Making sure my heart makes good "beep beeps"
I adored the oncologist team up at Huntsman Cancer Institute. They really finally sat us down, and gave us real answers with real options. I have all of my lab and pathology reports in my binder now. The team met about me this morning, the team consists of my oncologist, surgeon and other experts in breast cancer treatment. They determined my treatment options.
They laid out two breast cancer treatment options (two kitchen sinks):
Surgery now > Chemo > Radiation >Tamoxifen
The benefit to surgery now is that I would have it done and would know what stage I am at. I would also have my expansion done before the summer.
Chemo now > Surgery > Radiation > Tamoxifen
The benefit here would be that they could see the physical impact of the chemo treatment on the tumor before surgery, but they wouldn’t know the full extent of my cancer as they may have killed the cancer in more of the lymph nodes before they take them out.
The big issue that came up this week is that the cancer that showed up in the area of my lymph nodes was grade 3, which is the very aggressive cancer grade (the grade in my breast was grade 2). So I have a higher risk of having cancer cells in other places that they should not be. All of the cancer cells I had were estrogen (90%) and progesterone (70%) positive, the Her-2/Neu was negative (which means I won’t need herceptin, which is a great treatment for that, but also rough on your heart). I will be given Tomoxifen for the next 5 years to block estrogen receptors in cancer cells.
They told me that my choice on which order I go is entirely up to me and the impact on the final outcome is 50/50 (shouldn’t make a difference based on whichever). I started to sway towards starting chemo now – as that was the option and it would be nice for them to know how much the chemo killed the cancer knowing that it would have gotten any stray cells.
I bought my first hat for chemo!
We scheduled me out for chemo and planned it all out and it suddenly came to me: “I don’t want a big surgery in the middle of the summer!” You have to wear drains for several weeks and the breast expanders would be much more uncomfortable in the summer as they would be brand new. I would rather be worn out, but more comfortable at least riding on our boat this summer rather than toting around drains and dealing with expansion. So at the last minute I changed the treatment back to having surgery first so that I can hope to at least get out a little more this summer.
I meet with the plastic surgeon Tuesday morning, hopefully he can give me the real low down on what radiation will do to my reconstruction options, so I should have more info then. I am also waiting for them to schedule my full body CT scan to double check for tumors anywhere else in my body. I had an electrocardiogram so that they have a pre-chemo recording of my heart function.
A prescription to buy a wig!
They did plan out my chemo – with the current data that they have, I am scheduled for 16 weeks of chemo going in every other week. I get what is called Dose Dense AC Followed by Dose Dense T. My personal cocktail will be Adriamycin and Cytoxan for 4 times (once every other week over an 8 week period) followed by Taxol 4 times (once every other week over an 8 week period). Both will cause hairloss, thus I have my very first prescription for a “Cranial Prosthesis” which means a wig, so it is time to go wig shopping. They also suggested that I get a much shorter haircut in the next few weeks in order to get accustomed to having less hair (making the hair loss a bit less of a blow I guess).
My mom and I went to Carol’s Post Mastectomy Specialist and bought a special top that you use after surgery that helps manage the drains (and I learned that it is covered by insurance!). I also bought my first hat! Pictured above. The ladies there were so kind and a customer that came in was diagnosed when she was 30 over 30 years ago, she said a few kind words. They were amazed at the option that I have for surgery, I am glad that I have such a great team at Huntsman.
I start chemo 4 weeks after surgery, and then a few weeks after chemo I will go on to get radiation (no luck on getting out of that one eh?).
The Mandi Chair
It appears that I have been assigned to the high risk breast cancer team at Huntsman – the Oncologist I was assigned to, Saundra S. Buys, is the Director of the High Risk Cancer Clinic. This has left all sorts of questions floating around in my brain. I tried calling the nurses this morning. They hadn’t responded to my email request for the hormone receptors on my cancer cells. I left them a message.
This led to the following questions (I just got the phone call with the answers):
- Did my genetic test come back? No
- Is there something about my tumor that I don’t know? It is ER Estrogen positive (90%) PR Progesterone positive (70%)
- Did the biopsy of the lymph node come back with further information? Yes, the cancer is definitely in my lymph nodes. I will have a CT and several lab tests for staging tomorrow. I may start chemo super fast at this point.
- Am I going to have to have chemo before surgery? The answer is most likely yes, pretty much for sure. Most likely my surgery will be canceled. I am not sure what this will mean about my reconstruction options.
- What does this mean about my stage? Let’s not think the unthinkable, but I am not in a super happy zone of easy recover (not that recovery is ever “easy”) I believe the terminology used related to my treatment involved the words “kitchen sink.”
From my understanding of today’s conversation the doctors feel like waiting to start the chemo for another 3-4 weeks it would take to recover from surgery is a risk they aren’t willing to take. This also means they will know how much the chemo had an impact on the originating tumor before they take it out.
Laura, the quilt pattern and my wedding dress (in bag).
I don’t believe I noted that we managed to get a major snag on a black leather recliner that matches our couches off of KSL.com for only $75! It is incredibly comfortable and it fits me and two dogs comfortably (chairs that don’t fit the dogs and I, tend to end up a bit crowded because they decide they are going to sit by me no matter how uncomfortable it is). I have already taken over the “Mandi chair.”
Now for my happy thing this week. Laura, who is on my paid search team and a super awesome employee at work, has been finagled by me to make a quilt/wall hanging out of my wedding dress. She did it with her own dress and I thought it was a great idea! Otherwise the dress just sits in my closet taking up space – and I am fairly certain that it won’t be hand me down material as tastes change significantly. I think everything going on has made me a bit more sentimental and I really think a nice piece of art made out of my dress would be lovely to have on the wall and to someday pass on to family members as an heirloom. I am seriously super excited about this! Laura has an Etsy site: http://www.etsy.com/shop/happystitchesbylaura she does super cute baby car seat covers if you are interested.
I will update when I have the energy to do so, or talk Mike into it. Tomorrow is going to be the long day of preparations for the kitchen sink. I wonder if they will be ok if I start throwing lemons at it?
I like this ribbon better. (OMG! Laura is already working on my dress)
Here I stand in a billowing gown of Huntsman oversized goodness.
It is strange to be excited about an appointment at Huntsman! Even though I get super jittery a couple of hours (or for the day before, depending on the appointment). Appointments mean information and information means progress.What I need right now is feeling like we are making the baby steps to recovery. Progress and information have been a blessing and a curse. Knowing is so much better than spending many hours “wondering.” I have a bit of a wild imagination.
Today I went in for a breast MRI (an entirely new experience for yours truly). They were a bit backed up, so we waited an extra 40 minutes to get in there. The nurses and staff were super nice while they placed me laying down with my breasts flapping in the breeze. The outfit that they gave me was the glorious one size fits all in a lovely baby blue, with white and gray accents.
The nurses called the scheduler today to let me know that she needed to get me in to meet an oncologist. This threw me a bit off as I had understood that I would not meet an oncologist until after my operation. This made me slightly nervous for good or for bad as my path was surgery, then chemo, and then possible radiation they could be switching me to chemo than surgery (chemo can be done before surgery if there is concern about the cancer spreading sooner and further, it is also using on occasion to shrink down the tumor before they pull it out). Who knows if it means anything more than they decided to get me working with the oncologist early. I am hoping that is where I get the details on whether or not I officially have a hormone receptive cancer (and which one for sure!). I am also expecting the results from the biopsy that I thought I would get today, my gut knows the answer, but it can’t quite sink in properly without the official word that says it is what is seemed like it was (essentially that the cancer has spread to lymph nodes and possibly more -> worst case scenario).
It sounds like I need a CT scan to get the idea if it has spread, but I am making assumptions based on what I can find on the internet. I am ready for a little more Mandi centric information/life planning overload right now.
So, yes, an uneventful visit (unless you count the fantastic fashion statement I made today). Hoping for more based on my email request for the hormone information, lymph node biopsy results and results from today’s MRI.
Now that we know how much time we have until “S” day (surgery day), it is actually a bit more relaxed for me at home and at work. Rather than planning on possibly being out of the office I know when I will be, and rather than not knowing when we should have the bathroom done and the house scrubbed, we have a date.
I haven’t changed my mind about which surgery, each time give it much thought I feel like I made the right decision. The surgeon sent me home with a hardback picture book that walks through each graphic detail of each step of the “total skin sparing mastectomy.” I know I will lose feeling completely, but the look and the decrease in stress over the rest of my lifetime are so very going to be worth an extra week or two of recovery.
My little brother Dereck bought his first home this weekend (I may be just a bit jealous because it is new and doesn’t need remodeling (I think the last 5 years of working on my house influenced his “buy finished” vision). I decided Saturday that I would try for the “thoughtful” gift (hopefully he doesn’t hate it) I painted him a new picture for his condo. I tend to be bad about getting paintings out for those that request them, but I thought it would be nice to get one done for his new place as it is always hard to find the right things to hang on the wall.
I used to think I was going to be an artist when I grew up.
The black sun has always been a way I represented myself in my paintings since my early teenage years, in fact I have a tattoo of a black sun on my back for this reason (some people may call it a “tramp stamp”). I opted to integrate it in this painting so that my little brother always knows I am looking out for him no matter what (this is not being dramatic, I have always tried to look after my little brother, which means he is more often looking after me, but either way there is a “piece of me” in his new home). The painting is sitting on my glass coffee table with my rug under which clashes a bit, hopefully it looks better on a wall.
Mom tiling, again.
My mom and Steve have been back at the bathroom. My dad was able to stop by and say hello for a moment (my nephew’s birthday party was today and he was able to help Dereck get moved a bit). Hopefully we can get my mom out of the house and in bed at a reasonable hour, but there are no guarantees if you know my wonderful and stubborn mother. The bathroom is really starting to take shape, it is going to be a lovely oasis. We were going for a bit of a spa/escape flavor in our color and tile selection. My mom had a vacation scheduled for next weekend and I couldn’t talk her out of canceling it. Hopefully they get their own escape soon. It has been an interesting time for all of us.
We are running off an celebrating our friend’s birthday for the rest of the evening, and then our favorite baby’s 1st birthday party is tomorrow!
I look so excited in my fancy new gown at the Huntsman Cancer Institute.
Sorry for the delay, I am pretty drained after 6 hours at Huntsman Cancer Institute. Needing to be there at 10:30 I figured I would be out in time to eat a late lunch which turned out not to be the case. Luckily there are kind volunteers with juice and snacks that go around. They seem to know you are in for a long day, we just didn’t quite know that. From today, this is what I know:
At this time I have a double mastectomy scheduled for January 28th, 2011. I am not sure what time yet, but it was the soonest they could get me in for a larger surgery – if I change the surgery to a lumpectomy they will be able to do it sooner I believe. The bilateral mastectomy (two sided) would save my skin tissue and nipples (a newer advance in the world of mastectomies). I am mostly doing this for two reasons: peace of mind and I have a better chance of a final physical appearance that I will be happier with.
I can’t remember exactly which hormone it was responsive to, but it is a cancer that uses a hormone which makes it easier to treat with medications that they have today. I requested a copy of my pathology report and it unfortunately didn’t list it but I believe it was the HER2 receptive kind. Either way, this is good news, I have a very common and very treatable cancer.
I did give samples for them to test whether or not I have the genetic marker that can seriously increase the risk of breast cancer (and ovarian cancer). The lab will double check with my insurance on whether or not they will pay for it (the test out of pocket is $3,400). Mostly I would like the results of this test for my nieces and cousins, as they will need more screening more often. Per the discussions with the person responsible for the genetic testing, this would be more likely from my dad’s side of the family than my mom’s.
I also signed up for some studies where they will use my blood and keep track of me over the years. I will be signing up for another one that will use the cancer cells to test ways to kill them after they have been removed. I have the possibility of signing up for a third one that would involve them taking bone marrow while I am in surgery, I am undecided on that one at this time.
The surgeon had let us know that there was a teensy tiny chance that I was in the perfect window that would allow me to skip chemo after the surgery. After meeting with the surgeon, family/genetic specialist, woman responsible for the studies and getting my labwork done I was asked to go get another ultrasound on my lymph nodes (who knew? Sounded like a good idea though). Unfortunately I had a lymph node that came up with the wrong shape to it (they are supposed to look like kidney beans, not punching bags). They took a biopsy of the lymph node and I should have the final results Tuesday or Wednesday next week. At this time it appears that there is a strong possibility (although not guaranteed) that the cancer has spread to the lymph nodes. The number of lymph nodes that have cancer will determine whether or not I have graduated to stage 3 – I still believe I am most likely stage 2 though. I get chemo either way though – and possibly radiation.
I have been scheduled for an appointment with the plastic surgeon and a MRI in the next two weeks for surgery (sounds like they can also check out my lymph nodes from the MRI).
Love you all!
P.S. The doctor says I have nice boobs, FYI.
Glowy eyed Zack and Dante give you love and kisses, and if you know Zack he gives lots of slobbery kisses.
It seems that a lot of women have frequently had their surgery within a week of discovering that they had breast cancer, it has been two weeks for me now so I have had plenty of time to think about it (maybe too much time). The anxiety of it all finally got to me today so I ran errands for several hours to work off some steam (no spa, no exercise, apparently I use errands to run off steam). Part of the reason is because the errands were nagging at me to get them done.
I am sincerely hoping that they schedule my surgery tomorrow. I finally came to a decision on what I want to do if the surgeon supports it and insurance will pay for it, I have decided to get a double mastectomy. I can be talked out of it, but at 31 years old, reading all of the cases of women who went on 3 to 15 years later to get cancer in the other breast which includes my own grandmother. I have over 50 years left to live in my life and I am not sure I am up for this twice. I am hoping that this may get me out of radiation (*fingers crossed*). For those that wonder why radiation is such a concern is that radiation limits your options on reconstruction (ie. it means you have to use a muscle from your stomach or your back to create your new breast, which means more scars and more recovery, I would prefer the good old fashioned silicon route if I can).
I am hoping that tomorrow we find out what subtype of cancer I have. The subtypes involve the kinds of hormones that the cancer uses to fuel its growth – these include estrogen, progesterone or Her-2. The other kind that it could be is one that is not receptive to any of those, which these days is unfortunately a bit tougher to treat (called triple negative breast cancer). It usually takes about a week after biopsy to get this information, and it sounded like they anticipated having this information for me tomorrow.
To those that are curious about what stage I am – we will not know the stage (if the cancer has spread) until after I have had surgery (one of the reasons I want to go ahead and get surgery over with). I am most likely stage I or stage II.
I will try to get a basic update up on the blog as soon as I can, my appointment is at 11:00 AM.
My appointment tomorrow hopefully will get a lot of questions answered and hopefully get me moving toward a path to recovery (and maybe cut back on the number of cancer websites I read – what did people do before the internet?). Keep sending your love, prayers and good vibes. We appreciate all of the love and support we have received the last 2 weeks, we love you all!
****Public Service Announcement – This one may not be for the squeamish****
Now that I can start to look at my options a bit more closely without being nearly as traumatized. I started to take the time to learn about breast reconstruction related to breast cancer (of course a variety of items with the type of surgery you choose – but I don’t think it hurts to know what the options look like). The first couple of websites that I looked at brought a few tears to my eyes. Maybe I will feel differently further in, but at the moment, I don’t want to walk away from this looking worse than I did walking in… That may be hoping for a bit much, but wow, I have to look at myself every day in the mirror… I have always considered augmentation as something I would do at one point in my life (when the girls started to move south, I figured I may give them a little put of a push northward…)
I know the surgeon and plastic surgeon will have recommendations for me on what route to take, but I don’t like walking into this without knowing what I am in for (and I will be much happier if it turns out to be much less than I anticipate). I have read a variety of extreme cases, extremely “easy” to extremely challenging. They do want you to know what you want as the end result before you decide on your surgery (although the surgery options are tattooed into my brain: lumpectomy no radiation 35% chance of recurrence same breast, lumpectomy plus radiation 10% chance recurrence same breast, mastectomy 5% chance of recurrence of cancer in the same breast).
Also, looking at my first related medical bill from the 30th (which of course goes to insurance before I need to figure the rest out) – did you know a biopsy costs more than your average boob job? I feel like there needs to be that “The More Your Know” rainbow should go across right here (obviously I grew up in the 80′s…). Oh wait, found it!
Do they still have these kinds of commercials anywhere?
I was recently reading Robyn’s blog about her adventures with breast cancer (if you can call it an “adventure,” my aunt coined the term, so it sticks for now), and Robyn made a statement about whether or not she will someday forget that she had cancer. It made me feel not alone, heck, this adventure has only begun and as much as I try not to think about it it is constantly there (unless I am incredibly consumed at work for a bit). Which lead to a discussion with my husband this evening, he says I am a bit of a workaholic. I was fretting about getting behind and work and he rolled his eyes telling me that getting me to slow down at work will be a battle that we will have in the upcoming months. We will see… (I think I may have told him that I asked work for a laptop that would be easier to cart to chemo…).
One thing to understand, I am trying to come at this experience as upbeat as possible, but not everything about it is upbeat or happy. It is what it is, and I will make the most of everything that I can.
One of the Construction Zones
After a crazy and hectic work day Friday (sometimes you truly have those “everything that could go wrong really did go wrong” days) Mike and I got gussied up for a hoedown or something like that. His work has a dressy event every January and this year had a cowboy theme. We got dressed up and rustled up some grub. It was nice seeing Mike’s coworkers and being out and about. I’ll update this post once I get my hands on a picture of us from the event. We felt like total party animals because we had two parties Friday night.
Our good friend Tanner (yes it is a nickname) was officially moving to Europe for 2 years and his going away party was also Friday night. Maybe we will hold his box of tools hostage for two years, I kid I kid… We ran home and got out of our dress clothes and found my mom and step dad Steve working on the bathroom floor (the floor around the toilet was rotten and had to be replaced), they had been doing some serious carpentry work for several hours and looked darned near exhausted. We were able to talk them into heading home.
We then went out to the party for Tanner and had some munchies (homemade thin mints anyone?) and said hello to our group of near and dear friends. We were pretty tired and ended up not staying too late, plus we needed to get up at a reasonable hour to get in the bathroom remodeling groove.
We went shopping Saturday for a chair, Mike heard that I would want a recliner to sleep in if I can’t sleep in the bed. The $700 price tag on the comfortable Lazy Boy made me a bit shy. With remodeling going on and medical expenses to come, I am just not in the mood to purchase an expensive chair right now. My mom has a super comfortable chair with ottoman that I may steal for awhile (with a chair cover, I am a little crazy about things “matching”).
The True Face of Dedication
Mom and Steve have been over all weekend helping us with the bathroom, Steve manning the tile saw in the snow and the freezing cold late at night with my mom laying tile. With the tub cleaned up a bit, the paint done and some tile laid it is starting to look like a real bathroom in there. I finally had the energy to go ahead and make some homemade shredded chicken enchiladas Saturday. I will be making a huge pot of Market Street style clam chowder tonight.
Mike’s friend John got him a ski ticket and they spent all day up at Deer Valley (Mike’s first time out on the mountain this winter and he looks a bit bow legged and is on the sore side). I spent the day running errands with my friend Julie, luckily Julie doesn’t mind running all over town to buy the right soap dish and looking at some new comfy lounge clothes that should be easier to put on and are baggier in the right places.
I think the initial emotional shock has finally started to wear off and we have started to feel the as close to normal as we have in over a week. We have no idea what day my surgery will be scheduled on after my appointment on Thursday, so it feels like we have a lot to get done. We have certainly made some progress. Overall I think we all had a pretty great weekend (except for maybe mom and Steve… but, um, they are still talking to me at least!).
Painting "incident" from Tuesday.
It takes a village to keep Mandi from working on a bathroom it seems. Not that I am complaining that someone else is willing to battle the fight that is concrete backer board. I was told that my task for this evening is to sit on my butt and do nothing, hrm, not working so well. Thus why I am tip tapping on the laptop watching the drama that is backer board. We had to get the thicker stuff because a genius plumber opted to put the toilet stack a bit on the tall side.
Right after we started we ran through two saw blades. Backer board two, Hudson & Co. zero. We called my older brother Justin in pure desperation, we needed something to cut through the backer board of DOOM. 5 minutes after we called Justin and he was on his way over with tools to save the day I got a phone call from Tanner letting me know that there was a big box of tools hiding under our boat in the carport. He had seen the process that was coming and knew our limited tool set. Justin was just moments away when I called him to let him know we had the tools. He at least stopped by and said “hello” before heading back home (we also stole his sawsall, just in case).
Brady’s mom sent him over with a lifetime supply (I may be exaggerating a bit today…) of chili verde and tortillas. After a delicious feast of a dinner fit for a king everyone was back at the bathroom again. Mel was taping, Scott, Mike and Brady were sawing and Mandi was sitting…
Hidden box of goods recovered
Honestly, I think I could handle an end to the emotional roller coaster that is this week. Part of me wants to get this surgery over done ASAP, the other part of me wants to run around and explore the world before I got through surgery and chemo (slow growing cancer right?!?). At other times I am scared to death that it has spread into my body elsewhere. I keep telling myself “one day at a time,” but my brain doesn’t know how to do that.
I was told that the worst part is this “waiting” phase. I hope this is the worst part – I push as hard as I can to be positive, but I lose sometimes. I am sure it is normal, but WOW, this has only just begun. Well, I know I am not alone, there is a village willing to work on the bathroom and keep me from overextending myself.
The boys beating the board into submission.
Me pretending to paint (note how I am in work clothes, not painting clothes)
In less than one week you can lose over 5 pounds! This is a limited time offer… Ok, being somewhat silly. Out of curiosity I stepped on the scale this morning and discovered I have lost 5 pounds in 5 days. What is interesting is that I don’t seem to be eating less, but it could be that I am just eating that much less and that much healthier because my tummy has been in knots all week (the thought of anything deep fried sets me over the edge). Our friends came over and made a roast rack of lamp and lava cakes, so we are definitely eating!
Mike is in the same skinny boat, I think we will be able to put him in those rib showing starving child in Africa commercials here soon (maybe that will help pay the bills!). He can star in that commercial or one of the Utah quitting tobacco commercials – his line can be “I quit smoking the week we found out my wife had cancer, what’s your excuse?” I may get kicked by a few people for that one. That decision was made while we walked out of the hospital with the news fresh on our brains. We really should limit the amount of cancer occurring in our family of two.
For those that I know are extremely concerned about this particular topic: Yes, my father and my older brother will be giving me a blessing before my surgery. For those that hope this life changing event will change my spiritual preferences, no, those aren’t going to change, I promise. I love and respect the wishes of all of my family and friends and their preferences, we all have different ways of coping with what life throws at us. I respect yours, please continue to respect mine.
Dereck has agreed to shave his head when I lose my hair, I think this image clearly demonstrates the deep sacrifice of his luscious locks of hair that he is willing to make for my ego. Mike has offered to do the same, I want Mike to keep his hair, but I am totally making Dereck shave his head because I am a jerk like that.
We are working on bathroom renovations in the evening and keeping ourselves as busy as we can. For those that know me, patience and sitting still aren’t exactly key components of my demeanor.