How can it be, Yesterday was June, today is October

No matter how hard we try, we can’t stop time, and it really seems the older we get, the faster it goes.

For me, time has been flying by in nano-blinks (new term, but seems to make sense).  Since i last wrote so much has happened in my life.

1. I had my final reconstruction surgery (I hope), removing the tissue expanders and inserting the permanent implants, have to admit, the expanders felt like rocks, as far from real as could be, the implants do feel real, or at least as real as can be expected. 🙂
2. The Herceptin isn’t toxic to the veins like the harsher chemo, so i had my port removed with the final reconstruction surgery.  The surgeon was able to remove the port from the inside, without having to re-open the incision used to insert the port, what good news 🙂
3. I am back to work full time.  Only missed a month 🙂
4. I am on just Herceptin for my chemo treatments which means side effects are much lower and fewer sick days !!!  🙂
   1. Hair is growing back
      1. It started coming in gray, then started getting dark, darker than anything I ever had, now, like my oldest daughter says, it looks like a Dalmatian.
      2. Hair is growing very slowly, started growing around first of July and now it is reaching the equivalent of the ‘terrible twos’, it truly has a mind of it’s own
      3. Doc told me that since my hair is normally very curly it would come in straight, and be straight for a year… well, it was straight for a month, now that it is long enough to wave, it is waving all over the place 😦  I was really looking forward to straight hair after spending so many years with keratin treatments.
      4. Ugh, i have to shave my legs every day again!!!  It was so nice not having to shave, if there was a way that I could possibly bottle the no hair from neck down I think i could be a bajillionaire 🙂
      5. Not wearing the wigs anymore 🙂  The blue wig was the best, you couldn’t help but feel better when you looked in the mirror and saw yourself with blue hair 🙂
   2. Fingernails are growing back, yes, you heard me right, the chemo took my fingernails too.  they didn’t fall completely off, but they receded drastically.  what was left from the nail bed was so weak and shredded they were terrible.  They haven’t grown to the end of my finger yet, but they certainly are growing.  And believe it or not I am getting ingrown fingernails, like people do on thier toes.  They really are painful but i think i am getting past them.  My fingernails split down the length of the nail, very painful.
   3. Nausea is much less frequent and my meds that i am taking are greatly reduced
   4. I still go through puberty during each chemo cycle, breaking out on my face, but it is a much smaller period.
   5. My neuropathy isn’t getting worse, but it isn’t getting better eirther.
      1. primarily on my right side, right foot and leg the most
      2. what good luck, the hot tub actually makes it feel better 🙂
      3. what bad luck, being on my feet for extended periods makes it feel worse
   6. Fatigue is very real, your get up and go, got up and left. . .
5. Mom had to get a new aortic valve and a double bypass the first part of June.  I could see her room from my chemo room, at that time my chemo was taking 8 – 9 hours, now i am in and out of there in an hour and a half.  🙂
6. We went to Alaska for my nephews wedding, what a beautiful place, we would love to go back.  We were there the longest day and went to the midnight sun baseball game.  the game is in Fairbanks and starts at 10:00 and is played without lights. 🙂  Crazy awesome having such long days in the summer, think it would be crazy bummer having so little light in the winter.
7. 8/20 I got married!!!  🙂  Married to my best friend and soul mate and couldn’t be happier!!
   1. Looking forward to honeymoon in November
8. 8/22 Alaina, my oldest is back to school at IA state
9. 8/22 Anna, my youngest shipped for Marine Boot Camp, Parris Island
   1. I cannot believe how dependent we have become on cell phones, now that Anna is off to boot camp, the only way to communicate with her for 13 weeks is via good old pen and paper!!!
   2. I have been one of those that will actually go days without looking in my mail box, now i find myself stalking my mailbox!!! waiting for the next letter and reading and re-reading those letters she has written, they are very dog eared and very loved.
   3. How bad am I, I have printed sheets of address labels so I can quickly zip off cards and letters to Anna.  I have even sent Anna some stamped and self addressed envelopes… lol, she ran out of stamps and stationary, she has been wonderful about writing to so many of us, i feel very fortunate, i know there are many parents that go weeks waiting on communication from their recruits.
   4. Looking forward to her graduation date 11/18.

So here is the question – what can I do to help those that are going through or about to go through what I have experienced and continue to experience…. I share these nuggets with you.

1. Never give up your faith, i know that my faith continues to pull me through.
   1. Good things happen to good people and bad things happen to good people.  Stuff happens, we need to keep our faith always and know that God is always with us, He will never leave us to endure alone.
2. Don’t give in to that crummy sick feeling, force yourself to get out and do things, but remember everything within moderation.
   1. think about it, if you are going to feel crummy no matter what you are doing, you might as well at least try doing something fun 🙂  Unless of course you are feeling so crummy you can’t leave the bathroom… that happens 😦
3. sometimes you just feel like crying, that’s o.k.
4. Keep working your brain, chemo brain is a real thing that affects the short term memory in a strange way, it makes you feel like you are walking through a dream
5. Take up those offers from family and friends to help out, they want to help, but you need to tell them it’s o.k.
   1. One of my favorite things during chemo is a friend that took me to lunch each Wednesday before chemo Monday’s, it really meant a lot to me and got me out when i wouldn’t have otherwise gone out.
6. Get back into your normal gradually, if you have read my previous blogs, you will know that i have had a problem with this one, get back on the horse, leave the bronc in the paddock for another day…  🙂
7. Don’t sweat the small stuff.  Seriously, if the roof leaks, the cheese got moldy or you didn’t make your bed, it isn’t the end of the world, those things are easily corrected and we move on.

I promise not to be so long before the next post.  Keep faith and know that you are never alone, God is always walking with us.  We can all beat this thing called Cancer.  My prayers are with you. 🙂  Til next time. 🙂

Foodie vs. Chemo . . .

Thank you for joining me on my journey with Breast Cancer.  I know that God has brought us together as I go through my journey, I know each of you is going through your own journey, my prayers are with all of you.

All my life, I have been a Foodie.  Everything Food, cooking, creating, eating, sharing 🙂  what can I say, I am Bohemian 🙂  It’s in my blood.

When they tell you your taste changes during chemo…  That is an understatement…  First, you seldom have an appetite because you aren’t feeling well, achy, flu-like symptoms aren’t condusive to wanting to prepare or eat food.  But then you have those days that all of a sudden, you are starving for one of your favorite foods and can’t wait to have it.  For me, I was seriously craving a smoked turkey and bacon sandwhich on garlic foccacia from South Union Bread cafe.  This place is only open for lunch and only on Monday – Friday.  On the day of the ‘craving’, I had a total of 27 minutes between meetings to get downtown to pick up a sandwhich.  This is how it went down –

• Meeting ends,
• Jump in the car
• Drive downtown (4 minutes)
• get to restaurant
• Doors are locked, patrons inside
• knock on windows
• server opens door and i ask if i can get a sandwhich to go
• server checks if ovens are still on
• score, ovens are still on and i am going to get my sandwhich 🙂
• Order sandwhich,
• Drive back home
• on time for next meeting.

The entire time I am driving home and dialing into my meeting, I am smelling the sandwhich and can’t wait to bite into it.   Ashamed to admit,  my jowls are watering,  just the thought of ‘the sandwhich’.  Then it happens, finally a break in the call where I can mute my phone and dive into my coveted sandwhich.  I take the first bite, expecting all the flavors that match smells.  Bite, chew, chew, chew,…  Where are the flavors… Not in first bite.  Second bite, chew, chew, chew,…  Ugh, still none of the  flavors I am looking for, just the opposite 😦 try a couple more bites and give up on sandwhich 😦

This is one of the biggest downfalls of chemo for me.  I love to cook, bake, eat and entertain.   But when everything you make tastes bad, you are hesitant to give it to anyone 😦

Eating and Chemo in general, is not a good combination.  Either you don’t feel well enough to want to eat and are working just to get protein and calories or… you finally feel well enough to want to eat and nothing is tasting the way you expect it to :-(.  The Chemo cycle is one of losing weight (I tend to lose 5 pounds in the first week), working to gain the weight back before the next chemo.  Last chemo, I hit my previous chemo weight the day before I went back to chemo.

I have three weeks between my chemo sessions.  The first week is the bad, the second week better, the third week the best, i am just staring week three and it is when I start really feeling human again.  I will have four more chemo sessions with the really bad drugs and side effects (as long as my blood counts stay where they need to be, i will be done with those in May).  After the four, I will continue the rest of the year with a single drug that does NOT cause hair loss, which means my hair will start coming back 🙂  Yippee!!!! Hair is a really good thing to have on your head, especially if you are female, however, there are a few benefits 🙂  Yep, here we go with the silver linging –

1. Save $$$’s on shampoo and conditioner
2. Don’t have to spend time drying hair
3. For me, don’t have to spend time flattening hair 🙂
4. Haven’t had to shave my legs for a month and they are baby bottom smooth 🙂
5. Shower time is wicked fast when you aren’t shaving hards of flesh, shampooing and conditioning 🙂

Signing off for today, wishing you all a wonderfully blessed journey in all that you do.  May God always give you comfort, until next time.  Happy Trails 🙂

Hair Today, Gone Tomorrow

On Super Bowl Sunday, for an early pre-game activity, Gerry shaved my head down to a quarter inch.  Everything I had heard about my chemo and hair loss, told me that when my hair started to come out, it would be coming out by the fist full, that there would be huge clumps on my pillow, in my hairbrush, etc. I didn’t want to be in that place.  A week later, my hair hadn’t started to fall out, Gerry and I both had a dream that I went all the way through chemo without loosing any hair. . .  Nice thought but no cigar. . .  Feb. 6 we shaved my head, Feb. 17 my hair started to hurt, for anyone that has had long hair in a pony tail all day, you know the feeling at night when you take the pony tail out and your hair hurts at the routes because it has been bent the wrong way all day.  Well, that is exactly how it felt all over my head, I though it was just from wearing my wig.  The hair pain stayed for four days, and then on Sunday Feb. 21 it happened, my hair started to come out worse then a heavily shedding dog.  Hair on my head and my eyebrows is coming out, making me look like a spotted Dalmatian.  It is turning into wig, scarf, cap time for sure :-).

My second Chemo is complete.  My first chemo was 8 hours, second 5 hours, going forward my chemo should only be 4.5 hours for the next four chemo sessions and then finishing out the year with 2 hour sessions, much more manageable.

I am not nearly as apprehensive about the next few weeks post chemo like I was last time.  I have a much better idea of what to expect, what I need to take when and how long it will all last.  What to take for bone pain, what to take for nausea, when to take them, etc.  And most of all, I know there is a light at the end of the tunnel.  A huge thank you to friends and family for all of your support and a giant thank you to Lorinda and Glenace for getting my girl cave going!!! I have already used it several times, note the pictures below, I cut a XXL t-shirt down into a dress for the baconfest, couldn’t have done it without you!!!

Last week I had another fill in my expanders.  I only have one fill left and then we will need to wait until after the long chemos to put in the permanent implants, hopefully all will go well, and they will be in this summer before our wedding. 🙂  Yep, we decided to make it official and get married late summer, we are looking forward to the happy day.

Baconfest was a success, I made it through in flying colors, it was two days before my chemo so I was feeling very well.

As we go through life, we never know what is around the next corner, the only thing we do know is that God will always be there with us and will always give us what we need to make it through the challenges life offer us.  Keep God in your heart, keep your family and friends close and let people know when you need help, it’s o.k. to now always be the strong one.

Thank you all for your continued support, I believe that God has brought us all together so that we can help each other on our journeys through life.  Special prayers out to my friend Sally, she is having a really tough time right now as God is helping her son and nephew during their healing process.

Until next time, may God Bless all of you,

xoxoxo

Linda

 

Time for a fill – :-)

Today’s blog will cover the Tissue Expander and what happens during breast reconstruction using the Tissue Expander.  However, before I get started on our topic for the day, I would like to share my amazement with you regarding social media.

I graduated from high school in 1975, at that time, we didn’t have a computer in our school.  I took typing and it was a really big deal that our school had electric typewriters (I lived in a town approximately 25k).  We loved it when we got to use the mimeograph machine for personal use, and HATED typing with carbon papers.

My stepchildren initially got me into Facebook years ago to keep up with their activities (they live miles away).  Subsequently I have become a ‘hip old mom’, my daughters are 17 & 20 and we are on Twitter, Instagram, Facebook and they are trying to teach me SnapChat (I am a better receiver than sender… lol).  So seriously, where am I going with all of this?  I started this blog 11 days ago and I am literally amazed that I have gone international!!!  I have readers in US, Mexico, Switzerland, Philippines, Australia, Norway and Canada!!  Social media really has come a very long way in providing each of us the ability to reach out and touch someone’s life that we would otherwise not be able to reach.  I pray that each of your lives that I touch I am able to leave you with the warmth of the Lord and the ability to either help cope with your own journey or those journey’s of friends and family.

Thank you all for your amazing support, I appreciate all of your continued thoughts and prayers and please know that I am sending thoughts and prayers out to each of you daily, wherever you are in our world, whatever your journey.  We are all in God’s hands, and all in God’s plans.  May God bless you today and always.

Now, onto our blog for the day 🙂

The Tissue Expander is placed between the ribs and the pectoral muscle, it is gradually expanded by injecting saline solution.  During the expansion phase, a pocket is being created that will ultimately be the home for the permanent implant.

So, what does this mean –

• During the expansion
  • Breasts are hard as rock (seriously, you could hurt someone, especially if you hug a pregnant friend with sore breasts… sorry Joanne!)
  • After each fill, as the pectoral muscle is stretching it is definitely sore, but tolerable.
  • No need for a bra, those hard rocks are held in place and absolutely NOT moving, not even when running 🙂  HUGE Plus!!!!
  • Expansion will go a little farther that the ultimate desired size, this is to build a pocket that is large enough and soft enough to allow the implant to feel more real.
  • Question I have to ask the Dr.  If I get to working out again post chemo and am really working on the pecs, could I create a negative impact on my implant?
• Post expansion
  • Surgery to remove the expanders and insert the implants.
  • Because the implant is under the pec muscle, the implant will be held securely in place, consider my pec muscle as my support bra, pretty cool 🙂
  • Periodic follow ups.
  • Tattoo nipple on left breast, right breast was able to preserve nipple.  (never say never, haha, always said I would NEVER have a tattoo… who knew… God did of course 🙂 , another lesson in humility)

The Fill

• The Tissue Expander has a special port on it for the Dr to inject the saline, similar concept to the chemo port.  The nurse finds the port using a special apparatus that has a magnet hanging from a pendulum and marks the spot.

• The Dr. comes in with the syringes and injects saline into the expanders.

• Syringe is removed, small bandage applied and you are on your way until your next fill.
• I only have two or three fills left to go and will be filling every two weeks, we are taking it slow since I won’t be able to have my expanders removed and implants put in place until at least June (based on when the first 6 cycles of chemo wrap up).

A huge thank you to all for your continued support and encouragement.  I know that God has brought each of you into my life and pray that you have strength in all of your journeys.  God Bless all of you, until next time 🙂

 

Words from a first time Chemo recipient

I walked into the whole cancer world very ignorant….  I thought cancer was cancer and chemo was chemo.  Seriously, I could have never been more wrong…  that is like saying that a car is a car and we definitely know that isn’t true, no one on this earth would compare a Bentley to a Prius – no offense intended.

Well, just as there are many different models, manufactures and options on cars, there are just as many different types of cancers and subsequent treatments.

Like I told you in an earlier post, my cancer is HER2 positive, because of the aggressive nature, i will be taking chemo for a year, however, after the first 6 cycles i only need to take the drug that is specifically targetted at HER2.  Good news, Immune system won’t be compromised !!!!  Yeah!!!  Hair will start to grow back, Yippee!!!

Let’s talk about hair… I learned today that typically hair will grow back opposite of what it was, i.e. straight goes curly, curly goes straight! That is great news for me, huge timesaver in the hair straightening department and I also learned that it could come in dark… 🙂 no gray 🙂 i am totally good with that, now the bad news (again, ugh) everything typically goes back to the way it was originally in about a year after chemo 😦  Notice typically all over this paragraph, that is because there aren’t really any knowns.

My first experience with Chemo –

I was blessed that Alaina was home from school over the weekend and didn’t have any classes back at IA State until 1:00, she was able to take me to my first chemo, she even went down to the starbucks kiosk for me and brought back not only coffee, but treats 🙂 especially liked the hummus and pretzels.  Gerry was able to stop by between cases and spend the end of the day with me and Deb (who was intrumental in getting Gerry and I together in 2014), stopped by and brought some great reading materials.  Thanks to all of you for helping me through my first chemo 🙂

• Arrived at 8:30 for blood work
  • Prior to surgery I had been told that regardless of how the surgery came out, I would need to have chemo for a year because of the HER2 positive.  I elected to have a chemo port put in during my mastectomy.  The Chemo port is on my right chest.  The dark over the incision is still the skin glue, it will look better when the glue is off.

• • When I was called in for blood work I was a little nervous, this would be the first time using my port…
  • First question, do you have the card that came with your port – me – deer in the headlights
  • Second question, do you know if you are saline or heparin flush – me – deer in the headlights
  • I made a quick call to the surgeon’s office and found out that it is saline flush, whew, who knew???
  • The nurse has a special needle that goes into the port –
    • Deep Breath
    • Punch – and yes, punch is the right word, as the needle punches into the port, it has a metal back, so you don’t need to worry about it punching through the port… lol

• A syringe of saline is injected into the port
• Two vials of blood are then pulled from the port
  • First is thrown away, as it will have too much saline
  • Second is used to evaluate the blood prior to chemo

• 9:00 – visit dr.
  • vitals
  • review blood results
  • Q&A
• 9:30 – chemo starts
  • Since I was going to be receiving chemo all day I elected to be in a private room (as you can see it became my office) vs. one of the chairs in the main room

• The first time you receive chemo (or at least my first time), they have slow drips and observation periods, my next chemo sessions will be cut by 3 hours 🙂

• 5:15 – chemo ends

So, what were the main ingrediants to my chemo and their possible side effects –

• We started with Steroids and Benydril to help my body adjust to the Chemo and then sequentially went through each of the following
• Perjeta
  • Common Side Effects
    • Hair Loss
    • Diarrhea
    • Decreased white blood cells
    • Numbness and tingling in hands and feet
    • Rash
    • Fatigue
    • Nausea
    • Decreased appetite
• Herceptin
  • Common Side Effects
    • Fevers/Chills
    • Pain at site of disease
    • Nausea
    • Shortness of breath
    • Headache
    • Dizziness
• Taxotere
  • Common Side Effects
    • Decreased red and white blood cells
    • Hair Loss
• Carboplatin
  • Common Side Effects
    • Decreased white blood cell and platelet counts
    • Hair Loss
    • Fatigue
    • Nausea and Vomiting

22 – 24 hours after chemotherapy

• Neulasta – this is a shot to promote white blood cell development
  • Common Side Effects
    • Bone Pain
    • Nausea
    • Fatigue
    • Weakness
    • Fever

I had several medical staff and fellow cancer pals tell me that no matter what, stay on top of the anti-nausea medication.  I have found that to be very true, a couple times I have run over on time and almost lost my cookies.  It is easy to forget, when you are feeling fine, it makes you think maybe you don’t need to take it after all… WRONG!!! listen to those who have already tread that trail…  they are speaking from experience.  I am now setting the alarm on my phone to remind me when it is time to take the next tablet, better safe than sorry.

Will be signing off for now, thank you all for your support, I know that God has brought you into my life and I will always be eternally grateful for each of you.  May God’s Love go with each of you throughout your days and stand by you through all your journeys.

Til next time!

Cancer is a 4 letter word . . .

Good news / Bad news

Good News, my General Surgeon gave me a free pass, follow up scheduled in 6 months… the bad news, my Oncologist took that opportunity to schedule Chemo…  I start on Monday.

I will be on an every three week cycle

• First 6 cycles –
  • TCH (docetaxel/carboplatin/trastuzumab) + pertuzumab (if they can get insurance authorization)
• For the remainder of the year –
  • trastuzumab (and hopefully pertuzumab if insurance will approve it)

The Oncologist gave me the three golden rules as my immune system is degraded by chemo.

1. Don’t ever touch my face
2. Don’t ever touch my face
3. Breath through my nose (hope I don’t get a cold, I could suffocate… LOL)

Of course there are other nuggets

1. Don’t go to public places during peak hours (avoid crowds)
2. Wash hands frequently
3. If flying, get up and walk around
4. Consider wearing a face mask in public transportation… (does that include elevators?? “hold the door, I need to put on my face mask”  LOL)

What do i have to look forward to for first chemo –

• Start at 8:30 with blood work
• Meet with Dr.
• Start Chemo at 9:30
  • the first time starting chemo each of the medications will be introduced separately.  This is to watch for any allergic reactions.
  • First chemo is anticipated 7 hours
  • Subsequent chemo under 2 hours
• I will start losing my hair shortly after the first chemo with most of it leaving me before my second chemo.
  • I ‘think’ I am planning to have a head shaving party on Super Bowl Sunday, it will be 7 days after my chemo.  I don’t want to get to the point where I look down at my pillow in the morning and see piles of my hair… or look at my brush and see more hair in my brush than in my head… I do want to keep my hair 🙂  in a Ziploc bag, maybe I could have a wig of my own hair 🙂  Maybe my hair will grow back straight??  Maybe it will grow back a different color… Maybe I could research hydrangea color management and see if I can consume different minerals affect my hair coloration.  🙂  My dear friend Sally told me she went to a new salon and they had a ton of wigs, she found some blue ones and got one for each of us, she said she put it on and it was literally so funny she laughed all night.  Mine is so when I feel blue, I can put it on, look in the mirror and laugh and go on with my life. 🙂  THANK YOU SALLY!!!!

A month after the first 6 cycles I will be able to remove my expanders, put in the permanent implants and remove my chemo port.  Yeah!!!  I am already counting the days 🙂  I just found out that the permanent implants, for whatever reason, never maintain the same temperature as your body, which means they always feel cool… Not sure how I feel about having ‘cool perky boobs’, will have to wear an extra sweater.. LOL.  As I am writing this, my mind is wandering… when I wear my pearls, they absorb your body temperature and are warm to the touch.. why can’t they do the same thing with implants?  This will be a good invention for someone 🙂

The drugs that I will be taking have numerous side effects, the degree of each varies by individual. The amount of the drug they give you is based on your body weight, I am going to try to lose some weight  and talk them into taking out the weight for my ‘girls’ since they are expander and saline and shouldn’t be included in my body weight… 🙂 Wish me luck… lol

All I know, is that I NEVER want to hear about cancer again, I am planning to kick this!!!  And I am confident that with the Holy Spirit inside me I can do just that :-).

I want to take a moment to tell you about church last Sunday.  I have always believed in God, I have always had blind faith, but Sunday was the first time that I actually felt the Lord completely envelop my body. I was overcome with love, faith and emotion, absolutely convinced that I would never be on my journey alone.  It chokes me up, just writing about it, God truly is amazing, and He is with us always.  The really crazy thing, it wasn’t during the sermon, it was during the singing… or actually, maybe that makes more sense 🙂

Everything in life is mind over matter, so my mission… increase my mind and decrease my matter. 🙂

• I am going to get back into regular meditation, it is so important, and I believe very healing, physically and mentally.
• I am going to get back to exercising (within reason… yes, I do have a tendency to go overboard…)
• It is o.k. to cry, shake it off and get back up (even when I feel like I am crying over nothing)
• I will remove all negative influences from my life
• I will find good in everything, no matter how bad it may seem
• Continue range of motion
• Work on short game 🙂

Weird note – when I drink something cold I can feel it throughout my chest, as if someone was spraying cold water across my chest wall!  I have decided that what is causing this is the sensitivity of the recently surgery traumatized tissue. of course there is NO medical support whatsoever to support this theory… lol, just a lay person thinking ‘what the heck’, now that is really weird, what could have caused it… LOL – jacked up temperature sensitivity 🙂

A continued thank you to all family and friends for your support, may God fill you with His love as you go through your day.