It's Over, It's Done, NO MORE CHEMO!

Finished my final chemo treatment just about an hour ago. I made it through the worst part. Even the surgery seems down hill now. I've chosen to take 6 months of private guitar lessons as my reward. (I'm rewarding myself as I make it through each milestone). Anyone know any good guitar teachers who are near HEB area and not too outrageously expensive? Also, may need to be flexible on schedule due to surgery and rads coming up.

Chemo, Chemo and More Chemo..

Really starting to get tired of this! This one wasn't too bad due to the multiple medications I was given to combat the nausea, vomiting, GERD, heartburn, and gastric emptying issues... but still I'm really ready for this to be over. I just have to make it through one more and I'm done with chemo.

I really need to be working on the surgery portion now. I don't even have a surgeon picked out yet. I'm thinking about calling some of the ones my brother and my great aunt suggested. I'm wishing I hadn't had the falling out with the one who did my biopsy now. I think I'm going to have the lumpectomy and have it done locally. The reason being is the drains. Even with lumpectomy, I will have to have drains. Drains are necessary when you have lymph nodes removed. It's gross to talk about, think about, and probably deal with.. if you want more info on drains, look up "lymph node removal drains". Sentinel node biopsy is NOT an option for me, as I have a confirmed Axillary node. There may be one or many that will be removed. They will not know until they do the surgery.

On another note, this experience is really teaching me to receive. I have always been the one who does things for other people, gives etc. Now I'm having no choice but to receive, accept help etc. It has definitely renewed some of my faith in people. Thanks to those of you who have done things to make this easier.

Anxiety

Seriously dreading this treatment tomorrow. I have a longer than normal consultation scheduled with the Oncologist. I'm wanting her to give me so statistical data to help me psychologically force myself to go through these next 2 treatments. The last one was so awful, I'm really not wanting to go through the last two. I'm popping xanax like candy today and hoping the sleeping pill will knock me out and put me out of my misery for the evening. Seriously dreading hanging over the toilet for the next week....

Bone Pain

My neutrophil% was low yesterday(.4 and should be over 1.0) when I went in for my weekly CBC, so I had to get a Neupogen shot. The shot will make my bones produce more white blood cells, which should bring up my neutrophil%. I had to get another one this morning. The shots are thick and burn when they go in. They usually give them in the stomach because there is more fat tissue there, but I managed to talk them into giving it to me in the arm. The Neupogen shots have one major side effect - bone pain. Yesterday I had a little, today I had a lot. My lower back felt like someone hit me with a 2 x 4 until I took an 800 mg Ibuprofen. The Ibuprofen seems to have taken care of it.

I went to see my gastroenterologist today regarding the acid reflux, heart burn and gastroparesis I have been experiencing after this round of chemo. They put me on 40 mg of Nexium TWICE a day, and gave me some Reglan to take as needed for the gastroparesis. I'm hoping it will help make the next chemo treatment easier.

New diagnostic tool detects breast cancer much earlier | News | Star-Telegram.com

Interesting article in the Star Telegram... I'll have to talk to my oncologist about this. Thanks Christine!

New diagnostic tool detects breast cancer much earlier | News | Star-Telegram.com

Rejoining the World of the Living

I decided it was time to rejoin the world of the living today. For the first time since chemo on Tuesday, I put on something other than sweats, put on some make up and did something with my wig. Stomach is still rather queasy, but feeling a little better.

Quick Update

Sorry I haven't updated. This round has been by far the worst. I've had nausea and vomiting every day since the treatment. The first two days were particularly bad. The anti-nausea medicine has not been working. For the first few days food seemed to sit right above my stomach and refuse to go down. This caused major acid reflux and made me pretty miserable. Now the nausea isn't so bad, and the food seems to be going down. The acid levels seem pretty high. I'm taking double doses of zantac to control it. I'm really ready to be done with this!

Burned Out

I bailed out on chemo today. I just couldn't do it today. After the last round being so bad, and only having a few days of feeling good, I just couldn't get myself to go. Now I'm feeling guilty about it, because I know I need to do it, if not for myself, but for my daughter, my husband, my family and those who care about me.

The fatigue is just so extreme that I'm really having a hard time forcing myself to go. Jesse called to see if they could do anything about the extreme fatigue, and they said there's really not much they can do. They said I could take the weekend off and reschedule for next week and it wouldn't hurt anything, so I guess I'll do that.

They said that there is a shot for the anemia that might help, but it takes a couple of rounds. I'm not sure if I want to do that or not, I'll have to research it and see what the side effects of the shots are. If they aren't too bad I might consider it. Rather frustrated with myself now for bailing out, but I just didn't have the strength today. I'm so tired of being sick, feeling helpless, having a messy house, and eating fast food. I'm tired of not being able to do things with my daughter. Today, I just want this to go away because I'm really tired of dealing with it.

Hopefully Uphill from Here

I think I made it through the worst of this round. If I could just shake the sinus infection I seemed to have acquired over the weekend, I think I'd feel pretty good. I went in for my weekly CBC today, and luckily my immune system didn't take to bad of a hit. The stat they use to measure is called the absolute neutrophil count (ANC). This is a measurement of your bodies ability to fight infection. Since chemotherapy attacks the good cells with the bad, many people end up with an impaired immune system. They told me the number to watch for is 1.0. At 1.0 they refuse to treat and make you wait for it to recover.

I am at the beginning of my nadir, which is the low point, or point at which your cells are most susceptible to the chemotherapy, and my ANC was only 1.9 on todays CBC. The nurse assured me that my immune system was fine to fight infection at this level. I was thankful that I had refused the preventative Neulasta shot they had recommended. Neulasta is a drug they use to force your bones to make more white blood cells. I have read it is incredibly painful, causing severe bone pain for long periods of time. I also read a study the other day that showed that taking the preventative shot rather than waiting and taking the shot as needed, only provided less than 10% decrease in persons requiring hospitalization for infections. As long as my ANC stays decent throughout this, I won't have to go through the bone pain the shots cause, and won't be at risk for hospitalization either. And again, I can always get another medicine that boosts for a shorter period of time as needed(Neupogen), which is the method that sounds the best to me. I have enough drugs in my system with out adding unnecessary ones into the mix.

FEC Update

First of all, I want to let all of you know that I appreciate the support you have given me during this difficult time. The cards, emails, comments, phone calls and prayers really help! Special thanks to:

Kim Hatley - even with her mom in the hospital, she took the time to send me a card. It came at a really good time yesterday and made me smile.

My Chemo Angels Pam & Kim - I appreciate your weekly cards, letters and gifts!

My husband - Thanks for dealing with everything this weekend so I could rest! I had carefully planned several activities for this week thinking I wouldn't have chemo, but due to the flu delaying my chemo by a week, he got stuck dealing with all the things we had planned that I was too sick to deal with.

My Facebook friends - Thanks for your supportive comments!


I am still feeling a little under the weather today. I tried going without taking the Zofran for nausea this morning, but started feeling nauseous after eating. Luckily, the Zofran seems to be working well for me. I haven't actually gotten sick yet, just had the nausea. A little less fatigued than I have been today, which is a good sign.

So Far So Tolerable...

Well, I completed my first round of FEC. I am positive I WONT be able to drive to and from these should the need arise. I was high as a kite after one of the meds and having trouble walking. By the time it was time to go, I did manage to make it to the car.

From what I've been told, the major side effects won't kick in until tomorrow morning. They gave me an anti-nausea med (Aloxi) in my IV prior to chemo infusion. They told me to make sure to take an oral anti-nausea (Zofran) to back it up tonight at bed time or if I start to feel the least bit of nausea, whichever comes first. I took the Zofran around 1pm. They also said I could stack the different anti-nausea meds if I still felt nauseous 30 min to an hour after taking the first one. So I took another anti-nausea med (phenergan).

The nausea I am exeperiencing so far isn't that bad. They just want me to curb it before it becomes bad. The best way I can describe the way I feel right now, is that it is similar to car/motion sickness you get in a badly ventilated vehicle if you get stuck the back seat for hours. I feel lethargic, yucky and slightly nauseous. The main difference being that I can't just get out of the car and get some fresh air to fix it. I dread what it will be like tomorrow morning if it's this bad now!

Dreading Chemo

Enjoying my last day of freedom, but my anxiety level is high. I'm dreading starting the new round of chemo tomorrow. According to the nurse, the worst side effect is nausea. We spent the last few days moving to the master bedroom which has a bathroom attached. We had been using the larger bedroom in the house, but decided the one with the bathroom would be nice to use during this time. I spent an hour or so cleaning up the bathroom and making sure it was spotless so it wouldn't be too unpleasant if I had to spend a lot of time there.

The bedroom looks nice now. We pulled out the carpet and padding and put down wood laminate. I haven't had a chance to paint it yet, but I am planning on doing that during my good weeks. I'm thinking I'll decorate it in a nautical theme since we have a lot of nautical style items leftover from the main bath's makeover that aren't in use. We got all our furniture moved into there yesterday and slept in there last night.

We picked up some beds for the dogs today and we are going to try to get them to sleep in the beds rather than on the bed with us. I think we'll all sleep better if we can achieve this.

Anyhow, I guess I'll spend the rest of the night stressing out about the chemo tomorrow. I'm sure it will turn out to be less of a big deal than I build it up to be, but I can't help but worry. I'm sure it will be a restless night for me. If I'm not hugging the toilet tomorrow, I'll write an entry and let everyone know how it went.

Chemo Put Off For A Week

Chemo has been put off for a week due to my daughter having the flu. She has been running fever for two days with coughing and congestion. I took her in this morning and they confirmed Influenza A, which is most likely Swine Flu. They took a sample from me and mine didn't show flu, but I have had a cough and some fatigue, so they are putting us both on tamiflu. They took a second swab sample and are sending both off to CDC for confirmation. We should know for sure in about a week. I haven't talked to the nurse over there to find out if it's a big concern for me with my immune system being strained from the chemo, but I have a call in and should know more later.

Katie is doing well. She has her energy and is going stir crazy having to be stuck in the house and limited on what I will let her do. How is it that kids can get so sick and still have all that energy? You would think a 100 degree fever would wear her out!

Enjoying My Vacation

I'm enjoying my week off. Starting to feel like my old self again. I have a CBC blood test tomorrow, but other than that I am chemo free for another week. I have been keeping pretty busy. My grandmother was admitted to the hospital about a week ago with blood clots and sepsis. They got the sepsis eliminated and they are giving her meds to thin her blood out and slowly remove the clots. I spent several days up there this week trying to catch the doctor to ask a few questions and I finally caught him today. Advocating for her has helped me to keep my mind off of my own health issues this week. I also got to spend some quality time with my mother.

Last night we went to the Paint the Town Pink forum at Will Rogers Memorial Center. It is a yearly event sponsored by the American Cancer Society. They had vendors set up at tables from various cancer organizations, cancer supply stores, and cancer treatment centers. After that, they had a full buffet dinner and several speakers. The event was free to all. There were at least 500-600 people there. We really enjoyed it and I think it will become an annual event for us.

Taking a Vacation from Cancer

Last week we celebrated Katie's 9th birthday. I had my sister plan the party for us, since I didn't think I'd have the energy. She did a wonderful job. We had it at a free party room they offer at Richland Hills Church of Christ. She rented a bounce house, created some delicious (and beautiful) cookie/ice cream cakes (Katie doesn't like regular cake), had a pinata, created and bought some great decorations, and obviously spent much time planning and worrying, not to mention doing it all on a really tight budget. I really appreciate ALL of her efforts! Thank you so much Jaclyn!

Tonight, I celebrate the end of my first round of chemo and the good news I received earlier this week regarding the tumor. We will be going out to eat at Kobe's Steaks and I am really looking forward to it. Tomorrow we are taking Jesse's 67(?) Mustang out to his Mother's house for storage. We have been working on turning our carport into a garage and will no longer have room for it here. We will be there overnight and be back Sunday afternoon/evening.

Next week, I have decided to take a vacation from cancer. I only have one lab next week and no chemo treatments, so I think I am due for a vacation. It will be nice to not get knocked down and get a chance to feel good for a full week. I am going to try to avoid thinking about it or dealing with anything to do with it. I don't know if that is possible, but I am going to try.

The following week, I start my FEC chemo treatments. I am a little scared to start these. I have heard they will have more side effects. I'm hoping the drugs they have provided me for nausea will be effective. I am glad they are only once every three weeks. The weekly treatments were really getting old. I should be done with my chemo treatments before Christmas. I believe they give you a month off before surgery, so I shouldn't be having to worry about surgery until after New Years. It will be nice to be able to enjoy the holidays.

MRI Results - Good News

I just received my MRI results. The tumor has shrunk significantly. They said the first time it was so large and merged into my normal cells they weren't able to measure accurately on MRI, but this time they were actually able to differentiate the tumor from the normal breast tissue and it's down to 1.2cm x 1.3cm x 1.3. I know on the last ultrasound it was around 2.1 cm x 1. something... so I'm pretty sure they are accurate on this one.

Anyhow, good news today. This also buys me some time to make decisions on the surgery. I will have one more Taxol Thursday, lab only next Thursday(Yay! a week off with no chemo!), then start my FEC (5Fluorouracil, Epirubicin and Cyclophosphamide) chemo the following Thursday.

MRI Results

Just talked to a nurse at Dr. Krekow's office (my oncologist). I'm not going to have MRI results until late Tuesday or early Wednesday. The waiting is going to drive me insane!

Also, haven't heard nothing back from either of the two people at MD Anderson who were supposed to be looking into my question. However, I did receive a phone call from a Patient Navigator at the American Cancer Society. She told me to call her tomorrow if I didn't receive the call backs I expected today. She is not sure what she can do, but is willing to try to advocate on my behalf.

More Frustration at MD Anderson

Here's a log of the last week and 1/2 I've been fighting to try to get a simple answer to the question: "Do the radiologists at MD Anderson feel they can effectively screen me after lumpectomy?"


9-14-2009
Called and spoke to someone in screening department at MDA. They told me I had to go through my primary doctor out there, which is my oncologist Dr. Pusztai.

Called and spoke with Gina Garcia, Dr. Pusztai's nurse. She said to send an email using my.mdanderson.org to Dr. Pusztai explaining in detail what I was requesting.
Sent email to Dr. Pusztai, return receipt.

9-18-2009
Received a call from Gina Garcia saying that Dr. Pusztai had read the email and agreed that they couldn't help me with this unless I came in and made an appointment with Dr. Pusztai. Explained to her that I was currently in weekly chemo treatments locally and that I only had a week to make a decision. She sent me back to screening.

Called my patient advocate at MD Anderson Sonya Tucker and left a voice mail explaining my situation.

Received return receipt for email AFTER phone call with Gina Garcia

9-21-2009
Called Sonya Tucker again, since I hadn't received a return phone call. Someone paged her and I was able to speak with her directly. She said she would take care of the problem by emailing radiologists and speaking with Dr. Pusztai's office. She said she would call back on 9-22-2009.

9-22-2009
Waited for call from Sonya Tucker. Did not receive a call.

9-23-2009
Frustrated and fed up, I asked Jesse to advocate for me. He called back to advocacy office and spoke with someone named Luz. She said she would make sure Sonya Tucker called us back.

9-24-2009
Received phone call from Theresa. She said to call my breast surgeon's office (Dr. Fieg) and speak with his nurse Tina Miller.

Jesse called back to advocacy office and spoke with Luz again. She said she would have Sonya Tucker's supervisor, Michelle Walker call us back.

Called American Cancer Society and asked if they had any external advocates who help with this type of situation. They said they would have a patient navigator call me back in 1-2 days to see if they had any ideas.

Called Dr. Fieg's nurse, Tina Miller. She said she would email radiologist who read the diagnostic mammograms and ultrasounds I had done in August and see if she could get an opinion from them. She says she will call back in 1-2 days.

Received another call from Michelle Walker. She was trying to get me to come in next week to discuss all this. I explained to her that I can't. That I didn't feel it was necessary since I'd already consulted with a breast surgeon while there. She seemed to think I needed a consult to discuss my surgical options again. I told her I was well researched and understood my options, and that I had already consulted with a breast surgeon down there already. I told her to think of it as a post office visit question. I also told her if it was a matter of money, I'd pay for an office visit. At the end of the call she said she'd try her hardest to get me an answer. Hopefully she will...

9/28/2009
Received a phone call from Maegan Jansen, Patient Navigator at American Cancer Society. She said if I don't receive a call back from Tina Miller or Michelle Walker today, to call her and she will try to advocate for me.

Getting really frustrated with this! I have MRI on Friday, should have results on Monday, and if it hasn't shrunk I have to make a decision regarding surgery. Without this information, I really don't feel I can make a well informed decision. Why would a cancer center, KNOWING you are already going through a difficult time, make getting such a simple question answered so difficult?

MRI

MRI is scheduled for Friday. I should know if the chemo has shrunk the tumor by next week. Again, for those who haven't been reading, if the tumor has shrunk or stayed the same, I'll continue with second round of chemo called FEC. FEC is a combination of three drugs: 5Fluorouracil, Epirubicin and Cyclophosphamide, each with their own side effects. I will have the treatments once every 3 weeks. Symptoms may be more severe.

On the other hand, if the tumor hasn't shrunk, the oncologist thinks I should have surgery. Although I understand her point of view on this, I'm a little apprehensive to do this prior to the second round of chemo. If the tumor is gone, the only way to measure, the second round of chemo's effectivenes, is to wait and see if the cancer comes back.

Advocate on the Case

Called today and spoke with the Advocate at MDA. She is going to try to email a radiologist or go through Dr. Feig's office (the breast surgeon I saw when I was down there in August). Hopefully she'll be able to get the answers I seek.

Still Waiting

I called and left that message last week for the advocate at MDA. I stilled haven't received a return call. Also, although the nurse at Dr. Pusztai's office claimed that Dr. Pusztai had read my email and said the same thing, I didn't receive the return receipt on it until a day later. If I don't hear back from the advocate today, I guess I'll have to find another way to make some noise.

Cost of Care: Woman's hardship is compounded with cancer diagnosis after layoff | News for Dallas, Texas | Dallas Morning News

Cost of Care: Woman's hardship is compounded with cancer diagnosis after layoff | News for Dallas, Texas | Dallas Morning News

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No News Would Have Been Better News

Checked message responses on mymdanderson.org and no response yet from the oncologist. I talked to my oncologist when I went in for chemo today and she said I should wait until after they do the MRI to determine if the tumor has shrunk or not before I make my decision. She also said if I just can't make up my mind, I can always start with the lumpectomy and later decide to do the mastectomy, but I can't do it the other way, so ...

Scratch that.. In the middle of typing this blog entry, I received a phone call from the oncology nurse at MD Anderson. She said that Dr. Pusztai, my oncologist, had read the email I sent and that he said the same thing she did. I would have to make an appointment with him. I explained that, I was currently receiving weekly taxol treatments and that would be impossible. I also explained that I needed to make a decision before the treatments ended. I also explained that I didn't need a consult with an oncologist, I needed to talk to a radiologist, preferably one that would be involved with screening me. She told me that she could not set that up for me. I would need to talk to the screening department. She sent me back to where I started. How frustrating is that? By the time I calmed down enough to take action, it was after 5pm. I went ahead and left a message for my advocate at MD Anderson, Sonja Tucker. Now, I'm waiting for a call from her. Hopefully, I will hear from her in the next few days and she can get this cleared up.

In other news, I received my hats and scarves from www.tlcdirect.org that Christine ordered for me. They are awesome! Thank you Christine! I especially love the scarf. I never thought I'd be a scarf person, but it's so comfortable to wear around the house. I even got brave today and wore it out, in sort of a gypsy style, with big earrings.

Yesterday, I started working on adding some human hair to hats. I picked up the hair fairly cheaply at a little beauty supply in east Fort Worth. It came on a roll, and I believe it is normally what is used to do weaves. My mother gave me some assistance on figuring out the best way to approach this. We spent several hours lining a hat that was scratchy, fighting a cheap sewing machine, and whip stitching some hair into another hat(which will still need one more layer of hair to not look too thin). Thanks Mom! Below are a few pictures showing how it was done and how it looks on me.

Inside Hat

Stitching Detail

Navigating Bureaucracy at MDA

MD Anderson has to be the most frustrating health care system I've ever had to deal with. You make a phone call to try to obtain something as simple as an answer to a question, and they send you from person to person. You have to be VERY persistent, even if you go to an advocate, to get an answer. Here is a copy of an email I was told to write, after attempting to get my question answered by two different people.

Date:	09/16/2009 08:15:11 AM
To:	Dr. Pusztai Clinical
From:	TOWNSEND, AMY
Subject:	Screening
Message:	I called the screening department to talk to a radiologist there at MD Anderson, to find out if they thought that I could be effectively screened following lumpectomy. The nurse there called me back and said I could not talk directly to a radiologist. She said I had to go through your office and have someone in your office contact a radiologist and request this information for me. I called your office and spoke with Gina Garcia. She said that I should send an email with my specific question, so here is my question: I am reconsidering lumpectomy as an option for surgery after consulting with Dr. Feig and several plastic surgeons, including one at MD Anderson, and finding out that my reconstruction options after mastectomy would be severely limited. My concern is that after surgery I will not be able to be effectively screened for a local recurrence due to the density of my breasts. Since I was misdiagnosed here by our local screening facility, I would not feel confident returning to them, so I am interested in having my post surgery screenings done there at MD Anderson. In order to make an educated decision (regarding the type of surgery I have), I am seeking the opinion of a radiologist(or radiologists) there at MD Anderson as to whether they feel they could effectively screen me. I know that mammograms and ultrasounds are not a perfect science, but I am wanting to know if they feel they could, with some accuracy, screen me effectively. I had a mammogram and an ultrasound done at MD Anderson in August. If one of them could take a look at my films and offer an opinion it would greatly assist me in making my decision. It was mentioned to me that I might have to come down there. This is not an option at the moment, as I am currently doing weekly Taxol treatments. In 3 weeks they will be complete. At the end of the treatments, an MRI will be done to determine if my tumor has shrunk. If it has not shrunk, my oncologist here is recommending surgery. I need to make the decision before then so I can get the surgery scheduled. Anything you can do to assist with this would be greatly appreciated. Thanks, Amy Townsend

Dallas Morning News Article

If anyone is interested in seeing the Dallas Morning News article I am in, it will run Sunday, September 20th. It will be in the paper as well as online. When I find it online I will post the link.

Lack of Government Support on Cancer Prevention

I've been reading a book called "The Secret History of Cancer" that really goes into detail about how much our government is aware of but not sharing. In 1936 a conference was held where carcinogens like asbestos, smoking, and workplace related chemicals were discussed. Many of these were not banned for decades, and some are still in use. Some that are still in use are detailed in the linked report. It's pretty much impossible to avoid all these things. The only thing that is going to make a difference is for government to ban them and force the companies to find alternatives. Many of the items in the report are banned in the UK and other countries, but not in ours. North America has the highest breast cancer rate of all countries. Wonder why?

This report is lengthy, but worth skimming through:

http://www.bcaction.org/PDF/StateofEvidence.pdf

8 Down 4 to Go

Finished my 8th chemo treatment yesterday with a photographer from the Dallas Morning News in tow. A Dallas Morning News photographer you ask? Yes, a Dallas Morning News photographer went with us to chemo yesterday. Here's how it came about:

Back in July when I found out Jesse was going to be laid off, I called the American Cancer Society and spoke to an insurance advocate regarding our options. I wanted to know that we would be ok and would have insurance no matter what. I was concerned about what would happen if we could not afford the cobra and wanted to find out more information on the lapse in insurance and pre-existing condition clauses. Last week, she called and said that she had received a call from the Dallas Morning News requesting to talk to patients who had cancer in the DFW area and had faced difficult financial situations such as ours. She asked if I minded if she gave the reporter my contact information. I agreed to it, and the reporter called me. I spoke with him, answered some questions and he initially said a photographer would be out last Friday. Well, the photographer didn't show or call and I thought it was a dud deal. But, Monday the reporter called back and told me they were still interested in doing my story and that a photographer would be calling me. She called me Wednesday and asked if I minded if she came before chemo, followed me to chemo and videoed and photographed the entire process. I agreed to it.

She showed up Thursday around noon. We spoke for a while and she was very nice. She rode along with us in the car and asked questions while we drove. At the chemo office, they made me sign a special release. She followed me into the lab room for my labwork and then into the infusion room. Once in the infusion room, we tried sitting in the normal seating, but due to HIPAA privacy laws, they moved us to a special room. Anyhow, it helped pass the time at chemo as she asked both of us more questions and videoed.

After we got home, she talked to my daughter some and asked some more questions. She also took video of my shelf where I keep all the things my chemo angels and others have sent me. She told me the article should run in about 2 weeks and they would be in touch with me to tell me when. It will be in the paper as well as on the website, which is located here: http://www.dallasnews.com/ If you take the paper or check the website regularly and see it, and I haven't posted that I was told, please let me know.

Oh, and for those that are wondering, I decided to just go with a hat on. I didn't think I could handle dealing with that dang itchy wig during chemo, especially with a photographer there. I think I looked pretty good.. at least I hope so!

7 Down, 5 to Go!

Amy's Helpers website has been updated. They schedule a few of the chemo sessions fairly late and we may need help getting Katie from school on those days. Check here if you think you can help out: Amy's Helpers
Call me for details on where she will be after school and exact times, I didn't want to publish this for safety reasons.

I'm now on the downhill side of the Taxol. Just 5 left! I talked to the oncology nurse today regarding how they were measuring my tumor. She said that's just a way to make sure it hasn't grown. She agreed it was a fairly rough way to measure it and assured me that at the end of the twelve weeks they would have an MRI done to truly evaluate the effectiveness the Taxol had. If the tumor grew or didn't reduce at all, they may recommend I do surgery before anymore chemo is done, or they may recommend I continue. The call will have to be made after the effectiveness is evaluated. So, this changes my schedule a bit. I may need to go ahead and make a firm decision on surgery just in case.

I think I will call MD Anderson tomorrow or next day I'm feeling up to it and see if I can talk to the radiologist. I still need to find out if they think they can effectively screen me.

I also need to find out more information on the radiation machines. I called my brother who is an x-ray tech and he said that radiation was a different world, but said he'd see what he could find out. I may need to call the radiation oncologist I spoke with at MD Anderson and find out what the newer machines are called or what they do.

A little tired today after chemo, so I think I'm going to take it easy the rest of the day. One of the ladies from church is bringing us Kentucky Fried Chicken for dinner, so I won't have to cook. Yay! I'm so thankful for the women at our church!

My mom took me to her friend Cora's house yesterday, and I got my wig "halo" trimmed up. I added a magnetic strip to it and put one in a hat. It's much less itchy and hot, and so far it's holding well. Also, the hat will be less difficult to wear than if I had used velcro. The velcro tends to stick to my normal hair if I wear the hat without a hair piece in it. When I remove the hat it pulls out what little hair I have left!

Halfway Through Chemo as of Tomorrow!

Yay! After tomorrow's chemo treatment, I'll be halfway on the Taxol. Just 6 more Taxol and 4 more FEC to go. I was calculating the other day and it looks like I'll be done with chemo around the end of December. What a great way to celebrate the New Year!

After chemo, they'll have me rest for about a month, then I'll need to do surgery. So, I guess surgery will be around February. Following the surgery and recovery time, I'll begin 5-6 weeks of radiation.

Information on SGAP

Yesterday, I received a call from The Center for Microsurgical Breast Reconstruction in New Orleans. The lady I spoke with on the phone provided me with a lot of useful information. I asked her about the experience of the doctors there, and she said Dr Allen performs 3-5 surgeries a month. This sounds more like the experience I was wanting the surgeon to have. She said that Dr. Allen had pioneered the flap surgeries, inventing many that didn't previously exist. They are currently performing an additional surgery that he pioneered that is not offered anywhere else. The new procedure is called TUCK. It uses skin from your inner thigh.

I asked some questions about how long you'd have to be there if you had it done there and were from out of town. She said a typical surgery would go like this:

1st day - Consultation and PreOp
2nd day - markings for surgery and answer any questions
3rd day - surgery
4th-7th days - recovery in hospital
8th - 10th days - recovery in local hotel room
11th day - final check up, and if all is good, release to go home

She said it is the only place in the world where you can get both breasts done at once. They have two surgeons in the room and have stream lined the process so that the procedure for both breasts is only 7 hours. Most doctors do one side at a time and EACH side takes 8-10 hrs. They would not even consider doing the surgery, though, until at least 6 months after radiation.

Anyhow, it was good to get the information and it sounds a little better than the plan MD Anderson gave me. I would still need to go back for any adjustments and for nipple reconstruction, but it would eliminate one of the big major surgeries and I feel I'd get better results dealing with someone who does these regularly.

On another note, I'd like to say something about this blog. This blog is here to keep everyone up to date. This blog is not here to replace visits or phone calls. It seems as soon as I put this blog up everyone got the idea that I didn't want calls or visits anymore. This is definitely NOT the case. It really is ok to call! You do not have to apologize or feel guilty for calling. Please feel free to call anytime you'd like (well within reasonable hours... ) even if you catch me at chemo, it's ok, I'm typically bored there anyways sitting for 2-3 hours with nothing much to do! I'd love to hear from some of you occasionally in person, too!

Hair Hair Everywhere!

My hair is falling out. It is driving me crazy. There is hair everywhere! I took a shower last night and clogged the drain with my hair. I got out and dried my hair with a towel, and hair fell from my head and stuck to my wet body. It is getting so thin that I feel uncomfortable going out without a hat or a wig on now. I've been debating on when I should just shave it and be done with. I'm sure another week or two of cleaning up the hair will drive me to that point.

I wore my wig to church Sunday. I did get a lot of compliments on it. It looks better than my own hair, actually, but similar enough that I believe many were unaware. One of the older balding men told me he liked my hair and I teasingly asked him if he'd like to borrow it sometime. He asked, "Is that a wig?!?"
I guess you have to keep your sense of humor about this, otherwise it will drive you insane.

Other than the hair issue, I think I've managed to find a way to effectively manage my side effects. This week my worst day was Thursday during chemo. After that, I really haven't had much more than a little fatigue. The neuropathy did kick in a bit last night and my tongue began to feel a bit numb, but after I took a slightly higher dose of the neurontin, it quickly went away. I think the real key to dealing with this chemo is simply to find a way to eliminate or deal with the side effects. After you have this accomplished, it's really not that bad.

My chemo angels sent me some cards this week. One of them even included a few scribblings from their 2 yr old. This really gave a good laugh. Thank you angels! I still remember Katie getting a hold of a few things that the second my back was turned and adding her own little personal note.

I found out a friend was diagnosed with skin cancer. I called and talked to her mother who used to live across the street from me. Her mother told me that she was really having a hard time. There were odds that were against her survival, due to the fact it was (as usual) diagnosed late due to her age. I told her that the odds are just numbers, and even if they are accurate, you can't give up hope, because you never know which side of the numbers you are on. Even if you have a 1 in 1000 chance of living, how do you know you aren't the 1? If you give up without ever even rolling dice, you'll never know.

I told her about the great programs the American Cancer Society provides, like the 24/7 hotline: 1·800·ACS·2345 which will answer health questions, provide social resources, advocates, and just an ear to listen if you need someone to talk to. I also told her about some of their other programs like Reach to Recovery, and Look Good Feel Better. I have used these resources myself and would highly recommend them to anyone who is diagnosed with cancer of any type. For those of you not diagnosed, this is a charity I'd highly recommend giving to if you ever have the opportunity to do so. I have had nothing but good experiences with them.

Decisions

Here is the promised post on decisions:

After acquiring the information from MDA this week, I've pretty much limited my surgical options down to two options. The first option is breast conserving surgery (lumpectomy), and the second option is bilateral mastectomy with SGAP reconstruction. There are many pros and cons to both options. Both have more cons than pros. I spent some time earlier writing this out on paper to try to come up with lists of the pros and cons for each to use as a decision making tool. Below is a description of each option, followed by the pros and cons of each. If you have any opinions you'd like to share, please feel free to email, call or comment.

Breast Conserving Surgery (aka lumpectomy)
This is a simple outpatient surgery where the surgeon makes an incision near the tumor site and removes the tumor along with a small margin of cancer free cells around the edges. Once the tumor is removed, a pathologist reviews the tumor and insures the margins are clear. If the margins are not clear, an additional surgery is required to achieve this. The breast is then radiated to insure that any remaining cancer cells are eliminated. The 5 year mortality risk for this surgery and mastectomy are the same; however, the chance for recurrence is slightly higher (15% vs 5% for mastectomy). Post surgery, you would require more frequent mammograms and ultrasounds than the normal population (most likely every 6 months rather than once a year). My biggest fear with this surgery is that they will not be able to adequately screen me afterwards. I plan to call MD Anderson and talk to the radiologist who I mentioned in the proceeding post and ask how well he feels he can screen me should I choose this option.

Skin Sparing Bilateral Mastectomy with SGAP Reconstruction
Skin sparing bilateral mastectomy is a surgery where they remove the breast tissue and nipples from both breasts. They make the incision around the nipple area and sew the skin back together, leaving two scars where the nipples used to be. Before they sew the incisions, they typically place expanders (saline or air filled bags that can be expanded) in place to stretch the skin. In my case they would put these in place, and prior to radiation they would deflate them. After radiation, they would reinflate these and continue to inflate them until the skin is stretched enough for reconstruction. It would be 4-5 months after radiation before reconstruction can even be considered. A hospital stay and several weeks recovery time are required. This surgery also involves having drains put in that stay in for several weeks. These drains have to be emptied at home each day.

The SGAP reconstruction consists of taking skin and fat from the hip to create the breast mound. The expanders are removed and the fat is put into the breast to create the shape. The patch of skin they take is shaped like a football and sewn cross the center of the breast like a patch. In order to get blood to the skin patches, they have to microsurgically attach the blood vessels of the patch of skin to nearby blood vessels. This is a tedious task. One breast usually takes 8 hours to complete. Several days of hospital care are required. Recovery can take many weeks. A second surgery is usually needed for each breast to correct any problems. A third surgery is required to create a nipple. There is a risk of necrosis occurring if the skin patch does not take. Risk of infection is also an issue. This procedure appears to be a rare one and not many surgeons are very experienced. Even at MD Anderson, their best surgeon has only done 20 in their career. I was told they have more experienced surgeons in New Orleans at the Microsurgical Center. I plan to call them and get more information and see if this is true.

So here is what I have for pros and cons on each:

Lumpectomy

Pros:
Outpatient Easy Surgery
Little to no recovery time
No hospital time
No drains
Maintain feeling in breasts

Cons:
Have to go back to MD Anderson (I wouldn't feel confident having it done here)
Screening Concerns
Higher chance of recurrence(15% vs 5% for mastectomy)
Future possibility of many biopsies should they find any little thing on my screenings
Possibility of second surgery should they not get clear margins
One Scar
Possibility of slight breast asymmetry
Worry that they will miss something on a screening
Costs associated with travel

Bilateral Mastectomy with SGAP Reconstruction
Pros:
Lower risk of recurrence (5% vs 15% for lumpectomy)
No future screening necessary
Less worrying about recurrence

Cons:
Have to wait until after radiation for reconstruction
Have to use prosthesis or go flat chested during this time
Multiple scars
Multiple surgeries
Multiple recoveries
Risk of necrosis(which would lead to more scars and more surgeries and more recoveries)
Have to travel to New Orleans
Costs associated with travel and lodging
More invasive surgery
No feeling in breasts
Mastectomy requires physical therapy afterwards to achieve range of arm movement
Risk of infection on all surgeries

So now you see what I'm facing. I have two options, both with more cons than pros. The question is, do I go through hell for an additional year for the 10% lower chance of recurrence, or do I take the quick and easy way out and just hope they can screen me effectively and find anything should it come back? What do you think you'd do and why?

Susan G Komen Race for the Cure

I think I'm going to participate in this one. Dana, the other girl scout troop leader sent it out to us and thought it would be fun for us and the girls. If anyone else wants to join in the more the merrier!

http://www.komen-dallas.org/site/PageServer?pagename=race_info

Cancer Sucks

We made our long journey back from Houston today. Although we enjoy going down and visiting with Jesse's sister and her family, it was nice to be home. While I was down there I received a lot of information. Much of the information was information I needed to hear, yet really didn't want to hear. However, I think in the end it will help me to make more informed decisions. Below is a synopsis of what all was done while I was there,and what information which was obtained.

Monday:

Mammogram and Ultrasound

I found out that MD Anderson's mammograms are much less painful than those I've had here at Diagnostic Health. At Diagnostic Health the mammograms I had were an 8 on a pain scale of 1-10. They would contort me and put so much pressure on my breasts that I was literally crying out in pain begging them to hurry. At MD Anderson the mammogram was a 5 on the same scale. At no point was so I so miserable that I couldn't handle it. I was very relieved about this.

While I was having the ultrasound, a radiologist who reads the ultrasounds came in to inspect the images the technician had obtained. We chatted a bit and I told him that I was on chemo and they had said my tumor had shrunk considerably after only 4 treatments. I asked him if he would compare the measurements of the ultrasound with a previous one I'd had at Diagnostic Health in May. He measured the tumor on the screen and went and looked to see what it had been previously and found that there was no difference in size. I questioned this because I could actually feel a physical difference myself. He explained that often there was inflammed soft tissue surrounding a tumor that may have gone away. He said that the method my oncologist was using to gauge the effectiveness of the chemo (measuring it physically using a ruler type gauge) was outdated, archaic, and inaccurate. I was a bit angry with my oncologist at this point for giving me false hope. Although I want to hear hopeful things, I'd much rather hear the truth, so that I'm not dissapointed later. Before we left MD Anderson, I obtained a copy of the Ultrasound and the report and I plan to address this with my oncologist.

It's frustrating to have to go back and educate the doctor who is supposed to be in charge of my care. If I hadn't gone down to MD Anderson and consulted with an oncologist there, I might at this point be very worried about my chemo regimine. However, the oncologist here is following the same chemo regimine I would have received at MD Anderson (with the except of Epirubicin rather than Adriamycin which the oncologist at MD Anderson told me was often substituted and had similar results and effectiveness). So for now, I will educate her on measuring the effectiveness more accurately, and continue my chemo here.

Tuesday:

Breast Surgeon Consult
Radiation Oncologist Consult
Breast Reconstruction Consult

Tuesday morning we met with Dr. Feig for a breast surgery consultation. After examination, his first suggestion was breast conservation surgery (lumpectomy). I told him my concerns about lack of screening post surgery, and he seemed to accept that. At this point I was still pretty much decided on bilateral skin sparing mastectomy. The next thing he brought to my attention was definitely something I had not been told before. He said that it appeared that the skin above my tumor (which is very close to the skin surface) appeared to be affected by the cancer. He recommended removal of the skin there. This would create an additional scar, as well as leaving less skin for a reconstruction surgeon to work with. It was fairly dissapointing to hear that I was looking at yet another nasty scar.

The next consultation was with Radiation Oncologist Julia Oh. I had not seen a Radiation Oncologist before, and hoped to find out what my odds of having to have radiation post surgery were. There were many reasons I wanted to know this prior to surgery, but the main one was that radiation effects the outcome of reconstruction. I did not want to have a surgery with immediate reconstruction just to have it messed up by the radiation a few weeks later.

What I had been told by the breast surgeon here who diagnosed me, was the rule of thumb on radiation was if you have a lumpectomy, you receive radiation no matter what. And, that if you have a mastectomy and 4 or more nodes came back positive after surgery, you might also receive radiation. That information was incomplete. The truth is, there are multiple situations where radiation can offer a significant increase in survival rates such as large tumors > 5 cm, 4 or more positive nodes, and the what they called the grey area. The grey area is of course me. You have to have a combination of factors to meet the criteria for the grey area. Some of the factors are: diagnosed at young age (me), 1-3 positive nodes (I have at least 1, possibly 3-4), and lymphatic vessel involvement (me). She said that radiation would probably increase my chance of survival as much as 20%. I questioned this, considering I thought that my current chance of survival with surgery and chemo was already 84%, and she told me that actually my young age and axillary node involvement actually put me about 60% with surgery and chemo. The radiation would give me back that 20% I thought I already had, bringing my chance of survival back up the 80% that I was more comfortable with. This is when I decided I was going to take her advise, and have radiation no matter how many nodes they found.

At this point I was feeling a little frustrated, but the next consult was going to be the final one and I was doing my best to absorb all this new (and frustrating) information. We made our way to the reconstruction consult. We saw Dr. Selber rather than the reconstruction surgeon we were initially scheduled with, because the breast surgeon had realized they had scheduled me with a surgeon who did not perform the particular type of reconstruction I had interest in. He was really young, younger than me in fact, but seemed to be as knowledgable as the older more experienced, Dr. Duffy here in Dallas. After examination, the first dissapointing thing he told me was that I would not get good cosmetic results if I did my reconstruction at the same time as surgery. This was dissapointing, because I was hoping to get it all done as one surgery and not have to go through multiple recoveries. He said that the radiation would shrink the breast, that would already have less skin than norma,l and that he would recommend I have an expander put in at the time of surgery, have it deflated during radiation and reinflated shortly afterwards to stretch the skin and hold the shape until my body had recovered enough from the radiation to handle the reconstruction surgery.

The next thing he did was tell me I only have two options for reconstruction (due to the fact I do not have enough belly fat for any of the options that pull fat, muscle or skin from the stomach area, I will have less skin left from my skin sparing mastectomy (due to the additional skin needed above the tumor), and the fact I have to have radiation). The two options are SGAP, where they take skin and fat from your upper buttocks/hip area, and lattisimus dorsi flap, where they take skin from your back and insert an implant(not a good option, it leaves a 6 inch scar down the side of your back for each breast).

I was ok with this. After all, the SGAP was the one I came to discuss right? This is where it really went downhill. I found out that I am again in the minority. Typically, breast cancer patients either have belly fat or don't need radiation. Due to this fact, not many SGAP's are performed and most reconstruction surgeons have only done a few in their career. On top of this, the surgery is very long (8 hrs) and very difficult. Each breast would have to be done separately, in an 8 hour long span. After each surgery there would be weeks of recovery time, followed by additional operations to correct any issues. Another surgery would need to follow in the future to create a nipple. If both breasts were done we were looking, at the very minimum, of an additional 6 surgeries that would be required after radiation. This would add an additional year of misery to my cancer treatment. In addition to that I would have to go a large period of time without breasts. This would mean I'd have to deal with prosthesis etc.

At this point I asked him the dreadful question, "So how many SGAP's have you done?"
He humbly replied, "Five. The surgeon with the most experience in SGAP here at MD Anderson has done around twenty. If you want someone with more experience, you will most likely need to go to Louisianna."

At this point I lost it. I'd been doing so good all day, and I was counting on MD Anderson having surgeons skilled in all the possible options. In those two days, I had found out my tumor had not shrunk, my oncologist here was clueless, I had to have an additional scar to remove the skin over the tumor, I had to have radiation, my survival rate was lower than I thought, my reconstruction options were extremely limited, and even the doctors at MD Anderson didn't have much experience with SGAP. This was just too much for one day. It's too much for one lifetime...

Anyhow, now I'm faced with some difficult decisions to make regarding my surgery and reconstruction. Since I know first hand, that all this information is probably creating information overload for you, I will save you the decision debate tonight and write about it tomorrow or one of the days this week. I'm sure I'll be kicking it around enough the next 5 months to remember. Oh, did I mention Cancer Sucks??!?!!

Today at MDA

Well today at MDA went smoothly. The mammogram wasn't as bad as the ones they do at diagnostic health. So I lived through it without too much pain. We went after a geocache when we got done, it was a multi though and it ended up being a wild goose chase. We spent about 2 hrs on it and finally gave up. After that, we really didnt' have enough time to get to the museum district, so we hit some of the gift shops and ate lunch. We came back and I had the ultra sound.

There was some good and bad news with the ultrasound. They did a more thorough one than they had done before on me. The good news is, there does not appear to be any nodes in my upper clavical area (right below my collar bone) that are affected. The bad news is, he measured my tumor on ultra sound and compared it to the ones I had done at diagnostic health in May and it hasn't actually shrunk. The tumor itself is still the same size, even though physically it feels smaller. The reason for this is that when a tumor forms it irritates the tissue around it, causing the tissue to become inflammed. The chemo has caused the soft tissue around it to return to normal, but it hasn't touched the tumor yet. This is ok though, considering I've only had 4 rounds of chemo. If it had shrunk as much as we had thought it would have been extraordinary. I think I'm going to bring back the reports and x-rays with me and talk to the oncologist I'm seeing and see if she agrees. Also, I think I'm going to ask her to measure it using this method in the future so we can actually tell for sure if it has or hasn't shrunk.

Hair Cut and Houston Tomorrow

I decided to go ahead and cut my hair off short since it was beginning to fall out. Every time I brushed my hair, washed my hair or even touched my hair, I was finding strands of hair. It was beginning to really bother me and making a big mess. It was almost like having another pet with 6 inch hair! Having my hair cut, also, gives me the ability to take control by choosing to cut it rather than just waiting on the chemo to take it. Anyways, here's a picture of it:
Tomorrow morning, Katie leaves for church camp and we leave for Houston. We'll be returning on Wednesday, and Katie will be back Thursday afternoon. We won't be needing anyone to watch her for chemo this week. I think next week is covered, but the one after that is still open if anyone is available to cover it. Please check the Amy's Helpers page for more details.

Major Shrinkage

I called the oncologist's office and got the size measurements of the tumor:

on 7/7/09 it was - 3cm x 2cm
on 8/6/09 it was - 2cm x 1.5cm

So the Taxol is working well!

4 Down 8 To Go

Finished my 4th of 8 Taxol treatments successfully today. I met a really nice lady,named Cynthia, who has been down this road 3-4 times. This time, unfortunately, the breast cancer has spread to her bones. Even though her prognosis is bleak, she still has incredible hope. It really amazes when I meet someone who is so hopeful. She knows she's alright because she's in God's hands. Amazing faith and hope...

I saw the oncologist today, and she said the tumor has definitely shrunk. I forgot to ask how much, but I plan to call her back in a bit and find out. Other than that, she said everything appeared to be going well and she scheduled me more Taxol appointments, which will be added to the calendar in the next hour or so.

Houston Trip Planning

I was looking at our schedule for Houston and on Monday we have a large amount of time between appointments. We have one free valet parking pass left that we didn't use the first time we went down there. Since we have to be there all day (and parking is expensive!), we thought we would use it Monday. That left us with several hours to kill in the middle, so I started looking around for things to do. I found out that the light rail system runs near there and goes to the museum district, downtown, and a few other areas. So, I started looking to see what museums were there, and we found some that looked quite interesting. Our plan is to valet park, do the mammogram, do a couple of nearby geocaches (couldn't resist because they are RIGHT there), hop on the light rail and ride it to the museum district, tour a couple of museums, eat lunch, and then return for the ultrasound at 1:40. I think the break in the middle will make things a little more fun for us.

MD Anderson Finally Cooperating

Jesse managed to get a hold of someone at MD Anderson today and we should have the reconstruction appointment on my schedule by the middle of the week. Talk about last minute... We are leaving Sunday morning. We have appointments starting at 7:40am on Monday morning. They are making me do another mammogram, even though it is useless. Why do they like to torture me? I guess I'll endure one more if I have to...

Thursday, when I go for my chemo appointment, I will be seeing the oncologist. I'm hoping she'll measure my tumor and let me know if it's shrinking. It feels like it has shrunk quite a bit! I'm hoping the chemo will clear my lymph nodes, so I won't have to have them removed. I've heard lymph node removal makes the surgery much worse. There is also the life time risk of lymphodema, which can cause your arm to swell up and stay swollen for months.

Today, I am feeling pretty good for a change. I managed to get some laundry done and straighten up around here. I'm really amazed how much easier things are with this Neurontin to eliminate all the neurological pain!

Wednesday is Jesse's last day at work. If ANYONE has any ideas or leads for him, please send him an email (or me) or give us a call. We will be ok for a few months possibly, but he really needs to find something soon. In case you aren't aware, his background is most Network Administration and Support.

Fatigue and Fainting

Yesterday, I stayed home with Katie while Jesse went to a concealed handgun license class at the church. I was considering going myself, but just didn't feel I could handle an entire day worth of it. I'm really glad I didn't end up going, as the class ended up lasting about 12 hours! By the time Jesse got home I was exhausted. I normally have no problem keeping up with Katie by myself for a day, but yesterday I really started going downhill around 5 pm. It seemed the more tired I got, the more wound up she became. The breaking point came when she wanted an ice cream from the ice cream truck, and I just didn't have the energy to get up and walk her across the street. She didn't understand and started crying.

After Jesse got home, we ate something, and she went to bed. We went outside on the front porch for a little bit to wind down and talk. When I got up to go in, I suddenly felt really dizzy and not right. I knew that I was about to fall, and I said enough to alert Jesse before passing out into his arms. I'm still not sure if it was due to the exhaustion, or was just one of the side effects of the many drugs I'm taking. The Taxol does have fainting and dizziness as a side effect. The Neurontin also has dizziness. I guess I'm going to have to be careful with that and make sure I don't stand up too quickly, especially after a long exhausting day!

Neurontin is a Wonder Drug!

This neurontin is really helping to ease the side effects. Last Saturday, I was in a lot of pain, but today I'm in no pain. I only have a dull ache in my stomach and feel a little ran down. I can definitely handle this!

Another Chemo Complete!

Another chemo treatment was completed successfully today. I also snuck some pictures of the morbid place as well for your enjoyment. You can find them at the bottom of the blog.

We decided to bring a deck of cards today and play "Skip Bo" to kill the time. This seemed to help. My white blood cells and other stats are still looking pretty good. I was only .1 below the normal range! I talked to the chemo nurse about the Gabapentin and she said that it was fine to take with the Taxol. In fact, a lot of people end up using it. For the last couple of days I've been using it and it's been working great.

I also remembered that I forgot to thank a few people who have also helped in major ways. My mother-in-law Shirley came down and stayed with Katie and made sure she made it to all her activities while we were down in Houston. And, when we go to Houston in August, my mother is going to come and feed the dogs and cats for us. We appreciate you two as well.

Up Late and Grateful

Up late due to the pre-chemo steroids again. I took them earlier this time (around 3:30 or 4:00pm) and I'm still wired at 12:40am. I even took one of the drugs they suggested to counter the steroid... took a hot bath.. no luck. Anyhow, I thought I'd take a little time to write about some of the awesome things people have done for me during this that have just brought me tears. The support I have received so far is above and beyond anything I have ever experienced. I've always been a fairly independent person (at least after I was about 14 or 15), and rarely needed or asked for much help unless something crazy came up, and that usually only something quick and easy for the person helping. So receiving all these offers for help and support is really new ground for me.

The first group of people who offered to help were the ones that have been assisting with childcare when I have to go to all of these many tests, appointments and weekly chemotherapy sessions. Many people stepped up to offer this, but one of them went way out of her way to make sure that every weekly chemo treatment was covered for me. They do not allow children in the chemo room (for safety reasons) , so if she hadn't volunteered to do this, Jesse would not have been able to go with me to chemo each week. I really dont think I could have handled sitting there in that morgue for 2-3 hours by myself! I think I would have turned into one of the lonely hopeless half dead people myself! Anyhow, that person is my step mom, Christine. She has gone above and beyond to assist with childcare. I appreciate her, the women from church, our neighbor Misty,and Maegan for their assistance as well.

Secondly, the people who have sent me gifts, cards, and flowers to cheer me up. First of all, Jesse who allowed me to get the palm tree I saw on the side of the freeway at a nursery as we were leaving Houston. I was down in the dumps because I hadn't received what I felt we went for at MD Anderson and needed a pick me up. He willingly complied and has been helping me take care of the tree. Maegan has also been around and has been helping out around the house, watching Katie and brought me flowers the other day. I appreciate all these things more than you know!

Next, my mom's friend Cora. I haven't seen Cora since I was a child. My mom recently reconnected with her, and upon hearing about my breast cancer, she sent me the most thoughtful box full of comfort items. It contained a pink robe, some little white booties, a tea light candle and a picture frame with a motivational poem. It arrived right after I received my chemo treatment and it literally moved me to tears.

I'd also like to thank the two chemo angel volunteers from http://www.chemoangels.net/Main%20Content/how_it_works.htm who send me cards and poems every week. I am really enjoying their supportive words.

This week I received another offer for help. The women from my church are offering to bring fresh cook meals on my chemo days and the two bad days following them. How awesome is that? I think everyone in the house was getting tired of fast food and frozen dinners 3-4 days a week. I know I was! Now on my worst days, everyone gets to eat well, and its one less thing for us to worry about. A big thanks to Zaneta (who is coordinating this) and the other women who she is working with for being so thoughtful and offering this. After bringing home the first meal tonight, I think we are really going to enjoy this! That food smelled,and tasted.. (we had to try it! It smelled to good to not try it!) delicious!

Above all this, I appreciate all the prayers people have sent up for me. After only two taxol treatments I can literally feel that the tumor has shrunk. I'll know for sure next week I believe when I have to see the doctor when I go in for chemo. I seriously doubt the chemo works that fast on it's own (or I wouldn't need 12 weeks of it!). Keep praying for the tumor to shrink and the lymph nodes to be clear. Pray for the doctors to have wisdom and make the right choices that will best treat me.... and most of all Pray that I don't drive Jesse and Katie insane while they deal with me daily through my good days and bad(seriously, I'm not so much fun when I'm miserable!).

Taxol - Neuropathy

For the last few days I've been experiencing a new and annoying symptom called Sensory Peripheral Neuropathy. Taxol causes this side effect by damaging the nerve endings.

The most common symptoms of sensory neuropathy are:

• Tingling and numbness: These symptoms are similar to diabetic neuropathy but it tends to affect the palmar/plantar aspect of fingers and toes more. With oxalipaltin (Eloxatin®) it may also affect the area around the lips.
• Difficulty manipulating small objects like buttons, keys, needlework, etc.
• Worsening of handwriting.
• Paradoxical burning pain on touching cold objects.
• Propensity to fall, particularly when bending down or trying to pick up objects from the floor.

I am experiencing the first symptom of tingling and numbness. My calves, feet, forearms, fingers and tongue were all numb most of yesterday. They weren't so numb as to cause me to not be able to function, but enough to be annoying. I called the oncologists office and left a message with the nurse regarding this issue, and she called back and didn't offer me any options for relief. She told me to let her know if it got worse or didn't go away before my next treatment, but left me to suffer. So I called up a neurologist that I'd used before for other issues, explained that it was taxol induced sensory peripheral neuropathy and asked if there was anything he could do to help that wouldn't interfere with the effects of the chemo. He called me in a prescription for Gabapentin. He has me taking 100 mg 3 x a day for 5 days to see if it helps. I can try two 3x a day if it doesn't, and even go up to three 3 x a day if necessary. I took one last night, one this morning and one this afternoon. So far it seems to be helping quite a bit. It does make me a little spacey, but seems to have no other serious side effects.

Of course I did the research on the drug and you can see that it has been through multiple trials if you do a google search on the keywords: gabapentin chemo neuropathy

I'm hoping it might also help with the achiness. I believe the achiness is caused by nerve damage as well. I have chemo tomorrow, so I guess I'll find out how well it works when I hit my two really bad days (friday and saturday).

Saturdays Suck!

Seems that Saturdays are my worst days with this treatment. I spent the entire day on the couch with a headache, neck pain, back pain and stomach cramps. Luckily, Katie was still at her sleepover and I was able to just lay around.

Echo Cardiogram and MD Anderson Resolutions

This morning I slept through my alarm. I was up too late last night with post-chemo insomnia due to the steroids I guess. Luckily, Jesse managed to make sure I got up in time to get ready for my echo-cardiogram. I woke up feeling ok, but went ahead and took my l-glutamine and mobic as a preventative for the taxol achiness. I started to get ready for my appointment and the phone rang. It was the oncologist from MD Anderson that we had spoke with while we were down there.

While I had him on the phone I took the opportunity to ask him why he had recommended taxol over abraxane...( my oncologist here and him both had recommended it). His response was that abraxane hadn't been thoroughly tested enough for him to be sure that it was as effective as taxol. It was a viable alternative and did look promising, but until further research had been done he wasn't recommending it to his patients. Sounded reasonable.

Next, I asked him why the ki-67 results had turned out so differently (30% vs 50%) from the two different labs. He told me that the 50% was actually not the tumor biopsy material, but rather the axillary node biopsy material. So, since the ki-67 is an indicator of growth rate, it appears that the axillary node cancer is growing faster than the tumor cancer. Since the axillary nodes are the gateway to the rest of the body, this does not sound too good. Luckily, Taxol is MORE effective on faster growing cancer cells... so maybe the taxol will clear my nodes!

I asked him about the x-rays that hadn't yet been read by their radiologists. He told me he'd send the CAT and the PET scans over to the radiologists for reading. I asked him about the reconstruction surgeon appointment I still needed. He said typically the breast surgeon likes to see you first, then make you an appointment when they determine you are a candidate for reconstruction. I explained to him that the only reason I was even wanting to have the surgery done there was that they offered more reconstruction options and experience that I could find here, and so the reconstruction appointment was more important to me than the breast surgeon appointment, but he said he couldn't do anything about that, but would have someone follow up.

I went back to getting ready for my appointment, and the phone rang again. This was another person from MD Anderson calling to ask me what all I still needed resolved. I told her what the oncologist was taking care of and asked her about the breast reconstruction and mammogram issues. (oh the mammogram issue is, that I dont want to have another mammogram done unless absolutely necessary. Due to the density of my breasts, they offer no diagnostic benefit and are extremely painful due to the soreness of my tumor and especially now that I have that chemo port!). She gave me the number of the nurse at the breast surgeons office they have me scheduled with and told me to talk to her. I tried to call her after I got back from my appointment, but she's out this afternoon. I'll have to call back monday.

So I get ready just in time to run out the door to the appointment, despite the phone calls. I get there and I had been told to go up to suite 300... which turns out to be incorrect, so I go back down to suite 108 and I'm about 10 min late. Oh well. I didn't have to wait long in the waiting room for them to get me in. While I'm waiting the stomach pains kick in. I'm balled up in a chair with my knees up to my chest trying to squish the stomach pains when the echo cardiogram tech calls me back. The test took about an hour. It was just laying on a table with some contacts taped to me and a sonogram like devise rolling around to view my heart from different angles. She recorded video of my heart beating, and sound wave type graphs of the rhythm etc.

Once that was over, I headed home. By this point my stomach pains are terrible. I was glad to get home and get the heating pad on it. The heating pad helped some, but didn't eleviate all the pain. Finally, I decided that I was going to have to give in and take something. Around 1:30 I took a Phenegran to prevent the nausea I usually experience when I take narcotic pain meds. I also ate one of those yogurts with the active cultures to protect my stomach. This actually reduced the pain a little on it's own, but I went ahead and took half of a Hydrocodone around 2:00pm.... Feeling well enough to update this blog now.. although a bit groggy... so excuse any rambling, typos or mistakes, as I'm a bit drugged up!

2 Down 10 to Go

Had my 2nd Taxol treatment today. Everything went fine. Only side effect has been that my vision is kind of blurry. The best way I can describe it is the effect they use in movies and tv shows to show someone is dreaming. Blurry... foggy like?

Today the place was like a morgue. Why do chemo treatment centers have to be so dreary? I'll try to take a picture of the room next time I'm there so you can see what I mean. It's a real plain, boring room, with a bunch of cheesy vinyl recliners, two crappy tv's that are crammed into a corner with sleeping old people in front of them(why do they take the 2-3 tv seats if they aren't going to turn the tv on?). No one talks or does anything. Really depressing to have to sit there for 2-3 hours. Jesse and I were discussing bringing a deck of cards or something next week to pass the time.

Oh I've been doing some research on the chemo I'm on. Found a great article that references pubmed.gov research articles. Apparently, there is a newer form of Taxol that is in a better suspension than this one that has less side effects. The older Taxol which they have me on is suspended in castor oil of all things... so no wonder I'm all achy with castor oil being sent straight into my veins. There's a reason they stopped using that nasty stuff back in the 40's and 50's! I think I may call over to the oncologist's office tomorrow and ask why they chose Taxol over Abraxane. I'm guessing it was cost difference, but we've met our max out of pocket for the year, so if that is the only reason, I may ask to switch to that on next treatment to reduce side effects.

Read this and see what you think.. btw my ki-67 is either 30% (according to ProPath Services) or 50% (according to MD Anderson who reviewed the same slides).

An Alternative to Taxol

If Taxol gets down to the point where it’s maybe a 1% survival difference, or maybe half a percent, or maybe none, but you just don’t want to give up that sliver of a chance, how about an alternative that might be just as good, without the toxicity?

The alternative treatment hasn’t been studied as thoroughly as it should be, but there is quite a bit of evidence accumulated about it anyway. Let me quote (with modifications) from a meta-analysis (Chlebowski 2002) :

"Lack of this treatment as a negative influence on prognosis of breast cancer patients has been reported in the vast majority of studies over the past 25 years, with many analyses controlled for recognized prognostic variables. Currently, 34 studies have related this treatment to recurrence risk or survival in early-stage resected breast cancers. A statistically significant association between this treatment and recurrence or survival was seen in 26 reports incorporating 29,460 women (Table 2), whereas eight reports incorporating 3,727 women did not see such associations (Table 3). The positive effects of this treatment on breast cancer recurrence and survival are seen in both pre- and postmenopausal women. …

In a meta-analysis, the hazard ratio (HR) for effect of lack of this treatment on recurrence at 5 years was 1.78 (95% confidence interval [CI], 1.50 to 2.11) and for death at 10 years it was 1.36 (95% CI, 1.19 to 1.55). By another measure, recurrence risk at 5 years without this treatment was 1.91 (95% CI, 1.52 to 2.40) and for death at 10 years it was 1.6 (95% CI, 1.38 to 1.76), suggesting that women without this treatment were significantly more likely to develop recurrence and less likely to survive. Most recently, this treatment was again strongly associated (P _ .005) with disease-free survival and overall survival in a cohort of 535 women (median age, 50 years) with newly diagnosed breast cancer. … These associations of this treatment and positive breast cancer outcome are substantial, with differences comparable in magnitude to those associated with adjuvant hormonal and chemotherapy use and of potentially great clinical importance." [emphasis added]

Neglecting to get this treatment after diagnosis has been frequently reported for breast cancer patients, especially among women receiving systemic adjuvant chemotherapy. In a prospective cohort of 535 newly diagnosed breast cancer patients, use of adjuvant chemotherapy and onset of menopause were the strongest predictors of lack of this treatment. …

So what is this magic treatment that makes more difference than Taxol? I call it the “Tahoe Treatment.” You’ve probably guessed its other names: weight loss, weight control, waist-to-hip ratio...

Though as the authors point out, someone really needs to do a good randomized trial, the accumulated data strongly suggest that two months of bounding through the snow with your dog, and getting trim like you always do when you go to Tahoe, will do just as much good as Taxol—or more. And it’s sure to be a lot more pleasant! Plus, there’s no risk of permanent joint pain, unless you do something really stupid on your skis. (Though to be consistent, we should be clear that that the difference made by carrying or not carrying your 10 extra pounds, and the benefit to be gained from two months of exercise, is certainly smaller than the difference made for a person who carries or doesn’t carry 50-100 extra pounds for a lifetime. However, the benefits seen in these studies are so big that they could be reduced a lot and still be in the realm of any benefit expected from Taxol.)

Here is a summary from an analysis of post breast-cancer exercise to echo what the analysis of weight says: “ Most of the breast cancer survivors were not meeting the physical activity recommendations proposed for the general adult population. Efforts to encourage and facilitate physical activity among these women would be an important tool to decrease obesity, prevent postdiagnosis weight gain, and improve breast cancer prognosis.” (Irwin ML 2004) There’s also an exercise meta-analysis (Thune 2001, pmid 11427781) which says “An observed inverse association with a dose-response relationship between physical activity and breast cancer was also identified in the majority of the 41 studies including 108,031 breast cancer cases.” I also saw something about a steroid administered with chemo possibly being partially responsible for weight gain, but I haven’t pursued it.

If it were me looking at that data, I’d put my money on two months of intensive Tahoe Therapy.

Taxol update 4/2005: In January the FDA approved Abraxane (ABI-007), a new form of paclitaxel using nanotechnology to improve the delivery. Although I am not usually in favor of the latest whizbang variant which just happens to cost more and still be under patent protection, Abraxane seems to be a big improvement.

So far Abraxane is only approved for metastatic breast cancer, but at this point, I wouldn’t accept paclitaxel in any other form—if I couldn’t find a doctor who would give Abraxane off-label, I wouldn’t do taxane treatment. Why? Because Taxol uses the solvent polyoxyethylated castor oil (Cremophor) to get the paclitaxel in, a solvent which likely contributes to the hypersensitivity reactions that often occur with Taxol and are severe in about 3% of patients. Not only are solvents also likely culprits in peripheral neuropathy, but they may actually reduce the effectiveness of the paclitaxel (leading to the rather dismal results we’ve been reading about above). By contrast, Abraxane skips the solvents and uses nanoparticle technology to deliver the paclitaxel. In a study of 460 women, the women given Abraxane had less of a hit to their white blood cells and fewer cases of prolonged neuropathy than with Taxol. Oncologists can deliver a 50% higher dose of the active agent (paclitaxel) and still get fewer side effects (maybe that way one will actually get survival differences greater than 3%!). They also don’t have to give women steroids to prevent hypersensitivity reactions.

K. Garber’s January 2004 editorial in the Journal of the National Cancer Institute provides a helpful overview of the issues (pmid 14734692). Despite the expense, my position at this point would be “either Abraxane taxane or no taxane.”

Look Good Feel Better

Went to the "Look Good Feel Better" program tonight sponsored by the American Cancer Society http://www.lookgoodfeelbetter.org

Initially, was a little awkward, being that I was the only one there by myself(because my mom was busy with work and other obligations), but I soon found myself enjoying the little tips and tricks the volunteer cosmetologist was offering.

Most of the women there were 50+ and had their daughters there as support, but all were very friendly and helpful, especially those who has been with out hair for quite a while. Each of us received a large make up bag full of high end name brand cosmetics (chanel, clinique, mary kay, avon, etc) The volunteers from the American Cancer Society made sure to come by regularly to critique my drawn on eyebrows, as well as hat and wig experiments and serve as my support person. What wonderful people they are to volunteer to do these things for us!

At the end they let everyone pick from a large collection of donated hats, scarves, wigs and other head coverings. I picked a terry cloth turban to sleep in. I look like Aunt Jemima wearing it, but I had to come up with something for night time. I also picked up a clip on pony tail to wear on the back of my ball caps. It's curly but looks really cute.

Another cancer patient who was quite a bit ahead of me, offered me some tips on how to fix the hat hair I'd bought that had lost it's curl in shipping. She told me to spray it down with some water and roll it in sponge rollers and let it dry. I have it rolled up now, and I am really hoping it works!

Drugs, drugs and more Drugs

Seems like for every side effect there is another drug thrown at me. In the last few weeks I've increased my medicine cabinet to include:

Dexamethason - steroid I have to take night before and day of chemo treatment

Lidocaine and prilocaine cream - put on port 30-60 min prior to treatment to reduce pain when needle is put in

Promethazine (aka Phenergan), Zofran - Nausea

Lorazepam - nausea, anxiety

l-glutamine - amino acid supplement you dissolve in water.. supposed to help with the joint/muscle pains

senekot - constipation

ibuprofen 800 mg - been swiping these from Jesse 2-3 x a day rather than taking 4 regular ones each time

and they just called in:

Mobic - another NSAID like ibuprofen, but supposedly more effective for the taxol pains

Hydrocodone - pain meds for when the pains get too bad and the mobic/l-glutamine isn't working

I think they just want you to dope yourself up and sleep your way through this whole thing or something... LOL Does sound slightly appealing, but I hate being so tired and out of it. Hoping the Mobic or the l-glutamine will reduce the pain more without having to result to the heavy stuff.

Today I took a combination of L-glutamine, senekot, ibuprofen 800 and lorazepam and sat on the couch most of the day with a heating pad on my stomach. Been sitting here since around 7am in pain, and I think I finally found a good combination that makes me functional again.

New Amy's Helpers Site

With everything that is going on, I had to come up with a better solution to keep track of who was doing what and what needed to still be covered, so I set up the Amy's Helpers website. This is an interactive calendar that allows people to sign up for days I need help (mostly people to watch katie while I go to dr's appointments, chemo etc.). Most of the people who have been helping should have received an email invite, but if you didn't and want to be on there, feel free to sign up. The website is http://y-me.lotsahelpinghands.com/c/616085/

Taxol Side Effects

Started feeling the side effects today. Have this really bad achy pain in my neck, shoulders and back. Took some 800 mg Ibuprofen and it seems to have helped some. Also feeling a little tired and weak....but other than that hasn't been too bad yet.

First Chemo Went Well

First of 12 chemo treatments today with Taxol. The needle wasn't near as intimidating as it was online. The lidocaine local anesthetic worked great, too. I never felt a thing. It hooked right in and even with me getting up twice to use the restroom and all the bag changes, it never had to be reconnected.

Although the process is a bit time cosuming, they give you comfortable recliners, blankets, pillows and free food and drinks. They gave me additional meds along with my taxol to prevent nausea, allergic reactions and acid reflux.

On another note, when I got home I received the most thoughtful gift. A friend my mom just recently came back into contact with, who I haven't seen since I was a very l ittle girl, sent me a beautifully wrapped purple gift. It was waiting outside when I came back after chemo and moved me so much it drove me to tears. She had included a lot of comfort items such as a soft pink terry bathrobe, soft white slippers, and another wig that I really like! There was also a candle and two frames. One of them included a really good poem. Thank you so much Cora! You made my day!