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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Thursday, July 30, 2009

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!).
Wednesday, July 29, 2009

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).
Saturday, July 25, 2009

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.
Friday, July 24, 2009

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!
Thursday, July 23, 2009

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.”

Tuesday, July 21, 2009

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.
Sunday, July 19, 2009

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/
Saturday, July 18, 2009

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.
Thursday, July 16, 2009

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!
Sunday, July 12, 2009

Research on the Chemo Treatment Plan I'm Receiving

From the
Adjuvant and Neoadjuvant Chemotherapy for Breast Cancer
San Antonio Breast Cancer Symposium 2005
Date: December 8-11, 2005
Location: San Antonio, Texas
Author: Lee Schwartzberg, MD, FACP

Full text here: http://professional.cancerconsultants.com/conference_sabcs_2005.aspx?id=35828

"Adjuvant Chemotherapy - Refining the Role of Taxanes

Several large adjuvant trials evaluating the worth of taxanes were presented this year. The most eagerly awaited was ECOG-1199, testing two different hypotheses in a 2 x 2 design: First, whether there was a clinical advantage to Taxotere vs. Taxol and, secondly, whether weekly or every-three-week scheduling of taxanes was superior.[7] Five thousand women were randomized to one of four arms, 88% had lymph node positive disease and 20% were HER-2 positive. Taxol given every three weeks was considered the standard arm and was compared to Taxol weekly or Taxotere given weekly or every three weeks as the experimental arms. At a median follow up of 47 months at this fourth interim analysis there is no significant difference between Taxol and Taxotere (p = 0.83) nor between dose schedules weekly vs. every three weeks. However, an explanatory analysis revealed that weekly Taxol vs. every-three-week Taxol was 20% better, p = 0.06. The Taxotere arms did not differ significantly from Taxol every three weeks but had more Grade III and IV hematologic toxicity. So far the findings of E-1199 provide no reason to alter our current approaches to adjuvant chemotherapy of breast cancer.

A German adjuvant study compared 6 cycles of FEC to 4 cycles of FEC plus eight weeks of Taxol in node positive patients.[8] At 46 months of median follow up, FEC plus Taxol had a DFS of 85% vs. 79% for FEC alone for an HR of 0.063 (p = 0.006). Overall survival is numerically better for FEC plus taxol, 94% vs. 92% for FEC, which is not yet statistically significant. Toxicity was manageable in both arms."

Chemo Process

Found this link and it shows one man's experience with chemo. They won't be able to take my blood through the port at the office I'm using though. That will have to be done through the vein in my arm each time, but the rest of the process should be similar.


Chemo Port Revealed

Removed the bandages today. It feels good to have the bandages off. They were really beginning to tug at my skin! It appears they had to make two incisions. I'm not sure why. I had only expected one, so I was a bit surprised. It looks pretty bad right now. I really hope that when it heals the scarring is minimal.
Saturday, July 11, 2009

Re-Scheduled and Installed

Re-Scheduled and had my port installed Friday at Harris Methodist Downtown. Surgery went well, but still a bit sore. I slept about 16 hrs straight after I got home.
Thursday, July 9, 2009

Canceled Port Surgery for Tomorrow

Canceled port surgery for tomorrow. After asking a few questions and learning a little about more about the procedure, I feel the surgeon I chose is inadequate to perform it. I'm going to look into having it performed next week at Harris Methodist Downtown by a more qualified person and see about delaying chemo for a week.

The surgeon called and was very unprofessional and rude and not willing to listen to my reasons. Above all else, I just had a general bad feeling about it, and I tend to listen to these gut feelings and tend to have better outcomes when I do.

Another Disappointing Reconstruction Consult

I had a consult with Dr. Duffy in Dallas today. He is the only one in DFW area that offers any alternatives for reconstructive surgery (other than implants and TRAM flap). He was sad to say that I was not a good candidate for DIEP or SIEA. He said my best chance was SGAP, but that he had only done a few of these and didn't feel comfortable with doing mine. It looks like I'm either going to have to deal with implants or have my reconstruction done at MD Anderson or in Louisiana (that's where there are several doctors who invented these types of procedures and they tend to train all the others). At least this guy seemed like he was upfront and honest, and I would recommend him to anyone who has enough belly fat for DIEP (that is why I wasn't a good candidate, lack of belly fat).

On a good note though, I did finally get in touch with the advocate at MD Anderson today. After leaving 3 messages over the last week, I finally managed to get someone to page her and get her to the phone. I discussed all my issues and what I was expecting (both when I went down there July 1st and on August 11th) and she is going to check to see what is currently being done, what happened back on July 1 that caused the confusion and make sure things go as I am expecting on August 11. I should hear back from her within 24 hrs.. we'll see.

Tomorrow I have my port surgery. Jesse was going to with me, but he received a call from his boss today so he is going to have to go into work. Jaclyn has agreed to go with me. I'm a little nervous about this one as it is my FIRST surgery ever. I hear it leaves a nasty 1-1/2"-2" scar, too. I think by the time they are done with all these surgeries I'm going to resemble Frankenstein.

Chemo Education Completed

Spent a good hour or so with the nurse practitioner at Dr Krekow's office receiving specific information on my course of treatment and the possible side effects.

Sounds like tons of fun, doesn't it? May need a back up for port install Friday. I think Jesse needs to go in at sometime to sign the paperwork HR requires to complete his lay off process. We are not sure what time they will want him there, but when I find out I'll post it.
Tuesday, July 7, 2009

Oncologist Consult

We met with Dr Krekow earlier to discuss starting chemo. Here is the plan:

Wednesday, 7/8/09: Chemo Training (this is where they warn you about all the side effects etc and educate you more about the process)

Friday, 7/10/09: Surgery to install the port-a-cath. A port-a-cath is a small port they will put on the left side of my chest that goes into a vein. This is what they will tap into during each blood draw and chemo treatment.

Every Thursday (not sure of the time yet) for 12 weeks, starting 7/16/09, chemo treatment of Taxol. From what she says, most people don't have extreme side effects during this treatment. Most people do not lose their hair during this treatment (but it is possible).

After that, we will set up a schedule for CEF chemo treatments (cyclophosphamide, epirubicin, and fluorouracil). This is the bad one. These will have the chance for all the really nasty side effects. They will try to give me anti-nausea drugs and other drugs to ease any side effects that occur. Most people do lose their hair during this treatment. I will have 12 weeks of this, where I go once every 3 weeks (so 4 treatments over 12 weeks).

I picked up a wig today. I found one that I think looks very much like my own hair. I wanted to get this before our insurance coverage ends, and before I started treatment just in case. I think it looks pretty good. There is a picture of me in it here:

Another Bump in the Road

Yesterday morning, I was awakened by phone call from my husband. He told me had received a layoff notice. He has until Friday to make a big decision on whether to take the severance package or stay employed for 60 more days and try to find a job within the company. If he chooses the later, he will lose the severance package. Could they have worse timing?

We spent most of yesterday getting his resume out and networking with everyone we knew to try to start finding him another job. I made some phone calls to find out what the insurance situation would be. The bad thing about cancer is that if your insurance coverage lapses at all, insurance companies will consider it a pre-existing condition and not cover any future treatments. I really was scared that we would be unable to afford COBRA and we would not be able to afford to treat my cancer. However, after I calmed down a little and made a few phone calls, I was happy to find that there are some resources in place to assist with this situation.

I called the American Cancer Society and asked for resources to assist with this issue. They have an entire department dedicated to providing information to people in this exact situation. What a great organization they are! They are an endless source of information and hope. If you ever want to donate money to a charity, this is one to keep in mind.

I spoke to a nice lady named Molly there, and she informed me that there is a part of the federal stimulus package that will subsidize 65% of the cost of COBRA for someone who is laid off for up to 9 months. I also found out, that if you still can't afford the cost of COBRA, there is medacaid coverage for breast and ovarian cancer. This means either way I can still continue my cancer treatment. The information they provided reduced this from a crisis to a bump in the road.

We still need to help Jesse find a job. If anyone has any leads, PLEASE let us know. He has a strong background in the Network Administration and Information Systems field. We are hoping to find something here in the Dallas/Fort Worth area if possible. If you know someone who you could send a copy of his resume to, email me and I'll send you a copy.
Friday, July 3, 2009

Houston Again in August

Looks like we will be heading back down to Houston in August. Just received a call from MD Anderson schedulers saying they have a breast surgeon and radiation consult set up for me on August 11. If all works out, Katie should be at church camp that week.

I guess I will need to talk to the oncologist here who is going to do my chemo and discuss timing it so that I'm on one of my symptom free days (if I've started by then).
Thursday, July 2, 2009

Home Sweet Home

Made it home.

Frustration in Houston

Yesterday we spent over 6 hours at MD Anderson. Finding parking is a very difficult. We had initially planned to use our one free valet parking, but forgot to leave some of our valuables at home and decided to just use a parking garage. Parking garage 2 which is the closest one to where we needed to be was full, so we ended up parking a few blocks away at garage 10. The hike was hot and tiring lugging all the things we needed and wanted to bring along.

Once we made it to our entrance and went in, we searched for the 'U' elevator we needed. The place is really confusing. They have multiple banks of elevators that take you to different places. If you take the wrong bank of elevators to the right floor you end up in the wrong place. Finally found a security guard and he pointed us to our bank of elevators.

We arrived at check-in early and they got us in right away. I was disappointed that the lady registering couldn't answer questions on some of the things I had to sign, but other than that registration went smoothly.

After registration we grabbed some lunch at the waterfall cafe. With all of the stuff we had to carry we had to take turns getting our food. Jesse went first and the place was rather confusing and he came out the wrong door and didn't pay. I asked him if he had to pay and where to pay so I'd know and he was unsure. He also forgot to grab a fork. I went in and got mine and figured out where he should have gone while searching for the silverware. I explained to the lady the situation and was trying to pay for his salad as well as mine, but she said she needed to weigh them (rather rude about actually), so I went and got his salad so she could weigh them both. We ate and then went back to wait for our next appointment.

We had just found a place to sit and I went to use the restroom, and when I came back the nurse was already trying to take us back. They did the usual weight, height, temp and blood pressure and put us in a room. An intake nurse asked a few questions and then they left us in there for hours. Cell phone and wireless reception were dead in the room, and there was nothing to do, so we both took a little nap.

Hours later the Oncologist arrives. We had about an hour long consultation with him. I did get some information out of him regarding what type of chemo regimen he would prescribe, and also that the order of things was not really important in our case. He said personally, since I hadn't had time to consider all my options on reconstruction, he'd advise me going ahead and starting chemo first. I thought that sounded like a good idea. He also said where I had the chemo done wasn't important. I could have the same chemo regimen here as I could there. He said he'd advise having surgery there due to the fact that their surgeons are only breast surgeons. Their surgeons don't do cosmetic nose jobs and other non-essential cosmetic type surgeries. I think I will explore the one doctor in Dallas still that specializes and see if I feel he is adequate or if I should heed this advise and deal with the inconvenience of having the surgery in Houston. He said as far as radiation goes (which he said it looked like I'd need) the only difference in quality would be the type of machinery they had. As long as the place I was being treated at had the newer machines with the 3D CT Scan, rather than the older ones, I'd get the same quality here as I would there. He also seemed to concur on my concerns regarding inadequate screening methods for women with dense breasts. He did not seem to think bilateral masectomy was a bad option for me.

After the appointment, I asked about a possible consult with a breast surgeon, plastic surgeon and radiation dr there. He said he'd have those set up. I thought he meant that day. It turns out that it would be weeks before I could get in to those. So I may be making a trip back down here in the near future. I also inquired about the rest of my 2nd opinion. I had requested a full second opinion from the biopsy slides up. I was expecting to walk away with all the information I needed to know to make informed decisions. This didn't happen. Since it was so late, there was no way to talk to anyone that evening. We were advised to call back in the morning and speak to an advocate or a scheduler. They also didn't seem to have all of my paperwork in their office and that concerned me. If I wanted my x-rays reviewed I had to leave them there, I hope they dont lose them. We have back ups of the films on cd, but the mammograms and ultrasounds are the original films. I sure hope they don't lose them out there.

I came home rather frustrated last night. I'm feeling like this was somewhat of a wasted trip. About the only thing I got out of this, was that it didn't matter which order I did things in. It helped me to make the decision to do chemo first, while further investigating my options for surgery and reconstruction.

This morning I called the lady who had coordinated my visits. She is also the one I have been faxing all my reports to. She said she takes all those faxes, puts them in a file and gives them to the nurse at the doctors office you are coming to visit. I think there may have been some confusion there, since they switched dr's on me at the last moment. I wonder if the rest of my reports are in breast surgeon's office they had me originally scheduled with? Anyhow, she transferred me over to patient advocacy. Of course I got voicemail.... I left a message and I am awaiting her call.

I called my local dr's office and made an appointment for a consultation with the ocologist there. The doctor I will be seeing is Dr. Krekow. I have an appointment with her Tuesday at 3pm to discuss the possibility of starting chemo first.

I guess we'll be packing up today and heading home. At least I get to see Katie swim on Friday...

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