levels were 7.9 (white blood cells) and strong enough for chemo, and NO FEVER, chemo was given. 
My nurse was a perky lady originally form NY,  married to a Greek guy. We laughed about the Greeks when she said her mother-in-law would not come to visit her in FL because her dog was a house dog and Greek mama thought pets should be outside-- hahahahha.
The toxic liquid coursed through my veins and I was at peace. I told God he was good to me, despite what I had to go through. I thought about my boys, and living longer and what it would mean to them to have me around a bit into their adult years. I hope they appreciate it! LOL

After infusion was over, I mosied down to the hair salon. I was trying on all the wigs and having a good time being blonde, red, and everything in between!  I ordered a Gabor wig, bought some kercheifs, hats, and the like, to get me through my what was soon to be-- "bald and beautiful" period.  Ben got a kick out of the whole thing and cracked jokes with the salon lady the entire time. MEN.

My first two days after chemo were ok-- Because of my new nausea meds, Ammend, I did not feel nauseus, and was praising God for that.  And the debilitating headache was not there either, I was getting spoiled-- thinking I would NOT have a single side effect!  Saturday morning Paul and I had planned to attend a training and I got up even though I felt like I had the Flu. I lasted the whole 3 hours but Saturday night, my good time was up.
This hot, burning sensation started in my back and chest up to my head. My skin could not be touched.
The body aches started and I just laid in bed all night trying to figure out why this was all happening.
I was foggy, sickly, and not able to function. I had my back-up helpers there to take care of Ari and the boys seemed to be doing ok.  A party pulled into the barn at 3pm, and I was glad someone would be enjoying the farm for their birthday!
I wish I could say it got better as the night wore into Sunday, and as Sunday now has turned into Monday.
I have a pain in my gut, that feels like I've been kicked, it actually makes me cough on reflex. My head aches and my body feels like a truck has run it over several times. I am praying, meditating and wondering if I can do this ever again. I just don't know if I can. Right now I don't want to.  I am passing the painful hours
on my computer, looking for a great deal to take the boys away the week of Feb. 15th. (their week off of school) and working on my shopping portal contacts.  Something to keep me busy, working....  laundry piles up, and dishes are left undone-- you can tell it's a house full of boys...
And yet, I have so much to be thankful for--- my boys, my home.... my family, my friends.....

oh, wowwww    hair is just falling out in clumps---  when is that wig due in? Salon is going to call...

MY HOPE IS IN YOU LORD--
TOGETHER WE CAN OVERCOME--

 XXX0000
MAROU

Chemo Shmemo! is that all you got?

CHEMO SCHMEMO!   The light at the end of the tunnel has hit and I am very grateful. The last few days have been soo much better-- I started singing and dancing around the house! Karaoke!
God is faithful to us.
Thursday my Uncle Lee and Kim came up from port Charlotte to visit and we had a big fat Greek family party!  He had never been to my new home, and it's been 3 1/2 years since I built it!  He brought my Dad's  famous Dandy Day chicken fluffs and massive pizzas from his deli. He indulged us with his creamy cheese cake and it brought back memories of the diners in NJ.
Mom and my sisters came over and their other halves + kids. Mom was feeling fine, a wonderful miracle since she had Chemo Wed. We laughed and enjoyed little baby Aiden!  Linda's new grandson from Marty and Marci.

It's Saturday night and Mom has some fatigue, but otherwise is doing fine. (I made that deal remember?)
I told her my bedtime has changed, so should hers! Who cares??? Listen to your body.. I started to!
I am battling a bit of a cold type symptom last two nights. ONLY at night? Wierd.
I pray it's not anything big that I caught. I cough, and nose issues. NO fever. Anything over 100.5
I'd have to call.

The weather is so very cold for this part of the country-- a whole week of freezing temps at night!
I only ventured out today for an hour-- I can't take it! I froze. We Covered all the plants and have our tortoises wandering around the house, again!   This is Bubba- the largest one. He's got to be 80 lbs. now and is about 18 years old! African Spur Thigh tortoise.

We trip on him daily!

So despite some body aches and this little cold thing-- I have hope that I may suffer the first four days or so after chemo-- but can move on and have a good week after that. :)

My next treatment is Wed Jan 13th, providing my blood work on Tuesday is acceptable and my count isn't too low. (white blood cell count)  "c'mon little boogars, multiply!"
Mom's is Wed. the 20th. (same conditions)

Friends and Farmily: PLEASE TAKE CARE OF YOURSELVES--GET YOUR CHECK UPS AND DO PREVENTATIVE MEASURES AGAINST CANCER. THERE'S LOTS YOU CAN DO--it's better than chemo!
Love you so much! M.

Four days since Chemo invasion

Day ONE and Night ONE was simply wretched nausea and aches and pains.
NO Sleep of course. Flushed face. UGH
Day Two- Neulasta shot. Night two- no sleep-  horrific unending headache.
Called the doctor Friday night--- was up all night with sharp shooting pains all over my body.

Hot flushes, and.... pounding headache. Asked doc about headache. Said it's possible from chemo

but not the usual side effect.  HUH?  Glad to be UNUSUAL!  He told me to take 600mg. tylenol, or oxycodone (which made me vomit) for the headache. And... If I slur my speech to get to the hospital!

Great, thanks!  WELL-- body is feeling like a truck ran it over.

Friday to Saturday night have been mixed with pain, sharp shooting in my joints and bones all over, no notice, no stopping, intermittently shooting. Legs shaking at night from it.
I read that the joint and bone pains are supposed to be a side effect of the Neulasta shot. And not happen for one week after shot.
I"m either early with that, or these are chemo pains! And Neulast bone pain to come! UGH!
My new daughter in law Nicole helps me with laundry and dishes--every task is tiresome and painful.

My dear friend Beth came by Sat. afternoon with ginger carrot soup from the health food store, and herb salad. What a great lunch! A barn party went on at the barn Saturday too. I watched, peering at the window at the people gathered hundreds of feet away to celebrate. "Did they know a woman was in the house battling chemo, writhing in pain? Did it matter? NO and NO. Their little girl had the time of  her life in 55 degree weather at my barn for her birthday. And that's good. They yelled during the hayride and I could hear the laughter......it echoed through my water filled swamp...

NIghts are the worse: Thank God for Adivan. Or I would not sleep at all! I awake every night, every two hours-- and pray  "From where does my help come. My help comes from the Lord. "  
When I think I can't go on-- I just do.

Today is day four- it's Sunday. My kids are trying to be helpful. They're adorable and annoying still at times lol.

My friends in the travel biz text me and ask if they can come up and bring quesedillas. That sounds delish! They arrive and make the cheese and chicken filled qeusas and we laugh. They make sure I don't lift a finger and make me rest in my loveseat all wrapped up.
When the gate sticks open and the goats threaten to leave the property, Brenda, Lauren, Charlotte and Dave get on their coats and follow my son Jamie out to the barn to put the animals up, and hay them.
They gather the eggs and have their taste of farm life. And it was 45 degrees out!  brrrrrr....
All too soon they take their leave.
Tonight I am achy.... like a CAR ran me over.... and the headache persists. Tomorrow I call... i need relief.

In waltzes sister Linda and my Mom!  Chicken and salad and my coveted stone ground wheat crackers I need!  We visit for a bit and eat dinner. The boys are still stuffed from the quesas though.

I look at my Mom... I don't want her to do this too--- tomorrow she gets her port, wed. chemo.

I tell her, "Mom, it's achy, it's painful, but we can do this."  IF I COULD DOUBLE MY PAIN, AND GET HER OUT OF HAVING TO DO IT I WOULD. IS THERE SOME BARGAIN I CAN MAKE LIKE THEY DO IN THE MOVIES? WHERE IS THAT MAN THAT APPEARS AND MAKES A DEAL?