Funeral Arrangements

The Funeral Mass will be at 10:30 on Saturday, Oct. 2nd at St. Joseph Catholic Church
600 S. Jupiter Rd, Richardson, TX 75081
A lunch will follow for all who attend.

The Vigil will be at 4:00 on Friday, Oct. 1st at St. Joseph as well.

If you will be coming from out of town, and need a hotel room, please contact me. I am trying to organize a block of rooms.

Thank you for all the prayers. We're all having our moments, but we know we have the love and support of our family and friends to get us through this.

Parting

May the Angels lead you into paradise; may the martyrs greet you at your arrival and lead you into the holy city, Jerusalem.

Paul died peacefully this morning, September 18 at 12:00 noon.

Funeral arrangements will be announced soon.

Friends you've never met

Months ago when all this started, I came across a blog about a man with Hepatosplenic t-cell lymphoma and his family. The man's name was Ryan Hess. Ryan had a type of non-Hodgkins lymphoma very similar to what Paul has. I fact the doctors thought for awhile Paul did have Hepatosplenic lymphoma.

I was hooked on the blog immediately. Ryan's wife Margie is the primary writer of the blog with Ryan having made a few contributions as well. Team Ryan Hess is perhaps the most gripping, inspiring, faith-filled, funny and sad blog I have ever read! I was so moved by the blog I contacted Margie. We corresponded once before Margie published the heart-breaking news that Ryan was in hospice and only expected to live a couple more weeks. Wow! Margie and Ryan got busy doing and sharing all those last things you'd want to do with your loved one if you knew your time was ending. Ryan ultimately died peacefully three weeks after the announcement.

Since then Margie has continued to publish stories about her and Ryan, and life after Ryan's death with her and their adorable two kids. Despite how busy she is, she still very graciously posted something about Paul after I contacted her asking her for prayers. Please read her entry and if you have time read her blog as well. It is one of the most worthwhile uses of the Internet I have seen.

Please keep Paul in your thoughts and prayers. We are in Paul's final few days of life on earth. Heaven is awaiting him!

Ups and Downs

We've been home a month now. Our last trip to Houston was right before I had to be back at school. It was a pretty busy visit. Paul had a test called a cistrenogram to check for his suspected cerebrospinal fluid leak. We weren't notified of any abnormal results from the test, so for several weeks we assumed nothing was wrong. Then a call came three weeks ago saying Paul did have a leak and it should be fixed as soon as possible. However, Paul was having a feeding tube placed the day the MDACC doctor wanted to fix the leak. So it was determined we could wait two weeks until Paul was better nourished.

Fast forward two weeks and things have changed significantly. I am sad to write that Paul has entered hospice care. We don't know when our time together will be through, but we ask all of you to pray and hope that we have some quality time to make more lasting memories together. If you would like to visit you are welcome to. Paul is feeling well enough to spend time out of bed a great deal of the time.

On the very bright side, Paul was Baptized, received First Communion and Confirmation two weeks ago. The new pastor at St. Joseph, Bishop Doug Deshotel came to our house to perform the rites. Paul and I are both very happy and it brings us comfort.

Please keep all of us in your thoughts and prayers as we go take Paul's final journey together.

Generosity

The first day of school is always a fun day but this latest one was very special. Almost as soon as the bell rang, two very eager, young 4th graders appeared in the library. Keep in mind the library just opened this last Friday, so I was not expecting to see any students in the library the first day of school. Well, these two students stopped in front of the desk and looked at me very excitedly. The smaller one, sporting a summer buzz cut bent down to his backpack and pulled out an orange envelope which he put in front of me. I thanked the boys and was going to open the envelope later, when the taller boy said "Open it now!". So I did. Inside was a very sweet card of encouragement from the two boys and a stack of money. What I saw were ones, so I figured it was probably about $30 or so. The two boys explained that they had a lemonade stand over the summer with the purpose of raising money for Paul and I! And then the taller blurted out, "it's $245 dollars!" I was shocked and touched, I teared up! These two boys so impressed me with their generosity and selflessness. It really reminds me what a difference each person can make in this world. Their heartfelt gesture has touched me so much and the money they raised helped as well. One unselfish act to help another person can really make a difference!

Balance

I haven't written in awhile. We've been having our ups and downs lately. Last week was frustrating and not particularly fruitful. Much to our and Paul's oncologists' consternation the hepatologist said it was a no-go on the drainage catheter. As the hepatology nurse practioner said "it's like a direct portal to infection" and would likely lead to a severe abdominal infection and possible death. So Paul will have repeated paracentesis performed either here or in Houston. Paul also had a paracentesis or 'tap' as they are called. The interventional radiologist pulled 4 liters of ascites fluid out of Paul's abdomen! That's after they pulled off almost 5 liters just two weeks before! So Paul's moving around, bending, and breathing much easier than before. I guess that is one fruitful product of last week.

Paul also had an EGD (in case you've never had one, it's a non-invasive procedure where a very thin camera is fed down the throat and used to visualize the esophagus, stomach and the upper intestine) last week. No new developments there though. His varices are slightly bigger but still don't pose a threat in terms of bleeding. The hepatologist decided to leave them alone for a little while longer. Again, we'll watch and wait for any signs that one has ruptured and Paul has internal bleeding. Paul also had a two day respite from his near-constant nausea. After the EGD Paul was having a really bad time despite the anti-nausea drugs he already had, so he was given a shot of Decadron. Like all steroids that drug is a miracle! Unfortunately the effects wear off pretty quickly. But those two days Paul had a much better appetite, more energy, no nausea and all-around seemed to be more himself. It was nice. Too bad long-term Decadron comes with too many downsides to use it more often.

Nausea is perhaps Paul's biggest obstacle to feeling good right now. It keeps him from eating when he wants to, keeps him from keeping down what he has managed to eat, and often interferes with his medicines. One medicine in particular - lactulose can actually trigger his nausea. It's thick, syrupy and far too sweet. We try to mask it in cranberry juice, but even that doesn't cut it. However, the lactulose is essential. It is used to treat and prevent hepatic encephalopathy due to compromised liver function; a dangerous accumulation of toxic substances in the blood, including ammonia, causing confusion, lethargy and eventually death. Paul has had some mild confusion, forgetfulness, and even difficulty writing. These are all signs of mild to moderate hepatic encephalopathy. Fortunately, encephalopathy can be treated by lactulose. It helps the body effectively rid itself of ammonia. Once the ammonia levels are lower, the signs of encephalopathy diminish. We battle this everyday - getting the right dose of lactulose that Paul can keep down while maintaining the delicate balance between not enough and too much.

Today Paul received more blood and magnesium too. Since Friday, Paul's gotten 3 infusions of magnesium. A common problem with cancer patients and liver patients is an inbalance of electrolytes, particularly magnesium. Paul has been especially hard hit with this lately. Magnesium is soooo important, and it's incredibly frustrating that Paul's levels won't stay up. The infusion is long - 2 to 3 hours depending on the dose. Paul has a hard time getting and keeping the giant horse pills of magnesium down, so this is our option for right now. Hopefully today's infusion will stick.

My greatest frustration is that we're in this kind of holding pattern where nothing really changes. It's a struggle when there's no clear end in sight. I also worry what's going to happen when I go back to school in a couple of weeks? I know my parents will help out however they can, but they have their own lives as well. Like so many things with these diseases, we have to find a way to strike the right balance.

FRRREEEEEDDOM!!!!

Paul is being released tomorrow!! We're both just thrilled about it. But the downside is we will only be back home for the weekend. We'll return to Houston Sunday night. Paul has another appointment with the liver specialist at Baylor. We will discuss putting in a drainage catheter for the ascites in Paul's abdomen. This should keep him more comfortable since he won't bloat, and reduce the risk of developing an infection in the ascites. If possible we'll stay the week to have the procedure done. And after that we should be back home for at least a few weeks.

It's also freedom from chemo. We spoke with Paul's wonderful oncologist Dr. Michelle Fanale today. She explained the risks of proceeding with chemo stem not from the drugs they would use, but rather from the amount of fluid they must pump into the body along with the chemo. This in itself contributes significantly to the ascites and she believes this risk is greater than the threat of relapse at this point. We agree wholeheartedly. Especially given how physically weakened Paul was by the last treatment. So we will make frequent trips to Houston for scans and check-ups, but it will be worth it for the peace of mind knowing Paul is well monitored will bring.

I would like to take a moment to thank everyone who has written, spoken to me or offered prayers and thoughts for Paul and our family. I would also like to thank Mr. Chris Bartkoski and his son Jacob for their generous donation of over 20 days of hotel points. Their contribution has allowed us to stay in a very comfortable hotel near the Medical Center for most of our trips to Houston. Paul and I have used most of the days and have reserved the remaining days left for follow-up visits. Also, a big thank you to the Faulk Foundation established by my Alpha Gamma Delta sorority sister Katie Faulk Clapp, her husband Jimmy Clapp, and her mother Carolyn Faulk (I met Ms. Carolyn Faulk while at A&M and vividly remember the experience - they are one dynamic family :-) ). While the foundation's normal mission is to help children with devastating illness and their families, they made an exception to benefit Paul and I by providing a parking chip for mdacc that should last for several more visits and a very generous gas card. You can find more information about their foundation at: http://www.faulkfoundartion.org Not last and most certainly not least a big thank you to the familes and students at St. Rita Catholic School. The school pulled together a fund raiser last spring that helped Paul and I pay medical bills and cover some expenses for the summer. The staff also got together and in an equally generous act provided gift cards for food and gas that has gotten us through a great deal this summer. Thank you also to the St. Rita primary staff who early-on provided meals and gift cards. Thank you St. Joseph Catholic School families and staff for providing many delicious meals and money for food. Thanks also to our neighbors for their varied and thoughtful acts. And lastly thank you all to our families and friends for your love and support. Thank you everybody!!! You are all in our prayers. We are truly blest to have you all in our lives. You are proof of the goodness of people and God's grace.

Fear not lest you think I am ending this blog. We still have many miles left on our journey which I shall faithfully record. I just wanted to thank again everyone who has acted in any way on our behalf these past 7 months.

Well, that's interesting

This is the middle of our second week in Houston. Paul has been inpatient since July 5th. But he isn't receiving another cycle of chemo as we had anticipated. Instead the first week was spent looking for a possible cause of some subtle mental confusion Paul has had. Nothing major, just some short term memory lapses mostly. They ruled out all the big things - no new tumor growth, no problems with the brain visible by CT, no new liver problems, and no infections of the gut or in his ascites. So they basically chalked it up to a combination of liver disease, fatigue and chemobrain.

The cycle of chemo he had 5 weeks ago really did him in physically and he lost a great deal of strength. So last Friday Paul was transferred from the lymphoma unit to the rehab unit here at mdacc. He's doing well in rehab; working very hard at physical therapy and occupational therapy. Which both amount to pretty much the same thing for him - exercise.

Paul has occupational therapy first thing. They work on standing endurance, some large muscle group work, and some fine eye-hand coordination. Yesterday Paul worked a puzzle standing up and today he played Jenga with the OT while standing up. After an hour rest Paul returns to the rehab gym for group pt. In this group they do a sit and be fit style routine using therapy bars for some of the seated work. During rest periods they do an almost group counseling session or they play a game. Today it was Outburst. No teams or anything, just whoever thinks of an answer shouts it out. It's fun and they even include me so it's a break from the monotony. It can get us talking as well. Paul is one of the most able in the group right now. A large percentage of patients in rehab had spinal or brain surgeries for their cancers. It really puts things in perspective for me when someone about my age casually mentions they are learning to walk again!

Paul's final session of the day is one hour with the physical therapist. They walk to build Paul's endurance and they are working on going safely up and down stairs. Paul is doing well with this and she says she's confident Paul will be able to use the stairs at home.

In the midst of all this we've been dealing with two other issues. Paul is nauseous all the time. He has two nausea drugs on board at all times and he still is throwing up occasionally. But it's better today and he's managed to keep down a little food and some important medicines that can't be given IV. Here's hoping on that. It is the one big obstacle to being discharged on Friday.

The other issue I find quite fascinating. Paul has has an ear/hearing/voice issue I've mentioned in earlier posts. When he sits or stands in an upright position for awhile his ears close off and he hears his own voice very loudly. Much like talking with ear plugs in. That in turn causes Paul to lower his voice to a whisper and sometimes he's barely audible. Occasionally his nose will start dripping a clear, thin liquid. It doesn't resemble mucous and it happens even when he's inactive but sitting up so it's not sweat. So what is this mysterious liquid? Well there's three possibilities we've been presented with: 1) allergies - but we all doubt it since Paul has been here for 15 years and never had a problem, 2) an infection - but he's not showing signs of infection, or 3) it could be a slow leak of spinal fluid! The tumor that originally was biopsied and diagnosed was quite large and we know had inervated some bone. It also responded very well and retreated quickly, potentially leaving a hole somewhere in the thin bone dividing the brain from the sinuses. We've tried to collect the fluid for a test, but there hasn't been enough to do an assay. We're holding off on more invasive, aggressive testing for now since it's not dripping very much. Next time we return to Houston, Paul will do a two-day outpatient test to try to determine if and where a leak might be.

So that's where we are right now - two steps forward and one leap backward, but hanging in there all the same.

A Bedtime Story....

It was a dark and lonely night. Paul was tired, confused and cranky. Despite the fact Monica had a nice bed waiting for her, he wanted her to stay in the room with him. So Monica agreed. Now fortunately mdacc has Murphy beds in each room for caregivers who stay the night. The nurse was informed and sheets and blanket were brought to Monica.

The Murphy bed was housed in a handsome, burled-wood veneer cabinent, showing little signs of wear and probably the product of a recent remodel.





The bed pulled down with a creak and a sharp crack rang out when the bed hit the floor. Monica screamed at the sight of a white naugahyde headboard.





Calming, she saw the mattress was black and covered in crinkly, plasticized fabric. A mottled brown, web, strap held the mattress to the bed platform. Looking at the strap, Monica guessed the bed itself was over 30 years old.






Telling herself, "it's ok, they must sanitize the mattress," Monica began to make the bed.

Paul turned out the lights and Monica laid down. The thin, single mattress creaked and whined. As Monica lay there she felt the springs pop up against her back, legs and head. With her hand she traced the outline of several springs, clearly felt through the thin mattress padding.

Trying to block out the fact the mattress was old and had a musty smell was difficult. Monica willed herself to fall asleep quickly. But since she was tired Monica fell asleep in little time.

All seemed well until suddenly, in the early morning, Monica awoke with a start, wheezing and short of breath. As she suspected while making the bed the night before the mattress was old and dusty, causing the unusual asthma attack. Fortunately, Monica had her inhaler nearby and within a few minutes the quick puff made the attack recede. Monica was able to go back to sleep for a short time until the morning busyness of the hospital forced her from bed. Monica pushed the bed back up into the cabinent, grateful the long night was over.

Fini

I hope you enjoyed the story. This is actually an amalgum of several nights I have spent in Paul's room at mdacc. The hospital is normally so supportive of caregivers and the rooms have obviously been remodeled in recent years; I find it odd the bed and especially the mattresses are so old. They clearly date to the late 70s or early 80s. I did find a flier in the family lounge asking caregivers to evaluate bed options for the new rooms created by the Alkek tower expansion. No mention of retro-fitting the current 450 rooms. Don't get me wrong, I am grateful the hospital has the beds and they make it very easy for family and/or caregivers to stay with the patients, but I get a little jealous when I see Paul in the comfiest hospital bed ever! It's a self-adjusting, pressure-relieving air chamber mattress. But I'll get by with my special delivery, Hurricane Ike surplus eggcrate on top :-)

So..... What Now?

Well it's the 4th of July and we're in Houston again. We came down on Friday to see the liver specialist at Baylor. And the news is mixed. Paul's liver is not getting any worse and
appears to be recovering some. Tests indicate his liver function is within normal ranges with the exception of bilirubin, which the doctor is not really worried about. The downside of the visit is that we still do not know the origin of his liver disease. The doctor is now speculating it is from fatty liver even though the liver biopsy can't confirm it.

We stayed through the weekend because Paul has an appointment with the lymphoma specialist tomorrow. He will most likely be admitted for his next round of chemo (next to last! Yay!!). So we'll be here for the next week.

We are staying at the Faith House, a guest house run by Faith Lutheran church in Bellaire. This is an extremely low-cost housing option for patients more than 50 miles from home seeking treatment at the medical center. We've been on the waiting list for this and two other similar places. This is the first opportunity that has worked out. If anyone reading this blog belongs to a church in the vicinity of the Medical Center this is a ministry you might want to suggest. It means so much to the people who are helped by it.

Just as a reminder if you are able to give blood and haven't yet this summer - go do it!! Blood banks are running low and 95% of the blood recipients are cancer patients.

Love Your Liver

The liver is probably the most under-appreciated organ in the body. You don't realize how much it does until the liver stops working right. Paul's liver disease is odd - the doctors we've seen so far don't know the origins of his liver problems. All the usual causes of liver cirrhosis: viral hepatis, alcoholism, even fatty liver have been ruled out. That leaves a couple of genetic disorders - hemochromatosis (where the liver absorbs too much iron) or Wilson's disease (too much copper). Hemochromatosis and Wilson's are about the only other 'usual' (for lack of a better term) causes. Blood tests don't seem to indicate either of these though. We're waiting on genetic testing for confirmation.

The only thing all the doctors we've seen agree on is that the chemo exacerbated/accelerated whatever process is going on that damaged Paul's liver. So for now Paul's being treated for the symptoms of the disease, not the cause. We hope some of the blood tests provide some definitive answers when we go back to the liver center next week.

When the liver isn't working up to par a person might become jaundiced, fatigued, nauseous, even mentally confused and the list goes on and on. Paul is fatigued and jaundiced. We're both watching for other signs that the liver disease might be progressing. So far it's not, thank goodness! Hope we get some good news next week.

The trough

After chemo treatments patients experience a decline in white blood cells, red blood cells & hemoglobin, and platelets. All of which makes them fatigued and susceptible to infection. It takes anywhere from a day to a week for a patient to reach the nadir and then another couple of days to a week or so to climb back out again. Each treatment is cumulative, hitting the person harder each time. Paul's trough was over two weeks last cycle. The treatment this week was delayed a week to give Paul more recovery time.

Even though Paul's doing Hyper-Cytoxan instead of EPOCH now, so far this cycle seems no different from the first three. Cytoxan by itself can cause all the classic side effects you think of for chemo. He's feeling the fatigue (hard to tell if that's liver or chemo though), aches, nausea, and edema. Compounding this is the medicine he takes to bring his white blood cell count back up and the medicines to prevent infection. They can cause aches and nausea too.

Poison can heal. It's paradoxical that what makes a person feel worse actually makes the person better in the long run. That's our hope.

Waiting, waiting

A great deal of cancer treatment and caretaking is waiting. I wait with Paul before tests, I wait for Paul during tests, I wait for the results. That waiting isn't so hard believe it or not. There's an expectation with that kind of waiting - hopeful I guess or at least an action to it.

The waiting that is difficult is the kind right now. Today Paul will be discharged, but first he needs blood since his hemoglobin is low. We waited for the phlebotomist to come draw blood for type and cross-match. We're waiting on that result now. We'll wait on the blood to come from the blood bank (by the way, did you know cancer patients use 95% of the blood in a blood bank?) and then we'll wait another 6 hours while the blood is transfused. All before we can drive the almost five hours it takes before we get home.

This is my greatest frustration with everything cancer-related. I'm on hold while others take care of things. Having something so personal beyond my influence is difficult. While it is terrible the amount of fatigue Paul experiences, he does have the respite of sleep. I have a few things as well (one of the reasons I began this blog) but nothing fully and satisfactorily fills the time while we're away and waiting.

FYI - Blood banks run very low during the summer. Please donate blood during the summer if you are able! You will make a difference in someone's life and most likely it will be a cancer patient!

Why is this blog called Sundial Station - Lymphoma Log?

Paul and I came to MD Anderson (henceforth mdacc) during Spring Break for a second opinion, definitive diagnosis and treatment plan. We had originally planned for Paul to receive the recommended chemo at a local cancer center with a great oncologist who is a fellow from mdacc. After Paul's liver complications came into being it became apparent his case was too complicated for anyplace except mdacc (or Mayo but we really didn't want to go to Minnesota for treatment).

So where does the sundial station come in? Well mdacc is just this huge hospital. The main building itself covers two city blocks fully. And let me tell you, from 8 in the morning to 5:30 at night this place is packed. There's cancer patients, family and caregivers everywhere! Thousands of people who are directly affected by cancer come to mdacc a week. It's mind boggling and comforting all at the same time. The really interesting thing is that most of these people are outpatient (there only 450+ beds in the inpatient hospital). So to make both navigating the hospital easier and to give people a place to relax between appointments mdacc has several distinctive hospitality areas throughout the hospital. These lounges have distinctive characteristics which makes them excellent landmarks. They have names like The Aquarium, The Gazebo, The Park and The Sundial. During our first week here while descending an escalator from the 3rd floor to the 2nd, Paul noticed a sign reading "The Sundial". Being the Lost fans that we are this immediately made Paul think of a Dharma Initiative station. We had a good laugh and took a picture of the sign. It became something of an inside joke for us. When I was thinking of names for the blog Sundial Station came to mind pretty quickly. And so this fantabulous blog was born.

Toxic beyond belief

Paul's chemo is heavy duty stuff, so much it's EPOCH. EPOCH takes the standard CHOP regimen and kicks it up. The nurses wear special gowns and gloves, plus masks when they hang the IV bags of it. After 3 rounds of chemo the good news is that Paul is in remission! Yay!!

That's the best response we could have hoped for. The big downside is that the scans also found Paul has portal vein thrombosis (PVT) - a blood clot in the vein coming out of the intestines and spleen going into the liver. Why does Paul have PVT? Excellent question! And we don't have a good answer for it. Apparently Paul had a subclinical (like my fancy new medical term?) condition with his liver. The chemo accelerated whatever this disease is and caused Paul to develop full blown liver disease.

Which brings us to now - we're sitting in a patient room at MD Anderson Cancer Center in Houston while Paul gets his 4th round extremely modified chemo. So modified that they've taken out pretty much everything from the regimen except the steroids and a drug called Cytoxan - they call this new regimen Hyper-Cytoxan. We've also had a visit this week at the Liver Center at Baylor College of Medicine. Of course that means more tests and more waiting for answers, and you guessed it! More driving for me!

So this is the new normal

My husband Paul was diagnosed with anaplastic large cell t-cell lymphoma in Feb. 2010. He had been experiencing headaches since Christmas, and after seeing several specialists he finally saw an ENT who decided Paul needed sinus surgery. So it was really the pathologist that diagnosed Paul when the ENT sent in a tissue sample. And so began our new normal - doctor's visits, tests with 15 vials of blood drawn at a time, scans, and week long hospital stays. Did I mention driving? Oh yes, there's lots of driving too!