So Far So Good

It is Friday morning after my 2nd round of Cocktail #2.  I am feeling a lot better than I would have at this same time with the first cocktail.  In fact, I was able to drag myself to the school to watch the I Love To Read Week parade, and several sweet little moments happened.  I had under-estimated the parking situation, so had to park far away and parallel.  I am not too shabby of a parallel parker, but under pressure with cars waiting, etc. I was thinking..."oh boy, here we go" but a dad had come forward and was directing the mom in front of me, then directed me and everyone behind me, stopped the other traffic trying to get through, etc. and just made it easy.  Then as I stepped out of the car, here comes an employee on a golf cart and offered me a ride up to the school.  I just thought....another little blessing, and that's what I told him on the drive.  He had no idea what my story was or how tired I was feeling, and he could have gone up to any of the other parents getting out, but that just worked out the way it was meant to, and I felt so happy to be there and reassured that all was ok.  The parade was so cute and the kids were just adorable all dressed up in outfits to go along with the books that their classes are reading.  And the best part.....walking up to the group and Jonathan seeing me and rushing over with a giant smile and a big hug.  Again...not really a big deal, but it was for this mom who feels like she has missed out on a lot of "moments" over the last few months.  So thankful that I didn't miss today.

My little Tom Sawyer!

3rd grade ready for the parade

Yesterday went better than last week.  This time my blood results before getting started were the lowest they have been.  I am not happy with this trend but I guess it is normal.  Without the Neulasta shot that I had been getting the day after the chemo, my white blood count took a really big hit.  And my red blood/hemoglobin numbers were down to their lowest point yet.  That really does help explain the fatigue.  The only other new thing I learned is that if my red blood numbers don't flatten out and/or begin to increase, and if I continue to have more fatigue, then we will have to look at a blood transfusion.  I didn't like the sound of that, but they seem to think it was no big deal.  Sounds like a big deal to me.  The PA said that some people with numbers as low as mine get them, but since I seem to be doing ok (and again, I have the luxury of resting a bunch throughout the day), then we will just wait and see.  

Otherwise, we talked about my big time congestion from last week (seemed to get better the last couple of days) with headache (like a sinus infection feel), little bit of neuropathy (coming and going), lots of fluid retention, new and different digestion issues, and my reaction to the Benadryl last time.  All of the first stuff was completely normal, and she gave me a little advice on things to change.  This time they gave me Ativan (relaxer) first, then slowed down the Benadryl drip and I was fine.  Thank goodness.  Also, they gave me the steroids again, and maybe I just missed it last week, but I wasn't expecting that.  Still, I am done with the oral steroids.  

My friend Karina and I passed the time catching up and just dealing with the different things going on there.  Chris often asks me what we talked about and I guess maybe I am more drugged than I realize, but I usually have a very hard time recalling much specific.  Most days I have many moments of frustration, embarrassment, fear or humor (depending on my mood) when I simply cannot recall the names of objects, a specific memory, a person's name, etc.  Again, I think this is normal but I really, really don't like it.  I hope and pray all of the cognitive ability I might have ever had comes back!!!

The only other related item is about a remote possibility of adding a new med to my cocktail.  The short version is basically:  Back when we consulted with Emory, a new medicine, Perjeta, was brought to our attention.  One trial had been released that did not completely match my current situation but it was close enough that the Emory doc said she would probably give it a try, but that insurance would probably present a problem.  Perjeta attacks the Her2 protein that feeds my particular kind of cancer (I believe I am saying this right).  That is the same thing that Herceptin is doing right now, but Perjeta attacks in a different way (so in my non-medical opinion it is another weapon to throw at the cancer).  Of course there are risks associated with the Perjeta, just like the Herceptin (heart failure/weakness...not to be taken too lightly).  Anyway, back when we returned from Yellowstone and the clock was ticking so quickly, we talked with our Piedmont doc about the new drug, but he wasn't willing to "go there" with the new drug since it was not approved for my situation specifically and because of the risks associated with it and the unknown factor given my situation.  We went with that.  Last week or the week before a new trial involving Perjeta was released and it is back in the news and we are second guessing the decision.  If we were going to take this drug it would need to be starting now or really, really soon in order to get in 8 weeks of doses before my chemo regimen ends.  The new trial still does not match my situation perfectly, and the closest speaks to the pre-op setting.  We are frustrated that we could have been given the Perjeta IF they had realized I was lymph node positive before my surgery.  But we have to deal in reality and trust that no one expected me to be lymph node positive based on valid tests and that for whatever reason things have happened the way they have.  

Chris went back to my Piedmont doctor last week and revisited the Perjeta issue.  Doc still says no based on the trials not fitting my exact circumstance, wanting to go with accepted and tested protocol and given the risks to me.  Chris asked him to please consult with MD Anderson about me (where my doc used to practice), and my doc agreed.  He just came back to us and said MD Anderson agrees with his decision.  This all sounds right I think, but Chris especially is struggling with accepting the idea of a new drug being out there that I cannot have.  He has asked for a new consultation with Emory, and as much as I dislike the idea of changing doctors and hospitals, we would do it if the Emory doc says yes.  We are just knocking at this door one more time, and we will trust and accept the final answer that comes....hopefully today.  We are trying to leave no stone unturned and to be our own best advocate.  I will admit that I personally have not been too stressed about this new "bump" or question.  But my dear husband has lost a lot of sleep over it, and I can see the look in his eyes and the stress on his face.  He is really focused on the long term and the life that we want to have together in old age, and I love him for that.  It is not easy to watch him try to mask relaxation, mainly because he is such a bad actor.  :)  I can see right through him.  Luckily, the kids can't, so that is good.  If you feel moved, please pray that the doctors take the time to think through this decision specific to me and what is in my best interest, and that we are doing the right thing, and for us to trust and accept the answers when they come.  Chris went over my "stats" as a refresher with my current doc, and that is always a sobering reminder of why we are going through all of this.  I tend to block these things, but the numbers discussed with my current plan are that I have a projected 85% survival rate at the 5 year mark.  The Perjeta would increase that to 87% or 88% I think.  I believe I also remember the idea of that statistic including EVERYONE, all ages, etc.  IF that is true then I'd like to believe that I am on the high side of those numbers, maybe higher??

So there is the update.  I am pooped and planning to stretch out and maybe try to read a book.  All of the fluid retention is bothering my vision, though, so maybe I'll just watch another episode of NCIS on my DVR.  I am glad to have discovered this show at the beginning of this cancer chapter.  There were so few programs that we regularly watch, and I tend to fixate on one show and watch all episodes, then find another show, etc.  And I really don't like most sit coms, anything gory or too scary or most reality TV, but I like a little tame drama.  Yes, you are probably thinking it so I'll go ahead and say it....I am sure my TV thinks I am 70 years old based on my viewing habits.  Soooo, it has been kind of perfect that I discovered a show that has been in production for a decade.  My DVR always has about 20 episodes waiting, making me a relatively happy camper.  From the girl who never turned on her TV in the middle of the day and might have been known to scoff at those who do, I have come a long way, mostly guilt free.  :)  Have a great weekend!

Schedule your screening tests friends!!  Do those self exams!  Don't procrastinate!

New Chemo Day 6

It's Tuesday morning and with the first kind of chemo, this day has typically been one of the worst.  But, so far this chemo has been quite different.  I keep trying to analyze the differences, but this is the first round of the new stuff, and I have learned that each round has its own little twist, so I will just share how I have been feeling since Thursday and we'll see how it is going forward.

First, I don't have to go back the day after the chemo to get the Neulasta shot!  Yay.   That is a slow shot that was never fun, so I am happy that is over.  Second, the pre meds are totally different, and do not include steroids anymore.  Big yay for that.  With the first chemo, I was getting nausea med plus steroids through the port before the chemo, and the steroids were given to extend the time that the nausea meds worked.  Then I had to follow that up with oral steroids for three days.  These helped contribute to the shakes (I think) and definitely affected my sleep.  That is all done!  Now, I have to rely on the nausea pills alone, and so far so good.  Third, the Magic Mouth Wash that I mentioned last time really is magic.  It made a big difference in the mouth sores the very same day I began using it.  By Friday they were either gone or a non issue.  Another very good thing.

You might remember that the first time I did the chemo the nurses ran the drugs slower than normal, so that they could check for any reactions.  We had to do that again on Thursday, but it seemed even slower than the first time.  Typically, I arrive at 9:30 (bloodwork 1st then I see the doc or PA) and am leaving by 1:00 or 1:30.  We were there for SIX hours on Thursday and my friend who drove me and I had to scramble to find someone else to pick up our kiddos from school, etc.  I felt terrible for her, but we didn't see many other options by the time we learned how much longer the whole thing would take.  Anyway, once again my red blood numbers were down to their lowest point yet, but apparently they won't take such a big hit with the new chemo.  They are not expected to bounce back, but we were told they shouldn't continue to drop and might begin to rebound as we go through chemo #2.  I was reminded that this is a big part of why I am so tired all the time.

With the new chemo, the pre meds were much "lighter" in my opinion.  I was given Tylenol, Pepcid, Ativan and Benadryl through the IV.  The nurse said they are to help my body accept the new chemo without any allergic reaction.  The funny thing was that the only drug I had any allergic reaction to all day long was the Benadryl.  As soon as it started I instantly said my head feels weird.  I could feel a spinning at the back of my head and then it got heavy and I immediately felt "off."  Then I recognized this as my feeling before I faint, and for those of you who have been reading since the beginning you know I was scared then because I do not like to faint (though I am prone to it).  Almost immediately I felt the weird tingling in my elbows and knees, felt the heat rush up from my chest to my face, then things started to go black from the far peripheral vision and move forward.  I really don't know what happened to the nurse (this was the first time that I felt a little unimpressed with a Piedmont nurse), but my friend was awesome and jumped out of her chair and grabbed my hand, knelt down and told me to start breathing deeply.  She counted and talked me through breathing in and out and the black finally began to recede.  That is such a strange and scary feeling if you have never felt a faint coming on.  I was so glad we were able to stop it and get calm again and move on.  Kudos to Kati for being fabulous and super helpful!  This Thursday I plan to make sure I have the Ativan (calming med) BEFORE the Benadryl, and also talk with the nurse about whether I can just take the Benadryl orally or if she has any other idea how to handle the Benadryl issue.

So the rest of the time there was fine, just really long.  I usually don't turn around and look at the bag of medicine, but I did many times on Thursday just to see if it was moving at all.  People came after us, then left, and we kept sitting there.  I think there were three different people in the chair near mine in the time we were there.  This Thursday they will run the chemo drugs at half speed (they were at quarter speed last Thursday, I believe), then next week we will be up to full speed.  I am not complaining, since I know this is the safest way to go and you never know when someone might have a bad reaction.  They tell me to watch for things like shortness of breath, itching/ticking in the throat, any kind of burning and of course rashes/hives.  So far so good.

Here is what the chemo drugs look like when the arrive.  The first time I saw them it was like, yikes.  Sort of scary looking.  They don't keep these just laying around.  The safety protocol requires two nurses to be present to hook up the drugs and verify that I am the correct patient for them.  

Here I am with R2 and fingers in the ice.  I only did this while one of the drugs ran, but it still felt like a long time.  I love this awesome blanket that my sweet friends from back in the playgroup days gave!  It kept me cozy and arm.

I also had my toes covered with ice (I ended up taking off the socks since I was afraid my toes might not be cold enough to help).  Also, I might not have mentioned it but it is very evident in this picture, I was retaining a ton of water leading into this chemo.  

Let's see, what else?  I am super thankful that I still have a few eye lashes left and quite a lot of eye brows.  Goodness knows I was blessed with an abundance of eyebrow hair!  Someone should dig out an old photo of my fabulous unibrow.  Anyway - I will NEVER complain about it again.  When the time comes for my hair to grow back, I will gratefully pluck, wax and do whatever I need to do in total silence going forward.  If I was really brave I would grow back the unibrow just to show that I can.  :)

Overall, this chemo seems better than the first.  I have not been nauseated, and nausea is simply the worst.  I have been more tired early on than I was with the first.  And this tired is different.  It feels worse than just sleepy tired....it feels more like I have a bad cold or maybe even the flu tired.  My mornings have started off ok, but then after lunch my head feels heavy, and my eyes want to close.  I think this is probably because there are also cold symptoms happening.  My nose was runny pretty consistently with the first chemo for the last few weeks, but this is worse.  My nose is REALLY runny, all day long, and my eyes are watering, and my throat is sore.  When I wake up in the morning my eyes are glued shut.  It is gross.  And the night sweats are more consistent.  But that is the only thing interrupting my sleep at this point, so it could be worse.  Poor Chris, though.  I barely ever remember much, but he describes me thrashing around to get out of the covers and later piling on the covers to warm up.  Oops.  I have had a few episodes of what I perceive to be neuropathy (numbness and tingling in my finger tips), but it hasn't lasted too long.  I also have had shooting pains in various places, but I don't know that I can write that off to chemo.  They told me to expect weird aches and pains, but that sometimes happened before cancer, so who knows?!?    

I felt good enough to attend soccer games this weekend, so that was great.  It took me an hour to comb out R2 after being out in the wind on Saturday.  My mother turned 70 on Saturday and my brother was out from TX, so we were able to get together and celebrate, so that was good, too.  Finally, Chris and I began the search for a plastic surgeon yesterday.  We scheduled the appointment with our regular surgeon for early November, but he would like us to have selected our reconstruction surgeon by that time.  There is a lot we need to educate ourselves on, and so that will be our job this week.  

I believe that is the update.  Thanks so much for reading and following along.  Your support is a constant encouragement to me, as well as Chris.  Have a great day!

      

Echocardiogram Today

This afternoon I have to go repeat the echocardiogram that I had before starting chemo.  You might remember that one of the scary possible side effects of one of the two drugs I have had in chemo cocktail #1 is heart damage.  Typically, any damage that occurs will show up later (I think a year or more later), but they still need to re-check my heart and make sure it remains healthy and unaffected. Obviously, this is my hope and prayer. I would like to say that this is also my "assumption" but I am scared to assume anything anymore, so I won't.  Also, as we prepare to start two new drugs on Thursday, one of which can also have a side effect of heart damage, they need to have a new baseline prior to administering this new drug as well.  Sigh.

The good news is that instead of having to go through all the needle fear and IV drama like last time, now I plan to stop by the Cancer Center on my way to Piedmont, have the cancer nurses access my port, then head over to Piedmont for the test, so at least that should be one less "thing" to worry about.  The test itself was no big deal...I had to lay down a certain way and the tech instructed me with different breathing (hold your breath, blow out, etc.) and then I could watch on a monitor and see a big picture of my heart (just like watching the ultrasound when expecting a baby) of which the tech then carefully measured the dimensions.  Then we had to repeat it with a contrast, which is why I need the IV.

Otherwise, last Wednesday turned out to be an okay day.  I had to keep fighting the nausea and was left feeling weak and dizzy.  But it was better than Tuesday and then the week improved a little day by day.  By the weekend I was feeling really pretty good other than the annoying cold symptoms that seemed to ramp up (I have given up trying to make sense of all the symptoms other than the nausea), and so I was constantly blowing my nose and wiping tears from my eyes that wouldn't stop watering. Again, not a big deal, just annoying.  I also developed the mouth sores that I had heard so much about and thought that I had avoided.  It just goes to show that with this cancer thing it is not safe to assume anything.  Right when I thought I was out of the woods with side effects for the first type of chemo, then BOOM, no I was wrong again.  These little sores popped up overnight, and are painful, and I am really hoping that they are all healed and gone by Thursday.  On Monday I called to ask why I was just now getting these mouth sores and if there was anything else I could do (I was already treating them with Orajel and Biotene mouth wash).  I was reminded that the effects of the chemo are cumulative, and so the effects build as you go, and that this was not surprising to them.  I have a new prescription for Magic Mouth Wash (love the name!) that has a combo of Maalox, Benadryl and some type of "caine" med (painkiller) that will help.  Yay.

Overall, I have enjoyed feeling "good" since Friday.  I attended soccer games on Saturday and Sunday and was pretty pumped to be able to attend the 5th grade Parent Social on Sunday afternoon.  I had to chuckle that I was able to get out and participate in a school function, which was a nice change, but that I had a big sore on my lip and I was meeting a bunch of people for the first time.  Ugh - not the impression I wanted to make, of course.  Under "normal" circumstances I might have just stayed home for that reason, but I thought...I have missed so much, and the reality is that one sore that is visible is the LEAST of my concerns, and the wig that is scratching my head is another thing that should not be high on my list of concerns, etc., etc.  So I got over myself and once we arrived I didn't think about any of those things...just enjoyed being out and about and meeting the parents of my daughter's friends and classmates.  I was exhausted when it was all said and done, but just glad to be able to attend.

So, I probably won't update again until after Thursday.  Since it will be new drugs, they will go slowly again (like the first time), checking for any allergic reactions along the way.  I plan to bring my new big, thick blanket to wrap up in while my fingers and toes are in the ice.  I am really, really hoping and praying that I can feel better with these new drugs, but I know not to get my hopes up.  We'll find out soon enough, I guess.  Until then, I leave you with a picture of a surprise I received last week.  Our family had never seen a giant fortune cookie before, and it made our day!  Have I mentioned what a blessing it is to be surrounded by such a thoughtful community of folks?!?  Truly humbling.

Dreaded Day 6

Quick update here.  If you are reading this you probably read my post on Monday where I was feeling some better.  Not sure what happened, but yesterday (Tuesday) was the WORST day so far in this whole thing as far as nausea.  Today, Wednesday, I am up and managed to drive Jonathan to school which was the first since this round of chemo.  So far today is way better than yesterday, so I am cautiously optimistic.  Taking is very slowly.

Usually I wake up in the night several times to use the bathroom, and often I am queasy and so I have my handy Saltines on my nightstand and I eat one or two crackers before laying back down.  I was so groggy on Monday night that I didn't eat anything in the night....not sure if that contributed or not.  For me,  having something IN my stomach seems to be a big helper.  Empty stomach/hunger seems to yield nausea.  Again, this is like pregnancy was for me.  And, I might have forgotten to mention, but I have been having night sweats.  I think that is part of the deal with chemo for many, but it has been very sporadic for me.  This last round has been more consistent with the sweats, and they are highly unpleasant, and sort of freak me out.

Anyway, yesterday morning was just a disaster.  I tried to get up and wake up a bit before waking up the kids.  Even when Chris is home and able to drive the kids to school, I hate to give up my "routine"  and so I prefer to go in and wake them up in my usual way (I have morning songs to sing to wake them up).  Well, without going into details I was unable to walk around and leave the bathroom vicinity yesterday, and so of course that is very upsetting to a SAHM, wherein this is part of your job....getting your children up and getting them ready for school.  The nausea med worked pretty well, but I had to keep taking it throughout the day, and I had to stay really still and was so bored out of my mind.  I know this sounds like complaining, and I promise I am not....just telling you the real deal.  Everyone has been there at some point....flu or surgery....whatever the case....where you are too weak to hold a book and too annoyed with the TV and too tired to keep a straight thought.  It totally stunk, and I was pathetic.  But enough of that.  Today is a NEW DAY.  I am sitting up and I am writing, so that is a huge improvement.  I believe the worst is BEHIND me.  I am moving FORWARD.  I am FINISHED with the yucky chemo that made me feel that way (though I remain THANKFUL for the good the chemo is doing even though it makes me feel like a stranger in my own body).  I truly do never forget to be thankful for the existence of chemo and the good that it does.

Thanks everyone for checking in.  It is all going to be okay and I look forward to the day I can look BACK on these days and just sigh.  Big hugs!

Celebrate-->Last Round of Cocktail #1 is DONE

Happy Monday Morning!  I want to get a quick update out while I am feeling up to it. I feel a disjointed writing coming on, so please forgive.

First...I am remembering to celebrate that my FOUR rounds of A/C (Adriamycin + Cytoxan) are finished!!  You will remember these have been every other week, and have basically knocked me flat for at least a week, but then have allowed me to improve and gradually feel better over the 2nd week. Last night I got on some of the breast cancer message boards (which I generally prefer to avoid) and was reading again about other peoples' experiences who have had my same course of treatment.  Overall, I think I have been pretty fortunate.  Many of those other women (some older but some not) have been more sick than I have been, so once again, I am THANKFUL.  I haven't had to progress beyond the original nausea medication that my oncologist prescribed, but many of these other women have had to take it to higher levels, and stay on those meds every day.  Yikes.  For those of you who do not know, I do not swallow pills well, unless they are the tiny little Claritins that I have to take, and my steroids are also really small.  But even things like Tylenol I have to break up and it is nasty.  Just one of those life skills that I somehow never acquired.  :(

Anyway, by almost all accounts, the nausea should be better with the new course that begins on October 2.    There is also a chance my hair will start growing back, so I am HOPEFUL for that.  The only new things on the horizon seem to be that I might be more physically sore for a few days after the new cocktail.  It sounds like a lot of people have muscle and joint soreness that can vary in degree for the first few days, but if that happens then hopefully Advil will help.  Also, this is the one where I will have my finger and toe nails dipped in ice while I am receiving the treatment in hopes of avoiding the nails separating from the nail bed.  I am not looking forward to that, but it still sounds better than losing nails.  The only other consistent side effect I have been told of is neuropathy in the extremities.  I believe this means tingling/pain and/or numbness in the fingers and feet/lower leg region.  We shall see.  Regardless...I will cross that bridge when I get there and deal with it one day at a time as has been our family mantra through this thing.

Back to the present, though....Round 4 went about like the others.  My friend Julie took me and took care of me.  I didn't fall asleep this time, but it was close.  My red blood count was down even lower, but I still got the treatment, so nothing to be too concerned with I guess.  That should also begin to rebound with the new cocktail.  Yay for the hope of a little more energy.  It does really stink to be so tired, and so bored, but not even have the energy to hold a book in my hand.  Back in Middle School in Germany I came down with Mono and this feeling reminds me of that.  I distinctly remember my head being too heavy for my neck to hold up.  That is how I feel often.

I think the many friends who are making food for my family have figured out that All American Comfort Foods are working best with my stomach.  THANK YOU so much!!  I am able to eat small portions of meat, carbs, soups, most fruits and some cooked veggies, and then supplement with lots of flavored water and prune juices so that my body can keep functioning sort of normally.  The rest of the family still enjoys yummy salads and all the veggies, but I learned the hard way to avoid those.  :/  This time my sense of taste doesn't seem quite as messed up as before, except for liquids.  Almost everything I drink is pretty gross.  But, the stronger the flavor the more tolerable, so I am able to drink my morning cup of coffee (not as good as I know it usually is, but at least it tastes like coffee), then I greatly dislike the prune juice, but that is not optional.  I try to shotgun it, but that is usually impossible because I think I have talked about how the chemo really slows down the digestive processes.  Well, usually this means that I take a couple of swigs of a drink and it feels "trapped" in my chest (right at the breast bone) for a few seconds or longer, and that is a really uncomfortable, strange feeling where I am left wondering which direction it is going to go.  For the tons of water that I am trying to drink, we have resorted to the Crystal Lite flavor packets that I had previously given up, due to all the artificial sweeteners, etc.  Chris has found the strongest flavors and those work best for me to get the water down.

So, I guess that is the latest.  It is Day 5 and I am feeling good enough to type, so that is good.  I am feeling more positive today than over the weekend.  Saturday was the roughest.  I am sure everyone is the same, but it is really hard to stay mentally strong when your body feels so weak.  Like everyone says, this is a roller coaster and we have to just ride it out.  Chris has been amazing.  I am always so apologetic when I get weepy, but he has never wavered and just lets me have my moment.  He doesn't try to solve anything, just tells me that this IS tough (yay for affirmation) but that we can do it, and it's ok to be where we are.  The kids are also hanging tough.  Jonathan just accepts what we tell him (as far as I can tell) and if it's possible, has become even more of a cuddler.  I cannot wait to see what type of man he will become.  He is so affectionate that I can only imagine how lucky some young lady will be to have him in her life.  Caroline is more of the internalizer (like her Daddy).  She is harder to read, and she doesn't just "come out with it" the way Jonathan and I do.  She is also very stoic (yes, I accept some responsibility on that, she IS the child of 2 first borns and she has a double does of first born syndrome).  But, I have learned the best times to talk to her (at bedtime) and have learned to ask a couple of questions then try (so hard!) to keep my mouth closed to let her SLOWLY open up and share some thoughts/questions.  These are special times together and she believes what we tell her (the TRUTH!) and though she hates that Mommy isn't 100%, she isn't angry, and she is marching along like a true little trooper.  By the way...she is in love with school again so I am once again so THANKFUL for that.  It is such a gift that she has so much excitement and newness going on outside of the family.  A welcome distraction.

I will end with a verse that I printed for our precious friends who are also fighting a cancer battle.  I think of them often and pray that a miracle of healing will occur in his body.  I printed a set of their "inspiration posters" for myself that I can see from my bed.  Not only does this remind me of them, but it reminds me of my HOPE and my FAITH.

But those who hope in the LORD will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  

Isaiah 40:31

Combo Post: Full Circle

Sorry for the lack of updates!  I "worked on" on a post several different times, but wasn't ready to publish, then a week had gone by and things had changed.  I went back and added the day of each paragraph so that everything below hopefully makes sense.  You can see the tone of my writing changes with how I am feeling.  This is not surprising in hindsight, but at the time, that was the main reason I didn't want to publish....I was aware of how negative I sounded and didn't really want that "message" being sent out.  :)

Saturday, 9/6, Day 3:  As expected, the 3rd round of chemo knocked me back quite a bit.  Chris took me and wanted to be there to talk to the doctor before the infusion.  We had a couple of questions about the prior blood tests, and then we knew they would look at my blood again before this latest chemo.  Some of my white and red blood count numbers were out of normal range, but all was good enough for me to proceed with the infusion.  However, I did get a little bit better understanding of my fatigue.  My red blood count was down even more than before, and I guess I had forgotten the little I had ever known from biology or health class or wherever I first learned about human body functions.  We were reminded that chemo affects your bone marrow (apparently one of the quickest multiplying cells in the body, like in the mouth and on the scalp), and weakens it.  Our red blood cells are produced in the bone marrow and so when my bone marrow is compromised then so is the red blood count, which leads to anemia, fatigue, paleness, etc.  The shot I get the day after chemo boosts my white blood cells, which I guess is overall more important, since that helps keep my immune system going right.  Anyway - we were glad to get a little better understanding, even if what I just typed isn't exactly regurgitated the right way.

My friend Maureen was there for the whole infusion and we had a good time catching up and I so appreciate having a good friend at hand to help and smile and distract and drive me home.  I was so tired, once again.  But basically, this round has been about like Round 2.  I don't feel terrible (it's not anything like the Shingles pain that was unbearable), I am not actually throwing up, but just walking around the house makes me queasy (really any bending or turning at all), and I'm feeling pretty miserable over the last couple of days.  I've been trying to think through how much is physical and how much is mental.  I know I have succumbed to a few hours of mental sadness, but really, I am convinced that between the constant shaking, not sleeping well (I am staying so hydrated that I am up several times in the night for potty breaks, plus the steroids affect my sleep), the need to stay "still" to avoid nausea and then this feeling of how heavy I feel...especially my head, that it's not all in my head.  At my most comfortable, I am surrounded by pillows, propped up, totally still.

My ever present companion, Coco.  She takes good care of me.

Sunday, 9/7, Day 4:  I keep reminding myself this is a season, but it feels like such a waste of perfectly good time.  However, I know I am doing the right thing in listening to my body, and if this "season" means that I am sitting around a lot, and watching a lot of TV, napping during the day, etc., then so be it.  As you can tell, I still get conflicted, but then I go back through the self talk and remind myself that I am not in charge and that I have to just do my best one day at a time.  I know there are many, probably most, people who go through chemo while holding down a job.  I have guilt that I am not doing more to maintain my old "normal" while I know many of those other cancer patients don't have a choice.  I thought about that this weekend while dragging myself to Jonathan's soccer game.  Once again we had a conflict and both kids played in different places at the exact same time.  I managed to get my parents to go with me for moral support and "just in case."  I consider watching my kids play their sport like my "job" in that I will push myself to attend if at all possible.  However, the other things I filled my day with in prior school years, like volunteering in the classroom, driving on field trips, taking on various roles at church and school, all have basically fallen by the wayside, and I am trying to not feel guilty for NOT pushing myself harder to maintain my old normal.  But in all honesty, it is really hard to get motivated to leave the house at all these days.  I guess the new (for however long, not sure) normal is that I am doing the bare minimum, and I need to find a way to be ok with that. 

Monday, 9/8, Day 5:  Today is my birthday, and I hadn't really given it much thought until today.  I woke up feeling a bit better, with a little more energy than so far this round, so that was good.  The kiddos presented their awesome handmade cards and pictures first thing this morning, and I love, loved that, as always.  Their little hearts will always be my treasure.  Two friends came over this morning and brought pastries, hot tea in real china to make the morning more special and a fabulous, unexpected present.  Another new friend surprised me with a lovely orchid on my doorstep.  So I was feeling good enough for a visit, and happy that the day was turning out to be so special (and I was able to avoid the thoughts that tried to creep in about how crummy it is to be dealing with chemo on my birthday and comparing this birthday to prior days, etc.).  We discussed the idea of going out to eat, but I really didn't feel quite that good, so we tossed around various ideas but for some unknown reason among all of the ideas, I thought pizza sounded good.  In fact, I sort of began to crave it after we talked about it.  Apparently that was a mistake though, because now I am paying the price.  I will have to finish this later, but suffice it to say that if you have ever had indigestion, then you know a bad case can feel like a heart attack.  Well I am there, with the addition of overall abdominal pain and turmoil.  Agghhh!!

Birthday flowers!!

Friends bearing birthday cake are the best!

Monday, 9/15, Day 12:  Somehow a whole week has gone by.  I forgot to mention above that Chris surprised me with a wonderful new handbag for my birthday.  I love it and hope that I can take good care of it....I have a bad track record with bags.  I guess I don't give them proper TLC or something because they never seem to last the way I think they should.  Maybe I have unfair expectations.

Anyway, last Monday night was terrible (pain and lack of sleep), then I got up feeling super nauseated.  The meds worked well, though, to get that under control, but Chris had to deal with the kids.  Tuesday was miserable with on and off nausea, and Wednesday was not much better, especially after lunch, and I still don't understand how Monday was so much better than the two days that followed.  A little birthday gift from above?!  To be clear, the "misery" was all tummy related.  The cold and flu symptoms seem worse the first few days after the chemo (though I seem to have a constant runny nose).  Anyway, I woke on Thursday and felt surprisingly better.  I say surprisingly because it was Day 8, and I "assumed" that I wouldn't pull out of the "Chemo Fog" until at least Day 10 since that is what happened last round.  But, I am also learning that nothing is really predictable.  So, for unknown reasons, Round 3 "trauma" lasted two days less than Round 2 (a gift I will happily receive!), though Days 6 and 7 were worse.  And just to be clear.....when I say "pulled out of it" it is hard to explain but very obvious to me.  I got pretty good at listening to my body when I had the babies, then better with the Shingles, and so even though I don't ever feel 100% anymore, I can tell when the shaking stops and the background queasy leaves and I just feel like the regular me minus a big dose of energy.

Since Thursday I have been able to catch up on laundry, get to the grocery store and cook meals, work around the house a bit and just feel better.  I know this doesn't sound exciting, but when you are unable to do the regular things, all of a sudden the "regular" things become exciting and you crave normalcy.  I still get pooped by 3:00, and I haven't yet gotten comfortable being in public with R2, but that is small compared to all of the other.  Final news....I ordered a hair "halo" just to try it out, along with several hats for the Fall/Winter.  My scalp is still sensitive (not as much as before) and wearing R2 is not my favorite thing.  Some days are better than others.  But this "halo" is interesting because it is open at the top and has hair around the outside of the circle only.  Obviously it is meant to be worn with a hat.  It is sort of freeing to wear it.  We are not really in hat season...at least not the kinds that I ordered, but I think this is something that might work for me.  I still plan to wear R2, but it's nice to have this little option to throw on for carpool, soccer games, etc.  It is way faster to deal with than R2, also, so I am liking that.  Who knew wig maintenance was about the same as hair maintenance?

Finally, let's celebrate a few "small" things.  I am trying to remember to do this and need to etch it in my brain for forever.  Yay that we are under 100 days until the last chemo!!  Two digits is way better than three digits!!  Just looks better.  And big YAY that I only have ONE MORE treatment of the AC (Adriamycin (the "red devil") + Cytoxin) aka Cocktail #1.  Of course I am dreading the final treatment, and even dreading the switch to Cocktail #2 because it is unknown, etc., but I am trusting that it will be better than Cocktail #1.  Sooooo, I am thankful for these things, and for the gift of a couple extra "good" days this round.  I am thankful for my family, friends, and all of the things easily taken for granted...our country's freedoms, food, shelter, sweet pets, green grass and blue skies.  Big love to you all!

Here is R2 with sunglasses accessorizing her, my preferred look.  This relates to a previous post discussing the "poof" factor of R2.  Picture is from first home game at Whitefield, 8/29, prior to 3rd round.    

Another fabulous and unexpected gift!  I'm telling you, I have the best friends ever!!  In fact, I just read something about surrounding yourself with people you admire, because you "become" the company you keep.  I am in good hands then, my friends!!

Round 3 Tomorrow

I have been feeling really quite well for Labor Day weekend and so far this week.  This stretch that I have been in was the longest that I will have between any two chemo treatments, if all goes according to schedule.  I have tried to enjoy this longer than normal series of good days.  With the good days from Round 1, I really felt like I bounced back to near 100%.  I *think* I had about my usual level of energy for a few days.  With this bounce back, I never regained that level of energy, which is a bit of a bummer.  But again, I can live with that.....I am just noting it. 

I have gathered my things together for tomorrow's Round 3, and that includes making sure that I have my little journal with questions and a summary of my symptoms over the last couple of weeks.  As I was reading through a cancer message board comparing the chemo I'm on now versus the one I am going to get next month, I kept seeing people refer to "flu-like symptoms" and I now see that that summarizes several of the things happening to me.  I knew I was exhausted and not really sore but often achy, and my nose has been running non stop since this whole things started, with more congestion first thing in the morning and then at night, sometimes with a sore throat, and then I see flu-like symptoms and I thought, yes, that sums it up.  The good news is the headaches from the first 10 days have gone away.  I am guessing they were related to the hair loss, but I will ask.  

Speaking of hair, it is basically all gone now.  There are a few stubborn ones left, that refuse to even be loose, so that looks sort of funny.  I am amazed that I no longer feel shock when I see myself in the mirror without anything on my head.  Even more amazing, my family doesn't seem to be bothered one way or the other.  And R2 and I are getting along.  Sort of.  I am still not thrilled with her, but I did figure out that if I accessorize her with my shades on my head like I used to, then it sort of holds down some of the "bounce" in the wig and makes it look/feel a little more natural to me.  With my natural hair, I liked my hair back off of my face some, but I don't like the feel of a headband, so my shades always worked without putting too much pressure on my head.  Maybe I just got used to seeing myself with them on my head...not sure.  Regardless, I feel a little better about walking around with R2 with the shades, so I'm going with that for now. 

Well, it's getting late and I need to get this wrapped up.  I am dreading tomorrow, because I have so enjoyed cooking dinner for the fam over the last several days, and just feeling good and being really "present" with the kids and Chris.  We played several games over the weekend and Jonathan killed us at Monopoly and Caroline is officially all set up with my old saxophone. She is so excited to learn to play it this year in band!  I caught up all the laundry, and the house is clean (okay, not the basement, but pretty much everything else).  I stocked us with lots of milk and basics, and I remain so humbled about the number of friends who want to bring dinners, snacks, desserts...you name it.  That is so very helpful on these days when it is all I can do to be awake.   Here are two pictures I happened to snap with recent treats that showed up on our doorstep.  Friends are an amazing treasure!

 

Special treat from Smallcakes!  Is it possible to gain weight on chemo?!?

Fresh flowers are a special treat!  Love all the purple in here!