Bear One Another's Burden

I wanted to thank many of you for the sweet comments and emails I have received from you after my last post.  Knowing I have such a great support team like many of you helps make what I am going through easier.  I can truly feel your prayers and my burdens seem lighter.  I am happy to share what I am going through with anyone who would like to hear.  However at times it gets overwhelming repeating the same thing over and over and so that is why this blog is so nice.

If you want to be emailed each time I post an update on my health, then go to the top right of my blog where it says "FOLLOW BY EMAIL" and put your email address.  I don't know who is following, but I am happy to share my story.  It's not that I am any more important that anyone else, it's just that cancer is becoming so prevalent that maybe I can help make someone else's burdens lighter by sharing my journey.

Finding Peace in the Unknown

Dear Friends and Family,

I apologize for not keeping you more updated as to my health status.  However, life has been very full and this is the last thing that I have wanted to focus on.  But now as things are beginning to develop, I feel that I need to take you back a little and let you know the status of my health.  I will do that by including two update letters about my health.  One was written on 30 October 2013 and the other is written today, 21 November 2013.

30 October 2013

I went to the doctor today and had what will probably be my last infusion of the drug “Avastin” which is very sad news to me.  I have been receiving this drug every 3 week for almost 2 years.  I was told that I could be on this drug indefinitely, until the cancer came back.  I guess that time has finally come.

Here is a quick recap of my medical situation.  There is a blood test that they use as a tumor marker to determine if you have cancer.  It is called a CA-125.  Normal range is 0-35.  When I was first diagnosed with Ovarian Cancer stage IV in September of 2011, my CA-125 was 687.  On October 3, 2011 I then had a debulking surgery which included a radical hysterectomy, spleenectomy, 5 ½ “ of my bowels, 2 ½ “ of my diaphragm, and my peritoneal wall. After surgery my CA-125 numbers went to 350. 

At that time I qualified for a clinical trial and I started Chemotherapy on November 16, 2011.  At that same time I also started this experimental drug called, “Avastin”.  The trial that I was drawn for was to have chemo every week using a dose-dense amount (smaller dose of drug on a more frequent basis).  Usually chemo treatments are every 3 weeks for 6 different times.  But with this trial I started having chemo every week up until the 12^th week when the neuropathy in my feet became a stage 2.  I was pulled off that part of the trial hoping the neuropathy would get better, but it didn't.  So I finished with the traditional way with the last 2 sets of chemo (3 weeks apart).  My last day of chemo was the day after my 10^th grandchild was born, March 24, 2012.  However, I have continued having Avastin every 3 weeks since then.

Since that point I have been doing so well.  I have been incredibly blessed with energy and strength.  My quality of life is something I never dreamed I would have after my surgery and chemo.  I can’t believe the things I've been able to do and enjoy and I consider it a miracle from the Lord that I've had this time to enjoy.

After my surgery and once I started chemo, my CA-125 numbers started to go down consistently.  First to 165 then on down until it was a 10 in January of 2013.  We were thrilled.  Remember normal is 0-35.  Then I went to Vegas to help my daughter move and during that same time we were planning for a wedding in March.  I made 22 skirts for my daughter’s wedding and was amazed at the strength and energy I had to do all of this.  However, my numbers started to increase to 27 and then 53 and then 60.   Then the next 3 weeks they miraculous went down to 48.  Then I was in charge of a big reunion and they went up to 58 in June.  And then miraculous they went down to 43 in August.  In September they went up to 62 and then 3 weeks ago they continued going up to 82. 

I felt like I was living on a roller coaster.  Up and down, up and down.  It’s no fun having to live your life by numbers!  When I heard 82 I was in shock.  It was supposed to be time to come down again, but it didn't.  We fasted, prayed and I received a blessing three days ago.  In the blessing Craig blessed me that I would have peace and calmness.  He also used the same words that our Stake President used in a blessing he had given me about 18 months ago.  He told me that “my days are not numbered.” 

I have had peace and calmness, even as I went to my appointment today.  Not until right before they handed me the paper with my new CA-125 on it, did I start feeling knots in my stomach.  The nurse that handed me the paper was really kind.  She said in as sweet a voice as possible, “Your numbers have gone up quite a bit since last time.”  Then she handed me the paper.  I glanced at it and read the numbers 112.7.  All I could say was, “Wow!”  I’m glad no one said the numbers out loud.  I think that was easier for me to handle. 

I walked out of the clinic feeling like someone had just punched me in the stomach.  Here I was hoping for a miracle that my numbers would go down again, but they didn't.  It was starting to rain as I walked to my car.  I just felt numb.  I sat in my car for quite a while.  I felt like crying, but nothing would come out.  Finally a tear or two dropped from my eyes and then it was over.  Why cry over this?  Everything is in the Lord’s hand anyway.  Nothing I can do will change the outcome.  What I've got to do is to learn to accept the Lord’s will and make the best of the time I have left.  But that doesn't mean that I will ever give up hoping to be able to stay around as long as possible. 

So what is the next step?  I’m not exactly sure.  I was told that once I had 2 consecutive CA-125 tests over 70, that I would be kicked off the trial.  That just happened today, but the lady from the trial was not there to confirm it.  I’m sure when she sees my latest test, that she will call and let me know that it’s over.  So where does that leave me then…still in the care of my wonderful oncologist, Dr. Wallentine.  He has been taking care of me through all of this anyway.  He is not one to jump to conclusions too fast and I am grateful for that.

They just called and scheduled me for another CT Scan on Monday, November 4th.  Even though my numbers on the CA-125 test have gone up, my last CT scan still showed N.E.D. (No Evidence of Disease) which is good.  So I’m thinking that the doctor will gauge when I have to start chemo again by when there is new evidence of disease in my CT scan.  Hopefully that won’t happen for a while, and would be especially nice to wait until the holidays are all over.  However, I just talked to Kathy my nurse and she said that since I had the debulking surgery, that there is no tumor that they are watching at this point.  She said that my numbers are showing a pattern, probably indicating that the cancer is coming back somewhere.  The CA-125 blood test can detect cancer earlier before the eye can see it.  However, that same blood test is also known for going up for other things such as infection, virus, and endometriosis and such. 

It’s been interesting that the last month or so, I have felt very compelled to have a grandma date with every one of my grandchildren. I have made sure to document each of those dates with pictures and journal entries, not only for myself, but for their memory after I’m gone.  I’m started taking a Family History class in September and we have an amazing teacher named Ann Lewis.  She had us raise our hands and commit to writing 8 minutes a day in our journal for the next 4 months.  I am so grateful for this challenge.  It has helped me to correct my priorities and has seemed to help me focus on what is really important.  By writing every day, it has been kind of like a return and report system of what I am doing with my life.

I’m not saying I’m going to die right now, but I can’t help but know that it is definitely a possibility in the not too distant future. How do you live your life with that hanging over your head?  It’s harder than you can imagine.  Everyone thinks that if they knew they were going to die that they would automatically choose the most important things in life, things that have eternal consequences.  And that is what I am trying to do too, but life so often gets in the way; like cooking, cleaning, phone calls, emails, serving and just being.

So let me end on a positive note.  I’m so grateful for the Plan of Salvation!  What a comfort it should be for every one of us.  Knowing that we can all be together forever is such a comfort.  I’m also grateful for a loving Heavenly Father who is aware of me and knows what is best for me, even when I don’t.  What a blessing it is to have a Savior who has felt and experienced every feeling of pain, sorrow, and sadness we may feel with each of our unique situations.  I’m so grateful for the gift he gave each of us of being able to be resurrected to a perfect body.  I’m grateful that I still have a body, even in the condition it is in and the fact that I can still function and serve is so amazing to me.  I will not give up!  I’ll keep fighting just like everyone else would.  I've heard of people staying alive from chemotherapy to chemotherapy and prayers and miracles.  So whatever it takes, I’m in it for the long haul.  You haven’t seen the last of me!!!

Thank you for your continued prayers,

Michele Garvin

4 Nov. 2013 – update – They had me have another CT Scan today.  It also came back NED.  However, they have scheduled an appointment for Craig and me to meet with my doctor on the 21^st to discuss what protocol he wants to do now, since I am officially off the trial.  My nurse thinks that he will want to start chemo right away.  

Look on the Bright Side....

In regards to some of my recent health issues,

 this little song made me laugh!

Look on the bright side,

you're on the green side of the grass!

You're not six feet under,

Today is not your last!

Living life....one day at a time!

21 November, 2013 – Thursday

Craig and I just got back from seeing Dr. Wallentine.  I feel so blessed that I have not been nervous until this morning to see him.  On Tuesday morning I called the clinic and told them that I wanted to get another CA-125 before I had my consultation with the doctor as to what the next step in my treatments would be.  So I went in and had my blood drawn.

Today when we met with the doctor he told me that my CA-125 had gone up to 148.2.  Just three weeks ago it had jumped from 82 to 112 and now this.  It is definitely showing a consistent pattern.  I had a very strong feeling that it had gone up again, but I continued hanging onto the hope that it wouldn't.  I've been trying to prepare myself to have to start chemo again.  However it’s hard to want to when I still have so much energy and I keep getting new inspiration of things that I want to do and accomplish.  I have prayed that if there was some way I wouldn't have to do chemo this soon, to let it be possible if it was the Lord’s will.

Dr. Wallentine said that the CT scan showed no evidence of disease (NED), which meant that there is no tumor that we can watch and try to attack.  He feels that starting chemo right now would be just a shot in the dark, not knowing exactly just where the cancer to kill is. However, he said because of the consistent rise in the CA-125 it indicates that the cancer has returned and is back somewhere.  He feels that starting chemo right now would not be the best step to take at this point.

He quoted a study that has been done on those whose cancer has come back.  The study showed that those who started chemo immediately at the rise of the CA-125, compared to those who waited until there was evidence of disease, showed no difference in the effectiveness of the treatment in the long run. 

He said that there were 3 things we could consider doing. Even though I am off the trial now, he could administer the Avastin to me and see if the insurance company would pay for it.  I jumped in when he suggested this and said, “Well, it looks like to me that the Avastin is no longer working.”  He said, “Exactly my point.”

The second thing he suggested was that we just watch and wait for symptoms to show up or evidence of disease to appear on the CT scan.  Craig didn't like that suggestion at all.  Craig told the doctor, “The problem I have with that is that Michele has such a high tolerance of pain, that I’m afraid things would start happening to her, but that she would just dismiss them and it would be too late when we finally took her in.  Look at what happened when she was first diagnosed with cancer.”   

The third thing he suggested was for me to take a pill every day called “Tamoxifen”.  It is a hormone therapy and is classified as an “anti-estrogen drug”.  This drug has been mostly used for treatment with breast cancer, but has also been used like I used Avastin, to try and hold off the disease from returning so soon.  He said that by using this drug, we might possibly be able to experience two positive effects; one to slow down the growth of the ovarian cancer and 2) to slow down the possibility of getting breast cancer so soon.  The other upside to using Tamoxifen is that I won’t lose my hair right now!  Yeah!  There are other side affects with this drug but nothing I can’t handle.  Several of my friends who have had breast cancer have used this drug and have not liked it.  I’m hoping it was because they were young and not in menopause yet that the side effects may have been harder on them.  What people complain about mostly is menopausal symptoms such as hot flashes and mood swings, which I have already been thrown into.  (Poor Craig!)

We also discussed with the doctor my high risk of getting breast cancer.  For those of you who may not know, I tested positive for the BRCA 1 GENE.  It is the same gene that Angelina Jolie had.  Click here to read her story.

I have a 43% chance of getting Ovarian Cancer and an 87% chance of getting Breast Cancer before the age of 70.  I will be 56 in January.  Today we talked about the option of having a double mastectomy.  Dr. Wallentine said that because I am at high risk, he would love to see me get rid of my breasts.  But he also knows that the ovarian cancer I am battling is far more dangerous at this point. 

It was interesting that I felt no emotion during this whole appointment until he said, “You have fought a valiant battle with ovarian cancer and won.  But now it has come back and you are called to arms once again.  I don’t know if you are up to fighting this new battle as well as healing physically and emotionally from a double mastectomy.”  When the doctor said I had fought a valiant battle….I could feel my emotions begin to swell.  I tried very hard to not let them surface into tears.  I took his words of me fighting a valiant battle as a great compliment.  But I knew that I hadn't fought it alone!  The Lord has been by my side and has heard the prayers of my sweet family and dear friends.  I know whatever is in the future for me he will continue to help me fight those battles too.

It’s so weird writing about this.  It’s almost like I am interviewing someone who has this dreaded disease, but not me!  How could this be me, and yet I still have so much energy and life left in me?  My son Daniel just walked in and asked me how my doctor’s appointment went.  I briefly told him what I am telling you.  I could tell that it made him sad inside.  As he turned to leave I said, “Honey, we have just got to rejoice in every little victory.  I can’t look too far down the path or I will want to give up!  Right now I don’t have to start chemotherapy and for that little piece of good news I will rejoice!

I will start taking this Tamoxifen at the beginning of December and then I will see see the doctor in January. We will take another CA-125 test then and see if things are holding at a good pattern.  If so, I will keep taking these pills every day and see the doctor every 2-3 months.  Somewhere in there we will schedule a CT scan to monitor if there is any new evidence of disease.  Wouldn't it be wonderful to have a miracle and that this would work?  That is what our prayers will be.  But if not, we will still trust in the Lord and know that everything is up to him anyway.  What an amazing adventure this thing we call earth life!!!  Who would have known all that was in store for each of us!