Tuesday, March 1, 2016

A whole new road

As so often happens, the relatively smooth road that we had been traveling, that we had fought so hard to get back on, developed an enormous sinkhole. We are on a whole new road.

We made our move to Utah in August, a move that we had wanted to do and had been planning forever. A few months after we got here I noticed a small lump in my neck, near the place where I had a positive node in 2012, but not exactly the same spot. I went to urgent care, not having a Dr.  here yet, and she found that I had quite a few swollen glands due to some strong congestion (not uncommon in the mountains and high altitude). I watched the bump obsessively and it didn't get larger, actually reduced slightly. We got on with our new life, exploring our new surrounds, Jack starting kindergarten, getting the house in order. Sometime in late October I noticed that I wasn't able to eat as much as I used to but didn't pay a lot of attention to it. In mid November some stomach and kidney pain developed which sent me to a GP, who tested for H pylori and a few other things. But one night the pain got so bad that it sent me to the ER and it's there that the sinkhole developed. After a rather distressing CT scan and ultrasound were done, I found myself being transferred by ambulance to the cancer center in Salt Lake. I had what you could say was a pretty explosive recurrence of cancer, and I was now a Stage 4 breast cancer patient.

What does Stage 4 mean - because I know many people, sometimes even people who have had cancer, don't understand what it means. Stage 4 means I, as of right now, am treatable but not curable. I will be in some sort of treatment for as long as I live. There will not be a time, more than likely, when treatment is over. The numbers are not good. There are people who live 10-20 years with Stage 4, but that's not the norm.

So where does that leave me now? Three and half months later this is what reality is. I'm going into my 14th round of chemo. I had a scan in late January which showed either complete resolution of tumors or significant shrinkage of tumors, which is great news, but in Stage 4 land you take everything with a grain of salt because that all could change on a dime. I am responding very well to treatment right now but I feel like shit a lot of the time. I have almost no energy but I'm trying to get it back. This is nothing like last time where I had almost zero side effects and was able to take care of the kids and myself  95% of the time. To be honest, I have started writing letters to my children, I have outlined parts of my funeral. But I am also working very hard to just start talking it day by day, to look at things with a more positive mind set - that I AM responding well right now and maybe that will continue, to be like that one lady who "turned 18 months into 18 years". It's not something she did, it's just something that happened, so I'm trying hard to believe that could be a possibility.

How do you face this when you're 41, when you have a 5.5 yr old and a 3 yr old? I'm still not sure. I remind myself every single day that everyone alive has a terminal condition - life- and that no one, anywhere, is protected from anything.

Due to my diagnosis, and the amount of treatment I need, we will be moving back to California this month. As beautiful as it is up here and as much as we love our house, it's hard to be sick up in the mountains, when your hospital is 25-45 minutes away depending on the weather. Again, one step, one day at a time on this new road.

2 comments:

  1. Oh, Jamie. I'm so sorry you are facing this beast again. Not that it ever really leaves, one way or another. Thank you for posting; I've followed you since early 2013 when we had little babies and cancer treatments at about the same time, and while I do not like this news one bit, I want to thank you for posting and giving the update. I wish I could help.

    I feel really incoherent, but just wanted to let you know that someone out in blog land is thinking of you and sending virtual hugs.

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  2. I'm sorry that you are now dealing with stage IV disease. I am, too, unfortunately. If you are open to the idea of clinical trials, please check out this link:
    https://clinicaltrials.gov/ct2/show/record/NCT01174121
    I participated in this trial over the summer, and it is working--my tumors are shrinking. It is open to many different cancer types. I blogged my experience here:
    cancerRiot.blogspot.com
    I wish you my best hope and prayers for healing and peace.

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