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!