"The C Word"

I have to apologize for taking so long to write another post.  I know many of you are very concerned and look for updates of how we're doing.  It's just that between visitors at the hospital, and writing blog posts, and going to doctor's appointments, and trying to move back home, and being there for the kids, there has been a lot going on!

I'm trying to get back to some normalcy for the kids sake, but I'm still tired and weak, and I crave a nap at least once a day. The good news is I am writing this from the comfort of my bed.

Yes... I'm finally home :)

It's hard to know what to focus on here.  I need to work on getting my speech and vocal chords working again, and I want to improve the movement in the left side of my face. I want to increase my strength and stamina as fast as possible, and get back to my old workout routines.

I also feel the need to do research and look into alternative treatment options, but I really need to get my house organized so it will run more smoothly.  My kids are old enough to fill in for me, but I have to have everything in it's place if I want to be able to direct and orchestrate everything from my bed.

I've decided that I'm going to need to establish a whistle signal for each child.  I am trying to avoid having to shout, so as not to put any stress or strain on my healing brain, but my kids are always so far across the house that I can't get their attention when I need their help.

I think I'll make them start calling me "Captain" as well. 

So now for the major news. On monday, we had a visit from our new oncologist, Dr. Rich. His visit was not the happiest we've had.  He told us the biopsy results came back early.

It's cancer.

A malignant tumor - stage 2.  I wish I had known this in advance, but apparently stage 4 is the worst,  stage 1 is only seen in children.  It didn't feel like it at the time, but stage 2 is considered a very favorable diagnosis in the cancer world.

All we heard was "cancer" and "not curable."

We were shaken up... big time.  Before the doctor had even finished delivering the survival statistics for someone with a "stage 2 astrocytoma," the door flew open and in ran the kids.

Joe and I hadn't had time to share our reactions with each other or decide what to tell the kids, so Joe took my sister Maren and my Mom into the hallway and gave them a quick briefing, while I tried to act normal in front of the kids.  I could tell Joe was feeling hit really hard.  He had a look of disbelief and a little anger on his face, shaking his head side to side.

I felt the same way I felt when I first found out about the tumor.  Not fully comprehending the weight, but believing that somehow it would all be okay. I wanted to reassure and comfort Joe.  We finished up our visit with the kids, who have grown increasingly loving and cuddly with each visit.

We had just received a delivery from one of Joe's clients "Younique."  They had sent each of our kids a ridiculously soft stuffed dog with a sweet tag on its neck, with a personally written message to each child about hugging the dog when they missed their mommy.  It was the perfect gift at the perfect moment! See the picture at the top of this post.  There were other treasures in the bag as well.  Thanks Lindsay & crew!  Everyone has been so generous and are just showering us with affection, full-time!  We may have a few more surgeries in our future when we have to get these stuffed animals removed from our children's clutches.  They can't be seen without them!  The kids are receiving gifts at school, and one of the owner's of DoTerra, who lives in my sister's neighborhood, delivered a box containing 24 bottle of essential oils, including NINE bottles of Frankincense!  Talk about generosity!  We are overwhelmed!

Once the children left the hospital, Joe texted his family and asked if they could come to the hospital to hear the biopsy results.  I can't believe how fast they all showed up!  I want everyone to know that I understand that you all still have busy lives and jobs and children with schedules. You have communicated to me that  I am an important priority in your lives and I feel supported, but I don't expect you to be able to drop everything and show up at a moment's notice.  We all need to keep our worlds spinning somehow.  Please know that I understand that.

So that was Monday...

Tuesday morning, we met with one more new doctor, our radiology oncologist Dr. Clarke. This was the final step before we could finally check out of the hospital.  Unfortunately, the news got a little worse again when he said that there was a possibility that the tumor could be stage 3 instead of 2.

After we saw him, we packed up to go back and stay at my mom's.  On the way out, we stopped by my Dad's hospital room - just around the corner where he was recovering from back surgery performed by our "family surgeon."  I'll have to talk to Dr. Reichman about getting a family discount. 

We may need to use it when we have the stuffed dogs removed.

 

Tuesday night I attempted to tackle the kids homework routine.  I was thrilled to be awake and feeling well enough to even consider doing this and, for the first time, felt like homework could allow for some good bonding time instead of just being a time-sucking nightmare.  I'm going to have to learn to enjoy the aspects of motherhood that can be done in the reclining position.  But, for now, any mothering is enjoyable and I consider it a blessing.

Wednesday morning, there was more bad news.

We had another appointment with the oncologist who told us that they had held a doctors conference that morning where multiple doctors reviewed my case and were now leaning toward a stage 3 tumor instead of a 2.  They want to send the tissue samples to the Huntsman Cancer Center for some more advanced tests to try to get a more definitive answer.  I need everyone to pray that the tests will show favorable results, and that we won't run out of tissue before they make the necessary discoveries, as each test uses up more of the biopsy sample.

Regardless of the outcome of these tests, my treatment will begin in just over a week.

Radiation and Chemotherapy.

Walking back through the waiting room of the Cancer Center, Joe and I were arm in arm. I turned to him and declared "Let's just stop coming to these appointments... the prognosis just gets worse and worse."  We looked at each other and busted up laughing, which probably looked weird, considering where we were.

It has been difficult transitioning into looking ahead at the future of cancer treatment, and all that entails.  I'm still on cloud nine from how well the surgery went!  I just want to continue feeling this gratitude and trust in my heart and avoid starting down another path of fear and worry.

That brings me to an email I got from my sister, Maren.  She included a section of  a talk given by Elder Jeffrey R. Holland in 1997 entitled, "Come Unto Me."  This talk is so deep and profound and so perfectly encapsulates all of my feelings that I want to share part of it on here.  Warning: read slowly and allow for moments of pondering.  It starts off talking about the miracle of Jesus feeding the five thousand:

"After Jesus had fed the multitude, he sent them away and put his disciples into a fishing boat to cross over to the other side of the Sea of Galilee. He then “went up into a mountain apart to pray” (Matthew 14:23).

We aren’t told all of the circumstances of the disciples as they set out in their boat, but it was toward evening, and certainly it was a night of storm. The winds must have been ferocious from the start. Because of the winds, these men probably never even raised the sails but labored only with the oars—and labor it would have been. We know this because by the time of “the fourth watch of the night” (Matthew 14:25)—that is somewhere between three and six in the morning—they had gone only a few miles. By then the ship was caught up in a truly violent storm, a storm like those that can still sweep down on the Sea of Galilee to this day.
But, as always, Christ was watching over them. He always does, remember? Seeing their difficulty, the Savior simply took the most direct approach to their boat, striding out across the waves to help them, walking on the water as surely as he had walked upon the land. In their moment of great extremity, the disciples looked and saw in the darkness this wonder in a fluttering robe coming toward them on the ridges of the sea. They cried out in terror at the sight, thinking that it was a phantom upon the waves. Then, through the storm and darkness—when the ocean seems so great and little boats seem so small—there came the ultimate and reassuring voice of peace from their Master. “It is I,” he said, “be not afraid” (verse 27).
This scriptural account reminds us that the first step in coming to Christ—or his coming to us—may fill us with something very much like sheer terror. It shouldn’t, but it sometimes does. One of the grand ironies of the gospel is that the very source of help and safety being offered us is the thing from which we may, in our mortal shortsightedness, flee. For whatever the reason, I have seen investigators run from baptism, I have seen elders run from a mission call, I have seen sweethearts run from marriage, and I have seen young couples run from the fear of families and the future. Too often too many of us run from the very things that will bless us and save us and soothe us. Too often we see gospel commitments and commandments as something to be feared and forsaken.
Let me quote the marvelous James E. Talmage on this matter:
Into every adult human life come experiences like unto the battling of the storm-tossed voyagers with contrary winds and threatening seas; ofttimes the night of struggle and danger is far advanced before succor appears; and then, too frequently the saving aid is mistaken for a greater terror. [But,] as came unto [these disciples] in the midst of the turbulent waters, so comes to all who toil in faith, the voice of the Deliverer—“It is I; be not afraid.” [Jesus the Christ, 3d ed. (Salt Lake City: The Church of Jesus Christ of Latter-day Saints, 1916), p. 337]
Brother Talmage used there the word succor. Do you know its meaning? It is used often in the scriptures to describe Christ’s care for and attention to us. It means literally “to run to.” What a magnificent way to describe the Savior’s urgent effort in our behalf. Even as he calls us to come to him and follow him, he is unfailingly running to help us.
Finally recognizing the Master that night, Peter exclaimed, “Lord, if it be thou, bid me come unto thee on the water.”
And Christ’s answer to him was as it always is, to all of us: “Come,” he said.
Instantly, as was his nature, Peter sprang over the vessel’s side and into the troubled waves. While his eyes were fixed upon the Lord the wind could toss his hair and the spray could drench his robes, but all was well—he was coming to Christ. Only when his faith and his focus wavered, only when he removed his glance from the Master to see the furious waves and the black gulf beneath him, only then did he begin to sink. In fear he cried out, “Lord, save me” (Matthew 14:28–30).
In some disappointment the “Master of ocean and earth and skies” (see “Master, the Tempest Is Raging,” Hymns, 1985, no. 105) stretched out his hand and grasped the drowning disciple with the gentle rebuke “O thou of little faith, wherefore didst thou doubt?” (Matthew 14:31). (See also Frederic W. Farrar, The Life of Christ [Salt Lake City: Bookcraft, 1994], pp. 310–13.)
Jesus is the Christ, the Son of the living God. This is his true and living Church. He wishes us to come unto him, to follow him, to be comforted by him. Then he wishes us to give comfort to others. However halting our steps are toward him—though they shouldn’t be halting at all—his steps are never halting toward us. May we have enough faith to accept the goodness of God and the mercy of his Only Begotten Son. May we come unto him and his gospel and be healed. And may we do more to heal others in the process. When the storms of life make this difficult, may we still follow his bidding to “come,” keeping our eye fixed on him forever and single to his glory. In doing so we too will walk triumphantly over the swelling waves of life’s difficulties and remain unterrified amid any rising winds of despair."

Concerned friends and family members want to know how I'm coping with this.  This is exactly how I feel.  I feel like He is in this trial.  I am not going to run away from it, or be afraid of it.  I am going to embrace it and glean all of the learning and love and comfort out of it that I can.  I do feel sad and concerned for my family, especially my children, but, luckily, when God does His work, it works out good for everybody!

I trust Him so much, that I just believe that either I will be miraculously healed or, if my family does lose me, they would be supported so much that they would still be able to have lives of peace and happiness.  That's all that really matters.  Those are both happy endings to me.

Earthly life has never been certain or safe.  Our only hope for being an eternal family is to stay faithful all the way to the end of our lives. That is what I ask from my children.  A commitment to cling to your testimony like your life depends on it, because it does.  If each of us do our part, nothing can separate us!

Joe and I were married in the temple, and therefore sealed together with our children in God's eyes for eternity!  There is no greater blessing and nothing is more worth our time and efforts in this life!

Telling the Kids...

Wednesday after school, we knew we needed to update the kids on the situation before we put out any more blog posts.  We brought them into our bedroom, and told them we needed to talk about something serious.  Joseph said, "Does that mean bad?"  To which Mia replied, "Yes, that's bad."  We told them about the cancer and the upcoming treatments that would cause me to be sick in bed a lot of time.  Mia started crying.  She exclaimed, "We're never going to have a normal life again?!"  I tried to reassure her that we would and now that is going to be my focus.    Making sure I spend quality time with each of them and that we figure out how to run our household so that it feels like it used to feel are two things that are constantly in my thoughts.  We will need everyone's help for quite some time, but the sooner we can get back to being an independent family, the better everyone will feel.

Joseph exclaimed, "You mean we're never going to get to go roller skating again?!"  Mia shouted, "Is that all you're worried about?!"  I think Joseph was envisioning me being sick and in the hospital for the rest of our lives and never getting to do any fun family activities together ever again.

I can't wait to post a video of us going roller skating.  Give me about four weeks.

And a helmet!

To Mia, the biggest blow is feeling like we won't be spending time together anymore.  She is one who really craves late night talks and heart to heart sharing and girls nights.  I feel so determined to continue to fill these needs for my children, there is just nothing that will stop me.

Elyse just clutched her pink dog and cried.  Poor, angel baby!

We've all heard horror stories about the suffering of chemo and radiation patients.  Pray that I will be emotionally and physically strong enough to endure the suffering necessary to keep me here with my children as long as possible.  I haven't experienced the treatments yet, but from my current perspective, I intend to do everything in my power to be here for my children as long as humanly possible even if it means great suffering and pain.  Children don't stop needing their parents even when they grow up.  What would I be doing right now without my parents and my husband's parents?  I have every intention of being ninety years old and still coming to the rescue for my children when they need me.  That is my calling in life and I have no intention of being released from that calling.

I can't believe that I'm not going to find some way out of this.

Being at my mom's was an improvement from the hospital, but there's nothing as familiar and comfortable as home.  So, on Wednesday evening, we decided to pack up our kids stuff and see if we could make it work at home.  We had a fun and delicious lunch with Maren since her birthday, the day before, had been totally ruined by my constant demand for drama.  Here's a clip of when I got my party favors after the party:

It feels good to be home, but I am noticeably weaker, for sure. The meals we've been receiving have been a life saver!  It took me ages to get the kids unpacked last night.  I knew that I wouldn't be able to get them off to school on time without having some sense of order in the house.  Trying to clean up feels pretty tedious.  I feel like I'm moving at about one mile per hour. I'm used to racing around the house ,whipping it into shape at high speed.  I may be the tortoise in "The Tortoise and the Hare" but we all know who comes out on top in that story! I feel like things will only improve as I continue to recover and we get a more established routine of how to make everything work.

There's no way to foresee how the treatments will go.  We have an appointment to meet with Dr. Coleman at the Huntsman Cancer Center in Salt Lake next Tuesday morning.  Hopefully we will also get the results from further biopsy testing they are doing as well. We should be able to get a better idea of the treatment plan then.  For now, it's looking like radiation for six weeks paired simultaneously with chemo.  I don't know how bad that will be.  I don't see any point in worrying about it now.  I know God will help me get through it and I know my friends and family will be there to offer all the support I need when that comes.

I got the kids ready for school this morning all by myself!  I feel so proud!  My sleep schedule is pretty messed up right now, so waking up wasn't too bad.  That's usually the hardest part for me.  We tried to have as many things done the night before as possible.  The kids were helpful and the food Grandma had sent home with us was just right.  I'm usually trying to get them to eat things I consider healthy, while my mom just gives them what they actually like.  They cooperate so much better that way. I was thankful for white bread this morning.  Joe drove the kids to school.  I came along for the ride just to be part of it.

As soon as we got home, Joe handed me my laptop with a look like, "Get back to work."  I know I need to be more consistent with my posts, but I hope you'll all understand that sometimes that isn't the priority.  I may just make some shorter Facebook status updates to fill in the gaps.

Then, Joe and I got into a not so pleasant conversation.  He feels like he needs to hope for the best, but plan for the worst.  He wants to be able to have some difficult conversations but it's hard because he's trying to be sensitive to my feelings.  I'm a little more in la la land, thinking it's all going to turn out great somehow.  It's pretty emotional to have to keep talking about such serious stuff all the time. 

Prayers still needed and much appreciated!  Love you!