until God says I'm not.
That is something Tim said a lot when we were dating. It has stuck with me. It's so true. Don't we all think "that will never happen to me!" But the unexpected does and then our faith is truly tested. How will I respond to this shocking news?? Will I turn TO or AWAY from God?
I just got news that a fellow CTCA patient died on Saturday. Tim and I met her and her husband in June when we went for our first visit. Annika and Jay live in Utah just 20 minutes west of us. Their parents live a couple blocks from us. Annika and Jay have 5 children between the ages of 5 and 16. Please pray for them. I don't even know what to think. I have so many questions for Jay but not sure how and when or IF I should even ask.
My trip to CTCA last week was loaded with appointments. I got to meet with a gastroenterologist (GI) who is from Beirut. I tried my rough Arabic hellos and how are you on him and he was surprised. We spoke of Beirut and strangely I was comforted by the fact that we had that part of the world in common. He called to tell me that I have an overgrowth of bacteria in my gut. This may be causing the bloating, gas and constipation. He recommended a very strong and expensive antibiotic. I have to see if our insurance will cover it:-)
My CA125 is up again 869. I have to realize it's just a number. I still feel good praise to God! I also have to accept the fact that --unless God heals me completely from this disease during my life on this earth-- I need to say yes I have cancer and yes I have to do x, y, z in order to manage the symptoms and to try and keep this nasty disease at bay.
Still seeking God for His divine direction...
Highlight of my month -- David says, "I love you brighter than the sun, mommy!"
Monday, February 3, 2014
Friday, January 24, 2014
How Time Flies!
January 24, 2014.
A be-lated Merry Christmas and Happy New Year to you!
I can hardly believe I have not updated this blog for a couple months. Thanks to all of you who continue to read and pray for me/us:-)
Last IV chemo was Oct. (that was number 6 I believe)
In Nov. I started on Avastin alone. My numbers went from 255 to 320 to 730. So apparently it is not doing what we had hoped. So my last visit Jan 3, Dr. put me on oral chemo to go with the Avastin which will still be IV form every 3 weeks. No side effects to be expected from the oral chemo because the dose is so low (50 mg/day compared to 1,000 in the IV form). He also mentioned that this is for "quality of life" since the IV chemo tends to put a damper on my lifestyle for a few days.
I started oral chemo Jan 4. I have had no side effects. Since about November I have had a nasty mucus buildup in my sinus -- is it the weather or the Avastin? Now my head is fuzzy. I think it's the weather (or "inversion" as they call it here) in beautiful Salt Lake. I stopped the oral chemo, per Dr. so they can evaluate me when I return Jan 28.
What are other options? Once again I am contemplating an alternative "treatment". Has anyone heard of Protocel? Can you give me any feedback? I realize that diet alone is not helping my particular cancer. If diet alone is the "cure all" perhaps I didn't give it long enough. Maybe I need to throw some alternative "medicine" in the mix.
What do I have to lose? If the conventional path is only chemo. I don't see that as a very viable answer. Yes, it did help shrink the tumors. Has it brought me into remission? no. Would it if I kept taking it? Perhaps, but along the way it may leave permanent damage to my organs. What's a girl to do??
Praying and asking for God's guidance and wisdom.
I would like to hear from you:-)
A be-lated Merry Christmas and Happy New Year to you!
I can hardly believe I have not updated this blog for a couple months. Thanks to all of you who continue to read and pray for me/us:-)
Last IV chemo was Oct. (that was number 6 I believe)
In Nov. I started on Avastin alone. My numbers went from 255 to 320 to 730. So apparently it is not doing what we had hoped. So my last visit Jan 3, Dr. put me on oral chemo to go with the Avastin which will still be IV form every 3 weeks. No side effects to be expected from the oral chemo because the dose is so low (50 mg/day compared to 1,000 in the IV form). He also mentioned that this is for "quality of life" since the IV chemo tends to put a damper on my lifestyle for a few days.
I started oral chemo Jan 4. I have had no side effects. Since about November I have had a nasty mucus buildup in my sinus -- is it the weather or the Avastin? Now my head is fuzzy. I think it's the weather (or "inversion" as they call it here) in beautiful Salt Lake. I stopped the oral chemo, per Dr. so they can evaluate me when I return Jan 28.
What are other options? Once again I am contemplating an alternative "treatment". Has anyone heard of Protocel? Can you give me any feedback? I realize that diet alone is not helping my particular cancer. If diet alone is the "cure all" perhaps I didn't give it long enough. Maybe I need to throw some alternative "medicine" in the mix.
What do I have to lose? If the conventional path is only chemo. I don't see that as a very viable answer. Yes, it did help shrink the tumors. Has it brought me into remission? no. Would it if I kept taking it? Perhaps, but along the way it may leave permanent damage to my organs. What's a girl to do??
Praying and asking for God's guidance and wisdom.
I would like to hear from you:-)
Wednesday, November 6, 2013
CTCA
Cancer Treatment Centers of America is a fantastic place to receive
treatment for cancer. It is truly patient focused. They actually use a holistic
approach although this approach centers around toxic drugs. it's a relaxing place to recover.
I appreciate being able to go to CTCA. It’s an experience
filled with mixed emotions. It’s like a healing resort – beautiful grounds,
comforting facility intentionally decorated to lift ones' spirit, soothing color scheme, carpeted hallways and offices, open spaces, a player piano in the lobby, friendly, supportive staff, fabulous cafeteria with many organic foods,
body/hair salon, smoothie bar, Starbucks café, rooftop seating, chapel,
library, exercise room, etc. etc.
I have met many people each with their unique stories. There is a mix of happy and sad stories.
This cancer disease is such a mystery. Many stories contain
the words – they got it all. Then it came back. This is a plague that the
medical field still can’t quite completely understand or treat successfully.
I see familiar faces each time I return. Some have changed –
the skin color is more yellow or gray, people losing weight, people in wheel chairs, more hunched over, frail, etc.
I wonder if I will be like that in the future. Going through the fight of
cancer, while the body is slowing failing. Ughhh.
I am so very grateful that I feel good. I am gaining weight
(because of my overindulgences I am sure). My tumor marker has come done a
little since my last visit. It was 294 and now it is 255. It’s slow, but the downward
trend is positive. The doctor still wants me to do a few more chemo treatments,
but we decided to do avastin only this time. We will see what my blood work
looks like after this treatment and figure out is I should stay on avastin only
or return to chemo. It’s nice to have break from chemo. I return to the center
after Thanksgiving.
Please pray for the many people who I have met here. So many
women who are single and going through this alone. It breaks my heart. I don’t
think I could do this alone.
One single lady I met belongs to a large church in Oregon and
they have only been to visit her once. No one has organized meals for her, help
with yard work, or someone to look in on her each week. I just want to invite
her to move in with us and let us love her through basic needs. I pray the body
of Christ will see the needs of the hurting people right inside their church or
neighborhood and begin serving them.
Monday, October 21, 2013
4, 5, & 6...
Chemo 4 went well! I actually stayed awake during the infusion. The first 3 I fell asleep during the whole infusion and then I am so tired afterward that I need a wheelchair down to the front door.
My dear friend Melissa drove up from the Tucson area to be me caregiver! what a blessing she is! Thank you Melissa Bush!! We got to spend some fun time together, reminiscing and talking about our current lives and dreams. I woke up from chemo infusion refreshed and ready to go.I flew home the day after treatment and had lots of energy and an ability to drink much more than usual after chemo.
Chemo #5 was a very similar experience, praise God!! I was without a caregiver, but it was probably my best experience. I knew that God would be with me because he promises that He will never leave me or forsake me. I had an overwhelming peace and joy treatment # 5 that continued during my days of recovery.
Treatment #6 was a special treat...my mom flew in from Indiana and drove with me, Tim and David down to Phoenix. We stopped at Bryce Canyon (of course it was closed thanks to our "government shutdown"). We were at least able to go to the rim and take a look down into the canyon. We drove onto Flagstaff for 3 days not sure what we would do if the Grand Canyon didn't open. Friday night we got word that Arizona was given "permission" to open its National Parks. So we got to spend Saturday, October 12 at the Grand Canyon. This was my 50th birthday!! What a special treat for us.
From Flagstaff we mosied down to Sedona for a quick lunch and Trolley tour. Absolutely gorgeous scenery. god is so amazing. How can anyone deny his existence?
We made it to Phoenix Sunday night. My appointments started at 7 am Monday morning. Ct scan showed a reduction in tumors. Actually the doctor said that he couldn't see any tumors. My CA125 is still higher than normal but down since the last treatment. they are 295. The Dr. is amazed that my numbers are high but my tumors are unseen. He says this chemo is working for me. He recommended 3 more chemo treatments or just continue on Avastin. We chose Avastin. My recovery from chem #6 has been slow and sluggish. More fatigue and more nausea.
We headed back to Salt Lake Tuesday afternoon. We stopped at the Hoover Dam, then stayed in Henderson for the night. I was tired. Sitting in a car sure can wear me out. I didn't get much exercise time in and I think that contributed to my fatigue.
I hope to post pictures soon!
Thanks for continued prayers!!!
My dear friend Melissa drove up from the Tucson area to be me caregiver! what a blessing she is! Thank you Melissa Bush!! We got to spend some fun time together, reminiscing and talking about our current lives and dreams. I woke up from chemo infusion refreshed and ready to go.I flew home the day after treatment and had lots of energy and an ability to drink much more than usual after chemo.
Chemo #5 was a very similar experience, praise God!! I was without a caregiver, but it was probably my best experience. I knew that God would be with me because he promises that He will never leave me or forsake me. I had an overwhelming peace and joy treatment # 5 that continued during my days of recovery.
Treatment #6 was a special treat...my mom flew in from Indiana and drove with me, Tim and David down to Phoenix. We stopped at Bryce Canyon (of course it was closed thanks to our "government shutdown"). We were at least able to go to the rim and take a look down into the canyon. We drove onto Flagstaff for 3 days not sure what we would do if the Grand Canyon didn't open. Friday night we got word that Arizona was given "permission" to open its National Parks. So we got to spend Saturday, October 12 at the Grand Canyon. This was my 50th birthday!! What a special treat for us.
From Flagstaff we mosied down to Sedona for a quick lunch and Trolley tour. Absolutely gorgeous scenery. god is so amazing. How can anyone deny his existence?
We made it to Phoenix Sunday night. My appointments started at 7 am Monday morning. Ct scan showed a reduction in tumors. Actually the doctor said that he couldn't see any tumors. My CA125 is still higher than normal but down since the last treatment. they are 295. The Dr. is amazed that my numbers are high but my tumors are unseen. He says this chemo is working for me. He recommended 3 more chemo treatments or just continue on Avastin. We chose Avastin. My recovery from chem #6 has been slow and sluggish. More fatigue and more nausea.
We headed back to Salt Lake Tuesday afternoon. We stopped at the Hoover Dam, then stayed in Henderson for the night. I was tired. Sitting in a car sure can wear me out. I didn't get much exercise time in and I think that contributed to my fatigue.
I hope to post pictures soon!
Thanks for continued prayers!!!
Tuesday, August 20, 2013
Treatment #4 coming up.
What can I say in 5 minutes or less? Thank you friends and followers for encouragement and prayers!!
Going in for 4th treatment. After the 2nd treatment the numbers have come down to 695 from 1320. That is good news. I will have a CT scan Monday Aug 26th to see what the tumors look like on the inside. I still feel the lumps in my armpits. I hope the scan shows so much progress that the doctor will shorten the # of chemo treatments!!! I am supposed to have 6 total.
I truly believe that God can heal me. Whether or not it His will for me to be healed physically on earth or in Heaven I do not know. I am sure that He has His reasons for this trial. I don't like it, but I do trust His will for my life.
How do you live each day as if it is your last? Or, the month or year? What does it really look like when you have daily responsibilities? How to make memories and document them while you do have energy to do it?
After chemo I have about 8-10 days of fatigue, nausea, and depression. I need prayer to drink, drink, drink. I can't seem to even drink a glass of water per day and I NEED 60 oz. per day.
I have gone off the wagon of my wonderful, strict diet. Do I feel better -- not really. My joints ache, I have gained weight and my skin is breaking out again. Time to get back to good nutrition but I am rebelling against the only thing that I think is in my control. Bring on the Turtle cheesecake and Chocolate Chip Cookie Dough ice cream!!!
Always appreciating prayers,
:-)
Going in for 4th treatment. After the 2nd treatment the numbers have come down to 695 from 1320. That is good news. I will have a CT scan Monday Aug 26th to see what the tumors look like on the inside. I still feel the lumps in my armpits. I hope the scan shows so much progress that the doctor will shorten the # of chemo treatments!!! I am supposed to have 6 total.
I truly believe that God can heal me. Whether or not it His will for me to be healed physically on earth or in Heaven I do not know. I am sure that He has His reasons for this trial. I don't like it, but I do trust His will for my life.
How do you live each day as if it is your last? Or, the month or year? What does it really look like when you have daily responsibilities? How to make memories and document them while you do have energy to do it?
After chemo I have about 8-10 days of fatigue, nausea, and depression. I need prayer to drink, drink, drink. I can't seem to even drink a glass of water per day and I NEED 60 oz. per day.
I have gone off the wagon of my wonderful, strict diet. Do I feel better -- not really. My joints ache, I have gained weight and my skin is breaking out again. Time to get back to good nutrition but I am rebelling against the only thing that I think is in my control. Bring on the Turtle cheesecake and Chocolate Chip Cookie Dough ice cream!!!
Always appreciating prayers,
:-)
Saturday, June 15, 2013
Chemo to begin again
I am heading back to CTCA in Phoenix on Thursday. I hate to start chemo, but I really don't know what else to do!! The doctor says it's so aggressive and we need to reduce the tumors to side track the tingly feeling that has recently started in my lower legs and arms.
The oncologist says I have platinum refractory ovarian cancer which I think means it is resistant to platinum-based chemotherapy -- which is what I had from January to September of 2012. I never reached "remission" and so that is what our goal is now. He has devised a concoction of Carboplatin (the platinum-based chemo I had before) in conjunction with Gemzar (chemo) and Avastin. Our goal is to get the CA125 down to the "normal range" within 6 treatments and then stay on Avastin for a year. My treatments will be once every 3 weeks, just like before.
They assure me that they have had much success in keeping nausea at bay by using nausea patches, and of course, synthetic medicine. Ughhh! I really don't want this option, but I just don't know enough to do anything else. I am really at the mercy of the doctors.
thankfully my sister will join me at CTCA on Friday.
Appreciating prayers, advice, encouragement, etc.
The oncologist says I have platinum refractory ovarian cancer which I think means it is resistant to platinum-based chemotherapy -- which is what I had from January to September of 2012. I never reached "remission" and so that is what our goal is now. He has devised a concoction of Carboplatin (the platinum-based chemo I had before) in conjunction with Gemzar (chemo) and Avastin. Our goal is to get the CA125 down to the "normal range" within 6 treatments and then stay on Avastin for a year. My treatments will be once every 3 weeks, just like before.
They assure me that they have had much success in keeping nausea at bay by using nausea patches, and of course, synthetic medicine. Ughhh! I really don't want this option, but I just don't know enough to do anything else. I am really at the mercy of the doctors.
thankfully my sister will join me at CTCA on Friday.
Appreciating prayers, advice, encouragement, etc.
Monday, June 10, 2013
2nd opinion at CTCA
Cancer Treatment Center of America...so far the experience has been quite good. We have been treated as queen and king. Really. It's a relaxing place, lots of activities planned, good food to eat, smoothies to drink and lots of lattes! Our transportation is free and available to drive us just about anywhere. Our hotel is super nice and just a stone's throw across from CTCA.
We arrived Thursday night. Tests were performed Friday. I have a few pages to share on this blog about the actual details--only cause i want people to know and I want to remember!! but that will be my next blog:-)
Quickly I want to share that my CA125, although tested just under a month ago, is still climbing - it is now 1,730. WOW!! or UH OH! It's always a surprise to hear a higher number especially when i think I have done a "good" job NOT eating the things I want to eat:-)
The CT Scan shows tumors in my lymph system in the abdomen, in my left neck area and under both arms. This is discouraging (very discouraging) news. It seems that our option is going to include chemotherapy - again. We will meet with another oncologist, the naturopath, the nutritionist and nurse educator on Wednesday for a detailed plan of treatment.
Asking for prayers, as always, to be brave, to live each day, to allow God's will with grace:-)
We arrived Thursday night. Tests were performed Friday. I have a few pages to share on this blog about the actual details--only cause i want people to know and I want to remember!! but that will be my next blog:-)
Quickly I want to share that my CA125, although tested just under a month ago, is still climbing - it is now 1,730. WOW!! or UH OH! It's always a surprise to hear a higher number especially when i think I have done a "good" job NOT eating the things I want to eat:-)
The CT Scan shows tumors in my lymph system in the abdomen, in my left neck area and under both arms. This is discouraging (very discouraging) news. It seems that our option is going to include chemotherapy - again. We will meet with another oncologist, the naturopath, the nutritionist and nurse educator on Wednesday for a detailed plan of treatment.
Asking for prayers, as always, to be brave, to live each day, to allow God's will with grace:-)
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