Bad blood

The day started auspiciously for Steve, with a plate of eggplant and basil takeout from the Taiwan Café in Chinatown.

Steve agreed to let Susan, his nurse, shave his head since his hair is rapidly falling out. As I looked at his reflection in the mirror, I had to swallow hard to see him with so little hair. So much has happened in such a short time. He just shook his head. But Steve is strong and he doesn’t dwell on things that he cannot change. Besides it was time for a platelet transfusion.

A platelet infusion is fast – it takes less than a half hour (don’t quote me). Once it finished, he started having strange sensations in his throat, a sign of an allergic reaction to the blood. Thanks to fast action by the nurses, he got IV medication to reverse the allergic reaction and soon felt better and sleepy; but a constricted throat, puffy eyes and hives are a scary thing.

Despite these events, the doctors love what’s happening to his white blood cell count, which is still falling, indicating a good response to the chemotherapy. 

Feeling a little better

Steve’s tummy feels a little better today and so he was able to eat some of my sister Patti’s pot roast and turkey soup. Then he even had a piece of Penguin pizza for lunch. In between he slept and slept. With some gentle coaxing, he took a short walk around the unit. The nurses almost applauded him.  Then back to bed for more sleeping.

Chemotherapy not only attacks rapidly dividing cancer cells but unfortunately also rapidly dividing healthy cells, like the cells lining the stomach. Thus the doctors feel that knot in Steve’s stomach is from the stomach lining sloughing off.  

Fatigued

“I can’t do anything. I’m so tired,” said Steve.

He spends a lot of time sleeping,  sleeping  off all the overwhelming effects of the chemotherapy.

The doctors say he is doing great, but the chemo is exerting a powerful effect on him from head to toe.

The doctor reminds him that he’s one day closer to the end of treatment. 

Continues to improve

Buxie is feeling better most days. The days he feels poorly is when the nausea is not well-controlled. The doctors and nurses continue to try new medications and different schedules for taking them with some good results. I guess  -- it’s the second day in a row he’s eaten an egg mcmuffin with bacon, Brigham and Women’s style.

His hematocrit is climbing though the platelets are still struggling to rebound. He needed another transfusion of platelets today. ‘They’ are not worried about this, just chock it up the effects of chemo and the disease.  

After a good bottoming out of his white cells, a good thing,  they too are starting to climb. But Steve’s immune system is depleted right now,  so he’s still confined to room 7B – 39, and will be for probably two more weeks.

One week from Tuesday he will have a bone marrow biopsy to see if his bone marrow is free of the bad white cells. Those cells have received a serious spanking so I don’t think they’ll show their face again. But in the event there are a few rogue cells, (as we know, the CIA has been busy with other things and not keeping an eye on rogue elements), Steve will have to undergo another five days of chemotherapy before he can come home.   This would be more like a kick in the pants, rather than a serious setback. They assured us that needing a second round of chemo does not indicate a change in his prognosis. We are banking on NOT needing the second round of chemo. 

Once he is set free, he'll rest up for a few weeks before starting more chemotherapy. We aren't exactly sure about that schedule -- I'll tell you about it later when I know the details.

I have some new digs, thanks to the hospital and Dana Farber. I am sharing a very nice apartment with two other people right across the street from the hospital. Mia and Emily have both stayed with me there – which makes it feel even more homey. The staff here has been so kind and helpful. 

Mia, Emily and I had a wonderful Thanksgiving with the family at my sister Patti’s house in Milton. We brought turkey and the fixings back to Steve in the hospital, which he loved. That turkey was worth the $90 Mary paid for it!

Not to mention that it was so exciting having George Clooney and Madonna join us at Thanksgiving. 

Mia and Emily with my nieces Kellie and Nathalie

                                    The usual suspects crashing the dinner party.

Feeling better

After a rough start, Steve continues to improve. Fewer headaches, no fevers, his breathing has improved and he has an appetite. He gained about 15 pounds of fluid, but now even that is decreasing. He lost five pounds since yesterday. Everyone is breathing a sigh of relief.

Steve’s white count is zero, which is just where the doctors want him. But it does make him prone to catching viruses and other infections. He is on antibiotics and anti-fungals which should catch the bugs before they cause trouble.

The nursing and medical staff are great – they are one step ahead of potential complications, and quickly treat the ones that do crop up.

His IV chemo was discontinued tonight – hooray! Tomorrow he starts on the chemotherapy that is used in the clinical trial, which is a pill he’ll take every day for two weeks. In two weeks the doctors will do a bone marrow biopsy to make sure Steve is in remission.

No drugs to get rid of the fluid, and no blood transfusions today – he feels like he had a day off! He really feels good.

The tree of IV bags has been mostly discontinued.

He has a lot of reading to catch up on. 

Only Two Days of Chemo Left!

Steve has had a much better day today than yesterday. Phew!

He had a CT scan last night of his head and chest to try and figure out why he has persistent headaches and a fever. His head if normal but he has fluid in his lungs which might be pneumonia. He is receiving antibiotics. Maybe the antibiotics are finally starting to have an effect; his headache is less, less nausea, less fatigue. We are relieved to see him feeling better. 

His blood counts are in a free fall. He needed another transfusion of red blood cells again today. Sometime next week his white cell count will be at ground zero – just where the doctors want it to be. The goal is to kill all the bad white cells, but unfortunately to do that you also have to kill all the good white cells.  By day 14 his good white cell count will be rebounding, without any of the bad cells.

“Thanks for all the kind wishes,” says Steve.  “I’m looking forward to having a slice of pizza tonight.” 

 

Steve is getting a lot of IV fluids so they have to give him a drug to get rid of the excess fluid -- just part of the plan. 

“They filled me up with so many fluids that now they are racing to get rid of them," he says. “I don’t even have time to set up the oxygen in my nose before I have to go pee again. I peed a half-gallon this morning."

Every few days there seems to a different group of interns and residents. Steve especially enjoyed kvetching with the intern covering for the weekend. 

“A young intern showed up in my room this morning and this evening. He was very helpful when he came in this evening and very accommodating. I said what’s your name, Kaufman? He started to laugh. He said 'No Goldstein, but close. You can just shout Kaufman or Goldstein and someone will come running.'" 

The nursing staff is great -- very competent and knowledgeable. They treat lots of AML patients here.  They give us answers to our questions and good advice on dealing with the long treatment and hospitalization. They know when to encourage and when to let him be. We really feel like this is a team effort.

Steve’s brother Andy, Emily and Steve. Steve filling in day five of the seven-day chemo chart.

Steve enjoying a slice of pizza from the Penguin in Brigham Circle. Though he couldn't join us (Mia, Emily, Andy, my nephew Paul and niece Kellie and me) at the pizza place, we brought him back a slice. 

Can't wait until he can go out again! He wanted to sneak out with us -- a good sign.  

Relaxing in his "kingdom." 

Settling in

Thanks so much to all of you for the outpouring of love and support. I feel those warm arms wrapped around us. 

Steve is now sequestered now in Tower 7B-39 for the next four weeks. He is feeling poorly and really can't focus on much more than his headache, his stomachache, and his fever.  (Although he was ranting about FOX news yesterday.) 

They are treating him with antibiotics for his fevers and lots of anti-nausea medication. He is on a 7-day continuous IV infusion of one type of chemo, and a daily dose of an IV push of another chemo for three days. He is on day 2 of this -- but who's counting! He also is part of a clinical trial in which he'll receive another chemo drug which has been in use for awhile treating other cancers. 

The doctors say everything he is experiencing is par for the course of leukemia. They think after a few days of chemo he’ll be feeling better. 

He has been diagnosed with a type of Acute Myeloid Leukemia (AML) that has a good prognosis. The type is T(8,21), a chromosomal abnormality type of AML where the 8^th chromosome has screwed up.

 I can't bear to read about AML right now, but emails I have received from those who have read about it say :

"From the little bit of research I did it does seem that t8,21 has among the best prognosis and more so for people who are in good shape - good thing you've been doing all that biking. "

"I did my research.
I'm gonna sleep better tonight.  Clearly, it would be better to be deciding to extend the vacation and go for Barcelona, but this is the best news I've heard in 5 days.
I will not try to minimize the rollercoaster ride ahead, but the view from here is great."

As for the Coppens-Buchsbaum support team, there is always someone from our family and friends who live locally visiting each day. While some days Steve has been up for visitors, sometimes he isn’t up to seeing anyone. We have to take it day by day in terms of visiting.

 But for the girls and me, it's great to have others to share a meal with and some good laughs outside the hospital. These visits keep our minds from wandering and help us stay positive. My heart is full of love and gratitude for these visits, (not to mention the efficient laundry service!)

It's nice that Mia is a few trolley stops away, and Emily will come this weekend.  

I had thought I could respond to emails daily, but I have been unable to keep up, as many of you know. So the next best thing is a blog, in which I will write regular posts. 

I will still try to respond to your emails, as I don't want you to be discouraged from writing to us. Reading your emails to Steve has become a daily ritual and an important way to keep connected with our friends and our lives.

I will also include Mia and Emily's email in case you want to email them directly:

 Mia:    mia.buchsbaum62@gmail.com

 Emily:     buchsbaume@gmail.com

Please stay positive and continue to send your warm, healing energy. Give blood if you can; Steve surely will be making a dent in the blood bank.

Here are a few photos:

One is Steve eating grapes from a vineyard while on our bike trip – taken only two weeks ago.

Here is Mia cutting off the lovely locks last Sunday.

Steve awaiting a blood transfusion for anemia today.

The Chemo count down -- day two of seven

This is a quick slap dash post before I go to the hospital with Mia to see Steve. 

Last night Steve was feeling poorly with fever, fatigue and headaches. The doctors feel these symptoms are from the Leukemia rather than from the chemo. They think that after a few days of chemo the headache will diminish.

He has some nausea but they are treating that quite aggressively with medication. 

More to come! 

His address is:

Steve Buchsbaum

Tower 7B-39

Brigham and Women's Hospital

75 Francis St.

Boston, MA 02115

I am staying at the Inn at Longwood, 

It's a Best Western Hotel on Longwood Ave.

My cell is 207-877-4282

The Events Leading Up to the Diagnosis

 After our two-week bike trip, which was wonderful, we returned to El Puerto. Steve had a headache much of the time on the bike trip, but took Ibuprofen for it. But once back in El Puerto he stopped the Ibuprofen and had constant headaches and fatigue. We decided we had better return to Maine and see his doctor. Last Monday we returned to Maine and he saw his doctor on Tuesday. 

They took blood samples and called us in the afternoon. They were alarmed by his lab values: low platelets, immature white and red blood cells. 

We saw a hematologist Wednesday and he had a bone marrow biopsy. Friday they confirmed what we already suspected, that he has Acute Myeloid Leukemia (AML). 

We are in this harrowing odyssey of dealing with a serious illness. 

Steve has been really feeling awful, very fatigued, constant headache, chills and aches, and fever.

We are now in Boston at the Brigham and Women's Hospital, which is the inpatient arm of the Dana Farber Cancer Institute, an excellent, internationally known center for cancer treatment. His doctor, Dr. Richard Stone, is an expert in the field of leukemia. We feel that he couldn't be in better hands. Tomorrow Steve starts a 4-6 week, very aggressive chemotherapy regime to put him into remission. 

I am staying in a hotel just minutes away from the hospital. My family lives near Boston as well as some very good friends. Emily was here for the weekend, and will be back again Saturday and Mia returned to Boston Sunday after being away for a few days. She spent the night with me here in the hotel. We feel loved and supported, and well-fed as everyone has been taking us out for meals and entertaining me. Mia took the electric clippers today and sheared off Steve's locks, as his hair will start to fall out in two weeks. 

This is insane, and as I sit in my hotel room writing this email, I still have to ask myself if this is all true. But unfortunately it is and he could be in for a rough ride until he is in remission. Let's hope he tolerates the chemo well. The fact that he very healthy and as one doctor said, "you are in remarkably good shape considering what's going on." This is important since people like him have a better chance of getting through the chemo without serious side effects. 

While not all the testing is complete on the biopsy, the doctor told Steve that he has a type of AML that has a good prognosis,. It's called T(8,21).

The trip home from Spain was very difficult for him, sleeping most of the time, wherever he could. We are so relieved that we left when we did. 

I will keep you posted as the days and weeks wear on. It has been very hectic getting to this point.