Best Laid Plans

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I just want to say thank you to all the lovely people reading the blog and commenting. It is so nice to have you join me in this. When I write I usually pretend no one will read it so that I do not censor myself too much. I feel very fortunate to have such a fine group of people supporting me and encouraging me in this. I feel blessed and strengthened by your prayers and love.

I am feeling far less anxious then I was for quite a while. Everything with my treatment seemed so up in the air. Now I have two strong plans. Both seem well thought out and I have confidence in their ability to aid in my recovery.

Plan A: http://147.52.72.117/IJO/2006/volume29/number5/1053.pdf. This is the most recent medical journal article about Rexin G. The results seem very promising.

For me Plan A is still the Rexin G study. Here is what I(God really) have been able to put together. Kelly’s Grandma Wilma and her husband Lawrence were head of the Salvation Army for most of their adult lives. Wilma lives in Southern California. And her nephew now heads the Salvation Army there. She felt that they might be able to assist me in some way. I think if I get in..and that is indeed a big IF… I will try to put together a detailed list of things we will need. I am looking for a place to stay for cheap or free while there so that my expenses are low. I plan on trying to find housing right in Santa Monica so I will not need a car. An expense I can not afford. I have found out that I can get free transportation to and from the facility for treatment. I can get California medical assistance after residency  is established. That will cover my blood work and tests during the time I am in the study. But the rest is still somewhat unknown. I am trying to just do this one step at a time.

Plan B:

Plan B is staying here in Philadelphia and doing the standard plan of care for someone in my situation. But my situation may have changed from what I was initially told. If you remember I was told that my bone scan and cat scan came back negative for cancer in my bones. But the pet scan came back positive. It turns out that pet scans have a very high false positive rate. Further, all the places that I am told I have bone cancer may in fact be lymph tissue and not bone at all. This is an entirely reasonable possibility. But still just a possibility. It is my hope of course since even though I would still be stage 4, because of the metastisis in the neck a lymph nodes throughout my body, it would be possible for me to become N.E.D. (no evidence of disease). So plan B is this.  1) I finish my next two chemo treatments.  2) I am re scanned. And for the first time I will get an MRI of my sternum to assess whether it is bone or lymph cancer.  3) I will get a double mastectomy. 4) I will get radiation. 5) I will continue to get herceptin for a year. This is because I am Her2+. This will be done every three weeks via my port. 6) I will also get tamoxifen which is another hormone treatment since 90% of my cancer is hormone driven.

So I still have a long road ahead of me in terms of treatment. The biggest risk is recurrence which happens very frequently with IBC patients. Often within the first 24 months. One day at a time I feel it will be whatever it is supposed to be. I am not afraid or unhappy about the prospect of either treatment. I prefer the Rexin G. But I may get the surgery after the Rexin G study anyway. It is really superfluous right now though. My main goal is to just be happy today. With whatever God chooses for me. If you pray…pray for God to heal me. Pray that my cancer is not in my bones. Pray for world Peace and that we send our troops home from this awful war. Pray that we treat each other like friends not enemies. Pray for more love and kindness to pass between us than bitterness and anger.

Thank you all so much for listening. Wednesday is chemo. Only one left after that. One day at a time. I am feeling hopeful about the future. And yet still trying to just accept God’s will in my life. I do not want to make things happen by my own will. I am feeling God’s movement in all these things. I hope you feel His presence in your life as well.

Much love to you all. Andrea

5 Responses to “Best Laid Plans”

  1. Tim says:

    My partner is seeking to enter the Rexin trial in Santa Monica and we have an appointment at the Sacoma Oncology Center in Santa Monica next week.

  2. the other naomi says:

    they call it medical practice because they’re still practicing. i pray that the tests come back negative for your bones, call me after the big sleep if you get time, kiss all the kids for me, especially the alien baby.
    xoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

  3. Wendy says:

    I finally printed out the Rexin G PDF file. I promise to go over it until my brain bursts. I’m praying that God will give you and Kelly wisdom and a clear direction. I am praying for what is BEST for you & the family – open doors in the trial or closed. Karen and I have talked and I am keeping a day open to see you assuming you feel up to it when you come to CA. I wouldn’t miss it for the world. Hang in there. Happy Chemo Day tomorrow. I’ll be praying for you. Hug Kelly and the kids for me.

  4. Sylvia Heinze says:

    Dearest Andrea,
    My favorite son Adam sent me the link to your blog tonight. This is my first time to read or enter anything in a blog. I have prayed for you, Andrea, often since my kids- Adam (Tara) and Rachel (Ryan) shared with me about your illness. I am a nurse and have credentials in oncology. I am so impressed by your spunky nature to take charge of your situation while grounded in your faith and family. Jeremiah 29:11 comes to mind, a verse that has held special meaning for my husband and I for many years.
    Fondly,
    Sylvia

  5. Jennifer says:

    Hi Andrea,

    I am starting on Rexin G tomorrow, Tuesday 9/4, at Dr Chawla’s office in Santa Monica. I am person 3 in the first cohort of 3. I have pancreatic adenocarcinoma with liver mets and have gone thru 3 chemo combos that have failed. On the bright side, I am almost 2 yrs since diagnosis and I am still here and feeling great. Tim (above) came down to SoCal with his partner Jeanette and did not get in because Jeanette had not failed her current chemo, only gotten sick from it. This was not listed in the trial criteria. Another piece of info not in the criteria– you must have a measurable tumor over 1 cm. Please, if money is an issue, get on the phone with Vicki in Dr Chawla’s office and go over all the criteria with her so there are no surprises, and you don’t make a trip for nothing. Sorry, I just got back from traveling so haven’t the energy to thoroughly read your blog, but I saw somewhere you are still on herceptin. I do not know if that would be counted as a chemo, but you must be off all chemo (and maybe other anticancer agents?) for a month before you can start Rexin G. Pre treatment, you will have urinalysis, blood work (including HIV/AIDS and hepatitis tests), a chest x ray, and a PET/CT. Epius will pay for the PET/CT but your insurance will have to pay for the chest x ray. Once you have these tests and are still qualified based on the results, they want you to start right away. I am not sure when the next cohort starts (Tim and Jeanette said 40 days) so if you come this week and they are not ready for you to start you will have to come back. The inital protocol is 2x a week, 4 weeks on, 2 off. They will rescan after 4 weeks. If you get in and the Rexin works, you can stay on in indefinitely.

    I am very fortunate in that I live in Pacific Palisades and am about 15 min from the clinic. Unfortunately, rentals on the west side are very expensive. I suggest you look for a guest house at someone’s home, perhaps on Craig’s list. There are also tons of rentals on westsiderentals.com. I think it’s about $40 to get access to listed properties. I found my rental condo this way. Santa Monica was rent controlled until 1999 and there are still a lot of renters grandfathered in who live in big apartments and are not paying a lot of rent. (I had one of these apartments until I moved to the Napa valley 4 years ago.) If someone who still has rent control wants a roommate, that would be good because the rent shouldn’t be much. I don’t quite know what to tell you about the car. Even if you are only 1/2 mi away, you may not feel like walking some days. I would be happy to pick you up from the airport and give you rides if I am around– I work out of my house. However I am going out of town Fri thru Mon.

    Let me know if you have any questions or if I can help you. My email is luckygirl2@mail.com.

    BTW, I had infiltrating ductal carcinoma of the breast 12 years ago. I had surgery, chemo, and radiation. I have since discovered that I have a defective BRCA2 gene.

    Jennifer