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

Break Time!

Hello everyone! It's been almost two weeks since my paracentesis. I wrote about it on Facebook, but not all of you are on Facebook, so I will catch you all up on the latest. Thankfully, the paracentesis was scheduled early in the morning on Aug 2, because it ended up taking a lot longer than planned and I hadn't eaten anything since the night before. My CT scan just two weeks earlier had shown fluid near my liver, but it never bothered me -- I couldn't tell it was in there. Well, to make a long story short, the doctor looked with ultrasound and said the fluid pockets seemed much smaller than the CT scan had shown. She tried twice to get fluid out of two different areas where she thought she had the best chance -- on my left side right under my ribs, and down low near my bladder. Both attempts were unsuccessful. The first attempt was close to my ribs and I don't think she was able to get the needle in the fluid at the right angle. The second area had to be verified with a CT scan because it was near my bladder. So they wheeled me into another room. They found the fluid, but the needle would not go through the peritoneal lining. The lining was too thick and the doctor didn't want to push it through too sharply for fear it might go through the small pocket of fluid and out the other side. She said she never saw anything like it before, the way the lining "grabbed" the needle each time she tried. I could feel it too. So strange. Well, she tried her best, and the next week I saw my gyn/onc to discuss what to do next. She was happy that there seemed to be much less fluid than the earlier CT scan had indicated and said it was a good sign. Praise God! So I am getting a break from chemo. I will go back for blood work and a follow-up exam on Sept 20, and every six weeks after that. They will monitor my CA-125 levels, which I am praying will stay low. Usually they see patients every 3 months, but she wants to see me more often since my cancer is aggressive. I feel so blessed to have all of you praying for me, and to have such minimal side effects from the surgery and chemo. The hot flashes are no fun, of course, and they keep me from getting enough sleep -- as does the neuropathy in my hands and feet (mostly feet). So I am pretty much tired all the time. But with God's help I get through each day. Oh yeah! I almost forgot to tell you -- my hair is already starting to grow back. It's very short and fuzzy soft, although it's a little patchy right now. I'm so excited! Hopefully soon it will look good enough to go without a hat or scarf. :) Thank you all SO MUCH for all your prayers. Please keep praying that the cancer will stay away, and that these side effects will get milder over time, so that I can get some decent sleep! Love and blessings to you all. Caroline <3