Sunday, August 31, 2008

Ipi at an end

Hi! Last Friday, Kelly and I drove down to Chicago to review my latest chest, abdomonen, and pelvis CT scans with Dr. Richards. The results were clear: after giving it several chances to succeed, the ipilimumab (aka antiCTLA-4) is a confirmed failure. The cancer continues to progress, so we will have to choose a new plan of attack. Dr. Richard's recommendation on Friday was an infusion of carmustine, a particular chemo drug I have not received so far. He said carmustine (aka BCNU) has few side effects and, because it is unfamiliar to my body, the melanoma cells may respond to the drug. We may start the carmustine as early as Tuesday.

After our visit with Dr. Richards, Kelly and I took a brief weekend getaway to Wisconsin Dells (my folks came to town and watched the kids). It is always so nice to get time alone with Kelly. Unfortunately, I have experienced a significant decrease in overall strength, so I spent most of my time laying in bed. Meanwhile Kelly spent most of her time helping me move anywhere I needed to go other than bed (e.g. the bathroom, the car, a restaurant table). Once again, I have to extol the virtues of her patience and loving care for me at this time. And once again, I have to ask you all to pray for us.

Wednesday, August 27, 2008

Happy Birthday, Regan!



Hi! Today is a very special day for our family. This is the day, in 1999, when Regan was born! We thought we were getting by easy with this pregnancy. Her ultrasounds looked normal, her heartbeat was stable, everything was going fine. Our only concern was the fact that Kelly thought Regan seemed like a big baby and Kelly really wanted to avoid a C-section. So, with the doctor's permission, we induced Regan to be born on the morning of August 27. We checked in early at the hospital and I finished the final chapters of "Les Miserables" by Victor Hugo"--which, incidentally, is one of the five greatest books of all time in my opinion -- while Kelly was hooked up for an epidural.

Not much happened for several hours if I recall correctly, but that's the way things are supposed to go when your doctor is affiliated with the best baby hospital in the state of Wisconsin. St. Joseph's Hospital, where Regan, Jack, and Finn were born, delivers 4,200 babies per year and nearly 300,000 total since three Fransiscan missionary nuns opened a house in 1879 to take care of the sick in Milwaukee.

It was getting close to noon by this point, and I thought I might go grab a BigMac or something. I mentioned this to Kelly, and she gave me the okay, which was very kind considering she herself could not eat anything until Regan was born (but that's just the type of selfless person Kelly is). I also asked permission from the attending nurse, and she approved my errand after a quick check of the monitoring equipment. So I kissed Kelly, walked to the door, waved goodbye, stepped into the hallway, and took several steps toward the elevators when I heard this very loud and frantic "WAIT!" As I turned around, a nurse rushed into the hall and stopped me. "Mr Dodd," she said. "Your wife thinks it's time to push!"

No decent man should ever stop to argue, ask questions, or consider other options when he hears that phrase. Even I knew that. So I just followed the nurse, who now was ushering me back to my seat by Kelly's bed. Good thing they did, too. Our one-and-only Regan Margaret Dodd was born in a matter of minutes. Her vital statistics were 7 lb 13 oz and 21 3/4-inches-long. Kelly remembers all that. I don't. I remember a few events, like the doctor dressing down an overzealot medical student who was going to clip the umbilical cord without asking me first. And I remember crossing the room so that I could kiss Kelly and tell her how gorgeous she was that day (incontrovertible fact #1, if your wife ever gives birth to new life: she is gorgeous that day). I remember most of all, however, the nurse bundling up this big-eyed baby girl and after a little bumbling around--of course, the nurses never think us Dads can hold a baby--Regan was there in my arms. I gave her lots of snuggly kisses, just letting my lips rest on those sweet baby cheeks that smell so good and feel so soft and remind us why life is so wonderful.

And then I tried to get those bright baby eyes to look at mine, but they wouldn't turn my direction. Oh well, I figured, I was patient. Kelly was still getting cleaned up, so I took Regan to the window. I showed her the whizzing cars, the fluffy clouds, the green leaves, waving left and right. And then I held her out from me and tried to persuade her to look at me. If she were looking right, I would move my own face that direction, saying her name and singing. She simply looked further to the right. So I sat in a rocking chair next to Kelly's bed, held Regan very close to me, and softly sang to her. And she examined every object in that room except me. And then a question came into my mind: does Regan have a diaper on? I didn't remember the doctor putting a diaper on her. I couldn't recall a nurse putting a diaper on her. I felt reasonably confident that I hadn't done it, nor had Kelly. I thought back to Aubrey's birth: what did they do then? They put a diaper on Aubrey when she was born, didn't they?

Just as I began to convince myself that maybe a diaperless baby was the new way of dealing wih potty-training, I felt a warm sensation spread across my lap from one end to the other. I looked down, a bit surprised, and saw the culprit: a beautiful, towel-wrapped baby, making sweet little noises, and looking off into the distant. I lifted the wet bundle with my arms, held her out so she could see me, and jokingly asked, "so that's what you think of your old man?" She simply turned her head to the side, as if to reply, "yeah, what of it?"

I know enough about child rearing to know that newborn infants cannot reason, cannot play games, cannot express emotions (unless you count pain or hunger or sleepiness and those kind of basic instincts, as emotions). Regan, I reason with myself, could not have meant for any of those things to have happened that day. What is more likely is that she was expressing her queenly--and instinctual--personality on that day, making it as clear as she could, that she was destined for greatness.

Regardless of its meaning, the story of Regan peeing on her father has become a bit of a family legend in the Dodd Squad annals. And I'd gladly have her pee on me ten times more--only as an infant, of course--if if that's the price we had to pay for getting our Regan in our family! She's a wonderful daughter, a beautiful girl, and one of the reasons I think life is worth living!

As for me, the pain medication has worked, I'm eating more, and the nausea has subsided. I think I have more emotional energy, if not physical energy. Indeed, I am having trouble walking from one room to another these days.

My folks come to town tomorrow, then Kelly and I go to Chicago for a Friday followup appointment with Dr. Richards. If all goes well, or as well as can be expected, then the goal is for Kelly and I to take a couple-days for a romantic getaway at a B&B in western Wisconsin. Mom and Dad agreed to watch the kids here at our house as they burn off energy in those last few days before school starts on Sept. 2.
Till next time, happy birthday Regan!

Tuesday, August 19, 2008

A sigh of relief

Hi! It seems the palliative care team has identified a pain regimen that works. I now take 40 mg of OxyContin (aka oxycodone) each morning and each evening to lay down a baseline of around-the-clock pain relief. If I feel like I need immediate relief of aches and pains that somehow break through the baseline dosages, I can take 2 - 8 mg of dilaudid (aka hydromorphone) as needed. I have followed this plan for pain management since last Thursday, and I'm glad to report that things are better indeed. I had several visitors in the house this past weekend and, thanks to the medication, was able to visit with all them.


Not much to report otherwise. I hope you're enjoying the waning days of summer. Autumn will be here before we know it.

Wednesday, August 13, 2008

Me again.

Hi. I spent most of last evening at the emergency room. The abdominal pain had become quite severe and, after two or three hours of trying to tough it out, I called both Dr. Richards and the Froedtert palliative care clinic on-call nurse for advice about how I could get to feeling better.

Dr. Richards listened to me describe my symptoms and suggested that the pain was probably caused by more hemorrhaging in the liver. He said it would probably persist for two days and recommended a visit to the ER. He said the ER could provide me with more potent pain relief medications than I currently had at my disposal. The palliative care on-call nurse recommended the same thing. I was willing to do just about anything for immediate pain relief so I happily agreed to do what they said.

Kelly took me to the Froedtert ER. Not only is it widely considered to be the best ER in southeastern Wisconsin, it's also a three-minute drive from my house. We were immediately taken to a room (it's amazing what kind of service you get when you tell the ER receptionist that you have metastatic cancer!) and, after a brief chat with the nurse and on-call physician, I was hooked up to an IV of dilaudid. I had received a dose of dilaudid when I visited the ER earlier in July so I knew that it would work. By the time we left a couple hours later, I felt better than I had felt in a long time.

I returned to the palliative care clinic today for a follow-up. The care team (as they're called) took me off the hydrocodone (aka Vicodin), upped my oxycodone prescription even more, and gave me a new prescription for a pill-form of dilaudid. I'm hopeful that it will help me manage the pain, which in turn will help me manage the fatigue. If it doesn't, the care team said I should plan on spending a few days at the hospital so that they could monitor me more closely and devise a pain plan that works.

So that's the plan for getting my pain and fatigue under control. Now we need to figure out something for Kelly! In the past seven days, she has probably averaged three or four hours of sleep per night. All of my nocturnal tossing and turning, along with her late-night band performances and general anxiety about my situation, have made it very difficult for her to get the sleep she needs. The kids are great help and we've hired some people to handle many of the household tasks that would otherwise fall on her shoulders. Even so, she's carrying a very heavy load these days. If you're in the mood to pray, say a quick one asking God to give her the rest she so desperately needs and deserves.

Monday, August 11, 2008

From where, o where, has my anemia come?

I just reread this post and realize how unintelligible it was. This is a modified and more literate version . . .

Hi. I had a visit with Dr. Richards in Chicago today. I had hoped he would be able to provide some answers about why I had anemia, whether it was a good sign or a bad sign, and how I could alleviate the pain and fatigue as quickly as possible. Unfortunately, he could not. The doctor said anemia is not typically associated with ipilimumab and so he doubted that the treatment was the source of the trouble. He was concerned about my pain and fatigue, though, so he moved up my schedule for CTs from end of September to end of August. And he told me to schedule a follow up with the palliative care team to determine if I need another blood transfusion. He also doubled my dosage for oxycodone, which should help me stay ahead of the pain.

So why am I feeling so crummy? I really don't know. I'm not passing blood. I'm eating a regular diet and maintaining my weight. I probably won't get any real answers until my CT scans come through in a few weeks. Hopefully the answers will be positive. I am trying my best to focus on the fact that my symptoms could be signs that the treatments are working. Let me tell you, though, it's awfully difficult to stay cheery when you feel like you've been beaten to a pulp and your wife has to feed you because you can barely hold a spoon. And it's difficult to stay cheery when you look at yourself in the mirror and, instead of seeing the trim physique of an active man, you see the edges of bones and atrophied muscle and lumps under the skin that shouldn't be there.

Please pray for me in the coming weeks. I know many of you are, but I could really use an extra dose of strength right about now. Even more importantly, please pray for Kelly and the kids. This cancer cross is as much theirs to bear as it is mine. They are really amazing in their willingness to help me in whatever way possible, but I know it takes a toll on them even if they don't let on that it does.

Jeff

PS. A big thanks to Barb, a wonderful woman and mother of one of Aubrey's best friends, for serving as my chauffeur today. She was very patient with my pain and fatigue, and she provided pleasant conversation even when all I could do in response is nod or mumble. Thank God for good friends.

Saturday, August 9, 2008

my summer!!!!



hey everybody! it's aubrey. first of all, im sorry i went to camp, like, a month ago and i still haven't written a blog (hey-i have a busy life). also, i was inspired to write because of some amazingly cute pictures of (who else...) Finn :)))

so to begin with, camp was really fun! it was 3 days and 2 nights, just like the winter camp i had gone to, and some of my friends were there. we went swimming, fishing, took a ride on a ship that was meant to be like a pirate ship (it was pretty cool), went tubing, had a dance, played sports, did an all camp scavenger hunt, and stayed up super late in our cabins eating marshmellows, chocolate, and vitamin water! the camp is broken up into groups by age and so i was in the 12 & 13 year old group of girls. we stayed in these tree houses that were awesome-they were actually in the trees and each one had a 2 spiral staircases and 4 bedrooms. my best camp friends and i picked one of the top bedrooms and we spent about half of the first day decorating it! we made a "chandelier" out of an umbrella and a bunch of flashlights, made a snack bar, and cleaned everything. then we hung beach towls as curtains, moved our beds around, and set up iPod speakers in the middle of it all. it was easily the coolest cabin ever although there was no actual electricity or air circulation! the only thing wrong with the camp was it's food, but we had plenty of candy, popcorn, and smores back at our camp site, so it didn't really matter.

**above is a picture of my 2 best friends from camp and me on the "pirate ship" from left it's me, katie, and ashley.

anyway, now that i've told you about camp, i would just like to say that Finn is getting more and more adorable everyday. he loves to walk around and play outside. his favorite toys are basketballs and soccer balls but he also likes to play on the swings, go down the slide, and get sprayed by the hose! it's fun to watch him play because he never gets tired!!

**i took the picture of him with the basketball the other day. by the time we got inside the white onesey (sp??) he was wearing wasn't white anymore and he was soaking wet from the hose!!

in addition to playing with Finn outside and going to camp, i've gone to partys, the jonas brothers concert, i've given regan makeovers, redone my room, gone to a very formal brunch with my dad at a french restaurant on the lake, and in 6 days, i'll be off to a lake house with my best friend for a week. i've also been designing dresses and (of course) taking lots of pictures!!

well, i think it's time to wrap up this blog so i'll talk to you later!

love and kisses <3

aubrey kate

Thursday, August 7, 2008

What Did Jeff Do Today?

Hi! It's been a big day for me: I had my first blood transfusion! : ) As I mentioned in my previous email, fatigue has been nagging me since I had my most recent ipilimumab infusion. And the fatigue has increased significantly in the last week. I was so tired last night that I had to prop my arm up on a pillow just to read a book. After two hours of sleep last night--which probably sounds quite indulgent to Kelly, who didn't get any sleep at all because of my tossing and turning all night (sorry honey!)--I felt even weaker this morning.

Fortunately, I had my appointment with the palliative care team this morning. After explaining my medical history to them, they said they thought my problem was anemia. The doctors performed a few old school tests for anemia--pinching my fingernails, taking my blood pressure while sitting and standing and laying down--and then ordered a blood count. A normal, healthy male will have a hemoglobin count between 15 and 18. Mine was 7.5. The solution to this deficiency is a blood transfusion. Thankfully, Froedtert Hospital is equipped to handle such a situation, and I was admitted to the hospital for an in-patient blood transfusion.

I didn't know what to expect from the transfusion. Blood transfusions get a lot of bad press and do carry some risk, but generally speaking my transfusion was more or less just like all of the other infusions I've had. They put me in a chemo suite (a three-sided room that opens to a central nurses station), tapped in an IV, hung the first of two bags of blood I received, and gave me the remote control to the tiny TV hanging in the corner. A nurse checked my blood pressure every 15 minutes or so to make sure I didn't have an allergic reaction. Otherwise, I just sat there in my recliner and rested. After about four hours, the transfusion was complete and I was released to come home.

According to the doctors and nurses, the transfusion should have an immediate effect on my fatigue. I think they were right. I certainly feel better tonight than I did last night or this morning. I will go in for blood tests tomorrow and have my counts checked. A nurse said my hemoglobin count could be as high as 9 by tomorrow, which is still quite low but a marked improvement nevertheless.

The doctors could not say for certain why I have anemia, but the likely culprit is my clinical trial medication: ipilimumab, aka antiCTLA-4. Hopefully the transfusion will alleviate some of the fatigue. Most of the pain I had been feeling lately is gone, and I can sleep on my sides and stomach again. I take that as a good sign. Dr. Richards, who I meet with on Monday in Chicago, will probably be able to provide more information about all of this stuff. The doctors today couldn't offer much help because they are not familiar with my clinical trial and therefore do not know much about how it works. I'll post another blog after meeting with him.

Before I end this blog, though, I need to give a big THANKS to Grace, one of our babysitters, for watching the kids all day on short notice. And to the kids themselves for being so patient and helpful to me during all this. And to Kelly, for everything she has to bear and endure because of my melanoma. I'm continuously amazed by her ability keep our lives as normal as possible in the middle of a cancer war zone. A blood transfusion seems easy in comparison.

Saturday, August 2, 2008

A Long Overdue Update

Hi! First, I'll start with good news: yesterday I met with Dr. Malkin, my neuro-oncologist, to review my latest brain MRI scan. Once again, the scan shows no evidence of active disease in my brain. This is a minor miracle in my estimation. As I near the one-year anniversary of my craniotomy and gamma knife procedure, I feel tremendous gratitude toward all of my neurologists and oncologists for the care they have provided to me during the past 12 months.

Second, I have to apologize for not posting a blog during the past three weeks or so. I've had the best of intentions, but somehow it seems like each day gets away from me and before I know it I'm laying in bed trying to remember what if anything I accomplished that day. The blog is not the only thing that has suffered. I've been lax on my email replies, on letters and cards I need to send, on phone calls I owe to other people. Don't even ask about my to-do list.

What's kept me so busy? Well, my excuses come down to three things: nausea, pain, and fatigue. The nausea has been mild, fortunately, and most of the time I do not feel sick. The trick, I've discovered, is to make sure my stomach is never too empty nor too full. It also helps if I eat slowly. So I might spend 90 minutes eating a bowl of cereal, a couple of hours putting down two pieces of french toast, and a good hour to snack on half an apple and 4 oz. of 7-Up.

The pain, on the other hand, has been quite unpleasant. It strikes in two ways: either as a sharp nerve-related pain, most likely caused by abdominal or liver lesions pressing against the set of nerves that run through the middle of the body; or as a deep ache around the middle of my torso, between the ribs and hips, that leaves me feeling like I've been pummelled by Rocky Balboa. I don't know whether the pain is a good thing--is it caused by the necrosis (death) of cancer cells?--or a bad thing--is it caused by the growth of the cancer? But I do know it has knocked me to the sideline on more than one occasion this past month, and I wish it would go away.

My third excuse, fatigue, is probably caused by my ipilimumab treatment and the preponderance of narcotic pain medications I've been taking. In an effort to alleviate the fatigue and minimize the pain, I will be meeting this coming week with a palliative care consultant. The consultant is associated with Froedtert Hospital's new cancer center (Froedtert, for those who don't remember, is where I had my craniotomy). Palliative care focuses on symptom management. Hopefully, the consultant will be able to look at my symptoms--the nausea, pain, and fatigue--and recommend a more effective way of treating them that won't interfere with my clinical trial.

So that's why I haven't blogged lately. I promise to try to do better.

But enough about me. Let's get down to the good stuff: what's happening with Kelly and the kids! Kelly started her new job July 1. She loves it, and I'm so proud of her for what she's accomplished. She's had to spend a lot of time this past month meeting her new colleagues, settling into a new office, learning new software systems (e.g. for billing and scheduling), figuring out how a Blackberry works, making sure prospective and current clients know her new contact information, and doing all those other tasks that a person must do when starting a new job.

On top of that, Kelly's band has been quite busy this summer, playing everything from private retirement parties and wedding receptions to hometown 4th of July celebrations and even Summerfest (www.summerfest.com). That's good from the band's perspective. Unfortunately, many of these shows take place in small towns throughout Wisconsin and Illinois, requiring Kelly to drive 45 minutes or more to get to the venue and then another 45 minutes or more to get home again. And they're usually night shows that start at 8:30 or 9:00 p.m. and go until 1:30 or 2:00 a.m. Kelly loves the singing and performing, but the only thing she wants to do--and it's what she also needs to do--is sleep, sleep, sleep for the next day or two following a show. Of course, that's never gonna happen. She's always joking with me that her life on the weekends is one of simple choices: should I eat or shower? should I shower or sleep? But no matter how busy she is, somehow she manages to spend quality time with me and the kids every day. I don't know how she does it all, but I think it proves just how amazing she is!

The kids have finished up their organized summer activities (e.g. t-ball, swimming lessons, the city library's summer reading program), so now they have more time to act as my domestic servants. That may sound like a joke, but it's not. Aubrey, Regan, and Jack help me constantly. They gather and sort laundry; water plants indoors and out; wash, dress, change, help feed, and babysit Finn; take out the trash and roll the big cans to the curb for pickup; undertake minor gardening and home maintenance tasks that I can't do; help shop for groceries; and the list goes on. I also try to give them time and opportunities to play with their friends so that they can enjoy their summer vacations a little bit. : ) In my defense, I think they would say they're having a good summer if you were to ask them.

Well, that's all for now. I promise to write more later.