It's Been Awhile!

I have just been enjoying the fact that I am in remission and don't have to go through any more chemo treatments, so haven't blogged anything for awhile.  But  family and friends who are far away are asking how I am doing.  So here is an update.

On February 25th, I had the surgery to have my port removed.  I was just under conscious sedation, but I sure don't remember anything after they prepped me!  When I was in recovery, they asked if I wanted to keep my port.  So here it is!  One friend suggested that I make a Christmas ornament out of it - which I think is an awesome idea.  I will have to get creative somehow and make it look festive.  I didn't know it was purple and heart shaped.

During chemo treatments, my arthritis was completely gone because of the drugs I was taking.  Well, after those drugs wore off, my arthritis has come back with a vengeance!  I am having pains where I never had pains before!!  So I am hoping that it will settle down after awhile.  It's not bad enough to be taking any medications for it, but it certainly can be painful if I bump a joint that is aching.

My energy level has increased dramatically.  It is not back to my normal energy, but so much better than it has been for a really long time.  Now that I am feeling better, I realize how long it has been since I have felt this good - since way before my diagnosis!  I can go up stairs now and not be exhausted and winded after 10 steps.

I having been playing some golf (riding in a cart, not quite ready to walk 18 holes yet.  It makes my swing erratic when I get fatigued!) and am looking forward to some hiking this summer.  Ken had hip replacement surgery 1 1/2 weeks ago, so I think by the time he is ready to hike, I should be ready too.

The most common question I have been asked is, "How does your hair look?"  So, I started taking weekly pictures.  To help the growth along, I have been using a biotin shampoo and taking a biotin/apple pectin supplement.  I don't know how much it has helped, but I certainly have been getting some good hair growth.  I mean, it was growing in places that it hadn't grown before!  I had hair on my neck and face that was getting longer than a woman should have in those places.  So I shaved that off and it has not really come back.  My body has some readjusting to do!  But my eyelashes and eyebrows are back to normal. 

So, here are some photos of the hair growth.

Feb 6th.  One month post chemo.

March 7th

March 11th

March 18th

March 25th

April 1st

April 9th

April 15th

April 23rd
This is when I started going out in public without a head covering!

April 29th
It is coming in very curly, thick and soft.

Things I am thankful for:

- Returning energy!

- Supportive family and friends.

- Increased awareness of the beauty of life.

- The knowledge that I have a purpose, and a desire to accomplish more in this life.

- Increased love and appreciation for Ken.

- A stronger testimony of the fact that the Lord knows who I am and cares for me.

REMISSION!!

Yep, the scan was clear!  The tumor on my liver is gone and the nodule in my throat didn't show up at all.  Such exciting news!

So what happens now?  Well, for the first year, I will have checkups every 3 months.  I will have a CAT scan done at 6 months.  Then the second year, I will have checkups every 6 months.    If this type of cancer recurs, it usually happens in the first two years (which would be really bad!).  Then yearly after that until we reach the 5 year point.  That is when they consider the cancer cured.

The things the doctor told me to watch for are, swollen lymph glands, drenching sweats, fatigue and weight loss.  The spleen is a lymphatic organ and if it becomes cancerous, it will swell and put pressure on the stomach.  That can cause poor appetite and weight loss.

The effects of the chemo should start wearing off in the next month or so.  Like the runny nose and the taste and eating issues.  My hair that didn't fall out is getting about an inch or so long.  The new growth is just starting and is pretty prickly right now.  I am so looking forward to getting full eyebrows and lashes back!

I have an appointment next week to have my port removed.  It has been wonderful to have a port so that I didn't have to get an IV every time I had chemo or had my blood checked.  But it will be nice to have that gone.  I don't notice it often, but sometimes I can feel a pull from it.  It also gets irritated by the seatbelt in the car when I am on the passenger side.

I feel such immense gratitude for Ken.  I think he was more relieved than I was to hear the news.  If the news hadn't been good, he would again face the chance of losing me.  So I would probably feel the same way if our roles were reversed.  He has been such a wonderful support to me.  I am grateful for his concern, his advice, his prayers for me, his thoughtfulness and his unconditional love.

And I am so thankful for all of you!  I have been buoyed up by your prayers, your notes, your calls, your thoughtfulness and your love.  Thank you so much.

I am so grateful to my Heavenly Father for the many, many tender mercies I have felt from Him during this time.  For His comfort and promptings.  For the strength I have found through Him.  For the scriptures which testify of Him and His power.  And for the peace He has given me, especially during the times that I felt discouraged.  I am grateful for the covenants that I have made with Him and the blessings that come with making and keeping those covenants.  I know that He lives and knows each one of us - and loves each of us with a love beyond our comprehension.  I am grateful for this extended time on the earth and my prayer is that I will use this time to do all that my Father wants me to do and to accomplish.

PET Scan Done

Today we went to Salt Lake City to the Huntsman Cancer Institute to have my PET Scan done.  It is so nice to have Ken go with me, even though he cannot be in the room with me.  The scan is not a big deal.  They inject me with radioactive sugar and then I have to be quiet and still for 75 minutes while the solution goes through me looking for fast growing cells to light up.  I get to sit in a recliner with a warm blanket in a darkened room with no distractions like reading or listening to music.  A good time to sit and pray and meditate!  The scan itself only takes about 20 minutes.  Of course, the staff can't give me any indication of what the results might be.  I have an appointment with Dr. Wallentine on Tuesday afternoon and will find out the results at that point.

What we are hoping for is nothing lighting up!  The doctor said that there may be some scarring on the liver from the tumor.  It had grown into the liver, so will likely leave it's mark there.  In the initial scan, the only place that was obvious was the tumor on the liver.  The report did have this note:  "There is a mostly calcified slightly hyper metabolic lymph node in the low left cervical paratracheal region (throat) is most likely granulomatous (small nodule), although lymphoma cannot be entirely excluded."  Yeah, I had to look up a lot of those terms!  In other words, it lit up a little, but was most likely not part of the lymphoma.  So I will be curious as to what shows up on the new scan, if anything, in that region.  It is not something that I have been concerned about because the doctor was not too concerned about it either.  But it is something that sticks in the back of your mind.  I think the chemo would have wiped out anything that was remotely cancerous!

When I came out to find Ken, he was sitting there with this cute Teddy Bear for me!

While at the clinic today, I was asked if I wanted to be part of a medical research study that would only involve today's visit.  I agreed, because anything to help research along!  It actually has nothing to do with cancer, but is a study of the relationship between brown fat and heart disease.  They ask patients undergoing a PET scan because that is one of only two ways they can see brown fat.  The other is during surgery of the upper chest and neck.  It only involved taking some blood, body measurements and some family health history.  The doctor said she would send me the results, but it will take a few months.  Should be interesting.  I had actually read something about brown fat not too long ago, but couldn't remember what it was.  So I looked it up again and it is one of the things that scientists are looking into in regards to weight loss.  It seems it takes calories from normal fat and burns it.  It is an interesting subject - look it up!

On another note, when I was first diagnosed, our doctor friend gave us the fascinating book, "The Emperor of All Maladies" about the history of cancer.  I just saw that Ken Burns has produced a documentary based on this book.  The book was published in 2010, but even since then there have been new advances and discoveries in the cancer research field.  So I am looking forward to watching this 3-part, 6 hour documentary.  I think it is airing on March 30th here in Utah.

Well, now we will just wait to see the results of this scan!  Check back next Tuesday night!!

It's Nice to Not Have a Chemo Treatment!

It has been almost 4 weeks since my last chemo, and I am very happy to be through with that!  I have slowly been getting over my cold.  I just have a lingering cough.  I can't believe how much more energy I have had in the last few days.  That cold really threw me for a loop!

We were able to have a family dinner yesterday.  It's been quite awhile since we have done that.  So, all our Utah kids were able to come and we celebrated some family birthdays.  Food, family and fun for sure!  One of the birthdays celebrated was Olive's first birthday.  She has started walking since I last saw her.  It seems she is changing so fast now.  We now have another teenager in the family.  Michaela turned 13 and we spent Saturday afternoon together having lunch and shopping.  She is such a beautiful young woman.  And so fun to spend time with!

One of the best things to happen is that I have gone back to serving in the temple.  Today was my first day back.  It was so wonderful to see all my friends that serve there.  But the most touching thing was to have so many of the regular patrons tell me that they had missed me.  It seems like I was getting hugs all day long!  And I had the energy to put in my 4 1/2 hour shift.  Tender mercies from the Lord for sure.

Last week, I found this on my front porch.  One of the Primary workers in our ward got a group of the preschoolers together and made the cute poster.  I'm sorry I wasn't here when they dropped it off.  I would have loved to see those kids!

Today I am thankful for:
- Getting over my cold.
- Wonderful friends.
- Being back at the temple.
- Tender mercies from the Lord.
- Our wonderful family!

Another Road Trip

Well, it is just over 2 weeks post chemo and the only thing I am still dealing with is this darn cold.  I can't seem to get rid of it.  I know my immunity has been low, so I am thinking that is why this cold is hanging on so long.  It seems to slowly be getting somewhat better, so that is good!

Having a husband who is really getting into landscape photography means that we have to go on road trips to take pictures.  He is also learning to take photos of the night sky.  I love spending time with Ken, so this is a win-win!  This week we went to some of the beautiful places in central and south Utah.  All but one of these pictures are from my phone.  I will have to get the photos Ken took when he downloads them onto the computer and sends them to me.

There was this canyon not too far from Goblin Valley called North Temple Wash.  We took our Xterra  on this trip so that we would be able to do some off road driving, and this drive was through some washes and narrow canyons.  It was almost like a slot canyon for SUV's!  Good thing we didn't meet another car in this spot.  Actually, there were very few people anywhere we went.  Nice time of year to go!

The erosion in the rocks was pretty spectacular.

We saw lots of balancing rocks.  I can't imagine what keeps those things in place!

The next stop was at Capitol Reef National Park where we drove through Cathedral Valley.  That is another place that it was good to have the SUV.  The mud there was full of clay that may never come off my car!  There is a formation there called Glass Mountain.  It is not very big, but is very interesting.  It is formed of a type of gypsum that is crystalized, so the whole thing is sparkly and shines (though you can't really tell from these photos).  And they are very, very sharp.  You would not want to touch this!

Then on to Natural Bridges National Monument.  It was so COLD!  The wind was blowing pretty hard, which made it feel even colder.  During the day, we checked out where Ken wanted to take night photos.  We hiked down to the bottom of this bridge and then I went back to the car while Ken stayed till after dark to get the photos he wanted.  It was windy and cold at the car so I thought he must have been frozen down there as it got later and later.  But he said that where he was taking the pictures, the wind was blocked.  

I had an interesting experience in a restaurant in Blanding.  As we were finishing our lunch, the waitress came up and asked me what I was going through treatment for.  Most people just look at me with my head coverings and don't say anything.  So it was rather a surprise.  I told her that I had just finished chemo for Non-Hodgkins Lymphoma and she said that her mother had recently died of breast cancer.  We talked for a bit about going through chemo.  She shared a little of what her mom had gone through with surgery, chemo and radiation and how hard it was to watch.  It's a strange thing to feel that I am part of that cancer community now.  I don't often think of the word cancer in relation to myself.  It still doesn't feel quite real to me!  But it was nice to talk to her and feel what we had in common.

The last day We drove through Valley of the Gods and Gooseneck State Park.  Then on to Monument Valley.  I had never been there before, but the formations we very familiar from all the Western movies that have been filmed there.  It is not a national park, but is a Navajo Nation Park.  In fact, many Navajos actually live in the park.  There is a 17 mile loop drive with many spectacular spots to stop and take pictures.  If you want to go beyond that, you have to hire a Navajo guide.  

So, it was a wonderful trip with lots of beautiful things to see.  And best of all, a week with Ken with no interruptions!!

Things I am thankful for:

- The amazing beauty of this world.  And that we live so close to these natural wonders.

- The time with my sweetheart!

- A car that can go on all sorts of interesting roads.

- Kind people everywhere.

- People sharing with me that I have been in their prayers, or that they put my name on the prayer roll at the temple.

Feeling Better

Whoa, I'm glad to be back feeling better!  I had a couple of days there that were not very fun.  I don't know if it was fighting a cold on top of chemo, or just the cumulative effects of 6 rounds of chemo.  But I am feeling good again!  I certainly feel better when I can get some good sleep, which I was not getting between  hot flashes, a stuffy nose and prednisone.

I have been thinking about how blessed I feel to have avoided the worst of the chemo side effects that can happen.  When I look at the list of possible side effects of the different drugs that are used in my treatment, it is probably about 2 pages, single-spaced of possible effects.  Before this, when I thought of chemo, the side effects that came to mind were nausea, vomiting and hair loss.  That is only the tip of the iceberg!  So if you want to know more, and maybe help someone you know that is going through chemo, read on.

Everyone's chemo is different.  There are different drug combinations for the many types of cancer out there.  And even someone with the same cancer and chemo treatments will react differently to the treatment.  Most of these effects have gone away by the end of the third week after treatment for me.  Just in time to go get infused and start all over again!  Here are some of the lesser known things that have happened to me.

Runny nose.  Chemo makes your nose run.  All. The. Time!!  I have tissues everywhere - on my desk, on my nightstand, in my purse, in my car, in every pocket of my coats, sweaters and pants.  Thank goodness for tissues that have lotion in them, or I would be walking around with a red, irritated nose. So, a good thing to drop off to a chemo patient is a box of tissues with lotion!

Watery eyes.  I guess it's part of the runny nose thing.  For about the first week after each treatment, my eyesight has been affected and everything is rather blurry.

Digestion problems.  Since the chemo kills all the fast growing cells in the digestive tract, this is a problem for everyone.  For me, the first week following treatment has been hard to find food that tastes good and goes down easy.  My throat constricts -  sometimes even while drinking water.  Soups, especially smooth, creamy soups have helped me.  And ginger tea with lemon and honey.

Constipation.  Part of the digestion problem.  Two words - sennekot and prunes.  Enough said!

Hot flashes.  I thought since I was pretty much done with menopausal hot flashes that this wouldn't be a problem.  No such luck!  And at times, these are worse than any I had experienced pre-chemo!  They can certainly disturb good sleep.  It's amazing how much heat can be generated by this lovely side effect.

Skin sensitivity.  This is a random thing that pops up every once in a while.  Sometimes a spot on my scalp or on my shoulder will be very tender.  Nothing is visible, but I can feel fabric rubbing over a sensitive spot.

Headache.  Great - I already deal with headaches.  What I don't need is more of them!

Muscle spasms.  I had a really bad back muscle spasm after the first round, but hadn't really dealt with this until recently.  I have gotten foot cramps a few times  lately.  But foot cramps are much easier to deal with than the back spasm was!

Skin changes.  My fingertips sometimes peel and get cracked.  In fact, I cannot even unlock my iPhone with my fingerprints anymore!  I need to reenter my prints.

Taste changes.  I have not had the metallic taste that some chemo patients report.  But there is certainly a change in the way I taste food.  And it seems there is always a bad taste in my mouth. Some patients like to suck on lemon candy.  Some need sour,  some need sweet and some need acidic.  Sweets and candy is one of the things that taste terrible to me. I can't believe I am saying that!  I love my chocolate.  For me, the taste that helps is salty.  Crunchy Cheetos and Fritos have been my go-to snack at times.  And I haven't had to give up my beloved Mexican food!  So ask your chemo patient friends what helps make food taste good to them.

Fatigue.  This is a big problem.  In fact, it was the only symptom I had before diagnosis.  And who would associate fatigue with cancer?  My energy level is nowhere near where it was pre-cancer.  But it is not debilitating.  I get winded climbing stairs or going up hills.  But I am still able to do those things.  I have just slowed down!

Chemo brain.  Oh my.  How I miss my brain sometimes.  My sister was just telling me the other day that the medical coding system for insurance now lists chemo brain as an official medical condition.  I don't know if they officially call it "chemo brain", but there is now a code.  Multi tasking is much harder.  And words elude me at times.  One example.  When we were on one of our photo road trips, I was trying to ask Ken if he needed his tripod to take some photos.  I was looking at the tripod on the seat of the car and the only thing I could say to Ken was, "Do you need this . . . you know, thing that has three legs . . . that you put your camera on?"  Yeah, pretty sad.  Ken keeps threatening to play some word games with me.  He says he might have a chance to win for a change.

So, as I said.  I am feeling extremely blessed to be able to have gone through chemo without being sick and in bed.  As I was talking to Ken about this earlier today, I did have to admit that there were 2 things about chemo that were actually good.  Since you lose hair all over your body, I have the smoothest legs around without shaving!  Our granddaughter that just started shaving her legs is a little jealous of that one.  She says shaving is a pain.  The other interesting side effect is that I have not had an arthritis flare-up since starting chemo.  It has to be the most expensive arthritis treatment around!

Things I am thankful for:
- The ability to find things to be thankful for.
- My wonderful support system that has helped me through this crazy time.
- The scriptures, where I have been able to find comfort and perspective.
- The best husband in the world!

A Little Update

Day 3 after chemo and things are going almost the same as before.  I think the cumulative effect of chemo is starting to show up a little.  My food issues are more pronounced this time.  When I took a sip of my smoothie this morning, it tasted terrible!  Food sounds good, but it sure doesn't taste very good.  It takes an effort to swallow right now.  But I know that this effect will be over with in a few days.  The prednisone is affecting my sleep again.  I have 2 more days on prednisone and then I should be able to sleep a little better.  And the good news is, this is the last time I will have to deal with these things!  So all in all, I am doing fine.

My PET scan is scheduled for February 12th at the Huntsman Cancer Center.  That is the test where they will inject me with radioactive sugar and see if any cancer is left to light up the scan.  I probably won't know the results of the test until the following week.  So prayers right now are for a completely clean scan!

I am thankful for:
- Not having all of the side effects that can come with chemo!
- My cold has gotten better.