Merry Christmas

With the holidays approaching, I think it is important to remind ourselves of just how blessed we all are to have loving family and friends. I am so thankful for my husband and our darling son, without them, I don't know what I would do. I am so very thankful for my physical health- I feel great and am enjoying life immensely. Although I want desperately to know that I have more time here, I am so very thankful for the time I have been given. I am very grateful to my program and my mentor for letting me graduate last Friday, it was a wonderful event.

My doctor appointment last week went fine, all my liver and kidney functions were normal! Yesterday I got back my Ca27.29 tumor marker and once again it is elevated, now to an all time high of 109. This is a 13 point increase, so I think it is safe to assume that something is going on, hopefully it is minor. Now that the initial shock has worn off, I am more determined than ever to continue to fight. And when I say fight- I mean fight fear, which is the only crippling disease from which I suffer. I must learn to trust that God is looking out for me and that He has a plan for me too. During this Christmas season, I am reminded of Mary the mother of Jesus, who similarly faced a very serious medical situation, giving birth without modern medicine. In those days, it was not uncommon for women to die in childbirth. I know my doctor will continue to work hard to find the next drug combination and I know my body will work hard to slow the cancer's spread. So please keep us in your prayers this Christmas season. God bless.

In other news, we have moved to our new house! It was a huge job, but we are done and are getting settled in. Parker really likes the additional space and he enjoys running around and playing ball in the basement. We also got our new pool table set up so we are enjoying that. Parker is still obsessed with pool and insists on playing either on his little table or our big table all day long. We are excited to welcome family for Christmas at our house this year, start new traditions and honor old ones.

Lots to be thanful for

Hope everyone had a wonderful Thanksgiving. My Thanksgiving was bittersweet, it being the first holiday without my mother. Nonetheless we had much to be thankful for, family, friends & our health. You may think, health- well your not healthy. Actually I am very healthy even with my cancer, and it could always be much much much worse- so for that I am very thankful.

Doctor's appointment last week went fine, blood work showed some changes in liver enzymes- but still within the normal ranges. Tumor markers, which took a week to get, are basically the same. So it is again bittersweet- but could be much much worse. Last month they were 102, and this month they are down to 96. I was really hopeful that they would fall and I could have more confidence in this therapy, but once again I need to embrace the unknown. It is very very very encouraging that they didn't rise, and the doctor says that he is happy if they stabilize at this level and don't change. So for this I am very very very thankful.

So at the very least, I get another month on this therapy- and can relish in the lack of side effects and can be comforted that the therapy is working. Thanks!

Kristin's homerun tee-shirts

First off, I want to thank my brother-in-law, Chad Schwickerath and sister-in-law, Tammi Schwickerath for all the work they did designing, selling and participating in the breast cancer race in my honor. The tee-shirts are really cool, and I'm excited for Parker to proudly wear his soon! It was really touching to hear all the people who donated money or bought tee-shirts on my behalf. It means alot to me to know that there are people out there, wearing shirts with my name on them, that they are thinking of me, and are praying with me.

I had a most amazing dream the other night, in which my mother told me things would be okay and I got to hug her again, and my God- it felt so real. I like to believe that she is up there in heaven fighting for me too, that she is guiding my doctor's decisions and is beside me every step of the way.

I have my monthly oncologist appointment tomorrow and chemo on Wednesday. Really really anxious about this month's lab work. I have hip and back pain once again that coinsides with the locations of my bone mets. It's not as bad as it was when I was first diagnosed with bone mets, but it definately feels very similar. However on a positive note- it does not hurt to push on it, which makes new bone met activity unlikely. So I am going to cling to that rationale, and pray that it is just achy joints from the Gemzar and Carboplatin, combined with lifting Parker, not sleeping well and not exercising. I also have this new really weird pain in my arm on the mastectomy side. The arm pain is just above the elbow over my triceps and only hurts when pressed but feels fine when I use my arm. I'm thinking that its just tendonitis from carrying Parker with that arm, as the pain is worse after a long day of lifting and carrying him. And oddly it has moved up and down my arm so I'm really thinking it couldn't be a new bone metastasis. Plus with all the lymph nodes they yanked out and the radiation, infection, etc- there has to be a good amount of scar tissue on that side. This is still weird considering this area was not irradiated or touched during surgery.

Also in honor of the Packer's recent victory, here is the next Aaron Rodgers!

Two treatments down

Treatment on Friday went well- no real side effects. The worst was some bone aches that night and some fatigue on Saturday and Sunday. So all together not bad.

Also met with the doctor and discussed my lab work. My routine brain MRI (every six months) was normal and all my liver enzymes were at least alittle better than last month, and all within the normal range. Just got my tumor marker levels back today and they barely increased from last month, to my all time high of 102. This is good news, but not the change I was hoping for. I was secretly hoping they'd fall alot, but its not all that surprising that they increased slightly because it can take a month for the tumor markers to normalize after starting a new therapy. The Dr. said that within the first month it is not unusual for the numbers to jump as many cancer cells are dying and shedding the Muc1 protein into the blood. So maybe next month I will see the huge drop that I was hoping for.

House is coming along nicely- granite counter-tops and sod are in and down. Here are some pictures of the hickory cabinets in the kitchen.

1 treatment down!

Chemo today went better than expected-no reactions and I was able to stay awake for the whole time! Took a little nap when I got home but feel'n good. Thanks to everyone for all your words of encouragement and thanks to Emily, Lindsey and Sabrina for stopping by. And of course thanks to the wonderful staff and nurses at the UI Cancer Center. The pharmacists said to expect some flu like symptoms and maybe some nausea, so altogether- not too bad.
Praying this is THE ONE.

On another note, I've already started my list for Santa this year- I'll settle for stable disease, but a big box of NED would be greatly appreciated.

New game plan

So doctor's appointment was what we expected and not what we feared most. Lungs, Liver and brain were clear and mild progression in the bones- vertebra T9 and more of the pelvis. So now there are 5 spots in the bones. Hard to say how big they are because imagine techniques only indicate bone/cancer activity.

New systemic treatment will include Gemzar and Carboplatin and I will restart Herceptin. TDM1 compassionate use trials just closed, so I won't be able to get that until fall of 2012. Nice thing with the new drugs is they have few side effects, some fatigue and nausea but no hair loss! Plus I can say good bye to the hand and foot syndrome and the lactose intolerance. So hopefully the pounds don't just pile back on after I'd lost some weight (the only perk of my tykerb). No pre-meds, so no prednisone or benadryl on treatment days, so I don't think I'll need to sleep the whole weekend after treatments either.

For those of you interested, I've included a hair update (see picture).

Slight set back

First off let me say that I feel GREAT! I am doing everything I did before cancer (minus working... hee hee hee). No pain, very few side effects and the house is getting siding and drywall!

However... my tumor markers are back to the levels they were when I first heard I had bone mets. They had been climbing for about 3 months and doctor decided it was time to see what was going on. So yesterday I had a PET scan, of course cried during the whole thing. Asked the doctor to not let me know anything until we could meet in person on Tuesday.

He did say that the next therapy would be TDM1, here is a video on the new experimental drug.
http://abclocal.go.com/wls/video?id=...dicate&section

Especially for you walk is tomorrow!

Treatment is going fine and nothing new to report there. I have a doctor's appointment on Wednesday this week so I'm alittle anxious about that. I hope my cancer markers are down (keep your fingers crossed).

For all you researchers out there, I'm planning to ask my oncologist about adding Chloroquine to my chemo regimen. Its normally used in the prevention of malaria, but recent data suggests that when added to anti-Her-2 therapies it can also prevent autophagy. Autophagy is the process by which cells (ie. cancer cells) degrade/eat unnecessary cellular components (organelles, etc) to obtain energy when energy is scarce. So the thought is that cancer cells can use autophagy to survive (hibernate) during chemo treatments, then when conditions are good again and chemo is done, the cancer cells can resume growing normally. I've only read about combining chloroquine with herceptin, so I'll have to ask if he thinks it might work with tykerb.

On an exciting note, the Especially for You Walk is tomorrow in Cedar Rapids. I am eager to see alot of new and old friends and hopefully meet some survivors at stage IV. Walk starts at 8, and we will have heart-shaped balloons tied to our stroller if you want to walk with us. Hope to see you there.

Kristin

Ca27.29 climbing, but is that significant?

Doctor's appointment went fine last Wednesday, he said that my immediate blood tests were good, all back within the normal range. But then today I got back my Ca27.29 results and the numbers once again are climbing. They went from being 99 in May, to 76, 45, then up to 54 and the latest was 68. 68 is still relatively low, I've heard of people with active disease having numbers in the 1000s. Doc said that he'd be more concerned if it was at least doubling over several months- so I shouldn't worry. Well that's easy for you to say.

I hate the fact that I've taken such good care of my body and it has betrayed me. I really really really get annoyed with how society thinks (and I did too) that if you exercise & eat right you won't get cancer. People mistake "healthy" with being physically fit- which is not at all the same thing. Being physically fit does NOT prevent you from getting the flu, or a cold or EVEN CANCER! Besides physical fitness is superficial, and who is to say that they know what is going on inside their bodies by looking at the exterior. I know quite a few women that are very physically fit and they still got cancer. All the craze with exercising, eating vegan or organic foods is lulling society into a false sense of security. It makes you believe that if you do these things you can control your body. WRONG. Just look at the little children who get leukemia or diabetes- is it because they didn't exercise or because their parents didn't serve them organic foods? It is not.

Just like we have no control over which genes are turned on or off in every cell in our body- we can't prevent bad things from happening to seemingly "healthy" people. The bottom line is we are all dying from some chronic disease, just most of us don't know it yet. And there are the occasional individuals that live into their 90s- why, you ask. They are just freaking lucky.

House pictures

Doctor appointment tomorrow, will get blood work and hopefully can schedule a stress test for my heart. I've been concerned about chest pains lately, which sort of radiate throughout my shoulders when I exercise. Its pretty intense, I get short of breath and feel faint. Its probably because I'm so out of shape, but heart disease does run in the family and with all the chemo drugs I've been on I just want the reassurance that I don't have a heart condition. Then once I have that confidence, I'll be back to pushing myself and feel okay when I feel "the burn".

Finally have pictures of the house going up. These are from day 2 and day 3. Super excited. Also wanted to pass along that I, and a bunch of people from my mom's group will be walking the 1 mile Especially for You walk at Mercy Hospital on October 2nd.

And lastly for all you immunology researchers out there- I just met (online) a gal who is going to join a clinical trial for metastatic breast cancer, where they will prime her own Dendritic cells against the Her-2 protein and then reinfuse them into her. I was super excited to see that some of the work we do at the lab bench does translate back to patients- and I feel so proud to have been a part of that. The trial is out East, so I won't be joining the study, but I can't wait to hear the results. Oh and one more fun fact- if your looking for the next grant/fellowship to write, consider metastatic breast cancer. The vast majority of breast cancer research is directed at the initial treatment and/or the etiology of the disease. Very little actually focuses on the metastatic disease which accounts for all breast cancer deaths. So its a under-researched area, FYI.

House updates

We've broken ground! Our address will be 200 Colton Drive, North Liberty. Contract says we should be in by Dec 16th- what a great early Christmas present.

Other than that, I am feeling good. I had a big scare when I noticed new pains around my incision sites and in my ribs on that side. Went to the Radiation Oncologist and she said that it didn't feel like a new recurrence. A new recurrence should hurt with deep breaths and these do not. So with that vote of confidence I've gotten hopeful once again for a normal life. Every good day, I get hopeful for "a cure", and then I get all excited about the prospect of another baby. I then have to remind myself just to be thankful, and not push it. This cycle repeats itself every few days.

And in reality I could stop my treatments when ever I wanted and try to conceive. But the issue would be that if my cancer started growing again or spread to more sites, I would not be able to receive chemo while pregnant. In addition, whole body imaging to monitor for cancer growth is dangerous to the unborn baby- it is a large dose of radiation. While I was in the hospital for my cellulitis infection- the nurse told me of a patient whose cancer recurred while pregnant, she refused chemo- as it would kill the baby. And although she was able to bring the baby to term, her brain was so full of metastases by that time that she died within a few weeks of her C-section. Obviously, I would hate to abort a child but not being there for Parker and Patrick would be worse. So I think I will avoid ever having to make that decision.

But at least we have options, perhaps we could adopt or use a surrogate. Of course all this depends on whether I can get to "no evidence of disease" (NED) stage, or in my doctor's words, a homerun. So one thing at a time and one day at a time. But in the meantime, I still plan to dream of a totally normal life.

Also just celebrated (if you can say that) my 1 year caniversary of the original diagnosis. What a hellish year- grandma dies, mother dies, dx cancer, cancer recurs before treatment even ends. I like to think that no year could ever be worse that this one, so I must have some good years ahead. :)

Second Guessing

Well despite the good doctor's appointment, my ca27.29 number was up from 45 to 54. 9 points- do I really believe that is significant? Especially when the liver enzymes were good (?) I spent at least 1 whole day sure my cancer was spreading while on vacation. My back hurt, of course this was after waterskiing, but I still thought it was cancer. Then I came down with the stomach flu- up all night in the bathroom. So I was all worried the cancer was in my liver or something and making me sick. Parker got the same bug 2 days later, so the worry that it was liver cancer or something has subsided.

But I still worry. There are a few spots on my chest that are painful to the touch- granted these were surgery and radiation sites so maybe its just tissue inflammation. Dr. still plans to stay the course on the Xeloda and Tykerb, we will get a scan in a few months. And his nurse said that in some women the numbers can fluctuate a bit and they can be up one month and down the next. Sounded like as long as they don't stay in a constant upward climb- we're good. Fingers crossed. Meeting with the radiation oncologist this week- hopeful that she says the pain to the radiation sites is normal.

Cancer is not like any other disease- it is so unpredictable. What works for one person may not work for the next person.

Everything is quiet for now

Great doctor's appointment yesterday. Blood work was looking better, liver enzymes getting closer to normal, and in a few days we'll have the results of the ca27.29 blood test. Doc said that in 2-3 months we'll repeat the PET scan and see how the bone mets have responded. I'm trying not to get my hopes up.... but things are looking really positive. I discussed with him the idea of oligometastases and he said we won't know if that's my situation for 5-10 years. I'm embracing this notion because it suggests that metastasis proceeds in a step wise fashion so that it can be caught or stopped at intermediate stages before it become systemic and more difficult to treat.

I'm also excited because he said that down the road, if I can stay NED, we can drop one of the drugs and maybe even someday (years down the road), I could even drop the other one. I'd be totally off chemo!!!! This has my heart pounding really hard because it could mean a normal life again and maybe even a second child! Don't get me wrong, life right now is really great and my side effects are not a big deal at all (right now). But for the meantime, I'm not pushing my luck and I'm just so thankful to be here and more or less healthy.

Interestingly the doctor even said that he'd like me to "get a job", I was totally confused. Apparently he thinks that it'd be healthy for me to interact with some adults in a professional manner outside the home. He really wants me to get back to as close to normal as possible. Well, little does he know that I'd don't want the old normal.... I want a new and improved normal. Plus I really love being home, I'm super crafty and love coming up with new projects and activities with Parker. Plus I do get out and socialize with other moms.

We're headed for vacation on Friday. One whole week of R and R at Lake Redstone in WI with some of our friends. Can't wait- doc even gave me his blessing to do some waterskiing and yes have a couple beers! Heee heee

Loving LIFE!

Another cycle down! Kristin-1, Cancer-0

Just finished another cycle of Xeloda and so far my hands and feet are not sore! Maybe it is the fact that I didn't spend alot of time on them, or maybe the slightly lower dose has helped. Either way it is a major victory for me and my quality of life. Although they don't hurt, I have never seen my feet peel like they are now. Another major break-through, turns out I have become lactose intolerant, so cutting milk out of my diet has dramatically helped with my GI issues. So no ice cream for now, but its worth it.
On another note, my hair will be due for a trim soon! And it is finally long enough for a clip or bobby pin. In other news, our house plans are coming along, working on a lot of paperwork this week, and then we're taking a week off to spend some time with friends at my Dad's cabin on the lake in WI. Family is good, Parker is now running and climbing- yikes. Thanks for all your well wishes and please send me your updates sometime.

I love you Ca 27.29!

Great news- the Tykerb rash and the Hand/Foot syndrome is all cleared up for this cycle, hello 2 weeks of feeling great!!! On another note, just got the numbers back for my blood work, and sorry to say.... ummm... Mr. Cancer.....you are dying. What started out at 99, then 76 is now a tiny little 45! Normal is considered under 40, but don't get too excited yet, I will be on these drugs for a long time yet. My alk. phosphatase levels are looking better now too, which would back up the decrease in Ca 27.29. Oddly, my eosinophils are elevated- not sure what's up with that, maybe related to the rash??
Doctor's appointment today, sore throat, probably thrush from all the chemo drugs. Good times ahead!

Side effect blues

So our trip to Pittsburgh was great! We really enjoyed seeing the sights and visiting with friends. And although I made frequent trips to the restroom, I didn't let it ruin our vacation. Eating out everyday really didn't help my digestive system either, so I was happy to be home and have some home-cooking.

Just when I finished the 14 day Xeloda cycle, the hand and foot syndrome popped back up, and it was much worse than the last cycle. Now I can barely stand on my feet without hurting, my hands are much better, but any pressure or heat on my feet makes me cringe. Plus I have the added perk of a rash all over my body from the Tykerb- grrrrrr. So I am taking a break from the Tykerb for 5 days to allow my body to recover and get back to normal, and I've been off the Xeloda for 3 days now, so my hands and feet should get better real soon. Thankfully, all these things popped up after we got back, so I am able to sit around home, ice my feet and slather myself with anti-itch lotions. Within a day of stopping the Tykerb, my stomach settled down. At the same time, I started the BRAT diet- bananas, rice, applesauce and toast- which probably helps some too.

Off all the negatives of treatment, I have found a few positives- first my short hairstyle is super quick and cute, and second- I have no appetite so I don't overeat and I can easily skip a meal and not feel hungry for days. I'm trying to eat healthy nonetheless. After getting the stitches out of my chest, I am now totally pain free on that side and finally can sleep on my left side again. It'd been months since I'd done that. So all in all, not too bad! Doctor appointment tomorrow, looking forward to some good news with blood tests and hopefully some more suggestions for managing the side effects better. Chao!

Seriously, its just a piece of silicone

After several very frustrating conversations with my insurance company, I finally got them to approve a gap extension to allow me to get a breast prosthesis. I was almost in tears when they said no your insurance doesn't cover this and that. Not that we couldn't afford to pay out of pocket, I just wanted it to go smoothly. Plus by law, they need to pay for some portion of these services, just like they paid for the implant surgery.

Looking back, I think they thought I was lying on the phone to try and get some lingerie or something. I realize I changed my story a few times, first saying that I had a mastectomy back in Feb (which is true), and then saying that I had surgery a few weeks ago (also true), plus I couldn't remember any of the specific dates for the surgeries. I also was irritated that they insisted on speaking to my doctor- I was like I have the prescription, why isn't that enough? I was not sure that my surgeon would have time to talk to my insurance company, he's already done so much for me, I didn't want to annoy him more. I also insisted on speaking to the supervisor, because every person I talked to told me a different story- like oh yeah those are covered, or no that is out of network and you can't apply for a gap extension with your plan. Or oh, you need a prescription for the bras too. I was like WTF, and I broke down crying on the phone- all I want is to look normal, is that so hard? You paid for my $$$ reconstruction surgery without so much of a peep, and now your being all difficult for a couple hundred dollar piece of silicone and a few bras? Seriously?

I assumed they had access to my medical file, like the procedures I'd had- aka mastectomy, but now I realize that they didn't and they had to go on what I said over the phone. Finally I had my doctor's nurse call them and explain the situation. When the insurance company called me back it was like 180 degree difference, they were so nice and helpful, and assured me that I would be able to get the gap extension and that the out of network "boob supplier", Fittings Unlimited would be considered in-network and be covered in full.

Other than that, we're working on putting our house on the market, so we can build our dream home in North Liberty!!! We are so excited. Although we LOVE our current home, and will dearly miss all the plants we planted in the yard- this house just doesn't have alot of storage and it has no storm shelter. With all the thunderstorms, hail and tornadoes- we really want a true basement that is underground. The Realtor is coming tonight to look at our house- hopefully he'll be impressed, and it will sell quickly.

Some encouragement

Well, after getting my infected implant out, I am once again starting to feel like myself again. Able to keep up with Parker, Dasher and our birdies as well as a houseful of laundry, cooking and cleaning. I love it. My energy is returning and I have lots that I want to do.

I worked up the courage to look at my lab results- specifically a blood cancer antigen test, ca2729. Shortly after my stage IV diagnosis, the value was 99, but just last week it was 76! So that plus the absence of pain in my back would suggest that the Xeloda + Tykerb is working!!!

What a vote of confidence- I feel like I may actually get more time than I expected. I know the doc said that a homerun (aka "remission") was a possibility, but I didn't really expect that could happen. So I have lots to be thankful for and I'm more hopeful than ever. I was so thrilled by this prospect that I actually had a dentist appointment, thinking- well I might stick around awhile. Hell, I might even start planning some vacations for next year too.

Although the value is still not normal (under 40 is normal), and it would need to continue to decrease for assurance of a physiological response to treatment- I am still celebrating. Little victories count at this stage of the game.

Met with the radiation oncologist this morning, she was happy with the appearance of the skin, but concerned about swelling and some fluid collection in the axilla. So maybe down the road, we will try and drain those areas. But thankfully, I have nothing artificial in my body anymore so nothing can get infected! Still on antibiotics of course.

Parker is doing great- consistently eating yogert with a spoon, but look out, its a messy process. Its also more dipping that scooping at this point. I've included a bunch of pictures, some from golfing and some from Parker's meal times.

Another great week, and feeling pretty good. I'm having a surgical procedure today to remove my deflated implant. I will be awake for it so I won't need to stay in the hospital or anything. I had a great father's day with Patrick yesterday, we went golfing at the Amana golf course, we played best ball so our score was actually not too terrible for only my third time golfing. I even managed on the last hole to get it in the whole from 30 yards with the putter. I was so excited. Due to the Xeloda, I needed to wear golfing gloves or else my hands would have been torn to shreds.

Although I am very optimistic and hopeful for a "home-run", I feel like some people don't understand just how deadly cancer at this stage is. I hate to admit this, but the longest my doctor has seen someone with my stage of disease live is only 7 years. I don't want to be cruel to all my friends and family out there, but I also want to prepare you all. Statistically speaking at this stage, the median survival is only 2 years. This is just the median, and there is a long tail of people who have lived 20 or more years with the disease. I am already taking drugs that can immediately have severe cardiac complications as well as numerous unknown long term side effects from use.

Its still so odd to me, considering I actually wanted to study cancer, and contribute to the scientific community. I really found cancer a important area of study, but never thought my life would depend on it. I feel so fortunate to be alive today, because had I not started chemo when I did (the first time in August 2010)or had it not responded to my therapy, I'd probably already be dead. My tumor was huge then almost the size of a lemon, and still my doctor was telling me that it was probably from nursing Parker. As a favor to me, please if you notice something in your breasts- that is not present in the other breast- get a biopsy. Screw statistics, screw doctor's advice, pay for it now if insurance won't cover it. Don't trust mammograms or ultrasounds- they don't work in young women, our breast tissue is too dense. Be especially aggressive if there are calcifications on mammo, don't wait.

The following video I got from a friend, she's the first gal on the video, and it really hit home for me. She's lived with stage 4 for 4 years now, and she like me, has a young son.

Paste into your browser, then click in the open space on the screen to view;

http://www.onetruemedia.com/shared?p=9b632b1fc19fcaeee313a4&skin_id=1901&utm_source=otm&utm_medium=text_url

Good Days

We had a great time at the zoo and can't wait for our next adventure. Unfortunately the side effects of Xeloda took alittle fun out of the get away-but not entirely. There are now 2 noticeable blisters on my feet which are a very odd side effect of the chemo, and then my hands have some very dry areas that are peeling. But with enough lotion, they're not too painful. Started a new anti-diarrhea drug, seams to be helping. Don't really want to decrease my dose of Xeloda because of the side effects because I want to get the most out of these drugs and shrink my tumors.

Meeting with the doctors on Friday, both the oncologist and the surgeon- hopefully they'll have some good news- i.e. the chemo is working as the blood cancer markers are decreasing and the implant looks good and we won't need to take it out yet.

Had a terrible dream last night, that my cancer was back full steam- and it was spreading faster than doctors could target it. I had lost my hair again and was preparing for the end- I was so relieved when I woke up. Good reminder that things can always be worse.

Enjoying life

After a great day with Parker, I'm starting to feel more comfortable staying home. At first I worried that I was not exciting enough for Parker, and that he needed more child-child interaction- but I think we've adjusted and are doing well now.

He's napping well again and doing better with his separation anxiety- Now he only screams momentarily when I go into the other room. He is so smart, he knows the names of his toys, and will play fetch with the dog even. Not quite running just yet, but getting faster with is little legs every day. Trying to encourage him not to torture the dog is my next challenge.

Doctor's appointment tomorrow, meeting with the plastic surgeon again to see how the infection is clearing up. My guess is he will try to drain the excess fluid again. Took last dose of Xeloda for this month- Thank God. The side effects were really starting to get bad, no hand and foot syndrome yet, but that takes time. I'll probably back off on the dose of Xeloda to try and avoid these nasty side effects in the next cycle. Doc says the goal is to stay on the drug long term, so its really important to establish a dose that is tolerable basically forever.

Excited to go to the Omaha zoo this weekend, hopefully the weather cooperates and it does not get too hot. Got some good sunscreen for the Buddy boy (and me), and I think we'll have a great time.

Thinking about attending a metastatic breast cancer retreat in Nov in the Dells- convenient huh? I've heard good things about it and hopefully I can get some good life skills and make some friends. That's about it for now! I'll probably post again next week.

I've also included some pictures from Lake Redstone last week.

Denied social security disability

Grrrr, as if we as graduate students go unappreciated, are paid poorly, offered almost no benefits and have to work odd long hours we are also not able to get social security disability.
And I understand, yeah we don't pay social security, so yes, we don't "earn it" but seriously I was never given the choice to pay it.

Being a graduate student for 7 years now, I have never had more than a temporary job (summer jobs during college), and so I haven't paid in enough credits to qualify. I can just imagine had Patrick and I never met, I'd be graduating from grad school- no chance of ever getting life insurance, barely able to afford my treatments- even with the UI grad. care health insurance, and be living alone with no hope of ever having a family. I'm so thankful I found Patrick, he is so supportive and is allowing me to stay at home with our little angel.
I guess things aren't as bleak as they could be.

A new normal

After a great weekend visiting my dad, sisters and Lake Redstone we're back to our new normal. Cellulitis is clearing up slowly and the pain is getting less. Chemo is going really well as far as I know (hopefully its doing something). I do notice alot more fatigue with any aerobic activity, ie chasing the dog who thinks the world is his to explore. I almost fainted after I ran him down, and it took awhile to get the world to stop spinning and for me to feel good on my feet. Don't know if that was post-surgery exhaustion, chemo & dehydration or me being so badly out of shape.

Going home wasn't as hard as I worried it would be, although mom was always on my mind, I only broke down crying once. Planning a trip to the Omaha zoo this weekend, so this will be Parker's first experience with a zoo- I can't wait. I may be pretty overly protective and clingy with him there, but he's my only child and I have a right to be. Just hope that the grandparents understand and don't fight me for him. Parker loves his birdies (our two cockatiels) so I know he's going to be interested in the larger versions- penguins and flamingos.

Living with Stage IV cancer

After a full day of recovery at home, today I'm back to almost full speed. I spent the day spoiling Parker, we went to the library, mall play area, and then enjoyed some chinese food together. So far, the chemo drugs have been nothing, Yeah, its alot of pills to take and specific instructions for taking them, but really no side effects- I am so relieved. Now I just hope their doing their job.

I still have some pain in my back, but I think that's muscular now, from chasing Parker around. God I hope so. Either way, this pain is in a different place than the original bone metastases and it is on both sides. In a few weeks I'll get to go into the oncologist and the blood work should give us some clues as to how the therapy is working.

One thing I'm still struggling with is the idea that I can't have any more children. I'd always wanted to have a little girl. I saved alot of cherished dolls and other girly things from my childhood, and always assumed that I'd pass those on to my little one. There is the possibility of having a surrogate carry our baby, although I'm not sure that is responsible considering I have a terminal illness. If we can get these mets to shrink and disappear, we might think about that further, but for now-its a no go. Plus having a surrogate would be very expensive and challenging.

I've read blogs from other women who also were diagnosed with stage IV breast cancer, and they never had any children, so I should be thankful. On that note, I want to really spend alot of time with Parker, teach him as much as I can, support and love him (while I can). No one can steal today from me. And who knows, if we can't have more children, maybe we can travel more and build that dream house sooner.

Chilling at home

Yesterday afternoon with little warning, my plastic surgeon showed up at my room with a wheelchair and kidnapped me. We went to a little procedure room next to his office and he did his best to treat the infection and save my implant. Meanwhile, all my nurses and some resident docs were wondering where the heck I was.

Although the cosmetic result is not attractive, I'm really happy with everything. I got to go home shortly after and am on oral antibiotics now. It wasn't really a surgery because I was awake, but I can totally understand why usually people are put under. It was quite a sight to see. So basically I get to wait at home and see if 1) the infection clears up or 2) infection gets worse. I'll be headed back in on Friday for a follow-up. I really appreciated his willingness to work me into his schedule and his flexibility. Thanks Dr. Lawrence.

Surgery or no surgery- that is the question.

Hopefully tomorrow when Dr Lawrence returns to round on me they'll decide that I either go home (hurray) or have surgery (okay). I'm going crazy here, all I think about is the cancer and how it is ruining my life. I think about my husband and son at home and I so want to be there with them and not here watching t.v. by myself.

Lately, I've gotten really annoyed with people that don't take care of themselves. People who eat poorly, are overweight, ignore doctor's orders, don't exercise and yet they don't get cancer! WTF, I took care of myself, I exercised, did everything right with my health- I told my doctor many times that the lump was there! Not that anyone deserves cancer, but seriously WHY ME? People you need to be responsible for your own health- if something does not seem right, do something! And please- don't complain to me about your problems.

Thanks for listening- sorry its not more positive.

Antibiotics not cutting it

So I've been receiving i.v. antibiotics every 12 hours and they haven't really showed efficacy. The doctor's think that its 99% likely that the implant will need to come out. My plastic surgeon won't be back from Kansas until Tuesday, so sometime thereafter would be the soonest we could plan that surgery. Sadly, they won't be able to put a new implant in for a few months, so in the meantime- I maybe pretty deflated.

I found website for women who'd been 10+ years living with metastatic breast cancer, and there is a common theme for these women- they are usually young (like me), they have limited metastatic disease (I only have 2 bone mets) and they respond well to chemo drugs (I've never gotten sick from any of my drugs). So I'm really optimistic that I fit into that category and I can be around for some time before the disease progresses significantly.

On a side note, my thesis committee has decided to allow me to graduate without writing a lengthy thesis! I've met all the requirements- I passed comps, I have a primary research paper, and a review. That is such a relief, because I have about 1 month of work to do on my thesis and then I would need to prepare for the oral presentation. Although a month isn't very long, for me its an eternity and I can't afford to spend that time working on a degree I'll never use. I'm hoping that my science career isn't over, but it looks like it may be. Time will tell. Either way, family is my priority now.

Weekend in the hospital

Minor issue (relatively speaking), woke up this morning with pain in my breast implant. Wanted to brush it off, but the redness and warmth suggested it could be something serious. Made a visit to the ER this morning and they admitted me for an infection. So I'm on i.v. antibiotics for cellulitis, and hoping that I can keep the implant. How bad would it suck to have to get this implant (tissue expander) removed after all this and then to have to get another one later. It was super painful the first time around, I'm not sure I'd have the courage to go through that again.

So here I am on the cancer floor watching Sex and the City reruns. But at least this isn't life-threatening and the worst that could happen is I'd loose a boob. I still get pretty grumpy when people complain about their problems, I'd like them to know what I'm going through. I figure that if God can just help me get through this, that I'll listen to everyone else complain about their problems and not roll my eyes.

Chemo is on the way!

Just got word that my first shipment of Tykerb is on its way and I should be able to start treatments before the weekend! The other drugs I will be taking are Xgeva (shot every month) and then Xeloda. The side effects are not supposed to be too bad, some rashes and sores on the palms of hands and feet.

I've gotten in touch with Imerman Angels and was introduced to a gal in a very similar situation as me, but she's 4 years into it. What a relief to know that I'm not alone. She's given me alot of hope that I will be able to stay at home and take care of Parker despite treatments and side effects. She made the comment that fighting metastatic cancer is like a chess game- cancer makes a move, then our doctors re-evaluate their strategy and make their move. Can't wait till we get this cancer in check or better yet check-mate!

My doctor said that a few individuals with a similar diagnosis have responded so well to treatments, that they zapped their residual bone spots with radiation and then eventually stopped treatment altogether! He referred to that response as a home-run, very cautious to use the word cure. But call it what you want, wouldn't that be amazing! Those individuals are still monitored very heavily and the cancer could pop back up at anytime, but what a thought!

Looking forward to doing some lite traveling this summer, we are going to Omaha in a few weeks, Pittsburgh in July, and in August we'll spend some time in Wisconsin Dells (only 20 minutes from where I grew up). Don't want to travel too far yet, as Parker isn't keen on being cooped up in a car or plan for that long.

Long story short

So to make a long story short-6 weeks after Parker was born- I discovered I had a lump in my breast. Told doc many times, but she brushed it off as I had an ultrasound on that breast during pregnancy (thought there was something then too). My doctor told me it was probably a plugged milk duct, so massage it and use a hot pack for 15 min several times a day. Plus I have no family history, no cancer in the family at all, I don't smoke and I exercise regularly- so cancer was NOT on my radar. Well, nothing I tried caused the lump to shrink. The doctor said, if it doesn't get better by the weekend, take these antibiotics. Well it didn't progress to mastitis and the lump didn't go away by that weekend. It continued to get larger and I continued to mention it at all doctor's appointments, even at Parker's well child visits. Finally fed up with a lump the size of A LEMON- I insisted that I have more imaging done. Granted I had a clean ultrasound on that breast only 6 months earlier. For those of you without experience with breast tumors, it was only noticeable by feeling the breast- it was a hard area in the corner. Despite the size of the lump, my breast was still totally normal sized and producing plenty of milk for my little one.

August 29th, I went to University Hospitals and Clinics Breast Clinic and had ultrasound and mammogram. The ultrasound saw NOTHING, they almost sent me home! I suggested that they do more imaging as I really wanted to have some answers that day. Having a mammo while lactating is NOT fun- and it was very uncomfortable. The mammogram saw lots and lots of calcifications all throughout the breast but no obvious tumor or mass where the lump was. Little did I know that calcifications are a red flag for cancer. They took me into a little office, handed me a box of tissues and said, it's not good. They said that it was probably cancer and they would need to move fast to determine the type and extent of disease. I called Patrick and he joined me at the hospital where I spent several more hours getting core biopsies and needle aspirates of the mass and an enlarged lymph node. My world fell apart, I was terrified and had to wait an agonizing 3 days to get the pathology report and decide our plan of action.

The very next week I found myself in an oncologist's office with my father, sister, husband, son and my very sick mother (in a wheelchair nonetheless) waiting to get any shred of good news we could. Turned out it was not responsive to female hormones (ER/PR-), it was of the very aggressive Her-2 subtype, and it was present in the enlarged lymph node. Doctor felt confident that it would not be elsewhere in my body, so we did not do whole body imaging to look for metastatic spread. In sum, I was stage IIIb or IIIc. There is only one stage beyond III, and that is IV.

That same day, I started the first of my 4 rounds of neoaduvant chemotherapy regimen, 5' Fluorouracil, Epirubicin and Cyclophosphamide (FEC), with herceptin. After those 4, 3 week cycles, I would have 10 cycles of Paclitaxol and continue herceptin. Chemo wasn't that bad for me. The first night I was so hyper because of the pre-meds (prednisone) that I couldn't sleep, and it wasn't uncommon in the weeks to follow for me to go jogging the same day as chemo. Never suffered nausea or neuropathies (loss of feeling in extremities), although had my fair share of GI issues.

In Feb, 2010 I had my surgery- which included a left masectomy and complete lymph node dissection followed by immediate reconstruction. The plastic surgeon used a skin sparing technique so that I would have minimal future surgeries. All the while I was still on herceptin. After surgery, the pathology report came back and I had 4/12+ lymph nodes, ie. the cancer was still there, but thankfully they'd removed all lymph nodes they could see. The primary breast tumor however had a complete response and all remaining cancer there was DCIS (a non invasive stage I form of cancer).

Because I had several + lymph nodes I still needed radiation to increase my chances of a recurrence free future. I had radiation to my reconstructed breast, the arm pit as well as the chest wall. It was very uncomfortable- and was much more painful that I expected. Radiation burns feel like a sun burn that goes all the way through your body. I pealed several times and my scar never fully healed up. I had noticed on my last treatment day that my back was really starting to hurt, but chalked it up to stress, picking up Parker and lack of exercise. While all this was going on, my own mother lost her battle with amyloidosis and was laid to rest the day before mother's day in 2010. I was heart broken but knew she'd suffered long enough.

On a follow-up visit with the Rad. Oncologist I mentioned the back pain (it was now so bad that I limped) and she suggested we get a bone scan- just in case. I had tried to massage it out, heat, ice, I even tried jogging (which hurt so bad I almost cried). While in the lab, working on scheduling my PhD defense date, I got a call from the Rad. Oncologist and she said it wasn't good news. There were two spots of metastatic disease in my bones (a vertebra and my pelvis) right over where I had the terrible back pain. Holy Crap, I was still on Herceptin for 3 more months! How could it come back before I'd even finished therapy! I had read such wonderful things about Herceptin, how could it fail me?

PET and CT scans revealed that (thankfully) my lungs, liver and brain were cancer-free. That minor victory gave me hope. Although such imaging can't detect micro-metastases which could be everywhere and anywhere in my body. So I am very cautious. I have started monthly Xgeva (a antibody to RANKL) to strengthen my bones, and hopefully Tuesday next week I will get to start the new chemo cocktail my doctor selected. The pain is worst in the morning and night, but it responds well to advil.

I am taking a medical leave of absence from graduate school, to spend time raising Parker. Unfortunately, we will not be able to expand our family due to my health, so I want to cherish every moment I have with our little man. He is 1 year old now.

I have no idea what I will do career-wise, at this point- I just don't care. The irony is painful. During undergrad. I worked alongside a graduate student studying skin cancer and the initiation, promotion and progression of cancer. Then when I came to Iowa, I always thought I'd end up studying cancer, not be fighting it.