Round 5 is in the books

Thankfully my numbers were high enough last Friday to go in for my infusion.  Not going to lie, I was more nervous for that infusion than the first.  My mind would not turn off; all the "what if" questions, specifically, what if this round is worse than all the others because my body had an extra week to heal...I was sweating out of fear, not the chemopause induced hot flashes I am currently suffering from.  

My hair is pretty much gone now (I will try to get a good picture up close of my head for a later post).  The saying, "gray is stubborn," must have came from a patient going through chemo because literally every hair on my body has fallen off but the gray ones.  If you look close you can see a few sticking up in the image of Scotty and I.  Those damn gray hairs are at least three times the length of the few brown stragglers clinging on to my poor scalp for dear life.  People ask me when they see my head why I don't just shave it but I get a sick pleasure seeing how long those stupid gray hairs are going to get.

In the grand scheme of things this round has been pretty similar to the last few.  The only thing that really seems worse is the stomach cramps.  I described the pain to my kids as if someone was taking my insides and putting them through a meat grinder. THE PAIN IS RELENTLESS.  I have tried everything to make it go away and nothing works.  Out of desperation I took extra nausea pills to try to discourage it but that didn't do a thing. 

Monday was really rough.  As I think back I can't even pinpoint when it started but it slowly raveled out of control once I got the kids from school.  My kids were so great.  I told them that I wasn't feeling good and had to go lay down.  All three of them stayed quiet, helped each other with homework, got their own snacks, and then stayed upstairs in the girls room so I could rest.  When I finally woke up, two hours later, the kids helped me make dinner.  I haven't felt that bad since first round.  

Today is exactly one week from round 5 and unfortunately the diarrhea has set in.   Actually I am so much happier to have this side effect than vomiting.  I hate to vomit.  The only thing that is just miserable with this is that I am starving.  Food still continues to taste disgusting and spending extra time in the bathroom makes my body even hungrier.  Those of you wondering I am still gaining weight, insert emoji of mind being blown up.  I do not get it.  

During this week Brody also graduated out of Cub Scouts.  I am so proud of this kid for not slacking on Scouting and a huge thanks to my mom for keeping him on track.  In the mom department I have been MIA since cancer took over my life and she is hands down the best mom and grandma ever.  I could not have gotten through this without her.  She is also Brody's leader in Weblos and created the coolest ceremony and arrow of light award.  

One thing I could do was make a sweet treat for the Brody.  My mom helped me but we whipped up these arrow cupcakes in double chocolate, his favorite.

I should apologize for not posting sooner.  In my pursuit of being honest on this blog I will say that most days I figure there are about 8 people reading this and almost all of them are related to me.  If I feel too tired to update it I rationalize they already know how I am and it's no big deal.  Then two days ago a dear friend came by to visit from Oregon and told me she was concerned this had been a really rough round because I had not updated my blog...oops....I will be more diligent about updating moving forward.  For those of you reading this I appreciate that you take the time to pull it up and are concerned enough about me to want to know how I am doing.  Thank you!

Bad News

Well I just got the call saying chemo is off.  The pharmacist refused to mix my medicines because of how low my platelets, red and white blood counts are.  I'm frustrated.  It takes me a day to mentally prepare for these infusions and to not be able to have it is depressing.  

They suggest resting and eating healthy between now and next Thursday.  Ironically that is all I do these days and it doesn't seem to be helping.  

Now I wait.  Next Thursday they will retest my blood and if the counts are good I can do round 5 next Friday.  If the numbers look too low still we wait another week and retest again on Thursday.  This will continue until my body has regenerated enough to be in a safe range to handle the medicine.  

I am praying that by next week my numbers will be high enough.  

Fingers Crossed

It's early, or late, depending on your perspective.  On the morning of round 5 for me it is early.  I have been attempting to sleep for hours but decided to give it up and jump on here to clear my head.  You would think that after doing this four times I would be less anxious, yet each time I am at this same crossroad, of fear and anticipation.  Fear because I know how bad I am going to feel after getting the medicine and anticipation because I know it is the best chance of giving me a very long life.  It is an odd mix of emotions that I think really only someone that has gone through this can honestly understand.  I know before this I had nothing to use as perspective and never imagined how strong people that get cancer have to be.  It's a little bit taxing to say the least.

As with every round I have my blood drawn 24 hours prior to the infusion so that was done yesterday.  I really felt pretty good this time around.  The majority of my bruising seemed to come early in cycle four, there were less nose bleeds, and I didn't notice any random additional bleeding.  Truthfully I thought my blood work was going to come back better than last time based on that.  Regrettably it came back worse. 

Last time my platelets were at 115 which was low but not terrible.  If the number gets to 70 or below we have to post pone chemo to let my body recover longer.  Essentially it means my bone marrow isn't able to produce enough healthy blood cells to keep my body in a safe zone.  My number yesterday was 71...not good.  On top of that my red and white blood counts are not good either.  It seems that my anemia is getting worse even with all the different ways I have tried to bolster them through diet.  Not gonna lie it is a little bit depressing. 

In my head I know that I have no control over the numbers I am reading on my blood tests but I feel like I am some how letting myself down.  I try to give my body pep talks, it is the competitive athlete in me I think and the knowledge that our mind is our most powerful muscle, but I am frustrated that mine is too weak to force the numbers higher.  Insert a long deep sigh here.

Of course as I washing dishes after dinner a pair of tongs snapped and cut the middle of my palm.  Seriously this cut was minuscule but bleed like I severed an artery.  Ah-Ha moment, my platelets have literally given up the fight so to get it to stop bleeding I had to crazy glue the skin back together.

This week I also met with my oncologist regarding the random "spells" I have had and swelling.  After a lengthy discussion we both decided it was best for us to not change or add anything to my regiment.  From her perspective a water pill is not going to remove the problem because it is a side effect from one of my chemo drugs.  I might get a small reduction in the amount of swelling but it wouldn't go back to normal.  Another option was to decrease the drug causing the swelling but it is the most effective one I am on at killing cancer cells.  If we were decrease it so close to being done there would be a slightly higher chance at reoccuracne.   Ultimately it was my decision and I chose to not change anything.  This was a hard decision to make because I had to willing say, "yes please give me cankles, a slight limp, no pants that fit but cropped yoga pants, and stretch out my favorite flip flops to never fit again."  On the opposite side I am increasing my chance at life.  It sucks but it is an easy(ish) decision to make.

This post might sound like I am in a deep dark place, I'm not.  What I have come to realize is that you have to just accept this, all of it.  There is no good physical side effect from getting cancer.  I know that I am going to feel awful.  It is hard, but I am accepting the new level of energy I have...none.  Though it is hard I am embracing my continuing transformation into my father (balding head, gray hair that keeps growing and won't lay down, legs that swell just like his, and no I don't want to borrow your compression socks dad).  The fact that I wake up with a new bruise somewhere and stiff painful leg muscles like an elderly woman is anticipated.  It is getting harder and harder to remember how easy life was four months ago, and life really was. 

One thing cancer does do is remind you how precious life is.  I look at my family and am more thankful than I ever knew possible.  In fact the other day I was talking to a friend that lost his wife to cancer.  We were discussing how you gain an elevated level of knowledge in so many areas of life when you and your spouse go through this.  I told him I remember meeting Scott and falling in love with him thinking, there is no way I could love that man more than I do this day.  Then we got married and I thought, there is never going to be a day I could love him more than this day.  Then we got pregnant and the day I held Brody in my arms I looked at Scott and thought, there is no way I could ever love this man more than I do today for this precious gift he helped give to me.  Then we had Reyna and Emery and I thought, okay this is it, my love could not grow more than this for this man.  Then I got cancer and I watched him support me and I knew.  This was the moment.  This was the day that I knew I could never ever love him deeper than I did.  Cancer gave me that.  So in some weird way I am thankful for this stupid, painful, horrible disease. 

Twilight Zone

Often times really good things are followed or preceded by really bad things, at least in my experience.  Below is a bit of a story to set the stage for the newest side effects I have experienced so bare with me! 

I haven't said anything on here because I think I was afraid it would jinx it and some how things would fall through...but we bought a house in Ripon finally.  It actually closed a month or so ago but we are doing some work on the house before we fully move in.  Plus my mom would do pretty much anything to keep me with her till I finish up the bad chemo and is overjoyed at the prospect of a renovation project to prolong our stay.  Below are a few pictures of the demolition.

We are redoing the kitchen, ripped out all the flooring, adding tile and new carpet, painting, adding new light fixtures and fans, plus putting in a pool.  The flooring was a must because the previous owners had lots of animals that had accidents inside.  In the kitchen we are resurfacing cabinets, adding a double oven, moving the microwave, adding quartz counters, a larger sink, backsplash, and pendent lights.  It is going to be beautiful to me and I can't wait!  

In an effort to save money we (by we I mean Scott mainly, with the help of my brother James, my pops, and my brother-in-law's Tone and Ryan) removed all the flooring.  That was a intense process and exhausting, but it got done.  We also decided to paint the entire house by ourselves.  We have painted all of our houses so this seems like no big deal.  Wrong.  

I was hoping to get all the painting done before my next chemo and also before work started on the kitchen.  Off we went to buy our paint at Lowe's not knowing that their merge with Sherwin Williams would be a negative combination.  The paint in the first set we bought was the color I had picked out  and loved.  We should have had enough paint to finish the entire house if was not flat paint and I swear only a primer.  So we ran and bought more paint.  The second set of paint was a slightly different color but not noticeably different till it had dried.  Of course it was all the cutting, or edges, that I had done that were wrong color.  Back to Lowe's we go and explain the problem to the paint dude who gives us another bucket...we go home redo the room...wait to dry...doesn't match.  By this time 90% of the house is done and almost every room has to be repainted. 

Scott and I went to Lowe's that night with every container of paint we had bought and pictures to show them that it really wasn't the same color even if the name matched.  I honestly thought it was chemo brain and I was the only one that could see the colors were different the first time it happened.  Come to find out they got a new paint mixer when they merged with Sherwin Williams and it was screwing up all the paint.  We got back all our money plus all new paint, which is great, but we still have to repaint the entire house again! 

In my mad dash to get the painting done before my next round of chemo I didn't stop to eat lunch one day.  Mind you I ate two kind bars, a ton of cashews and 2 apples, but it wasn't a traditional "meal".  Scot and I painted from about 7 am till 6 pm.  When we got back to my parents we were both starving and dinner was ready so we sat down to chow down.  As we were eating we were all talking about my day and this is when the first weird thing happened.  It started slowly, I miss said a word...like it got jumbled coming out.  Then I said an entire sentence with the words in the wrong place.  Example: let the dog outside, was actually coming out of my mouth as, dog the outside let.  After that I tried to just speak and it was jibberish, not intelligible at all.  I remember Scott put his arm on my shoulder and told me to wait for a bit and not talk.  When I tried again I had to go super slow and all I said was what the heck is wrong with me?!

Dinner progressed on and I got a text from my friend Miranda.  I tried to read the screen and couldn't focus enough to read the screen so I had to have Scott read it to me.  Then when he handed me back the phone I dropped it because my hand was numb.  At this point I looked at everyone and said I needed to go lay down.  By this time it was almost 7.  The next thing I remember was waking up at 8 am the next day.  When I came out of my room my mom looked scared to death.  I felt fine, normal even.  We talked and decided it must have been that I hadn't eaten or drank enough while painting.  So at this point I am back to my mom trying to force food down me...and the house is still not done being painted.

Then last weekend Scott and I had a wedding for some good friends down in Newport.  I really wanted to attend and because of where it fell in the schedule of my chemo we decided it would be okay.  Since my diagnosis I haven't really left the house beyond going to the doctor because I don't want to end up in the hospital over a cold or worse.   So this was a big outing.  My oncologist said it would be okay but no flying, too many germs.  She gave other recommendations like stay near an open door or outside at the event if possible, don't shake hands, and no fish.  Scotty and I like a good road trip so we were excited!

The drive down was nice.  Scott stopped more frequently than we typically do to make me get out and stretch my legs, go the bathroom, and eat (because my mom lectured him I needed full meals in hopes of never having that weird episode again from the other day).  I never noticed that my legs felt any different nor did I LOOK at my legs until we got to Newport and went to grab dinner.  When I stepped out of the car my legs felt heavier than normal and when I looked down, THEY WERE ENORMOUS!  I swear it looked like my legs had doubled in size and my toes were so fat I thought my toenail was going to physically pop off. 

My super sexy swollen legs stayed the entire weekend (in case you are wondering they are still huge now) and that cut down on any adventuring we might have done while down in Orange County.  We did go to one set of stores to find the kids a little gift but other than that I slept or laid on the ground with my legs against the wall.  It was pretty lame.  However the wedding was amazing, think People Magazine amazing.  I didn't shake hands with anyone which I am sure people thought was rude of me, nor did I eat fish, and I couldn't get up to dance with Scotty because my feet and legs were throbbing but it was a wonderful weekend.

I wore a wig for the first time too...I know lots of women with cancer love the wig but I am not a fan.  Though I am sure no one is looking at me I feel like it makes me stand out and scream I have cancer more than a bald head.  Seems dumb I know and it isn't rational at all but to me everyone knows I have cancer, they know I am bald, I'd rather embrace it I guess.   I will say it looked better than I thought it would...made me miss my hair quite a bit.

I am going to see my oncologist this morning about the wacky things that have been going on.   Pretty sure I am going to need a water pill of some type to get rid of the swelling...

Chemosabe 4

It's one week in from round 4 and so far I am doing pretty good.  There is a part of me that wants (desperately so) to say I am getting the hang of chemo but I think it is wishful thinking.  Whatever helps you sleep at night right?!  Seeing as its 4 am and I have been awake since after 2 it isn't helping, but I feel better telling myself, "you got this Alicia!"

As far as side effects come and go it has been similar to the last few rounds.  Food smells wonderful and tastes horrible or like nothing (yet I gained 2 more pounds which boggles my mind).  All liquid tastes like it is rotten and I mean ALL LIQUIDS: water, coffee, tea, Gatorade, sparkling anything, juice, you name it (only thing I haven't tried yet is kombucha).  Since I am having issues with my blood and anemia I continue to try meat every night at dinner only to end up spitting it back up into a napkin.  So yeah, meat sucks as bad as my table manners these days.  I just got a new protein supplement to try in my morning smoothies to help with the iron issues.  Keep your fingers crossed I can suck it down.

One of the recommendations with cancer is to exercise.  This seems like an easy thing to do when I have done it my entire life yet when you toss chemo in the mix it gets a little bit harder.  My workouts are nothing intense, some days I ride a stationary bike on the lowest level because I am so darn tired but a workout is a workout so I try to get something in every single day.  On Tuesday I was finally feeling energetic enough to get off the bike and do an actual HIIT workout.  To be safe I decided 20 minutes, low intensity, with a focus on the legs (think squats, lunges, maybe a burpee).  About 10 minutes in I started to feel light headed and really hot.  My first thought was, I need to do more workouts like this because I am severely out of shape, when all of the sudden everything started to go black.  I reached out to grab a table to the right of me to steady myself with only to end up falling over to the left.  Thankfully I partially hit the couch.  Brody was in the room with me and he started to scream, "Mom what happened?  Did you just get shot!?"  Which now, days later, makes me bust up laughing because it was so random.  When I asked him why he asked that he explained he had never seen anyone fall over like that except when someone is shot in a movie (note to self, I need to ask Scott about the comic book movies they have been binge watching).  At the time I was so out of it that I couldn't even respond or move for about five to ten minutes.  No idea why this happened but I never finished the workout...and the next day I didn't do any form of exercise beyond walking from my bed to the bathroom.  Really hoping that this doesn't happen again...

Last week I wrote an entire post about my bad blood.  It is difficult to say with 100% accuracy that my blood is getting worse without an actual blood test, but I am getting more bruising which means it probably is.  The largest bruise on my arm from almost three weeks ago now still has not gone away and it is just so ugly to see.  That bruise is joined by so many new ones, thankfully most are smaller and less tender.  It makes you feel very frail when you look at your body and see the visual portrayal of how weak you are becoming.  I know I write this often but cancer is mentally draining.  I feel like me; capable, independent, strong.  Then I look at myself and know that right now I'm not.  

One area that no one without cancer really wants to know, but those of us with cancer talk about at great lengths, is what goes on in the bathroom.  I am happy to report that I am having more days without constipation this round!  This may seem like no big thing but it might make me as happy as not having the rash come back.   It has decreased the severity of the cramping in my stomach and back.  I told my mom the other day I think I am looking forward to being able to eat something, have it taste decent, and then have a normal bowel movement after chemo is over...it's the little things my friends!