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For Your Information

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Raised by 98 people in 10 months
My name is Jeanine. Im 38, married, have a wonderful 20 year old stepson, and the most beautiful, magical, 6 year old daughter on earth. I was lucky enough to be gifted with the best husband and father ever in my spouse. We also have settled in the home of our dreams, and find endless joy caring for it. We work, love working hard together, and devote our energies to our beautiful children. I also have metastasized brain, lymph and spinal fluid cancer, returning after invasive breast cancer last year. Its Triple Negative, and Non BRCA responsive, so my treatment options and success rate is severely limited. I'm in my fourth round of chemotherapy, along with radiation on my brain and in my armpit. I'm also in my first cancer study for chemotherapy. I'm sharing my story. I like showing it off, and using it to teach others about cancer, medicine, insurance, my own experiences, and various other topics I hope are of benefit. While I am scared, overwhelmed, and intimidated by what I have to face, I enjoy putting it before an audience, and making cancer - and illness in general - a little less ugly for all of us. My first financial goal for this campaign is to cover my out of pocket annual costs. Currently it's 3-6 thousand dollars annually. I have debt still remaining from my treatments last year that needs to be paid as well in excess of $2,000.00. My second financial goal is to amass funds enough to pay future costs. WHEN we are successful with my treatments, I will still need expensive scans every few months. I'll need $3,000 minimum annually to cover those expenses as well, plus any other costs, should I need maintenance medicines to treat lingering side effects.  At this time, an immunotherapy has just been released that treats Triple Negative breast cancer. This treatment currently doubles the life expectancy of triple negative cancer patients, potentially gifting me with a decade of more life with my family and daughter. If I am able to receive this treatment, I would have to take it for the rest of my life - at least ten years of full expense.  My next goal is to amass funds for lack of success - the third level of treatment. After this chemo, I would then be eligible for some additional studies or clinical trials, if the brain cancer stays away. These will be expensive, and may require travel. This would be burdensome on me and my family, and I need to prepare for it. I would also be responsible for the full cost of any treatments I receive outside the US.  My next goal for this campaign is also something I hope to avoid. I want to have funds enough that if I reach end stage cancer, I can be made comfortable and cared for without costing my family, or them suffering my loss of income. My husband is my caretaker, and my daughter is my star. If I end up needing hospice, I want their lives uninterrupted, and as supported as I would give them. This would be a luxury, because it would afford them the opportunity to be with me in my final hours, instead of worrying about work and expenses, or my discomfort. It would also buy me as much time as I can with them before I have to go. My next goal for this campaign is to fund enough of a balance with this and my own money and skills to be able to create some enriching events and activities for my family in the time I'm treated, or have left. We don't have much desire for travel or major expenses; we've always been conservative with our wishes, but id like to take my daughter to see the princesses at Disney, take my family to visit friends, get my daughter her puppy in a few months, and renew my vows with my husband. Id love to go on a hot air balloon ride, and a few other things. They're little things, simple, cheap, and silly. Some I'm already doing and paying for, but I don't know how much time we have left to do them. My ultimate and final goal for this campaign is to replace my life insurance. Due to my cancer diagnosis, I am no longer insurable in the open market. The life insurance I have through my work is my only coverage. If I am unable to work, I will lose this coverage, and my family will lose their ability to protect our home and assets. My husband and I worked very hard to turn a cheap, foreclosed property into a home most people would dream about, and its all my daughter has ever known. I want to secure it for them for the rest of their hopefully very long and happy lives.  My last goal is to have sufficient funds remaining to fund a voluntary mastectomy for my daughter, so she can afford one if she decides it's right for her. This would be a savings balance for her of $10-25k. Voluntary, preventative procedures in this country are still cost prohibitive, and tend to be paid for out of pocket by the patient. I will not have her experience this fear, this pain and suffering, and this mutilation, if I can possibly help it. If its possible for her to get a mastectomy and/or hysterectomy after shes done having children, or decided she doesn't want children, the last thing I want her to worry about is the cost. After all, its cost me $9,000.00 to have cancer so far. Its worth $10,000.00 for her to not.  If I am able to go into remission, and resolve this disease, if we are successful, if we are able to come out in the "Not zero" percent, I will use these funds to pay my costs, pay our debt, and assist other patients like me directly with their costs. I will also buy some supplies and gifts for my infusion lab. Things like hand fans, blankets, costumes, treats, a decent coffee machine, penlights and supplies for the nurses, all make treatment just a LITTLE bit more successful. Id also love to go through and pay the outstanding balance on everyone's bills with them in the lab. These payments go towards my lab's success, and I want everyone in there to feel this benefit.  What I've learned from all this so far, is that: 1. Everyone needs to buy private life insurance while they're young and healthy. 2. Everyone needs,to buy private disability insurance when they're young and healthy. 3. Long term illness isn't something to feel bad about. It's difficult, painful, sometimes insurmountable. It can make you feel horrendous, hideous, and inhuman. It is not, however, a life changer. It might shorten your life, alter your life style, or even end your life. But it doesn't have to change it utterly. YOU make what that life is. Your activity, your best effort, your health and maintenance, your enrichment and energy, are what make you You. Illness only takes what you give it. I'm giving this illness my raucous crowd energy, and a shit-ton of glitter. Please help me as I try to make this disease less difficult, and this life worth living.
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Struggling right now, but im certainly not doing anything else. May as well update. I get brain and spine MRIs monthly to show how were progressing. April and May were significant improvements, and I've been seeing symptom reduction this whole time. June, my scan came back "stable." For leptomeningeal cancer, this is generally a good thing = no growth, still on track.

Julys scans are showing the same thing. Stable. No growth, no change. All the doctors here are thrilled, theyve put a very aggressive cancer into stasis. I have had to remind them that i have goals in mind. I cant stop this treatment, living here for four days, causing ireparable damage to my kidneys and liver, if my disease is "stable."

Also, in order to switch to most any other treatment, Ill need 3 months of detox. If this cancer is still present and "stable," it could very likely grow back with a vengence during that 3 month period.

I still need to talk to my doctor, everyone cites her as the one to rely on. I was too surprised and upset to make the most of our limited conversation. What most others are stating is that i have bad news, but a lot of good news - still responding, still handling it well, and the longer i can tolerate and benefit from this treatment the better. Staying on this treatment for 3 years was mentioned. 3 years. I asked if that was really possible. "If anyone can do that, you can." Which is a vague way of shrugging, or saying no one has before. Im starting to run out of tolerance as it is.

So what ive had to do the last 48 hours is process the lastest reveal that this is bad. That popping into my local, friendly lab once a month for the next ten years for a miracle infusion like a glorified hair appointment is a little less possible. That i might live like this: a professional patient, for however much time i can get. That i cant afford the depressive eppisode ive been wallering in, not working out, not drinking enough, because that could take a day away from me, and i dont have many to lose. Phoebe asked to see the snake and turtle sculptures by the zoo Sunday and she shall not be disappointed.

Im going to be aggressive about making sure this is the best plan, and making the most of the days in between treatments to keep energy up. Frankly, it boosts my recovery ability anyway. I have unmet goals with fund raising as well, and id like to get back on that horse.

As always, let me know if you have any questions. I love you guys.
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Hello!!!
I'm currently in hospital for my sixth round of chemotherapy. Those of you on the gofundme contact list might notice a sudden influx of updates. As of late, the Gofundme ap has utterly refused to post pictures or video, so the facebook group, For Your Information, has gotten the bulk of my traffic. Im taking time on my new-to-me laptop to make some updates, and shift some pictures and video around.

General updates include the following:
Its expected I will be receiving chemotherapy through August. I'm hoping to beat that expectation and stop some time IN or before August. The oncologist officiating this study says she usually sees resolution around 6 months. I would vastly prefer not to give that kind of time, but we'll do what needs done. Leaving Leptomeningeal cancer unchecked is a very fast end game decision. I still want to keep playing.

I've been putting off a lot of fund raising activity "until I feel better." I have lots of neurological symptoms - face palsy, dizziness, difficulty walking, numbness, etc. I AM slowly feeling better, however, I'm tired of wasting time. I'm getting up off my tailbone and pooling ideas. Id like to stay on task and complete both the mortgage and Phoebe's fund. Thanks to all of you, I've already reached my goal of medical funds for the next 1-2 years. Stay Tuned!!!
In general, my health is good. I've struggled with some weight gain, which I intend to write an update about. Exhaustion is really starting to take a toll, but with symptoms improving, I'm having better luck combatting that with physical activity. Nausea has started to creep up after each dose, but I am well medicated. Depression has become much more troublesome, and your support and friendship, along with the love of my family, has kept me afloat. Going in the hospital for 4 days has been draining; going in the oncology ward even more so. We will definitely stay on top of it, and I will likely have something to say about that as well.

If you enjoy and get value out of these messages and updates, please leave a message or shoot an email. Please also keep sharing, especially to any others hat would value or provide perspective to the experience that is cancer or long term illness.

I love you guys.
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One of the difficult things about this study, and treatment in particular, is the lack of human contact. When you are only touched by hands in gloves with needles in them, or braces that hurt, or chemicals that toxify, it can leave you very damaged.
If you have a loved one, whom you hug or touch with affection often, who is going through cancer, a long term illness, or other form of physical isolation, its ok to offer to touch them.
Asking first is ok as well. They may hurt, have steroid rage, feel uncomfortable, be having a moment of panic or anxiety, and need space. Illness often makes the individual feel ugly, unattractive, hideous, undesirable, and unable to express affection themselves.
Hug them. Pat them. Hold their hand. Put arms around them. Put them in your lap during infusion, or if sizes differ, sit in theirs. Huddle close to look at a magazine or website together. Brush their hair or give a scalp and shoulder massage, hand massage, manicure, same to feet if you're cool with it. Spoon on the couch to watch a movie. Share a blanket. Link arms when walking.
My husband and daughter and a couple friends are my typical preferred contact sources. One of the nurses at my old lab is also a good partner for head pats. One of my doctors gives the best hugs. This does wonders and i encourage you to provide the same if you can. I love you guys.
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Lets talk about . . .
Medical Studies. Pretty much every drug or device you use has been through, and is going through, a study. The difference between retail drug testing and medical studies is . . . Absolutely Nothing. Some retail testing is even done in hospitals and colleges, and contributes to patient data. The study Im participating in is administrated by a private college, which is the same thing as a private business. So, lets best abandon that discussion about for-profit medicine and related moralities. Most drugs available or being made available are market driven.
Studies are at their core creating, building on, and adding to reliable patient data. Theres a strict regimin to follow, and requirements to be met. For-profit or not, the data MUST be as clean as they can get, creating reliable, repeatable results. It doesnt behoove these businesses to lie or alter data to fit their model. The important base to realize is that they are creating RELIABLE RESULTS, *NOT GUARANTEED.* "According to the study, ^most^ patients . . . " "this medicine USUALLY. . . "
The treatment Im receiving is in a 2nd level study, meaning its past initial trials and is now adding confirmation to its results. It does require some performance and condition on my part, along with having the right kind of cancer and history. This treatment is available outside of the study, but the patient would shoulder more treatment costs. The study picks up part of my costs. Having met my out of pocket max, this doesnt apply here, but is important for other patients.
To stay in the study, I have to keep my blood counts and other numbers in a healthy range, or recover them to a healthy range between treatments. I have to stay healthy - no excessive drinking or drug use. I have to get progress scans and tests frequently: 3 hour brain and spine MRI each month, spinal tap each month, blood work and urine test each round, CT scan every other month, sonogram every now and then. Not accomplishing one of these things can cause my removal from the study, which could briefly interrupt my treatment. I also have to get treatment under a certain time frame, not much more than every othsr week.
Ive also had to switch my medical group. I was working with SSM, and am now being handled by Barnes. Every medical group has its pros and cons, and i think a bit of my preference for SSM was familiarity, but the only specialist in this part of the world, and also the doctor administering this study for breast cancer metastises, is in Barnes. This is a predicament most all patients face, especially when switching to places like Mayo or ACA. The switch alone can cause serious issue and delay in their care.
Ultimately, participation in a study is a commitment to provide good data that will help other people. I have great numbers, and no other cancer. Ostensibly, id be seen as a study highlight, an optimum example of this treatment operating as best intended, and best example of issues that can present. Other patients provide a wider range of possabilities, and other case scenarios. This is valuable information for future patients who are trying to figure out whats best for them. I read these examples and results on other medications and treatment plans Ive received. A woman in 1984 died 2 years later than she wouldve, and the result of her life was reliably adding a couple more years to mine. Its important to me to provide this information. Important enough to tolerate several more spinal taps? We'll see!
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Raised by 98 people in 10 months
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