Appointment Day/No Bleeding Please

We met with Annette, Dr. Seifker's Nurse Practitioner, today and reviewed the results of Dad's blood work from earlier in the day. Annette is awesome. Annette:Dr. Seifker::Mr. Spock:Capt. Kirk. All his values are down, as they are supposed to be because he just finished a round of chemo. She was concerned about the kidney function, and so Dad's getting some IV fluids right now. I know I've said it before, but they really don't mess around here. It is supposed to take four hours to administer the IV fluids, so we went to the Waterfall Cafe to have some lunch first, and we had no sooner sat down than the IV people called Mom's cell phone to say "come on up, we're ready!"

Jerry is also supposed to avoid bleeding, which is a good policy, I think, for all people, every day, not just cancer patients. Because his platelets are low he should avoid using a real razor blade, use a soft toothbrush, and generally try to keep from cutting himself. Annette also said that in a couple of days Dad's immune system would take a real dip, and he should start to wear his Cancer Mask if he is going to be in a crowded place like a movie theatre, or a bus. She also advised him to avoid opening doors by himself and to let someone else do it because door knobs are filthy. I asked about the Schnauzers because Nolie read somewhere that chemo. patients shouldn't be around dogs. Annette says there's no problem as long as they're healthy, indoor dogs, that are current on their vaccinations. YEA! Dogs good. Cancer bad.

While we will not know definitively whether or not the chemo. is working until two weeks after the third round when Dad gets another CT scan, Annette did say that the fact that his pain is under control, and he hasn't gotten worse is a "hint" that the chemo. is doing what it's supposed to. I guess no bad news is good news.

Good News is something you hear about a lot here. A standard greeting among the Cancer People is "Did you receive good news today?" You hear this as you make small talk with strangers in waiting rooms and elevators. People also inquire if you received Good News on the Cancer Van at the end of the day. On our first visit here, on December 18th, we were waiting outside for the Cancer Van to pick us up, and I asked another couple how they were doing. They both beamed and said that they had received Good News, and that his doctor asked him what he was doing here because he had no cancer. They both seemed so happy, and I keep wondering how long they had been coming here, how often, from where, and how many Bad News days they had compared to Good News days.

We had two hours to kill between the blood work appointment and the Nurse Practitioner appointment, so Mom wanted to show me the part of the campus where the chemo. actually takes place. It is a nine minute walk, according to the directional signage, across a very, very, very, very long sky bridge where they run golf cart shuttles on a regular schedule. Kind of like the golf carts that used to run between the two Hyatt towers at DFW, or like old people ride around in at airports and in Florida. Anyway, Dad walked the whole distance there, then rode the cart back.
The Visa Card Panic has escalated, and I cannot believe it is still not resolved. Nolie cried for two different Citibank people today, and I have a feeling I'm going to be up all night helping her draft a letter to Citibank. At one point during the screaming, yelling and crying, in the Gatehouse, another guest glanced over to see what the commotion was about. I smiled and said that she was sometimes loud and embarrassing, but that she usually gets what she wants. The guest politely ignored us all and pretended we were not in the room.

Hey Opie Taylor, Look At Me!

">

"Copy and Paste" Is Your Friend

We're now a good 72 hours plus into the Throw-up Zone, and Dad still feels pretty good and hasn't lost his cookies. Today he felt good enough to get dressed and go to the Olive Garden for lunch. For anyone who is actually from Italy, or of Italian ancestry, please do not hold this against us. It is close, and even mediocre food is good with Gorgonzola on it. Mom did say that her Cosmopolitan was just as good as the Cosmos at Carmine's in New York.

Dad does, in fact, respond more slowly than usual, and sometimes has to think for which word he wants to use. Mom had told me this before, but I wasn't sure how much of that information had been processed through the Nolie Drama Enhancement Filter. Mom compared it to the scene in Look Whose Talking where Kirstie Alley got the epidural and Bruce Willis, the fetus, got all loopy. Last night he was trying to think of Mom's oncologist's name, Dr. Deur, and went to the kitchen and pointed to a bottle of scotch. I knew what he meant, but Mom didn't catch on quite as quickly.

Dad's chemotherapy is administered every other Friday, for three rounds. The Fridays that he isn't receiving chemo. he has blood work done, which means he has appointments every Friday. Mom's biggest challenge with this is whether to have the future chemo. treatments administered in Arlington, or get to Houston every Friday. My feeling is this: Always take your dry cleaning to the actual plant, not a satellite drop-off location, because the more times your clothes are loaded and unloaded onto or off of a truck, the more opportunity there is for your favorite suit to go missing. This is also why if you ever have to choose, it is infinitely more important to own a washer and dryer than a dishwasher. Socks that go missing from the dryer at home will eventually turn up. Socks that go missing at a laundromat are gone forever, and if they're Ralph Lauren socks, that's $18. My college math professor, Dr. Bob, has a solution for the dishes, but Nolie says it's not appropriate for all audiences. If you would like to know Dr. Bob's solution, e-mail me separately.

Mom is afraid to drive from Arlington to Houston, and says that she can't do it. Here is something I've learned about my Mom over the years. She can do anything she decides that she wants to do, and she's much tougher than she believes she is. When Raider (Kingdom: Anamilia, Class: Mammalia, Species: Canine) died Dad and I were the crying idiots and Mom was the one in the back yard with a shovel.

We gained access to My.MDAnderson.org today, which is way cool. We can log on to see Dad's next appointment, get directions to clinics, and it even has links to explanations of different procedures that may be scheduled. We can e-mail any member of our medical team, and even view billing info. etc. Not only can we view scheduled appointments, we can schedule and re-schedule too. They are so on the ball here. The best part of gaining access was that we had to call M. D. Anderson to have them e-mail us a temporary password. It wasn't one of those easy temporary passwords like Socket15 either. It was one of those random ones like z974kqkk1powie6. Nolie actually started to write down the temporary password--on a piece of paper--with a pencil--so she could go to the site and type the temporary password in. I recognized this as a teachable moment, and seized the opportunity to teach my Mother about the joys and wonders of "copy & paste."

The Missing Visa Card Panic is still not resolved, for those of you tracking this particular saga. A new Visa card was to be overnighted via UPS three days ago. It still has not arrived, and today we learned that the reason is because the ZIP code on the telephone in our guest room is wrong. The phone says 77080, and the letterhead on the Manager's Welcome Letter says 77030. Apparently, UPS couldn't figure it out, which is OK, I guess. I don't know how to run an overnight delivery company, and I'm sure there's quite a lot more to it than most people realize. I learned the hard way once about the importance of proof reading carefully, so I can't really fault anyone for the mistake.

Supper tonight at the RIBM was tacos. Here is a picture of Dad making his tacos.

There's a link to some pictures I took today in the "links" section, or you can view them by clicking here.

So Far, So Good

This was a better day. Jerry’s blood pressure was normal. If it had remained high, I would have taken him to the ER. He walked around the courtyard several times today whereas yesterday he could hardly get out of bed. I think that he was over medicated on pain meds. Today he was able to get by with the 12 hour pain medicine and not have to use the 6 hour one also. Brian arrived tonight which was a treat. We watched The Da Vinci Code together. We miss our TiVo where you can stop the film and back it up and re-watch something. So far, so good.

Love, Nolie

Sphygmomanometer Is Fun To Say and Type

Today is supposed to be throw-up day, but Dad hasn't thrown up yet. Maybe that's a good sign, maybe not. His temperature is still normal, but his blood pressure is still a little high. It did come down today from a high of 187/100 to 151/83. When the hospital called to check on Dad today, and Mom told them about the blood pressure, they suggested that perhaps their sphygmomanometer was not working properly. I am happy to report that I spelled sphygmomanometer correctly the first time just now without having to look it up. I did look it up though to make sure I was right. So, Mom walked to CVS to buy another sphygmomanometer. My parents now own a total of three sphygmomanometers. I remember my grandparents having a few sphygmomanometers lying around the house in Laredo, and I think they had one or more at their other house in Leaky too. In fact, I also remember my Aunt Pete (yes, I have an aunt named Pete.)travelling with a sphygmomanometer, which is why I know how to spell that word because I was playing with hers one Thanksgiving, and I remember that it said "sphygmomanometer" right there on the front of the dial. All the old-school ones do. I think the older you are, the more sphygmomanometers you acquire. I wonder when I'll get my first sphygmomanometer--I wonder how many Jack LaLanne has. Anyway, it turns out the first sphygmomanometer was working just fine.

The next big day is Friday. Friday Dad has an appointment with the Nurse Practitioner, Annette. Hopefully, we'll learn if the chemo. is doing anything. I think she's going to take some blood, but that's all I know for sure. We met Annette at College Orientation, but she didn't say much then. She just sat quietly taking notes.

I posted the pictures that Mary Jo took yesterday. There is a link to them in the "links" section to the right, or you can view them by clicking here. The Kodak Easyshare gallery should load in a new window.

Whew! I think I know what it's like to be Andrew Lloyd Weber now. You know how he never, ever, lets you forget the title of a song because it is repeated over, and over, and over, in the lyrics? Well, I'm not going to let anyone forget that in this post, we're talking about sphygmomanometers!

A Visit From the College Station People

Following is an e-mail from my Aunt, Mary Jo. I'll work on getting the pictures up tonight.

Brian--Thought you might like to have a few Christmas pictures to share on the blog (or not, as you see fit). We visited in Houston for about 2 hours this afternoon. Both your Mom and your Dad looked good and seemed in good spirits. Your Dad was in no pain and was, I think, a bit "buzzed" from the combination of the oxycodone and the oxycondin (don't know if I've spelled either of those correctly, but you get my drift, I'm sure). Your Mom was upbeat, positive, and "factual.,"She came close to tearing up only once, but Don stepped in and smoothly changed the subject. she recovered quickly, and Grandmother was quiet. Grandmother didn't say two words for about the first 30 minutes because she didn't want to upset your Mom.

In two of the pictures your Mom and Dad are looking a cartoons that Don brought along, one is your Dad solo, and the other is the "group." Again, use them or not at your discretion. Also edit this message if you care to use any of it.

Again, thanks for the blog. Merry Christmas.

Love,
Mary Jo

A New Facial Accessory Just In Time For the Holidays

Here's a quick Christmas Day update:

Dad's blood pressure is down. 122/76 this morning; however, his temperature is rising, but has only risen to normal (37 degrees C, thanks David C. for the conversion formulas). Mom also reports that Dad seems to take a little longer than usual to process information, but I think he might just be ignoring her.

Mom was wondering if Jerry would get a mask to wear after his chemo. treatment, and he did! Now he can be cool like all the other sick people at the RIBM complimentary breakfast. He only needs to wear the mask when he will be in crowded places, or around sick people, because on about the fifth day after chemo. the immune system weakens dramatically. I guess I'll have to stop making fun of people I see on planes with masks. If I had one, I think I'd draw a little mouth and nose on it. Here's a picture I took on vacation recently of a guy with a mask. I've just been calling him SARS guy. I took this picture surreptitiously at the top of Sydney Tower, because I thought it was funny.

Nolie is working on a country song titled "Freezing My Butt Off In the Laundry Room of the Residence Inn on Christmas Day." I think Uncle Dick should direct the choreography for the video. Nolie also has asked if I could teach her how to forward e-mail when I come visit next. No, it doesn't work when I try to talk her through clicking on the forward button, I have to show her.

By the way, for those who are curious, the Visa card was not in the L. L. Bean shirt pocket, so the card as been cancelled.

Merry Christmas, and check out the fancy hit counter I found at the bottom of the page.

Get Ready, We're Converting To the Metric System Any Day Now

This just in. . .

Mom and Dad are back at the RIBM and Dad hasn't felt any nausea from the treatment. Apparently the longest part of chemo. is the final drug, called Mannitol. The Mannitol takes ten hours, and is used to flush the kidneys. His blood pressure is a little high at 176/99, but Mom attributes the high blood pressure to the Missing Visa Card Panic, and not to the chemo. Dad seems to remember someone at the hospital asking to see his ID and his Visa card. Mother says that this did not happen, but the Visa card is missing from his wallet and Jerry is adamant that he was asked to present it at some point during his chemotherapy treatment. Mom called Visa, and the last time Dad's card was used was when he picked up the Schnauzers from their bi-weekly grooming appointment. Nolie has deduced that the missing Visa card is in the shirt pocket of Dad's L. L. Bean Chamois Shirt that he wore that day. Wayne has been dispatched to Kingsborough Drive to corroborate this deduction. The same thing happened to me on the way to the New Orleans airport on the way to Houston last Sunday when, on the airport shuttle, I was unable to find both my American Express card, and my driver's license. They were in my shirt pocket that I wore the last time I was on a plane. Has anyone ever tried to get on a plane without a photo ID? Prepare for inconvenience whenever you see SSSS on your boarding pass.

Mom has to take Dad's temperature every three hours. They are so helpful at M. D. Anderson. When Mom asked if they had a thermometer she could take with her so she wouldn't have to find a drug store in the rain, they cheerfully gave her one. Free. Scaled in Celsius. If Jerry's temperature reaches 38.3 degrees she is to call for a shuttle to the emergency room. I believe 38.3 degrees Celsius is about 101.0 degrees Fahrenheit, but Kyle, Uncle Dick, or Aunt Shirley would know for sure. (Mathlete, Canadians). I did not ask Nolie for any additional detail about the thermometer. I cannot tell you how many thermometers we have thrown away and replaced because no one could remember if it was the people thermometer or the dog one.

Dad is now taking fourteen different medications, twelve daily; and this number is down since arriving in Houston. Dad still feels comfortable, and really, really, liked the chemo. nurse. She had a good tip that she has heard from several patients before: Popsicles are really good for controlling nausea and relieving the discomfort of mouth ulcers, which will develop as a side effect of chemo.

Thank you to Uncle Don, Aunt Mary Jo, and Lomamma, who are going to visit on Christmas afternoon, which will be really nice. I will be there sometime on Thursday, and am not sure yet how long I can stay, but it well be at least a couple of days.

First Day Of Chemo.

Just a quick post before I go to bed. I just got off the phone with Nolie, and as scheduled, Dad had his first round of chemotherapy today. The appointment was scheduled for 2:30 p.m. (in Texas we would say it was scheduled at 2:30 p.m., but in New Orleans they say for. They also make groceries here instead of buy them.) Anyway, Mom says that Dad feels better today than he has in a long time. He has no pain and had a great appetite for lunch. The first chemo. drug took 1.5 hours to administer, and the second, which is going in now, takes 3 to 3.5 hours. They're keeping Dad in the hospital tonight, and if all goes well they shoud be back at the RIBM tomorrow afternoon. They also did the biopsy on the mass outside the bladder, but results are not available yet. That's pretty much all for today. Of course, I'll post more as information becomes available. Now I'm going to finish my Southern Comfort Cajun Eggnog that I got at the daiquiri drive-thru, and go to bed. You can only get Southern Comfort Cajun Eggnog at this time of year.

Jerry's day 12/21/06

Here is the e-mail I received from Nolie today.  She composed this from the notes she took today.  I'll take a large personal break for $2000 Alex.  Can't we get even a sliver of good news?  I will say this.  I like that at M. D. Anderson they serve it up to you straight.  In Dallas the urologist and oncologist, and surgeon were all, "yeah, umm. . .well. . .it's bad, MKay.  Nolie's post follows:

Jerry had the exam under anesthesia today and the tumor has adhered to the pelvic bone on the left side.  It cannot be moved and so he is not a candidate for surgery.  The urologist said that the  outlook is very grim and chemo-therapy is the only option and to hope for a "gangbuster result" which happens in 20% of cases.  He said that radiation was not an option at this stage.  He did not repeat the biopsy of the bladder because there was no point in doing so.  He believes that it is all one cancer that has been growing for years.  He gives him 3 to 6 months unless the chemo  is extremely successful and then 15 months.  He said he was sorry to have to tell me but I needed to know so as to get his affairs in order and make final arrangements.  He then turned to walk away and I started to cry so he turned and said "Are you alright, do I need to find someone to talk to you".  I said "no".

 

Then we saw Dr. Lin in Dr. Siefker's office.  He discussed pain management, showed the ct scan pictures to Jerry and explained to Jerry how dire it is. He prescribed Oxycontin and Oxycodone. Dr. Siefker came in and went through the scans again and said that it is not cureable but is treatable.  She is going ahead with the needle biopsy of the mass assisted by the ct scanner.  Then Jerry will be admitted to the hospital for 24 hours for his 1^st round of chemo will be administered every 2 weeks.  She has chosen Cisplatin, Gemcitabine and Ifosfamide.  She does not think his body can handle MVAC.  If he tolerates it well, she can try something stronger.

 

You can paste this to the blog or forward it as e-mail or rewrite it.

Love, Nolie

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

College Orientation

As everyone probably already knows, my dad, Jerry, has metastisized stage IV transitional cell cancer of the bladder. It was diagnosed on the Monday before Thanksgiving and Dad went to M. D. Anderson Cancer Center in Houston for a second opinion on diagnosis and treatment this Monday December 18th. Nolie had suggested starting a blog to keep people updated on Dad's progress because when she talks to people, she cries. (Note to self: white wine intensifies Nolie's crying. Make sure she sticks to scotch.) I told Nolie I would help her start a blog, but it is quite an undertaking trying to teach my mother such basics as the difference between a web address and an e-mail address. In the mean time, I thought I'd start this with the hope of passing it over to Nolie at some point, or maybe we can both post, or just see how it evolves. Anyway, here's the low down on Jerry for now.

The first day at M. D. Anderson is much like the first day of college orientation. We arrived at 9:00 a.m. for our scheduled appointment and were given our itinerary for the day. There were many tests already scheduled, and some were cancelled after meeting with the oncologist because they were already performed in Dallas, and we brought those test results with us. We were asked to complete The Eight Page Patient Information Form which included questions about cancer history, job history, exposure to chemicals, and my favorite, "tools used in your profession." Dad listed a computer and a slide rule as his tools, and the RN actually said to us while reviewing the form, "What's a slide rule?" We were also given a campus directory and our Student ID, which lists all the key players and their direct contact numbers on our team: Oncologist, Registered Nurse, Nurse Practitioner, Patient Services Coordinator, and Patient Advocate. My friend, Winnie, says to get to know the Patient Advocate very well.

Arlene Siefker-Radtke M. D. is our oncologist. She totally rocks! She kind of looks like Sally Struthers did when she did All In the Family. She does not look like Sally Struthers does today. Dr. Siefker is very easy to talk to and very easy to understand. In addition to cancelling some of the scheduled tests, she added some different test including a MUGA test; a procedure under anesteseia to determine it the tumor has adhered to the bladder, or is "floating;" some blood work; and a chest x-ray. All of these tests are to determine how well Jerry will be able to withstand chemotherapy, and thus, how aggressive a chemotherapy regimin to persue.

In the shuttle on the way back to the hotel from a day of tests yesterday, Dr. Siefker called Mom to say that she had just reviewed Jerry's abdominal CT that was performed at Zale Lipshey in Dallas, and she wonders if the part of the tumor outside the bladder could actually be a second, separate tumor, and not the bladder tumor that has spread. She thinks this may be the case because the growth is exactly where some lymph nodes were removed when Dad's prostate was removed a couple of years ago. I think that's good news, but I'm not certain. I feel very strongly though, that we never would have learned this if we hadn't gone to M. D. Anderson. He is having a biopsy on that growth today, which may affect what type of chemotherapy Dr. Siefker recommends. Also, Dr. Siefker was not able to say for certain whether the cancer has spread to the bone. There is edema of the hip bone, and the bone is definitely being affected by the cancer, but that is all she is certain of. Dad's low blood count is not necessarily an indication that he's not making blood, but is most likely the result of blood in the urine that is too little to see, but enough to affect his blood count.

We are all very impressed with M. D. Anderson, and I'm very glad Dad chose to keep the appointment. I believe he meets with Dr. Siefker again around 2:30 p.m. CST today, and we should have more information then. She felt like he would begin some form of chemotherapy this week. Everyone we encountered was very nice, professional, and seemed to know what they were doing. Even the Waterfall Cafe seemed more like a Whole Foods than a hospital cafeteria.

I'm not sure how often I'll update here, as this may end up being one of my many fleeting obsessions like TiVo, steam cleaners, or Roomba, but it's too soon to tell. I'll probably send an e-mail whenever Nolie or I update, so if anyone would like to be removed from the list, please let me know. Also, please don't think that I have too much going on to answer the phone. It actually feels good to talk about it, and if I am too busy to answer when you call, please leave a message and I'll get back with you soon. I know some don't have regular access to the Internet (Aunt Sandy), so please do check in with Mom and me. Mom & Dad are staying at the Residence Inn by Marriott Houston Medical Center/Reliant Park.

That's all for now. More to follow.