rachel2000's Cancer Blog
October 16, 2009
| about new york... | Views: 1607 |
Hey, don’t know what happened, but if anyone else was having problems reading “New York or Bust,” it’s back up and running. It’s about my new treatment plan, my doctor, and my new city! I hope you’ll try to read it again
Thanks for your patience, glad I could fix it.
-Rachel
October 16, 2009
| New York or Bust | Views: 1662 |
Howdy.
Got an update for you, folks, thought some of you might be interested.
In my last blog I had said we would be trying to go to MD Anderson in Houston, as they had several Hodgkin’s Lymphoma specific treatments and we thought it could be ideal for my treatment. But they were wanting $45,000 up-front as a deposit, not to mention further costs, and we just thought we should entertain other hospitals before settling. This high cost was because they wanted all new scans, biopsies, x-rays, tests, everything. They were not the only facility we were considering, so we thought it best to shop around. I hate the idea of bargain-shopping for health care, but this is the country we live in. Please don’t get me wrong, MD Anderson is a fantastic facility, it just wasn’t going to be feasible for us to afford the cost of care and for moving to Houston.
Originally, Sloan-Kettering in New York City was not our first pick to seek a clinical trial and find a new doctor. We just assumed it would be too expensive, being New York- parking and what-not. But it turns out that they are happy to work out a payment plan with us, have an abundance of Hodgkin’s specific treatments and clinical trials, not to mention an excellent reputation. We received the reassuring blessing of my current oncologist to go there for my treatment, so it now looks as though we’re moving to New York.
We’ll talk more with the hospital social workers, but I’ve heard I may be able to get expedited New York Medicaid because I already have it through Missouri. I’m not 100% sure how/why this works, but I’ll know more after talking with the right people. I do know that there will be some “in between” time where we will have to self pay, but we’re getting a major break here because Sloan Kettering will accept the previous scans, x-rays, and biopsies from Barnes Jewish. We’re going to be able to afford a place to live, too.
We’re flying to New York next Wednesday; Thursday is my initial appointment. The doctor I’m meeting with is fairly well known in the Lymphoma and Hodgkin’s treatment world, which makes me feel very confident in the care I‘ll receive. I’m so excited that this treatment plan is moving so quickly. I can’t tell you what a load off this is. We are fortunate enough to have some friends in New York and have a free place to stay while there. They’re also going to take us around next week to pick out an apartment. Things are certainly moving fast now. I’m hoping my good energy can hold out just a while longer until things begin to settle a bit.
I feel better about my prospects and my situation now. Truth be told, there have been more than one day where I realized that, although I was thinking of the details of finding treatment and thoughts of moving, I wasn’t actually thinking about my cancer itself. That hasn’t happened, well, since I was diagnosed! I guess that excitement is the best cure for the blues.
Goodnight, all. Rest easy.
-Rachel
October 10, 2009
| Hasn't been a good week. | Views: 1911 |
Let me start off by telling everyone that physically I feel good. My appetite has been great and I’ve gained weight over the last two months that I’ve been on Lenalidomide. I’ve felt perky, painless, restless, energetic, have no Hodgkin’s side effects, blah blah blah…
Imagine my surprise yesterday when my doc told me that the tumors have been growing and that she wasn’t entirely sure what the next treatment should be, but the Lenalidomide was definitely not working. There are no treatments or trials left at Siteman Cancer Center for Hodgkin‘s, save for some uncouth drugs used for Non-Hodgkin’s- no guarantee they would work for my cancer. I basically left the office without a plan, and that is an awful feeling.
Thankfully, the internet is a wonderful tool, and Terry and I have been doing our research to find any promising clinical trials out there. The good news is that there are several in other states. The bad news is that I have Medicaid through Missouri, useless in the rest of the country. We will have to pay out of pocket.
MD Anderson in Houston seems to have the most promising trials for Hodgkin’s and I qualify for several of them. However, they will not accept the scans, biopsies, and the like from Siteman as they have different protocols. I would have to redo all of these tests. They were so polite to us, but the bottom line is that since I have no credible insurance we will have to pay $41,500 up-front as a down payment, with no option of a payment plan or financial aid through their facility. Once in a clinical trial, though, treatments will be free.I have a wonderful family, and they have managed to raise about half of what is needed (thankyouthankyouthankyou). That still leaves a large hunk of money to raise. I am hoping to raise this by the end of the month so I can make sure not to miss trial enrollments and so the cancer doesn‘t have time to spread. If anyone reading has any knowledge of charities, organizations, or even generous wealthy folk, I would greatly appreciate any suggestions.
This is a huge blow to me and my family. At 24, I should not be worrying about these things. I am still convinced there is a drug to cure my cancer, as scientists have been doing some cool stuff lately with Hodgkin’s treatments. My oncologist has faith in the clinical trials at MD Anderson and said they would probably be my best shot at recovery. Like I said before, I am physically feeling good and my tumors are still pretty small, so I have time to gather a plan together. I don’t want to put on a brave face and lie that I feel fine, but truly I have not lost hope.
Take care, all
Rachel
I’m so sorry your treatment is not working. I had a similar conversation with my doctor at MDA a couple of weeks ago…the tumors are growing and the trial drugs did not work. I hope you get to have treatment there though…it IS the best hospital for trials, I think. They just have more going on there…more to offer.
Hang tough…not having a plan is probably the worst feeling ever! You want to feel you are moving forward. I will pray that you get the funds to travel to Houston and get into a trial that will do you some good.
Take care.
Teresa
Posted on I agree you should be looking for money to go to college or buy a house but not save your life. I agree with Teresa as both of us have had our MDA experience, if there is something that will work they know about it. I also went through redoing all my tests because they want their own to work from. Please know your in God’s hands and you have people praying for you all over the world. Sharron
Posted on hi, rachel. i am so sorry to hear that your current treatment is not working. damn cancer! if i were rich, i would give you the money to go to texas and get the treatment you need. i wish oprah would see this blog and offer some of her millions or billions of dollars to help. or donald trump or someone like that who has more money than they could possibly ever spend. anyway, i am praying for you everyday. hang in there and keep the faith. debby
Posted on Do you have a Paypal where people can donate? Are you doing any fundraisers in your community?
I have a blog with 300 followers and also know two women who have blogs with 1000’s of followers. I might be able to get a post up about you there, if you have somewhere to donate?
Maggie Mae-
I don’t, and actually am not sure how to set that up. I’ll try to hunt it down in this website, or perhaps someone will read my comment and point me in the right direction? It feels weird asking for money from people who are basically walking in my shoes themselves. Oh, to be an heiress!
Posted on I meant Maggie May, I’m sorry!
Hi Rachel,
Thank you for you comments and support. I realize you are going through a lot right now, and the last thing you need is somebody preaching at you. I am sending you the list of the absolutely essential 15 supplements that should be taken in conjunction with any of the treatments you have endured. I get carried away with my supplements. I personally take 28 every morning. You don’t have to get that crazy though. Also, please have some cereal or oatmeal prior to taking the supplements. It will allow for better absorbsion, and you will avoid nausea.
One last thing…DO NOT BUY RETAIL…ALWAYS PURCHASE THIS STUFF ONLINE. There are a million different sites. The supplements I listed come to about $1.50 per day when purchased online.
Here is the list;
Calcium
CoQ10
D-Limonene
Echinacea
Goldenseal
Mangosteen
Omega 3 Fish Oil
Pau d’arco / Lapacho
Perilla Oil
Selenium
Spirulina
Resveratrol
Tocotrienols
Turkey Tail Mushroom
Zinc
Love, and God Bless!
Larry
Posted on 
Thanks for your support -
Start spreading the news… I’m leaving today… I want to be a part of it… New York, New York!
I’m proud of you, Rachel! You made a great choice and I’m sure this will be the last stop on this gravy train. I look forward to seeing you on The Sartorialist, walking your pooches in Central Park while wearing sassy scarves and large sunglasses.
Supportive Sister
Hey Rachel,
Congratulations on the abundance of great news. New York will prove to be a place of great healing. I wish you all of the best and continued good news.
Be well.
Jill
This IS good news! I’m so glad that Sloan Kettering is willing to work out some kind of plan for you and that you are going to see the doctor so quickly. Keep us posted on your search for an apartment in the big apple.
Know my thoughts and prayers are with you.
Teresa
Great news, I know that it is a huge cost savings when you don’t have to repeat all of the scans.
I love MD Anderson, but it does drive my brother crazy when he has to repeat every test. He is a survivor, Anaplastic large cell lymphoma, after stem cell transplant 7/05
God bless you
I love New York!
karen
hi, rachel. i tried and tried to read your post the other day, so i was very relieved to see it today. i am so happy for you… i know you will get wonderful treatment in new york. it has always been a belief of mine that everything happens for a reason… your cure is in new york. it’s not in missouri, and it’s not in texas. it is waiting for you in new york. thank God you were able to iron out all the details so quickly. have a safe trip there and please keep us posted frequently on your treatments. and, if you don’t mind, i have often wondered what the difference is between hodgkins and non- hodgkins lymphoma. maybe i should google that sometime. take care and i am here in illinois praying for you. debby
I don’t know who your cancer thinks it is, but this is the part where you kick it’s ass. I mean it.
Win this thing!
Hmmm…
That’s interesting. I don’t mind telling you that I was on anti-depressants for nine months prior to being diagnosed with stage IV cancer, actually thinking the cancer symptoms were symptoms of depression and anxiety (I had an ignorant, albeit well-meaning doctor at the time). I don’t see the evidence that they helped my particular case. Thanks for that tidbit, though. I will take a look at those sites.
...I don’t think I’m depressed.
Dear Rachel; Well New York sounds pretty great to me. I am amazed at how fast you were able to turn your destiny around. Shows what a little hard work and persistance can achieve. The fact that you don’t have to repeat all the tests or atleast most of them, is a sign, that the hospital is not into wasting your time or there’s. I wonder what treatment they have in mind for you? Well it’s up to you to keep us informed. Wonderful news and you even get to start a whole new life in the process. You are one lucky lady.