Day -5; Last Day of Busulfan, First Night in the Hospital, by Vic

Dad and his nurse, Roberta

Me and Dad in his room in the BMT Unit

This morning Dad received his last dose of Busulfan (his first chemotherapy drug). So far Dad is having minimal side effects and is feeling pretty good, other than some anxiety. This afternoon Dad was admitted to the UAB hospital Bone Marrow Transplant Unit. When I arrived at the hospital around 2:30 this afternoon Mom was here as she spent the night in Birmingham with Dad last night and brought him to the hospital this morning for his last dose of Busulfan. Mom left shortly to return to Huntsville and Alex and Amanda soon arrived to visit Dad for a while.

Dad's nurse today was Mervin, who took care of Dad last time he was here. He is a good nurse and he was wearing awesome koala scrubs today. He informed Dad that he will have to gargle some yucky tasting liquid in order to prevent infection in his mouth.

Dad's night nurse is Roberta (see above), who is very nice and submitted to taking a photo of Dad and I, and letting me take a picture of her with Dad.

Dad and I have been pretty busy tonight. We watched Beauty and the Beast and talked to Eva and Joan on the phone. Dad is watching Fox News and falling asleep as I type this. I am staying with him tonight, and tomorrow Eva will return around lunch time. That's all for now!

P.S. Dad's room number is P364 if you would like to send a card or stop by to visit. Dad cannot receive flowers or fresh fruits.

Day -6: Last Day as an Outpatient!

Today was Dad's fourth day of Busulfan treatment. Only one more day of Busulfan to go! Unfortunately today was Dad's last day as an outpatient as well. Tomorrow he will be admitted to the BMTU at 3pm.

The Busulfan treatment went pretty much the same as it has for the past two days--Zofran, then IV fluids and Busulfan for several hours. We were out by 1pm.

Dad and I posing outside of Hope Lodge

We ate lunch and then headed back to the Hope Lodge to pack up all of our stuff and to clean our room. Leaving the Hope Lodge was a bittersweet experience! Although Dad would certainly rather be at home in Huntsville, the staff and other residents here have made us feel extremely welcome and comfortable. We will look forward to coming back after Dad's hospitalization is over.

Mom came down from Huntsville this afternoon, and we switched places, as she wanted to be present for Dad's hospital admission. She reports that the basement of their house has been completely sealed, and that the work cleaning the air conditioning is almost done. Their house should be all ready for Dad to move into once he is well!

As far as how Dad is feeling today, he is still hanging in there like a champ! He continues to eat well, and has not yet experienced the nausea expected from the Busulfan. The only side effects so far are the ones that we mentioned yesterday, some change in taste and a little bit of disorientation. Also, Dad's left arm (the one damaged by the recurrent lymphoma in February) is getting a little bit stronger and less numb each day. He has been very strict about doing the exercises the physical therapist taught him every day. Such a good patient!

Day -7: Cowboys and Aliens

Dad at Vulcan Park

Today Dad underwent his third Busulfan treatment. The first half of the day pretty much went the same as yesterday; he was pre-medicated with Zofran, then received IV fluids and Busulfan for three hours. Today, however, they did not need to check drug levels, so we were released at noon. Boy were we excited to get out so early!

Remnants of Dad's humongous
baked potato

We made the most of our extra half day. First we went to lunch at Panera Bread, and then we went to see Cowboys and Aliens at a nearby theater. We were unsure what to make of the movie...you'll have to see it for yourselves. When I asked Dad to describe it in one word, he said "ridiculous." It was definitely entertaining though, I'll give it that.

Dad and I enjoying the sunset
at Vulcan

We came back to the Hope Lodge to wash clothes and rest for a little while. Then we went to Al's where we devoured some gigantic baked potatoes. We finished-up our Birmingham extravaganza by walking around Vulcan Park at sunset. That's the best time of day to go!

Obviously Dad is still feeling pretty good. He had more energy than me today! He says that food is starting to taste a little strange, but it's not too bad yet. Also, he said that he was feeling a little disoriented during the afternoon. Our goal is to continue enjoying our free time as much as possible until Dad is hospitalized on Sunday!

Day -8: Back in Birmingham

Dad and I woke up to a rainy, cloudy morning. Somewhat fitting for the beginning of our long stint in Birmingham, but we are trying to keep smiles on our lips.

Dad and I at Rail Road Park

After gobbling down some delicious egg and cheese biscuits at the hospital cafeteria, we arrived at the BMTU punctually at 8am for Dad's second treatment with Busulfan. Things happened fast today! Dad's nurse (Kathy) quickly recorded his weight (147 lbs...still chubby!) and vital signs, and then started the "pre"-chemotherapy treatment, which included Zofran (to prevent nausea) and IV fluids (to keep Dad and his kidneys well-hydrated). About half an hour later they started the Busulfan, which ran over three hours. Today Dad got about three times the dose that he got last Monday. That means that he may experience about three times the intensity of symptoms that he felt on Monday. 

Although the Busulfan had been completely given by noon, for the rest of the day Kathy periodically measured blood levels. Dad's medical team will use today's levels to make sure that he is receiving the correct dose of the drug. Recall that part of the study that Dad is enrolled in involves measuring the rate that Dad metabolizes Busulfan. Dad's last level was taken at 5pm, and then we were free to go for the day!

We made a beeline for a Chinese restaurant near the hospital, where Dad quite outdid himself. His appetite is still doing well as of this post! Then we went and walked around in the nearby Rail Road Park for a little while before retiring to the Hope Lodge. Dad and I closed out the day by watching a movie about Lewis and Clark, after Dad fixed the DVD/VCR player! That's why it's good to have an engineer around I suppose.

Day -9; Yesterday and Today, by Vic

Hi, everyone! Dad was happy to be able to come home on Monday night and spend a couple of days here in Huntsville before returning to Birmingham for a very long time. Yesterday (Tuesday) morning Dad came over to our house to witness a huge dead pine tree be removed from our back yard. Dad has been feeling very tired and generally not good since his first dose of chemo drugs on Monday.

In the afternoon Eva and I went over to Al and Amanda's to hang out with Dad for a while. When we arrived Dad was taking a nap in his room, so Eva and I decided we would take naps too. Dad awoke from his nap to find us both fast asleep on the couches. We eventually woke up and Al and Amanda came home from work. We ordered pizza for dinner and enjoyed delicious chocolate oatmeal cookies, courtesy of Amanda. We wrapped up the night by watching a few episodes of an interesting, but gruesome, documentary on America.

This afternoon Dad had a physical therapy appointment for his left arm, which has experienced some nerve damage from the cancer. He had a different therapist than his usual one, who he really likes, but he said this one was okay too. After his appointment Mom dropped Dad off at our house. When I got home from work around 2:30 Mom, Dad and Eva were here. Mom left and Eva, Dad and I ate popcorn and watched a few episodes of the Simpsons until it was time for Eva and Dad to leave for Birmingham. They have since informed me that they arrived safely at the Hope Lodge in Birmingham. For those who aren't familiar with it, the Hope Lodge is free lodging near UAB hospital for cancer patients and their families. When they arrived, the Hope Lodge was hosting a hotdog/hamburger dinner, which was sponsored by a local urologist's office. At the dinner Eva and Dad met a couple from Decatur, Alabama, Carol and Lloyd, who were also staying at the Hope Lodge. Lloyd is getting ready to begin radiation treatments. After dinner Eva and Dad went for an evening stroll and were caught in some rain. Tomorrow Dad will be going to the hospital to continue his chemotherapy treatments. Dad will be an outpatient for the next few days.

Day -11: First Day of Actual Chemotherapy Drugs

Today was Dad's first day of Busulfan, the first of the three chemo "big guns"! To ensure that the schedule would go smoothly, Mom and Dad drove down to UAB from Huntsville on Sunday afternoon for the first dose today (Monday). Dad had to start taking a medication called Ativan on Sunday, as it helps to prevent siezures, which is one of the worst side effects of Busulfan. They were careful to start that on time.

They arrived at the BMTU bright and early Monday morning. Dad was first given a lot of IV fluids as well as Zofran, to prevent nausea, another common Busulfan side effect. The Busulfan was started around 11am and it took about three hours to give. Part of the study that Dad is in involves optimizing the level of the drug in his body, and so blood samples were taken several times throughout the day. During the next two days while Dad is "off" the doctors will use that data to evaluate how quickly Dad is metabolizing Busulfan, and then determine the best dose for him.

Dad tolerated the Busulfan very well and thankfully felt well enough to go back to Huntsville around 5pm, after the last blood level was checked. We were all relieved when Mom and Dad called us to say that they were on their way back! Now Dad will have two days of freedom at home before he has to go back for his second Busulfan dose on Thursday.

Day -12: A Relaxing Day With Dad, by Vic

Eva, Dad, and I at the Waffle House (our waitress was not a very good photographer)

Hi there! This is Victoria aka Vic. For those of you who don't know me, I'm Dad/Rod's youngest (and favorite) daughter ;]. Eva asked me to update the blog today for the purpose of including the perspectives of other people who are close to Dad and will be with him through this journey.

We enjoyed a nice, relaxing day with Dad today. Eva and I took him out for breakfast this morning at the Waffle House. Dad seemed to be doing well today, other than being a bit itchy (itchiness is a side effect of one of his medications). After a hearty breakfast we took Dad back to Al and Amanda's where we just hung out for a while until Mom showed up to whisk Dad away to Birmingham for his first dose of chemotherapy. Mom and Dad are staying at a hotel in Birmingham tonight. I will leave it to Eva to explain all the complicated medical procedures and drugs Dad will be receiving while in Birmingham!

Day -13: A Short Day!

Dad and I started today with a plan: We were scheduled to arrive at the BMTU at 10am, but we instead showed up at 8am, hoping that the earlier we started the earlier we would be able to leave. It worked! Dad got his third (and last) dose of Palifermen and they set us free.

Dad escaping from UAB

We immediately headed back up to Huntsville. We stopped at Vic's garage sale on the way back, ate some lunch, and then arrived at Al and Amanda's without mishap. Dad is super-excited about getting to spend almost the whole weekend at home! He does not have to be back in Birmingham until Monday morning, for his first dose of Busulfan.

Dad is feeling pretty good right now. His neck is still a little sore from getting the two central lines, especially on the left side. The only side effect he's felt from the Palifermen so far is an increased feeling of "sliminess" in his mouth and a slight change in taste. We're going to battle that by taking him out for Mexican tonight!

That's all for now, until Monday!

Day -14: A Day with Interventional Radiology

Today was another long day playing the waiting game.

Dad and study nurse Lisa Williams

After an uneventful night, we arrived at the BMTU punctually at 9am. Dad's study nurse, Lisa Williams (see photo) came by to chat with us for a little while. She will be monitoring Dad through the entire chemo-transplant process.

Diagram of a Hickman central line-I didn't think
you guys would want pictures of  Dad's actual lines...

The next scheduled event was for Dad to get two central lines placed, one on each side of his chest. At UAB this is done by the Interventional Radiology (IR) department, under fluoroscopy to avoid complications.

So the wait began. First we watched old black and white sitcoms in the outpatient clinic room, then Dad began reading his Kindle (thank God for the Kindle!) and I began computing. After about 3 hours we both got sick of what we were doing and began to bug the nurses to call IR and see what the hold up was. Apparently several emergent cases had been squeezed in in front of Dad's slot. Finally, at 1pm, he was taken down for the line placements.

At 5:30pm Dad came up, complete with "some new ornaments" as he likes to call them. The procedure went well, and a chest x-ray confirmed that the lines are both in the correct position. Dad is just really stiff around his neck on both sides. His first order of business upon returning to the BMTU was to scarf down a hamburger and some fries!

Dad then got his second Palifermen dose, and we were able to go home around 7pm. What a day!

Day -15: First Day of the Last Treatment!

Welcome to a blog about Dad's high-dose chemotherapy experience! Dad (better known to many of you as "Rod") and I (Eva!) decided to start this blog so that everyone can easily keep up with him over the next several weeks. Of course we still welcome your calls, emails, and other forms of communication!

Melissa, Dad, and I in the BMTU

To briefly catch everyone up, Dad was diagnosed with non-Hodgkin's lymphoma back in February 2010. He underwent R-CHOP treatment and head/neck radiation. His lymphoma went into remission for a short time, but unfortunately it recurred in February 2011.

Dad then was given R-ICE treatment in Huntsville with Dr. Gualtieri, in preparation for bone marrow transplant and high dose chemotherapy. We decided to go to UAB for the transplant and high dose therapy, as they have been doing it for a long time. Also, our UAB oncologist, Dr. Vaughan, was one of the original developers of the current high-dose treatment regimen! Every time we see him he tries to convince me to go into oncology...

Dad underwent "mobilization" chemo and stem cell collection in June 2011. Then he was able to rest and grow strong again for a month at Amanda and Alex's house. Today we're back for the hardest part!

We arrived at the Bone Marrow Transplant Unit (BMTU) on the 3rd floor of UAB Hospital around 11am. Dad's vital signs were taken and he was weighed--we're happy to report that Dad weighed-in at a healthy 147.8lbs (67.2kgs) (up from his last hospital weight of 132lbs)! Thanks for all the good cooking Amanda!

Then Dad's nurse practitioner, Melissa (see photo) reviewed all of his test results with us. Everything looked great! There was still some uptake in his left deltoid (shoulder) on the MRI, but his PET scan was clean. Next we signed consent forms for the treatment. Dad will be participating in a study, but no worries, it is not a scary-orphan-drug type of study. The purpose of the study is just to get FDA approval for the treatment regimen that is already the standard of care for recurrent non-Hodgkin's lymphoma. They have been using this regimen for more than 15 years, and it has a great track record. The drugs Dad will be getting include Busulfan, Etoposide, and Cytoxan.

Dad chowing down on some BBQ

At this point, Dr. Vaughan and Melissa had to go over the possible side effects of the drugs that Dad will be getting. I have to admit, it was a gloomy discussion. Briefly, Busulfan can cause seizures (so Dad will be on Ativan for seizure prevention); Etoposide can cause sudden drops in blood pressure, fever, and malaise; Cytoxan can cause hemorrhagic cystitis (Dad will be given a lot of fluids as well as Mesna to prevent this) and SIADH. And of course it is very common to have nausea and diarrhea during the treatment. Eventually Dad will lose much of his mucosa, and so he will be pre-medicated with a drug called Palifermen to help salvage some of it.

Dad handled hearing the description of all the side effects stoically. Then we were sent down to Hospital Dentistry to get the tooth ache he's been having checked out. They attributed the ache to Dad grinding his teeth (no infection, whew), and took measurements to make a mouth guard for him. It's amazing how quickly one can get stuff like that done in the hospital! Finally, we came back upstairs to the BMTU for Dad's first Palifermen treatment, which he got around 7pm. Needless to say, it was a long first day!

After leaving the BMTU, we went to Jim and Nick's BBQ and had a large hearty meal before retiring to Hope Lodge (patient housing) for the night. Dad isn't allowed to eat anything after midnight because he will be getting two central lines placed tomorrow.

That's all for now. We will try to post updates to this blog everyday! Good night!