Happy Birthday!

It is so hard living on the other

side of the world, practically, from my Mom.

And today makes it even harder! It is her birthday today.

There is only so much I can do from all the way over here.

I figured a public, "Yipee! It's your Birthday!" post would be good.

Mom, I hope you have a great birthday.

I don't like to see you struggle. You are a wonderful example to me and those around you of  faith and good perspective. I looked through some old photos today, which only made me more homesick and miss you even more! I am in awe, as I think back through the years, at your incredible selflessness.

I'm so happy you are my Mom and that we are so close.

Happy Birthday!!

xoxo

Folfiri part two

After delaying the second round of folfiri due to being neutropenic, I skipped my third round due to dealing with complications that happened when the stent was put in. I didn't want to deal with the changes and complications and chemo at the same time so it was my decision to skip one round. Not expecting a diet change because of having a stent complicated life just a bit. How do you eat healthy when they put you on a low fiber diet? Now I'm back on track with the schedule.

The day before Thanksgiving I had a ct scan which showed that the tumors in my lungs are still continuing to grow. The concern is that this chemo is not working. But because I was delayed with one round and skipped another, it may just be that I haven't been consistent enough. The plan is to do two more rounds which will make four consistent rounds and have another ct scan on January 6th. If the tumors are still growing we will move to the third and final chemo option. 

I did so well with the folfox it didn't enter my mind that this one would not work for me. I'm trying not to worry about it until we know for sure what we are dealing with but at the same time it is good to be prepared.

This has been a rough chemo on me, leaving me very weak and tired (not to mention the hair loss). But I continue to feel lifted by the love and prayers that are so generously given in my behalf. I believe they are literally keeping me going. I am so grateful for the support of good friends and family that I am surrounded by. 

Folfiri

My first round of the new chemo, folfiri was not very pleasant. I left SCCA in a wheelchair, dizzy, and with twitching eyes. My eyes finally got back to normal after about 5 hours. It was a side effect of one of the meds they gave me to reduce an expected side effect that I never got. I won't be taking that again. One side effect of this chemo is a lovely acne type rash which I do have.

I went in for my 2nd round and was neutropenic so I couldn't have chemo that day. Instead, I went in the next three days for shots to help boost my white blood count. So chemo was delayed a week and I went in on Tuesday. Everything went well. I feel good. The only thing is that my hair is thinning big time.  I don't know how much I'll loose but it's freaking me out a bit when I wash my hair and I find big clumps of hair in my hands and also when I style it. I'm trying to stay positive but losing your hair is hard. 

My last CT scan showed not only the tumors in my lungs growing but the one in my colon growing as well. I feel I made the right decision in making the chemo switch. I have gone in for testing on the colon. The pictures show a significant narrowing of the colon in one place which has been giving me problems. I will be going in next week to have a stent put in to help relieve those problems and make me more comfortable. 

I know that whatever we are asked to go through in this life it is for our growth and benefit. I am trusting the process and am striving to stay positive and learn what is meant for me to learn and do what is asked of me to do. I love my family and am strengthened by their support as well as the support of fabulous friends. This would be so much harder without you! I trust in my Savior and know that He loves me and is with not only me but my family as we go through this. All of these things bring me comfort and peace.

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.

Blessing in Disguise

Life has been a whirlwind, running from one thing to the next. Everything from family coming to visit to prepping Jason to leave for his two year mission, grocery shopping and everything in between. It has been anything but the quiet norm around here. Last week was supposed to be a chemo treatment week, but with the excitement going on, was pushed back to today.

This is Valerie, writing again on my mom's account. We are currently at SCCA bright and early in the morning. It is so good to be back home, I miss Seattle very much and it is great to be with my family. Jason is leaving tomorrow, I can hardly believe it. I am so lucky to be here watching him prepare to serve his mission.

After the usual pre-chemo blood test, the results were a blessing in disguise. My mom's white blood cell count was too low to do chemotherapy today. This is the first time being turned away. With all that has been going on, her body did not get adequate rest. This means we push back chemo another week, not without a little help for next time. We are waiting for her to get a shot to help boost those white blood cells! She needs to be careful hygiene wise by eating well, getting rest, washing hands more frequently because she is more susepctible to infections and the like. It is a blessing because today is Jason's last day and we get to spend it with him!! My mom is so thrilled about that. Just so everyone knows, this happens and is not uncommon for cancer patients. It is something they monitor regularly and will treat as needed.

We're off to enjoy our day! See you next week SCCA.

32 Rounds

I had a ct scan on Friday and it showed that everything is stable and my numbers are stable as well at 209. My doctor is very pleased with how well I'm doing. I've been on this 1st line of treatment for 18 months now and he is very happy about that. As of today I've had 32 rounds of chemo.
With no end in sight I have to admit that sometimes it's hard to keep going with a smile on my face.
He also said that it might do me some good to take a break once in while. He said to let him know when I need to take a month off! :) I'm going to take a month off in January. We'll pick Ian up from the airport and go see Valerie and Garrett and their new baby and I will feel good and have energy! Now, that's something to look forward to!

Visiting Family

For lots of reasons we took a family trip on the East Coast. It was so nice to be together again, but this time we saw extended family. We started in Baltimore and made our way up to New York. Baltimore/DC was our favorite! We got to see our cousins and did a lot more site seeing. Thanks MD Goldens for a great time!

It was a blast!.....

Fort McHenry

Washington DC!

We stopped at the 911 Memorial in NYC

We also saw old neighborhood friends, met up with friends from our church, and

saw my Dad's extended family for a Father's Day dinner.

Corey and Ian were missed for this trip!

Both Mom and Dad had to get root canals on the trip! Can you believe it!? They each were having problems with their teeth before the trip, but the cabin pressure on the flight quickened the pain and urgency to take care of it. Luckily they were both able to be fit in at the dentist (one in Maryland and one in New York).

It was a quick trip, but I was so grateful to see my parents and Jason! So blessed that mom was feeling up for the trip. Thanks for the love and support we felt from some of you!

Here's to Family

The results of the CT scan my mom had a few weeks ago showed no growth in her tumors. Only the tumor in her thyroid shrunk just a little. Because of these results, the doctor decided to keep her on folfox (the current chemo she has been on) for another two months of treatments. She will have another CT scan at the end to check the progress again and decide from there if there will be any changes.

From the talks I've had with her and check in calls, she gets tired more frequently now. Her hair has started to thin again. She has even started feeling nauseous and throwing up (sorry mom, but friends should know). I will catch her working on her quilts and doing things she loves which makes me feel so grateful. I am so happy she has energy to keep going. However hard it is and however sick she feels sometimes, I know she keeps going for us, her kiddies. I wish our family was closer so that we could be more helpful and share more memories together, but I know even when we can't see the daily struggles and feelings she has, that she thinks of us and finds it in her to keep going. I know we all think of her often and are amazed. There is nothing better than family and I feel so lucky to have mine. For those who haven't heard, the youngest in our family, Jason, is leaving in August to serve a two year LDS mission in the Philippines. I know it was a hard decision for him to make, but hard as it was our family is so proud of his decision. In January, we will welcome home Ian who is serving his mission in San Diego. My mom has been holding strong especially for him. He was gone when we learned about the cancer. I know when the two of them meet again, it will be a very sweet reunion. There is something about our family being apart, but feeling close. I love knowing I have them forever.

A Failed Attempt

Valerie Here. I am at SCCA with my mom, on her computer, while she is getting her next round of chemo. No changes to her chemo treatments yet.On Friday the 19th she went in for a lung biopsy to confirm if the growing/multiplying tumors in her lungs were in fact cancer. The rest of her organs have been stable with the current chemo. The procedure was 2 hours long. Her back was numbed in the area they would be putting the needle in. She laid on her stomach and was told to breathe in and out the same amount of breath as they pushed the needle deeper. She was not sedated for this, the local anesthetic did not take away all of the pain. When the needle hit her ribs it hurt her. They had to maneuver around the ribs. When the needle was pushed though the layer that surrounds the lung, that also hurt her. They had just gotten the needle through the lung and were very close to getting the targeted tumor when the lung leaked air and began to collapse. As the lung collapsed the tumor moved farther away from the needle until the needle was no longer poking the lung. It was too risky to poke it again with the air escaping, so they pulled the needle out of her and stopped the biopsy. They did an X-ray to see how much it was shrinking. She was hooked up to oxygen for the following six hours of rest at the hospital. They monitored her to make sure she was getting better not worse. They would not let her eat until two hours before leaving in case they needed to do a chest tube to drain fluids, or anything else in an emergency to fix her lung. She turned out to be ok and was not admitted! We were glad to be home friday night. She was to get lots of rest for a couple days and not go up/down stairs or lift anything heavy. It hurt her to breathe, especially if she sat up. Her back was also sore from the needle.For those of you who don't know this, my mom rarely sleeps more than 4 hours a night (I know, how in the world is she surviving!?). The night of the lung biopsy she slept for 10.5 hours! She felt so good and well rested the next morning. I had to make sure she didn't push herself since she was still healing. Its so frustrating for her to be held back, physically. I don't blame her. I am so grateful for her energy and the times she feels "normal." I hope that continues to be a big part of her life and the moments of pain and sick feelings are kept to a minimum.As for the biopsy, we are thinking there will not be a second try. Which we are completely ok with. Her doctor is going to decide for the next round, if the chemo will change or not. Most likely it will.I have been so impressed with my Mom throughout all of this, but she gains giant boosts of confidence when she hears from all of you in a variety of ways. You are what keeps her fighting strong. Thanks for expressing your love and support. Keep it coming!

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...

Two down, two to go

I know many of you are checking my blog to find out how I'm doing. I've had two rounds of chemo since my last post and two left to go before my next CT scan. The good news is my numbers are coming down. They were at 469 on Monday. The side effects are not fun, and I'm still dealing with them. I'm getting ready to go to NC next week! I am so excited to see Valerie, Corey and my sister! I'm hoping the sun will be there as well. Just before my first round of chemo, we had a water pipe leak in our house. It was from an upstairs bathroom sink. The water ran straight down the wall and under my hardwood floor and carpet downstairs causing over $14,000.00 worth of damage. Ugh. The whole wood floor has to be replaced because they can't match it. Some drywall needs to be replaced and my new shoe storage bench needs to be repaired. Never a dull moment...

Going back on FOLFOX

I went to the SCCA today for my scheduled treatment. A typical day for me is to first have my port accessed, and get my blood drawn. Then I see my doctor and he goes over the results of the blood work as well as checking my vitals and asks me questions about how I am doing and answers any questions I may have. Then I go upstairs for an infusion that lasts 30 minutes. It has become very routine to me. But today was different. My numbers have gone up, quite a bit. They are now 624. And that is after increasing my current medication. He said he didn't feel that it was effective any more and wanted to put me back on FOLFOX which was the chemotherapy that I was first started on. It wasn't really a surprise to me. I knew this was coming and I could tell the medication wasn't as effective as it once was but I was still a little disappointed.

But I've been here before and I know what to expect. I asked him how long I need to do the folfox and he said he normally starts with 2 months and then does a CT scan to see how things are going and  makes a decsion based on the resuls of the CT scan.

So, for now I say good-bye to ice, good-bye to nice cold drinks, good-bye to ice cream and good-bye to nice thick hair. And I say hello to my old friend the pump. We will need to get reaquainted with each other. It goes everywhere with me for 3 days and 2 nights every other week. It gently reminds me it is there with it's regular pump noises. It sleeps between me and Eddie so it doesn't fall off the bed. And I need to be careful to not keep turning in the same direction all night so we don't get all tangled up together. I need to remember to pick it up before I start walking anywhere...to answer the phone, to wash my hands to get the remote. If I forget to take it with me, I am reminded very quickly!

I can do this. I will keep focused on 2 months...just 2 months.

Keep those prayers coming, they are working. I am so grateful that I feel as good as I do.

Genetic Testing

Back in early November I had some genetic testing done. They wanted to see if I had Lynch syndrome which is an inherited condition that increases the risk for developing colon cancer and other types of cancers. Doctors estimate that about 3 out of every 100 colon cancers are caused by Lynch syndrome.
People who have Lynch syndrome have a significantly increased risk of developing colorectal cancer and an increased risk of developing other types of cancers such as, endometrial (uterine), stomach, breast, ovarian, small bowel (intestinal), pancreatic, urinary tract, liver, kidney, and bile duct cancers.
In addition, cancer is more likely to be diagnosed at a young age. The average age for colorectal cancer to be diagnosed in someone with Lynch syndrome is 45, as compared with the average age of 72 for a new diagnosis of colorectal cancer in the general population.

I recieved a phone call today with the results of the testing. They said everything looked normal. I do not have Lynch Syndrome or any mutated genes that would lead to cancer.

So there is no answer as to why I developed colon cancer at such a young age but I find it comforting to know that I don't have Lynch Syndrome and can't pass that on to my children...although they will need to start having colonoscopies at the age of 30.

PET and CT scan results

Friday I went in for  PET scan. I haven't had one before. I wasn't sure what to expect.

I know some of you won't believe me when I say I have been sitting on my duff for too many days now. And just when the thought crossed my mind that I should take advantage of the treadmill in my house, I remembered that the PET scan required me to NOT exercise for 48 hours before the test. No problem! I sat back and continued duff sitting.

The test was interesting. I got a nurse in training. She was very nice and very attentive, but...
She was putting an IV in and couldn't find a vein. Once she had the needle shoved all the way in she moved it around looking for the vein. Ouch. She couldn't get it so she tried the other arm. Same thing. Ouch. Then she got the nurse who was training her to do it. Then I got a catheter...um...we'll just leave it at that.

Then the "nuclear technician" came in and injected something radio active into me and everyone left the room. I was to sit there for 30 minutes and sit still and not read or move. Every once in a while I would catch myself reading the IV bag or the contrast bottles and then I realized I was working my eyes, and that I should just close them. It's amazing how many things there are to read,when you're not supposed to read!  Then I had to drink 1 1/2 bottles of contrast for the CT scan. Then I walked to another room where the PET and CT scans would take place. I laid down and put my hands up over my head. They placed a towel on both sides of my face to keep my head still and a pillowcase over my arms so that my arms could totally relax and the pillowcase would hold them in place. Then I went inside the machine and had to lay still for 40 minutes. 20 minutes was a pieces of cake but then they clamped off my catheter and filled my bladder beyond reason and I still had to stay still. THAT was hard! Finally the end came. Whew.
Yesterday we went in and got all the results. The reason my doctor ordered the PET scan was because of my tailbone pain. He was concerned that there might be cancer in the bone. That came out negative. Good news.
My numbers only went up by 1- -now at 306. And the scans showed tumors growing by just a millimeter. The doctor told me before that at some point I would need to go back on the chemo pump and it looks as though things are trending that way. We're going to try to up my dose of the maintenance chemo I'm on now to see if I can handle it and to see if it makes a difference. So we're just watching and waiting. Still feel great. :) Thanks for all your prayers!