Off the Grid

So here's the short of it,

I'm beginning to surface this evening after a few days of nothing but sleep and illness.

And here's the long

Wow, I finally feel like I'm back in the land of the living.

For the last few days, I've been absolutely laid out! I've had ferocious diarrhea each time I try to eat or drink anything, and have slept almost 16 or 18 hours of every day. Today, my doctor called in a more potent anti-diarrhea medicine, and before it even got here I began to feel better - better enough to actually try to eat something. I think I've lost several days, I actually don't know how many. I don't really have anything to report except that long dark sleep of illness, waking only to turn and find a more comfortable place to fall back into sleep.

There of course have been short periods of time with my family trying to give me comfort and nourishment or short communications with friends or trying to get something to stay inside me long enough to provide sustenance.

I am hoping that tomorrow I'll be stronger and my brain will be more engaged in the world.

Thanks to everyone who has expressed concern.
I am so grateful to each of you for all your care.

So here's the short of it,
What a sleepy day.

And here's the long

This morning I woke up feeling a bit of nausea. I did exactly what all the doctors and nurses have been telling me to do, and took a dose of medicine. I wasn't nauseated - but I've slept almost all day long!

Alan is leaving in the morning for a visit with Shelley and Lou and Max, our first grandchild. A few months ago, we were planning this to be a trip we would take together. I'm sad that I can't go - but am glad that he is going.

I'm planning to take it easy - not get into anything heavy!

So here's the short of it,

I've been very tired today with some continuing flu-like symptoms.

And here's the long

I didn't sleep well again last night. Up at about 3 o'clock for nearly 3 hours. I just got on up and continued reading a wonderful book called The Middle Place . Thanks Wanda, it's just what I needed to get me through a sleepless night! I did finally go back to sleep and slept in very late for me.

Today I have been awfully tired, and I continue to have some flu-like symptoms. However, I'm not having any fever, so that's a good thing. I am alternating between chills and hot flashes. It seems that I can feel my skin, it's a very strange feeling. I have been faithful about taking my anti-nausea medicine, so that's not been a problem. I have had a bout with constipation that demanded prunes to solve, followed by diarrhea which was solved by the doctor ordered dosage of Immodium AD.

This afternoon Alan went with me for a very short grocery trip to bring in some things for next week. Just two bags of groceries and a very short time in the store and I was exhausted! I've not gotten the hang of an afternoon nap, but I'm going to keep working at that.

I think the thing that is most difficult for me right now is not going to the hospital to visit my Dad. I know he understands, and I know I'm doing the right thing, but I do so want to see him.

So here's the short of it,
I've had flu-like symptoms most of the day, but no fever.

And here's the long
Today I really began to feel the side effects of the treatment. I have alternated between having chills and feeling like I'm running a really high temperature. However, my thermometer shows that my temperature is really normal.

I thought I'd venture out so Liga took me to lunch up the road at Chili's, it was nice to have some girl time, but when we left I was really feeling dizzy. She had to let me hold on to her to make it to the car. Besides, nothing really tastes good anyway. So the lunch was wonderful because of the company!

I've banished myself from going to see Dad right now. I don't need to be exposed to any of the germs that might be up on the 6th floor. I really missed going to see him today, even though Mom and Steve brought me the news of the day.

I thought that this afternoon, I'd just go take care of my grocery shopping. I did not make it! I was way too tired and felt too weak. I did take a walk around the circle with Alan, but one trip around was plenty for me this time. Here's to hoping that I'll be stronger tomorrow.

Treatment Regimen

So here's the short of it,
It will take a year, 52 weeks ,to complete this part of the treatment. Yesterday counts as week 1 so I'm down to 51 weeks.

And here's the long
Every week for the next 51 weeks, I'll have an infusion treatment. My medicines are TCH, Taxotere, Carboplatin, and Herceptin.

Every 3 weeks I have a "long treatment" which has all of those medicines. That is what I got yesterday that took from 9:30 to 2:30 or 2:45. All together I have 6 of those treatments. The intervening weeks when I'm not getting all the drugs, I get the Herceptin alone. That one is much shorter. We'll know next week how that one goes. They monitor the rate of the drip and slow it down if necessary. Then after the "long treatments" are finished I continue to get the Herceptin drip weekly until reaching week 52!

Since I have an intravenous drip every week for 51 more weeks, I'm sure glad to have the port (even though it is still very sore and tender).

Last night I was up at 3:00 AM and my body just felt like it was buzzing. I took that as a very good sign that the drugs are doing their job. So I just sat in the den reading and feeling this amazing sense that the medicines were zooming about my whole physical body!

Today I am thankful that I have the privilege of living in a time when medicine can give me a year of treatments and kill any rogue cancer cells that didn't come out during the surgery.

1st Chemotherapy

So here's the short of it,
Today was my first chemotherapy treatment, and I did fine with it.

And here's the long
Alan went with me as a second pair of eyes for all things medical (he's phenomenal at that stuff), and more importantly as my trusted companion.

We got settled in at about 9:00 and Lori (my infusion nurse) spent a good long time telling me exactly what to expect. She loaded the IV up with a bunch of anti-nausea medicine, and with Benedryl to try and ameliorate the effects of the Herceptin. The benedryl made me quite drowsy, so I really had one of those drug rests for a good part of the morning. The infusion room is set up in such a relaxed way. Alan was able to sit with me and visit when I was awake enough. Lori was exceptionally attentive. In the early afternoon I had a little party! My brother Steve and his wife Pat and two of their grown daughters, Lauren and Sarah, and my Mom were coming to the hospital to visit my Dad, Gene, who is currently in the Intermediate care unit at Erlanger. Alan met them and brought them up to Dr. Schlabach's office and we got to sit and visit for a good little piece of time. Since there were not many patients there today they were able to pull up chairs and so there we were! I was not nearly so sleepy by that time so it was a good visit.

Ok, gory detail warning for those who want to skip this paragraph,
For some reason the medicines made me have to pee! I'll bet I had to empty my bladder 8 times while I was there. So the process was just to get up and trail my lV pole along and walk over to the bathroom. I know that having the port in was a big help in this part of the endeavor. I could actually use both hands for managing the zipper and button, and for pulling my pants up and down. When I've had IV's before, they like to put them in my hand and which would have made all that maneuvering much more difficult. Also, Alan brought me a canned diet coke because I was thirsty. Some of you sisters who have already been through this probably warned me about this....it just tasted like liquid aluminum (or my imagination of that).

By the way, even though it was an infusion and I'm not scheduled to see the doctor on those days, Doctor Schlabach came back and spent a little time chatting, it was very apparent that he was giving me the clinical eye to see how well I had tolerated the treatment. He thought that the standard treatment was a good choice for me, and he did tell me that by the time I am through with this treatment, there may be a clinical trial that would be appropriate for me regarding the Lapatinib or another targeted drug that is now in very early trials.

It's now 8 hours since I finished the infusions and I can certainly feel the medicines coursing through my systems. right now I can feel a flush in my ears. Earlier all across my chest, another time all across my lower back, through my gluts, and down the upper part of the back of my thighs! I've also got some of those minor symptoms now - chills, a little dizzy, but it's all OK, I'm fine right now.

I am thankful for the staff at the University Oncology practice. Every single person I have met there has been absolutely amazing.

So here's the short of it,
My port is in and I am fine.

And here's the long
I am home and awake. My port is in. It's a little achy, but I'm really fine. I was scheduled for 2:30 this afternoon and so of course, I couldn't eat or drink from midnight until after the surgery. Boy was I ever hungry about 12:30 or 1:00 this afternoon! My midnight yogurt and peaches were long gone!

Everyone on my surgical team was just great this afternoon. The OR nurse and the Nurse Anesthetist spent some time talking with me before the surgery and were just great. The OR nurse told me more about what was going to happen to me during the whole process than anyone ever hqw before. Dr. Witherspoon as always, was great; she stopped by just a few minutes before I went back to chat with me. She left the needle in the port since tomorrow morning I go in for my first chemo treatment tomorrow morning and apparently it would be a little too sore to put it in tomorrow.

So it was successful!

Last night and this morning were pretty stressful with stuff going on with Dad.
It's so hard to see my strong, outgoing Dad barely able to move his arms and on a ventilator. He is so brave, so patient, and so wonderful. Today I went to see him before my surgery and I asked him to say a prayer for me before I had my procedure. He did "say" a prayer.
More on Dad at his blog for those of you who are following.

Thank you for your support.

Big Girl

So here's the short of it,
I think I've found my "big girl panties".

And here's the long
Yesterday I was talking with my dear friend Wanda and I think I was sounding a bit whiny or maybe a bit overwhelmed about all that's going on. So when I said something about the port, she told me it was time to get my big girl panties on. Her 3 year old granddaughter has a port and does just fine, thank you very much. Funny, today the hospital called me to tell me not to eat after midnight and all that stuff, and they told me to wear cotton panties to the surgery. Well, I guess I could count cotton panties as "big girl panties!"

Anyway, I took Lola (our cat) to the vet today and she did not like it one little bit. She tried every corner in the examination room to escape - including trying to crawl into the paper towel dispenser. Of course it didn't work. She still had to have that yucky ordeal of getting her temperature taken and getting her shots. She's home and doing just fine and doesn't even have the cognition to know that was all to help her stay well. So I won't be looking for an escape route tomorrow or Thursday.

I have a Lola story to tell tonight. When I don't get Lola's food dish filled up soon enough to suit her, she will always bring one of her small toys, like a fluffy chase ball or little catnip mouse, and put it right in her bowl. It's her signal to me. This morning she had put her little green catnip mouse right near the place where we kept Suni's bed.

OK God, I think I've had my quota

So here's the short of it,
I had a great appointment with a counselor to begin to work on stress management today.

And here's the long
Last week when I saw my primary care physician, she suggested that I meet with someone to work on some stress management techniques. I didn't hesitate - I'm probably as stressed as I've been in a long, long time! So today I had that appointment. I will be working with Nora Moore for awhile to learn some of the techniques she has in her bag of tricks. It was a great first visit, and I feel like she'll be invaluable to me as I negotiate the next weeks and months.

She suggested that it was time for me to say, "Ok God, I think I've had my quota." That just hit the mark. It has felt good today to just say that, to just know that.

Now that I've made my decision to get going with the standard treatment things will move pretty fast. My port goes in Wednesday, and Thursday morning I'll have my first chemotherapy treatment.

Today I am so grateful for all of you who have been so supportive.
I am so lucky to have family and friends and friends who are like family who keep me so encouraged.

One Decision Done - others can wait.

So here's the short of it,
I have decided that I will not participate in the ALTTO trial.

And here's the long
Thanks to all of you for your comments and support in my efforts to make the decision about whether or not to participate in the ALTTO trial or choose the standard newer chemotherapy treatment.

My thought process centered on the trial requirement for the original chemotherapy to include the "Red Devil" drug adriamycin . The heart damage that it sometimes causes is irreversible. I know that I want to defeat this cancer, but I don't want to end up with heart failure in the battle. And the herceptin that is so effective against the HER2 already has some heart damage potential, although it does appear to be reversible.

The other really strong reason is the 25% possibility that I wouldn't be getting any herceptin at all if I landed in the Lapatinib only arm of the trial.

So one more time, thanks to each of you for the ways that you supported me in making this decision.

Haircut and Stuff

So here's the short of it,
I got my hair cut pretty short yesterday.

And here's the long.
With all that's going on, I was way overdue for a haircut. The hairdresser I've been using for the last year or so had a bad accident and is unable to use her left hand, and besides, I really haven't been focused on getting hair done. So yesterday she arranged for a young friend of hers to give me a haircut under her direction.

I decided that I wanted to go ahead and get it cut short. The doctors have all told me that it's possible I won't lose my hair, but it's highly likely. Really short will be better if it starts to fall out. So Amanda began to cut my hair and I felt like it wasn't going to be short enough, so I rather flippantly said, "just cut it off really short since it's all going to fall out anyway." In the mirror I saw her stop and look at me with a puzzled look. So I said, "I'm going to start chemotherapy and it's probably all going to fall out." Amanda just broke into tears and hugged me and said, "I am so sorry." Well, that made me cry. So here we are at the hairdressing chair - a young girl who doesn't even know me, crying about what I'm facing - and me, the one who has worked hard to face this all without tears, red faced with tears streaming down my face.

It took us both a bit, but we pulled it together and she gave me another hug and a great short haircut. So now that's ready!

I'm so thankful that there are so many people who know me, and even those who don't, who are there to support me, talk with me, and like Amanda, just appreciate how hard this is.

So here's the short of it,
Today I went to a different medical oncologist for a second opinion.

And here's the long
I thought that I might need to hear another opinion about the chemotherapy options so the wonderful people at Erlanger helped me get in to see another medical oncologist for a second opinion.

I saw Dr. Larry Schlabach and I've found my match for a medical oncologist.
He was amazing. The very first thing he did was to reassure Alan and me. His explanations were thorough and matched our level of understanding of cell biology and such. And he really inspired confidence in me. Of course he also has the ALTTO trial. He has a somewhat different take on it than the other office. He has concerns that the trial uses adriamycin. It is a very harsh drug that is no longer used in the standard treatment for HER2/NEU breast cancers. It's sometimes called "Red Devil" because of its color and its harshness. I was also interested that they would give the Herceptin infusion every week instead of every three weeks, because that is what the trial that proved it effective did.

I have to have an answer by Monday. I still don't know, but I'm feeling calmer about it all.

Suni

So here's the short of it,
Our sweet dog Suni died this morning about 2:30.

And here's the long
Suni was a great companion. We will miss her terribly.

Opinions

So here's the short of it
I have an appointment for a second opinion from a medical oncologist tomorrow morning.

And here's the long
Alan and I stopped at Erlanger's Breast Resource Center this morning between my doctor visit and going up to visit Dad in the Intermediate Care Unit. It was a worthwhile visit! Janet suggested a second medical oncologist opinion. Of course several of you have suggested that as well, but she helped me make that happen. So tomorrow I'll have an opportunity to do some more exploration about the ALTTO trial and the other option.

Our wonderful dog Suni is not doing well at all today.
I am sad that she is so sick and nothing we do seems to make a difference.

Musical Hearts

So here's the short of it
I'm pretty tired.

And here's the long
Alan and I spent most of the evening with my two brothers, my Mom, and my Aunt creating what the Shepherd Spine Center calls a Home Care Plan to show our commitment to bring Dad home after he completes his stay there. It was a monumental task and very sobering.

Our precious dog, Suni, is very sick again. Our vet has run some blood tests and urinalysis and thinks it's liver related. About 3 or 4 months ago she had an episode like this and recovered and has seemed so healthy! Now, it's really sad to see how sick she is.

Today I had my first echocardiogram. The ultrasound wand had to go right over the surgical site. I was really worried that it would be very painful, but it was OK. At one point, the technician turned on the sound to hear the heart. So get this, each one of our heart chambers has its own specific sound. The technician says each valve and each chamber in the heart has a different job to do and so each of them sound a bit different. I kept thinking that if we could hear all the sounds our bodies make it would be such an amazing symphony. Maybe the great musicians of the world somehow tap into those internal notes.

I have an appointment next week to have my port installed for the chemo and/or herceptin portion of my treatment protocol.

I'm still trying to do my homework to make a decision about the ALTTO trial. I spoke to one of the research nurses today and she answered a couple of questions. Am I closer to a decision? NO! Thanks to all of you who sent me your opinions - even if they were something like - oh my, I have no idea what I'd do!

The continued support of my family, friends, and work colleagues is keeping me going.

ALTTO

So here's the short of it
Today I spent the morning reading about the ALTTO trial.
My Dad's situation still weighs heavily on my heart.
I still don't know.

And here's the long
Tomorrow I'm scheduled for an echocardiogram. Some of the medicines that will be used during my treatment protocol have been known to cause heart problems. They will be evaluating me to see if my heart is strong enough for this ordeal. Of course I won't get any results tomorrow. This is another one of those things that makes me pause.... There is some history of heart disease in my family. I would never have had a doctor order an echocardiogram if I were not getting ready for this chemotherapy! They will also do several follow ups over the next year(s). So I guess I have to say that in some ways I'm really lucky.

I am still quite conflicted about whether or not to participate in the ALTTO trial. The herceptin (trastuzumab) has reduced recurrence of HER2/neu cancer by 50%, but you know that means that some women still have it come back. The Lapatinib (Tykerb) is being used for women who have advanced HER2/nue cancer and the trial that began studying this drug was cut short early so that all the women in the trial could get it because it was so successful.

The two drugs attack the cancer in different ways.
HER2 positive breast cancers make too much of the HER2 protein. Herceptin blocks the activity of the HER2 protein on the outside surface of a breast cancer cell while lapatinib binds to the HER2 protein component inside the cell. Because of this difference, lapatinib represents an alternative way of blocking the HER2 pathway. It also blocks the HER1 pathway, so may cause a more complete blockage. These two differences mean it may work when cancers have become resistant to Herceptin.

I know that neither option is God's promise.
I'll sleep on it another night.

Once again, I'd welcome your opinions.

Check out Dad's progress at Emily and Gene's blog

Help Provide Free Mammograms

So here's the short of it
You can help provide mammograms for women who can't afford them.
It's easy and it's free.

And here's the long

Here is a link which you can use to help provide free mammograms for women who cannot afford them.

http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2

or

Provide free mammograms for women .

Put this in your favorites and once a day click!

Here's how it works:
Once you access the website, your click on the "Click Here to Give - it's FREE" button helps fund free mammograms for women in need — low-income, inner-city and minority women whose awareness of breast cancer and opportunity for help is often limited. Your click is paid for by site sponsors, and mammogram funding is provided to clinics throughout the U.S. through the efforts of the National Breast Cancer Foundation.

THANKS!

Dad

So here's the short of it,
I've been at Erlanger most of the day.
Tomorrow I'll spend the morning doing some research on the ALTTO Trial which I've been invited to join.

And here's the long
The long of it today is all on my Dad's blog!
We spent most of the day at Erlanger. Tomorrow we have an appointment with a liaison from the Shepherd Spinal Center, where Dad is being considered for admission.

I had an appointment with my primary care physician, Dr. Johnson, before I went to the hospital. She is so encouraging. I really like her bunches! I've got an appointment with a caregiver in the practice, Nora Moore, to help me with some stress relief strategies.

Today I am so grateful for Alan.
He has been such an enormous support in this unexpected turn for my Dad.

Opinions Welcome

So here's the short of it
I meet the qualification to be in the ALTTO Clinical Trial, or I can choose the standard chemotherapy treatment.


And here's the long

The indications for chemotherapy which are present in my cancer are marked *

Less than 35 years old

*Tumor larger than 1 cm

Lymph Node positive for cancer cells

* Grade 3 cancer

* Proteins expressed (Estrogen Receptor, Progesterone Receptor, Her2/neu

So I have 3 out of 5 and should get chemotherapy.

If I choose the standard chemotherapy it would go something like this, as I understand it right now.

For 6 months I would receive an infusion cocktail of Taxotere, Carboplatin, and Herceptin (Trastuzumab).

Then Herceptin would continue as an infusion for a year.

Herceptin is the drug I raved about in an earlier post as a new weapon against Her2/neu cancers which are a bit nasty...

If I choose the clinical trial ALTTO it would go like this.

ALTTO’s Structure

The ALTTO trial will randomly assign 8,000 people from 50 countries to one of four treatment arms:

• Trastuzumab (this is Herceptin) alone, given intravenously (by IV) once weekly or once every three weeks for 52 weeks.
• Lapatinib alone, given as a pill once daily for 52 weeks.
• Trastuzumab for 12 weeks, followed by a six-week break, followed by lapatinib for 34 weeks.
• Lapatinib and trastuzumab together for 52 weeks.

Some people also will receive paclitaxel (brand name: Taxol) chemotherapy each week during the first 12 weeks.

Before starting the trial, participants will have already completed surgery and chemotherapy with an anthracycline (doxorubicin [brand name: Adriamycin] or epirubicin [brand name: Ellence]). They will be followed for ten years after the start of treatment.

Lapatinib is already FDA approved and being used for HER2-positive advanced (metastatic) breast cancer. So no one gets a placebo in this trial.

I still have lots of reading to do to make this decision.
Anyone who has thoughts about how to make this decision (besides flipping a coin), please speak up!

Doctor visits

So here's the short of it,
Today I had two doctor visits. One with my surgeon and one with my medical oncologist.

And here's the long
My surgeon says I'm healing nicely and that she's not at all surprised that I feel like the left side of my chest was run over! I am still very swollen and bruised. The swollen part is why I don't really look much different right now! The stitch ends came out today and the rest will dissolve. As for addressing my continuing discomfort, she did say that many of her patients go to Intimacy, a store in Atlanta that specializes in fitting bras. Apparently many of her clients have told her that the fitting they do has made them much more comfortable. Let me be clear here - she also said that many of her patients had found good fitters in the department stores here in Chattanooga...and she was very clear that she was only passing along information from patients, and not making a medical suggestion. I definitely think it would be worth a visit to the Intimacy store the next time I'm in Atlanta.

Dr. Witherspoon is such a wonderful doctor. I will have to say that I would recommend her to anyone without one ounce of hesitation! Today she spent some time talking to me about my Dad's situation and I so appreciated that time.

My next step was the Medical Oncologist, Dr. Derek Holland. He was very patient and spent a good amount of time talking us through the next set of decisions. It seems I have a couple of choices in my treatment. I definitely meet the criteria to have chemotherapy. I can do the standard treatment that the practice is using now, or I can join a trial called Altto. He says that he is excited about the trial and biased toward it. I have lots of information to read about both possibilities, and in the next day or two, I'll post some description about the options. In the meantime, I will have an echocardiogram, and I will have a port surgically implanted (warning, warning, Will Robinson, the link I just provided contains pretty graphic images of a port in a cancer patient!)

In the meantime, my Dad is still in the ICU at Erlanger. He has limited mobility at this point, he's on a ventilator, and he's developed pneumonia.

I'm actually doing a better job of keeping his blog going than this one.
If you want to check in you can find it here.

As always, your support and prayers are so appreciated.

Check Gene's progress at the new blog

So here's the short of it,
We have created a blog so that those who are interested in following Gene's progress can do so. Check it out here. emilyandgene.blogspot.com

And here's the long

So many of you have asked about Dad, that our family has decided to open a blog devoted to times present and past from the lives of Emily and Gene with a focus on his recovery progress.

My Dad is a strong, courageous man.
Alan and I had the privilege of visiting a 5th grade classroom in Bastogne, Belgium the year after Dad and Mom had been there. One of the young boys asked, "Do the people in your country consider Mr. Howard a hero like we do?"

I know as a culture we have a fascination with science fiction heroes. Gene Howard is a true Jedi Knight! This latest incident just shows me once again what a brave and courageous man he is.

Visit the blog.
Pray for Dad.