Progress!!

It has been a crazy two days: appointments with all 3 doctors, 2 sets of lab work, 2 radiation treatments, and 1 MRI. But we also have a bit of good news.  The MRI shows that the tumor is no bigger.  Its edges are less defined and it isn't as "bright" as in previous MRIs.  Bottom line, they are seeing improvement, but it still has a way to go.

Tomorrow will be day 20 of radiation and 30 of chemotherapy.  Chip's symptoms are steadily getting worse, but that is to be expected.  It's a "darkest before the dawn" type of deal. Still no headaches or nausea, but he is feeling weaker, and is loosing some muscle mass (and weight!)  His skin is very thin, and he is starting to loose hair.  He told all of his doctors that he "got the mange" so I shaved his head.  He also has some numbness on his left side.  All his doctors agree that it is a side affect of the radiation, and probably will improve when it is over.

Again, our family is blessed by your love and support.  During the Holidays, little "miracles" of food, treats, or cash were arriving almost daily.  It is a great blessing to have the support of all our friends and family.  Keep us in your prayers.  We know they are working! God Bless You all.

This is a very old picture, but it fits the spirit of the post.

Treatment - Chemo Day 12, Radiation Day 8

Not a lot to report. We are one week in. Nausea med at 9:00, Temodar pill at 10:00, and radiation at 11:00. It is affecting Chip as expected. He hasn't had much nausea since the first day. He was having a bit of a headache for a few days also. These were both taken care of by raising his steroid dose. Now his big treatment symptom is fatigue. It is taken care of by a nice afternoon nap. Raising his steroid, however, did raise his blood sugar levels again. Doctor number 4 - Dr. Crow, has doubled his Metformin. Still don't see much change, but we call him again on Thursday. Josh had his tonsils taken out on Saturday, so there are two patients this week. Thanks again for all the prayers and well wishes. They are appreciated.

Treatment - Day 1 (WooHoo)

Before we start talking about today's first day of treatment, here's what happened yesterday.  I have been concerned that Chip is having issues with his blood sugar.  I WAS RIGHT.  We went to his GP yesterday and found out that the steroids that are keeping his brain from swelling is messing with his blood sugar.  So - we are testing his glucose levels first thing in the morning and he is on diabetes medication.  One pill to take care of the effects of another pill.  This will be a theme running throughout this blog today.

OK.  So the stars have aligned, allowing us to begin treatment today.  It has taken awhile to negotiate getting the very special and expensive chemotherapy drug, Temodar, here to Lubbock.  The great thing was that Chip and I didn't actually have to do anything,  Jan, our fabulous social worker, took care of everything.  She called me at work.....

Jan: "Mrs. Bacon, I need to ask you something."

Me: "OK"

Jan: "Your insurance has improved and sent the Temodar - it will be here tomorrow - but your insurance wants pre-approval for the Zophran (nausea medicine) before they will send it."

Me: "Oh, no.  How much longer will that be."

Jan: "Well, it takes the nurses awhile to get that done - it's a pain - do you mind if WE pay for that and send it in to Best Pharmacy? You can pick it up today."

Me: "Sure...sounds good."

It really is a fabulous set up.  Remind me to tell you about the goodie bag we got today.

ON TO TODAY.

Here's the schedule.

6:00 am - glucose test, morning meds (9 of them)
7:00 am - breakfast
9:00 am - Zophran (nausea medicine)
10:00 am - Temodar (Cancer Killer!!)
11:00 am - Radiation Therapy at the cancer center.

We are told that the Temodar is a fast uptake drug when taken on an empty stomach.  So we eat at 7.  It takes about an hour for the drug to be in the brain, killing cells.  They want the radiation to be working on those cells  AT THE SAME TIME.  Pretty cool.

So we followed the schedule - everything went great.  Had more discussions about side-effects. We'll let you know if he experiences any.

Here are pictures of the radiation machine, his mask, and his cute and sweet radiation tech.

At the Oncolosists (Plural)

Today was our first visit with the oncologists, Dr. Anderson and Dr. Close at the Joe Arrington Cancer Research and Treatment Center here in Lubbock.  The plan for Howard's treatment is as follows.

1. Tumor biopsy and removal of some of the mass. (Completed)
2. Radiation/Chemotherapy Combo
3. Long term Chemotherapy Regimen

Ok. So we are on part 2.  Howard will have 30 days of radiation treatments - 5 days a week.  The radiation process is called IMRT.  It is very targeted, it takes 15 minutes each day, and has no side effects.  Running concurrently with the radiation is 42 days of chemotherapy - 7 days a week.  The drug is called Temodar.  It is an oral medication that is the latest and greatest for this type of tumor.  With it he will take an anti-nausea drug, although the side effects from this medication are usually milder than what usually runs with chemotherapy.  He will also take Bactrim (an antibiotic) three times a week.  The Temodar will compromise his immune system some, and so they want to prevent any pneumonias.

After 6 weeks, he will be on a long-term treatment plan.  He will still take the Temodar, but for 5 days with a break of 25 days between cycles.  This will go on for at least 2 years.  During that time, he will have MRIs every 3 months, and his "tumor board" will meet after each to discuss his progress. 

Today, Thursday Dec. 1, we will go in for his "Radiation Simulation". He will be fitted with a face shield that will hold him down to the treatment table.  Howard is calling it his "Hannibal Lecter mask."  They will inject him with contrast again and run him through a CT.  This is where they are doing all the calculations and targeting for the treatments.  It will take the longest today, after that it will be a "strap in and go" type of thing every day.

I need to add something about the fabulous treatment here at the JACC.  Talk about wonderful people.  This is how everyone should be treated at the doctor's office.  It seemed like everyone's primary job was to answer our questions and take care of us.  We have a special social worker, Jan, who is taking care of all the insurance work for us - "jumping through the hoops" so we can get the Temodar here as fast as possible.  I have direct to the desk extension numbers for about 8 nurses to answer questions any time I need them.  Dr. Close gave Howard a hug before he left....really super.

So..that's the plan.  Let you know what happens in 6 weeks. :)

We are Home

OK.  Blogger stopped working on my iPad, so I haven't been able to update in the last few days.  Here's the highlights in reverse order.

We are home!! We were released Thursday night.  He will be using a walker till he his no longer dizzy.  He is on steroids, seizure medicine, and pepsid to keep both the others from upsetting his stomach.  We are sleeping in our own bed, and Molly and Lily are no longer lonely.

Thursday before we left, we spoke again to the neurosurgeon, Dr. Felton.  He let us know that the "after" MRI showed that he removed about half of the tumor during the biopsy.  He says the loss of peripheral vision in his left eye might get better as the swelling goes down. Again, removing the tumor surgically is impossible.  He described it as being like "sweeping up sand" - you can never get every last grain.  And any grains that remain grow into tumors again.  But the tumor can be poisoned!.

Which brings us to Wednesday night and our first meeting with our medical oncologist, Dr. Paul Anderson.  He was wonderful - nice, funny, and very upbeat.  He and Chip got along very well.  He said he would be giving him a treatment that is 2-3 years old, the drug trials were held here in Lubbock, and it had a very good "cure rate." (WOW - that makes us hopeful!) It is in pill form, and has very few of the side effects associated with chemotherapy.  We cannot begin any chemo treatments for 2-3 weeks, until his brain heals from the biopsy surgery.  We will eventually hear from Dr. Shalaby, who is the radio-oncologist, to discuss radiation therapy.

Again we are very grateful for the outpouring of love and support.  It has been amazing to me to see everyone from SPS come and visit Chip.  What a wonderful work family!  He was exceptionally excited and happy to see everyone.  Please continue to call and visit.  It's really good for him.

One last note.  The tumor and surgery is affecting Chip is some very interesting ways.  He is much more emotional - prone to tears and eager to tell everyone of his love for them.  He is also very VERY talkative.  He has not watched a second of TV - he moves from me to Mom to Dad, talking and telling stories.  And of course, his thoughts are turned to God.  He is grateful for everyday with his family.

Waiting on Doctors

We are still in SICU and Howard (henceforth known as Chip) is finally resting. His head still hurts a lot. We are waiting on his neurosurgeon to release him into a regular room. We are waiting for an oncologist to introduce himself even. We know nothing new.

After the Biopsy

I am posting on this blog to update everyone on Howard's status. It is really a busy time. This is the fastest way to communicate. I hope you all understand. Please comment below.

Howard had a biopsy on the tumor in his right frontal lobe. Dr. Felton opened his skull and (in Howard's own words) "proved there was a brain there after all." It is cancerous. They took out a big piece, but due to its size, type, and location, it will not be able to be removed totally.

We are in SICU tonight. He has a bad headache - they broke his skull and all - but he is receiving good drugs and is feeling better by the hour. Hopefully we will be in a regular room tomorrow. Hopefully we will see an oncologist tomorrow. We're ready to hear the next step.

Thank you for your love, prayers and support. Please share this blog with others as appropriate.

Love, Howard and Vicki