City of Hope - New decisions

Thursday we spent the day at the famous City of Hope. It's so strange when you've heard about a place your whole life and then you see it in person. It's huge, very organized, friendly, and it felt surreal.

We met with Dr. Nadamanee. She is obviously an expert in cancer and in lymphomas specifically.

The long and the short of it is that this is a fast moving type of T-cell lymphoma. Most lymphomas are in the B-cells. It is rare so there aren't as many studies. The "Standard of Care" is CHEOP once a week for 18 weeks. This is heavy duty chemo regime consisting of 5 drugs. They are doing clinical trials where they are adding a 6th (with the chance of higher toxicity). Then, when the lymphoma is in remission, they do a stem cell transplant (hopefully with my own stem cells) with a 3-4 week stay at City of Hope. I am not showing "B symptoms" like night sweat and fevers, so we may have caught this early. I also have only 1 of the 5 things that impact the prognosis, which is good. It is not in the bone marrow which is also good. But---we heard information I had already read so it didn't hit me at all. 10 - 40 % chance of remission. If we do all of the above and the cancer doesn't come back within 2 years (it comes back often which is why the stem cell transplant is suggested - to cut down on those chances), then the chances go up to 60 - 70% success of this cancer not coming back. Those numbers were nice to hear toward the end of our 90 minutes or so with the oncologist. Of course, she also mentioned that chemo causes cancer. The assumption being, what choice do we have? She wants me not to wait "too long" to start treatment. She said that if I were her sister, she'd start this right away.

I wrote a text to my kids that I was going to change my plans to now do 2 months of alternative therapies, rather than the 6 months I had in mind going in. By the time I got home, I was down to 1 month before I would submit to conventional medicine. That meant finishing up this school year and jumping into a 9 month process that I DREAD. (4 1/2 months of chemo, a shot to help my immune system recover quickly, about 10 days later they take my stem cells if the cancer is in remission, then they take me to death's door and reintroduce my own stem cells during a 4 week stay at City of Hope in isolation). For something like a year - I can't see my grand daughters, can't look at the house in Colorado we just started looking at because it is too remote, can't work next semester so my retirement will be pushed back by at least a semester, can't can't can't. (These were some of the things going through my mind, along with about a million others.) I push back the urge to feel fear but it is there, ready to jump into my gut any time I would let it.

The pathologist is confirming the diagnosis - again. We hoped for a call before the weekend, but no luck.

But I was given a gift this weekend. A break from the realities.
Beautiful weather. Time with 4 of my simply lovely kids (2 married couples) and my awesome husband, time with my sister and my Caroline (my niece). My family worked together with much inconvenience to make me a sweatshirt with the handprints of all the kids in our family - including the babies in Colorado and my great nieces and nephews. I have new jammies and a blanket made of pictures of my most loving and selfless family. These are all things meant to comfort me as I go through treatments. My 5 brothers and sisters, their spouses and children and grandchildren - how do I describe my awe of this clan? We were born into turbulence - I suppose that is why we fight so hard to be stable, loving, and forgiving for each other.

It's so strange to feel healthy and be planning in your head to need comfort while you allow nice nurses to inject poison into your veins. So so weird! This morning I said something about getting long term insurance when our life insurance policies sunset in a couple years. Then it hit - I can no longer get long term life insurance. It will be too expensive if companies will even issue it to me. Saddness fell like a wet blanket over my insides. I don't know why this triggered it but it did. Cancer has started to take things from me.

One of the hardest things for me to figure out is how to be real with my emotions and acknowledge my real thoughts - while having that positive attitude that seems to be REALLY important in healing. When we were alone, I took a few minutes to talk about my sadness with my hubby and we had some quiet time in our hotel room overlooking San Diego bay (God orchestrated this months ago). A shift happened without me even praying or meditating or trying. As it is usually - God did something great, without my efforts or striving for perfection or whatever. The Holy Spirit that lives in me helped something inside me shift. The wet, heavy, cold blanket over my heart disappeared and we packed up and drove to Starbucks to meet a couple of awesome young people to talk about college and their future - one of my very favorite things to do.

As I've written about earlier, I have read the book, The Cancer Revolution, and am going to the Cancer Center for Healing in Irvine, started by the director, Dr. Leigh Erin Connealy. Several things they do and preach are a bit hard for my mind to grasp and, well, believe make any difference. I have been trying to have faith in it all but sometimes I just need to acknowledge - things like walking around outside before bed to 'ground' myself and get rid of any destructive electrical currents in my body - feels silly, but I am trying hard not to discredit that which I don't understand.

When I ordered more copies of the book online a week or so ago, a suggested book popped up. "Killing your Cancer without Killing Yourself." I bought 2 copies - 1 for my sister who has been dealing with breast cancer for 3 years and who led me to the Hoxsey (Biomedical) Clinic in Tijuana, and 1 for me. After our time at Starbucks, I started reading the book and ended up reading nearly 1/3 of it to my hubby on the drive home. It was like I was reading my thoughts and his story was so parallel to mine. It brought so much together for me.

I have made a decision. I am moving forward and am no longer letting the cancer have such a big voice in how my life unfolds from here. I see clearly that this is a gift. I read a journal I wrote months ago where I said I am living frenetically and I don't know how to stop. I asked God for help. Well....He has answered. I need to be forced to change - for my own good and for the good of others.

Today is all about getting organized and preparing for a whole new life we start tomorrow. I will give this my best shot - implementing all the tools I have been given - with the thought that we will evaluate in 6 months when the Hoxsey Protocol has had the chance to do it's thing, with the assistance of all the rest best practices. I will learn and grow and rest and spend the time alone I need to spend. I will love everyone I love, even if I don't spend as much time with them. I will hunker down at home and not plan trips and things that will derail what I am doing until I am ready. I will take time off work if I need to, just as I would have with chemo. God will take care of the world and he will take care of me too. I am now a believer and will not look back.

No fear. Eyes on Christ.