Dear Friends and Family

This is Valerie again, my family and I have appreciated feeling your love and prayers on our behalf. It feels good to be lifted and supported throughout this experience. This post will be the hardest to share since the news of my mom's diagnosis.

After the last CT scan decisions of what to do next faced us like a dead end street. There was one last treatment option, a targeted therapy, technically not chemotherapy. Weighing the pros and cons of the treatment, at first it seemed automatic to just get started on it, because what other choice did we have? Well, it comes down to quality of life. We knew in the beginning this was terminal. It is not about chasing treatments, it's about making my mom feel as comfortable and as pain free as possible while enjoying time with family and friends. With this last treatment came side effects that would have given her more bad days than good. It was not worth it to continue treatment, so she has stopped them. We feel this was the best decision! With nothing else to be done she is now on hospice.

I remember getting the call, I was looking out of my bedroom window. Everything went blurry for a minute and my heart sank. As I was holding my 2 month old son, I felt so sad. A kind of sad I have never felt before. A flood of memories came over me and clashed with moments I had envisioned in the future with my mom. After it sank in, that she will be passing soon, I felt an overwhelming sense of strength and peace. I feel so loved by God and I know He wants me to be happy. I know without a doubt that she will still be part of my life. She will be with me in spirit and I will see her again. I love her so much.

Change is in the air

I woke up early this morning, to head into Seattle for chemo and the air was crisp and cool. I love the Fall and I think it has arrived. Time to get out my boots and sweaters and quilts (well, they're always out) and jackets!

I had a CT scan on Friday and was anxious to find out the results of that. it had been scheduled for the 27th but they bumped it up because my liver function tests had been running high over the pasts few months and they continued to climb. The blood work from today showed they are a little better than last time but still high. The CT scan showed that most everything was stable but the tumors in my lungs once again were growing a little. My cancer markers doubled to 404 from two weeks ago. So the doctor gave me a choice. I could continue the same chemotherapy and see if we could squeeze out a few more good rounds or go ahead and change chemos which was already going to happen sometime soon. He said there is no wrong answer and that sometimes there is a very clear line when it can be determined that the chemotherapy is no longer working and you move to the next one. But in this case it wasn't so clear. Things are kind of going up and down.

After weighing the pros and cons we decided to change chemotherapys. One thing that helped me make that decision is when they told me that we can come back to this chemotherapy later if we need to. So after my visit with my sister, I will come home and begin a new chapter in chemotherapy. It will be a matter of getting the dosage adjusted to the right amount and adjusting to the new side effects.

Just as I can feel Fall in the air I have felt this coming and hope that the miracle continues.

It's a miracle!

I know that I don't blog enough for a lot of you and I'm sorry. Keeping friends and family updated is important to me. Just consider that no news is good news. :)

I've been thinking lately and wanted to boldly share my thoughts with you...
Since the very first minute of the very first visit with my oncologist he told me straight up that he could not cure me... that this illness is terminal. It took some time for that news to really sink in and to be able to accept it and say it out loud. I know it's not a comfortable conversation to have and people want to tell me "everything will be okay" and "there is always hope" and  "miracles happen".  I appreciate the support and the optimism and I agree wholeheartedly. I also appreciate the many concerned and caring people who have sent or offered information and products that may "cure" my cancer. The amount of information given to me has been overwhelming. Everyone knows somebody who was cured by this method of treatment or that and I know it is their love and concern and desire to help that prompts them to offer these things.

The last thing I want to do is to spend my time desperately seeking a cure or always wondering if one method is better than the other or doubting my choices. I chose the path of chemotherapy.  I have come a long way since January 2012. Although chemotherapy has it's yucky parts, I have energy and am able to do a lot.  Everyone tells me I look great and for the most part I feel great too. I see the looks on the nurses faces when they ask if I am in any pain and for almost a year and a half I have said no. I have seen a look of surprise, excitement, and almost disbelief on my doctors' faces when I tell them how well I'm doing after 19 months on my first chemotherapy regimen that was only supposed to last at most 12 months. I haven't had to have a meal brought in for over a year. I have traveled to see family and friends and expect to travel some more.  What ever happens down the road, I know I'm living a miracle right now.  Miracles happen! My hope is that this miracle will last until I have done everything that needs to be done. There is always hope.

I just want to say that I am at peace with my choices, mostly because I believe that it's not in my control. I'm in God's hands and His will is mine. Everyhing will be okay. If I have more work to do here then I am confident that He will give me the time. When my time is up it is because I have done what I came here to do. It's as simple as that really.

Good News and News

The good news is...Valerie followed me back to Seattle for what started out as a two week visit and has now turned into three! She came out to help with putting the house back together from the water damage. The new floor is in, and GORGEOUS! We all love it! Downstairs is all painted. The bathroom is nearly complete. It feels like a new house downstairs. Thanks to friends who came to help us in such stressful times. We appreciate the support and feel very loved!

Now for the news. After the last four rounds of chemo my numbers have dropped to 345. Today was my CT scan and we went over the results with my oncologist. The CT scan showed that the tumors in my liver and thyroid are stable...not growing, but the tumors in my lungs are growing and multiplying. He wants to be 100% sure that the new growth is cancer so I will be going in for a biopsy in the next couple of days. If it is not cancer, we will continue the treatment I am on now, folfox. If it is cancer, the chemo regimen will change, to folfiri. I qualify for a clinical trial. It will be an addition to the folfiri. Some of the side effects with the new chemo will be nausea, anorexia, acne rash and no more neuropathy (cold sensitivity and tingling in hands/feet).

It was expected that I would stop responding to the folfox at some point and would be switched to another chemo. There are four chemo regimens. All that I have done up to this point has been the first. If we switch, it will begin the second. There is a 50/50 chance that the clinical trial could be a better treatment. We have the choice to participate. I feel it is worth a shot.

One Day at a Time

Two days after getting back, my mom went in for chemo. She explained about her pain during her trip here and the Doctor decided to change up some of the meds and put her more in control over which at home meds she needed. During the infusion she broke out in a red rash. After stopping the chemo, the nurse talked to the doctor,and gave my mom Benadryl then waited a half hour. When she started the chemo again, it began with a slower drip and gradually built up to the normal flow. She was fine, but the Benadryl of course made her sleep. We'll see how she handles the side effects this week! Now that she has shown hypersensitivity to the oxaliplatin, she will need benadryl, or something like it, each time she goes in for chemo. The nurse said this hypersensitivity doesn't happen when you first start chemo but down the line several rounds later. Your body finally says, "Ok! I've had enough, I don't like you" and the Benadryl calms it down.

It's a watch and see situation. She may tolerate it just fine with Benedryl or something similar or she may just get to the point of not tolerating it anymore. Her numbers have gone down to 365, so they are moving in the right direction. Also, her white blood cell count was low so they gave her a shot to boost her white blood cells and told her to expect to be in pain for a couple of weeks.

In other news, I am hearing the new wood floor is beautiful! It was hard for my mom to be 3,000 miles away  while they laid the new floor from the water damage. (See here) I still can't believe that happened. A special thanks to all those who helped my parents with that. It is so comforting to know they have incredible friends who love them and would help out any way they can!

Everything works out one way or the other. Life is not suppose to be easy, of course. I know where to find peace. I know I am loved and hard things are for my growth. For all the 'surprises' in our lives, here's to taking one day at a time and getting good perspective from it.

East Coast Visit

When my Mom was on the pill form of chemo, she was feeling pretty good and around Christmas time we planned a trip for her to visit us in Charlotte. We planned for March, a big part because Wicked was coming to town. It was perfect, she booked plane tickets and play tickets and the countdown began. A few weeks before her coming out, she had stopped responding to the pill and needed to be put back on the infusion form. This makes my stomach turn because, well, for all sorts of reasons, but mainly because I knew it meant she was not going to be living life as comfortably anymore. The physical side effects of this treatment are harsh and seem to pile on.

Luckily, she was still able to come out. We had her for two whole weeks! Her sister also lives in Charlotte and my brother, Corey, lives two hours away. My mom got to triple dip!

There were two treatments before she came. The side effects are creeping back in her life. She had one bad day, her second day here. She had very bad pain, the exact same as in the beginning when she was prepping for her colonoscopy. We thought she might end up in the ER again. Things calmed down and she was good for the rest of her trip. Her hands and feet are peeling a lot and Corey found these really cool socks/gloves that are aloe/olive oil coated which are good.

She was surprised how much she liked the south and I had a great time showing her around. We went to the Columbia Temple, Farmers Markets, Latta Plantation, bakeries, southern restaurant to eat fried green tomatoes and shrimp and grits, lots of cute shops, parks, haircut, train ride, went to see OZ with Corey and Wicked with Lauana, and lots more!

It sure is quiet now that she's gone...

Chemo stopped due to hand/foot syndrome

10 days into round two of my chemo pill and I have the hand/foot syndrome again. They have already reduced my dose due to this side effect. Now they have me stopping all further chemo for this round and I have a week off next week. I guess they will reevaluate when I go back in to them. Maybe they will reduce my dose again. I feel so good other than my painful feet.
I am currently enjoying a visit from my brother and his family. Unfortunately, my feet started hurting the day they arrived so we can't go do much of anything because I need to stay off of my feet. Sorry, guys.
But I'm glad I can enjoy the blessing of family and feeling good.

Feeling Good

I've had people ask me to update the blog more often. I'll try to be more regular with my enteries.
I'm happy to let you know that I feel good. I am quilting again and working on various small projects. I still have not developed the ability to pace myself so I tend to wear myself out quickly but I do feel good other than getting really tired rather quickly. My cancer marker continues to drop, it is now at 560.
The first round of oral chemotherapy was interesting. At first I could not keep my balance which is not even a side effect of this pill. I experienced a mild case of the hand foot syndrome and so my dose has been adjusted beginning with this round which began yesterday.
I am looking forward to going with the young women in our ward this week on their high adventure. We will be white water rafting! So excited!

More Than Half Way

This is at Mom's first chemo treatment after her half way mark.

View from the waiting room.

View down from the waiting room.

Walking, outside of SCCA

Dad and I went with her this time and this was our view from her room. 

Everything went well that day.

She had another blood draw yesterday,

(like she does every Friday before a chemo treatment)

and is going in on Monday for another treatment.

Only a few more treatments left.

Results

We just finished meeting with the doctor here at SCCA. He went over the results of the CT scan. We have two months of chemo down and two more to go. Her tumors have shrunk an average of about a third of the size, or less, of the original. The large tumors in her liver have only lost only about 2-4mm, which is not nearly as significant as we had hoped. They are still fairly large, but they are at least responding! The doctor was pleased with the results. He also said surgery is not likely after the treatments. It would not help because of how wide spread the cancer is. After two more months of chemo she will switch to a pill form that is more a targeted therapy than a chemotherapy, that will cut off the blood supply to all of the tumors. The pill would still help shrink the tumors. It's looking like the tumors will never completely dissapear, but there is always hope! It is good news that the cancer is responding to the treatments. Just because the tumors did not shrink in half does not mean there isn't hope for there to be more progress. Only time will tell and we pray continually we will pull through this.
Her cancer counters went from 16,000 to 3,600.
We are currently in the waiting room for her next chemotherapy....

Round 4

I'm sitting here in the middle of my 4th chemo with my chemo fanny pack around my waist.
The side effects that happen every time in the beginning are going on. Cold sensitivity-I can't drink or touch anything cold for several days. Facial pain when I bite into something-it lasts only a few seconds but is not very pleasant. I'm starting to have vision problems. I don't know if it's strictly the chemo or my RP or a combination of both. I'll have to see if my eye specialist will talk to my oncologist to see if there is anything that can be done. Sometimes when I rub my eyes or sometimes randomly my vision will narrow to a tunnel vision view with everything blackened but a small narrowed view of what I'm looking at. It only lasts a few moments.

But the good news is  my cancer marker has dropped to now 4000 from the original 16000 which means I am responding to treatments! I think that is an amazing drop after only 3 treatments. I am feeling better, stonger, and more in the mood to start back into some small projects. This is good. I am thankful.

Hawaii and other updates...

This past round of Chemo brought with it some random side effects. One was that my feet started to really hurt in the middle of the night. The next day they were all red and it hurt to walk. I wasn't sure what it was but after talking to the nurse she said it was related to the Chemo and that they might have to ajust the treatment next time.

Eddie and I were surprised last week with a trip to Hawaii!!! A collection was made and several people from Eddie's work donated money to get us to Hawaii, including plane tickets, a place to stay and all expenses! What a sweet and generous gift! We had a great time. It was nice to see the sun, and just get away. Thank you to everyone who made that possible.

We continue to see blessings in our lives and consider our friends and family to be among the biggest. The love and concern that is expressed by so many touches my heart-even from strangers that I've never met.

Ian shared  our story with his ward and they are concerned about me. I have recieved cards and notes from members of his ward expressing their concern for me and letting me know they are praying for me. While I appreciate the prayers in my behalf  it is so nice to know that Ian, being away from home, is also being loved and supported by such caring people.

Monday is my 4th Chemo and halfway mark. On April 6th I go in for CT scan to see how I am responding to treatments. If it goes well, the plan is to have 4 more treatments.

Family Visits and Cancer Updates

Mom's brothers took turns to come see her.

She has 6 brothers and 1 sister.

5 out of 6 brothers came and

her sister is coming at the end of this month

Uncle Lee with Mom

Uncle Dan with Mom

Us with Uncle Dale, Uncle Tom, Aunt Angela and Uncle John

Cancer Updates

Mom had her third treatment this week and everything went well! She is feeling good. It amazing me how with all of the chemicals they are pumping in her, she can feel the way she does.

I expected so much worse (and it can be).

We are all feeling the strength of your prayers.

It really makes a difference! In more ways than you think.

_______

From Mom's blood work there are numbers called cancer
counters that represent how much cancer is in her.

She started off with 16,000 and was down to 11,000.
The doctor called today to say it is now down to 6,000!

To give some perspective...normal is 5. Not 500 not 5,000 just 5.

It seems to be working but we have a long way to go.

April 6th is a CT Scan that will tell more of the progress of the

treatments and will determine future treatments.

Feeling Good

Mom's second round of chemo went a lot better than the first. She still had an ER trip though. This time it was because of chest pain. Cancer patients can develop blood clots easier so with the chest pain we were told to go in and have it checked out.

Thankfully, everything turned out just fine.

Mom was able to keep food down and had good energy. (She still gets tired a lot, but she found herself doing more things this time) She did not feel nauseous at all either! It was a really good week...especially compared to her first week on chemo.
Her first week she was very sick and nauseous and just all around uncomfortable. She had fevers which could lead to infection so we would go to the ER to have that checked out. She always turned out to be ok. Just long nights at the hospital. She could not keep anything down and had to get rehydrated through an IV. Not easy at all, but she leveled out and made it through.

Thank you for all of your prayers! We are definitely feeling them.

Round Two

We are at SCCA as mom gets her second dose of chemotherapy.
She is doing great! And she got one of her favorites...grape juice.
We were able to be moved to a bigger room with a bed. She also got to meet with a nutritionist, which was helpful.
Its a good girls day too!

Valentines

Thank you for the thoughtful Valentine gifts Mom received today. It is her second day of chemo and she is feeling a lot worse than yesterday. They were much appreciated pick me ups! She spent most of the day in bed. We are so grateful for wonderful friends who have been so supportive and loving through all this.
Happy Valentines Day!

ER

On Friday night we went to the emergency room again. Mom hadn't been feeling good. She had a headache and fever. She also felt nauseous. We were worried her port had gotten infected since it had gotten a little wet earlier. Her blood pressure was the highest its been. 181/101. The doctor we called said to get her blood drawn to see if it was an infection so we decided to go yo the emergency room in Monroe. After a really long wait they were able to help her. Things went back to normal and there was thankfully no infection.

Mom starts chemo today 8am! Glad to get it started...we will soon see how she reacts to it.

Special thanks to the girls who came over yesterday to bring her a chemo basket! So sweet and thoughtful.