October 31: A Day Of Thanks

Thank you for spending October with me. As the Breast Cancer Awareness Month comes to a close, so does this run of Pinktober postings of Metastatic Advocacy. I am still an Advocate, and I will still post about Metastatic issues, but this month was a special project. As October ends and we're about to enter November, which holds the American holiday of Thanksgiving, I'd like to give thanks to certain people.

Thank you, to my readers, who are helping me make this blog into something that inspires and motivates me.

Thank you to my parents. Dad and Mom, I wouldn't be where I am without your love and support, both emotional and financial. Thank you for everything you've selflessly done for me. I love you.

Jennifer & Susanne.
Photo taken by Marla Austin Photography

Thank you to Jen, the love of my life. You are brilliant and amazing, and a bright source of joy to me. I count myself blessed every day that I have your love. Thank you for always standing by me, for supporting me, for taking care of me when I need it. You are my darling, my everything, my forever, and my wife. I love you now and always.

Thank you to Dr. Steven Dunder, my oncologist. You have shown me the patience of Job when I was still blinded from all the pinkwashing and in denial about my diagnosis, and you have proven to be good to your word, fighting this disease alongside me with as much passion and determination as I am. It was chance that I ended up with you for my oncologist, but a very lucky chance. You're a solid partner in this battle and I'm grateful for everything you've done.

Thank you to the nurses and staff at the Southeast Nebraska Cancer Center. You all actually succeeded in making me feel at home and welcome, in a cancer center of all places, with being recognized and called by name when I approach the reception desk, to the phlebotomists and their patience with my sometimes-stubborn port, to the radiology techs who give me my CT scans and plenty of sympathy when the contrast injection makes me sick, to the nurses in the exam area and in infusion who are always ready to answer questions and talk a little bit about life in general, seeing each and every one of us as a human being, and not just a patient. Thank you for all that you do.

Thank you to the "midlevel providers" at SNCC. You guys are top-level providers in my opinion. The care and treatment you give us is above and beyond excellent. Thank you for taking care of me.

Thank you to Bronson Riley, for being such a wonderful Genetic Counselor. You have patience and passion and a remarkable ability to explain genetics to the rest of us. Thank you for walking me through the process of getting tested for the BRCA mutation.

Thank you to Catherine Verplank, my oncology nurse navigator. You are a pleasure to work with and are always just an email away if I need you. Thank you for all that you do.

Thank you to my friends, old and dear, who have stood by me as the news of my diagnosis broke, and offered all the support you could. Thank you for being there, and for still being here as my friend. Thank you for crying with me, for laughing with me, for helping me come up with enough posts to fill this month, and for being just generally awesome.

Thank you to my new friends, my sisters and brothers united against this horrible beast, for giving me a safe space to vent and an understanding ear to listen, letting me know I'm not alone in feeling the way I do. Thank you for your support and encouragement, and for the inspiration you give me.

October 24: Guest Blogger Jennifer Kraus-Dahlgren - Part 2

See October 23rd for Part 1 of Jennifer's guest post on metastatic breast cancer, and what it's like as the partner and caretaker of someone living with MBC.

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I remember that she started receiving care packages very shortly after that. Friends and family of hers stepped up and sent her little things, a card, some money, ginger-based products to stave off the normal nausea that'd come with chemo. Little things to brighten her day. I was almost never sent anything. I was rarely even mentioned as being kept in thoughts, prayers, hopes. Everything was about her. And it should've been, as far as I was concerned. She was the one that was ill. She was the one that needed to fight. She was the one that was loved.

But I started to feel forgotten. I was the one that'd help her get to a trash can or the toilet in time when the nausea hit. I was going to be the one carrying things for her, doing shopping and laundry largely by myself as chemo progressed and she started losing her strength. I was the one that'd have to go through her belongings and decide what to let go of, as if I were letting go of parts of her. I was the one that was going to stand at that grave as the grieving widow.

I never begrudged her the attention. She needed it. She was the one that was ill. And she never forgot me. She held me every day. She reassured me every time she saw me crying that she would beat this, that she wasn't leaving me. But she was the only one. Nobody else even talked to me about it. No one asked how I was doing, if maybe I needed a hug, or a day out to get away from the appointments and the material things I'd have to sort through, the things that I looked at every day and thought who they should go to.

I was braced to be alone, and in so many ways, I was already alone.

My reality had changed, and I didn't want to live there anymore. I desperately wished I could close my eyes, wiggle my nose, and tap my heels together and everything would change back to how they were. Back to her being able to work, to a time when our excursions out of the apartment could be for something silly, before the doctor appointments and chemo took over. Suddenly, leaving the apartment meant leaving my little bubble of denial, it meant looking Death in the face and begging her not to take the woman I loved. Begging for her to be spared. For more time.

I keep hearing stories of people who leave their wives and girlfriends after a Stage IV diagnosis. Leaving when that woman needed them the most. In some ways, I can't blame them. It's terrifying, to watch someone you love slowly die. Being a caretaker can be one of the most thankless jobs in the world. The only one who really seems to get that is the patient herself. It hurts when the people around you ask your wife "how are you doing?" but don't even give a nod to your own pain. I can't say that I blame someone for walking out on that.

But I couldn't personally fathom it. I couldn't imagine Susanne having to go through those treatments alone, having to someday lie in a bed and pass away without the woman she loved holding her hand. I knew what it was like to be alone when you needed someone the most, I loved Susanne too much to be able to do that to her. To even let it cross my mind.

But being a caretaker is a thankless job. Nobody else seems to see how hard the caretaker has it. Nobody but those of us who have been there know what it's like to watch someone die. To watch their time slip away, knowing that there will never, ever be enough time left.

That was the reality I had stepped into with that phone call, late in November. It was a reality I hated. All the dreams we had, the ones we'd been able to continue to hang onto, even after our lives had already been irreversibly changed, they were gone. Time was working against us, suddenly. That black, ugly void where nothing makes sense and everything hurts yanked the rug out from under our feet. That was my new reality.

Just a month before had been Pinktober, with its messages of hope, of cures. Like so many other people, it'd fooled me into thinking that breast cancer was beatable, that it didn't kill people. They told us to hope. They told us to pray, they told us to feel bad when we didn't detect it early, as if it was the patient's fault that her cancer hadn't been diagnosed until too late.

Our dreams were gone. Her career, her chance at becoming a nurse, everything. It was all gone. All that was left for us was doctors and illnesses and an inevitable separation. Behind us, all those pasts, all those what ifs, shoulda coulda wouldas, they were gone. They were torn. They were vandalized and ripped and torn and taken from us and left behind as nothing but a future that we could no longer look for.

My reality had changed. And all I could think that it was my fault. If I'd only gotten her in earlier, if I'd only outstubborned her, maybe we could've caught it before it became Stage IV, could've beaten it. Could've had that hope. If I lost her, I had nobody to blame but myself. That if she died, it was my fault. Not getting her in early had been me giving her a death sentence.

One day, I will be looking up at the urn on my shelf and have to apologize because I'd failed her in the one thing I was supposed to do. One day, I'll be saying "I miss you, I love you, please come back." One day, my own life will be over, and I'll be left behind again.

But I try not to think of that day. It'll come, in the meantime, the best thing I can do is hold onto each and every precious second, to keep taking care of her, to keep loving her. That's all anyone can ever do. Hold on and love.

Hold on and love.

October 23: Guest Blogger Jennifer Kraus-Dahlgren - Part 1

You, gentle readers, have met Jennifer before, as Jen in my previous entries. I asked my wife to pen a guest post on metastatic breast cancer, and what it's like to be the caretaker and partner of someone living with MBC.

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The Life of a Caretaker

By the cold and religious we were taken in hand,
Shown how to feel good and told to feel bad.
Tongue-tied and terrified we learned how to pray.
Now our feelings run deep and cold as the clay.
And strung out behind us, the banners and flags,
Of our possible pasts lie in tatters and rags.
-Pink Floyd

I remember the moment we received the news very clearly. I can't remember what the date was, not even what day of the week it was, beyond not a weekend. Susanne knows, but I don't. It was November, the stores already had Christmas decorations up and cards and gifts and music was playing. The season of giving. The season of brightness and light and for some, a holy season. A season of gifts.

I'd known, the first time I felt that lump in her breast, that it was cancer. Something deep inside me knew. She insisted it was a cyst, she'd had one exactly like it on the other side, and it'd burst and drained, just like she expected this one to. I knew better. But I let her prove me wrong. I dismissed my concerns as paranoia. I grew up in a family full of life-threatening and/or chronic illnesses, I was always ready to expect the worst when something was not right with someone I loved.

But she showed no other symptoms of cancer, and she was too young. So I let her confidence keep me floating along.

But I knew.

I finally got her to agree to go see the gynecologist I'd been seeing for my birth control for a basic evaluation. The place was mostly donation-run, so we could afford it. They referred her to a doctor here in town to have it biopsied, or drained, if it was a cyst, as Susanne thought. I sat there in the procedure room with Susanne and the doctor, looking away because I get squeamish about medical procedures, but I was there. I heard the doctor announce that it was solid, not a cyst.

The word cancer loomed in front of me. I knew. It was there for two years, and I knew every day and night of those two years. But there was the chance that it wasn't malignant, maybe just fibrosis, nothing to worry about, something that could be removed and life would go on as normal.

It was a few days before we heard the news. I think I had to call the doctor, instead of getting a call from her. I'd grown more and more nervous as we waited. That word kept whispering in my ear. Cancer. Cancer, it said.

Photo by Marla Austin Photography

Finally, we found out. It was cancer. Any shred of hope I'd had disappeared. It felt like I stopped breathing, like my heart stopped beating in my chest and my lungs couldn't take in air and I wanted to die. Susanne was worried, staring at me for the news. I told her. She panicked. She started crying. And all I could do was numbly listen to the doctor. She gave us a referral to an oncologist here in town. There'd be tests. Medicines. Possibly surgeries.

My reality had suddenly changed. And I hated it.

I grabbed onto one tiny thread of hope at that point. After all, everyone knows that breast cancer is beatable. There's hope. Hope For The Cure, Pinktober said. It was everywhere, everyone knew that it was beatable. As long as she hadn't advanced to mets, we could shrink and remove the tumor, and she'd be healthy again, even if she had to wear a padded bra to keep from looking lopsided because one breast was half-missing.

There were days of tests. She had a mammogram to make sure it wasn't in the other breast. A PET scan to look for any signs of mets. A surgery for her port for the chemo infusions, and a liver biopsy. There was something on the PET scan that we weren't sure what it was.

I knew. She didn't just have cancer. She had mets. It was Stage IV.

My soulmate, the woman who'd stood by me through so much, through my own illnesses, through family problems and money problems and any other problem life could possibly send my way. She was there with me.

I tried to hold my breath after we found out there was something on the liver. I tried to pretend that if I just held still enough, if we stood there and counted our heartbeats until the danger had passed, that it wouldn't come for us. That it wasn't mets. That it wasn't the deadly stage.

But that voice, that part of me that knew, I knew this, too. She was dying. I was going to be left behind. I was going to be staring at another grave, like too many times before in my life, and I'd be talking to the wind instead of her.

Her oncologist confirmed it. It was Stage IV. He stayed positive, didn't mention that the average lifespan after Stage IV diagnosis was three to five years. He pointed out how many women with Stage IV went on to live even decades after their diagnosis. Susanne held onto that. I tried. I'd never been able to see living without her, not until we were little old ladies, living in an assisted living home and wearing goofy t-shirts and being annoying to the other residents and people working there with our random outbursts of laughter over nerdy, silly things that everyone around us would wonder what the hell we were talking about.

Suddenly, I was facing the idea that I'd lose her before I even hit forty. That I'd be a widow before we even got to marry. Someone else was leaving me. I was being left alone again, and I honestly didn't know what I would do without her. I couldn't see a future anymore. It was gone. I'd lost my dreams and my life already due to a psychiatric illness that took me away from the possibility of work, of a career, of school, but I could deal with that, as long as I had Susanne.

Now, nothing was there. It was just me. Just me and an elderly cat with Stage I kidney failure. That's all that was left.

Every day, I cried. I panicked. I made plans for what to do when the inevitable happened. I started trying to figure out what of hers to give away, what to send to charity, what to keep. I started looking at her wanting to say "I'll miss you" instead of "I love you." I did my best to keep that thought to myself. I was her main support, I was the shoulder to cry on, I wasn't the person to be doing the crying.

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Tune in tomorrow to read the second part of Jen's powerful essay, The Life of a Caretaker.

Wedding Photos

Wish Upon a Wedding has released some of the official pictures from Marla Austin Photography today. I want to share a few of them with all of you.

Tis Me! And I love my wig.

The love of my life.

From L to R: Rebecca F., me, Shari (officiant), Jen, Sara L.

First kiss!

From James Avery Jewelers. In Hebrew it reads "Where you go I will go from the Book of Ruth

Jen's bouquet has green carnations, mine has pink. Mine was also in METAvivor colors.

Wedding: A Recap

As I write this, I'm snacking on dipped pretzels provided by Rocky Mountain Chocolate Factory as wedding favors. They're good.

It's Monday night. well, technically, Tuesday morning. Twenty-four hours ago, I was collapsed exhausted in a very comfortable bed at the Hampton Inn, recovering from a day which, for me, began at four in the morning. I've been waking up at that time for the last week and a half to take my antibiotic, which has me accustomed to the routine. It was only two hours before the alarm would go off and I couldn't fall back asleep, so I decided the hell with it and got up.

We left shortly before 8:30 to stop to get a newspaper which had an article about us in it, and some drinks for the trip, then picked up a friend on the way out of town. We went to the Hampton Inn for early check-in, meeting the wedding planner, and got our first glimpse of where we'd spend the night. We were then given the jewelry donated by Rhylan Lang. One necklace was a pendant, the other was a strand of three. They went beautifully with our dresses. The pendant matched the gemwork on my dress's bodice, and the three-strand one matched the drape of Jen's gown.

Then we went to the reception hall and got a preview of that, and boarded the party bus for Council Bluffs. At the EQ School of Hair Design, the bridesmaids all got dressed while the instructor, Margi, herself a two-time breast cancer survivor, helped me with my wig and styled in the veil and tiara. Christine from Blush Makeup Artistry painted up my face. I was airbrushed, such a weird sensation, and I wore false eyelashes for the first time.

Christine, myself, and Margi

The bridesmaids all had their hair and makeup done after, while the rest of the party bus riders relaxed in the salon with snack sacks my mother put together and brought to the salon for everyone.

The wedding party plus Kim at the salon

After that was done, we all boarded the bus again and headed to Willow Creek Glass Chapel. We got lost once and had to turn around, and it was well off the beaten path on gravel roads which kicked up a ton of dust. Because some windows were open due to the warm temperatures, everyone at the back of the bus got covered in dust.

Jen and I got changed into our gowns after we got there, and donned the jewelry and posed for pictures. While standing around and trying to walk in them, my pumps rubbed the sides of my feet raw so I ended up abandoning them for the actual ceremony, especially since I had to go up and down several steps without a railing, which isn't easy for me to do.

Aside from the shoes, the ceremony went beautifully. Once we were done and out, we boarded the bus again for a much longer trip, without any stops this time, for the reception hall.

From L to R: Caity, Micchi, Rebecca F., me, Jen, Sara, Amanda, Rebecca H.

 Dinner was excellent and for the first time in my life I had a potato salad I liked. Sweet potato salad. Then we cut the cake.

After the cake came the first dance. The song we picked dropped the F-bomb a few times, but it was so perfectly us we had to use it. Here's To Us by Halestorm.

We danced the Time Warp, we were given a bottle of homemade mead from a friend, everything went perfectly. There were a few minor bumps here and there, we were devoured by mosquitoes during the photo shoots, and I have not been that physically active in a long time and I felt like a giant bruise by the end of the night, but it was beautiful and perfect and we loved it.

Cake was chocolate, the cupcakes were raspberry

Wedding Day!

This is scheduled to be posted automatically during the time of the wedding. I want to thank everyone for making this day possible.

First, thanks goes to Wish Upon A Wedding, because without them, none of this would be happening.

To Cindy Lange-Kubick of the Lincoln Journal-Star, for running a feature in today's paper to highlight Wish Upon A Wedding and the awesome people who made everything happen.

To Tina Schneckloth, my wedding planner from Kimera Wedding & Events, for all of her hard work getting everything coordinated and on board with this event. She's the reason everything is going so smoothly. And an extra thanks to Jen from Cherry On Top Events for helping Tina set everything up today and your assistance in seeing that it all runs like clockwork.

To the Willow Creek Glass Chapel and the Millard Plaza Ballroom for hosting the Ceremony and Reception, respectively.

To Shari from I Choose You Ceremonies for officiating the wedding, and writing up a beautiful ceremony for this special day.

To Andrea Erickson, for lending your powerful voice to a performance of Shania Twain's "From This Moment On" during the processional.

By Marla Austin Photography

To Scott from A Joyful Rose DJ Service for providing the music throughout the wedding and the reception, and having even a few obscure songs we wanted.

To Marla Austin from Marla Austin Photography for the beautiful pictures taken for the engagement and the wedding itself.

To Cali from A Sound Impression for the wonderful engagement video and the videography of the wedding and reception.

To Blush Makeup Artistry and the EQ School of Hair Design for doing the entire wedding party's makeup and hair, and working with my wig so I can wear my veil.

To Rhylan Lang for the stunning bridal jewelry gifted to the two of us to help make the day even more special (and sparkly!)

To Corum's Flowers and Gifts and Country Elegance for the flowers and decorations for the chapel and reception hall.

To the KROC Center Catering for a delicious meal, and to The Cake Gallery for a gorgeous wedding cake. A tasty note to a wonderful day from the both of them.

To M&M Advertising for the beautiful invitations, to Rocky Mountain Chocolate Factory for the wedding favors, and to Memories For Life for the guestbook.

To Jone-Z Party Bus for the transportation to and from the chapel, and finally to the Hampton Inn and Suites for providing a room for Jen and I after the reception so we might have a chance to unwind in private. (We have 3 out of town guests currently staying with us over the week around the wedding)

It's an incredible day and it wouldn't be what it is without the contributions and help from each and every one of you. Thank you from the bottom of our hearts for this, and may the coverage send paying customers your way. That's the gift I have in return for everyone's amazing generosity.

Getting closer to the big day

My tooth extraction yesterday went smoothly. The Tramadol I'm already on, coupled with Tylenol, is doing its job of keeping the post-op pain at bay. It's making me nod off quite a bit though. I normally only take Tramadol before bed to stave off arthritis pain in my lower back. I know it is arthritis and not bone mets because the arthritis was confirmed and diagnosed with X-rays a couple of years prior to the breast cancer diagnosis, and it hasn't changed or moved. The Tramadol also helps with joint pain brought on by the Femara.

It is now exactly 15 days before the wedding. The itinerary for the wedding day has been written up, a fine piece of time management by my wedding planner, Tina. She's following up on a few more things for me, and Jen needs to finish setting the reception music with the DJ, Scott. The cake, the catering, the flowers, the decorations, all that's finalized and will be ready to go. I'm super-grateful to all these people who are volunteering their time, energy, and resources to make this a special day.

The Best Maid, Sara, has put together gift bags for the wedding party. It was her idea. She suggested something, I brought up something else, and it snowballed into a project she's enjoyed doing. She's a rockstar. She's also putting together an in-case-of-anything emergency bag with the Matron of Honor, my BFF, Rebecca. Rebecca is also in charge with making any necessary phone calls on the wedding day and helping me transport people to and from the reception.

METAvivor Ribbon Charm

Sara made beaded necklaces with the Metavivor ribbon attached as a charm, and my bridesmaid, Micchi, made matching earrings to go with the necklaces. These are just some of the goodies included in the wedding party gift bags.

Speaking of gift bags, my mother is having fun planning and putting together snack lunch bags for everyone who'll be riding on the Jone-Z Party Bus from the reception hall parking lot, to the chapel, and back again, since there'll be a layover around lunchtime at the hair salon where the party's getting hair and makeup done. These bags will include a variety of treats, ranging from healthy (and low-carb) options to indulgent, and include a bottle of water and wet wipes for cleanup. She's also bringing up some local soda water from Texas, fifteen bottles in a cooler, for people who want something other than water to drink.

All this activity and the prospect of a lot of people is triggering Jen's anxiety disorder, so Sara and I, along with Jen's "sister", Kim, are plotting ways to keep the attention off her and keeping her from getting overstimulated and having a meltdown.  My own anxiety disorder is far more mild and tends to present itself when I don't have a lot going on to occupy my attention.

As far as the plans for Pinktober go, I've got almost all the days filled. I'm holding off on writing any more posts to see what my guest bloggers will produce, along with an interview from someone at Metavivor.  I think I have the hang of this queued posts thing figured out, and I'm looking forward to seeing these going live. I think it will be a good month for everyone reading. I'll have a new tag, Pinktober, for all the posts for the month.

Still Waters

You know what they say. Still waters run deep. Right now I haven't been updating the blog because, well, I've been updating the blog. I have over twenty entries queued up to be published, one per day, throughout the month of October. I'm not done. I want to have one post for every day. I have a couple incoming guest posts (hopefully) and at least one interview with someone at METAvivor, hopefully two. (I haven't heard back from one of the ladies I've asked yet)

I also started a Facebook page specifically for this blog, for a few reasons. One, so people don't have to friend me (and vice versa) just to be notified when I update, and two, so I don't end up spamming my wall with posts, especially in October when I'll be sharing one post a day. You can find and like it at Metathriving on Facebook.

Things are falling into place for the wedding, along with an upcoming interview with Cindy Lange-Kubick of the Lincoln Journal Star which will focus on Wish Upon A Wedding, and run in the Sunday edition the day of the wedding, September 28th. I'll be sure to post a link as soon as I can, which probably won't be until the Monday after.

The sample demo our wedding planner put together

 

We have the catering menu selected. The two main dishes will be Madeira Chicken (Pan seared chicken breast kissed with a shitake mushroom Madeira sauce) and Pork Loin Roulade (Apple, cranberry, sage stuffing, cider-juniper veloute). Jen is getting the chicken, and I'm eyeing that pork loin hungrily. The cake will be a single layer cake with cupcake tiers, with dove cake toppers and decorated with snowflakes. This is a nod to both our deities. Jen is a daughter of Loki, who, according to Norse mythology, is a Frost Giant. (No, that's not just a Marvel movie thing, and in the myths, he's Odin's oath brother, not Thor's adopted brother. Marvel takes a lot of creative liberties with the myths) And I follow Yeshua, hence the doves.

We have a great DJ who Jen is working with to create the soundtrack for the evening. Our song of choice for the first dance is a bit unusual, but the song fits us so well. "Here's To Us" by Halestorm.

Stuck it out this far together
Put our dreams through the shredder
Let’s toast cause things got better
and everything could change like that
And all these years go by so fast
But nothing lasts forever

Here's to us
Here's to love
All the times
That we messed up
Here's to you
Fill the glass
Cause the last few nights
Have kicked my ass
If they give you hell
Tell em to go fuck themselves
Here's to us
Here's to us

Like I said, it's not a traditional choice, but it suits us and our history. That's more important than picking out some overplayed pop or country song because it's "typical". This is our wedding, and we want it to reflect us.

To recap, if you want to be notified of updates to the blog and you're on facebook, you can Like the page Metathriving. I also have a Twitter, and I try to remember to link updates there as well.

PSA

So I have it on good authority that my choices for background music for my funeral viewing suck. No Jpop for me. All the cries. ;_;

Oh, well. I suppose when it comes to music, I really should listen to the person who 1) will be there to listen to it and 2) can actually HEAR the music in the first place.

Funeral viewings aren't exactly the place for peppy, perky songs sung in Japanese. Gosh darn it all to heck.

And I accidentally resolved my dilemma about when to share this blog with Jen by sharing it on FetLife in a comment on the Breast Cancer Suvivor/Support group and she saw my comment show up on her feed.

Oops. Oh, well. That solved that problem, I guess.

And yeah, I'm on FetLife. I have all the sexual drive of a rock thanks to the medications, but the snark groups there (like Spectators Only, No Participants and Profile Pitfalls) are always good for a laugh. Oh noes. The world knows I have a passing interest in Kink (and yes, oh god yes, it predates 50 Shades of Utter Crap) however shall I cope.

yes, basically.

In other news, Mom's getting me my first pedicure tomorrow. We shall see how this adventure goes. Related, I have two new pairs of shoes. A pair of gray peek toe pumps, and a pair of black solid toe pumps. They are surprisingly comfortable for my feet not wearing anything but sandals in forever.

I also picked up some new ecig juice to try. Bavarian Cream. Mmmmmmmmm.

Wish Upon A Wedding

Wish Upon a Wedding, as I mentioned a while back in my last post, has granted Jen and I our wedding wish.

Our wedding planner, Tina, has been hard at work getting positions filled, and finding venues and volunteers. A marvelous photographer and videographer have already met with us for the engagement session, so the foundation can share our story.

Susanne & Jennifer : A Love Story

Many thanks to Marla Austin Photography and A Sound Impression for their hard work!

Our wedding party has all confirmed being able to attend, and the invitations have been mailed out. We're already starting to get the RSVP cards back.

Sunday, the 28th of September, is looking to be a long day, as we have to be at Omaha by ten in the morning to get checked into our hotel, and then meeting at the parking lot of the Millard Plaza Ballroom in Omaha to board the party bus donated for the evening by the Jone-Z company. We'll have a stopover in Council Bluffs for the wedding party to get hair and makeup done for the ceremony, and then off to Shelby, Iowa to the Willow Creek Glass Chapel for the ceremony.

The wedding colors are raspberry pink, gray, and black. Jen's dress is pink, mine is a soft dove gray, and the wedding party will be in black. There will also be touches of green and teal to represent the metastatic breast cancer ribbon.

We're asking that in lieu of gifts, donations be made to METAvivor Research & Support, Inc. in our names.

In the meantime, I've been writing posts on the YSC Forum and I should repost them here as well. It captures my frustrations with having metastatic disease, and the overall lack of support and research that goes into a cure for us.

*bell rings* Round Four!

I start Round 4 of Taxol today. I have 9 more infusions left to go counting the one I get today. (If I said 12 elsewhere, it's because I can't math). I'm going to push for surgery afterward, especially to have the tumor examined to make sure it's still ER/PR+ and Her2- before we begin hormonal therapy.

I'm also going to talk about NOT getting Tamofaxin, because I've read that it interacts poorly with Prozac, which I need to keep my brain from going loopy-depressed. I've battled chronic depression all my life.

Kohl's is still using the stupid Pink Elephant campaign despite now being fully aware they are co-opting METAvivor's campaign. We're still doing Occupy #TalkPink on twitter, and I'm trying to get some other #Talks off the ground, like #TalkMets, and #TalkBlue (for male BC) and #TalkIBC (for inflammatory breast cancer). It's slow, but it seems to be picking up.

Today's a busy day. I ended up with an extra Metastatic Navigator kit from YSC, and I'm meeting with my Nurse Navigator at the cancer center today to hand the extra one over to her to pass it on to someone else who could use it.

I also will probably find out if I'm getting a house. My parents are going in on renting a place with me, my partner, and our roommate so they have a place to stay with us when they visit instead of hotels and can help take care of things around the house if I need it. We found the absolutely most perfect place ever. Cross your fingers and say your prayers that we get this place. I will cry so hard if we don't. Please let something go right.

EDIT: WE GOT THE HOUSE!!!!!!!!!

I'm lucky my parents are finally in a financial place in their lives to do this, and I'm doubly lucky that they accept the fact their only child is gay, and accept my partner as their own daughter. My partner's parents are pretty supportive too, although my MiL is still pretty resistant to it most of the time. She bounces back and forth. My FiL is awesome. We're damned lucky.

My partner, Jen, is slowly coming to terms with this. It scares and depresses her, and she's taking it harder overall than I am. I haven't shared this blog with her yet because I don't feel she's ready. It took me a while to get to a place where I felt ready to discuss my own mortality.

I love her dearly. She's my light and my always. We've been together seven years this January, and still going strong. The early years were the hardest, before we got a clear diagnosis for her own health problems and got her on medication which stabilized it. Her health problems fall under the medical end of psychological, along with severe anxiety disorder, so it doesn't help her in getting to where she can handle my diagnosis easily. She's getting there though, and I'm so proud of her. I'm so in love with her. I'm so lucky to have her in my life.