Two years...

It has been two years now since I lost my dad, he passed away December 17th, 2008 from Burkitt's Lymphoma. Not a day goes by where I don't think about him, or miss something about him. It's easier now than it was before, the conditioned behaviors like reaching for the phone to give him a call are becoming less frequent. I miss him the most when I have something fun or important that I want to share, wouldn't it be great if I could show him what I'm doing with the family history project! Or miss him when I go back to Madison and cannot visit him (visiting a grave is just not as warm - and the grave site won't do a crossword puzzle with me!).

My dad had his faults, but he had his great qualities as well - he was caring, smart, and he challenged me. It's strange sometimes to stop and truly realize that he's no longer with us, that he's not just "away" somewhere, or not answering the phone - but that he's really gone for good.

I will always cherish the time that we had with dad, even when his health got bad - as I am sure it makes me a better person. But if I had to share anything with those of you who still have both your parents, it would be this - cherish every moment you have with them, ask them questions - questions about who they are, what they were like when they were younger, what they wanted to be, and what they want to be remembered for. I had dad for 26 years and still wish I knew more about him....

I will miss him always, but will carry him in my heart much longer than always...

Gaily Bedight a Gallant Knight...

Gaily bedight,
A gallant knight,
In sunshine and in shadow,
Had journeyed long,
Singing a song,
In search of Eldorado.

But he grew old,
This knight so bold,
And o'er his heart a shadow,
Fell as he found,
No spot of ground,
That looked like Eldorado.

And, as his strength,
Failed him at length,
He met a pilgrim shadow;
"Shadow," said he,
"Where can it be,
This land of Eldorado?"

"Over the mountains
Of the moon,
Down the Valley of the Shadow,
Ride, boldly ride,"
The shade replied,
"If you seek for Eldorado!"

-Edgar Allen Poe

This poem seemed a fitting tribute to my dad - Poe was a well loved author of his, and he had this poem memorized and would recite it to me whenever I asked. Maybe now dad has found his Eldorado. I'll miss this, and all of the other stories and quirks my dad had. We had the memorial for dad this past Sunday, December 21st, on what was likely the coldest day of the year in Wisconsin. I like to think dad wanted it that way. It was an amazing experience - overwhelming at times, but comforting as well. It meant so much to greet people as they arrived and the support and sympathy was incredibly moving.

We held the ceremony at Grace Church in Madison. This is my dad's church...he was baptized there, served as an acolyte, attended Sunday School there, was married there, and attended the funerals of his family that passed before him there. It was a nice service, although I had trouble holding back the tears at times... It's been difficult getting used to the idea that he is gone, really gone from his living life. Each step seemed like one more finality - reminding me of our loss.

We finished the week by cleaning out the rest of dad's apartment. It was our good fortune that we took care of a large part of this earlier in November. Mariam and Grace and I reminisced about dad, and sorted through old papers, photos and mementos. When I finally left his place for the last time on Tuesday night - it was so difficult. To think that I would never be able to come home to dad again, was so hard...I had to keep reminding myself that I could take him with me, and carry him in my heart every day.

The last two weeks have been a roller coaster, moments of good and moments of bad. It's been amazing to feel the support of family and friends. My mom was an amazing comfort through the whole thing. This support is helpful for those lower moments...where I think about how I just didn't have enough time with him...or how there are so many other conversations I wish I could have had with him. I know this post seems a little disjointed...but I am still working through it all in my mind.

Thank you to everyone for the condolences and the sympathy...it means a lot to me. P.S. - the photo at the top was taken by grace during the last hospital stay...he was so strong, hardly complained and even kept a smile on his face.

A Very Sad Time...

Early this morning my dad passed away. His body couldn't fight the cancer and the other health problems anymore. It was a devastating night. Today we'll make the arrangements for the funeral and the visitation...and then who knows what...

Going back to Madison...

Tonight Felipe and I will fly out to Madison, dad's health troubles seem to be getting worse by the day. Unfortunately in this situation, his health problems are compounding. I received a call from his oncologist this morning, and he suggested that I come sooner, rather than later. It is such a difficult prospect to face - losing someone who has been a part of your daily life since before the day you were even born... I want to keep up hope, that maybe he'll be able to pull through this like he has so many other times before, but each time I think about it...it seems less and less possible.

They've moved dad back to the ICU, they'll try to suction out some of the liquid that is flooding his lungs, and who know what else they can do. Just please keep him and our family in your thoughts and prayers. And please, seriously this holiday season - really appreciate your family and your friends for who and what they are - our relationships with others are special privileges that we hold for only so long.

Dad Update - Back in the MICU

So dad is back to the ICU yesterday, again with troubles breathing. He wanted to leave the hospital so badly too. They're not certain just yet what is causing his problem this time. The doctors have ruled out a pulmonary embolism (blood clot) in his lungs. So I guess we have to wait again to see if they can figure out the cause or he gets better....whichever comes first. I leave a week from yesterday to go back to Madison for another visit and I am really looking forward to getting to spend more time with dad.

UPDATE (12/14/08): Dad's been sent back to the oncology wing at St. Mary's. There seems to be no definitive cause for his breathing problems. The doctors think that he might have some cardiac problems, but there isn't much they can do about them right now. He's not strong enough to be able to get through any surgery or heavy procedure. So I guess it's wait and see, and hope that there aren't too many other complications.

Dad Update - Chemo Cycle Two and complications

So dad went in to St. Mary's as planned on Saturday to begin his second cyle of chemotherapy. Things seemed to go pretty well for the first couple of days: not too many side effects, blood counts were good, no fever, etc. Yesterday I called and he had been transferred to the medical intensive care unit. Apparently he began having trouble with his breathing and they were concerned that they might need to intubate him. Fortunately they did not need to do this, instead they placed an oxygen mask on his face to help him breathe better.

They couldn't immediately determine what was causing the respiratory distress, but the staff seemed to think it could be a couple of things. The first option was that it might be a reaction to the chemotherapy drugs... a side effect that occurs in about 30% of patients. This would be bad, these chemotherapy drugs are the only treatment option dad has and without the treatment the doctor believes he might have only a matter of weeks to live with this type of cancer. So we were all hoping and praying that it wasn't that his body couldn't tolerate the drugs.

The second option was that he was possibly having some cardiac issues. This was unsure though because he didn't seem to be exhibiting any major cardiac symptoms. So this was a theory that relied on the "wait and see" method.

Dad was also running a fever and had some elevated white blood counts (this is good, rather than having no white blood cells at all!), both indicating that there may be some sort of infection. This could also have caused the respiratory problems as well. They started him on antibiotics right away.

This morning I spoke with his oncologist who explained that he didn't think it was a reaction to the chemotherapy, much to my delight! Thank God that it's not likely a side effect, that would be very difficult to deal with and treat. Rather he said that dad's blood cultures came back as positive for infection. They still haven't determined exactly what kind of infection, but the nurses say he seems to be responding to the antibiotics well. He doesn't have as much of a fever, or none at all - so this is very good.

Through out the whole ordeal he has struggled with some confusion and agitation. They needed to give him a sedative last night because he was becoming increasingly agitated with the mask, and he needed to calm down a bit. It seems that dad is very sensitive to sedatives, the couple of times he's had them he always experiences heavy side effects the next day. Like the last hospital visit, he was confused this morning and has had great difficulty in speaking. It's difficult for him to articulate words and responses. I spoke with him last night, this afternoon and tonight and he seems to be making remarkable progress in this respect. So I will be hopeful for some more improvement tonight.

UPDATE 12/5/08: Dad was moved back to the Oncology wing... it seems that his breathing improved enough and his infection was responding well enough to the antibiotics. He's happy to be back on 5SW but wishes he were out of the hospital...they apparently have him on a "soft diet" to avoid swallowing problems. He's not liking that!

Updates on Dad

Dad had his appointment with Dr. Prendergast yesterday afternoon, and apparently his blood counts are up enough that he can begin his second cycle of chemotherapy on Saturday. So Saturday morning he will be checking into St. Mary's again to continue with the chemotherapy (this cycle is supposed to take five days, but he could be in there longer depending on his blood counts). He has another appointment with Dr. Kahl at the UW on Wednesday - Dr. Kahl has a bit more specialization when it comes to Lymphoma's and so we're looking forward to his review of dad's case. I'll update when I have information from that appointment.

I'm still trying to figure out when I can visit next...unfortunately tickets are outrageously expensive due to the holidays. I would love to visit once before Christmas, and I was hoping to also be home for Christmas as well. It seems like there should be some discount if you are traveling to see ill family members for the holidays. It's hard to think that I might not be able to visit during the holidays.

Leaving Madison

Actually I left yesterday, but was too exhausted to write any entry. It was a long and difficult weekend, and I am glad that it is passed. I spent a good majority of my weekend at home cleaning dad's apartment for his potential return to it. Due to the extent of the chemotherapy and it's adverse affects on his immune system, Mariam and I (with the help of Asha and my mom at times) cleaned dad's apartment thoroughly in order to minimize any chance of infection. This was hard work, and very draining.

Medically speaking, dad seems to be doing okay. They've given him several units of blood over the last few weeks and also given him shots of a medication called Neupogen that is supposed to stimulate blood growth. Dad's white blood count was up to a whopping 600 yesterday when the nurse checked his chart (normal white blood count is 4,500-10,000). So that means he's got something. Because of the improvement they are going to let dad out of the hospital tomorrow.

He could have left today, but yesterday we spoke with the social worker and as a family approached dad about transitioning to a nursing home while he undergoes chemotherapy. This is a difficult and an easy decision all at the same time. Difficult because it is not where he would like to be going, but easy because it is the healthiest place for him to be while he is trying to recover and undergoes treatment. After discussing it with dad, he agreed that it might be the best place for him and tomorrow he will be transferred to Middleton Village nursing home. We are hoping to eventually transfer him to Oakwood Village, as it is closer to family and Aunt Miriam works there.

It was a really difficult trip back to New York City. I had a hard time holding back the tears, thinking how sad dad seemed at the idea of a nursing home. I'll admit that a lot of it was probably exhaustion (and that fact that I hadn't had a moment to pause in five days), but it was much more difficult emotionally speaking than I had anticipated - especially knowing it was the best thing for him. It is harder than you might think to convince your parent that they belong (temporarily or not) in a nursing home.

I think in the next few months it will be very important for dad to have visitors (this is for any of his family or friends who are reading this blog), so please be sure to try and visit him or take him out of the nursing home every once in a while (although cautiously! his immune system will be compromised and he cannot risk infection!).

In the meantime, I am searching for the next flight back to Madison for me. Keep him in your prayers....

Back in Madison

So I've just traveled back to Madison to help take care of my dad's situation. I've spoken with another doctor who came highly recommended from my boss at work (the Chairman of the Department of Medicine and a former president of the American Society of Hematology).

The bad news is, it is definitely stage IV cancer, because they found cancer in his bone marrow. This of course is the highest stage/most advanced form of the cancer. This is scary to think just how bad the cancer is, and how complicated this will be for dad given his health history and the aggressiveness of the cancer.

Also interestingly enough - the chemotherapy is much more intense than I had previously understood. They have dad on a Modified Magrath (CODOX-M/IVAC) regimen for Burkitt's Lymphoma. So this whole time my dad has been in the hospital (the last two weeks) he's been receiving the chemotherapy, what I thought was the whole four cycles over the last 14 days. I was mistaken. This last hospital visit has only accomplished one of the four cycles. So...his chemotherapy will go through February probably, as it goes like this: 15 days chemo - 21 days recovery - 5 days chemo - 21 days recovery - 15 days chemo - 21 days recovery - 5 days chemo. So now the concern has shifted to what kind of toll this will take on dad. I'm not sure that he will even be able to remain living in his apartment. So we are not entertaining the idea of how to transition him to a hospice or nursing home. The problem is that, according to the doctor, there is a 10-15% chance of "fatal complications" from the chemotherapy alone. Fatal complications meaning a severe infection. The chemotherapy is so intense that it will basically destroy his immune system practically speaking. This would make him susceptible to any sort of infection. So we have to make sure that through out his treatment he remains in a healthy environment (something that I don't think he'll be able to maintain without someone being heavily involved).

So this is where we're at. I am in town and will meet with his doctors and my family to try and determine where we go from here. Of course, updates will come.

A brief pause...

I'm worried. Yesterday evening I received some very bad news, well...my dad received the bad news mostly. He's recently been admitted to the hospital for reasons that are not pertinent to the following information, but after a bone marrow biopsy the doctor has told him that he has Burkitt's Lymphoma (a cancer).

This is a very rare type of Non-Hodgkin's Lymphoma that affects some people with suppressed immune systems who have been infected with the Epstein Barr Virus. As you all know, my dad has previously had non-Hodgkin's lymphoma (1996) and a liver transplant (2003), so he was at a significantly increased risk for cancer.

We're still waiting for the exact staging of the cancer, they have done a spinal tap today to see if it's reached his central nervous system. If it has, then his prognosis is considerably worse than we would like. Tomorrow he will start an intensive 5-day inpatient chemotherapy treatment, because this is an aggressive cancer the treatment needs to meet it as such.

I'll give updates as often as I have the information.