Thursday, January 29, 2009

I've Started My New Chemo Regimen

Hi, everyone. I am sorry I am slow in getting an update written. I started my new chemo regimen on Tuesday and so far it seems to be much easier than the previous one. I had my chemo on Tuesday and was able to go up to school for the morning flag ceremony the next day! One of my previous students, Desiree, who made me the beautiful blanket and pillow, was being recognized as the Character Counts Student of the Month. I got to say a few words about her and give her a big hug. I also got to thank one of the teachers, Shannon Guarneri, for donating her hair to Locks of Love in my honor. We have televisions in each of the classrooms and each morning the Tiger Town News program is done. Shannon had her hair cut right on the morning news program in front of the whole school! The people at my school have really rallied around me. Their love and support have been amazing. After the flag ceremony, the teacher who replaced me invited me to come and visit my old class. I got to spend about a half an hour with them, talking and having them show me the projects they were working on. I know the chemotherapy is vital in fighting the cancer, but getting to do these kinds of things is definitely the best medicine for my spirit!

I will write about my treatment below for those of you who may be interested.

We didn't have to be at the Cancer Center on Tuesday until 11:30, so it was a much more relaxed morning than when we went up last week. First stop was the lab. They have to check my blood counts each time before I get my chemo. If they drop too low, they have to put off giving me the chemo until they come up again.

It was the first time they used my new port and I can see that it is going to be very beneficial to have it. It is under the skin, so I do have to be stuck with a needle, but there is no hunting around for a vein and once they accessed it in the lab, they left it hooked up so I didn't need to be stuck again when I went upstairs for my chemo. They use a 90 degree needle and then put a gauze over and under it and tape it down. The needle felt a bit like a bee sting going in, but they gave me numbing medicine to put on an hour ahead of time for my next visit. The nurse said eventually the skin itself will develop its own numbness from being stuck in the same place over and over.

Next, it was upstairs to the chemo unit. They gave me tylenol and benadryl to prevent a reaction to the Avastin. Then, I had to wait thirty minutes for them to take effect. First they gave me the Abraxane. It only takes thirty minutes to give. The Avastin is the one they were concerned about causing an allergic reaction, so they gave it over ninety minutes. Each time I go, they will reduce the time by thirty minutes until it, too, is given over a half hour. I only get the Avastin every other week, so when I go again this coming Tuesday, it should go pretty quickly.

The concern I have now is how my blood counts will do with the new chemo drugs. The nurse told me the Abraxane can be pretty hard on them, but a lady in my exercise class has been on Abraxane for a while now and says she hasn't had any problem with her counts. I really don't want to miss any of my treatments! If my counts do drop, there is a medication called Neupogen they can give me that stimulates the body to produce more.

The radiologist called and gave us the results of the biopsies he did last week. Again, the pathology just showed fibrocystic tissue and no cancer cells. I asked him if this was a typical report when there was cancer and it has been killed off by the chemo. He really didn't know. He said it is very unusual for a biopsy to be done once chemotherapy has already started. He said his experience is that they typically measure the effectiveness of the chemotherapy with radiological procedures; ultrasounds and/or MRI's. I'm not really sure why the doctors ordered new biopsies. I think they were thinking I was not responding to the initial chemotherapy regimen and they wanted to confirm things like the hormone status of the cancer cells because this determines how they treat the cancer. The radiologist said he would view the pathology results as a sign that indeed the chemotherapy is doing its job. I will see Dr. Livingston, the medical oncologist, this coming Tuesday before I have my chemo so maybe he will be able to explain it all better to me.

Regardless, I feel like I'm recieving the right care. My previous oncologist was going to give me two more treatments of the Taxotere and then send me to surgery. I was really worried that the surgery was going to be done too soon, before they had eradicated as much of the cancer as possible. This is vitally important when the diagnosis is Inflammatory Breast Cancer which is what I was being told I had at the time. I've also learned it is very important with the hormone status of my cancer cells. I am what they call triple negative. This means that my cancer cells did not have estrogen or progesterone receptors or something called Her2. Triple negative cancers are generally more aggressive, but respond well to chemotherapy. They also have a higher chance of metastasis than other breast cancers and therefore a poorer prognosis. However, if I have a complete pathological response at the time of surgery, which means there is no sign of the cancer in my breast or lymph nodes, the prognosis is much better.

My new doctors are giving me Abraxane which is another form of Taxotere once a week for two to three months instead of two more treatments two weeks apart. I've read studies where this has been shown to be very effective with locally advanced breast cancer. Plus, I am recieving the newest drug being used to fight breast cancer, Avastin. I am anxious to have the surgery over with, but feel like this new regimen gives me the best chance of beating this disease for the long-term.

Pam is coming back on Monday. I feel selfish because it is so helpful emotionally to me to have her here, but I know it has got to be hard on her family to have her gone so much. They assure me that they are fine and want Pam to be out here with me right now. She has a wonderful, amazing family and I know sharing her with me right now is their way of helping me fight this disease. They will never know how much their sacrifice means to me!

That's it for now!
Love you all tons!

Saturday, January 24, 2009

Back From Tucson

We got back from Tucson about five o'clock last night, but I was too tired and sore to attempt updating my blog. Sorry, I know people were waiting for news.

We started the day at 4 a.m. here at home and left at 4:30 in order to arrive at the breast radiology center in Tucson by 7 a.m. This is where they did another ultrasound guided needle core biopsy. I'll share what the radiologist said and did, but honestly everytime I go for one of these procedures I just get more and more confused and a bit overwhelmed.

They started by checking out under my arm. There is one lymph node there that has shown up on every test I've had done. Every report states that it has normal architecture and is no sign for concern. The radiologist agreed with this and so did not do a fine needle aspiration.

Next, they did the ultrasound of my breast. The radiologist said he would only do another core biopsy if he saw a definite area of concern; a definite area to target. I have a hematoma (blood clot) at the site of the needle core biopsy done last Friday and that showed up on the ultrasound. There was a definite shadowy area below that that he and the technologist discussed being something like a shadow from the hematoma and weren't sure at first if they would biopsy it or not. This was the only area he considered biopsying. This is in the upper right quadrant of my breast. He said the tissue in the other three quadrants looks normal except for swelling and skin thickening and there was no focal area to biopsy. He said this does not mean there isn't cancer or hasn't been cancer in these areas.

We asked about all five of the original core biopsies being positive for cancer and then the one that Dr. Lang did last week being benign. He said she must have just hit a region where there wasn't cancer. It does not mean there was any error in the original biopsies.

He finally decided he thought the shadowy region was not a shadow and did four core biopsies from that area. He said the tissue was very dense and tough. I know he had to use quite a bit of force to get the needle into the area. The samples were white. We should get the pathology results by Wednesday of this coming week. The possibilities are benign (though I don't think benign tissue is white), cancer, or dense fibrous tissue which would indicate scar tissue. This would indicate that there had been cancer there and the chemo was working and it was being replaced by scar tissue. To me, this third option seems like it would be the best one to get. We know I have cancer and if the biopsy showed scar tissue at least I would know the chemotherapy was working.

He also gave us another dose of reality, as if we need one right now. He talked about the ability to kill off cancer cells with chemotherapy, surgery, and radiation, but just like when you take medication for an infection, there are usually a few cells left over. He said just like the bacteria or viruses that survive treatment in your body, the cancer cells left are the strongest, most resistent to treatment and are the ones that cause reoccurance.

After we finished up at the radiology center, we headed over to the University Medical Center to have my port placed. My veins are bruised and irritated from the chemo treatments I've had so far, so this port is going to be a great thing to have, but I had a mini panic attack in the holding area and started crying. The nurse was a ten year breast cancer survivor and was very understanding. She gave me a few minutes alone with Joe and I got it all back under control. They started my IV and the doctor who was going to do the procedure came by and explained everything to me and I signed the consent.

Then, it was off to the procedure room. I had to move onto a radiology table under a large machine. I lay there while several people worked at getting everything set up and prepping and cleaning my skin. The tears started flowing again, but before too long the nurse gave me something in my IV that made me feel very relaxed. It didn't make me sleepy, but it calmed my nerves. The actual procedure took about a half hour. I was under a sterile drape the whole time with my head turned to the side so I could see and talk to the nurse. Two doctors did the procedure and explained everything they were doing throughout. It honestly wasn't too bad and I was able to walk back to the holding room afterwards.

When the numbing medicine wore off on the way home last night, it was very painful. Moving my head at all side to side made it worse, so I tried holding very still and that made my neck and shoulders achy. Luckily, when we got home, I took some more tylenol and a sleeping pill. Combined with not getting very much sleep the night before and all the stress of the day catching up with me, I fell sound asleep. I only woke up once during the night and took more tylenol. I'm still pretty sore today, but not as bad as yesterday.

I can't take the bandages off until Monday, so that will be my first glimpse of what it looks like. Everything is under the skin and the doctors said it would be barely noticeable.

After we finished up at the hospital, we headed over to the cancer center to have my stitches taken out from last week's biopsy. While we were there, we found out that Dr. Livingston had agreed to let me start my new chemo regimen this coming Tuesday, the 27th. He had originally wanted me to wait another week until February 3rd, supposedly to build up my strength. This would have meant an entire month between chemo treatments and was causing me a lot of anxiety. Everything I read says you do not die from breast cancer, you die from it metastasizing to other vital organs. I worry about it spreading all the time and a whole month off from treatment seemed like a long time to me. So, even though the doctors both told me they didn't think the additional week off was any cause for concern, they respected my feelings and agreed to start this week.

So, that's all the new news for now. I plan to spend this weekend resting and building up my strength so I go into this new treatment strong. I'll let you all know when we have news from the pathology report.

I know a lot of people were thinking of me yesterday. Thank you!

Love you tons!

Tuesday, January 20, 2009

Good, Maybe Great News, I think?

Ok, all of you who have been on this roller coaster of emotions with me over the last couple of months, tighten your seatbelts because here we go again!!! Dr. Lang's nurse just called me and said the pathology for the core biopsy samples Dr. Lang took last Friday came back BENIGN! Yes, you read that right, BENIGN!

Dr. Lang is not in the office today, so I couldn't speak with her directly. Her nurse said Dr. Lang feels it is because I have already recieved chemotherapy treatment. But, this must mean the chemo drugs are working, right? I honestly don't know what to think. I'm wondering if she just didn't get the right tissue? But, if the tumor is as big as they're saying it is and she did the procedure with the use of ultrasound, how could that be? She even made a point of making sure she got tissue that was white saying that indicated tumor tissue. She showed the samples to Joe. Maybe she didn't take samples from a wide enough region? Could the lab have messed up?

I go back up to Tucson on Friday. I am going to a radiological center that only does breast procedures. The radiologist told me to bring all my previous films for him to look at. They will do the ultrasound of my left underarm and possibly the fine needle aspiration if they see any lymph nodes and then they will do yet more biopsies of my breast tissue to confirm results.

I feel like I've done a pretty good job since all of this started of keeping my emotions pretty even. I got really low over the last two days and thanks to the wonderful notes people wrote to me, Joe and Pam supporting and encouraging me, and the arrival of the "Margarita Express" at my door yesterday (I love you, Carol and Norma!), I felt like I was back to being even keeled. So, I'm trying to not get too excited by this news until after I have the further testing and the doctors can explain in depth to me what it means, but considering when I had my first biopsy done all five core samples came back as malignant, this seems like good news, doesn't it?

Whatever it is all of you are doing out there, praying and sending good thoughts, please keep it up because for at least today, it feels like it is working miracles for me.

Love you all tons!

Monday, January 19, 2009

I Just Don't Know

How could I have a tumor large enough to make one breast larger than the other and not have known it sooner? That's what everyone wants to know, myself included. I asked Dr. Lang this and she said something about some tumors having pretty indistinct borders and being hard to feel.

I've honestly never been very good about going to the doctor for regular physicals. I've always been active and healthy and except for a rare cold never been sick. I did have a mammogram done five years ago. Then, this past spring after a girlfriend recommended her doctor, I did go for a physical. The doctor did a breast exam and didn't feel anything unusual. She did order a routine mammogram. Her office was going to schedule it, but then called because they wanted me to find out where I could go that was covered by my insurance. Well, I was busy with the end of the school year, then getting ready to go to Alaska with my family for my in-laws 50th wedding anniversary, going to Alaska, starting the new school year, and I just never got back to them. When I did have it done in September, it was read as negative, just dense breast tissue. No change from the one done five years ago. I did do fairly regular self breast exams. I am naturally pretty small breasted and thought it would be very easy to feel if I had anything unusual going on.

I realize that my breast must have gradually gotten larger over time, but to me it honestly seemed to happen overnight. I get dressed every day in front of the mirror in my closet. It was only right before my period started, when I'm usually a little swollen and tender, that I noticed the difference. I'd worn bikini tops to the hot tub on the cruise during the summer and had to wear one of those strapless adhesive bras with my gown for the formal night and did not notice any difference.

The first ultrasound and MRI did not identify any tumor. They didn't even say anything about abnormal breast tissue. Just dense tissue, swelling, and skin thickening.

With the diagnosis of IBC I was able to tell myself that the onset is so sudden there was nothing I could have done. I gave myself credit for being so quick to get to the doctors. Now, I'm left with a lot of questions, what ifs, and a sense of responsibility that I should have been better about going to the doctor regularly. Maybe if I had, the cancer would not be advanced. I just don't know.

Friday, January 16, 2009

Happy Birthday, Joey!

Today is Joey's 19th birthday! We are so proud of him and of the young man he has grown into! This is the first time ever we haven't been with one of our kids for their birthday. We had a celebration before he left for school, but it still feels weird. His email is if anyone wants to send him birthday wishes. I tried to scan a baby picture, but was having trouble getting the scanner to scan lighter pictures.

Age Three

High School Graduation

Thursday, January 15, 2009

Tucson Medical Update

Sorry for the delay in letting everyone know what we found out in Tucson. We had to stay overnight for testing. I'm also including a lot of medical information because I know some of you who read my blog have dealt with cancer yourselves.

Ok, everyone. If you're not sitting down yet, sit down now before reading on. Tucson went wonderfully! Both of the doctors we saw said they were completely sure I do NOT have inflammatory breast cancer! I do have locally advanced breast cancer which just means that the cancer from the breast has spread to the local lymph nodes. You can't even imagine the shock Pam, Joe, and I felt as we sat listening to the doctors!

The first doctor we met with was the surgical oncologist, Dr. Lang. She is the one my sister found out about on the Internet. She did a year fellowship at the Inflammatory Breast Cancer Center at M.D. Anderson in Houston. This center deals with IBC patients from all over the United States and the world. They've been open since 2006 and have seen over 200 IBC patients. She saw a lot of IBC during her time there and she says that is definitely not what I have. When we saw Dr. Livingston, the medical oncologist in the afternoon, he said he definitely agreed.

So, how did the Mayo clinic give me the wrong diagnosis? That was a big question that came right away into our minds. They said my tumor is large, encompassing a lot of the breast,so especially before I had any chemo, the margins may have been hard for them to feel. Also, because it is large, it blocks circulation throughout the lymph system creating the swelling and breast enlargement that are typical of IBC. They also said because IBC is so rare, that doctors just don't see it very often and aren't familiar with it.

Ok, here's more good news. The five year survival rate for locally advanced cancer is as high as 75%!!! That's about double the 30 to 40% survival rate for IBC!!!

I should be singing and dancing around, but I think I'm still in shock. And, exhausted from two days of seeing doctors, being poked with needles, and having tests done.

Dr. Lang is amazing! She is in her young thirties. She is passionate about treating patients with IBC and advanced breast cancer. She spent over two hours with us the first day, doing her exam, explaining everything, and patiently answering all of our questions. She then came in at the end of our appointment with Dr. Livingston for about twenty to thirty more minutes, so they could talk with us together about what they'd talked about and my treatment plan. Then, today, she came back to the cancer center from the hospital between two surgeries so she could do a needle core biopsy. This is the same kind of biopsy I had done at the Mayo Clinic, but she and Dr. Livingston wanted to do another just to double check the results. The pathologist tests the cancer cells for things like estrogen and progesterone hormone responsiveness and a test called Her2. My initial biopsy said I was negative for all three of these. If I were positive, there are hormone therapies and a drug called Herceptin that would be used in my treatment. Being, triple negative means they can only treat me with chemotherapy. So, they just wanted to be absolutely positive before deciding what chemo drugs they will use.

Dr. Livingston, the medical oncologist, talked to us about what chemotherapy he has in mind assuming for now that my results will be the same. They are two cutting edge drugs called Abraxane and Avastin. The Abraxane is in the same family of drugs as the Taxotere Dr. Polowy added to my regimen four weeks ago, but the Taxotere is attached to some kind of solvent to get it into your tissues and has side effects related to that. One being that they have to give you steroids, which have their own set of side effects, to prevent allergic reactions. The Abraxane is attached to a protein called albumin and so has less side effects and you don't have to have steroids with it. The Avastin is a drug that I think has only recently been approved for Her2 negative breast cancer patients and does something with blood vessel growth. I still have to research these more. I would get both of these once a week. What's a bit amazing to me is I had asked Dr. Polowy about once a week Taxotere because I had read about a study done that showed it was more effective than every two to three weeks and he said no, that was only for patients who had metastasis. I had also asked his nurse, he had left the room already, about Abraxane, and she said no they only used that as a second line drug. Dr. Lang told us Dr. Livingston is well known all over the United States and I felt so confident in what he was saying. He is an older gentleman who has been a medical oncologist for almost fifty years and he is still working on research and being at the forefront of breast cancer treatment. He was very kind and really seemed interested in me and what my thoughts and feelings were.

Today, I had a CT scan with contrast to again rule out metastasis and again, it was negative! It didn't even show any axillary or other lymph nodes. This doesn't mean the cancer isn't in the lymph nodes and both Dr. Lang and Dr. Livingston think it probably is, but at least it's not so overwhelming that it's showing up on the scans I've had done. We'll only definitely know once they've removed the lymph nodes during surgery and we get a pathology report. Hopefully by that time, even if there was cancer in them, it would have been eradicated by the chemotherapy.

Both doctors said we have a good chance of curing this. Dr. Lang said we have a big fight ahead of us, but the outlook is much more positive than if I did have IBC and Dr. Livingston said he is optimistic.

I go back next Friday for an ultrasound of my axilla (underarm). So far, nothing has show up on any of the tests they've done. The doctors think it has something to do with my lymph system and with the tumor and swelling putting pressure on the blood vessels. If they see lymph nodes when they do the scan, they will do a fine needle aspiration. I didn't ask, but I think this would enable them to do pathology for cancer cells. I will be getting a port put in which is a kind of permanent intravenous line so I don't have to keep getting stuck with needles all the time. And, I should be ready to start my new chemo regimen by the end of the month.

So, the three of us are exhausted! Between the emotions of moving Joey up to NAU, waiting to go to Tucson, going and hearing all the unbelievable news, and having all the testing done, it's been a long week. But, we are all so excited and feel that everyone's thoughts and prayers have helped lead us to the doctors that are going to be able to help us beat this. The doctors said if I respond well to the chemo and they can do the mastectomy and get what they call clean margins, I will be cured! The new key words we live for now are complete pathological response; a fancy way of saying cured. This is so much better than no evidence of disease which means we think we got it all for now, but it will probably show up again somewhere else in the future!

Sorry for going on and on. Our minds and emotions are just whirling!

Love you all tons!
Till next time,

Tuesday, January 13, 2009

I Love My Book Club!

Just wanted to post and say thanks to my fellow book club members and tell them how much I care for and appreciate them.

When I got up this morning, my blood counts must have still been low because I took my shower and then couldn't get myself up off the couch for two hours! I finally forced myself up and then gradually throughout the day I felt myself getting stronger and stronger. I can literally feel when my Neulasta shot has kicked in and my counts are climbing. So, I was feeling well and was able to go to book club tonight.

As always, we had a wonderful time. Lots of laughter and commiserating and sharing of our lives. When the waitress took our money we told her thanks and she said, "Thank you. You are all so nice and happy. Most people aren't so happy."

I left tonight feeling so very cared about by the girls and full of positive energy for tomorrow and just wanted to say thanks!

Love you tons!

Monday, January 12, 2009

Joey is Moved In!

Joey is officially an NAU Lumberjack! This weekend was move in weekend for NAU. Pam, Joe, Joey, and I drove up Friday night and stayed at the Embassy Suites on campus. Saturday was move in day! I was four days out from my chemo and did amazingly well. My stomach would get upset, but it seemed like I was able to keep it under better control this time versus my previous treatments. Maybe I'm just getting more used to the chemo or maybe I was just so excited about helping Joey move in that it was below the surface. At one point, Joey and I were walking through Target together and he gave me a hug and said, "I love you Mom. I'm glad you're here." Of course the tears started flowing. Any thought of a sick stomach was far from my mind at that point. I did get tired out pretty easily and had to take breaks, but overall I did great.

We had so much fun! Moving your child out from home for the first time is sure an emotional time. I was missing Joey before we'd even started moving him into the dorm and yet at the same time was feeling so excited for him. The dorm room seemed really nice. I'll post a couple of pictures Joey took below. His roommate wasn't there yet while we were moving in, but Joe went back in the evening and got to meet him. He seemed really nice and Joey has said they get along well, but he is planning on moving out to a fraternity in a week or so. I guess it might be nice for Joey to have the room to himself, but I would have preferred if he had a roommate to hang out with.

We did not buy that refrigerator! It comes with the dorm room. We have Skype set up on our and Joey's computer and he already called and checked in with me this morning. He seems very happy.

Not much change on the cancer front. I've been pretty wiped out today, but it is probably just the weekend catching up with me. Today is also the day my blood counts are at their lowest before they start rebounding. I had my repeat ultrasound and MRI last week and am awaiting the results. The ultrasound radiologist was certainly not encouraging. She had a technician in with her who was training to do breast ultrasounds and said things to her like, "You should never see skin thickening like this" and "This tissue looks very abnormal." UGH. I just told myself that she wasn't comparing it to the original ultrasound, so even though she didn't think it looked good, it could be an improvement over the first one. The doctors' appointments in Tucson were rescheduled for Wednesday. This was the first day both doctors could see me on the same day. We are taking reports and films from all the procedures I've had done and they will be able to tell me what direction things are going in. Good thoughts and prayers for positive news are greatly needed and appreciated. Every time in the past when we've worried about test results, they've been good. I hope the trend continues!

I went to a first meeting of a physical fitness program for cancer patients today. It is a program that was started by a personal trainer who had a client diagnosed with ovarian cancer. She worked with that client all through her treatment and really saw the need for and role of keeping physically fit for cancer patients. She and another personal trainer researched and found a program in California and have modeled theirs after it. It lasts for ten weeks and is held at the Mountainside Fitness Center here in Gilbert. We meet twice a week and they help you develop a personal fitness plan that you can continue with afterwards. Mountainside Fitness gives you a free membership for the ten weeks and the program is funded through grants and donations, so there is no cost to the people who participate. I was really excited about going. Before I was diagnosed, I used to go to the gym an average of three to four days a week. I haven't been at all since finding out I had cancer. I feel run down and tired a lot and am anxious to start doing something positive to change that. Plus, I got to meet six other women who have been battling cancer a lot longer than I have and they all had such positive attitudes. I think participating will not only help me physically, but emotionally, too.

Janaya plans to be home from work early tonight and Michael is off after working the playoff games all weekend, so we're planning a nice family dinner. It will be weird not having Joey at the dinner table, but nice to spend time with Janaya and Michael after being gone all weekend.

Bookclub tomorrow night! I've been looking forward to it for weeks!

That's it for now. I hope all is well with each of you. I'll update when we get back from Tucson.

Till next time,
Love you all tons!

Wednesday, January 7, 2009

New Update

Yesterday was chemo day, again, and everything went smoothly. I'm feeling surprisingly well this morning. Maybe my body is getting a little bit used to the drugs?

We continue to have mixed feelings about my medical oncologist. He is nice enough and seems to have a basic understanding of IBC and the standard course of treatment for it, but does not seem to have cutting edge knowledge. He was still unsure about what is going on under my arm. I told him I had found one picture on the Internet that looked exactly like what I was demonstrating and that the caption underneath said it was caused by axillary venous thrombosis (small blood clots in the veins under your arm) caused by the breast cancer. I coulnd't find any other information about this. After I told him this he said we would order an ultrasound. I also talked to him about talking with the doctor from the IBC clinic in Houston and his suggestion that we have a follow up MRI now that I'm about halfway through my chemo treatment. He agreed to this also. We talked to him about drawing blood for tumor markers and following those. He said he wouldn't really use them to inform treatment decisions as their peaking and lowering can lag behind what is actually happening in my body, but did agree to have them drawn. The visit at this point had lasted maybe 15 minutes. He then told us he was sorry, but he had to go. It wouldn't be fair to his other patients to stay longer. This seems to be the pattern of our visits. Does it make sense that we're a bit uneasy with him? I don't like the feeling of always being the one to bring up treatment or diagnostic ideas. I want him to do that and be able to explain them to me.

However, on the more positive side, after we left from getting my chemo, the doctor from the IBC clinic in Tuscon sent an email and had her nurse call us. She would be very happy to be involved in my care. We are going up to Tuscon on Monday to see her (she is a surgical oncologist) and another doctor she works with who is a medical oncologist. We've researched both of them on the web and they both seem very knowledgeable in the treatment of IBC.

After that, later in the evening, a medical oncologist here in Phoenix that has come highly recommended to us called us personally. This was around 6:30 in the evening. He knew the doctors from up in Tuscon and was even familiar with what treatment protocol they might want to put me on. He said he would be glad to take me on as a patient, but wants to let the doctors in Tuscon lead the way as to whether they want to act as my primary doctors and provide care or if he would be my primary doctor and they would act in a more consultative role. All in all, I went to bed feeling much calmer and feel we are moving in the right direction. The medical oncologist that called me last evening said, "This is what it is, but we'll do everything we can to beat it." I liked that.

That's it for now!
Love you all tons!

Tuesday, January 6, 2009

A Busy, Emotional Week

The week has gone by quickly and I'm off to chemo again in an hour. I thought I'd take a few minutes and update everyone.

My sister, Pam arrived on Wednesday along with my nephew, Connor. Connor is one year younger than Michael. Pam took him and my two boys up to Flagstaff for a weekend of skiing/snowboarding and they had a great time. Then, last night, Michael took Connor to a Ska concert. Ska music is a lot of instrumental; saxaphone, trumpet, etc. with vocals. They spent the evening body surfing the crowd and mosh pitting and came home exhausted and sweaty. Teenagers' idea of a great time! Connor left early this morning so he can get back to school. We'll miss him.

One of the highlights of the week was Joe and I going up to Sedona for the weekend. Joe found a place to stay right on Oak Creek. It had a fireplace and a jacuzzi right in the room. We drove up Friday night and went out for a great dinner at the Cowboy Club. This is a steak house where many movie stars including John Wayne used to eat when they were in Sedona filming. Saturday, we had breakfast in the room and then headed into town for a day of browsing through the shops and galleries. There are many beautiful things to look at. I felt a little sad for the shopkeepers. There were a lot of people in town looking, but very few purchases being made. We were met at the door of most places we went into and told that everything was 25% off. I felt bad for not buying anything. By 2:00 we were tired out and headed back to the place we were staying for a while. Just in time to see the Cardinals game! The housekeepers came in while we were watching the game. Joe was sitting on the end of the bed in front of the TV and I was sitting in a chair off to the side, working on a scarf I'm making for Joey to take to Flagstaff and watching the game. After the housekeepers left, Joe said they were probably thinking, "Poor girl. Visiting Sedona for a romantic weekend and her husband is making her watch football!" In reality, it was me who wanted to watch the game and Joe humoring me! Another nice dinner out at an Italian restaurant that was pricey, but not as good as Rigatoni's here in town. Sunday morning, when we woke up, it was snowing outside. The rock formations were beautiful with the snow on them. It was a wonderful, romantic weekend.

Another highlight of the past week has been helping Joey get ready for his move up to Flagstaff this coming weekend. We are all so excited. We've been out buying all the things he'll need in order to live away from home for the first time. NAU has a hotel right on campus. We made reservations for Friday and Saturday night. That way, I can go and help even if I'm not feeling well from the chemo I'll have a place to rest when I need to.

It's also been a busy, emotional week on the cancer front. Through the listserve I joined I've been in touch with a lady who is the president of the Inflammatory Breast Cancer Foundation. She has spent time emailing me and also put me in contact with the doctor who is the head of the Inflammatory Breast Cancer Center in Houston, Texas. Both of them felt that although my oncologist is treating me with the standard protocol for IBC, that he isn't doing enough to monitor my response. The swelling and tenderness under my left arm which had gotten better after my last chemo is back and they were concerned about this. They both felt I should be seen in Houston and that I should plan on having my surgery done there when it was time by their team of specialists. The idea of going to a center that specializes in this rare disease seemed to make sense, but once we started researching it is out of network for both of our insurance plans. The bills associated with my treatment are huge and there is no way we could afford to cover 40% of the cost. So, I was left feeling like I'm not getting the best treatment from the oncologist I have, but unsure what step to take next. Then, Joe spent a long time yesterday with a good friend, John, whose wife had breast cancer. When Joe sat and talked with Pam and I about their conversation, it made it all the more clear to us that the oncologist I have now is not doing enough. John highly recommended the oncologist his wife saw and we called first thing this morning and made an appointment.

In addition to this, Pam was doing research on the Internet last night and found that there is a doctor up in Tuscon who did her fellowship at the IBC Cancer Center in Houston and has started an IBC clinic at the U of A Medical Center. I have no idea why the doctor in charge of the Houston program wouldn't have told me about this resource so close to home other than there is some competition between centers. This left me with a bad feeling. We are going to contact the doctor in Tuscon later today.

As if all this going on wasn't making me feel frazzled enough, while we were researching this doctor up in Tuscon we found a video presentation she made to other doctors giving an overview of IBC, it's symtoms, diagnosis, and treatment. In the video, she says that the prognosis has not improved since the 1970's and that the five year survival rate continues to be somewhere between 30 and 40%. I've been told that they've learned a lot about treating IBC and that the survival rates were improving. I'm focusing on this and on the women on the listserve who are long-term survivors, but it was definitely unsettling last night to hear that video.

So, as you can see, lots going on around here. I'm off to chemo in just a few minutes. I'll let you all know what we find out from the new doctors. Please keep the wonderful thoughts and prayers coming, they help immeasurably.

Love you all tons!
Till next time,