Some of you may have noticed, but I deactivated our GoFund me Campaign tonight. We received enough donations from those of you who donated your hard earned money to us to help us get to North Carolina for my doctor's appointments, paid for our room and food, our car rental, our dog boarding, and medical expenses we had for the past month. I can't thank you enough for all you have done for us, and I am forever thankful that many of you were willing to donate. We are now receiving help from Care Coalition to help with the extra expenses associated with moving and they have come through for us as well. I will be making my move to North Carolina on Wednesday (permanently) and Jim will follow about two weeks later with all our belongings. Jim will be arriving with me to NC but we will have to come back to Vegas to take care of packing and shipping my car. For those of you wondering, yes we did find a house and we should be moving in on July 1st. We are going to be living in Southern Pines again.
Many of you have been keeping track of my journey, and I haven't written in some time because the pain of having cancer has reared its ugly head. I am in pain much of the time now, especially in the evening. UNC Cancer Center has found more in my breast tissue versus what they found in Las Vegas, and it is actually worse than we thought. The cancer has spread into the Sentinal Node in my lymph ducts, possibly my back, and they found another mass in the right breast roughly 0.5 cm in size. My cancer has grown to 2 cm now, so I guess you can say I am really ready for this thing to come out of me, and chemotherapy to get rid of what has spread.
I am a bit tired tonight, so I will end it here. I am looking forward to North Carolina, and hopefully I can get a workout in tomorrow (this week has been ROUGH). I have been a quite a bit of pain so I think I need a good workout.
Thank you all for everything you have done to help us. I hope I can return the favor, and I am trying in some ways to do so.
Much love to all of you!
As strong as I am trying to be given the circumstances, it is getting incredibly difficult to stay the course of positivity. So far, everything that has occurred in NC has been okay. I met with the entire surgical staff and radiation oncologists, and a surgery date for my double mastectomy is set. I am extremely happy that all of those things in North Carolina worked out (I was sure it would), but everything in Vegas has turned out wrong in every area. I don't expect any real special treatment because I have cancer (other than my handicap placard), but one thing I do expect is respect and a since of dignity when someone speaks to me. It seems like every place turn, I have been treated like absolute garbage. I am not saying all people are bad, but I have been met with straight up nastiness the last month I have been here. Take for example, I am at Walmart - I have my cart and reusable bag trying to get to my car. I am in the pedestrian walkway so I have the right of way. Of course I still look both ways, and I see a car driving EXTREMELY fast in a parking lot. Of course I stop as I do not want to get hit by this crazy man. I wave my hand to signal to him to go. You know what he does? He honks his horn at me and says something along the lines of "hurry up and go you nigger." or something to that effect. The words I heard clear as day was hurry up and you nigger. I mean, seriously? This doesn't hurt my feeling per-say as I do not know this man, but I haven't heard such brazen racism in quite some time.
Stress has been a killer for me. Moving is tough, and we are moving on the fly to add to that. Luckily we found a good man that we are renting from and a really nice home for us to live in that is within our budget. I have been hospitalized twice due to cancer related complications. The first doctor straight up forgot about me, but thats okay. The second was a Nurse Practitioner and I really liked her. When it came time to fill my Rx, the first pharmacy we went to, I swear the pharmacy technician didn't listen to a word I said. I told him that I was a cancer patient and I had proof of this (yes I truly did) and he was still a straight up asshole. I told him that we were moving in a week and a half, for cancer treatment and he still acted like an asshole. I mean really? Is acting that way really beneficial for anyone? Also, why do they feel the need to be straight up mean to me when I try m very best to be as polite as possible. Sometimes it doesn't feel worth it.
Then my drama this morning when my own publishing company who REFUSED to e-mail me back for an entire month about my royalty payment. They had ample time to tell me that I was still in the red, but my contract (which I still have) is different from theirs. I had to go over their heads to even get them to RESPOND to me, and then the customer service individual straight up lied and said she sent me all of the information. Well, this girl (me) keeps receipts and I showed them proof that she had zero contact with me. So on top of all of that, they tell me I don't get any royalties because I owe them $4,000 from the advance - which my actual advance was only $2,000. So they will be taking money away from my royalties for the next 6 months, which is the next pay period for my book. I feel all most stolen from. That was really the straw that broke the camel's back for me. I did have a good cry and then I had to suck it up and remember I still have to fight cancer no matter what these people do to me. I guess I am just appalled at how easy it is for people to royally screw you.
I am doing the very best I can, but things are getting harder and harder for me to deal with. I love crafting as it keeps my hands busy and I don't think about the things that hurt me the most. I exercise 4 days a week - and even that has been its own struggle as I have lost strength in my back and arms. I get nose bleeds everyday, and I have pain all most everyday. Some days are asymptomatic, and those are the days I try to get the most done.
I am not going to lie to you - yes there are days that depression exists and the frustration becomes overwhelming. I won't lie about that. I know there are a few of you out there that will tell me to suck it up - but until you experience cancer and all of THIS it is easier said than done. I am doing the very best that I can given the situations I have been put in, but things are not easy, and I am truly ready to be back to North Carolina.
Writing in my blog helps me put things in perspective. one thing I can say is that many of you have supported me in so many ways and I am so thankful for you.
One thing I will tell you that I have learned from this entire experience. Be nice to each other. You have no idea what another individual is facing, and being rude and nasty to them could break them. A nice comment goes a LONG way, as I explained during my American Airlines flight. It wasn't the big things that made the difference - it was all the little things the staff did that made me happy and brought me joy and less stress in my life. Those are the things that really matter.
I just wanted to write a short blog post to keep you guys updated and share my feelings :o)
Much love to you all. I will be posting more items on ETSY today, so keep a look out!
You are loved, even if it may not always feel like it.
I am pretty exhausted from today's ordeal, and I writing from a hotel room with VERY slow internet service, so I am going to write what I can here. Jim and I are back from UNC Cancer center and we finally have a treatment plan! I feel more at ease now that we know what we are doing for my cancecr treatment. The UNC clinic is CRAZY efficient. We stayed one room and we saw Radiation oncologist, Surgery Oncologist, Plastic Surgeon, Geneticist, and Radiologist. CRAZY!! BUT amazing!
So the one piece of good news: I do not have to undergo radiation because of some of the choices we made (I will go into that). Radiation isn't really dangerous, but it is one step we can skip because of the treatment path we decided to go on.
Many of you are wondering so...we ARE going forward with a double (or bilateral) mastectomy. The reason we decided on a double (or bilateral) instead of simple (or unilateral) is because the Risk/Benefit ratio was higher on the risk side if I kept my right breast. I want to prolong my life without having to worry about my breasts trying to kill me again. This is a deeply personal decision and a difficult one as I am losing both my breasts, but Jim and I talked at length with the Surgical Oncologist and it was a decision she would have made if in my position. She did NOT say this until after Jim and I came to a decision. I am the one living with cancer, and many may not agree with my choice, but I want to prolong my life and this seemed like the most logical for both treatment AND prevention. Along with this, I did decide to go foward with reconstruction. The reason is more psychological than anything. Since I am going forward with a double mastectomy, I didn't want to wake up in complete shock after surgery being completely flat. Also I feel that this will be easier for me to deal with as far as healing and curbing what is known as phantom pain. I feel that having something there will make it easier for me to accept that I have no breasts. I also do not want to try to field questions about why my chest is flat or why I have no breasts. In case you're wondering, I decided to stay the same size. I really can't go any bigger because I am muscular, and since I am not keeping ANY breast tissue, it makes the procedure more complicated. My chest will be numb forever, but hey, if it saves my life I'm okay with it.
I will have to undergo chemotherapy. The surgery is first, so I may not have to have aggressive chemotherapy. This is a good thing as I hate being sick all the time. I will have to go in once every 2-3 weeks for treatment. I will have to undergo hormone treatment for 5-10 years after the completion of chemotherapy - basically I have to take hormone pills everyday. This does inhibit my ability to have children, but if I stop taking it I can still get pregnant. The doctor already told us we wouldn't be able to try anyways for 2 years. This works out for us anyhow since I had no intention of getting pregnant within that timeframe.
The radiologist performed another ultrasound (yes she performed it). She saw 2 abnormal lymph nodes under my left arm so they will be biopsied tomorrow. I am not exactly looking forward to getting yet another biopsy but it is important as this will see if they will remove all my lymph nodes, and confirm the MRI that the cancer may have spread into that area. If this is the case, they will remove all my lymph nodes on the left side, but from what I understand they planned on removing them anyways.
The surgery will take place first. They will perform this about a month from now. The doctor said there was no risk in waiting, so this gives Jim and I some time to move out of our home in Vegas and move to NC. It will be tight but we have the ability to do it. The reason why it takes a month is because the surgical oncologist and plastic surgeon have to coordinate their schedules since they do EVERYTHING in one surgery. My chest is apparently really muscular with NO real room up in my chest cavity so they are going to TRY to put in silicone implants, but if they can't they will put in chest expanders that I have to go in every few months to get filled. This is the downside to the reconstruction if you are relatively skinny or very muscular (the latter being my case).
So, this is the treatment plan. This may not be what you would do, but every person is different. I just ask that you please respect the decision that I made, as I am happy about my choices and feel like I gave myself the best chance for longevity of life. I appreciate all of you and how you have helped me during this time. We will keep you updated as time permits here in NC.
Much Love to all of you!
My husband has been working very diligently in regard to my cancer care, but he had to learn the hard way that not all charities are created equal. I, on the other hand, already knew this. I donate to 2 major charities, and that is the Special Operations Warrior Foundation and Care Coalition. The reason I donate to these charities is because I know where the money is going. Most of their funds go towards actual aid, with very little going towards salaries and basic overhead. Let me give you a quick rundown of some of the breast cancer charities and how difficult it can be to see where the money is actually going.
On the list of WORST charities you will find the Breast Cancer Relief Foundation. The CEO makes roughly $162,000 per year and the president makes roughly $103,000 per year. Not too shabby in regard to their salaries because let me tell you, I have seen WAY WORSE. Some CEOs of charities are making MILLIONS of dollars. In a 10 year span, they raised around 63.9 Million dollars, and paid out 44.8 million to solicitors. Solicitors essentially get the donations for the organization so these monies are normally going to employees of the actual charity itself or major companies that support the charity (makes zero sense on that one right?) and those who host fundraisers. Now, how much did the Breast Cancer Relief Foundation actually pay to those like me? Well, in 10 years, 1.4 million went to direct aid which may seem like a lot, but it actually only equates to 2.2% of total revenue given to the organization itself. So, with this charity, for every dollar you donate, 98% is going towards overhead, companies, salaries, and fundraisers, while only 2% is going towards those who need it. In my opinion this is not a good ratio for your hard earned dollars.
The next Breast Cancer charity on the worst list is the Woman to Woman Breast Cancer Foundation. This is a smaller foundation so the money amount will be smaller, but the distribution is worse than the aforementioned charity above. This charity is a husband and wife team. So the CFO made roughly $39,000 in 2014 and his wife, the CEO made roughly $38,000 in 2014. In a 10 year span, they netted roughly 19.4 million dollars and 18,2 million was paid to solicitors. in the 10 years they filed tax returns, only $58,708 went towards direct aid - which works out to be 0.3% of all revenue going towards someone like myself or screenings for those that are less fortunate. The fact that this charity only gave 0.3% to patients is what is unfortunate about this case, and even worse that the CEO is a breast cancer survivor herself.
Now - let us just use a general cancer foundation. We will take a look at the Cancer Fund of America. The CEO salary in 2011 was $236,815 and the CFO salary in 2011 was $121,152. In a 10 year span, they generated 86,6 million dollars in donations. They gave 74.4 Million to solicitors, and a measly $853,491 went to direct aid to cancer patients within a 10 year span. That equates to 1.0% of total monies made going towards people that actually have cancer.
These are just examples of how charities don't always put the money you donate where it belongs - to the people who truly need it. My advice for all of you who donate to charities is to understand and know where your money is going. Yes donate to charities - but makes sure that a reasonable percentage is going towards those you are trying to help.
This is the main reason why I want you all to know where your money is going that you donate to our crowdfunding campaign through GoFund Me. I want you to know that your money isn't going towards luxuries in life - it is going towards SAVING MY LIFE. We have reached out to breast cancer organizations that are supposed to help women and their families get to locations so that the cancer patient has a good support system with them, but I already knew this was a very lost cause. Beware of anything that says "awareness" because normally that means that the money donated goes towards giving hospitals pamphlets on certain issues rather than actually fighting it. The awareness part is all most what is the most troubling, because you have no idea how many doctors I had to go through to get a straight answer about my cancer. Many thought I was way too young to have breast cancer, and they are right. I don't fit the epidemiological profile for a breast cancer patient, but the fact of the matter is - cancer does not discriminate based on your age, sex, skin color, ect. Sometimes cancer just happens, and in my case more than likely it is genetic.
Don't even get me started on how difficult it has been to get my genetic profile back and I am STILL WAITING to receive them because my doctor likes to hoard information, which is awful for a cancer patient. For some strange reason they want to wait until the 13th of June to go over my MRI, which I already have, and my genetic profile - and I finally had to tell them that I was going to be seen at UNC and they still do not want to give up my genetic test. It is my genetics - not DR. Tarhar, not the hospital, they are mine and I have rights to them. The fact that this physician is flat out refusing to release them to me so I can take them to UNC is a bit appalling. Every doctor I have spoken to outside of Dr. Tarhar's office has asked me where I am going to for treatment - and when I say UNC they all tell me good, do not stay in Vegas for your care.
If you are curious about the top worst charities there is a link below which you can look up specific information. Digging up some information can actually be quite difficult. This is probably the best compilation I have seen for charities, and Forbes also gives up some good information about where the money goes when donated to charity. I am not saying don't donate, but know how your dollar is being spent. I donate to charities that I know is helping those who truly need the funds. You want most of your money to go towards the people who actually need it. If your money is just padding pockets, it isn't worth your hard earned dollars. Give back, but give back to those who need it.
Thank you for all the support and love. We never feel alone with all of you by our side.