Here's the scoop

Our adventures in St Louis started with the apptmt with the oncologist Dr. Tan Tuesday, who, knowing we were from clear across the state, made special effort to get everything possible done in this trip. He got us right in to see the radiology oncologist that day, and then scheduled a CT scan (by their more expert operators) on Wednesday morning so they could really see exactly what / where the tumor still involved. They were also working on getting us in to the surgeon immediately, so we extended our stay through Wednesday night. 

After the CT scan on Wednesday, I took a side trip (more of a running dive, actually) down a flight of stairs outside the hotel (oops). It was really my lucky day - landed on concrete at the bottom, head first  (yikes), with only a slightly bent thumb and knee to show for it. Very lucky. Really should get the video from hotel security - sure it would be hilarious to watch....the next youtube sensation. Hahaha.

Dad's CT scan was reviewed by their conference of experts on Thursday morning (radiologists, oncologists, surgeons) and then we met with the surgeon Linehan - who does two of these surgeries per week, so right up there with Strasburg - one of three they have on staff at Barnes Jewish with this extensive experience.

They believe it is curable by operation (yeah!) but that the tumor still involves a vein, and that shrinking the tumor further will increase the odds of success. So they recommended the focused radiation I have read about online (studies at Stanford and USC, I believe); this involves a "metal marker" placed in the tumor, and then special equipment which ensures all radiation is focused directly there.  Here's the plan:

Feb 1 Tues:   One more chemo treatment in Joplin.
Feb 2 Wed:   Followup Neulasta shot in Joplin (shoots up the white cell count to ward off bugs). Then we drive to St Louis for a couple nights.
Feb 3 Thurs:  Barnes Jewish Ctr for Advanced Medicine, downtown St Louis: two operations in one, to place the metal marker in the tumor, and to replace the stint for his pancreas (as a precaution).
Feb 4 Fri:   We'll drive back home, then have to head back to St Louis on Sunday.
Feb 6 Mon: "Planning Session" in St Louis, where radiation experts plan how to direct the radiation.
Then a TWO WEEK WAIT for dad to build up his strength and be prepared for 5 weeks of chemo and radiation together.  Let's all hope he withstands the treatments (no nausea, etc.) while continuing his great response he has had to chemo so far (shrinking the tumor).

Radiation / Chemo will be in St Louis downtown starting sometime around Feb 21; we hope to stay at Hope Lodge near the hospital Monday thru Thurs, then come home on weekends. The radiation takes about 10 minutes, 5 days a week, and chemo one day a week for an hour. That's end of February through March.

After radiation, they will wait about 5-6 weeks (depending on dad's health / strength, I suppose), then do the surgery, which should put it somewhere in the second week of May.

Though I know dad is getting tired of this stuff, his spirits are up and this week he is really feeling quite good (the last chemo didn't hardly slow him down).  He's keeping his weight up (very important) and hope his appetite continues.  Gary's keep us fat and happy with steaks and au gratin potatoes. Best news of all....a cure is in sight.

Thank you all for your well wishes and good thoughts.

Will keep you all posted.

Appointment for visit in St Louis

On Tuesday, they took dad off the Lovinox (bloodthinner) injection he started on Friday; he will continue to take the Coumadin pill (which one of the doctors called "rat poison" - so I hope he isn't on this drug very long). He is on a very low dose. At first, his oncologist was recommending he stay on the injection for 6 months (!) but based on his blood test results, she decided that wasn't necessary.

Dad has one more chemo treatment Tuesday. Then the following Tuesday, he has an appointment with the oncologist at Barnes-Jewish in St Louis. This will be for a review of his case and possible referral to the surgeon there (Steven Strasberg) who has a terrific reputation and has the experience level you want for any surgery so complicated.

Gary will be staying here to watch over the house and dogs, while I drive mom and dad to St Louis, probably on Monday, then coming home on Wednesday, unless we have subsequent appointments in St Louis. (Possibly a followup appointment that same week with the surgeon?  Would be cool to get that initial consultation done in the same week.)

A slight scare and a whole day at the hospital

On Thursday, dad started noticing his left arm was swelling a little bit (I didn't hear about this until Friday morning - or we would have been off to the doctor then!). By Friday morning, it was pretty darn swollen!  We called the cancer clinic; they said go over to the hospital for an X-ray of dad's chemo port (perhaps an infection? he had no fever though, no other symptoms).

So off to the hospital we went; 2 hours waiting for the X-ray, then 2 more hours waiting for the cancer clinic on-call to respond (they had already closed at noon on Friday); chemo port looked fine. Another 2 hours waiting for the next test - ultrasound of dad's left arm - and then an hour or so to get another response from the cancer clinic again. We were getting kinda tired of that little radiology waiting room.

Diagnosis: Dad has a blood clot in his left arm, I guess not an uncommon occurence in cancer patients.  They recommended we go over to the ER and potentially have dad admitted to the hospital. In the ER (which was amazingly quiet! you'd never guess it was Friday night!), they reviewed again, decided to put dad on bloodthinners to clear up the clot, but he did not need to be admitted.

So after a quick tutorial for dad on how to take the injection (pretty much the same as their insulin injections), and a stop at the pharmacy, we returned home at 7 pm. That was a very long day and dad is pretty tired though very happy to be home - today is a resting day!

Dad now has to take this injection once a day, plus a coumadin pill. Once the coumadin has kicked in and his blood tests out correctly, he will not need the injection.  (And a doozie it is - the first 7 days was $350.  But now that he met his deductible, future doses will be a fraction of that.)  Hope he needs to be on this injection for only a short time.

We'll be calling the cancer clinic on Monday to make sure they can do his blood level test during his Tuesday appointment, otherwise we'll be at the hospital lab on Monday for the blood test.

Keep thinking good thoughts for dad!  Blood clots are scary, and so are blood thinners.

Awesome news!

Dad's CT scan results from last week, comparing with the scan done in October, show that the tumor has diminished considerably.  In fact, it has been reduced to 2/3 its original size, and would no longer create any effect (ie., at its current size, would not create any impact such as the blockage which originally caused the jaundice).

We are all very happy for such tremendous results from the 4 chemo treatments thus far (he had his 5th treatment today). The CT results will be reviewed by his oncologist and the specialist in St Louis; awaiting their recommendations. Since the chemo has been so effective, I expect more will follow, prior to any surgery.

Woo hoo!  Thank you all for your good thoughts and prayers!  We're hoping this continues to go in the right direction....

All is going well with dad's treatments

Dad had his 4th treatment last week, and we made sure he got lots of rest for a few days afterwards - so it didn't hit him like it did on the previous treatment. Followup bloodwork was good, and he also had a CT Scan yesterday to "re-stage" and send results to the oncologist in St Louis, at the Barnes Jewish cancer center. We are working on getting a referral to a well-reputed surgeon there, Steven Strasberg.

This week is also the deadline for medicare open enrollment and we still haven't decided on part D medicine coverage. Today we're meeting with the pharmacist for his recommendation.  Yikes, what an ordeal; it is a huge decision with enormous financial implications for seniors.  It is a complex and convoluted process.  I have spent many hours online pricing mom and dad's specific drugs - I can't imagine most seniors are doing this!

Plus, my understanding is that Part D (as it was modified about 5-6 years ago), is costing us much more than other government spending people are griping about (wars, bailouts, recovery act, ear marks) - Part D being a huge government handout to the pharmaceutical companies. Imagine you're a huge company like Walmart, or uh.....Medicare....with an incredible amount of negotiating power... normally you use your buying power to arrange better prices for your organization so you can provide better prices to your customers (ie., be more competitive, or in Walmart's case, make incredible profits).  Yet, our elected officials in their infinite wisdom, signed this deal with the drug companies agreeing that Medicare could NOT negotiate for better prices....ie., the drug companies can sell at whatever price they choose...  Would they have signed that deal if it were their credit, their name, their hard-earned money?

Hmmmm... I wonder if this has something to do with the healthcare meltdown we are seeing? Healthcare costs exploding exponentially? Drug commercials all day, every day? Drug companies showing HUGE profits in this terrible economy while most people are struggling? The cost of the silly little bailout is nothing compared to the billions we are handing to drug companies right now. The whole thing will eventually collapse, but I'm afraid it's gonna take us all down with it.

A good time in Branson

We spent 2 nights in Branson, enjoyed the drive-thru festival of lights, and a couple films at the Imax, which dad said is not nearly as impressive as the Omimax in St Louis, but we all enjoyed it nevertheless.
 

3rd treatment was Tuesday

Dad's 3rd treatment hit him a little harder than the others, about 2-3 days afterwards he was feeling really tired. He thinks it might have been that combined with a water pill he took for his ankle which has been swelling. They say drinking lots of water helps reduce symptoms by washing the chemo through your system - maybe the water pill conteracted his water intake???

He's feeling much better now, 4 days out.

Oh, huge THANK YOU to Lori (and grandpa's little helper Sami) who were out here for over a month and were a lot of help (we are all particularly grateful for the sloppy chicken meals - yummy!). Dad really misses Sami helping make the bed, not to mention.....put out the dogs, bring in the dogs, put out the dogs, bring in the dogs.....

Next week Thursday - Friday, we are going to Branson for 2 nights, since Dad said he wants to go - though if he is not feeling well, we can always cancel out.  We'll just drive around town and check out the lights, and relax in the 2-bedroom suite (timeshare we've stayed at before).

Dad has the normal follow-up bloodwork on Tuesday, so our biggest challenge is getting the dogs to the kennel!