LISTS!

I am pretty sure I already mentioned this once before in a post, but I LOVE LISTS!  Doesn't matter what the topic is, I just love writing them.  So, I figured making several lists to summarize my year would be a fun way to blog this time.  I hope you enjoy reading my lists as much as I loved writing them!

Cancer-related stuff I have had to endure throughout 2013 (in order the best I could remember.  When it is in a list like this, it really makes me say, "WOW!" I wrote about most of these in past blogs, so feel free to read other posts if you would like more information.)
- Kyphoplasty & Bone Biopsy - Mid January

- PET CT Scan #1 - February

- Chest Port Insertion -  Monday, February 18

- Radiation fitting - Thursday, February 21

- Started Chemo - Thursday, March 7 - Did not finish until September 19 - 4 different types of medication - continued Herceptin every 3 weeks since Sept. 19 and will continue through mid April - then everything will be reviewed and my treatment path will be decided from there

- Radiation to my back - End of March

- More than 20 blood tests - my poor veins

- 4 or 5 Echocardiograms (somehow I lost count!) - An ultrasound of my heart to make sure it is strong enough to handle some of the chemo meds.

- Ongoing appointments with my oncologist - at this point it is over 20!

- 4-5 appointments with my radiologist & neurosurgeon

- Chest port infection - End of September through October - took 4 different antibiotics before the final one actually made a difference

- Chest port removal - Monday, Oct. 14

- NEW chest port insertion - Friday, Oct. 18

- Annual breast MRI

- 3 back MRIs with and without contrast - all of them required multiple attempts for the IV due to my tiny veins

- Began physical therapy in November - had 7 appointments - will continue this in the new year as well

- PET CT Scan #2 - Dec. 30 - What a way to end the year!  These results better be better than the first time!!

The Unexpected Silver Linings to Chemo (I had to find someway to get through a crappy situation)
1. No shaving for months - this meant saving on razors and our water bill because my showers were shorter, ha!

2. Loss of hair - no washing, no drying, no styling, no haircuts - all of those saved time and since it was summer, I stayed cooler.  However, now that my hair is back, I love it more than ever.  I am working on getting some sort of style, but people tell me I can really pull off short hair.  Frank also liked to point out that there were no longer piles of my shedding (which happened on a daily basis before chemo) all over the bathroom floor, or in our bed etc!

3. No more psoriasis - I was so worried my scalp would be covered with gross, flaky patches once my hair fell out.  Thankfully, certain chemo meds are given to control psoriasis so I did not have to deal with all that itching for months.  Unfortunately it has started to come back, but it was nice to get a 6 month break.

4. Period - My "friend" only visited 7 times throughout the year instead of 12.  I did not have my period all summer which was nice for the beach and swimming!  (Sorry guys, I know you don't like reading about this.)

5. Diet -I could pretty much eat anything I wanted, except anything raw and uncooked.


Personal Accomplishments - in no particular order (some big, some really small, but all noteworthy)
- Before I had my radiation and the cancer in my back started dying, I was unable to sleep in bed with Frank.  I had to sleep in a recliner next to him.  I am happy to say that I am back in my own bed and I do not need tons of pillows propping me up.  I am able to toss and turn and kick the crap out of Frank all night again.  He loves it, haha!

- I finally got my new car.  It was a sad day because I had to say goodbye to my precious green beetle, but it was time to grow up.  I need a mommy car so that Hudson has somewhere to safely sit.  I got a blue Subaru Outback.  I love it, but when I see a green beetle drive by a little part of my heart aches :(.  One day I will get another one.

- In October I began dropping Huddy off and picking him up from daycare one-two times a week.  It had been many months since I was able to do that myself.

- I once again hosted the Miles for Kyle 5K in September.  Last year I had a broken back (and did not know yet) and this year I was still going through chemo.  I must be crazy.  We raised a ton of money for Kyle's scholarship though, so it was all worth it.

- I FINALLY picked a paint color for the kitchen (Palladian blue by Benjamin Moore) and Frank is almost done painting.  I helped by taping and painting under the bar since that did not require as much physical work.

- I can push Huddy in the stroller and take him for walks without the assistance of anyone.

- I vacuum, do some laundry and unload the dishwasher again.  Sometimes my back is still too tired, but the important thing is I AM able to do it.

-I usually go days to weeks WITHOUT Motrin or Tylenol because my back does not hurt everyday, all day!  YIPPEE!!

- I no longer need help getting in and out of shirts.

Goals for the 2014
1. Read more
2. Ride my bike again
3. Go on a real vacation
4. Lose more chemo weight
5. Craft more
6. See my friends more often
7. Have more game nights
8. Try to enjoy cooking
9. Re-do the foyer and powder room

Another update

Being a teacher, I am taking advantage of this snow day.  I have been enjoying my time with Hudson.  He has been talking up a storm, adding new words to his vocabulary daily!  He loves my "maymen" (snowmen & penguin) stuffed animals right now and spends hours playing with them.  I am trying to get a cute video of him to post, but as soon as he sees the camera he stops what he is doing to say, "cheeeeee."  Although adorable, it is also a bit frustrating.  Hopefully a video is to come!

I have also been productive.  I already vacuumed (which I could not do about 3-4 months ago), threw in a load of laundry (easier than months ago, but still cumbersome because of all the bending required to unload the washer) and made double chocolate, caramel, sea-salt bark (I found the recipe on Pinterest.  Here's hoping it lives up to my expectations because the pumpkin brownies I made the other day were a bust!) Now I am finally writing an update before watching another cheesy Lifetime Christmas movie and crafting (2 more projects I found on Pinterest.  I am making a felt tree for Hudson and his cousin's to play with on Christmas eve.  I will post a picture when it is finished.)

Quick update:

I have an infusion of Herceptin on Thursday, Dec. 12.  No appointments that day, so hopefully everything will be quick!

I had an ECHO (heart ultrasound) on Friday, Nov. 28 and will get the results soon.  That is the test they do to check my heart's function to make sure the Herceptin is not causing damage.  They will be every 2 months.  Not invasive in anyway, just annoying.

I also had an MRI a few weeks ago.  I have an appointment with my neurologist and radiologist on Monday, Dec. 16 to discuss my progress.  Hoping the tumor has been shrinking over the past 3 months!!

I started physical therapy a few weeks ago and I think it is going well.  I admit, I could be doing more exercises at home, but after working all day I am exhausted.  Taking care of Hudson before crashing into my pillow is still about all I can handle right now.  My energy is slowly improving, but I still rely heavily on coffee (either that or I am not addicted, which is quite possible) to get me through the day. 

Continued prayers and positive thoughts are invited as I am not out of the woods yet, but things continue to improve.

Thanksgiving was far more enjoyable this year.  Last year I could not be part of the festivities in anyway.  I was in far too much pain and still only thought I had a compression fracture.  I spent the night sitting on a soft arm chair with a heating pad while my family took care of Hudson.  This year Frank and I hosted my mom's family.  I was more involved, although I have to say my mom and cousin Erica did the majority of the cooking (which I do not mind since cooking is not my favorite thing). 

I was in charge of separating the leftovers  which ended up being a very overwhelming and daunting task for me.  Since finishing chemo I am still suffering from "chemo brain."  Mutil-step tasks sometimes seem impossible for me.  I see everything in front of me and I cannot think of how to start.  My brain feels like someone is spinning like a top and it is unable to stop on first step of the task in front of me.  I also struggle to find the words I mean to say and sometimes say a word that really doesn't make sense.  It frustrates me because I feel that I look less intelligent, especially in a professional setting.  I know people understand that I am dealing with this, but my patience is dwindling.  I want to be in charge of me again.  I am sick and tired of dealing with chemo effects.  I need to thank my family, friends and especially my co-workers who deal with me on a daily basis and have far more patience than me.  My co-workers help pick up my slack and step in oftentimes right when I need them to.  I want them to know how much I appreciate everything they do for me.  They are really an extension of my family and I am so lucky to work where I do!!  I have said it before, but taking the leap of faith 5+ years ago to become an ESL assistant in a district I never heard of before, was the best decision I EVER made (well that and marrying Frank of course!).

I am looking forward to Christmas more than I ever thought possible.  Hudson is 20 months and I think he will truly be excited on Christmas morning when he comes downstairs and sees all his gifts.  Last year was wonderful too, but it was more for Frank and me.  Hudson was too young.  We did not even wrap a single gift.  This year I can't wait to watch Huddy rip the wrapping paper and then pause to throw out his "ka-ka" (trash).  He is a very clean little boy!

Thanks to everyone who continues to read my blogs and follow this journey.  Wishing you all happy holidays and a VERY healthy new year.

What a pain in the port!

Sometime in September I notice that I had redness along the tube of my port that runs along my pectoral muscle just under my skin.  At some point Hudson had banged into it, but I never thought much of it.  A few weeks went by and the redness did not go away and it started to hurt and was warm to the touch.  Since my brother has had cellulitous several times, I knew that was not good, so I called my doctor.

After an unexpected trip to Methodist, they decided to put me on a week of Keflex just in case it was infected.  Well, I finished the meds and there was no change.  I went back down to the doctor so she could see it again a week later and they felt it was inflamed, not infected.  So, I went home still in pain with no end in sight.  Another week went by and it was time to get my next infusion.  Well, they didn't like how it looked so they put an IV in the side of my left forearm and told me they wanted me to get the port removed!  UGH!  That was not what I wanted to hear, but I also wanted the pain to end. 

On Monday, October 14 I had my port removed and on Friday, October 18 they put a new one in, on the other side of my chest.  (Oh I forgot to mention that the day of the infusion the week prior I also had an MRI which required an IV and she had to stick me 3 times! So within 10 days I had been pricked 7 times in the same arm/hand! OUCH!!!)  I was put on another round of antibiotics, a different drug, and told it should heal up quickly now that it was out.  WRONG!!!!  It did not heal up.  It hurt a little less and it was not hot anymore, but it was still red and swollen.  I went to get my stitches out and the doctor still did not like how things looked so she had me start another round of the same drug.  

This past Thursday (Oct. 31) I was back at the doctor for my treatment.  She was still not happy with how it looked so I am on my third medicine.  This time she gave me the big gun, Levoquin.  According to the fact sheet from the pharmacy, this medicine is often given to people who have been exposed to Anthrax or who have the plague.  If this medicine does not clear up this port, nothing will!!!  Downside...I was finally able to have sushi again so we went last night.  YUMMY...and then I got home and spent a nice long while in the bathroom. The major side effect of the drug...diarrhea.  Never fun, but I am always looking for the silver lining.  Hopefully I can jump start my chemo/steroid weight loss, haha!!

If this does not work I have no clue what the next step will be. Hopefully nothing too invasive or painful.  

My breast MRI showed nothing in either breast and my right lymph nodes are visibly smaller when compared to the MRI I had before starting chemo! I still need radiation and months of Herceptin, so those 2 things should take care of whatever is hanging around.

Right before Thanksgiving I will get another back MRI.  Fingers crossed that there is some type of visible change in the cancer/inflammation.  

I will also have another heart ultrasound around Thanksgiving.  I now have to get them every 2 months instead of every 3.  They are just taking extra precaution because whatever number they track dropped a little bit.  It is still in the normal range, but they want to make sure it does not get below that range.  This is unfortunately the only major side effect of Herceptin. 

Life is more normal than a few months ago but I am still dealing with some residual issues from the chemo.

• My nails are weak and are growing out and breaking and separating.  Sometimes this is pretty painful.
• All of my fingertips are numb and covered with tough sort of callousy skin.  Hopefully this will go away over time.  It makes opening most things difficult. It also makes me extra klutzy.
• My joints ache, especially my knees, ankles, wrists and fingers.  This is actually a side effect of the Herceptin.  It should go away once I am done the medicine.
• Getting out of bed in the morning sometimes feels like I am stepping onto broken glass, but that only lasts a few seconds.
• Chemo brain is lessening, but I can still be a little out there!  Some of that is just me though, ha!!!
• Fatigue!  I drink a lot of coffee now.  I should start to feel back to normal sometime around Christmas they said.
• I gained nearly 30 pounds. I have only lost about 2 1/2 of them.  I would like to lose a lot more but I know that has to be a slow process.

Good news:

• I am able to start PT and now that my new port is healed, I will schedule it for very soon.
• I can drink alcohol again.  In moderation of course.
• Salads, sushi, fresh fruit and ground meat are all back in my diet.  YIPPIE!!!!
• I am sleeping through the night WITHOUT the help of any drugs!

A non-cancer update:

I am loving watching Hudson grow and change. He is talking up a storm and is such a happy boy.  He was a FedEx guy for Halloween.  He wasn't too sure about trick-or-treating at first, but by the third house he was thanking everyone for the treats.  So cute!

Now that I am feeling better, I am thinking about getting things done around the house.  This past weekend we bought a coffee table, bought the paint for our master bath and I FINALLY picked out the aqua for the living room and kitchen!!  

The coming months

Today was my last Taxotere infusion which means, least chemo! YIPPIE!!!  That also means no more side effects from steroids after tomorrow evening. (Which means less or no more insane hunger pains, no more moon face, no more major mood swings.) No more numbness, dryness, or slight tingling, in my fingertips.  No more arthritic-like tightness in my hand, foot, knee and ankle joints.  No more dry mouth.  No more mouth sores.  No more dry or watery eyes.  Etc, etc etc...

I am so ready to move on from all this.  I have no idea how long it will take for all of the side effects to subside, but the fact that within a few weeks I should notice feel more like myself is extremely encouraging.  I am back to work and back to mommy-hood and hopefully back to being a homemaker too, although I do not mind sharing the many tasks with Frank!

In the coming months a lot is happening even though I am done with Taxotere.  Next week I have to get another echo cardiogram to make sure there is no damage to my heart.  They happen every 3 months.  I will also get my first "long" infusion of Herceptin.  I will get it for an hour and a half instead of 45 minutes.  Since it will be my last weekly infusion, Frank and I are taking soft pretzels for the whole staff and all the patients to celebrate.  YUM!

On October 10 I will begin getting infusions every 3 weeks.  I will also get my breast MRI.  They will check my lymph nodes as well.  Hopefully everything will be clear like they expect.

On Nov. 21 I will get my next back MRI.  This will be my second scan since radiation.  Hopefully this time some of the inflammation will be down and the doctors can get a clearer picture of the cancer shrinking!

The infusions of Herceptin will continue every 3 weeks until March or April.  I will continue to have back MRIs and echo cardiograms every 3 months, breast MRIs and mammograms at least once a year.  Sometime in April or May at the end of the Herceptin infusions I will get another PET scan.

I am through the worst of it.  Chemo is done.  Now it is time to move forward.  Time to begin physical therapy to rebuild the strength in my back so that each day is a little easier.  I still have a long road, but thankfully it will be less taxing and without as many drugs!

In celebration of my last day of chemo my family and friends have given me flowers.  They know me so well!  I do always love getting flowers :)

                                                                  Flowers from the hubby!

                                                                Flowers from the in-laws!

Really quick update

I sent this email out at work to give them a quick update.

just wanted to give everyone a quick update on my health.  I will be finished with weekly treatments on September 19!!!!  After that I will go back to 3 week breaks between treatments and will only receive one medicine which is NOT chemo.  There are no physical side effects so my hair will continue to grow and grow!  Speaking of my hair, I have not worn my wig since June 27!  As soon as I had enough hair to cover my scalp I shoved that thing on a shelf in my closet. 

This morning I saw one of my first grade students from last year.  Here is the conversation we had (remember I teach English as a Second Language).

"Hi Stephanie!  It's Miss Quinn."
With a confused stare, "Is you cut your hairs?"
"I did, does it look good?"
"No."
She never did have a problem sharing her opinion!  At least she is honest and it made me laugh.

I had an MRI on my back about a month ago.  The area was still too inflamed from the radiation to show too much change, but nothing is worse.  My lymph nodes are back to normal size and I will not need surgery to remove them.  In a few months they will radiate them to make sure there are no microscopic cells floating around ready to cause another problem!  I will have more scans in Oct. and Nov. but at this point my all my doctors are happy with my progress.  They think things are moving along as expected and they feel we will see more of a change (as in the cancer is shrinking) once the "injury" from radiation has had more time to heal.

As I was driving into school this year I thought back to last year at this time.  I was in so much pain and had no idea why.  I could barely get out of bed in the morning and never slept through the night without heavy pain medication.  I can now carry my son all over the house, push his stroller and do normal things like grocery shop.  We ordered my new car so that I can have a car seat in the back and begin taking Hudson to daycare myself again. 

Thank you for everything you did last year to help me through the tough times.  I never thought I could handle something this difficult, but the support of colleagues like you made it possible.  I am looking forward to this new school year and the opportunity to work with only Kindergarten and first grade for the first time! 

Once the 5K is over I will hopefully have more time to write more blogs.

Comments from a Caretaker

A few months ago I had the chance to see just how far my words were reaching.  A perfect stranger, Cameron, sent me a message asking me to read his wife's story.  He was willing to share his personal story with me and give some important insight from the often overlooked caretakers.  Cancer does not just affect the patient.  It is a family ordeal.  This wonderful husband helped his wife through the battle of her life and more than 7 years later they are sharing their story.  Please read his words and forward his story on to anyone who may benefit from it.

Below are Cameron's exact words:

Focus on the Positive When Dealing with Cancer

Most people have experienced a day that will forever be in their memories. My wife and I will never forget November 21, 2005. This was the day that my wife was diagnosed with malignant pleural mesothelioma. As for me, this was the day that I began the task of caring for a cancer patient. Before that, our lives had never been better. We had just celebrated the birth of our daughter Lily a few months earlier, and we were looking forward to the holidays, excitedly planning for our daughter’s first Christmas.  However, the cancer diagnosis quickly changed our plans.

Once the doctor began to explain mesothelioma to us, I understood the challenges that would come with being my wife’s caregiver. Mesothelioma is an extremely deadly disease, and most people diagnosed do not survive past a year.  After the doctor told us the treatment options that we could pursue, my wife was still shocked and speechless.  We had three options:  a local university hospital, an excellent regional hospital that unfortunately lacked a mesothelioma program, or a specialist in Boston by the name of David Sugarbaker.  We waited silently for Heather to show some sort of interest in one of the options, but she was shocked and utterly terrified.  I knew she needed help, so I made the decision for us to travel to Boston for treatment with the mesothelioma specialist.

Over the next two months, our lives consisted of complete chaos. Since I had to take care of Heather, I could only work part-time. As for Heather, she could no longer work after she was diagnosed with cancer. Because I was taking care of my wife, making travel arrangements to Boston, and taking care of Lily, I became overwhelmed with these responsibilities. I was afraid of losing Heather, and as much as I tried to stay positive I often found myself picture the worst case scenario – Heather passing away, and me being left to raise Lily alone. More than once, I found myself breaking down in tears on the kitchen floor under the pressure and fear.  However, I never let Heather see me in these weak moments.  I always did my best to remain strong and positive for her.

Thankfully, we had friends to give us help: everything from words of encouragement to desperately needed financial assistance. Words cannot express how grateful we are to them. My strongest advice to anyone going through a situation like this is to accept help every time it’s offered.  There is no room for pride when a loved one’s life is on the line.  Even the smallest offer of help can be a weight off your shoulders, and will remind you that you’re not in this fight alone.  

There are not many things in life that are more difficult than caring for a cancer patient. With all the emotions and pressures that a caregiver may experience, it is important to never give up hope.  Bad days are inevitable, but even in those moments of weakness you can never give up hope that you will come through this okay.

After undergoing surgery in Boston and months of treatments, Heather beat mesothelioma, a feat accomplished by far too few people. Seven years after her diagnosis, she is healthy and cancer-free. This experience taught me so much about what people are capable of when they simply never give up hope and always believe in themselves.

I took those lessons to heart, and went back to school two years after Heather’s diagnosis.  When I graduated, I was at the top of my class and was given the honor of speaking at graduation. I told my class that just a few years earlier, I never could have imagined being on that stage, but as long as we never give up hope, anything is possible.  Lily and her mother were in the audience to cheer me on, and that was the greatest reward of all. 

His video link:  http://www.mesothelioma.com/heather/#.UgKn1NKG2So 

Please share your caregiver stories and tips with me and all my fellow readers.  I would love to hear from you.  Thanks for reading!

A Couple of Things....

So a bunch of things have happened since my last entry. 

 

 

I scheduled my follow-up MRI for two weeks from today.  I am terrified to get the results.  The actual test is no picnic either, but I am scared they will find that the radiation did not get rid of all the cancer!  Please cross your fingers & toes, send good vibes, prayers etc.  I will need all the positivity  possible to keep me going.  Whenever I have tests my stomach goes nuts!  I can hardly eat, and I spend a lot of time in the bathroom.  Maybe I will lose pound or two of the nearly 12 pounds I have gained thus far.

 

 

About two weeks ago I finally got my meet my new friend, Marjorie Stromberg Miller.  The wife of one of my childhood friends, who is also a fellow breast cancer survivor.  Please follow her blog as well... http://marjiepinkandpearls.blogspot.com/  She is such an inspiration and has done so much to educate the public about the young women effected by this disease.

 

 

She has made several connections throughout the past two years and one of those is with Fighting Pretty https://www.facebook.com/?ref=logo#!/FightingPretty?fref=ts  They are a group that helps women fighting cancer to feel strong, and beautiful every day!  They send out pretty packages to women fighting cancer full of wonderful things to boost their mood and make them feel pretty!  Below is a picture of my package (minus the fun water bottle.  It was in the dishwasher because I use it so often!) Yes, that is lace underwear in the middle and the thing that looks like a rose is an awesome neon pink scarf with leopard-print trim.  Getting the package was such a surprise and truly came on a day that I needed a boost.  The best part is the mini-pink boxing gloves.  The women who started the group ask that each recipient hold onto the gloves while they are going through their fight.  Once they are finished, they write their name on them and send them on to another woman who needs them to help her through her fight and so on.  I think that is so cool.  What a neat way to connect women who may never meet.  Thank you Marjie and Fighting Pretty for my package.  I love it!

 

 

On June 22 I went to Relay for Life and participated as a SURVIVOR!  It was very hard for me.  I did not talk to many people.  I did meet another young woman, named Meredith, who is in her early 30s, has a four year old and two year old daughter and was only 3 weeks post DOUBLE mastectomy!  I was shocked she was walking laps around the track.  I did feel an immediate connection with her and we shared our stories but other than that I felt like hiding.  I cannot explain it, but I am not ready to be part of the survivor's community.  It is too overwhelming still.  I appreciated my friend Carolyn for including me (she runs the event at North Penn High School) but I think I need to hold off on events like that for a while.  I am not ready to identify myself in that way.  All in good time....  Below is a picture  (from left to right) of me going through my bag-o-goodies, signing the pink, Survivor's Fire Truck, walking the survivor's lap around the track and Frank and Huddy watching mommy walk.

 

Have I mentioned how awesome my husband is?  Well, if not, he is AMAZING!  He is so supportive, comes to any appointment I ask him to, cleans up around the house, does yard work, takes care of Hudson, etc, etc.  We have had a difficult three years, and he has been by my side all along.  Even when I was bloody, incoherent from Morphine, drains were hanging from my body and I was unable to take myself to the bathroom or even get out of bed.  He has put up with major mood swings, crying, yelling, cursing, and sometimes laughing.  I may not always let him know, but I am very grateful to have him in my life.  (I am very lucky to have all my family and friends as well!) 

 

When he got home from work last Monday, after my chemo treatment, he walked in with these lovely flowers just because.  He got them at Produce Junction in three different bunches because he knows I love to arrange flowers into vases myself.  He figured I would need something to do the following day while I was going crazy from the steroid power!  He was right.  I spent more than a half hour messing with them and I thought they looked pretty nice.  They are still alive and going strong a week later :)

Treatment went smoothly today.  I did not have to see the doctor today so that saved more than an hour.  I am hoping there will be more weeks in the future when I can skip the doctor and just do treatment.  It makes everything so much faster.

I just took an Ambien.  Sweet dreams everyone!

Steroids...UGH!

At this point I have mentioned several times how much I DISLIKE the side effects of the steroids I have to take to supress the side effects of the chemo.  It seems silly that I take a TON of drugs to get rid of problems just to deal with a whole bunch of other problems.  I had a productive conversation with my doctor today and we agreed, after I shared my daily steroid play-by-play with her, that I could cut back on the amount I am taking.  Here is how my weeks have been unfolding...

Sunday - Full of unharnessable energy.  At 730 am I take my first 8mg of steroids.  By 8am I am full of energy and pacing around the house.  I am unable to harness any amount of energy to actually accomplish anything.  I compare myself to a student who has ADHD.  I imagine if they could find a way to explain how it feels to be inside their brain it would be how I feel after the first dose of steroids.  I have 20 different ideas I would like to complete but my brain is completely unable to focus on any one of them for more than a few seconds.  Therefore, I am never able to finish anything.  Sometimes I start to staighten up and within a minute I am walking away thinking of something compeltely different.  ANNOYING.  Just around the time it begins to calm down I have to take 8mg more at 730pm.  Once again the pacing begins and I scroll aimlessly through Facebook, Pinterest etc or flip through the TV because nothing keeps my attention.  By 1030pm I take an Ambien so that I can hopefully be tired enough to sleep by 1130pm.  I have to time everything correctly so that I am not wide awake at 4am.  This is my summer vacation.  I should at least sleep later than my alarm for work!

Monday - Chemo day/I-might-lose-it-on-you-at-any-time-day. When the steroids are given through the IV they do not bother me as much.  Well, it is either that or because they also give me 50 mg of Benadryl and are pumping me full of toxic metal.  One or the other.  I always fall asleep during the last hour of my infusion and then kind of sit in the car like a zombie the entire ride home.  Once I am home I am awake, but again not able to focus.  I have to take an Ambien to sleep again.  Ask the baby gate how it feels to get the brunt of my wrath!  After my first week of these new drugs I had a MAJOR meltdown.  I was trying to put the gate at the top of the steps so Huddy would not fall down them.  Well, instead I shut the gate on my thumb and a whole lot of F*CK this and F*CK that came flying out my mouth.  Then I stormed upstairs and threw myself on the bed and SOBBED for a good ten minutes.  The whole time just yelling and wondering how 5 adults (my mom, dad, stepmom, husband and brother) could not put up the gate for me or keep an eye on Hud.  It was not my best moment!  After my cry, I came down, apologized and it was over.  But yikes!  I never know when a roid rage will get the best of me.

Tuesday - I become a genius! - All those ideas I could not focus on become ALL I can focus on.  I come up with ideas for work, the house, random projects that really do not need to be done and they all come flying out of my mouth a milllion miles a minute.  I sound like someone who drank 4 cups on coffee before even getting to work.  I write them all down so that I do not forget them.  I thought of some great ideas for our ESL orientation next September as well as ideas to utilize our technology teacher, ha.  I also wrote down every project I hope to get down this summer around the house.  Hopefully I can harness my energy long enough to actually do them.

Wednesday - Do not bother looking at or talking to me! - My husband and mother have been forewarned that if they would like to keep their sanity, they should probably avoid me at all costs.  EVERYTHING pisses me off.  Especially answering questions.  It doesn't matter if they are asking me if I would like a drink or where something is.  They all piss me off.  I will not answer them.  It is better for everyone if they figure things out for themselves on Wednesdays, haha. 

Thursday - The grand exit of the steroids.  I believe I live through an exorcism on Thursday nights.  I sweat, cry, flop around in bed and have terribly realistic nightmares.  I wake up at least once an hour.  I change my pajamas multiple times because I am soaked from sweating.  I pee at least 15 times.  It is a terrible night.  No amount of Ambien is going to help me sleep through it either.  It SUCKS!  But, by the morning the steroids are out of my system.  I just need to change my sheets and take a 30 minute shower to feel clean again. 

(Tuesday through Thursday also comes with my LEAST favorite side effect...ACID REFLUX!  It is bad.  I take 75mg of Zantac each morning and each night and suck down as much Gaviscon as I am allowed and still everything burns my throat.  I am talking saltine crackers, bananas...everything!  I can sometimes stomach a Special K protein shake without a lot of kickback but I do not eat much on those days.  Cutting down to half the amount of steroids will hopefully cut down to half the amount of acid.  Fingers crossed.)
Friday & Saturday - Pretty much back to normal - It seems I get 2 good days out of the week before having to start the routine all over again.  Thank God this is not a forever thing.  It is only for about 10 more weeks. 

I forgot to mention about the hunger.  I eat like a beast on Sunday and Monday.  I am the most hungry then.  I have gained a total of 10 pounds in the past 3 months.  I am not thrilled about it by any means, but my doctor is glad I am not losing.  Plus she told me I was just far too skinnny to begin with.  I tend to disagree but once I am done the medicine I can get back into shape.

Good news is - NO STEROIDS next week.  I have to take a week off of the Taxotere for a few reasons.  I already have a little bit of nerve damage to the very tips of my fingers.  If I do not take a break from the meds, the damage could become permanent. I do not want that.  Also, my fingernails are more likely to FALL OFF without taking a break.  That is just GROSS.  I will gladly take a week off to save those babies.  I will most likely still have lines that show up in the nail beds and look like fungus, also gross, but that will eventually grow out a few months after finishing the meds.

So, the point of this entry...steroids suck, but not as much as cancer.  All the things I am doing are to kill those little asshole cells so that I can move on with my life.  As much as it sucks now, it makes for a funny blog entry.  Hope you had a few laughs from this one.  I sure did.  I choose to laugh.  It is more fun than crying!

Talk About a Stressful Day...

Poor Hudson had a little sore under his left armpit over the weekend and when I checked it this morning it had tripled in size, was raw and peeling and he cried if I touched it!  I knew he had to get to the doctor, but.....I had chemo.  So, the phone calls to grandparents commenced.  We were able to get Frank's parents and my mom to help watch him and get him to the doctor.  THANK GOD!

But, that meant we left a few minutes later than necessary to get to the doctor.  No biggie, right?  WRONG. We drove more than 15 minutes away with the car seat in the back of our car!  So, we turned around and called the doctor to left them know we would be a little late.  Somehow we were only 16 minutes late, impressive seeing as rain usually means all people forget how to drive.  When we pulled into the parking lot, I opened the door to grab my wallet and of course my entire laptop bag landed directly onto the end of my second toe.  Damn that hurt.  It still hurts, actually!

While I was at my appointment, everything went smoothly.  All drugs were the correct dosage so there was no extra waiting.  Instead of leaving at 5 we were home by 4 this time.  All positive things!

The worst part of the day was waiting for my mom to call us and let us know what was wrong with Hudson. I cried on the drive to the doctor because I could not be with him at his appointment.  All the moms out there know how much you want to comfort your sick babies.  He has a form of cellulitis.  The doctor swabbed it to identify the actual bacteria, but until then he is on an oral and cream antibiotic for the next week.  He cried in the tub when the water ran down his arm, poor thing.  I gave him Motrin to help take the pain away for him.

When we got home it was spitting outside a little but we took Huddy out to walk around the driveway anyway.  He had a long day, but loves his time outside.  I went out without a hat and let the rain bounce off my almost bald head.  A while later we were sitting on the porch and my mom came over to me with a strange look on her face.  "What's on your head?" she asked.  I had no clue.  After closer examination, she realized it was bird poop.  Apparently the rain drops I felt under the tree were actually bird shit!  It was a three baby wipe cleanup! I know the belief is it's good luck when a bird poops on your head and I certainly could use any amount of luck.  But, to whoever spreads the luck out there, do you think next time it could be a little less messy?  Perhaps a four leaf clover or a cute little ladybug landing on my hand.  Thanks!

New Round of Treatments

Well, it is noon (on Monday, June 3rd) and I have yet to begin my infusion.  My appointment with my doctor was scheduled for 10am but I did not see her until around 11am!  We did not get across the hall to infusion until 1130 and I am still sitting here waiting for my medicines.  Today is going to be an extra long day.

Finally, got started at 12:30pm!  The round of drugs starts with 50mg of Benadryl!  I will be sleeping in no time.  Although the steroids might wake me right back up.

**It is now 6:07am on Tuesday morning and I am wide awake thanks to those pesky steroids.  I have to take a dose at 8am and another at 8pm so I am hoping to get a lot of stuff done around the house with the crazy energy they give me.

Anyway, let me get back to sharing about yesterday's treatment.  So, I was very tired after the Benadryl but unable to sleep.  I was out of it though.  I was talking slow and my eyes were heavy.  During that time I had to wait for almost an hour for the pharmacy to remake a new dose of the steroids since they made far too much to begin with.  That held everything up since nothing else could be administered until after I got them.

During this time of waiting, I thought it would be a great time to send an email to my co-worker asking her to pay for my coffee order since I was going to miss the deadline.  Side note: I teach English as a Second Language and my co-worker is bilingual in English and Spanish.  I however, studied French for seven years (know hardly any anymore) and only took one semester of Spanish.  Before I went to hit send I tried to proofread my email through the blurry Benadryl eyes and much to my surprise, the email was in SPANISH!  Not sure how accurate, but from what I do know, I am sure I asked her..."Would you pay...coffee with milk?  Haha!  Apparently a different part of my brain was triggered when that IV began to drip Benadryl.

**It is now after 9pm on Wednesday night and I am just getting around to finishing up this entry.  I had a very good day yesterday.  The steroids kept me going until about 2pm.  From 11am until 2pm my mom and I went to Chipotle for lunch, AC Moore for craft supplies and Carter's to find a new hat for Huddy's big head (no luck there).  We got home and I crashed.  I was out for over an hour but other than fatigue, I felt great.  It was not comparable to the last treatments at all.  No body aches, no nausea, no dizziness, just a little tingly in the heals of my feet for a few seconds twice (that can become more of a problem as the medicine begins to build up in my system though.)

Today I went to work until 2pm (or as I like to call it, nap time).  That is when I hit the wall of exhaustion again.  But other than that, again I felt great.  I was able to enjoy our morning picnic with our ESL students and had a chance to begin cleaning up my classroom.  I came home, took my nap, had dinner with my in-laws and then came up to bed to finish Hudson's photo book.  The 50% off sale ended tonight, so I had to get it done!

Now I am trying to calm down so I can get a decent night's sleep tonight.  If all my treatments are like this, my summer will be pretty enjoyable!

Q & A

Hello fellow readers!

It has come to my attention as I run into people around town or at work, that people have lots of questions for me.  I am an open book.  I started this blog to educate people about my experience and the more I can help others, the better.

So...you got questions...I got answers.  I am in no way claiming to be an expert, but I will speak from my personal experiences to help inform.

Feel free to post questions on here in the comments section or message me on Facebook.  You can even post the question right on the Event, Wear Pink March 7, 2013.  I will read through every question and write a big question and answer entry.

Thanks for reading!

PS - Stay tuned for some entries from the husbands of fellow cancer survivors.  I think it is important for them to share their point of view as well.

Quick Update

The side effects from my last treatment were not as bad.  My doctor and I were able to talk and figured out a better combination of drugs to help suppress the side effects.  I was not overly nauseous and the side effects of the steroids were pretty minimal.  Everything that is, except for the unforgiving hunger pains.  I have gained nearly 9 pounds since I started my treatments!  I thought they were worried about me losing weight, ha.

I have been working full time since the Wednesday after treatment and we have been getting some little projects done around the house.  Frank was able to paint the shutters and the front door.  I was so happy to get rid of all the dark brown.  Instead, every time I pull into the driveway I am greeted with a cheery green!

I am trying to get back to my life and color always improves my mood. One of my favorite things to do is plant summer flowers in my colorful pots. That is what I have on my agenda for this weekend.  I will post some pictures of the finished products.

Chemo Treatment #3

Since my next treatment is less than a week away I figured I should probably write about last time.

During the treatment I ate water ice and had a Slurpee to help keep the metal taste out of my mouth.  The craziest part is as I type this I feel a twinge of nausea.  Any food/drink I have during treatment is ruined.  Not sure how long that will last, but hopefully I can find something to eat or drink next week to keep my mouth cool and get rid of the metal taste.

I asked for less steroids because I could not handle having heart palpitations and hot flashes all the time.  Getting less worked to take away those side effects, but I ended up having a lot of nausea.  I am not sure if those two things are correlated, but if so, I will have more steroids again this coming treatment and take other meds to deal with the heart palpitations.

As for the burning, aching skin...it lasted longer, but I was able to control some of the pain because I was told I could take Motrin this time.  It lessened the pain, but did not take it away by any means.  It was under control enough that I slept most of the night and did not cry so that was an improvement!

Overall, this treatment wiped me out longer.  I had a harder time bouncing back and had less energy.  I felt "blah" for several days.  No motivation, no affect.  Just existing and surviving one side effect after another.

I was able to escape a little this time because I discovered the show Scandal!  One word...ADDICTING!  I think I shed a few tears when I had watched all the past episodes and had to wait for a new one to air on ABC.  I am also working on watching all past episodes of Downton Abbey.  If I have to find the silver lining in my days of regeneration  I would have to say the best part is my ability to indulge my love of TV and movies.  I catch up on the DVR and watch sappy chick flicks and cheesy Lifetime movies!

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Each time I write an entry I have my husband Frank proof read it.  He usually does not offer ideas (because he's not allowed) about what to write, but he brought up a good point tonight.  I write about how the treatments are, because I want to educate people about chemo.  It is such a scary thing and I want to bring it to light.  However, I never let my readers know how I am actually doing beyond chemo.

For one thing, I am still working.  Treatments are on Thursdays every 3 weeks right now so I miss the Thursday of treatment, Friday, Saturday, Sunday, Monday and sometimes Tuesday.  I head back to work on Wednesday, Thursday and Friday that next week but only work half days as my energy slowly comes back.  By the next week I am working full time again!  I work Monday through Friday and the following week I can work Monday-Wednesday since my next treatment is Thursday.

I teach elementary school so lots of people wonder how I can do that with all the germs around.  For one thing, I am anal about my students using hand sanitizer.  They all have to use it on the way into my classroom, any time they pick their noses, suck their fingers, etc.  I use hand sanitizer throughout the day too.  I also wash my hands all the time.  This time of year we are able to open the windows so we can air out the classroom.  Since I have been teaching for over 7 years now I have been exposed to the common illnesses dozens of times.  That has helped me develop a stronger immune system so my doctor was fine with me working.  If there is an outbreak of flu or something highly contagious I will not be able to work, but with only 29 student-days left, I am hopeful I can work until the end of the year.

I have a lot less back pain so working longer days is becoming easier.  So is passing out papers, pushing in chairs and other daily classroom routines.  My friend's husband is a physical therapist and he came over the other night to assess my back.  He was able to give me three stretches to do to help put my back where it belongs.  Surprisingly, after a few days I honestly notice a difference.  I am a little less curved and my abs are easier to flex.

My friend, who I have known since birth, has been so helpful throughout my treatments.  Her husband, the physical therapist, is also a cancer survivor.  They have been through this before and are willing to share information, time and support to help my family get through our tough time.  My friend does my grocery shopping for me.  I cannot thank her enough for taking care of that annoying weekly chore.

I have TONS of people to thank.  The support from friends, family, co-workers, friends of friends is AMAZING.  I am stronger because I do not have to spend time at the grocery store, making dinner, or scrubbing toilets.  I can get my treatments, heal and recuperate and spend time with my family.  THANK YOU for giving me the ability to do that.

Chemo Treatment #2

I have been so busy since my last treatment preparing for Hudson’s first birthday that I was too exhausted to write until now.

Before my treatment, I had to meet with my doctor.  She told me my white blood count was quite low (only 2.5) but that they would treat me anyway because they were going to begin giving me Neulasta shots.  I had heard bad things about these shots from a few friends who needed them so I was not too happy about it.  Neulasta is given 24 hours after chemo to help your body produce more white blood cells than it can naturally.  It is administered in the back of your arm just under the skin like a flu shot.  It only burns for a second because it is so cold.  There is only one major side effect, intense bone pain!  Thankfully, taking Claritin helps keep away the pain.  Doctors are still not really sure why it works, but they tell all patients to take it anyway.  It seemed to help me so I will surely take another over-the-counter drug to avoid pain.  What’s another pill added to my cocktail really going to do to me at this point?  Frank and I counted and there was a day that I actually had over 20 drugs in my system at one time! 

Getting Neulasta makes this process a little more of a headache.  Since the shot must be given 24 hours after treatment, I need someone to drive me to get it.  I usually feel foggy and easily get carsick the day after.  It also needs to be administered by the nurses at my hospital (which is an hour away) to be covered by insurance.  I found this out after spending many hours on the phone with my case manager at my insurance company.  She tried hard to get the shots to my primary doctor so that I could get them only a few minutes from my house.  The process was all figured out until I got another call saying I would owe over $4000 for just 3 shots (that is with insurance, without it would be over $20,000!), because I was asking my prescription plan to ship them to someone else or some ridiculous reason similar to that.  I will need about 12 of these shots, so if you do the math, that is over $16,000 that I would owe.  YEA RIGHT!  Who has that kind of money just sitting around?  So we found a solution that is half as good.  There is a sister hospital I can go to and they can give me the shot and it will be covered by my insurance.  So, I only have to drive a half hour and the shot will cost nothing.  I think that is a pretty good answer to the problem.   

UPDATE: I heard from the doctor's office today and my white blood count is 5.  That is right in the normal range.  The Neulasta shot worked!  The plan to get the shot 1/2 hour closer to home will not work this time.  There will not be a doctor available in the afternoon to administer the shot, boo.  That means I need to head down to Methodist, an hour away, just for one silly shot.  Totally annoying, but worth it if I feel better and my side effects are shorter lived.   

During the treatment (March 28) the worst part this time was the disgusting metallic taste in my mouth while they administered the Adriamycin.  The medicine can cause mouth sores, so patients suck on ice to cut down on that possibility.  The only problem was the ice tasted like frozen metal.  GROSS!  I tried to get creative and mask the taste by sucking on Jolly Ranchers while sucking on the ice too.  That sort of worked, but I ended up getting three little sores a week later, so it was not the best option.  Next time I am taking Rita’s with me and eating it throughout the duration of the drug.  That way I get a different taste and coldness in my mouth all at the same time.  I may end up hating that flavor of water ice for the rest of my life due my brain linking smell and taste to memories, good or bad, but oh well.  There are worse things that could happen.

          My treatment was shorter this time as well.  Instead of getting home after 5:00pm we were back home around 3:30pm.  That was partly due to the fact that I had my blood work done two days before treatment at a local Quest.  That meant my doctor already had the results in her computer and was able to order all my drugs from the pharmacy before I even showed up!  That cut out at least an hour of lag time.  I also did not need as much wait time between drugs because I did not have reactions to them so they could administer them closer together.  Plus, no lessons, because I am now a “pro.”

          The side effects were not nearly as bad this time either.  I felt relatively normal Thursday night into Friday night.  I did take Xanax to help me sleep which was a good choice.  Last time the steroids woke me up so much I was over-tired and weak.  This time I got at least 8 hours each night.  I did not have the sweats from the steroids either.  I did however have several days of heart palpitations.  YUCK!  I hate that feeling.  I had to take Xanax a few times during the day as well to calm me down.  I may have been a little stressed about Hudson’s party too. 

          Saturday night was the worst.  Around dinner time I felt the body aches starting like last time only this time they were MUCH worse.  The pain always starts right at the hairline on the back of my neck and slowly works its way down my body until it hits my knees.  I was in so much pain I could not get comfortable.  I couldn’t lay or sit.  I took Xanax to calm myself down because crying wasn’t going to help anything.  Once I fell asleep I woke up every half-hour to hour wincing in pain because I probably moved a little in my sleep.  By 6am I was so over lying in bed, that I gave up.  I ripped all my clothes off as in a fit of rage and stood in the shower for nearly 40 minutes!  It was the only relief I had felt since 5pm the night before.  By breakfast time the pain was tolerable and by dinner time Sunday night it was gone.  But those overnight hours were shitty!  Thank goodness it was only one night.  I could not spend a whole weekend like that.  I am praying it does not get worse next time.

          I did not get as weak this time around either.  I am hopeful that is due to the Neulasta shot but we will not know until they test my blood again next week.  Overall I bounced back much quicker this time.  I am getting stronger and have actually held and carried Hudson around a few times over the past week!  I was able to enjoy his birthday party and all our family and friends who came to celebrate with us.  With each passing day I get closer to feeling more like myself again.  That is encouraging to me.  It makes me feel like all of this crap is going to be worth it. 

The warmer weather also helps to lift my spirits.  I cannot wait to buy some pansies at Produce Junction and fill my pots.  This is the first spring in our new house and I am really looking forward to enjoying our new yard and neighborhood as a family.  Frank and I got Hudson a Radio Flyer wagon as his birthday present.  He went for his first ride Sunday after dinner.  He loved it.  We walked around the block last night and met one of our neighbors.  I am ready to move past this cancer and begin our new life.  I want to set down solid roots, meet new people and build new relationships.  I want Huddy to find friends near us and set up play dates.  I am moving on with my life so this cancer needs to get OUTTA HERE!

         

Radiation, FINALLY!!!

For some reason I have had the hardest time getting motivated to write this entry.  I worked most of the week and was exhausted by the time I got home.  I also had a sick baby on my hands who spiked a fever early Friday and required me to leave work unexpectedly.  Parenthood!  Anyway...

I finally had my radiation treatment on Friday, March 15.  That was after one cancellation and two postponements. The machine I was supposed to have my treatment with was still out of commission so I was treated at a different facility at Jefferson.  Annoying!  The machine they had available was older and the treatment lasted longer than I expected.

My treatment was scheduled for 2pm.  Frank and I took advantage of the late appointment and went out to lunch beforehand.  Once again I was craving meat and was devastated to find out the sausage, tortellini meal I love was no longer on the menu.  What a let down!  I conceded and had sausage soup.  Also very delicious and helped satisfy my body's need for protein.

We got to the radiation center early and of course they were running behind.  Eventually my doctor came to get me and took me into an exam room to explain the process.  I was given one steroid pill, to help fight against a tumor flair and one, half-strength anti-nausea pill just in case.  (I hate taking that medicine because it is the cause of all my bowel issues.  When I mentioned my lack of bathroom trips to my nurse, and all the different over-the-counter drugs I had tried he responded by saying, "Yea, some people need dynamite "  Frank and I laughed out loud with that comment.  It was so true.  I finally drank some more liquid dynamite and the problem is somewhat under control.  Until the next round of chemo probably.)

When they took back I was surprised at how unimpressive the room was.  I expected it to look a lot more updated and full of highly advanced equipment.  The radiation machine was there with a table and tons of cabinets and an old desktop computer.  Some cameras on the ceiling and some other stuff that was disabled a long time ago.  The nurses helped me climb onto the carbon table and lay down into my "body mold" mattress thingy.  I stayed fully clothed the entire time, they just pulled shirt up so my stomach and back were exposed.

Before they could begin they had to take a mini CT scan to make sure they had everything lined up properly.  It would not be a good idea to just blindly start shooting a radioactive beam into the center of my body!  Once they were happy with everything, they started the radiation.  The machine rotated around the table six times.  It took about 20 minutes.  Afterwards they took another CT scan to check if I had moved (more on that in a minute) and then completed the treatment with six more rotations.  All together I had to lay still for an hour and 20 minutes.  The CD they put on for me to listen to had run out and I ended up just staring at the ceiling, grinding my teeth to the rhythm of the machine (which seems to happen often, based on the pain in some of my molars) using every ounce of my being not to FREAK out about the pain and tightness in EVERY muscle of my body. It is amazing how a person's will can help them stay calm in a stressful situation.    I was really uncomfortable by the end of the treatment but I knew I had to stay still because it would make for a better round of treatment.  All I wanted was to make sure this cancer was being killed, so I held it together.

Throughout the entire process I had to hold completely still.  When the treatment was over my nurses and doctor came in to help me off the table.  My shoulders and arms were so stiff and sore because they were above my head the entire time.  Both my legs had fallen asleep and they were throbbing.  My doctor told me I get the award for the least amount of movement during a treatment.  I had moved a little less than 1mm.  That is such a small amount that they did not have to readjust anything.  GO ME!  Then she chimed in with a laugh and said, "And I forgot to offer you a muscle relaxer!  Sorry about that but great work!"  I fake laughed at that due to my intense pain.  That probably would have helped.

After the treatment we went back to the exam room to discuss possible side effects (which all I had was some sleepiness) and scheduled a follow up appointment for five weeks later.  Then we were on our merry way.

The ride home was HORRIBLE!  We had to take 611 again because we were leaving at rush hour and couldn't take the main highway due to traffic.  That makes a typical 45 minute drive about an hour and a half.  Half way home I began to FREAK out.  My legs were throbbing, I was screaming, sweating and tugging at my clothes.  Every red light made it worse.  I was having a major panic attack brought on by the steroids.  All I wanted was a hot bath to help stop my leg pain.  When we got home I burst into tears (again from the drugs), ran upstairs and hopped into the bath.  Unfortunately my legs ached all night which made it difficult to sleep.  Thankfully when I woke up they felt much better as did my back.

The bone in my back is less sensitive to touch and I can lean against most chairs again.  I also have some more range of motion.  All signs that something is working to kill this cancer!  As painless and "easy" as this treatment was I am very glad I only had to go once. It is amazing what science and technology can do for us now.