Tuesday, July 30, 2013

2nd PET scan today!!

UPDATE: I have an appointment with the oncologist on Friday, and we will get the results then!  In the meantime, I'm trying to pack as much fun (and some resting too, still getting tired easily)  into the next couple of days before the next round.

The good news is that they didn't give me too much time to worry about it.  Second PET scan is this morning.  I haven't eaten in 7 hours so I'm already hungry and cranky, but I'm visualizing good results (no active cancer cells, that's what we want to hear).

Thanks for all your positive thoughts!

Tuesday, July 23, 2013

Round 2, Week 2, Day 2

Well, it's been awhile!  This second round of chemo was tough, but not awfully so.  In some ways, the first round was rougher because I was still dealing with the pain of the biopsy and recovering from the new port a cath procedure.  The doctor had warned us round 2 might be rougher, because most of my doses went up by 20%.  The main problem I had was nausea, like I had never experienced before.  I've already mentioned (and I had been warned) that nothing really tastes "right" while on chemo, partly because of the constant metallic taste in your mouth.    Well, on top of that constant bad taste, I felt like I had motion sickness for days.  I took the meds, and they helped enough that I didn't actually get sick, but it was a tough feeling.  It would also get worse when I dealt with my phone or computer, almost like when you try to read while in a moving car.  I basically gave up on electronic devices for a couple of days!

I also felt more tired, and the emotional component was a little tougher this time.  I had to try harder to stay focused on the positive side of things.  I kept feeling like I should do more - yet would get really tired just by trying to change my daughter's diaper, or picking up something from the floor.   I had to remind myself that if the toddler says she doesn't want to hug you, it's not that she doesn't love you.  This only lasted for a couple of days, but it is definitely part of getting off of the steroids.  Other symptoms?  The rapid heart rate I had last time is back, it seems to go on for a couple of days post chemo, just means I need to take it easy.  Oh, and the dreaded all-your-muscles-hurt symptoms still happened, but I was better able to manage them with Tylenol and sleep this time.

Yesterday we went back to UCLA for the famous white blood boosting shot.  They checked my blood count, and white blood cells and platelets are doing good so far.  We expect the neulasta to work it's magic like last time and keep me healthy.

It seems that somewhere between Monday and Tuesday of Week 2 post chemo is when I begin to feel like myself again.   Yesterday I was able to play with my daughter, and move around with her on the floor, play on the couch, etc.  It was great to hear her laugh with her Mama!  Today I was able to prep some of our dinner (I cut and sautéed veggies, yay), and unload and load the dishwasher!  I know those seem like little things, but they are major accomplishments to me. :)  Tomorrow I'll try the piano again, and maybe some walking around the neighborhood.

The good news is that next week I'm supposed to have another PET scan, to make sure that the treatment has made the cancer cells inactive.  I am looking forward to having fun the week and a half I have before the next round, and can't wait to see the results of that PET scan.  My husband and I are already dreaming of the vacation we're going to take when this is over. :)

Monday, July 15, 2013

Round 2 Day 1

Same as for first round, we went out to one of my favorite restaurants the night before chemo.  My father in law was nice enough to babysit, and then stay overnight so he could help with our daughter in the morning since we had to leave for infusion center before 6:30am.  The place I picked was Magic Lamp, a Lebanese restaurant in 2nd St.  The steak and chicken kabobs with garlic sauce were delicious as usual, and the company was great.  I even had a glass of wine!

On Monday morning we hurried out the door and I forgot the numbing cream that I was supposed to use on the port area to reduce pain when they access the port (it's called Emla cream, and it is available via prescription).  I figured since I was OK without it the first time it wasn't worth turning the car around!  Once we got to the infusion center, I was weighed, temperature, blood pressure, and heart rate were checked.  Next my port was accessed, it was flushed with saline solution to make sure there were no obstructions, then they drew blood.  After a couple of minutes, we got the printouts showing my white blood counts had gone down (but were still high in the normal range - thanks to neulasta again!), and my platelets went up from last time (yay, eating more meat probably helped that!). The doctor later explained that since I had I had tolerated the first round so well, we would follow the dose adjusting part of the protocol and most of the chemo drugs (except for vincristine and prednisone) would be raised in dose by 20% for this round.  We agreed with that, ready to kick this cancer's butt!

We started around 8am, and left about 2pm - after getting anti-nausea meds, Benadryl, and hen hours of Rituximap (which is just once per round so it's not in my pump).  Finally, the nurse installed the pump I'll get to carry for the next of the week, and we were sent on our way.  I got to nap for abut at home, then decided I felt well enough to go see my husband and friends play softball.  I'm unsure whether they won or lost the game, but my daughter had a great time playing with the other kids, as usual.  I got to sit on a comfy beach chair our good friends dragged to the park, and am very thankful of the other adults that did the running around after the kids (that's been my job before, and it is quite tiring!).  Afterwards I felt well enough to join the team at pizza, I think that's the first time since all this craziness started in May.  After getting home I got to catch up on all your awesome messages of support, thank you!

I just realized I didn't even mention that I'm almost completely bald now!  Here's another picture update, I'm hoping the eyebrows and lashes will stay for a bit longer.  If not, I'm ready to fake them with makeup thanks to a youtube site/blogger that my cousin told me about (it is written by a young woman with alopecia, if you're going through hairless too, chech out eyelineher.blogspot.com).  I got a ton of compliments on FB already (thanks!!!!!) and it honestly feels better to go bald than to wear hats or anything else on my head right now. I do wear a hat if I'm outside and not in shade, since I'm trying to be very careful of the Sun exposure on my extra-sensitive chemo skin.

Tomorrow, and every day this week until Friday, we will need to get the empty pump bag changed out for a new one. On Friday they will take out the pump, and then I will have only 4 more rounds to go! :)

Sunday, July 14, 2013

Round 2 starts tomorrow!

Tomorrow chemo round 2 will start.  I'm a little nervous, because now I know what to expect!  I'm hoping I don't get the back spasms this time, and I'm hoping that by washing my teeth after every meal I can diminish or at least delay the gum/mouth pain.  I also know that taking naps during the day and saving up my energy for the things that matter is the way to go.  My husband reminded me that during the week of chemo I felt pretty good, that it is after the chemo ends (and really when coming off of the steroids) that a lot of the side effects begin.

Since I will be getting the pump again this week, and won't be able to take a proper shower till Friday, I took a long shower tonight.  Earlier today I was telling a friend how it's funny that I still wash my hair with shampoo - and it wasn't until I got out of the shower that I realized how amusing that was.  It turns out, my hair needs very little help to just fall off.  Posted below is what my hair looked like after the shower, it is obvious where I rubbed the shampoo on!

In terms of news, I'm feeling better!  Just in time for next round... I am looking forward to round 2, because getting through it will get us closer to the end goal of remission!

Wednesday, July 10, 2013

Bald Is Beautiful :)

We got good news on Monday!  The white blood cell boosting shot they gave me last week is working great, my counts quadrupled!  My platelet count has been slowly going down since chemo started, but it is still within limits so we will just continue to monitor.

I got distracted and didn't write on Monday because we got a piano keyboard!  It was perfect timing, because Tuesday was my first day on my own (my Mom flew back to her house some days ago and my husband was at work).  I napped a lot, and had a friend visit who taught be about piano chords, so it was a success.  Today I drove all by myself the 7 minutes to get to my local Starbucks and meet up with a friend.  It felt great to drive myself!

Really I'm just delaying what I wanted to write about...  Over the weekend I felt like my scalp was tingly.  My hair started falling off on Monday, but only a little bit.  We made sure to buy hair clippers at Target, to have them ready.  By Tuesday, it was obvious that it was falling off, but it wasn't too bad.  By this morning, I knew today was the day we would finally take the clippers to my hair.  It was obvious when hair was falling in my cereal without anything touching my head!  I mention using hair clippers instead of saying I will shave it off with a razor because chemo patients need to prevent cuts as much as possible.  This is what my hair looked like today, and also what my hand would look like if I so much as touched my scalp.

Armed with tips from my stylist friend (go against direction of hair growth, cut from bottom to top, go in all directions at the top to make sure it is even) - I sat in the patio while my husband took the hair off.  My daughter didn't love the process, I think she was scared the machine was hurting me and would kind of cry out.  We stopped a couple of times to reassure her that it was all ok.   At first she walked away from me with the short hair, but then I got hugs after she was able to touch the bald-ish head!

We started with a #4 cut, then went down in length.

I forgot to take a picture of the #2 cut, but here's the final result!  I thought I was going to have to hide it from my daughter, but she's doing just fine with it now.  I wore a hat when we went out to dinner with friends tonight, but ended up only wearing it into and out of the restaurant, I didn't feel self-conscious without the hat.  That's probably a credit to my awesome dinner companions, and to our waiter who thankfully didn't say anything about it.

So that is it!  I love not having to pick up hair from everywhere, and the hair follicles don't hurt now that the hair is so short.  I will need to remember to cover up even more when out in the Sun.  Don't I look like I'm ready to kick cancer's a$$?

Sunday, July 7, 2013

End of Round 1 Week 2...

Tomorrow is the beginning of the mythical Week 3 - the week when I am supposed to be feeling better,  when I am supposed to feel so well that I am feel ready for chemo Round 2!  I have lukewarm feelings about this.  While I feel well, and everyday I thank my lucky stars for  the minimal side effects I've actually had, this is still really difficult.  I have started to understand where all the "conserve your energy" advice came from!

Throughout the years, my perspective on being tired/fatigue has changed.   I've had to some shift work in my career, and I used to think that switching between night, evening, and day shift - especially when leaving work in the middle of the day to force myself to sleep and come in later - meant that I knew a bit about being mentally and physically exhausted.  That changed changed when I had my daughter, and I realized that the tiredness of not sleeping due to a crying child was worse than any I had ever experienced just by messing up my sleep cycle.  Well, chemo has taught me that there is an even higher level of tiredness, and it is very difficult to explain.  One minute I feel fine, and suddenly I feel as though a wave of fatigue washes over me - and I have to quit whatever I am doing.

For a while now, I have been telling myself that the next day would be the the day that I would feel "normal" and be able to do the 10 million things I keep thinking I want to do.  It has taken me a week to realize that I am now at a "one outing/visit per day" activity level.  I have still been able to see some friends and visiting family and enjoy myself - but I feel like I haven't been able to interact as much as I would like, and I definitely feel very tired quickly.

The good news is, that I am also learning to conserve my energy, and to do things to prevent/counteract the unpleasant side effects I've been having.  I've been getting crazy back spasms, worse at night, that have been making it really tough to sleep, and I still haven't recovered fully enough from my chest surgery to sleep lying down.  So, my husband did some research and got me this awesome recliner chair for people with back issues (yes, I am an old lady with a recliner, don't judge).  It is SOO comfortable, I might have to tell my friends to come over instead of trying to go out to restaurants - between the chair and the heating pad for the back, I can really relax!  And no worries, I'm not becoming a couch potato or staying in place for too long.  I'm trying to move around, stretch, walk or dance a little with my daughter when I can.

This is sounding like a depressing post, but every day we have good news - even if they are baby steps.  For example, I just realized my mouth doesn't hurt as much today - I don't need to avoid toast tomorrow morning!  I also came up with a great idea on how to spend my time.  I have been reading a lot, but not exactly literature that will make a better Joelle.   My mother-in-law had suggested, and I thought she was joking, that I figure out the things I had always wanted to do and schedule those into week 3.  It seemed eerily like a bucket list, but it got me thinking...

For some time, I have wished that I had learned to play an instrument when I was younger.  Not that I ever considered it growing up, but when I got to college I realized I had missed out on the art of reading and playing music.  I have been doing some research, and have decided I want to learn to play the piano.  I LOVE the sound of piano music, and the music I listen to when trying to relax (which I've been having to do a lot of when trying to lower my heart rate lately!).  I'm starting by learning to read sheet music. I have been amazed at all the good information to be found online (and the great teaching videos on youtube).  Three days ago I didn't know the symbol for treble or bass, now I'm practicing at reading notes quickly and determining where on the piano they would go (with an ipad app, of course).  I will be checking in with my musically inclined friends for suggestions on local music store - I want to get a compact piano keyboard that I will be able to plug into my computer while learning (there's not really space for a free-standing piano in my house).

In other news, I have a checkup with my oncologist tomorrow, mostly to check my blood counts and make sure they are within the normal/healthy range.  Hopefully, I will have good news to report!

Tuesday, July 2, 2013

Feeling better!

Technically, today is the 3rd day since my 1st round of chemo ended, and I'm finally feeling better!  We left the house to go to a doctor's appointment, but I had enough energy that we walked around for a little bit.  A good friend of mine mentioned I was looking sick in my last entry, so here's a picture from earlier today of my smiling self.  As you can see, I still have hair - but the doctor didn't really expect it to be around by next weekend, so we will see what happens.

My muscle pain and spasms have mostly subsided.  I still spent a lot of time napping and saving my energy, but I felt much more like my normal self (I have been able to apologize to my husband and Mom for my bitchy self, and they both pretended it wasn't that bad).  I felt well enough to pick up my daughter off the ground - which was a huge step forward!

A group of my friends got together this weekend and cooked a whole bunch of awesome frozen meals for us.  I didn't feel well enough to go visit them, but we did a video chat and it was great to see them and thank them.  We now have a freezer full of yummy foods that we can either thaw or cook in the slow cooker.  It was an awesome idea and we are humbled that they would do that for us.  We've already sampled the first chicken casserole, loved it, and had it for lunch the next day. :)

We're looking forward to the week, glad it is not filled with doctor's appointments!

Monday, July 1, 2013

Too tired to write... (Monday post round 1)

My plan is not to hide on bad days and boast about my energy on good days, the idea is to be honest about the process and take the time to put my thoughts down.

However, I have been too tired to think, too tired to write, and I have painful back spasms that are trying to get the best of me.  I'm saving up my energy for my husband, daughter, and Mom for now.  I will catch you all up when I'm feeling better, I promise.  

The good news is that I got the white blood boosting shot today, and that while my platelet count has gone down, the white blood counts and platelet counts are still within normal limits.  Yay!!! No need to put me in a bubble!

I'm busy fighting cancer, guess it's going to take a toll.  Thanks again for all your positive thoughts, prayers, and support - it is helping!

(From PostSecret.com)

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