Tuesday evening.
This morning felt a little rough. I am back home, so I am not on the steroids that they were giving me at the hospital to help with the fatigue. I mostly slept through the morning, which is likely to be typical. Becky made me blueberry pancakes with maple syrup. It is so nice to be home with good food. It does take me forever to eat - I sort of peck away at it, because my appetite is pretty low, but Becky is such a good cook, each bite is delicious. I also had some of Erica's flan today, and I sing praises for it. :)

I went out for a little walk this evening with Becky and the dog. It is important for me to be moving around. The fresh air and the evening were good for me, and I have rallied a little. I am feeling about as well as can be expected at this point. After the pace of the hospital, it has been nice to have a rainy day to rest.

Tomorrow I have an appointment at the Waldo County Hospital. I think that it is for a general check-up and to see if they need to schedule a transfusion. I will let everyone know how it goes.

Leif

We arrived home about 7pm last night, and it's good to be here. Many thanks to Erica, Scott, Robin, and Jeremy for the delicious meal that awaited us - Leif ate tons, pronounced it delicious and exactly what he wanted, and he could definitely taste the love. He's very grateful to get some real food. The hospital meals were good "diner" food, but he is glad to get back to his usual diet. He got a good night's sleep last night; we are getting a rainstorm here and the distant thunder and pattering raindrops are peaceful and relaxing.

Yesterday's doctor visit went well. Although his red blood cell count is low and he will be dragging, he's young and healthy enough that the doctor does not think he needs a transfusion yet. Also they discontinued the steriod he was taking (dexamethasone), and that is expected to lead to additional fatigue. His white blood cell count is now down to 46, which is lower than it was on his first test last Friday.

His uric acid levels are nice and stable, which indicates that his kidney function remains good. His job now is to drink plenty of fluids and keep moving around as much as he can.

Many of you know that Leif's parents live only 20 minutes from the Midcoast Hospital. It was wonderful to be able to see his mom frequently (his dad is traveling on business) and she has generously been dog-sitting and, um, Becky-sitting. Leif got numerous visits from family and friends while in Brunswick, which he enjoyed very much.

Posted by Becky

Looks like I will be out of here today. The chemo is going well. While I believe strongly in eating healthy, exercise, and meditation, modern medicine still has a definite place. The doctors have been pleased with how I have done on this first step of treatment and the prognosis is as good as one can have. I am not reacting badly to any of my chemo drugs, and the protective drugs all seem to be doing what they are supposed to. 

I have been doing much less reading than I would have thought. Most of my energy is going into sleeping, getting poked by the nurses (who have been SUPER-sweet), and keeping up with my friends - just letting people know what is going on. My understanding is that for the next week my energy will continue to decline and that I will mostly resting and some reading, and then I will get some improvement after that.

We are not sure what we need right now. For me, it is mostly time to process this all and to rest. Becky needs as much support as I do, since she is taking care of so many little details for us. As we go forward and figure out what would be helpful, we will be letting you all know. The outpouring has really been more than I could have imagined. I have such wonderful friends.

Leif

Leif had another good night of sleep last night. The kitchen sent up a nice big fruit plate with his lunch that he has been appreciating. His white blood cell count today is down to 79. The doctor estimates his spleen is down to about 14 cm from about 18 cm; which is still huge, but going in the right direction. Leif's new dinosaur name is SplenomegaLeifasaurus! We are still on track for him to leave the hospital on Monday afternoon, with an outpatient visit in Belfast on Wednesday morning.

I have met with someone from the hospital who says that they've been in contact with our insurance company. I haven't been paying much attention to the financial side of things as yet, but we are fortunate that Leif does have health coverage. I have been told that because he is getting a standard therapy for a clear diagnosis, the insurance ought to be more on the straightforward side.

Posted by Becky

Quick note from me. They have me on some drug which means that I need to pee every hour, so it has been keeping me busy. 

I have good confidence in my doctor - Dr. Connelly, in large part because she was very quick to talk to her colleagues around the country and come up with a plan. They have me on a treatment called R-hyper-CVAD, which lends itself well to the next stage - the stem cell/ bone marrow transplant. It is amazing to me that just 10 years ago, this was incurable, and now has a cure rate of better than 70%.  I think that being young, in good humor, and otherwise fit will give me about as good odds as I can get. For now I am not thinking about the long term very much. I am just taking one day at a time. There is a lot to take in and process. I have decided to just treat this not as an imposition, but just part of life. There are new things that I am doing every day, and little pleasures to enjoy. The nurses are very nice, I take a little walk every day, and I have some amazing friends.

Thank you all for you support and love.

Leif had a good night's sleep last night, got up and took his laps around the ward, ate a breakfast sandwich and half a bagel; asked us to hold his blueberry smoothie, raisin bran, and other half-bagel for later this morning, and is now taking a good nap.

The weekend doctor, Dr. Keating, came by this morning. They are discontinuting the Cytoxin (cyclophosphamide) today and starting him up on doxorubicin and vincristine, the second part of this cycle's chemotherapy regimen. The doxorubicin is a 48-hour infusion, and once that's complete, we'll be able to leave the hospital, so we should be going home on Monday.

His heart test results look really good - thank you Ultimate Frisbee - and his blood test results are looking a little bit better every day. One concerin is that if his uric acid levels rise too high he can get kidney damage; so they are giving him allopurinol for that. So far his uric acid levels are not rising. His white blood cell count was 130 when he came in, and now is down to 106, so that is going in the right direction. His platelets are a bit down and he's a bit anemic, both of which are expected, and not too bad. A transfusion is likely at some point in the future to deal with that. His fluid levels are stable; he's peeing out slightly more than he's drinking, which is a good thing. His legs are somewhat swollen because they give him tons of fluids to flush the chemotherapy out. He is not experiencing any pain, just fatigue and loss of appetite. He's powering through his meals manfully whether they appeal to him or not, and the hospital has been great about sending up any foods that he thinks he would like.

Thanks so much to all our friends and family for the outpouring of support. It means the world to Leif and he feels so grateful for all your help, kind words, hugs real and vitual, calls, emails, and good energy. 

Posted by Becky

Friday - no excitement today; Leif is eating well and while he's been getting tired more easily, he still feels all right. 

Posted by Becky

On Wednesday, Leif was transferred to Midcoast Hospital in Brunswick and began chemotherapy treatment. He is getting a Hyper CVAD-R protocol, which involves quite a bit of inpatient chemotherapy. Future inpatient chemo will also take place in Brunswick. We like this hospital; it's a brand-new facility with nice, big, comfortable rooms, plenty of staff, etc. It has the added advantage of being only 20 minutes from Lloyd and Rhonda's house. Outpatient chemotherapy will be at Waldo General Hospital in Belfast.

Yesterday Leif had a port installed just below his clavicle, through which they can do chemo and blood draws without putting so many holes in his arm.

He also got a MUGA scan, and the technician let us see the photos of his heart, which the computer processed into 3-D videos of his heart function. That was very cool. His heart function looks good, although his heartbeat is not very regular. Anybody who has ever seen Leif dance already knows that he has his own, unique drummer.

 Posted by Becky

Basic information about Leif's condition

Leif was diagnosed with Mantle Cell Lymphoma on Wednesday, May 23, after going to the emergency room Monday, May 21 with suspected leukemia.

His primary oncologist is Betsy Connelly, who works in Belfast, ME part of the week and Brunswick, ME the rest of the week. She is consulting with the transplant specialist Kenneth Meehan at Dartmouth.

Posted by Becky