Music

I've typed enough for school tonight, but I feel like I need to keep typing something. It's been a while...too long.

I'm listening to a song on repeat right now, and it's come up quite frequently on my playlist lately, bringing back so many memories, I guess I need to write it down...When this song came out, Daryl was in the ICU, in a coma, intubated, and the doctors were trying to figure out a new tumor and if it was pressing on his spinal cord or pharynx. ​He was in a drug-induced coma for over a week. All I could do was sit by his bed. I started crocheting a baby blanket to pass the time...and listening to music. This song, "I won't give up," (Jason Mraz), one of the only songs I like by this artist, helped me find strength and understanding even I didn't know I had. This song made me change my attitude about Daryl and his cancer. I spent so much time trying to not be resentful toward him; it was taking a toll on our relationship, and I knew it, but I had a hard time getting past it. But that week in the ICU, being literally totally alone, just me watching him sleep...how could I be angry and resentful toward him...just a big teddy bear? Yes, he could be difficult and stubborn, but I was proving to be the same. More often than not, he just wanted to hug me, and I'm not proud to say more than a few times, I pushed him away, trying to deal with my own issues...alone instead of together. 

But that week, listening to this song (among others), something changed...I saw him as someone just trying to fight...fight for himself, fighting for us, fighting for everyone telling him what an inspiration he was to them...I started wanting to fight for us, for our relationship. I was tired of all the fighting, all the nights alone, all the heated words for nothing. That was March 2012, while in the ICU the doctors found a brain tumor. We had 15 months of a relationship that I never knew existed, unconditional love and service...for both of us. We had that in the beginning, then life happened and we lost it in the negativity and selfishness of being stressed beyond belief. But I will always remember the answer to a prayer in a beeping ICU room, and the inspiration I was able to feel. I'm so grateful I had those last 15 months and still sad they passed so quickly. 

Hug someone today...and don't give up.

This will get messy before it gets better...

I should be writing a paper for my class, but I can't get these thoughts out of my head, so I found myself here today.

Looking back, I really should have kept this blog going, if only for myself as a way to not keep inside everything that is trying to leap from me right now. 

To say "life has run away with me" right now is laughable, because where do I start? Do I pick up from my last post of 29 months ago??? I guess I could try, but that might be counter-productive. Who wants to re-live some of their darkest days? Good heavens...

Actually, those days are what have brought me back to this page. Even if no one reads this, I have it written down for myself, when writing helps clear my head and cleanse my emotions. I've realized from months of therapy over the last few years, that holding onto emotions is detrimental, and if writing helps me express my emotions, other than simply crying when I feel overwhelmed, then that is what I should do.

So, in that spirit of expressing emotions, let me start by saying how much I hate October :) Sigh...I feel better already! Now, I absolutely am in LOVE with fall and changing leaves and school starting again and sweaters and hot drinks (chai tea anyone??). But the specific month of October I can do without. I'll explain...

Halloween is annoying. I've never enjoyed it. I've also never been into make-believe, so costumes and dressing-up are equally annoying. I don't mind the cute kiddo costumes, but I hate seeing all the gory, haunting, scary aspects of Halloween. And then there is the "buying of the candy that I will just give away to strangers, just to have it all come home again from my own kiddos..." Candy, candy, candy, blah, blah, blah... Sigh...can I just cover my eyes and pretend it will all just go away?

Now, aside from Halloween (don't get me started again), there is "Breast Cancer Awareness Month." Which sounds great, but (and I'm going to complain here, so be warned) even though I realize the importance of bringing awareness to cancer (of all kinds), Cancer is once again thrown in my face and I am forced to remember everything Cancer took away from me. It is so overwhelming sometimes, to think of that list, what I lost because of Cancer, it brings me to tears. Huge tears. And October is a huge part of that. And I can't stand pink. Don't get me started on how much money raised from all the "pink" athletic items DOES NOT even go toward cancer research. Those companies have so much overhead, it's disgusting...I'll leave it at that.

Actually, every morning when I wake up and every night when I lay down to go to sleep, and every time I look at my children, every time they cry because they miss their Dad, and any time I look at anything around me, I'm reminded of what Cancer took from me. So, I don't know why I am picking on October. I guess it is because during the rest of the year, I can keep these thoughts and memories tucked safely inside the back of my mind and only pull them out when I want to hold them or even pull out the happy memories. But thanks to October and "Cancer Awareness Month" with Cancer struggles and stories are all over, my safe memories are ripped out again, where it's hard to control them and things can get messy. I don't like messy.

Now, after literally dumping my awful "Cancer" feelings all over this page, I want to leave you with those things I've received in spite of Cancer (because I normally try to be a positive person):
*Happy memories
*Two beautiful daughters
*A desire to learn 
*Empathy (and more tears)
*Perseverance
*A desire to be healthy
*Knowledge that cancer doesn't have to win
*Chemotherapy does not kill cancer
*Friendships
*Knowledge that families can be together forever
*Daryl still touches my heart
*The love of my Savior

Sigh, now I can probably get back to studying. :) Thanks for listening. I love my computer.

That wasn't as long as I thought...

Hmm, I really thought it was more like a year since I last posted...I guess after seven months I should have more to talk about than cancer, huh? Oddly enough, though, after that post, everything kind of just went down hill and didn't stop...
Long story or short story?
Short. The long one is too long now. I'll try to catch up somehow, or maybe not. Some things just need to be left in the past. There is almost too much I want to say, I don't know how to do it now.
Let's talk about changes!! That's an easier category to tackle. In February, I was finally able to change my work schedule so that I am working at night on the weekends (three 12-hour shifts). That means...I get to be home ALL WEEK!! You guys, you have NO IDEA how much this one change alone has improved my entire life! Shortly after I started doing that, I enrolled E into an online charter school and have been working with her at home. She still misses seeing her friends, but I think being able to play outside any time of day is working it's magic on her. She will dilligently work on her school work so she and L can go play at the park across the street or so we can go play at Nannie's. I have enjoyed so much having her home that I enrolled L in the school for kindergarten as well. There are lots of kids they play with in the neighborhood, so I don't worry about them making friends. But I really love the flexability we all have with their school schedule!
Also, there have been changes in our families. D lost his grandmother due to pneumonia, then I lost a cousin of mine in an auto accident. Both my sister and sis-in-law had miscarages last November. That was rough. The sis-in-law was able to get preggo agian, though, and she's due in a few weeks!
D had to have another surgery in March to remove another tumor. He started radiation therapy last week and is already feeling the tired effects of this treatment. Within the last week, though, we decided to start working with a Naturepath. Seriously, though, 5 surgeries, 2 rounds of chemo, now 2 rounds of radiation and a possible 6 surgery pending with the loss of hearing in one ear, what harm can some herbs and oils do? Might as well try it, cuz the Western medicine isn't doing such a great job :) I'm interested!
But, right now, I am looking so forward to summer my neck is going to give out! The last few days have been really warm and we have enjoyed splashing in the blow-up pool at my Mom's. Did I say how much I love my job schedule?? Beautiful days, beautiful days...

A Whole Month

A whole month has passed...wow. D is recovering from his surgery and we all are trying to adjust to his hearing loss. I now need to walk on his right side, because when I babel, as I tend to do while we walk, he can't hear me. I'm sure it wouldn't bother him, but when I ask for his opinion, I want to hear it. Problem is, he didn't hear the question. So I have to switch sides. He now puts the bird on his left shoulder, so when the damn bird squawks he isn't deafened (is that a word? Is now!).

Come to find out a few weeks ago, he has to have another surgery. More minor than the last, but apparently there wasn't enough healthy tissue removed. So, next week, he'll go under the knife again...BUT, before he goes, we are finally getting away for our Anniversary trip (that we had to post-pone because of the LAST surgery!)

Stanley, here we come!! So excited to get away and do nothing!! Then when I get back I'll post about something other than Cancer...promise :)

Cancer Surgery

D's surgery went "technically perfect," according to the surgeon (both of them). They were both happy with the results. All the margins looked good: they were able to get enough healthy tissue surrounding the tumor to safely say the tumor is removed. He was in surgery for 6 hours then in recovery for two hours. He's now resting in his room and should be released tomorrow.

He's been in SLC since last Wednesday for doctor appointments and tests and scans. I've been here in ID, holding down the fort. I opted to stay here because the girls started school last week and their first dance classes and piano classes started this week. I'm trying to keep things as normal for them as possible. D's parents are with him and we talk with each other every night, but everyone was more emotional last night. We'll be glad to get him home!

Thanks for all your thoughts and prayers. His doctor isn't sure yet if D will need more chemo. It will depend on the pathology. We should hear about that sometime next week.

Me vs You

Have you ever spent much time in a waiting room? I've been here a lot the last few weeks, and will have more time tomorrow as we meet another doctor. But right now, we're in the Radiation Oncology waiting room, overhearing two ladies comparing/contrasting/comforting each other about their loved ones' brain tumors. See? Things could always be worse...

So, as I'm sitting, contemplating, feeling sorry for myself and for D, I listen to this mother explain how she sometimes acted out her frustration, slamming her hand on a counter and bruising it. Her son is 25. The neurosurgeon removed an apple-sized brain tumor. Now he is getting radiation to his brain. The other woman, was there with her father. These two women went on comparing side effects. Then, the mother said, "Can you imagine working here? Being around all of this, every day? We at least get to leave...it takes a special person to do this."

Yes, everyone struggles with something. And gratefully there are people along our way to help us through. I have strengths, you have strengths. I believe we come into each others' lives to help each other through those times. Even including doctors and nurses. I've learned so much from working at the Huntsman Cancer Hospital. But, now I'm grateful to leave the teaching and comforting to them, and I'll worry about my little family.

But, hey, if you want something stitched up, come on over! I've got all kinds of fun stuff! :-)

To be continued...

"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." John 14:27
We should hopefully learn about the biopsy results Wednesday ... Thank you for all your thoughts and prayers. We feel them.

Looking Back

I'm sitting in a waiting room at the Huntsman Cancer Hospital in Salt Lake City, UT while D is having a bone scan. He was injected with a dye this morning, then we had to kill three hours, now he's having full-body X-rays to see if his tumor has spread anywhere else in his body. Ewing's Sarcoma is mostly a bone cancer, so if it spreads, typically it will end up in a bone, or the lungs.

While I'm sitting here, playing games on my iPad and doing online banking, a gentleman receives a call on his cell phone. He proceeds to explain to his caller, why he's waiting for his PET scan (a PET scan looks for cancer in other soft tissues and lymph nodes of the body -D had one of those too, a long time ago). He goes on to describe his chemo regimine for the next nine months...

And I rewind five years...memories flood back from the first days of D's pain, fearing the worst, hoping for the best...holding L, knowing she would be my last baby...working through the night while my children slept with D in his hospital room...laying in D's bed with him during my breaks...waiting in the many waiting rooms over the years, looking around and feeling very young...going to church alone...celebrating birthdays in the hospital...Father's Day in the hospital...rubbing his bald head...L tracing where his eyebrows should be and being confused why they weren't there...wondering why his temp always has to spike at 2am...

Then now...D loves his head shaved (so do I). He's gotten back a lot of muscle...he tires easily...he has a new liver disease...he is now insulin dependent...he sunburns freakishly easily...he has difficulty remembering things (more so than just Man Brain)...the kids love laying with him, watching movies

With the recent developments, I've wondered, Can we do this again? Well, I'm sure we can, anything is do-able...you just DO it...you wake up every day, breathe in and out, and before you know it, 5 years have passed.

I was lucky. I learned from my cancer patients, before D ever was diagnosed, what they would have done differently, looking back. So, I guess, we had a head start...Now it looks like we'll get a second chance, too...sigh...Ok, let's get going then.

Speaking of Windows...

D had his 3 month check-up with his oncologist last week: blood work, MRI and CT scans. 
They found another tumor, same side. It's growing into the ear canal, might be into the bone. He will have a bone scan on Friday and will have it biopsied, too. He meets with his ENT surgeon and Radiologist next week....

Where is that window again??

Another Care of a Cancer Patient

Thank you so much for all of the kind words of support. I truly believe that there is nothing in life that needs to be traveled alone and without support. My family is a huge support and now I have even more friends who are willing to give unconstrained support. Thank you from the bottom of my heart :)

On Sunday, I looked over at D and noticed he had shaved his goatee (?). That is a huge step; he's had that portion of facial hair since 1996 or something. Well, he shaved it off, because I asked him to, for our engagement pictures. Then, I was more than willing to have him grow it back. It just suits him and his stature. Also, I must say I prefer him bald, too. He finally shaved his head before his first surgery in January 2007 and has kept it shaved ever since. I just wish rubbing his bald head gave us more luck...maybe I should start rubbing the tummy AND head at the same time!

Anyway, my point :) I swear it's coming; I do have one.
I know exactly why he cut it...it was falling out. Seeing it gone made me stop, think, breathe. Real. Hair. Loss. You guys think I have it bad, but D internalizes everything to try to lessen my burden he said once. For him and anyone else struggling with something so internal, this is an experience something anyone will never truly understand unless it's lived. I worked as a nurse with cancer patients before I switched to the OR, so I have an idea, but it's not something I live with daily.

My heart aches for him.

Cancer cannot steal hope, as long as you don't let it.

Home Again

While D and I were having lunch together Friday at the Bistro, I was eating my delicious salad when he reached over, grabbed a napkin and dabbed his eyes. He was tearing (funny side note: E said once that she was just 'sweating out her eyes.' hehehe). He said he was going to tell me something but he started tearing up before he started. Awwww. He said he dreamt early that morning that L, our youngest, was laying on him and hugging him. He went to hug her back and woke up, and of course no one was there. He was pretty upset about it.

He's such a social guy. He doesn't like to do things by himself. When we're not together, unless I'm at work, he likes to be on the phone talking with me, or other friends if I can't talk. He'll do anything if I do it with him! And, he loves his kids and loves to hug them and hold them and play with them. So, when he's alone at the hospital, he says night time is the hardest. Not only is he in a small bed by himself, but no one comes and jumps on him in his bed to give him a good morning hug :)

D came home from the hospital late Friday night. He could have stayed the night and gone home Saturday morning, but once he made the suggestion, I agreed he would sleep better once he returned home. Plus, the girls were already staying with his sister for the night. So, we came home and slept in until 10am. It was heaven!

Now he's resting and so are the children...and in a way, so am I :)
Have a nice week, everyone!

By George! I think I've got it!!

So many people ask what they can do for me, for us, after they hear about the chaos that is our lives. I honestly don't know. Chocolate is always a good choice, but even I have the occasional chocolate limit (stress on occasional). Do you really want to do my dishes and laundry? I didn't think so, and I don't blame you :)

Sooooo, something hit me the other night. Let me explain first.
Cancer patients occasionally require blood transfusions: platelets, plasma or even the whole unit of blood. Chemotherapy kills cancer cells, but it also kills blood-producing cells. So, after a round of chemo, the patient's dead blood cells are cycled out of the system, but it takes a few days for the bone marrow to catch up with the body's need and new demand. Low red blood cells = low energy (and lots of other side effects, but I'm keeping it simple). With D's first course of chemo in 2007, he had 3 blood transfusions over the year, I can remember. There might have been a fourth, but no matter. Point is, with 3 transfusions, that's 6+ units of whole blood. There were also, for D, 4+ transfusions of just platelets (when his blood clotting factors were low).

Back to my point
Here's what any one of you can do to help:
Donate Blood!! You can even get paid to donate plasma, but the blood companies can get plasma when they spin down the whole blood. There is, however, always a tremendous need for both.

There are Red Cross and ARUP blood donation centers all along the Wasatch Front, or you can find one near when you live. This way, you are not only helping D but a whole community of Cancer patients, young and old! ARUP is the main blood donation supplier of Huntsman, Primary Children's, Shriner's and UofU hospitals here in Salt Lake City. What a great way to help!!

Awesome! Thank you so much!! If there are any questions, just let me know.

How to Take Care of a Cancer Patient

Welcome to the Huntsman Hotel.

That's the nickname patients and family have given this amazing place. It's a beautiful and modern facility; a place where Jon Huntsman, Sr, imagined would help the cancer patient and family forget they were in a hospital and would encourage the focus on healing. You can read more about him and his efforts here. A truly amazing man.

I dropped D off here today, on the Oncology Inpatient Unit. He'll be there, having a continuous infusion of chemotherapy with 3 different drugs until Saturday. I held myself together pretty well, but almost lost it when the clerk took us to the VIP suite. It's been two years since I've worked there, but we were met with hugs and well-wishes. I had to leave to go to work, but I know he's in good hands. I'm bringing the children up tomorrow after school so we can have family time. Thanks for all of the kind words, thoughts and prayers for our family. He and I will have dinner together today, at least :)

Get the flash player here: http://www.adobe.com/flashplayer

Made With Love

I know what you're thinking: "Support Our Troops? Really? I didn't know Rachel knew anyone in the Military..."

Okay, maybe you weren't thinking that. I do know people in the military, and I love and support the entire military, but that's not what this is about today.

The Yellow Ribbon also has personal significance: it is the ribbon for Sarcoma, like the Pink Ribbon is for Breast Cancer. Go here for more information on ribbon colors.

June is also Sarcoma Awareness Month. I didn't mention it last year because I was hoping this was all behind us. Alas, that is not to be. D found out last Friday that he has another Ewing's Sarcoma tumor, in the same area where the last one was removed in January 2007. We won't know for a few more days what exactly will happen. He's not excited about more chemotherapy or radiation (who would blame him). It's been a blow to both of us. We were hoping he'd make it past the 5 year mark so we could increase his Life Insurance Policy. Oh, did that sound sadist? I didn't mean it like that :)

Well, this is a blog about cancer, right? I guess I need to kick up the "How To Take Care of A Cancer Patient" Column. I'll keep you updated. And Thank You to those who have already expressed their love and concern and thoughts and prayers with us. I know that's what helped us through the first time and we will get through it again....

Another Look at the Pitty Party

It's been a while since I've posted anything about cancer (or I guess, how cancer has been a part of my family) for some time now. Now I'm curious...this was my last post about The Cancer in our lives. Read and enjoy, but join us back here for the rest of the discussion. :)

Good and thank you for returning! :)

Now that everyone is caught up, I think I need some mental time with the concept again (deep breath) and that time is now, because I am sitting here...with time...and thoughts.

I think I purposefully haven't posted anything about The Cancer because it makes it seem too real...but it is real, isn't it? I can't just will it out of his life (who is also a part of mine). I guess I have to deal with it sometimes...only on My terms

**Hi. My name is Rachel and my husband was diagnosed with Cancer in 2007. He spent that year in and out of the hospital having 10 week-long rounds of chemotherapy every 5-6 weeks then had 30 days of radiation treatments. I started working full time in order to support the family and have insurance. Since February of 2008, we go through an emotional roller coaster every 3 months as we wait for MRI results. We look at every bump, worry about every pain, and I'm sure he looses more sleep over every detail, wondering...Is this it? Will it happen again?**

D had a thyroid scare last week and it will be biopsied next week, and I'm not too worried about that. But, in the same area as his first tumor, there is a "mass" that has been hanging out, soaking up contrast and dye and white cells for almost a year and has recently decided to enlarge itself. We've known about it; the doctors are 'watching' it. We found out this morning that it's gotten bigger. The oncologist wants to biopsy it; the surgeon wants to cut the damn thing out. We are waiting for the thyroid biopsy to see if parts of it need to be cut out too then do them both together.


Now what? Now what you ask? Dunno, I could make up a lot of things :) but we just have to wait. Then, of course, I always over-react and things are never as bad as you think it will be...except for that one time I told D, "Settle down, it's not cancer. What are the odds, I mean, really. People have head aches all the time. I love you; here's some ibuprofen." THAT ONE TIME.

In all seriousness, though, it probably will be nothing; an overactive thyroid, a fistula that is trying to start and just happens to be draining in that very spot in his neck...random collections of lymph nodes that are in the wrong place...really, nothing.
And now we have two weeks to think about it.

Thanks for letting me vent my feelings. Sometimes simply acknowledging the feelings allows them to be properly managed. And by properly managed I mean thrown into the air, twirled, caught, then tossed back into the corners of the mind where they can be once again filed for a fitting "When I have a spare moment" moment.

Now, on with life. Dinner is waiting and I believe I hear E reading a story to her little sister.

Slow Dance

Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day
On the fly?
When you ask, How are you?
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child,
we’ll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say, 'Hi'
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.
When you run so fast to get somewhere
You miss half the fun of getting there
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.

Anonymous child fighting the losing battle with cancer
Her doctor is Dr. Dennis Shields

(found this in some of my husband's files from 2007, his year-long chemo and radiation experience)
We lost a good friend in 2008 after a long battle with an inoperable brain tumor. After all that, reading this little poem really makes me stop and take a breath...

Good News/Bad News

Good News:
The PET scan was "stable with no evidence of metastatic disease."

Bad News:
Don't know what the bump is, but as long as it doesn't get any bigger or painful, the doctor will watch it.

What Now:
Life as usual :) Thank you all so much for your concern and thoughts!!

To Add To Any Previous Confusion...

...Sorry for any confusion. Daryl has another "lump" only centimeters away from the original surgical site. He is having a PET scan today to see if this new "lump" likes radioactive sugar. Cancer cells take in more sugar than any other cell in the body (because they are reproducing so rapidly). So, after the body is given the radioactive sugar, it is "scaned" and any highlighted areas are problematic.

Since it's Friday, we won't know anything until the middle of next week. Thank you all so much for your thoughts and prayers! More info as we get it...

One of THOSE days

First, I just have to say, "I willingly saw Star Trek the Saturday before Mother's Day, and I thoroughly enjoyed the entire movie, except what the heck was with the green girl and who knew Spock had a thing with Ohura!!" No, I don't speak Romulon (I don't even know if I spelled that right) and I don't have any Star Trek costumes. BUT, thanks to my loving mother, I saw every single one of the older Star Trek movies. So, in a way, that was a tribute to my Mother :) You're welcome, Mom xoxox

Anyway, have you ever found a lump in your neck and never realized it was there until a doctor asks, "Hey, does this hurt?"

Hu? Didn't even know it was there. Too bad, cuz the radiologist saw it on your MRI last Friday.

Oh. Bummer (sigh) PET scan to follow soon. We'll let you know when we know more.

Race for the Cure

Thank you all for your support! Our "team" from Huntsman was able to raise over $5300.00 to go toward Breast Cancer research. What a great experience! Our team t-shirts were made by a cancer survivor:

Stupid Ideas 101

1. Run with Scissors

2. Play with Matches

3. Skip the Mammogram

Stop Cancer Before it Starts

I ran for:
*My Grandma, who is still alive today, going on 6 years survival after being diagnosed with Breast Cancer.

*A friend's friend who died after struggling with Breast Cancer

*My girls, so the research will be able to benefit them

*The people I love, and have lost, through any type of Cancer!

*Huntsman Cancer Hospital, because I love that institution

*Myself. Because I can. And for that I am truly grateful.