Hi. Found out today that Stanford will still consider me for a transplant with my current profile and results. Very surprising and good news.[...]

Hi everyone. Just a quick update. I found out on Friday that, unfortunately, the biopsy results showed no change in my cancer after four rounds of chemo. Needless to say, this has been pretty depressing, and I’m still processing the news. The cancer’s not worse, but it’s also not better. Big next steps like a transplant are on hold until the disease shows that it is responsive to treatment.
 
The doctors have decided to change to a different chemo cocktail called Jakafi that focuses on the myelofibrosis rather than the myelodysplasia. From my quick Google search (of course), it looks like this will be a pill rather than an IV or shots. I'll find out more, and the new treatment will start later this week or next.
 
Please keep fingers and toes crossed for a holiday miracle.
 
Love,
Joanne[...]

Hi everyone, it’s Joanne. Sorry that I’ve been MIA for almost 2 months. First, I waited for the Stanford meetings, and then it’s been a slightly bumpy health ride the last few weeks.
 
I’ll keep this brief – mainly because I’m pretty tired these days, without a lot of red blood cells or hemoglobin to keep me going. And besides, who wants to read the War and Peace of day to day cancer care. Yuck.
 
On the positive side, I’m still handling chemo pretty well, all things considered. I finish my fourth round tomorrow, Tuesday Nov. 20. They have learned how to control most symptoms like nausea with magic pills. The one side effect they can’t really control yet is fatigue, which is compounded by my disease itself and a pulled groin muscle. (Note to self: save working out for after I’m well.) I’ve also had a few short episodes of fever and chills.
 
Consequently, I’m pretty much a couch potato these days, aided by blood transfusions about once a month. Today was a chemo and transfusion day which should help me feel energetic enough to represent at Thanksgiving. I’m finally starting to need assistance with grocery shopping, laundry and changing sheets so frequent house guests have been helpful. 
 
Next week, I’ll have another bone marrow biopsy which will determine whether I need more chemo or am ready for a bone marrow transplant. The results should be available in early December. I’ll try to post something then.
 
The meetings at Stanford were perhaps predictably depressing. From a legal perspective, nobody there is going say something like, “You’re a great candidate. We have great hopes for your full recovery.” Instead, they just laid out, without any emotion, all the terrible risks and side effects associated with the procedure. Someday, the possible effects of the massive doses of upfront chemo, the graft/host diseases and survival rates will sound medieval – but not yet.
 
I just need to listen to other doctor friends who can tell me that I’m a great candidate and should do well. And, when the time comes, I will be asking all of you to send good thoughts and prayers at very strategic times.
 
The distilled version is that 1) a very preliminary search has turned up a couple of promising matches; 2) I will need to move down to Stanford for 3 months (assuming no complications) – about one month in the hospital and two months in a nearby apartment with a full-time caregiver and a WWI-like gas mask; and 3) the very earliest that the transplant could take place is January, although I’m assuming it will be a little later.
 
So, anyone who knows either a possible house sitter for Larkspur and my cat Sam or a place to stay near Palo Alto, please let me know.
 
But, for the moment, I am safe and secure on the couch with Sam in my beautiful little house.
 
One more thing: many of you have asked whether to call, when is the best time to call, etc. etc. Here’s the short answer: CALL! Whenever you want. I love hearing from you. I’ll tell you if it’s a bad time and call you back.
 
Love to all of you, Joanne[...]

Hi all, it’s Joanne. It’s been a month since Kelly’s journal entry so I figured I needed to step up and give an update. By the way, huge kudos to Kelly. A month ago, I was still in too much shock to write anything. So, she managed to create this site and craft that beautiful description based only on my second-hand ramblings. There’s a reason the girl has been the VP of Marketing Communications for a number of companies!
 
Yesterday was the last day of my second round of chemo, and I now have a break for 2 ½ weeks – yay. Can’t exactly break out the champagne, but it does give my body a chance to heal and settle down. I’ve generally been handling chemo quite well apart from the normal fatigue and fuzzy brain. I get 3 shots a day in my stomach for 7 days. The big benefit is convenience: I’m in, I’m out. The downside is a sore tummy. I’ve suddenly become a big fashion proponent of pull-on pants.
 
No news on the transplant front. Supposedly, Stanford is already looking for a match, but my first meeting there isn’t until October 31. Yup, Halloween. Ignore scary stories, look for the trick or treat candy (despite swearing off sugar.)
 
Thank you for all your posts. I’m a bit overcome by them but very appreciative. It’s like the thrill of yearbooks, but we’re all so much more articulate.  🙂
 
If you’d like to help, I’m looking for reading suggestions. Fun, diverting, take-you-away type novels. Right now, I can’t handle anything too intense, sad, scary or political (which today is all of the above.) For those who have read them, The Night Circus and Crazy Rich Asians are about the right speed…
 
I want to thank 3 groups, in particular, so far on this journey. First, the doctors, nurses, social workers and psychologists at Kaiser Permanente San Rafael. I was a happy Kaiser member before. Now, I’m convinced that they are the best run health organization in the country.
 
Second, my heart extends to my pit crew of close friends, brother and niece here in the Bay Area who have carved out extra time to call, visit, arrange dinners and conduct research despite their busy, still-working lives. When I make it to the other side of this, a key blessing will be that we’re even closer than we were already.
 
And third, many thanks to my deeply experienced energy healers, one in Hawaii and one here. I’ve been getting healings at least twice a week since this all started coming down. At minimum, they’ve eased my treatments and given me hope and optimism. At best, maybe a miracle! Ping me if you want to know more.
 
‘Till next month.[...]

In August of this year, Joanne was diagnosed with two rare blood diseases and a very challenging prognosis for recovery. Surrounded by friends and family, Joanne is now embarking on the difficult and medically-daunting road ahead. To help support Joanne, we decided to create this site as a place where we can post updates on her progress, help coordinate the everyday logistics, and offer her support and well wishes along the way. She has a lot of love wrapped around her, and knowing that makes a huge difference![...]