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.