Praising God for The Good and the Bad; The Beautiful and the Ugly

A LOT can happen in 3 months, both good and bad!  And so as each day has zipped by, I've felt more and more emotionally overwhelmed when I've thought about updating this blog.

But it is time.

Some of you will be familiar with much of what has happened, maybe because you've kept up with it on Steve's Facebook account, or you've emailed or called.  But some of you will only know a small part of it, or not much at all.  I'm sorry I can't recount it completely, and I apologize if I forget some of it, but it is hard to keep the tears from flowing as I type.

Last time I told you that, according to my cancer antigen numbers and my latest CT-scan results, my cancer had recurred.  The doctor had already used the best chemo option available for this type of cancer, and did not want to go down the chemo trail again since it was so physically hard on me.  She briefly mentioned the possibility of a clinical trial drug, but couldn't say much about it yet.  So our next doctor appointment was scheduled for February.

In the meantime......Steve and I went on a trip to Modern Manna's program, BellaVita, where we did a "ten-day cleanse."  It felt wonderful to truly follow, to the best of our abilities, God's 8 laws of natural health, also known as NEWSTART.  The letters stand for Nutrition, Exercise, Water, Sunshine, Temperance, Air, Rest, and Trust in God.  What an awesome physical, mental, emotional, and spiritual cleansing.  And what incredible food -- raw, vegan, and SO delicious! 

Tempting?  Hee, Hee, Hee.

Yes, we were spoiled.  I won't go into any details about our cleansing experiences.  Some of it seems weird if you've never heard of it before, but it is all part of God's plan for taking the best care of our bodies that we can.

I must say though, that although we felt so much better in many ways, I had been feeling some lower back pain while we were there.  I thought perhaps it was due to sore muscles from using some of the exercise machines there, and from getting more exercise than I had been previously.  So I tried to take it easy and expected that it would get better with time.  But it didn't.  Plus, after getting back home we found that my CA-125 number had jumped from 28 on Jan 7 to 146 on Feb 6.  We decided to wait until after our daughter's upcoming wedding on March 10th before getting anymore CT scans or blood work done.

Well, that was the plan anyways.....

I can't remember all the details, but there came a day in late Feb when I felt a lump above my belly button.  Very scary.  On March 1 Steve and I drove up in separate vehicles to Santa Fe, where my doctor had appointments periodically.  The doctor ruled out the likelihood of hernia, but could not really say what that lump was.  It was very visible, but did not hurt.  She scheduled a CT scan and dr. appt. for March 7.

Well, the CT scan showed the lump to be some kind of accumulation of fatty tissue, or something weird, but not cancer.  That was the good news, but the bad news was that my CA-125 was now up to 303 and the CT scan showed new tumor activity.  My lower back continued to ache.  Ibuprofen (about 800 mg) seemed the best helper for that.

Not great news, but not much time to think about any of that because Caley's wedding was right around the corner -- and we had a houseful of GIRLS!!  What in the world were we thinking??

Sunday, March 10!

Finally the big day had arrived.  Caley had worked so hard, and it all came together beautifully.  I don't know what the boys were doing (they were staying with Rob), but the girls worked together and, with God's blessings, made Caley's dream come true!

So many friends and family with huge smiles on their faces!  You couldn't help but smile automatically too!

Proud Mama!

I Think We Had the Cutest Bible Boy and Prettiest Flower Girl Ever!

Mixed Emotions

Making Their Get-Away!

There are so many details left out, but that's okay because I think you can go to RobandCaley.com for more info.  I do apologize for not putting their website on here sooner because they had live-streaming and more of you might have been able to watch the wedding from your computers.

While I would like to spend more time talking about our daughter Caley's wedding and our daughter Naomi's high school adventures (Naomi and several classmates won 1st place in their basketball tournament in Keene TX, went to NYC on a mission trip and to DC for their senior trip, and participated at the annual SWAU Musical Festival), I guess I do need to wrap this up and talk about what's happening to me and my journey through cancer-land.

CLINICAL TRIAL

We were finally able to learn more about the clinical trial my doctor had mentioned previously.  Basically it should affect the cancer by affecting the biological pathway(s) of the cancer cells, keeping them from growing, or at least growing significantly.  You can probably tell I don't know what I'm talking about.  I have not reviewed the papers about the study in a while, and am very, very tired right now, just trying to get this post finished and out there for you to read.

I signed up to start the trial, and started my first infusion on April 4.  The first week was pretty hectic with lots of pre-infusion lab studies and tests, etc.  Things are more calm with that part now.  Basically the infusions are for half an hour every Thursday, and every so often there are different lab studies and blood work, and about every month or so there are scans to see what's happening inside me.

In the mean time, the doctor and P.A. had been working with me to find the right combo of pain meds to best alleviate my suffering.  Nothing was really helping that well, except for ibuprofen as I mentioned earlier.

I'm pretty sure (life gets more and more confusing lately) it was the afternoon of the second infusion, as we were trying to finish up to be able to get home.  The ibuprofen I had taken earlier in the day had worn off and my "pain level" was just getting worse and worse.  The oxycodone was not helping.  I was wiggling around and grinning and bearing it, like I often do, but one nurse noticed that I was in pain.  She got in touch with the doctor, and after some discussion, the doctor authorized them to get me some morphine through my port which was still open.  Steve and I were hopeful that I might at last get some relief -- but it didn't really help that much!  We were so disappointed!

Well, one good thing was I slept for a few hours straight after I got home that evening.  I was so exhausted!  I was confused, thinking it was morning time when I woke up.  Had to get re-oriented, and eat dinner, and praise God, I slept some more during the night, after increasing some of the levels of the pain meds that evening.

Another good thing -- I was scheduled for a bone scan the following Tuesday.  So along with my clinical trial infusion on that Thursday, I also met my doctor's working partner (my doctor was out of town), and had a consultation with the radiation oncologist about setting up some radiation treatments.

Yes, the bone scan showed that the cancer has moved into my bones, causing my pain. But apparently radiation can be used to reduce that type of pain.  It cannot be expected to cure the cancer, just merely to reduce the pain.  Crazy, huh?

This has been a rough journey, but as we've seen, there are lots of God's blessings to be found along the way.  I am not quite understanding it all though.  I admit I still struggle with the rough stuff.  Thank you for your love and continuing prayers.  I need them so much!  And your forgiveness too, for not keeping in touch and explaining things more often.  I do love you all and am praying for you too.  Praying for your health (it is precious), and happiness, and every good thing God can bestow.  And praying that if I don't see you again on this Earth, we will meet again in His Heavenly Kingdom.

Blessings to you all!  (Hey, it's snowing outside.)

Caroline    

p.s.  Yes, these infusions do have side effects, not pleasant, but I do get to keep my hair!!  Can't think too straight right now.  Major one that comes to mind right now is low appetite and mouth sores -- awful.  Hopefully we will see some benefits from all this, and especially in the future with possible development of a new drug that could help so many people.  Of course, God is the Master Physician, I will never forget that!

New Year Catch-Up Update

Hello my dear friends and family,

I am overdue for an update, and since I just got the latest news yesterday I thought I should post now before any more time slips by.

Those of you on Facebook know that I had a CT-scan on Monday (Jan 7) and got the results yesterday (Jan 10).  The CT-scan was ordered due to a rise in my CA-125 level back in December.  The level had risen from the low of 6 to a questionable 21.  As the doctor put it, this was just outside the normal range.  They like to see the numbers below 21.

To back track just a little bit, I had a mammogram done on Dec 6, because I detected a lump on my left side.  It reminded me of a lump I had 3 years ago, which turned out to be (after mammo, ultrasound, and biopsy) a benign, but complicated cyst with thick walls.  Having tested positive for the BRCA1 gene mutation, which gives me a very high probablity of developing breast cancer (as if I didn't have enough to worry about), I immediately asked for a mammogram.  The results came back negative, and I am going to trust that this is the case.

My more immediate area of concern, after all, is this other cancer, the UPSC, the rare and aggressive and highly recurrable cancer I learned I had almost one year ago.  Can you believe that much time has passed?

Anyways, to get back to my doctor appointment yesterday....  The CT scan results from Monday started out positive, stating that areas which had been trouble spots before have disappeared or shrunken.  Well, that's good.  I do, however, have 3 suspicious new spots, in new places.  This, together, with the fact that my CA-125 level rose AGAIN, from 21 to 28, indicates that the cancer is "doing its usual thing" and is metastasizing in new places.  That's what UPSC is known for...

My doctor has no wish to make me miserable, and she didn't think another round of chemo was a great idea, given how I reacted to the last treatment, and how thin I still am.  I have not been able to gain any weight back, and tend to hover around 100 lbs.

She did mention the possibility of a clinical trial, which is now under an amendment process and will start up again in a few months.  Don't know much about it, but I think she said something about it being biological in nature, instead of chemical.  Still would have side effects, and I may not even qualify for the trial.  Will have to cross that bridge when we get there.

Right now I am symptom-free and both she and I are glad for that.  I feel pretty well, actually, except for being tired still (same reason, hot flashes/night sweats keep me from sleeping enough - ugh!).  I have an appointment to get my CA-125 level checked again in 4 weeks (in early Feb) and then discuss the results with her on Feb 7.

How do I feel about all this?  A bit mixed up.  I am upset, confused, hopeful, thankful, and sad all at the same time.  I know many people are praying for me and I know God is listening to and answering those prayers, but maybe in ways we can't see or understand.

There's so much I want to try between now and the next blood draw.  Have to EXERCISE!  Need to JUICE more GREENS!  Must be more consistent with taking my VITAMINS and SUPPLEMENTS.  I need to get more serious here, and do what I can.  Do my part, and let God do His part, so to speak.  It is a bit overwhelming when you are tired, but I want to do better.  Wouldn't it be so great if the numbers came back down?!!!

I need to stop typing now, and return a phone call from a concerned friend.  I love and appreciate all of you, and I pray for you too!  Thank you for listening, and praying, and just being there for me.

Love,  Hugs, and Prayers --  Caroline  --  p.s.  My hair is crazy thick and curly now, especially on top!  Here is a quick picture (haven't combed it yet this morning, just with my fingers anyway).

Wedding Bells

Hi again!  It's "Facebook official" now, so I can announce it.  Caley and Rob are engaged!  What a cute couple, don't you think?  They have set the date for 3/10/13.  (Can you tell Caley's favorite number is 13?)  That date just happens to be when daylight savings time starts up again though.  Sure hope no one is late for the ceremony!

Caley and Rob are very busy right now making preparations.  Once their website is ready, you can read their story.  It is amazing how God has led them together -- and especially how they have let Him guide them in their relationship.  God has blessed, and is blessing, and you will love reading about it!  ~ Caroline <3

Family Photo

Hi Everyone,

Just a quick note with an updated family picture, taken by Rob Gonyea.  Our church secretary is re-doing the church directory and the old picture was.....very outdated.  We are all doing well.  I am actually doing better emotionally after cutting way back on the anti-depressant pills.  Still not getting the greatest sleep, but still smiling.  God is *always* taking care of us!  Love and Blessings to all of you.  

Caroline <3

Holding Steady, Praising God

Hi Everyone,

It's been a long time since my last post and I just wanted to let those of you who don't have Facebook know that I am doing okay. At my doctor's appointment a week ago I found out that my CA-125 is the same as my last reading: 6! My pelvic exam looked good and the doctor wants to see me every 3 months. I thank you all for your love and prayers and I praise God for His answers!

My hair is growing back!  There is more thickness than length, except the temples and sides are thinner (so I didn't take pictures of those areas - ha ha).  Plus there are more white hairs at the sides, which makes it look like I have even less hair there!  Yuk!  Oh well, it will get better!  Naomi calls me her little duck because my hair feels so soft.  =)

Had a little family re-union earlier this month. It was so wonderful and so fun to see everyone -- well, almost everyone. (Wish you and the girls could have made it, Renee.)  Here's a picture taken in our garage.



I am doing well -- but still have some of the same issues. I am trying to wean myself off of the anti-depressant since it doesn't help with the hot flashes like we had hoped. I hate being on medicines and want to get off this one in particular, if I can. Apparently withdrawal symptoms can be nightmarish (as I found out on the web,not from my doctor), so I am going slowly. So far so good. I have noticed a little more crying and slight headaches, but this is nothing compared to some people's experiences. I will continue at this level for a while so my body adjusts and then decrease a little more, gradually, over time. Sure would appreciate your prayers about this. I thought I had found a solution recently to the hot flashes by taking red clover tea, but apparently it isn't consistent.  It does seem to help some nights. Last night I got 7 hours sleep, which is pretty good! Yay!

I tested my pH and found I was on the acidic side (which most of us probably are here in the U.S.), which promotes disease.  So am trying to eat more vegetables and fruits -- been juicing some greens -- in order to get my pH more on the alkaline side.  It's not easy re-training your taste buds!

Well, time to say bye for now. I hope all of you are doing well. Thank you so much for your love and support and encouragement and prayers. I love you all and pray for you, too!   ~Caroline <3