Wednesday, November 26, 2008

Chemo in Two Weeks

The oncologist has given me the chemo plan now. I'll be getting Adroamycin and Cytoxan in 4 rounds that will span 3 to 4 months. I'll be starting the first round the week of December 15. After the baby is delivered, I'll probably be doing a third kind of chemo that can't be given during pregnancy. Dr. Cook (oncologist) warned that nausea will probably be a problem since I won't be able to use many of the anti-nausea medications. That was disheartening - I love Christmasy, fatty, salty goodies. I'm not supposed to eat those things anyway. Maybe I won't even be tempted.

My risk of reoccurance after the treatment is said and done is still almost 50%. That is not a pleasant thought. I've thought so many times over the last few days of the Bible verse, Hebrew 9:27, "It is appointed unto men once to die, and after this judgment..." We all know that reoccurance of cancer is usually deadly. But I'm no worse off than anyone else. We all have to face death. I just know what form mine has a good chance of taking. Christ has taken care of the judgment that comes after death and prepared a place for me.

I would really appreciate your prayers during the coming treatments. I am not looking forward to feeling sick for months; I would love to be free from the normal side effects.

Sunday, November 23, 2008

Final Pathology Report

The surgeon called on Friday to let us know the big final detail of the pathology report. The HER2/neu receptors that indicate the presence of a complicating gene in the tumor were absent. The additional testing that was done actually evaluated the DNA of the tumor to check for this gene. Those tests came back negative.

What this all means is that my cancer is not as aggressive as statistics for my age category indicated it would be. Initially, we were told that I would not live for another 8 months if we did not treat very aggressively. We were told that the baby almost certainly would not survive everything that was ahead.

My pregnancy is still a significant complicating factor, and there is still risk to the baby in the treatments. But the overall picture has brightened considerably since I was first diagnosed. My treatment options are limited because everyone is trying to protect the baby, but the options that are available look much more promising than they did at first.

I have been studying many treatment alternatives. The pregnancy limits those alternatives just as much as it limits standard treatments. We do have access to wonderful information and advice on nutritional support, and we're taking advantage of that. I would appreciate your prayers as we evaluate the information we'll be given this week. The Lord has put us in this place, and I know He knows what is best.

I bet some of you are wondering how I can continue to trust in a God whom I believe arranged this cancer and its complicating factors. That could require a long answer, and maybe sometime I'll try to say more about it. But for now I'll just say this: Everything I understand and control could be contained in a drop of water compared to the ocean of knowledge and power that God has. Also, I have become absolutely convinced of God's love for me (and for all of you too). When those two points of faith are combined, what's left to worry about?

Wednesday, November 19, 2008

Drains and Pathology

Today's been very full, and I'm tired, so maybe Jon will fill in more details tomorrow.

The drain was removed today!!! Several of you have told me you understand about those things - necessary, but truly a pain. Now I don't feel stomach-twisting movement beside my ribs and in my chest every time I move my arm, which still isn't very much.

We also got more partial results from the pathology tests. Estrogen receptors are positive; progesterone receptors are negative (a very good scenario). Cancer tissue is grade 3 (very deteriorated - been there a little while, but not uncommon). A test was being done on the tumor to determine the presence of a particular gene that can cause quite a problem. That test came back with an intermediate result (which really means indeterminate - they have to do more tests, and we wait some more days).

I found out that a resident surgeon who is very involved in my care is from Greenville, SC, and happens to know a high school friend of mine very well. Who woulda thunk it?

Sunday, November 16, 2008

Up and About

This is Amy. Now that you all have had the husbandly perspective of this, it's my turn again.

I really am feeling pretty good. I can only raise my left arm over my head with a lot of help from my right hand and only about once a day. It doesn't work very well on its own yet. At first my fingers were pretty useless, but that's back to normal now. Pain truly has been minimal - I haven't been being stoic. The worst part is that now that swelling has gone down and anesthesia is completely worn off, I can feel all the tubing that's still inside me. It doesn't hurt, but it's making me a little batty. The surgeon hopes to remove it on Wednesday if recovery is progressing sufficiently.

I did not go to church today. Some folks thought I was going because of Jon's comment about my being back at the keyboard soon. He wasn't talking about the musical keyboard (which I don't play very well), but about this computer keyboard. I had a relaxing day at home with my parents and a couple of friends who stopped by. I don't plan to go anywhere for quite a while, except doctors' appointments. Maybe I'll even skip those. The kids do have a play next Sunday night..... I'll be doing a lot of reading, as long as I can stay awake.

It's embarrassing to have details of my cancer and treatment spread all over through this blog, and I sure don't want to be offensive to anyone. I hope you all will understand that lots of people have the same (embarrassing) questions, and this is the best way to answer them. I guess that's the nature of my kind of cancer. As long as I'm the one posting, you can be sure I will skirt those questions as much as possible, but I can't say the same for my to-the-point husband.

So many of you have sent us cards and notes via this blog, CaringBridge, FaceBook, and email. I won't be able to respond to all of you, but I have read every note and appreciate you all so much. Thank you, thank you, for your care and concern for all of my family.

Saturday, November 15, 2008

Visitors OK

Sorry, I meant to mention last night for our local friends who have been asking - brief visits at home today will be OK. We had a great night's sleep and I only had to get up once w/ a sick child last night. Maybe that is passing away. Amy is doing incredibly well - looking forward to finally getting a shower - in a few minutes.

Friday, November 14, 2008

Moving along

Wow, you prayer warriors are really at work. Amy took ½ pain pill this morning at 7:30 and hasn’t wanted one since!

Our morning visit with the Drs went well – to a degree. Sometimes it feels a lot like Ping-Pong. They did remove the bandages and one drain; the other is still going to town. We were told that this was just going to be a 15 minute checkup, but when the whole surgical team came into the room (and brought a box of tissue) we knew something was up. (Actually that was a little bit of hyperbole).
They told us that part of the pathology report had come back already and contained some information that would be important to us. I will try to break all the technical stuff down into some simple info.

First of all the type of cancer found was one that finally takes the right breast out of the woods – that was a relief. For those interested in the stage of the cancer we now have a an official score. Five of the 15 lymph nodes removed tested positive – that moved us into a stage and treatment category. Officially stage IIIa and because so many lymph nodes were involved, radiation is a definite must after chemo.

There are still several test to be run that will clear up the treatment picture – basically to check on the hormone receptors and genes in the cancer. Those could come back in such a way that treatment and delivery could go on as previously thought. Please pray to that end.

We should know more by our appointments early next week. There is a whole gamut of meetings and appointments scheduled in the next couple of weeks – see the upcoming dates box on the right as you pray.

I won’t go into all of the what ifs and possibilities in front of us, just please continue to pray for the right results on the remaining pathological tests.

The surgeon also recommended some exercises for Amy to keep her shoulder from locking up ( I guess a fairly common problem after this kind of surgery) and she is already able to get her arm above her head. In fact she got her pajamas on alone tonight! What am I here for anyway? She is doing incredibly well on the physical side. Drs were pleased w/ what they saw today and we are aware of the wonderful prayer structure that is lifting us before the throne of grace in many ways.

Amy may even be doing well enough to take over at the keyboard tomorrow.

Thanks again to all of you, the notes and comments are more blessing than you can imagine and are truly treasured.

Be back soon, Jon

Thursday, November 13, 2008


Well. not as shortly as I thought.

Amy is soaking in the tub (thank you Mrs. Senn for the bath basket) sipping tea (thank you Diana) and enjoying music (thank you Grinnells) – while her drains sit in a floating bowl. Her hair was washed earlier in a proper beautician’s chair (thank you Jen). And her stomach (and the rest of ours as well) filled w/ a wonderful supper (thank you Alicia).
God has gifted us w/ such wonderful friends – thank you to all of you. The picture hanging over the bed was a pleasant surprise when she came home – thanks to our Indian friends.

The surgeon’s reports this morning were encouraging. They are sure that they got all the tumor from the breast – there was good separation from the chest wall and also from the skin. They lymph nodes are more difficult, but they got all they could find. Now we wait several days (at least until Monday) for pathology reports. That will determine the kind and intensity of follow-up treatment. There is still a possibility that radiation may be indicated immediately which is a problem for the pregnancy. Please pray that this will not be the case.

The drains (installed in/for the lymph system are already slowing dramatically – a good thing. When there is less than a 30 ML collection in a 24 hour period they can be removed. I just emptied 43 ML from drain 1 and 10 from drain 2 (that one may get to come out in our morning visit w/ the surgeon).

We go in early tomorrow to check the bandages (no showering until those come off), incisions and drains.

The doctor also prescribed half doses of pain medication (because of the pregnancy) and Amy has been doing fine, even stretching the time between pills already. Thank the Lord for help and relief in that area.

Doc says that the first 48 hours are the most critical to baby – keep praying about that.

We still have not heard about the lung x-rays – maybe tomorrow.

The children were thrilled to see Mommy home and everyone is tired and will sleep well tonight I am sure. As soon as she can get back to this Amy will give you her side of things, but the left arm and hand aren’t exactly working properly so we will see.

We are again and again overwhelmed with gratitude to the Lord and to His wonderful body around us. Praise to Him and thanks to you all.

Good night,



We're home - more shortly, Jon

Wednesday, November 12, 2008

From Jon

Hi friends,

Thanks so much for your expressions of care and intercession on our behalf. Someone must be praying while we are sleeping because we have been sleeping well.
Just a quick update on today then Amy will pick back up and fill in details.
This AM was a little tough emotionally, but God is great and His presence and care are great stabilizing anchors.
We were called at home w/ results from the blood work – everything looked great so the liver is safe. Once at the hospital the surgeon reviewed the biopsy w/ us and those results were negative so we get to keep the right side for now!
These were two exciting encouragements for which we praise the Lord. Pray that the lung x-rays and the pathology reports on the removed tumors will be as good – thanks.
Surgery went well – no complications and no premature contractions – so one hurdle is over. Amy is physically stable – pray for the rest and recovery. If all goes will we will be released in the morning.
Amy sends her love and gratitude to all – I do too.
I almost included a picture of Amy in her pre-op outfit w/ the little silver warming cap – but… well, we don’t want any other amputations so...
Talk to you all again soon, love, Jon

Out of surgery...

Thank you so much to everyone who prayed throughout the day...

We heard from Jon a little bit ago. Amy is out of surgery, and the doctors feel it went well. He had not seen her when we spoke last. They will most likely not recieve the pathology reports until Monday.

Tuesday, November 11, 2008

What Was I Scared Of?

To all those who prayed today - thank you. When the office called to schedule these procedures (core needle biopsies), they assured me their doctor is very skilled and I would be very comfortable. I assumed they were just trying to relieve my nervousness. I've already had fine needle biopsies, and that was uncomfortable. But the doctor truly was very careful, and to my surprise, I didn't feel a thing. But that needle thing sounded like a staple gun!

I went back to the oncologist's to complete preliminary tests. Yesterday they drew eight vials of blood, and today I had chest x-rays. These tests will help determine if the cancer has spread to my lungs or organs. I'm not having symptoms of that, but it's good to make sure.

Tomorrow, we check into the hospital at 12:00 p.m. and surgery is scheduled for 2:00 p.m. I should be released by 12:00 p.m. on Thursday. Healing is required for a month, then chemotherapy.

Yesterday, we got to see the baby pretty clearly. Its heart is beating, and its growth is normal. Seeing our child made me feel like I'm really pregnant.

I don't know when I'll write again. Maybe Jon will update this blog to let you all know how things went and if we have any more answers.

Biopsies Today

A very quick update before we head back to St. Joe's. Yesterday we met the OBGYN for a run-of-the-mill initial pre-natal visit. I'll be seeing the high-risk doctor another day. Today I am going to have those biopsies I thought I had avoided. There will be at least five, probably more. More later...

Saturday, November 8, 2008

Some FAQs

How far along is the pregnancy? 8 weeks. The due date is June 20, but the baby will probably be taken early, perhaps as early as 30 weeks. That would put the baby’s birth sometime in April.

Why is my case considered a-typical? I technically was not at risk for breast cancer, and I have some protective factors. The risks indicators I don’t have: a family member who had breast or ovarian cancer, over 40 years old, overweight, diabetic, hormone treatments. The protective factors I do have: regular exercise, nursed 6 babies, excellent health over-all.

How are the kids doing? Generally, pretty well. Cara has shed the most tears, but she also is able to soak up comfort easily.

How is Jon doing? He has been wonderful. We’ve both had our hard times, and we both turn to the Lord for comfort and leading. I’m thankful for him.

How long will my treatment last? It’s hard to know until all the biopsies and surgery are done, but the oncologist thinks about 12 months.

What is my prognosis? Won’t know until all the tests come back.

Am I going to donate my hair? I’ve donated my hair three times already to Locks of Love. Do I have to do it again? When the time comes, I’ll donate it before it all falls out. My sweet sister (on the left) has offered to shave her head and donate her hair to my wig. picture – May 2008

How long will I be in the hospital after the surgery? The mastectomy is actually outpatient surgery. I was envisioning a two-hour procedure and then being packed off home to recover. Although it is considered outpatient, I will be in for at least 24 hours.

Is any family going to be here? My mom is flying out on Monday and will be here until December 2. My dad will come too, but he’s still working on tickets. Teresa (my sister) will join us for Thanksgiving week. We’ll be well taken care of.

Friday, November 7, 2008

Shopping is always fun

Cara and I went shopping last night. She had some birthday presents to get, and Jon and I are working on brightening up our bedroom. We had a really good time and were able to find what we were looking for. We also went to see some friends - a very pleasant time of fellowship.

The evening out helped to calm some of the knots in my stomach. The Lord helped me to see again that He has planned every tiny detail of the path we are walking. Maybe you'll laugh (I did), but a Scripture passage that jumped out at me yesterday morning was Matthew 10: 29-31. Now, I know you'll all run to look it up to see what made me laugh.

Okay, okay...I'll save you the trouble. Jesus was talking to his disciples. "Are not two sparrows sold for a farthing? And one of them shall not fall to the ground without your Father. But the very hairs of your head are numbered. Fear not therefore; you are of much more value than many sparrows."

So, a new take for me on numbering my hairs. Losing my hair has been a touchy subject. And God cares about that. By the way, I found out that the American Cancer Society will provide me with two free wigs. I wonder if God counts fake hairs?

Thursday, November 6, 2008

Surgery is scheduled

The surgeon's office called this afternoon to let us know the surgery is scheduled for Wednesday at 2:00 p.m. I will be in for at least 24 hours. It doesn't look like biopsies will fit in before then, which is fine with me. Those are done without much anesthesia - ouch. I will be having blood work and possibly x-rays on Monday morning.

The thought of this surgery is turning my stomach. It's a hard step to take, but everyone I've talked to (both traditional and alternative) has agreed it's the best thing to do considering the complications of pregnancy.

First Visits at St. Joe's

We started our appointments yesterday at 8:00 a.m. and continued until after 5:00. The first appointment at the OB's ended up being entirely paperwork, but we have another visit scheduled for Monday. We wouldn't have been able to get in until later December, but there was a cancellation.

The surgeons were next. This was my first meeting with these surgeons, and it was very encouraging. Their outlook on the chances for both me and the baby were brighter than what we had been hearing. Their greatest warning was that general anesthesia this early in the pregnancy could cause me to miscarry. They are planning to do another series of biopsies, hopefully before the end of the week, and then surgery would be scheduled for sometime next week. Everyone agrees it would be unwise to delay the mastectomy another 5 weeks to give the baby time to develop more. The head surgeon was so kind to me when she told me not to be hard on myself for not having the arm lump checked out sooner. (The lump that was biopsied has been there for about 2 1/2 years.) She feels like this cancer is relatively recent - probably appeared shortly before I noticed that lump enlarging. She said slim people, especially women who have been nursing, tend to have more prominent lymph nodes. If she was just trying to make me feel better, it worked.

After lunch we met with Dr. Cook, the oncologist. Again, because of a cancellation, we were able to get in right away. Otherwise, we would have had to wait until next week. She was gentle and informative. The information she gave us was even more encouraging. Several types of chemotherapy are available during pregnancy, although radiation is not. Having surgery next week would work perfectly with the timing she has to observe. Surgery requires one month of healing before beginning chemo, and she can't give the chemo anyway until I'm in my second trimester. The timing would work together so I can start treatment at the earliest possible point. She also told me that since my case is very a-typical, it will be presented next week at a conference of surgeons and oncologists at St. Joe's, so lots of doctors will have their eyes on it.

Last of all, we met with the cancer patient navigator. Her whole job is to help us get around the twists and turns of cancer treatment and take advantage of available resources. That also was a very encouraging meeting.

I don't have an official prognosis yet. I am supposed to be having blood work and limited x-rays to help determine how far the cancer has spread. They know it is in at least two lymph nodes, because we can feel those - surgery will tell more. The stage of the cancer will be determined after all the tests, biopsies, and surgery. The oncologist thinks it is at least stage 2, very possibly stage 3. She was calling it a grade 3 cancer (which refers to something different), but then kind of backtracked because of the lack of information on the pathology report.

Our friends and family have been so helpful in every way. Amy Bixby, the first, (there are two of us) got this blog set up for me. Several people have offered their frequent flyer miles to our families so they can come out here. Someone loaned me an iPod Shuffle loaded with Jim Berg's "Quieting a Noisy Soul" and lots of music. A friend gave us a CD changer with remote control for our bedroom. We've received several uplifting CDs. And so many people have written to tell us they are praying. That is the best of all. Until you are facing something like this, you don't know how good it is to know that others are praying.

Ambertose, Xango, hyperbaric therapy, volcanic clay, red grapes, vitamin C therapy, others I can't remember at the moment: these are alternative remedies that have been recommended to us. We are checking them out. I'm already taking Ambertose, Xango, and a friend has a hyperbaric chamber. I won't tell you who it is in case all of you want to come use such an incredible health booster.

I apologize to those who have sent me messages on Facebook. I can't reply to messages consistently because of some kink. But I've read all of them and wish I could respond. And to everyone who has left us notes here - Thank you. You are all a blessing.

Monday, November 3, 2008


Yesterday, our church friends were such a blessing. Everyone made us feel surrounded with love and care. We went to sleep listening to a CD given to us by a friend, and we listened to another one this morning right after we got up. Thanks for all the comfort you all are offering us.

The significant happening of the day was that THREE of our children lost teeth (Cara, John, and Eliana). The tooth fairy, who has taken up permanent residence in our home, slept late this morning. Recently she has been somewhat overwhelmed at the possibility of becoming the fairy for additional lost body parts. Anyway, she had to quickly recruit help to reach the recently de-toothed children in our home. Everything was cared for in good time.

Saturday, November 1, 2008

The Beginning

A while ago I found a lump under my arm that seemed to be growing. I wasn’t very concerned – after all my risk of breast cancer is practically non-existent. Dr. Roland was concerned though, and helped us schedule an appointment with a surgeon. He also told us that I’m pregnant. For those who have lost count, this baby is our seventh. (I got rid of all the baby stuff almost three years ago.)

The surgeon called last Sunday afternoon (October 26) to let us know that the biopsies he had performed showed malignant cells. He also took the time to let us know that my pregnancy provides the worst possible complication to cancer treatment and survival. He provided more details than I care to share, or even than I remember. Monday was filled with tests that confirmed the biopsies.

My care has been referred from Lutheran Medical Center to Saint Joseph Hospital (St. Joe’s to everyone around here). St. Joe’s is one of the few hospitals that receives funding from the Susan G. Komen foundation (the pink ribbon people) for breast cancer treatment, and they offer high risk obstetrical care. This transfer of care has slowed the initial process of determining the stage of cancer progression and treatment plans. I have several appointments at St. Joe’s this Wednesday, November 5. We hope to gather lots of information that day. Many complex decisions lie ahead. The Lord has made Himself so near to us during the very difficult moments of the last week. Please pray that I will keep my focus on Him; everything else is too overwhelming.

Our church and friends have leapt to our assistance. We are amazed at the care and love that everyone is offering to us. Thank you.