Gratitute

Before I start the true reason behind this post, I'll update you on this week.  I recently posted on Tuesday that I was feeling fabulous... how quickly that can change.  I started feeling a little yucky on Wednesday, it got worse on Thursday, and by Friday I just gave into it.  It's so weird because I know that around those days my white blood count is at it's lowest and I'm supposed to feel tired, but after feeling so good on Tuesday, I didn't want to mentally "give in" and be sick.  I thought, especially since I didn't have a nasty cold this go around, that I'd kick the odds and feel fine.  Are you starting to notice a "pride" theme with me going on - yeah, it's gonna get beat out of me sooner or later.  Anyway, Wednesday I just felt "off" and became short with the kids.  Thursday I actually felt good in the morning and texted a sweet gal that was planning on bringing me dinner that I'd be fine (hmm, pride again).  She texted back and told me it was already in the works and to just accept it (ha ha) and I am SO glad she did because by the end of the day I was kind of a mess.  One of my dearest friends from the neighborhood came over that night and did my dishes and scolded me that I need to just give in, accept help, let myself have the bad days, and rest.  She was right of course, so on Friday (yesterday) I stayed in my sweats most of the day and rested.  It's hard to describe how I'm feeling on those days... I'm not necessarily tired, I try to nap but I can't always force myself to.  I feel more drained or wiped out - physically as well as emotionally.  My poor kids heard me scream and then cry in apology quite a bit over the past couple of days.  Hmmm, funny how I'm feeling exactly how they told me I would - you'd think I'd actually absorb that information, right?!?!  The good news is that I am feeling SO much better today and I think it will only go uphill from here till my next chemo treatment.  

So, on to gratitude... I have been so overwhelmed with this topic that I don't even know where to begin.  I know I will never be able to send thank you notes to everyone or truly express my gratitude but I'm completely inspired to pay it forward more often.  If you have done something for me and I haven't seemed as grateful as I should, please know that my family and I feel so blessed by your service - thank you!!  I have felt love from so many people in so many different ways that it is astounding and I am so inspired by it.  

I've had a couple of people ask me what has been the best thing that people have done for me/given me/said to me because they want to be able to do the same for other friends they know that are going through trials and my short answer is: Anything helps!  I've had people send flowers, cards, text messages, gifts, food... every single expression of love no matter how big or small is completely appreciated.  My visiting teachers have really been proactive in setting up meals and organizing help (and one of them listened to me cry; always helpful).  It's been nice to have them "in charge" of everything.  A lot of people have offered to drive my kids places.  My son's school class recently sent me treats and cards they'd all made and it was so touching.  I've received multiple cards from a mother of one of Matt's high school girlfriends.  She doesn't even know me and it's been 20+ years since Matt has seen her, but she went through cancer a while back and is spreading the love.  If you have a loved one that is going through something similar, and want more concrete ideas, here are the things I received and loved: 

• One of the first "gifts" given to me was by a complete stranger.  My sister posted on her wall that I was going through cancer.  I was reading through the comments and one of her friends asked for my name so she could pray specifically for me.  I totally cried over that one.  I've had many messages that people are thinking of me, praying for me, and putting my name on temple rolls... every positive thought is appreciated.
• A "dammit doll" (it has a saying similar to this one on the link but my stuffed animal was an adorable sock monkey)  to slam around when I'm angry; totally made me laugh.
• Pajamas in a soft knit that button up the front (I only had t-shirts tops that I wore to bed so these jammies were perfect post-surgery when it was hard to move my arms).  Along that same line, I received some comfy and cute "sweat" bottoms to relax in.
• Sweet-tarts, lemon gum.  Normally I'm not a fan, but they were the only thing I felt like eating the day after my first chemo (they say sour things are great for getting the metallic taste out of chemo mouth).
• Tetracaine lollipops, (I didn't even know about these - you can get them from the pharmacy without a prescription and they're good for chemo mouth sores, teething kids, and tonsillectomy patients).  I also liked ginger tea, peppermint tea, and dry-mouth wash.
• One friend gave me a Willow Tree statue; there was a time I remember being down and glancing at that statue reminded me to be courageous.
• One of the things I've been most grateful for is that Matt splurged and got me a housekeeper.  If you know someone going through a health issue that can't fit that into their budget, that may be a gift you can go in on with some friends/neighbors.
• A neighbor texted me and said that she had a family party and they had a ton of soup left over.  Another time, the YM/YW had a dinner and I was brought the leftovers from that as well.  It was such a great way for me to accept a lovely meal and a kind thought without feeling like someone was bending over backward for me.  I've also loved freezer meals for that same reason.  Gosh, this post is really showing how I struggle with pride/being served - sheesh!
• A gal in my ward takes my two youngest every Thursday after school to play with her kids.  Setting up a weekly, set playdate was wonderful!
• I've been given a lot of hats but I appreciate every single one, especially the ones handmade with love and also these these hat liners that I can wear to bed and/or under all my other "cute" hats.
• My ward did an undercover hat/book "shower" for me.  It wasn't in person (that would have been too hard emotionally) but my sweet neighbor organized it and surprised me with a few rounds of gifts. It was fun to see the books and journals others chose, the cute hats and pampering items they picked out, and most importantly to read their words of support and love.
• Comfort items like blankets, fuzzy socks, water bottles, lotion.
• Candy, gum, homemade goodies, and most importantly dinner for the family.

Having given you all these ideas to use if others in your future get a similar diagnosis, don't feel like you need to spend any money to show your love!  Any note of love or gift of service you'll offer them will be truly appreciated!!!

There are a lot of things floating around the Internet and Facebook about the right and wrong things to say to people with cancer (and going through any hardship really) and I want to give a small rebuttal to all the things they say.  I appreciate any well meaning thing shared with me because I know it comes from a place of love and concern and I know anyone who cares for me means well (and I know I've probably also said some stupid, thoughtless stuff in the past).  Does this mean that I haven't heard people say things that I could construe as demeaning, thoughtless or just plain stupid?  Of course not - I can think of a few weirdo things that were done or said!  However, I know that anything my loved ones say to me or offer is an expression of their affection and interest in me and if I as the receiver choose to be offended, that's my problem; I'm choosing to focus on their kind intent.  I've had a lot of people that when talking to me about problems say, "I'm sorry, that's nothing compared to what you're going through" or they'll say "I'm sorry I'm talking about myself when you're going through this."  BUT it isn't 'nothing' because we are all dealing with problems in life and I don't want to talk about me nonstop - I want to live my life and hear about you and your struggles too!  It's OK to talk about those things with me!!  Maybe this is just how I feel, and maybe you should listen to those FB posts about what not to say to someone in a trial (it's always good to improve your etiquette) but also remember that when you truly love and care about someone and try to show it, they'll know your heart. :) 

Bald is Beautiful (as long as you smile!)

Chemo - Round 2 of 8!   I realized that I didn't update this blog after my chemo treatment last Thursday - sorry to all who were concerned.  (Seriously Mom, I know I've told you in person but maybe saying it in public will reassure you... You are the #1 person that can call, even if I'm feeling sick or sleeping!)  This round of chemo was actually easier on my tummy than last time.  I think it may have had to do with the fact that I was actually taking all my nausea pills proactively.  The only side effect of the nausea pills was that they knocked me out more.  I slept for most of the weekend; sleep for 3-4 hours, awake for 1-2 hours, then back to bed type of scenario.  My bones were pretty achy as well, especially the back of my neck and hips.  However, despite all that, all is good.  Monday I was feeling good enough to venture out with the kids to Boondocks.  I spent most of the time sitting in a booth listening to an audio book, but it was nice to get out and about.  Today (Tuesday) I'm feeling almost 100% - yea!!

Now, to the hair... it's gone!!  Matt helped me to buzz it on Sunday morning but it still felt really tender with 1/4 inch to push against my scalp so I totally shaved the rest of it off today.  It's been driving me crazy since the middle of the week and it feels so much better to have it gone.  No more hair all over my pillow or in my mouth when I wake up, no more worrying about it being all over my clothes or in everyone's food; hooray!  This picture doesn't show it very well, but there are patches of completely bald spots all over my head.  Some spots are the size of a dime while others are about 3" across.  I'm not gonna lie, the idea of "really" shaving wasn't as easy as I expected.  I started to cry Saturday night and wanted Matt to shave it right then.  He wisely and firmly suggested that we do it in the morning when I wasn't tired and it was a fabulous idea.  I did shed some tears, but there wasn't any sobbing (like the time, at 21 years old, when I cut my almost waist length hair to my chin and thought it was the end of the world - ahh, how I love the perspective that comes with age!).  

I am constantly telling my children, especially my daughter, that beauty comes from the inside and everyone is beautiful when they smile.  I do need to remind myself of that often, more especially now, but it is something that I truly believe.  It doesn't hurt matters that I have the most supportive, loving, and complimentary husband on the planet.  About a month or so ago, I was browsing some cancer forums and there were a lot of women that were worried about how their husbands would receive their loss of hair and/or the changes that come with the mastectomy.  It broke my heart to know that's an additional concern with some women going through this ordeal.  I know without a doubt that Matt loves me unconditionally.  He is my biggest cheerleader and is so amazing at letting me know it!  When I buzzed my hair, Matt gushed about how cool it was and how he seriously thought I should rock the look sans cancer.  Before I went to sacrament meeting on Sunday (my first outing post-buzz) he told me how gorgeous I looked and reminded me that confidence will help me "pull off" anything - such good advice in any circumstance.  Even when there are times where I know he's shoveling a bunch of over-the-top flattery in my direction, I'll take it!  I'm blessed to have that guy in my life.  Now, truth be told, not everyone in the family is on board with the baldness... I'm still working on getting 2 of my kids to not be afraid/weirded out by the lack of hair.  I know that it's a scary reminder of the battle I'm fighting, but I think that they'll come around with time and by seeing that I'm handling the treatments well.  And on that note, I'm off to go hang out with those super cute kiddos.

And so it begins...

My adorable sister Jackie drove an hour to my house tonight to bring our family a yummy dinner and bring me a gift pre-chemo.  Jackie is the sister who embroidered all the t-shirts for our family Christmas party and when she discovered that I couldn't wear my "Team Heidi" shirt to treatment because it covered my port, she promptly ran to the store and bought me some hoodies to wear.  I had no idea she was doing this but I should have known, this is Jackie after all - that girl serves others day and night.  Jackie's the youngest in our family of seven kids and I think she's an example to all of us.

 

While Jackie was here she noticed something on my shoulder and grabbed it off.  She looked at it and was puzzled at what it was so I took a look as well.  At first we both thought it was dog hair but since Maggie has passed we don't have any around.  We both looked at it for a while and then "lightbulb!"  It was MY hair... duh - we had a pretty good laugh about how clueless we were.  I've heard from other cancer patients that when the hair begins falling out their follicles feel kind of like when your hair has been in a ponytail all day and then let it out; tender and itchy.  When I was washing my hair this morning, I did notice that my scalp felt that way, but I didn't think twice about it.  Now I know why!  Of course, after Jackie left I put the kids to bed and when straight to the bathroom to comb my hair.  Yup, it's definitely falling out.  I watched "Home Alone" with the little boys last weekend so here's my best Macaulay Culkin impression about this new advancement.  Seriously though, I'm okay with it all.  My options are to be bald or to die, not a hard choice really.  (Ok, so that sounded extreme and morbid but I meant it to be light hearted... black humor maybe??)

I don't think I'll shave until either the weekend (it's Owen's birthday on Friday and I don't want to take away from that), or until the hair starts clumping out more.  I'll keep you posted.  Here's some info I got from the internet just in case you're interested about why hair falls out and/or thins during chemo.  I'll be getting all the drugs below except Adrucil so there's no chance my hair will stay in; triple whammy!

Hair loss occurs because chemotherapy targets all rapidly dividing cells—healthy cells as well as cancer cells. Hair follicles, the structures in the skin filled with tiny blood vessels that make hair, are some of the fastest-growing cells in the body. If you're not in cancer treatment, your hair follicles divide every 23 to 72 hours. But as the chemo does its work against cancer cells, it also destroys hair cells. Within a few weeks of starting chemo, you may lose some or all of your hair.

The extent of hair loss depends on which drugs or other treatments are used, and for how long. The various classes of chemotherapy drugs all produce different reactions.

The timing of your treatments will also affect hair loss. Some types of chemotherapy are given weekly and in small doses, and this minimizes hair loss. Other treatments are scheduled every three to four weeks in higher doses, and may be more likely to cause more hair loss.

For example:

• The breast cancer drug Cytoxan (cyclophosphamide) causes hair thinning but not complete hair loss.
• Adrucil (fluorouracil) does not cause hair loss.
• Adriamycin (doxorubicin) causes hair to thin during the first three weeks of treatment, then all the hair falls out.
• With Taxol (paclitaxel), there is very sudden hair loss; you will likely wake up one morning with your hair on your pillow.

To prepare emotionally for the change, most patients have their hair cut before they start chemotherapy. Others choose to have their heads shaved. Just be assured it will grow back, often within a few weeks of completing chemotherapy.

Mid-Treatment Ramblings

I met with my oncologist Dr. S on Thursday to see how everything is progressing.  He says that depending on how things go with my treatment and blood work that these mid-chemo appointments could be temporary.  They took my blood and it looks as expected, especially with my white blood counts being low.  My red blood counts are also low (anemia is a side effect of that, but I haven't noticed it yet).

I am supposed to stay away from germs as much as possible 7-10ish days after chemo because that's when white blood count is lowest I'm very susceptible to getting sick.  Apparently I wasn't very good at that because I am home from the last half of church, writing this with a phlegmy cough and sore throat.  Our family is generally being great about germ prevention.  All the kids try to wash their hands as soon as they get home from school and I've got some Purell on the countertop that I've seen them use from time to time as well.  I did however find what I think was my downfall... the water bottle pictured here.  This is from the hospital and that bendy straw is perfect for when you're laying in bed post surgery.  I've also found it's the perfect draw for bored fingers whenever they're nearby.  The first time I noticed the attraction was with my oldest (sorry, I'm throwing you under the bus Bradley!) and we were in the car. As he was talking, he absent-mindedly reached over and started playing with the straw.  Over the next couple of days, I realized that 2 of my other kids did it as they came to chat with me.  The water bottle was nearby, they'd look in my eyes to speak, and their fingers would magically connect with the straw that I put into my mouth multiple times a day.  I guess it's an irresistible urge and I need to put my more boring water bottles to good use.  

Dr. S asked how I was handling the side effects and I told him I felt better than I'd expected and only had to take my anti-nauseous pills twice.  I thought he'd be be so impressed but instead he said, "You only took them twice?! Be liberal with those pills - they aren't habit forming and there's no need for you to try to muscle through the nausea."  This was the best thing for me to hear because I do have a tendency to try to be strong and then I have the inevitable crash.  Ah, there's my pride getting in the way again! 

Speaking of nausea, I feel so blessed with the supplementary medicine I'm receiving during treatment to lesson all the side effects that accompany chemo drugs.  The only experiences I've had previously with cancer is seeing my Grandmother in her hospital bed a few days before she passed, and seeing cancer portrayed on movies or television - neither experience led me to believe it would be an easy journey.  I have a few thoughts about all that now... I am so grateful for modern medicine - my oncologist told me that in just the past 5 years, treatment for breast cancer has seen unbelievable advances.  I'm thankful for the doctors and researchers that work to find cures, and also for patients that were willing to try investigational medications that have now become the standard.  I feel incredibly blessed by all their struggles that have lessoned mine.  Also, time for a reality check here - movies and television always try to portray things in the most dramatic way possible... it seems like no pregnant lady in the land of cinema goes through labor with an epidural; what's up with that?!  No drama, I guess.  My favorite show on television is "Parenthood" and one of the main characters struggled with breast cancer a couple years ago.  She was in so much pain and suffering and I guess that's how I expected to feel.  Maybe that's why I only took 2 of my nausea pills - I thought I was feeling great comparatively!  I know my chemo effects are compounding and will get worse over the course of treatment, however it's good to remember that things we see on the screen are usually a worst case scenario.  Which actually brings me right back around to being grateful and amazed by all the cancer patients in years past.  I know that some of them did have to endure those worst case scenarios of treatment and if treatment doesn't work, even with today's fabulous medicine, I know how devastating this disease can be.  Ok, enough talking in circles, I'm starting to babble.


All this brings me to my thoughts about figuring out a way to manage a good mix of resting and living my life.  Most of the time I feel normal with the exception that I need to take 1-2 (ok, sometimes I've taken 3!) short naps to keep my energy up.  This past week with the weather being so warm and beautiful, I was itching to get outside and work in the yard.  Those of you who enjoy yard work will know that sometimes there is no better therapy than getting sweaty and dirty while working outside.  I raked the entire backyard and it was so rejuvenating!  Of course, on the other hand, I've had a couple of days (especially since I've gotten sick) that I just relax most of the day.  I guess it all balances out. 

Wow, this entry was longer than I expected, sorry I'm rambling on.  Writing all this stuff down is also good therapy for me (although harder in some ways than raking the leaves, lol!)  I know my family reads this blog and I've had many friends comment that they do as well, but I think even if nobody cared, I'd still write down my thoughts.  Doing so helps me work through things mentally & emotionally and we all know that's what this journaling stuff is all about (or, it's all about that bass... your choice).  

Love you all, have a great week!  

Oh, PS - Chemo round 2 is on Thursday and after the second treatment is when most people start to lose their hair.  That will be an exciting post to look forward to! :-D

The Rollercoaster and The Expansion!

Today and yesterday were fabulous (physical) days for me!!  I'm feeling strong and have the urge to complete everything on my to-do list, however, that is causing it's own issues.  I spent the day yesterday busting out all the laundry, trying to get the house in order, and cheering on Bradley in hockey.  (The Davis High hockey team made it to the playoffs - last year they lost every game, so this was a big deal!)  I was gung-ho all day long and you can see where this is heading, right?  Yes, I crashed that night!  It didn't help matters that my 3 younger kids were calling nonstop while I was at the game, so much so that I needed to call my sweet neighbor to walk over and check on things, sheesh!)  Anyway, I got home feeling deflated.  I was not only tired, but embarrassed (calling the neighbor to make sure my kids weren't killing each other was the worst, but the cherry on top was that a sweet friend dropped off dinner while I was out and my kids couldn't remember who it was so now I can't thank them.  Seriously, I swear 2 of my 4 kids have that disorder where you can't remember names and/or faces, but that's a whole other story).  I also (stupidly) started browsing the internet about more cancer info while I was laying in bed and freaked myself out, I started stressing about our insurance, and then it all snowballed to me crying about everything under the sun and getting mad at poor Matt for who knows what.  Why do I do this?!?!  Just go to sleep!!!  I am having a rough time getting used to this roller coaster.  It's so weird to try to constantly balance my physical, mental and emotional self, knowing that in the next day or two I'll supposedly be feeling crappy again.  This is definitely a good learning experience for me in so many ways... I'm having a hard time succinclty putting my feelings into words on the page, I wish I could express myself as well as Lauren does with her writing but it's much easier for me to jabber on about the silly details.  So, having said that, here is the run down on the silly details of my latest doctor appointment:

Matt and I went to a plastic surgery appointment today.  This is my plastic surgeon Dr. R whom I love (it's a legitimate diagnosis to have a crush on your doctor, right Cassie?! - totally kidding - inside joke) and his cute nurse Tobi.  They are so much fun and Matt and I are really starting to enjoy going to these appointments... we think in a non-cancer environment we'd have a lot of fun going to dinner or hanging out with these guys.  These visits are so different from the ones with my other doctors and it's so nice to have some lighthearted, fun things mixed in with the serious.

The reason for my visit to Dr. R today was to get more fluid put in my expanders.  The fluid is added slowly so that your skin and muscles have time to stretch and heal (remember, the expanders were placed under the muscle).  The expanders feel hard and are kind of uncomfortable - I can't sleep on my side very well, I'm still working on my posture, and the shape of them is very different than what my permanent implants are going to be so they look kind of weird comparatively.  There isn't any sensation on my skin because of the nerve damage caused by removing the breast tissue, but my skin in-between the expanders is alternately numb and tingly. I do feel "phantom pain" sometimes - it's a normal, but weird psychological thing where you think you can feel pain at the location of your tumor, even though all that tissue was removed.  Despite all that, it's nice to have a touch of femininity while I'm going through all the other treatments - I think it makes the emotions of the mastectomy easier to handle. 

The filling process was really interesting:  Each one of my expanders has a port on the front that has a bit of metal in it.  The Dr took a magnet to my chest to find out where that port was and marked it with a sharpie.  He then cleaned the area, stuck a needle into the port, and injected the fluid inside.  It didn't hurt, but it was uncomfortable to feel the skin and muscle stretch.  He only put about 50 ml in (which is about 4 Tbsp) and we'll add or take away fluid every few weeks till we get to where I feel comfortable.  I guess that's one benefit of having reconstruction as opposed to regular implants - I can "try before I buy" and figure out what size I what to be!  When I get radiation, they may have to drain the expanders a lot so they can angle the beams for the best possible results, but then my skin and muscles will already have the stretching done.  Radiation can be a doozy on your skin so it can be a lot harder and/or impossible to stretch it afterwards (in fact, skin grafts will be a definite possibility at that time).  Anyway, easy appointment today and I'm feeling good.  Let me know if you have any questions about my treatment that I'm forgetting to answer... I'm obviously not shy about sharing. ;-)