10 days away and STRESS

All couples have told me that the weeks before their weddings were stressful... Managing the final payments, settling with the vendors, finalizing the small touches etc. Needless to say we are stressed. Most things we have to do, we actually need to do ourselves & what people could help with would take minutes. We have people who offered to help & we have been turning to them here and there to help put the last things together for the wedding. Since I am a stubborn mule, I want to do some of this myself to make myself proud that I put that wedding together with Kyle.

On top of wedding stress, we learned yesterday that my scans from this past Friday were not ideal. I had progression on Carboplatin & Gemzar. My doctor reported that the progression is in my pleural linings of my lungs and not my lungs & the ommentum (the lining in our abdomen to protect and hold organs together) has spots of cancer & those spots are over my liver, which already had 3 1cm tumors on it in November. Off of Carboplatin & Gemzar... and now onto Halaven.

Halaven will cause me to loose my hair in the next 3 weeks. I could have begged for another chemotherapy, but my doctor picks aggressive treatments when we are strong and can handle them. I am ok with going aggressive & this Chemo is not in any trials I would ever be eligible for. Since I like to hit my cancer as hard as I can & I wont be blocking myself from future treatments & trials, I feel this is the best choice.

People have asked me why I didnt wait to do my scans until after the wedding. I did not want my cancer to keep growing. My markers rose twice and I have two pea sized lymph nodes I literally can feel on my right collarbone. So I am not putting off chemo just because I am getting married or because I paid a decent amount of cash (8grand) on a custom wig to cover the patchy baldness I ended up with from brain radiation. That wig will be virtually useless in 3 weeks, but the salon said they will work with me on that & I hope they can and will.

So I would say the days before our wedding are layered with my medical stress & also the financial strain due to the cost of my cancer treatments, surgeries, wigs, gas into NYC, parking, trains etc. AND I am most likely going to have to pay for a whole new wig that will run a couple grand unless I get a grant for a wig to get the next one for free. I keep hoping my insurance will cover the whole cost of my wig, but they don't even cover my infectious disease doctor and felt that my crainiotomy surgery part deux was unnecessary (because I could live with an infection in my head...what idiots) and they refused to pay the plastic surgeon in full. I seriously owe both of those doctors a decent chunk of change, but they are still working with my pain in the butt insurance.

Kyle has been out of work for 3mo, because he had no choice but to stay home & take care of me when I was on IV antibiotics. He is really a good man. Not many people would do that unless they knew they could get paid from FMLA or Unemployment. Kyle did not qualify for either of those benefits as we are not legally family and he left his current freelance job on his own will not because there was no work, so no unemployment. He is a good man who has supported me for 7yrs of cancer and 10yrs of my life & many more.

I have known Kyle for 10yrs. We met on 3/17/07 and my life has been blessed ever since. Well blessed because I have had him with me and I with him during all the ups and downs that have happened in the last 10yrs. Like I said, Kyle is like a rarity. He listens, he cares, he goes out of his way to make others happy, and he truly loves people and will never leave someone behind if they need him. He also deals with my distractability, poor driving, cancer poop, whininess (because sometimes I can make everything sound tragic, so "tragedy had befallen me" has been an ongoing joke with us), how I am late for EVERYTHING, and has held back his own emotions to help me cope with mine. I wish I could care for him better. I wish he didn't have to deal with so many trials in the last 10yrs, but I am also glad he has been there to hold my hand through it all. I am so glad he will be my husband. 10days until we are officially married.

I am trying to not focus on being on yet another cancer treatment, which means I am getting a shorter list of available drugs to keep extending my life. I am glad I have a new treatment plan and don't need to think and obsess about what the popping nodes mean anymore, they mean exactly what I suspected the cancer wanted to grow and was on the move.

I am going to use these next 9 days to 1. appreciate my life, 2. enjoy the wedding planning, and 3. find a solution to my hair & hope that plan A still works which will be - use expensive custom wig, glue on head on the 31st, and style like a normal girl and well then I don't care what happens to my hair anymore. I will be alive, with Kyle, and if my hair falls out & that means I will have my Kyle Cancer can take my hair for the third time. It cannot take my spirit and it cannot take the love I have for Kyle, my wedding or my honeymoon. So up yours cancer YOU SUCK, but I RULE.

OK now for serious wedding planning! I feel like Kyle and I have been married 6yrs already & this is just our big party we decided to have after a crappy 5mo... I think thats how I will look at it. Kyle and I have been together longer than most marriages or relationships. I cannot wait for our party to celebrate a decade of happiness and fun and memories and love and dedication to each other.

I am still running my GoFundMe. Thanks for all the donations and caring thoughts and meals that people have helped us with. Thanks for even the wedding gifts! Seriously we are speechless for the help and thoughtfulness of everyone.

Where is the CURE when we need it?

I took a big step back from being involved in Facebook 24/7 and removed myself from some groups for cancer as I was getting emotionally drained and overwhelmed. A lot of those feelings were due to having empathy where I feel everyones pain and want to genuinely help them. Is that an empath? Is that codependency? Is that just understanding the same fear, anxiety, scanxiety, anger, and sadness experienced by 100s of thousands of women in my Metastatic Breast Cancer network? I do not know, but I was pretty overwhelmed.

I would be lying if I did not admit that I am still overwhelmed. Why is that?
1. MY FRIENDS keep getting sicker
2. MY FRIENDS keep dying
3. THERE IS NO CURE TO SAVE US
4. We are on treatment until we run out of treatments or our body runs out on us & cannot take anymore toxic treatments and our organs fail.
5. 40,000 of us will die every year leaving behind husbands, wives, children, friends and family

This does not even include other cancers...then the number of people lost to cancer annually increases. It is sad. It is tragic. I honestly hate cancer.

I also want to say cancer is NOT a blessing. The best things that came out of it were the new friends I made, the strength it gave to my relationship with Kyle, and the appreciation of the present time we all have here today. I finally watched the full Jimmy V video. Click the link to watch this video... its pretty empowering. I keep a sign up in our house with a poem about what CANCER cannot take. I read it, it helps, but in my gut I am not ready to give up or go anywhere if I can control that.

Cancer cannot take a lot from us or me, but I am still angry at what it does take. Today, I am angry that Cancer is taking my friends. I am angry that unless there are more treatments or a cure Cancer will take my physical body & keep killing people I care about and you care about. I hate Cancer. Have I said that already?

I want to marry Kyle, grow old with him and have a family. While that can still happen, living with a terminal illness makes it seem less likely. I know and Kyle knows that LIFE is hard. We both dealt with my first cancer diagnosis at 25. I am 32... it has been 7yrs. We know life and relationships are not blissful 24/7. Most people who are approaching their wedding day are thinking of a perfect bliss forever. I am praying for bliss for a few months, a year, sometime of remission, less doctors appointments, and trips away that are not hospital stays at NYP.

I am also angry that we find cures for contagious diseases and that society thinks that cancer is preventative... I mean if you just exercise and eat right you wont get cancer right? WRONG. Cancer is genetic & if you get it, it is a crapshoot. 1 out of 2 of us will get cancer and 1 out of 4 of us will die from it. The world is working so hard at developing technology for wars to kill people, but it works slow at saving the people who are dying. Why can't we find cures for the terminal? I probably will never get that answer.

Now for the treatment news. I have been on Carboplatin/Gemzar for four cycles - 2 in December & then the forced 5 week break & two more cycles from February to the present. My markers were dropping in December, but as I said in my last post, the markers are rising & are the highest they have been in 2years. This past Friday I had my first CT scan since starting Carbo/Gem in December & a lab draw. We did this to see if I need to make a treatment change this coming Tuesday. Am I nervous? Yes. Why did I not wait to do these screens until after our wedding? I don't want to put off extending my life for one day, a great day, but one day versus the many I would hope to have if I need to change treatment. If the results are good, well then I have good news to celebrate. It goes either way & I have gotten to the point in my cancer journey that I know that I cannot expect to be in remission after every scan or lab & that the results are usually bad or good. Thats just how living with cancer goes.

I will most likely post an update after my doctor's appointment Tuesday. Please pray for me that the results are good & not that bad. I am also going to make sure I have my 8 week brain MRI scheduled for the week after my wedding. I want to stay on top of this stupid disease even if I cannot find a cure yet.

Social Media Break

Well, I finally completed the IV antibiotics. I also have done 2 rounds of Carboplatin and Gemzar. After my first round, my tumor markers rose. My doctor is slightly concerned that these drugs are losing their effectiveness due to my tumor adapting to them. Also a node in my right clavicle has now become a concern as it has grown according to my doctor and she suspects that could mean progression. She wanted me to continue on these drugs and wait to do my scans after my wedding. She wanted to save me the headache close to my wedding. My doctor said if there was no wedding she would scan me asap and get another TM read to determine if treatment would need to change and change treatment.

Unfortunately I do not like sitting and waiting to find out if something is truly not working. The last time I did that, I ended up in an ICU with a massive brain tumor. I want to make sure I know with scans and patterns of rising tumor markers that the drugs aren't working.

So what we agreed to do was to remain an aggressive Doctor - Patient team and schedule my Brain MRI and CTs next week & I would also get my tumor markers tested to see if this second round of Carboplatin and Gemzar is even working.

Many solutions can result from this, but I would rather know whats going on within me and have a treatment plan I can trust is working on keeping me alive. I would enjoy my wedding much more knowing my health issues and having a plan. I am not 100% sure what the plan of action would be. sometimes its radiation, sometimes its a chemo change. I will wait and see what that would be when I know and need to change my current treatment.

So here I go .... scan, treat, repeat. We all keep moving onto a new treatment, to extend our lives, hoping, wishing and waiting for a miracle. At the end of the day a lot of my friends are dying for a cure

I also have decided to step out of the online support groups for a bit. I need to distance myself from trying to help others and to focus on what I need to do for myself. I also have been consumed with political issues on Facebook and reading them on Facebook has affected my mood negatively. The solution was to leave most of the Breast Cancer Groups I am involved with, delete the Facebook app off my phone and also the Facebook Group App. I kept my Facebook Messenger app if you want to reach me or you can text me.

I am trying to keep my updates in my blogs up to date, but I had a pretty rough go in February. Since then I have been working out 3x/week either on the indoor road bike, yoga, walking/running. The exercise makes me feel good and feel hopeful that I will get back to stable cancer again. The exercise also makes me push myself beyond what I am comfortable with. Thats what I need to do for myself, for my cancer treatment, and to stay alive.

Also Kyle is still out of work, we have been much appreciative for all the help with The Gofund Me ,which has helped with travel, food, bills and treatment costs. The final cost has risen due to the costs I have been charged for my second crainiotomy. My insurance has been kicking back my hospital's billing department leaving me with many bills that are unpaid. Thanks!!!