SBJ: sweet baby Jesus folks, here we go again....

Beloved friends and family, it is with a heavy heart that I tell you this and take you down this road with me again but god am I glad to have you.
Yes folks, it's back.........bloody hell.
Digest that for a minute if you will and I'll tell you a story.
All was peachy as far as I was concerned, I had the cancer licked, the hair was growing like mad, my energy levels were improving and I felt stronger than I had in months. I went home and saw friends and family and everyone was delighted to see me looking healthy and in good form. During that trip home I had some pain in clavicle area of my chest and shoulder and thought it was a side effect of radiation, but it kept getting worse to the point that the pain of it woke me up every night. I noticed a pea sized node just above the clavicle bone and thought oh Jesus, please don't let that be what I think it is. To my horror the lump tripled in size over the four week period till it was actually noticeable and protruding from my neck. I was really hoping it was lymphodema or radiation fibrosis but deep down I had a sinking feeling and tried to keep it at bay, I contacted my team here in SF and was seen as soon as I got back.

I went in there on Monday morning half terrified, half hopeful. My favourite nurse practitioner took one look at my neck and got out her measuring tape (oh god....) then she called my Oncologist to come up and see it for herself (oh shit...) Then she looks at me and says "honey... I hate to tell you this but I think your cancer is back"..... my heart sank and my head dropped, my oncologist concurred and I just wept, we all cried, they held me in a group hug as the gutting reality sunk in, how the hell could this be happening....

After a very shaky morning where I cried right through my labs and biopsy, I drove out to the beach and yelled and screamed, then went about the horrible task of calling friends and family and dropping a bomb on their world once again. It's been a tough week, I absolutely hate telling people, my heart drops seeing the sadness in their eyes and hearing the devastation and worry in their voice, knowing that we have to go through all the stress and worry again is just, well, there are no words.

From the initial meeting on Monday they felt at least two tumours, above and below the clavicle on my right side where the previous tumour was, the super clavicular node just above was measured at 4cm x 3cm, the one below about the same. They ordered a biopsy and full body PET scan to see how extensive the cancer was. I asked them to give it to me straight, no bullshit, (Oncologists can be like lawyers, never really giving you a straight answer and dancing around tough questions with carefully chosen words). Basically, if the PET showed that it was local, they could probably cure me again, but if it had spread to another part of the body or organs, we were looking at metastatic stage 4 and the prognosis was not good. It took them four long days to get back to me with the results, by Thursday I was going mental waiting and had to distract myself with ridiculous projects like dyeing a duvet cover and whipping coconut oil into a cream to keep my mind and hands occupied....

Finally they called and the results are both good and bad: it is a local recurrence, (the same rare and aggressive triple-negative lobular cancer, recurring in the same area, just a little higher) meaning it's nowhere else in the body, no lungs, liver or bones affected, good news. It is however, extensive in both my chest wall and the nodes in the upper breast area, with two to three tumours around the clavicle, the one you can actually see at the base of my neck is a concern to them because technically that's spreading out of the breast area, that and the fact that it came up so fast, it's size and cellular activity is why they are staging it all at stage 4...... That was hard to hear, as a cancer patient you really dread that number, it's loaded with fear and memories of those we have loved and lost.
With these results, I asked her if she still saw this as curable and she danced around the question. The thing is, is that they just don't know, they are still chasing cancer down the street and haven't fully caught up to it, there are many aspects of the disease that elude even the most prominent oncologists, it really can be a bit of a guessing game as to how a patient will respond and why. Mine remains hopeful that I will respond positively to chemo like last time and that the tumour will shrink into something they can easily remove with surgery, I'll take that optimism and run with it.
Treatment wise it looks much the same as last year, without the planned and structured time frames. This time it's more of an aggressive attack plan, then wait and see. I begin weekly chemo this Wednesday and I'm probably looking at another 5 months of that and maybe more if I don't respond, then surgery, then possibly more radiation.....good times. I am to do another double-whammy of delicious 1970's chemotherapy drugs, the stars this time being Abraxine and my old friend Carboplatin, lovely vintage, great nose with a long smooth finish....hmmm can't wait. Carbo worked a charm last time so let's hope for a repeat performance.

As for me and my heart and mind, I'm doing ok, well better than ok considering, a weird calm has come over me that I can't explain. This week has been exhausting, heartbreaking and stressful and I'm glad it's over, now I'm just accepting and getting on with it as best I can. Friday was the 4th of July here and I decided to spend it with good friends and have a laugh instead of wallowing at home. The picture above is of me and my dear friend Phil in a three-legged race crossing the finish line (it was a rematch but technically we won the first time too ;)) ....so you see, I'm my usual self, I have energy, I look healthy and I've got plenty of fight in me .......
I've decided that I'm not accepting this stage 4 shaky diagnosis, not in a denial sense, more like defiant. I do not agree with my team when they say they may be chasing this one for some time. I believe that my attitude and spirit had as much to do with my remission last time as the treatment they gave me. I have been blessed with a strong heart and a deep knowing that what you decide will be, will be. Well I'm not going anywhere and don't you believe otherwise, if we learned anything from last time it's that I'm a stubborn, determined lunatic who will not lie down..... (but I will lie down and rest when I need to, promise ;)) Whilst the thought of the next few months is daunting, I have the experience of last year under my belt now, I know what's ahead of me and I know I can do it again, maybe even better this time. I have an extraordinary team of doctors, nurses, acupuncturists, TCM practitioners, sound healers and Reiki masters who care about me and want more than anything to see me well, they got me through it with flying colours last time and they are by my side once again. My dear friends here and family at home have swooped in around me, pledging once again their undying love, support and help and I am beyond grateful to you all for making me feel loved and supported, with your help I can do anything. You blow me away with your patience, tenacity and huge hearts, what would I do without you ?? Be screwed that's what.

Well loves I think that about covers the story so far, I know you're worried and it's perfectly natural to be, but instead of worrying, I would rather you sent me love and healing wishes instead, it reaches much farther and does a much better job. So imagine me better, annoying you, laughing with you and thriving, full of the joys with all of this behind me, see that in your minds eye and heart and we'll be there before you know it.
I am blessed to have you in my life and by my side in this and in all things,
All my love to each and every one of you and thanks for listening xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx