Round Two Delayed

Steve was supposed to be admitted to the hospital yesterday for the next round of chemotherapy, but his platelets are still too low to get treatment. The platelets, which are climbing,  have to be over 100,000 and he has 67,000. We'll try again on Monday.

He's also very anemic, which apparently isn't a factor in receiving more chemotherapy. But despite all that, he's feeling pretty good, and though a little disappointed yesterday to not get on with things, he's glad to have a few more days at home while he's feeling better. It's good to finally a week without chemotherapy or blood transfusions.

He's gotten a better handle on the nausea with the use of drugs and home remedies. It's hard to say what is causing the nausea, and we were wondering if it was the clinical trial drug, Dasatinib, which he has to take for a year. I did some research on the internet about Dasatinib and his particular type of core-binding AML and was excited to read that there have been many clinical trials already that have shown really good results with this drug and killing those bad cells. Given that, Steve said he will certainly will continue to take the drug, even if it causes nausea.

Thanks for your emails with your favorite hemorrhoid remedies -- and what was particularly interesting was that all the remedies were different. Who knew! BTW -- those remedies worked!

To all you FOGS -- you are the best -- thanks for getting us through this!




Visualize Platelets! They are the smooth round red cells.  Normally, platelets look round and smooth, but when they get busy plugging up cuts and wounds they become spiky and ragged around the edges.

Exciting news!

Finally something to celebrate! Last Friday we were expecting Emily for dinner, and when she walked in the door she said, "I hope you don't mind that I brought my fiance for dinner!" In she walked with Dustin, both of them laughing and smiling big grins at each other. That day Dustin had just asked her to marry him and gave her a very pretty engagement ring -- and she said yes! Fortunately we had a nice bottle of French champagne in the fridge and toasted the happy couple. It was a fun, joyous evening at our house. The wedding will be in the summer of 2014. Dustin is a wonderful guy and we warmly welcome him into our family (not to mention he's good with a chain saw -- which has been a big help around the homestead these past few months!) Emily, Mia, Dustin and I are in full wedding planning mode -- such a fun thing to focus on these days.

After having the weekend off, Steve and I were back to work on Monday with every-other-day blood work in the mornings, and blood transfusions in the afternoon. This has been the case for the almost the past two weeks. But today Steve had some good news. His Absolute Neutrophil count is 1000, which means, with the return of the infection-fighting cells, he can stop taking the prophylactic antibiotic and anti-fungal drugs that could be contributing to his persistent nausea. Also his risk of contracting infections is much less. We are hoping that this also signals a return of the platelets and red blood cells, which are still quite low. Just in time to be whacked again on January 30.
He's not only working, but apparently he's in training. The research nurse Kathy told him that the work his body is doing is the equivalent of running a marathon.
While his body may be working out, his work-out yesterday consisted of a quarter-mile walk. Fortunately he remembered to change out of pajamas this time for a walk. A few weeks ago our friend and neighbor Wendy saw him walking on the West Rd. in the frigid cold in his pjs and thought he's surely gone off the deep end.
"I'm feeling better than yesterday," he said this morning, but by this afternoon, I think the sleepy guy would deny these sentiments. But despite the daily slog of dealing with fatigue, nausea and hemorrhoids (yes, it's true -- pleae, post your favorite H treatment), he has a good appetite. When Steve ran his energy business, EES, he had only one company policy: never miss lunch. And now in his "new job" he continues to follow this policy. Last week he baked a German chocolate cake, which he and I managed to devour in three days, and he has become a fan of miso soup, which he makes when he feels a spurt of energy.

With three more of these high-dose, consolidation chemo treatments left, one of us is surely going to go off the deep end -- just look for us walking around in the snow in our pajamas.

Hanging in there . . .

All is well here. I've been getting some nudges about not knowing what's happening so it's time to update. Really nothing new to report, thankfully. Steve has had some ups and downs with nausea and fatigue but he's figuring out a few things out with medications to help alleviate the chemo side effects.
As a result, last week went pretty well even though we had to stay home most of the time. However,  it actually was a fun week with friends stopping by to visit and bringing us good stories and news of the outside world, making us laugh. This is key to our mental survival! I have been getting out a bit more than Steve of course . . . I have to get my therapies: playing in the snow, tennis, seeing friends.

It's great that Steve has the nausea under control, but this week is the most dangerous week with dropping blood counts. He had a blood test today and all his blood values are low and will continue to drop. He had a platelet infusion today and last Friday. The normal platelet count is 110- 400; his is 7. Little red spots are showing up on his body as a result of the lack of platelets. His white count is a lot lower than Friday, so we are doing extra hand washing (and hand wringing.) What else can we do??  It's difficult to say when things will turn around, but hopefully by the end of the week.

It's a little freaky and scary to be home with so many landmines to avoid. Though being in the hospital was no picnic, at least they were ready to pounce on the complications that resulted from the low counts, like infections. Now we have to be the ones to be extra vigilant.   Sometimes I just want to collapse on the floor from the weariness of it all.  I'd like to take the Rip Van Winkle approach: wake me in April. Steve is steady, and doesn't get rattled too much by it all, but I see that he is sad too.

But he keeps telling me that he's coming back, and I believe it.

One down, three to go

Steve came home from Maine General Hospital in Augusta this morning after completing the first of four courses of consolidation chemotherapy. He has a few weeks off until he has to return to the hospital for the second course of consolidation therapy on Jan. 29.
He's pooped and not feeling too well from the chemotherapy. He has some stomach pain, the same discomfort he suffered last month during chemotherapy. At least this time he knows that the pain won't last.
Otherwise, the treatments went well without any serious problems. Hopefully he'll be up for some visitors. I know he'd like to see his friends, so please stop by. Usually he feels best in the morning and late afternoon/early evening. I think once this stomach thing resolves itself, he'll start to feel better. Fortunately his back is better.
The best thing is to call me and see how he's feeling that day. His white count has not started to drop yet, but he still can't see anyone who has a cold etc.

Mia goes back to Boston tomorrow. I'll miss her company.

Here we go again . . .

Steve has settled into room 470 at Maine General in Augusta. It's a a very different scene here than on the bone marrow transplant/oncology pod at the Brigham and Women's Hospital where it was pretty stressful -- sick patients, freaked-out families, like us. 

Of course things are different this time -- Steve isn't acutely ill and we've had a month to adjust to dealing with leukemia. We are less stressed, maybe. 

But not only that, in the Augusta hospital it's quieter, and the sun actually reaches inside Steve's room. Outside there are only a few cars that go by, unlike the war-zone feel of Brigham Circle with a constant stream of ambulances, police cars, fire engines, and the occasional helicopter. I don't miss it, except for opportunity to drink the good draft beer at the local pubs with my family and friends from around Boston. But really, it feels so good to be home. 

From Steve: 

"My room is quiet and nice.....so far so good. I had a lobster roll for lunch! It's on the menu here. Gina is bringing spicy Pad Thai from the Thai restaurant tonight.

The pump is almost finished with the first dose....not sure when the side effects will begin. Nausea and lack of appetite are high on the list so I am eating a lot while I have an appetite."

As he said, so far so good. It is more than a little scary to be starting this high dose chemo again and wondering and worrying about side effects and complications. Steve was practically a poster child with the way he tolerated the treatment last month, according to his doctors. Hopefully he can maintain this coveted position! I'll keep you posted . . .

Happy New Year!

Steve will be ringing in the new year with a new phase of treatment. Tomorrow, Jan. 2, Steve will be admitted to the Maine General Hospital in Augusta for five or six days to begin his second phase of treatment. He’ll receive chemotherapy every-other-day: Weds, Friday and Sun. Then, he’ll come home and recover for three weeks and then do it all again. It’s very possible that he’ll develop fevers due to the chemo lowering his white count and have to be readmitted at times to give him antibiotics.

We decided that since this phase of treatment requires a lot of inpatient and outpatient visits, we wanted to be closer to his doctors and treatment facility. His doctor in Boston was very supportive and encouraging with this decision. We like the staff at the Harold Alfond Center for Cancer and glad they'll now be leading up team buxie. 

It is a big relief to both of us to not have to make frequent trips to Boston during the winter.  

He received the results of his bone marrow biopsy, and it confirmed that he is in remission. The work ahead during the next few months is to keep things that way.

Unfortunately Steve strained his back last week moving a couch! He was feeling so fit that he decided to surprise me with an extreme makeover of the tv room/office space. But he didn't take into account how much a month of laying around a hospital bed weakens your muscles. This setback has been a hard thing to deal with especially since he was feeling so well and knowing that soon he will be back on the chemotherapy.

But he is feeling and moving better now.

Wishing everyone a happy and healthy new year. I won’t bother with clichés like if you have good health  . . .  it goes without saying!