Starting Chemo, November 2013 Group

Good morning!

Lisacm, I did AC dose dense, and Lisa137 and Smrlvr have given fabulous advice!  I could think of only three things to add.  First, I've been using Sensodyne toothpaste since my treatment started.  I've had canker sores my whole life and was certain I would have a mouth full of them with treatment.  Through some twist of fate, I haven't had a single mouth sore since last summer...maybe the toothpaste is helping?  Also, I would recommend doing any kind of exercise you feel up to doing, even if it's walking to the mailbox and back.  I'm a firm believer that it helps your body heal, and it does wonders for mental health as well.  Last, and this is as much advice for myself as for you, remember that however you feel at any particular moment with SEs is probably not how you're going to feel tomorrow or the next day.  Just because you feel crappy on day 3 of cycle 1 doesn't mean you'll feel the same crappy on day 3 of cycle 2.  Sure, it could be worse, but it might be better.  I tend to get really worked up when I'm nonfunctional that I might not be able to get up off the couch for weeks, then what will I do, how will the kids get to school, how can I take this, etc.  Then the side effect gods mix things up.  Case in point:  This past Monday I woke up and felt weak, dehydrated (even though I drink water like a fish), dizzy, a little nauseated, and generally different like something was going really wrong.  As soon as everyone left for work and school, I was crying and scared since I hadn't felt like this before.  I took an Ativan and slept on and off through HGTV the rest of the morning into the early afternoon.  At around 3 pm, I could tell whatever that was had passed through me and was gone.  I literally got up, dressed and started making dinner like nothing had happened.  It's a different take on "being in the moment," but you get the idea.  You can do this, and rely on all of us when you need anything.  And embrace Ativan.

Re transfusions, my mom gets them from time to time for anemia, and she feels wonderful afterward.

Paulette and Audra, woo hoo for you both!

Yesterday my mom came to help me reorganize my closet.  It had started to become a dumping ground for too many things that shouldn't be in my closet, and my mom is really good with stuff like that.  Anyway, by the end of the day I was so exhausted I was practically catatonic!  It wasn't a particularly physically challenging project, but I guess being mentally engaged in something for 5+ hours is something I haven't been in a long time, and I was pooped.  I really want to go back to work a couple weeks after radiation ends in April, so I hope that is doable.  

One for the insult-to-injury file:  I've been getting little itty bitty white heads all over my face for a few weeks.  They're almost unnoticeable, so I haven't let them get to me too much.  Yesterday, however, I developed a HUGE one on the lower rim of my eye (a stye?).  Fancy name or not, it's hideous and I can't pop it.  This morning it looks like it had little babies all around it, and the two eyelashes I have left don't really provide any camouflage.  Really.

Hello Everyone!

Well I am finally able to get to the computer and perhaps do some catching up on yall and do my bio to share with yall!

I am a petite 4'11' 52 year old mother of two WONDERFUL children! My RN hubby has been at my side for 24 years, which 23

have been united in marriage.

We have lived in our home in Ocala FLorida for almost 23 years and have enjoyed spot of land the Lord has blessed us with!

We have approx 1 1/4 acres with LOTS of trees and a multitude of plants of all types! When most people think of Florida

they think of beaches and palm trees or the insanity of the theme parks! Our world here is so much different. We are

located between Orlando and Gainesville in what is known as the Horse Captital of the World! Unlike much of Florida we

have rolling hills, Massive Oak and Magnolia trees, a plethera of animals and unending green pastures containing the most

beautiful ranches filled with galloping horses!In the spring we have baby horses almost everywhere you look along with

blooming azalas! Our weather here is unlike the remainder of the state because we are just about what is known as the

frost line. The gives us a little less humidity (at times) and "almost" 4 seasons. Though our longest season is summer

with temps running generally 90-100 +/-, we still do get the changes in the trees during the fall and blooms in the

spring. Our winters can be surprisingly chilly here with temps dropping into the single and double digits. Thanks to those

times you Northerners take a deep breath and blow your cold air down upon us! This "cold" season generally lasts from

November and begins to warm up in late January and February. We still get those times during the winter where you would

think it is time for the beach!

We have abundant springs, rivers and lakes in our area! The aquafir which runs under this part of Florida brings fantastic

drinking water to our home and has spoiled me forever! Silver Springs is located a few miles away and is the location

where they filmed alot of the Tarzan movies years ago. My husband and son are avid scuba divers and much to my dismay

spend time diving down inside the bowels of the earth weaving and winding through the massive caverns cut into the ground

by the underwater springs! As you might imagine, when they decide to do such dangerous events I am always on edge until

they emerge from the ground! There are also above ground caverns which my son explores as a spladunker!

I was born in Alexandria Va at Ft. Belviour on November 23, 1961 and have the mighty lable as a Turkey Baby! Since my

arrival into the world we lived in Baltimore as a toddler, West Falls NY during my preschool years,  and began elememtery

school in Orchard Park NY. We moved to Orlando when I was in the 5th grade and graduated from High School.

I married first at the age of 18 and had my beautiful daughter at 21. I used to be a totally shy person with no self

confidence and didn't make the best choice for marriage at such a young age. I cannot complain because the most fantastic

blessing that arrived was my BEAUTIFUL DAUGHTER Nicole!

Nicole is now 30 years old and has 3 fantastic children of her own. She is a stay home mom which her hubby providing for

them through the USAF. Until a few days ago they were stationed at Edwards Air Force Base in California. For those who are

unfamiliar with this base...it is the base where the space shuttle would land if it was unable to land here in Florida! It

is also in the MIDDLE of the Mohave desert and at least 45 minutes from ANYTHING! I knicknamed it MARS because it is such

a desolate base! They were emprisioned there for 7 years and PRAISE GOD this week FINALLY moved! They now are located in

Rapid City, SD at the foot of the Black Hills! They purchased a home and moved in on Tuesday! After being stuck on such a

remote base for years it is a breath of fresh air for them!

My Grandbuddies are Kadin 13 years old and is my kind and sensitive side-kick! He is in the 7th grade. Colin is 11 years

old and is my rough and tumble jokster! Alana 7 yrs old is my clone! I call her my bling-bling girl because like me she

LOVES everything girlie and glittery! They are all very loving and close to one another! I miss so much not being able to

see them more often!

For those who have daughters in their teens, give or take and have had to deal with opposition...I had my share with

Nicole. Since her  biological father and I split when she was around 2 years old she always had a void. This was despite

my husband raising her as his own...she still "needed" to know on her own why her natural father always rejected her. I

always promoted a good relationship but he did not pursue one with her and instead focused on his wives and their

children. When she was 15 she went on a weekend visit which ended up lasting 7 months. She just did not come home and

didnt call. He natural Father had no clue how to raise her and allowed he to do whatever she wanted. This took her down

some dark trails where I had no control or knowledge of. One late night I got a call...come and pick up your daughter.

This was a very difficult time during her teens for us both. Thankfully, we grew through it and she was able to begin to

make correct choices over time. Unfortunately it was not until an untimely pregnancy and she became a teen mom.

She married the babies father and they are still happily together 14 years later! Her natural father reconcilied with her

after marrying his 6th wife who promoted their relationship! Now they are as close as I always hoped! We are also best

friends and talk many times a day! THank GOd for cell phones!!!! It is a delight having a daughter so close! I never would

have believed it looking back at her teens!

My RN Hubby and I had a 23 year old son together named Anthony. He is also married now and is a very busy dude! His

beautiful wife Kim live in Jacksonville, FL. They purchased a home this past year. They both are attending college, work

and he is also in the Florida Army National Guard. He spent some time in Bagdad a few years ago but had to return due to

injury to his hip. He plans on continuing his career in the military and is pursuing a veternarian degree.

They have a plethera of animals in their home from cats to cobras! His LOVE is the slithery things! NOT MINE!! When

someone needs help to wrangle one of those hissie things they call him! He is fully trained and licesened..but still..ick!

His wife is trained in animals as well and they both work with many exotic creatures! No grandbabies yet on their

end...but they are still rather young and much on their agenda to deal with littens yet! They do want a house full though!

It seems we all have many of the same hobbies! I love to do most everything! Art, Photography, writing,

scrapbooking,gardening, travel.....and the list goes on. Unfortunately...due to health restraints I have not been able to

pursue much in recent years. I have had autoimmune problems since around 9-10 years old and each time I have a flair it

causes more problems. I won't go into the mega list of problems, since it would bore the pants off you! And not like we

don't talk enough about our problems already!! lol!

I had been a beautician then transitioned into an apprentice optician in my early 20's. This led to a career as a Licensed

Managing Optician. I ran a few of these "super opticials" until my health cut my career short and I had to go on

disability. I miss so much working! I LOVED my job and patients and was very good at it!

 Despite not being able to work an

outside job anymore I am still an ordained minister and spend time as I can pursing that direction! I was blessed to be

able to go on a missionary trip a number of years ago to the Phillippines and that was FANTASTIC!! I enjoy helping people

when I can and delight in speaking life into others to help them overcome difficulties!

Dealing with cancer just builds my testimony and gives me yet another opporutunity to understand what others are enduring!

I have learned that the situations in our lives we endure and overcome gives us a unique perspective to assist others!

That is why it is important to not get stuck in the rut of "why me" or becoming engrossed in our past or future

possibilities!

I have enjoyed learning who you ladies are and commend you for pressing on! You are always in my prayers!
T're!!!

I am soooooooo  far behind....Oh my.......sorry!

(((Paulette)))-love the biography...so interesting to read.  Didn't know you had so many different sides.  No wonder you are so full of life!  I am boring compared to you-lololol!

Happy you are feeling better!

No idea what my doc has planned for me, but if he says no scans I'm gonna be like "OKAY!" 

Yeah it's kind of scary, but not as scary as waiting for scan results....and think about it: You get one scan and that's clean and you relax and then six months later you have some random pain and think "Ohmigod"..... and start wondering if you should have another scan. When does it end? I totally understand the logic behind waiting to look for things until there is a reason to think there might be something to look for, and that's exactly what I want to do.

I see the whole cancer thing like walking down a dark, scary street, alone, with the odd feeling that someone is following you and is up to no good. You can constantly turn and look over your shoulder and quake over every little shadow and sound, or you can pick up your pace, walk steadily, and get the hell out of there. That's what I want to do. Get the hell out of there and put it all behind me. And KEEP it behind me for as long as I possibly can--hopefully forever.

That said, I have to admit that today I've been looking over my shoulder a lot.    I wish I wouldn't do that; it doesn't help anything. I felt really good for the first part of the day and then suddenly this afternoon got that surreal "oh my God this happened to me!" thing, and haven't really recovered.

Funny part is, I know why.  I'm having a silent period, lol. I realized tonight that I *should* be on my period. Last month I had a very light flow for about 5 days. Now apparently I'm just having the side effects:

#1. Couldn't get to sleep last night, and kind of wired today.

#2. Weepy, depressed.

#3. I can't cook! It's been a running joke for years--because it's TRUE---that I *cannot* cook when I'm on my period. Tonight I was trying to make a simple box of plain old kraft macaroni and cheese. First thing I did was open the box on the wrong end. Then I dumped pasta, cheese package, and all, into the boiling water and hubby had to fish the packet out for me. Then, once I'd drained the (overcooked) pasta, I dumped the powdered cheese in *first* instead of waiting til I'd added some extra cheese and some butter to melt. Completely bass ackwards from how I usually do it. 

That's when it hit me: OMG I'm on my period. lol. Hopefully tonight I can get some decent and restful sleep and wake up ready for a good weekend, and instead of being weepy because of the period-that-isn't, be grateful instead that I'm not cramping and utterly miserable like my periods would usually make me. Geez, I hope they are gone for good!

Paulette: You're a fascinating person. Even moreso now. Loved the bio.

Yeah, I think everyone has to find a balance between vigilance and moving on that they themselves are comfortable with, and that balance will be drastically different from woman to woman.

I *wish* we could actually do that without the insurance companies saying yay or nay. It should be our choice, in my opinion.

I think my own attitude is partly because I'm ILC which is much harder to detect early in any case, and partly because my my diagnostic process was so horrible for me that I chose to have the BMX (right choice, as it turned out,) just so I'd never have to have THAT done again, and if I CAN get a complete hysterectomy (insurance will have to decide,) I'm going to.

Smrlvr, my glucose was elevated when I saw my MO yesterday. She said since it wasn't a fasting test, it was ok if it was below 200, not to worry, and yes, the chemo elevates your blood sugar.. She basically said let it all get sorted out when I finish active treatment. Hope that helps.

Audra:  I had my last chemo treatment on 1/8/14 and the RN asked if I was scheduled for a PET Scan and I replied, "No one told me".  I follow up with my medical oncologist on 2/5/2014, so I'll ask and see what he says.  Good luck to you.

Hey ladies,

With respect to glucose, here it is an 'extra' blood test, outside the normal Blood work. When I first started Chemo, one of the nurses noticed the Oncologist had ordered it too, which I guess is not normal. She asked me if I was a diabetic, I said no, but it does run in the family. She said 'oh, thats why, Chemo can push you into it'. Hope that helps.

Must be a day for loosing it. Maybe a full moon? Anywho, I don't know if I'm crazy but Im getting annoyed with people thinking Im on a vacation and will come back with new boobs in a few months and all will be as normal. I realize you don't get this hell until you have lived it, but If I have one more person ask me what Im going with all my free time I'm going to, well, I'm not sure what I'm going to do.... But today my pissedoffness led me to buying a new purse (ok thats really not that bad, and it is a rather nice red purse too, but retail therapy can be scarry, it could have been a car....)

Lisa, I agree that it should be our choice. I too went through a bit of hell when diagnosed so I now have no confidence in 'technology'. Three Mammo's in one year, and two biopsies on my right breast (which has several lumps), and I was told don't worry about it. I insisded on an MRI, and guess what - a 5cm plus lump with mixed ILC and IDC and a  2cm lump in my armpit, and extensive DCIS (quarter of the breast) (apparently I have dense breast tissue - Mammo showed nothing). After surgery I asked for a second opinion and more nodes to be checked as they are suspose to get enough to diagnose 3A to C. Now the verdict is the lump in my breast was IDC 2 plus cm incased in a fibroid. (Apparently not common) and a few more nodes tested positive, and something called extracapular invasion. Anyway the message I got was the surgeon probably didnt take enough of my nodes - so who really knows what I am. Anyway -  I feel like I'm am probably full cancer cells, whether or not they will land somewhere and cause more havoc is yet to be determined but I am gonna keep putting up a fight - but exhausting it is. And while I am fighting, Im gonna try to not get to angry about it cause I likely have too many purses now, and I what to do some quality living.

I hope you all are having a better day!

JAB

Smrlvr- I agree with your daughter regarding your elevated blood glucose.  The steroids (Decadron) will always increase your glucose levels.  I'm taking the Decadron as well.  My sugars went from 80 to 120.  Once your finish the steroids the sugar will go back to normal.

I've done 3 treatments of Taxol and Herceptin.  I definitely feel better on the Taxol and Herceptin than AC.  I haven't had to call out sick from work and even started exercising again.

Oh Jab, that sucks. Buy another purse, maybe some shoes too?

Audra, much more nausea and much earlier than earlier treatments. Already sapped of energy.

Great to hear from you Paulette!

Hi ladies!

I have been reading your posts, but taking a break from posting. I am going to change that tonight, though.

Paulette: I enjoyed reading your bio. I even looked up Ocala pictures online. It does look like a nice place to live. It certainly made me curious enough to make me want to visit your county. So, one day I just might.

Talking about unexpected SE, last Wednesday, when my nurse came to do the PICC line care, I noticed that I developed some allergic rash around the picc incision. It must be some kind of reaction to the type of glue in the dressing. So she had to place some non woven sponges under the dressing to give it some air. In the meantime even the area around the picc got reder. I don't want to panic, but pray and hope that the picc will be fine at least untill next Tuesday when I am due for my next chemo. I took some Claritin to calm the itchiness on the skin. It does feel better now, although I do get the ocassional sharp sensation with certain movements around the incission. I hope it's going to be fine.

To keep my mind off this I tried to focus on something positive. That's why I took this picture of my blooming plant today to lift my spirits. I hope it can lift yours.

dont forget the tiniest blessings!

Okie DOkie! Im on the computer for a little bit before hubby commandeers it back~! I am trying to catch up with yall!! lol...like that's possible!

Thanks for the nice comments! I LOVE to take pics of the smallest things in life with a macro lens! It is really cool what you can see~

Amazon...it is pretty here...so much different than the remainder of Florida. Would love to have you visit sometime!!!! Everyones invited!

As far as the reaction to the adheasive on your PICC dressing...have dealt with that FOREVER~ I actually blister! Have them use what they call skin prep...made by numerous manufacturers....The trick is to MAKE SURE IT DRYS all the way before applying the bandage! Also...they have new types of dressings....One I found which seems no too bad is called IV 3000...It is much less on the SE from the adhesives and bandage materials! I have to keep dressing on DAILY with the IV fluids given at home. This seems to make the problem MUCH LESS! At least Im not blistering, itching and miserable! It took awhile to find this one. Ask for it!! Its worth a try!!

I love your pic Pat!

I have things I want to say to everyone...so it may take me a few times over the next few hours once hubby grabs the computer! He is out grocery shopping for me right now! lol!!!

I haven't been on much the past week or so because of the drop in HGB...which the transfusion helped an UNBELIEVABLE amount!!! WHY>>>WHY>>>>did I wait! Dumb...da...dum ...dumb! Also known as PTSD in my case! lol!

Also...my teeth.....OMG....now that is a whole different story which is absurd! Anywho...Last week...My gums and teeth on the left side of my mouth HURT LIKE HELL!!!!! All the way to the nerves. When I have lupus flairs they tend to do this but this was beyond ouchie! We finally figured it was just the inflammation in my gums due to our wonderful friend Chemo! After many rinses with .....lidocanine, magic mouthwash, floride w/antibacterial stuff and chlorhexidine gluconate....it FINALLY settled down! I just had to medicate myself into oblivion to even breathe! And I am normally on REALLY HIGH dose of pain meds for other issues!

Lisa....black sheep....nooooo...we've all got a "dark side".....EEEEEEEEEE.......lol......My long term hubby is actually my 3rd! But third was the charm! We have gone thru out issues over the years...but still keep on ticking!~I don't think that ANY realationship is perfect! Just in the movies....

which by the way I left alot out that I love to do....I am a movie junkie too!...love to cook...a neat freak but because of the other med issues makes me feel skitzo because I CANT do things like I want to ! I used to be a gymnast and still can bend like a pretzel! lol....Was 9 month preggo and could do a full crotch to the floor split with a MASSIVE tummy! Little did I know it was a sign of Mixed Connectiv

e tissue disease! Makes for a great athlethe! Ok....now I did something WEIRD to this new computer using the new windows program! I cant edit or see what I wrote! Everything is about the size of info on a very small Rx bottle! lol!

Hope it gave yall a laugh!

Ill try to get back to this shortly...hubby pulling up with my shopping haul!  I have NO CLUE if this duplicated yet! If so....Well.....let me try to figure this out!!!

Paulette and Pat, live the pics of the warm weather.

It's interesting that chemo can make you diabetic; he onc nurse called back later this afternoon, and was more understanding.  I asked about the decadron and she said it would elevate the glucose, but not to the level,of mine, which was over 200.  Maybe it pushed me over the edge.  I will need a fasting glucose test.

I hope yiu ladies have a nice weekend.