Sunday, September 22, 2013

Round 5 starts tomorrow!

Halfway through this week, I realized that my cough was finally FINALLY getting better, and how bad I had actually felt the week I was in the hospital.  I also had to get over the disappointment of having to get hospitalized - I thought I had been doing so well, following the rules and being careful!  I even initially started considering that I should do a little less, stay at home more, just lay low till we're done.  

Thankfully, I have doctors who understand that part of the reason I need to "do fun things" is for my emotional health - they reminded me that I've gotten this far, that I should continue what I've been doing.  So... I will be a little more cautious, but probably just a little...

In other news, as I finally started feeling better as the coughing fits subsided, it became apparent that my taste was coming back!!!! It seems my taste buds need about 3 weeks after treatment to start working again!! This was a relief, I had read accounts of people waiting about 6 months after chemo before anything started to taste good...

Needless to say, I've been going through some of my favorite meals (my Mom's arroz con pollo, my homemade mallorcas, tapas from Spanish restaurant, kabobs from Lebanese place, and CHOCOLATE!!!!).

I went out with my in-town-for-a-wedding pregnant friend.  I was careful, and walked into and out of The Cheesecake Factory wearing a mask.  It was worth it for the visit, and for the deliciousness we got to enjoy.  I wondered whether to post a picture of myself with food, mostly because my friend Kevin has taken (and posted) TOO many pictures of me mid-bite which is never flattering.  However, apparently the look of sheer hoy on my face was awesome.  Here goes, the first time I enjoyed a dessert in months!

I had the Godiva cheesecake... :)

Saturday, September 14, 2013

Whew, what a week! (In and Out of Hospital)

Whew, what a week!

Last Saturday we spent the afternoon at a 2 year old's birthday party, and my daughter had SO much fun playing in the sandbox with her friends.  I had a minor headache, and some cough that I attributed to the mouth wash/medicine I had taken that week.

Well, fast forward to Sunday morning - I had a bad sounding cough and just didn't feel right.  I felt like I was getting sick, so I tried to take it easy and was checking my temperature every couple of hours, just in case.  Around 5pm I had to cancel on a shopping trip with friends, and a couple of minutes later, I checked my temp and found that it was 100.6deg - fever!  My oncologist and all the oncology nurses have constantly reminded us that if I ever had a fever we had to rush to the ER because chemo patients are immuno suppresed and even a minor cold can be dangerous for us.

We put shoes on, grabbed the diaper bag and headed out the door.  On the way there, I called the on-call number for onco office, and doc said since it was a low fever, we could afford to wait the 45 minutes while driving to UCLA, so off we went.  We also called my father in law and asked him to also drive North so he could pick up my daughter (we really didn't want her hanging out in the Emergency Room, especially because last time we spent hours in a hallway!)

Well, it was very much like a scene in a movie - I walked up to the triage nurses at the ER and said I was a chemo patient with a fever (by then it had reached 100.9deg), and they made things happen!  The waiting area was almost empty, but within minutes they were checking my vitals, and then moved me to a bed.  It took about another 15 minutes and they got us into a room in the ER.  They started me on fluids and antibiotics pretty much right away, and they also took blood samples from my arm, and from my port a cath.  It seems one of the first things they worry about is that my port a cath might be infected, so they treat it as suspect and give me the medicine through the vein in the arm...  During this craziness a very sympathetic young female doctor walked over and told me that I was being admitted - and that pretty much if I ever walk into ER again while still wearing the port they will admit me for at least 24 hours.  So, I figured one night might not be too bad and we already had the baby covered.

I won't bore you with all the details, but at 10:30ish that night I was finally wheeled into a room in the hospital's oncology ward.  During my time in the hospital, I initially got worse (fever hit 101.3deg and resting heart rate was in the 120s - which is pretty high).  My throat hurt so much it hurt to talk, and the nausea/motion sickness made it very difficult to even read/respond to text messages.  So, I took lots of naps and watched a lot of bad TV.  By Monday the doctors were saying it might take up to 7 days for them to release me, so we asked my Mom to fly out and help too.  There's only so much time my husband can take off from work...  The suspected diagnosis was pneumonia, even though they weren't able to prove it.  Actually, none of the cultures they took came back positive, so doctors suspect it might have just been a virus that got me.  Unsurprisingly, my daughter is sick too - no way to know whether I got her sick or vice versa...

Fast forward to Wednesday afternoon when the doctors were starting to say I might go home soon, and they finally released me wednesday evening.  Got to hang out at home on Thursday, 2 doctor appointments on Friday, and now home trying to take it easy so I can kick whatever is making me sick!  When we saw the oncologist on Friday, he decided that we should delay chemo by a week.  He says I've made incredible process and have tolerated chemo well, he thinks it would be a mistake to do chemo while I'm feeling so under the weather already.  My husband and I had very mixed feelings about this, because we both can't wait to be DONE.  My Mom had *just* been telling me earlier in the day how we would be done in 4 weeks (although I always count the next week since it takes that long to feel like myself).  I had *just* added chemo week 6 to the calendar, which I had been hesitant to do before because I didn't want to be disappointed.  Oh well, if this what I'm complaining about, then I am one lucky girl.

So.... In approximately 6 weeks I hope to be done with this treatment!  Between now and then, I have to do a better job of steering clear of sickness.  Don't worry, I will still have to find fun things for us to do, it is part of my emotional therapy to go out and enjoy life. :)

Wednesday, September 4, 2013

Day in the life of a chemo patient between treatments...

Go to bed feeling happy after a nice dinner out with in-laws, feeling grateful that your mother in law was able to help out so much with daughter before flying back home.  Feeling good emotionally and physically, don't even need a pill to fall asleep.

Wake up in a frenzy, your husband has already showered, but seems to be running late and baby overslept too.  Realize that your left arm is asleep, again.  Worry that the neuropathy is getting worse, remind yourself that it should go away after treatment is done.  Realize that your throat BURNS and start coughing.  Worry that all the work your family put in the last couple of weeks to keep you safe from the cold that was going around didn't work.  Don't mention any of these worries to your husband because he's late already.

Get out of bed, thinking you will get hugs and kisses from daughter, but instead get same morning crankiness you usually experience yourself.  Fast forward through breakfast, making of the latte-to-go, and giving lots of goodbye kisses.  Realize you're alone in the house and should probably eat even though food tastes like cardboard.  After breakfast, get back in bed because you do not want to get sick and sleep is the best medicine - and husband said to take it easy today.  Get woken up 2 minutes later by alarm you set up for antibiotics.  Get out of bed, take meds, get back in bed.  Remember you also need to take the new medicine for the infection in your mouth.  Start coughing and get burning sensation in mouth again.  Experience relief because your sore throat this morning was from medication, not because you're getting a cold! By this time you're too awake, so go out to living room to watch some TV and relax.  Remember that you got an email coupon for 100 free prints on shutterfly, so pick all those out and order them.

After a couple of food TV shows, decide you need to get some stuff done.  Unload and reload dishwasher, fold some laundry, pay some bills, cancel that service, etc.   Decide it's time to try to do whatever you can to spice up food for lunch.  Stand in front of stovetop for 30 minutes adding sauces, spices, drops of lemon, and whatever else you can find in the hopes that the sauce will taste like something.  Finally decide that you can get a hint of the taste, and serve yourself.  Sit down to eat, only to be disappointed because the chicken still has the very grainy texture and mostly still tastes like cardboard.

Determined to be productive, you shower, and change.  Decide not to wear makeup because you're only going to run an errand and you want to get back before husband and daughter get home.  The number one priority is to buy a replacement bulb for the fan light that stopped working last night so you can have some light in your room.  While at Home Depot, decide to buy a couple of supplies your husband had mentioned needing before he can install the shelves and frames you want in the playroom.   Feeling accomplished, and armed with all the "cooking for chemo" articles you read last night, decide to go to grocery store and get food for today.  Skip the cart and grab a basket, because you plan on getting very few things.  Start in the produce area - pick garlic, tomatoes, bananas.   Be approached by a gentleman with a backpack and headphones while selecting bell peppers.  "Are you doing that chemo thing?"  When you reply yes, have him tell you that 1) the hair will grow back if you stop chemo, and 2) if you give yourself to the Lord you will be healed, or will start healing, or something.  The man seems oddly aggressive, so thank him and walk away as fast as you can.  Oddly shaken by the encounter, remind yourself that when you decide to be authentic and show your baldness, and ever diminishing eyebrows, you open yourself up for comments like that.  Have a couple of cell phone conversations with your sister, but line keeps getting cut off.  Continue shopping, realize basket is getting heavy and your sister in law would be yelling at you for not conserving energy.  Leave basket on floor after telling a store employee you will be right back, and get a cart.  Realize as you are walking back with cart that you should have asked said store employee if they wouldn't mind getting you a cart.  Proceed to checkout, have nice checkout lady ask (almost in a whisper) if you are "fighting the good fight" and give some encouraging words.

Get home, look up recipe for creamy garlic mashed potatoes that you are hoping to make so potently flavorful that you already have a Plan B side of rice for your daughter.   Realize that after all that, you forgot to get potatoes because of the supermarket guy.  Decide on another menu for dinner, and start cooking.  Make a quick sangria with the recipe your mother in law mentioned the other day, because you can.  Hugs and kisses to husband and daughter when they get home.  When friend mentions she can return your cat since she was watching him for this round, invite her over for dinner too.  Enjoy what others mentioned was a delicious meal, feeling grateful that while you're not enjoying your food, at least you are not hungry.  Decide to blog today because you realize it has been a bit and people might be wanting to check in on you.  Ponder the writing style for a minute, and realize it is because today felt like many tiny moments.  Plan to respond to some emails and make some phone calls tomorrow.  Go to bed. :)

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31 year old navigating life with husband and almost-2-years-old daughter :)