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Thursday, September 29, 2016

Hair Today...Gone Tomorrow

I feel like I should write something about my hair.  To be honest,other people seem more upset by it than I do, but it is definitely a significant part of this whole cancer process.

This one day when I got hair done and it looked nice:

I was told that most people lose their hair due to chemotherapy, and that I should expect it.  I was also advised by various cancer survivors to just go ahead and cut it off since the actual act of losing it is emotionally upsetting, and it is yucky to have to clean up hair off your pillow each morning.

And it was.  In the midst of the crazy chemo yuckiness that I experienced, I had huge wads of hair falling out all over the place.  I am not particularly attached to my hair, as I never learned how to brush it or style it or do anything with it, but it was still sad to run my hand over my head and come away with gobs of hair.  And it was gross.

So, I invited my family over and my amazing sister-in-law, Megan, went to town with the clippers for me.  I still had a lot of hair at this point, but it was shedding so badly that I needed to do something.  This was very helpful, and while I was still shedding like crazy after this cut, it was more manageable in small pieces.  Megan was wonderful and it was nice having my mom, sister, brother, and family around to give me moral support while we chopped it off.


Then, when Brian and I got back to MD Anderson for my next treatment, we went to the free salon and had it cut even more and were given a free wig.  This cut felt better, as it was so close I don't really notice the shedding anymore.  I actually still to this day have a lot of hair, but the bald spots around my noggin are getting more and more pronounced each day.  Not sure if I will ever have the completely smooth bald head or not.  We'll see.

The wig is hilarious.  I have only worn it in public twice, I think.  It is really uncomfortable and HOT.  So much sweat up under that thing.  But, it does look decent and it is nice to have it as an option if I want to look or feel a bit more normal one day.

I still prefer the baseball hats (and thanks so much to Kathy Alspaugh for the awesome new hats!!) and have recently started embracing the scarf a bit more since baseball hats are a bit too casual for all events.  I much prefer comfort over style, so the wig I think will be for special events or at the children's request only.


The lack of hair does not bother me much - I think have too many other concerns to really care about my appearance - but it does feel super strange in the shower, and in the few instances when I have gone out in public bald, I feel like people are staring at me a lot.  Not so much in the hat or scarf, but when bald, I definitely get the weird stares.  I wear a little cotton sleeping cap thing at night and during the day when I am just hanging out at home, as it is really comfy.  But, I look crazy.

Jeremy has been sweet and tells me every day that I am beautiful.  He says I look like a cool army woman when I am bald.  Violet has been unimpressed, though she did enjoy playing with the wig.  Despite losing your hair being one of those quintessential "cancer" things, it has really been a non-issue for us, which is totally okay with me.

Still, I am super excited that Thursday is my LAST chemo treatment (should all go well...which it WILL), and I look forward to getting this hair growing again.  My face is entirely too round for such a short cut.  :)

Monday, September 26, 2016

PEG Tube (photos and medical details, so only read if interested)

Several people are fascinated/ have asked about the tube, so I thought I would explain a little bit.  Again, I got the PEG tube (Percutaneous Endoscopic Gastrostomy tube) after my first round of chemo went haywire and I was unable to eat or drink properly since my tumor started acting strangely in my mouth.  I was going to get the tube no matter what as a part of my upcoming surgery when they remove the tumor, so getting it early was not a huge deal.

Basically, it is just a plastic tube that has been inserted into the upper part of my stomach.  It has a clamp and I can use it to drink water, take medicine, and eat liquid food, kind of like juice boxes of Ensure.  If I am not able to eat at all by mouth, then I should be taking in at least 4 feedings a day plus added water.  Currently, I am eating totally normally by mouth, but I am still using the tube multiple times a day for water and sometimes medicine. I don't want it to get clogged or backed up so I make sure it is used a lot.

At the risk of sharing too much information, this is what it looks like:
This was one random day when I got dressed up and wanted to feel normal - my wig is hilarious - but you can see that stupid tube sticks out horribly and I don't like putting too much tape on my skin
this is the actual tube where it is inserted in my stomach - it is hard to show scale here, but this is the actual tube (this was the first picture originally, but I realized it showed up in my post so I switched it with the one above to not gross people out who didn't want to click on my link - hee hee)
this is what it looks like on a daily basis actually attached to me - I have these sterile pads I have to change every other day (it is an open hole so it has to be cleaned with special stuff) and you can see how long it is and how I have to tuck it up in my bra - it is really hard to hide it under clothes - and ever since I got it inserted, my stomach has been bloated and sticking out and hard to the touch - it is super sexy (obviously a huge concern of mine at the moment - but worth noting)
A company sends me the food and tube supplies every two weeks in the mail.  I have an IV pole that I borrowed from my Aunt Lynn (she uses it for her skeletons at Halloween - this makes perfect sense if you know her), and we hang a gravity bag for the food from it, which then drains down into my tube.  It feels super strange to have something pumped directly into your stomach.  Sometimes, it makes me really full and if I burp I can taste the formula.  So.  Gross.
my juice boxes of "food"
what my bathroom cabinet currently looks like - food, tubes, sterile bandages, it is super classy my life right now...
the syringe we use when we manually do water or medicine in the tube
my IV pole and one of the gravity bags after a feeding
in a strange twist, Violet thinks this is the coolest thing in the world - Dr. Hopper helps clean the tube, use the syringe, and basically wants to be a part of all the tube fun - it is cute - Jeremy has stayed far away so far, and that is okay too
my view when the food is being pumped in - I just sit back and relax while it goes in - it takes about 45 minutes to do a full feeding, but only 5 minutes when we just to water
The site where the tube goes into my stomach is the only issue I am having.  By this point, I was expecting to not need bandages at all and to have no pain.  Well, I still have pain and still need bandages that I have to change and clean every 2 days.  I am following up with the docs about this in a few days, but it is yucky.  I don't think I have a full infection or anything, I just don't think it has fully healed yet, which sucks.  Cleaning underneath that sucker is painful and I do not like it at all.

I cannot take a bath and when I shower, I have to tape a plastic bag over the tube so that the site does not get wet.  By the way, showering in general right now is just super strange.  I am always a little off balance and shaky, so that is fun, but I also have no hair and have a plastic bag taped to my stomach.  I am just really ready for all this crap to be over, but I know I am still at the beginning of this process.  Ugh.

Overall, I hate the tube and the fact that I had to get it early and how I am aware of it all the time - when I sleep, move, walk, cough, laugh, whatever.  But, I am grateful that I know dehydration will no longer be an issue for me - no matter what.  That was scary, so even if I go totally crazy, Brian or my mom or someone could still feed and water me and I could still get the chemo or whatever moving through my system.  And that is the ultimate goal, so I put up with this painful and gross huge plastic thing hanging off my body and try to make the most of it.  Really it is not that bad, and it gets more manageable every day.  I can do this.  I can do this.

Wednesday, September 21, 2016

Perks (updated)

So, did you know that while yes, I have lost most of the hair on my head, I also am not growing leg or underarm hair?

A gal's gotta find a bright side every now and then, and the ability for the first time since age 13 to not have to pick up a razor in the shower is reason to celebrate.

Let's see...I have time to do whatever I want for the first time in...well...ever!  I have either been a full time student with a job or a full-time mom with a full-time job my entire life.  I have had days off, but those are usually taken up with kids or vacations or chores or whatever.  These last few weeks have been decidedly lacking in tasks or things to do.  I have honestly felt pretty bored (I have no energy, lots of medication, and my brain is fuzzy, so still no work), but it has given me the time to be blissfully self-centered and trivial.  Kinda fun.

I have obviously been reading a lot.  I have finished the books that I had sitting around waiting to be read, and since I have read all of those (I ordered some more that should arrive soon), I am currently re-reading Harry Potter.  Naturally.  I am on book 4.  I find they are good for plane rides (I hate planes and yet find myself flying a lot these days in various states of health), though now that I am in the huge ones, that could be awkward.  I'll try to finished 4 and 5 before my next flight so I can get back down to a manageable book size for the trip.  I also read the sorta newest Harry Potter book, The Cursed Child, which was mostly disappointing, but I am sure is a fun play to see in person.  I do not choose to see it as canon and feel it was not great characterization in many instances, but I did enjoy the read.  I have to say, I have been meaning to re-read HP for a while now, so having the time to do so is super nice.  And to actually focus on it and not be reading in stolen time or in the middle of the night = total bliss!

I have also watched so much TV.  I completely finished Brooklyn 99, Happy Endings, am in the middle of Gossip Girl (I know - my TV taste is amazing), am catching old episodes of Top Chef, Project Runway, Say Yes to the Dress, etc.  Basically, anything light (I don't need hard drama or sadness in my life right now) and available on Netflix or Hulu is open to my gaze.  I have also binged some old Friends episodes, and naturally some Office, Parks and Rec, Buffy, and Angel.

And for the first time in ages, I have started on some current shows now that I can watch them immediately the next morning via Hulu.  I recommend both The Good Place with Kristen Bell and This is Us with Many Moore (despite it making me cry - it was happy/sad crying, so not too bad).  Granted, I have only seen one episode of both, but I liked them and it has been quite a while since I cared or had time for anything that is currently airing on TV.  Kinda nice.

I am thinking I might work on an article for publication for work.  I have been wanting to get something new published (I am currently the editor of a magazine, so my own writing has taken a back seat), so I think I may at least begin work on something of that nature.  We'll see.

I have also spent a ton of time writing thank you notes.  I have been getting a ton of really sweet cards from friends and family and members of churches, and my hands have been really shaky so it has taken me some time to be able to return them all a handwritten note.

I have made a list of small projects I think I will work on around the house as well.  Nothing big, as I still don't have a ton of energy, but little things like finally finishing cleaning up the spilled nail polish on the bathroom floor or organizing my dresser.  Things that need to get done, but have sat around for months and months since I am always too busy to get around to them.

I know it probably sounds silly and trivial, but I am really trying to focus on my day to day, and my day to day does not actually allow me to do much.  So, some TV shows, some books, some writing, and some little household projects.  Those are my perks right now and I am thankful to have them to help me get through these long days.

And oh my goodness, I just found these photos on my phone from back when Cheri and Mom were hanging out with me in Houston at Sharin's house for so long awaiting treatment news.  They were so wonderful, and I think I was so sad and in pain that I did not fully appreciate the specialness of being able to hang out with my mom and sister for so long a time.  It is really unprecedented and amazing and I am so thankful they are the wonderful people they are.

Naturally, the amazing house we stayed at had a pool that looked and felt like a beautiful oasis, so we took advantage of that at all opportunities.  I am glad I did since now I have a tube sticking out of my stomach and cannot even take a bath.  It was so relaxing and nice to have a little dip at the end of long days in hospital rooms.




I tried really hard to take happy pictures to send home to Brian and the kids.  
We also played a lot of Yahtzee.  If you know my mom, you know she always has a game, and this was an easy one to pick up each night and play for a little bit without much pressure.  This was after she got a Yahtzee and then the picture Cheri drew for me.  :)



We had several whole days to kill as we waited for news, so we went to 3 movies! That is more movies in one week than I saw in the theatres all of last year combined.  We saw Bad Moms, Star Trek, and Ghostbusters - all really fun and good for getting yucky things off your mind.  Plus, I got to take this photo with Cheri in the theatre, which is a win for life.

I finally moved back to the Memphis area, but my amazing sister no longer lives there.  I miss her so much, and I really cannot even explain how her giving up 10 days with her baby (right when they were moving apartments) to be with me while I was in a bad mood means to me.  She is the best.

And now that I have updated my perks with my amazing mom and sister, I find myself missing them a ton (and sad seeing these photos with my hair).  I am going to make a decided effort this weekend to get out and be social and create more perks in my life.  :)

Thursday, September 15, 2016

Chemo Sucks

And that is the understatement of the century.

I am going to try my hand at describing what it is like (for me) to undergo chemotherapy.  I will undoubtedly be unable to fully achieve this objective, but I really do want to try.  I simply had no idea, and I really wish I had.

Ok, so my cancer treatment plan is 3 rounds of induction chemotherapy, surgery to remove my tumor/rebuild my tongue and the floor of my mouth, and then radiation treatment to really cure that goose.

I am currently a little more than halfway through my 1st of 3 steps.  I am focusing only on this first step of chemo, as the others are equally terrifying and it is way too overwhelming to look beyond today right now.

My first chemo round was several weeks back when my mom and Cheri were with me for our first trip to MD Anderson in Houston.  We extended our stay by a day to get in the chemo treatment and the follow-up shot that occurs 24 hours after.

I was all prepared with my positive attitude (sorta), and while I really hate needles, I did ok with this IV (I am a hard stick they tell me and it is hard to find my veins).

This first time took over 10 hours.  That is not a typo.  They have to give me fluids between all the medicines and since it was the first one and they were being really aggressive, it took over 10 hours to inject me with all the different medicines necessary.  I slept for most of it since part of what they gave me was Benadryl, and my poor mom was a trooper with her iPad.  I had to pee like a million times and had to keep taking the IV pole down the hall with me to the bathroom.  It is hard to pee when you have an IV pumping into your arm.

Anyway, we survived, and went home really, really late that night to Sharin's house.  The next day, we went back and I got my follow-up shot 24 hours later.  Then, we headed home for real to Mississippi and Tennessee, respectively.

Now, I was told there would be side effects.  I was given both a booklet and individual packets for my different medications.  I spoke directly to a doctor and a pharmacist about them.  I was told I would be tired, nauseous, have muscle fatigue, get bad acne, lose my hair, have possible hand and feet tingling, etc.  Cool.  I was also told some people are energized by chemo if their tumors respond, and that there is really no predicting side effects for different people.

Now, let's recall that at this time, my tumor was huge in my mouth.  Like huge.  I was eating only pureed soup at this point for weeks and had been losing weight already.  My tumor was bleeding regularly (clots, so gross), and it was horrible.

I arrive home from MD Anderson after 2 weeks of being gone, and all I can think is "oh my God, I need my bed."  Not, let me hug my beautiful children and husband.  I need bed.  Now.

I fell into bed and did not move for I don't even know how long.  Chemo sneaks up on you and apparently tends to be the worst on days 3-5.  It is quite tricky how it leaves you alone for 2 days, isn't it?   Lulls you into a little belief that you are fine and then BAM!

I found myself in bed with no energy, no will to live, no will to sit up, no ability to move, and constant spit.

Yes, spit.  This, I was not warned about.

Since my tumor is in my mouth, when the chemo attacked it (yay - good thing!), it had to react and it reacted by creating thick mucus-y discharge that KEPT COMING out of my mouth.  Constantly.  It was so disgusting and if I swallowed it I felt nauseous, but I literally went through 2 boxes of kleenex spitting it out and I wiped my lips into oblivion.  Seriously.  I lost my bottom lip.  I am not joking,  It was over a week before it healed back properly.

But, that did not even matter because I had more serious issues at hand.  Everyone kept telling me to drink and eat and stay hydrated.  Cool.  I will just do that while I cannot move and am nauseous and keep creating spit and have no lip anymore.

Basically, I tried, I really did.  But, I am pretty sure I was severely dehydrated and constipated on top of it all.   Brian took me to the ER in Oxford and I got fluids, was diagnosed with a UTI, and they tried to help my reflux (caused by serious constipation) by giving me something to swallow (dumb) and I vomited blood all over the hospital bed.  It was fun.  I felt worse when I got home from the ER.

So, our doc at MD Anderson said to get my butt back to Texas and they would sort me out.  This sounds crazy in hindsight, but we were really scared and I was a total mess.  We were on a plane the next day.  I was wheeled through two airports in wheelchairs and given such amazing service by the crews at both locations, for the record.  I was feeling like crap, but I do remember the kindness of all the people who went out of their way to help me.

So, Brian was now with me and his wonderful cousin Kendall happens to live in Houston and picked us up and took us straight to the ER.

Where I was immediately admitted and stayed for over a week.

Sheesh.

Chemo.

Seriously.

Very long story short, I was dehydrated and could not eat because of my tumor going through its transformation thing.  They decided to place a peg tube in my stomach and that way, no matter what, I can get hydration and nutrition even if I cannot orally eat or drink.  I knew I was going to have to get one of these anyway later during the surgery part of this process, so I guess getting it early was not too horrible.  I kind of felt like a failure, though.  Like, I couldn't handle it.  I had to talk to the social worker in the hospital multiple times before I finally started to let myself off the hook a bit.  I want to handle this.  I want to be the one who stands up to cancer and fights it down and says suck it.  But, I was the one who was literally knocked to the ground and it was a hard pill to swallow for me.

But, I swallowed it, and once I stopped being so hard on myself, things slowly began to get a bit better.  I got un-dehydrated and that helped the chemo finally work is way through my system.  I got my tube and they taught us how to use it at home.  I slowly got back on my feet and eventually got out of the hospital and rescheduled my next treatment to get back on track.

The good news of all of this was that the chemo was indeed working.  My tumor is smaller (not hugely in surface area, but as far as bulging out of my tongue, that is pretty much gone).  I can eat again (which makes this tube superfluous most of the time), and the doctor redid the formula for my treatment to give me a different combination of medicines that would not have such a strong side effect on me.

I have full chemo every 3 weeks and I get a "booster" dose in between.  I had this booster before we left Houston again to head home.

Luckily, the booster side effects were mainly acne, a really bad taste in my mouth, and tiredness.  No dying this time.

I went back for full round 2 this past week and I am not going to lie - I was nervous.  It did not take 10 hours this time, more like 5 or 6, and Brian and I were on our way.   Even the shot 24 hours later was easier to handle this time.  I was feeling good.

We got back home to Mississippi, though, and all the sudden, I needed that bed again.  Bed.  It was all I could focus on the whole drive from the airport.  Again, no kids or hugs or love.  Bed.

And that is where I have been for the last 4 days.

Bed.

And this is what I believe chemo to be, for me:

Absolute, utter exhaustion of the mind, body, and soul.

The first 2 days were the worst.  I could eat and drink better this time since the spitting did not come back (thank God!!), and I had my tube, so we used that to make sure I was getting everything in and out properly.  No dehydration - yay!!

The muscle fatigue is no joke.  It would take me about 15 minutes to work up the energy to move my legs out from under the covers to even begin to sit up and contemplate walking to the bathroom.  Like, moving my arms to move the covers off of my legs and then in turn move my legs into a sitting position.  I would focus on this act for ages to get it done.

And then there was the crying.  Poor Brian.  I cannot say enough how he is a saint.  I could not handle anything that put me into sensory overload - noises, lights, smells, touch, etc.  He catered to my every whim, and I love him.  The random crying I think bothered him the most, though, and I don't blame him.  I cried about everything - why did I get cancer, I am so sorry for being crazy, the blanket hurts my leg, I don't have a desire to see the kids, I miss the kids, I hate this, my stomach hurts, etc.  All the time.  So embarrassing, and yet 100% out of my control.  Ugh.  Awful.

So here we are.  I am now past the worst of my 2nd round of chemo.  I am not 100%, but today I put on a dress and makeup and Brian took me to the Square for lunch.  I spent most of the afternoon in bed since that was a lot of energy, but my head is clear and I can walk and do things as needed now.  I have reconnected with the kids (I still need to work on some of that...), and I am alive to tell the tale.

I leave tomorrow for a quick trip to Houston for my booster (hopefully it will be easy once again), and then I still have one more round of chemo waiting for me on September 29th.  I am not going to lie - I am terrified to go through 3 days of crap like that again, but it was infinitely more bearable the second time, so I will stock up on more Hulu and Netflix movies and books and do what I can.  Hopefully, my tumor will continue to respond, at least a bit, and this 3rd round will indeed be the last and we can move on to the surgery part of this whole fun process.  :)

Sunday, September 4, 2016

Milestones

I left the house today.

That was a big deal for me.  I got dressed in actual blue jeans (I have not worn real clothes with actual waistbands in weeks) and put on a blouse and sweater, a hat, and went out to eat with Brian and Violet.  Jeremy is at a friend's house for a sleepover.

We went to a Mexican restaurant and were gone for less than an hour.

And I made it.

With only a little bit of social anxiety.  I am proud.

I ate my whole plate of food, too, which is also a big deal.  I currently have about half my tongue in working condition, and of that half, about 1/3 of the taste buds kinda sorta work, so it is interesting trying to taste food properly.  I have the feeding tube for the times when my medications and tumor leave me unable to eat, and I supplement with it daily, but I am supposed to still eat normally as well. Partially because apparently one can forget the muscle memory of how to eat (crazy) and also because it is supposed to make me feel more normal.

I have started putting the tube end up in my bra strap between my breasts.  I think it is less intrusive on my stomach there and it pulls up rather than down, which makes me feel more secure and less like the tube is pulling out (which I know it is not, but I mean, I have a tube sticking out of my stomach and it feels weird no matter what - I am trying to find what works for me).  I put on a black shirt and then a sweater on top to cover up the bulge.  For some reason, I think everyone can see it and is staring at my stomach.

I did not know what to do about my head.  We cut the hair off last night since it was coming out in handfuls, but I still actually have a ton of hair.  I did not shave it, but it is falling out all the time.  It just feels odd to me, and I of course am overthinking it to death.  I am not good at the scarf thing, and I am not so sure that is my look, but I do love baseball hats.  I have a tiny little head, so I had to search Jeremy's room and find his stash.  I have settled on the kids sized Boston Red Sox cap I bought him on my trip to Fenway years ago when he was like 2.  Funny that that is the hat that fits me.  He has other kids hats that are legitimately too large for my head,  I have lots of visors, but well, visors are not really the right kind of hat for this situation.

It felt good to have on jeans with a waistband and the tube up in the bra and the hat on the head.  I even wore my purse across my body and it did not irritate the tube placement.  Overall, I felt more human than I have in a while.

I am on methadone as my background pain medication.  I take it 3 times a day.  It makes me able to stand the tumor and the tube and the everything, but it is methadone.  Like, it is the drug they give you to help you come off of heroine.  I always feel just a little bit off center.  Like I turn my head and my vision is always a split second in catching up, you know?  It is unsettling when you go back into the real world where things move at a normal pace and reflexes are required.  I kind of felt like I was falling over a little bit the whole less than one hour in public.

We had a nice time.  No one actually stared at us, of course.  I probably looked 100% normal to everyone who bothered to glance at me, Violet was great, and our food was good (from what I could tell).

It is funny that this is my milestone.  Yesterday, my beautiful family came down to Oxford, hung out with me, we taught them to use the tube, and they gave me my "cancer cut".  Probably that was the bigger real milestone.  But for some reason, today felt bigger.  I had to do it on my own, and I made a step out, not a step in.  I think a lot of my issues have been with my own internal dialogue wanting more out of myself.  I am bound and determined to worry to death about step number 728 when I am still on step number 3.  Today, I actually focused on step number 3 and it was more than achievable.  These are the milestones I need to collect.

I need to get up each morning and put on the real clothes with the waistband.  I need to have a list of things to accomplish (today, the kids and I cleaned the kitchen floor, I worked on thank you notes, and I wrote this blog).  I need small purpose and tangible steps I can focus on and accomplish.  I need to stop worrying about what comes next and enjoy the fact that I actually can enjoy today.  Just a week ago, the idea of "enjoying" anything, or even having a clear enough mind to think straight at all, was too much to imagine.  Right now, I am sitting at my kitchen table typing with my beautiful daughter sitting next to me drawing my portrait with her markers and pad.  It is a dream.

I have a tube in my stomach, my hair is shedding horribly, I am a wee bit high, and I am fighting cancer.  But, more importantly, today I went out to eat with my family and it was not as scary as I thought.  It was a baby step of a milestone, but I did it, and I am proud.

I got this.