Welcome to my blog about my mom, Loretta, and our journey through learning of her cancer and treatment.

Just a little background. Mom is 61 and hadn't been to a doctor in about 18 years until this past June 2011. The reason for this is due to the surmountable cost of insurance, even when your spouse has insurance it can be cost prohibitive.
So, Mom finally got approved by JPS in June and it was a good thing too, she had Basil cell carcinoma on the bridge of her nose. She underwent surgery to remove the tumor and plastic surgery reconstruction. She also has high blood pressure and Thyroid problems. We thought she was finally getting the attention she was missing and was going to be OK. Boy were we mistaken.
Mom started having some abdominal pain the first of January 2012. After talking with her and the pain getting worse, she finally agreed that she needed to go to the clinic or ER.
The following blog posts chronicle the events since then. Future posts will continue to explain treatment, issues concerning her condition and general comments.
I appreciate you taking the time to learn about what it means to be diagnosed and this type of cancer. Mom has been a trooper so far, she says "I'll beat this".

Monday, February 27, 2012

2/27/12 - UT San Antonio - Cancer Therapy & Research Center

6am - picked up Mom and we are on the road to San Antonio!!
It's a dreary, cloudy day, at least we won't have to fight the bright sun.
We made it to San Antonio at 11am and ate lunch at Denny's. Mom ate well, but doesn't feel well today. Her jaundice is back and she's a yellow smurf again.
At our appt now. They just took her vitals and blood samples for a CBC.
More to come as we meet with the dr's.

Update: so we met with 2 doctor's. They did a through hands on exam and completely reviewed her scans. There was a surgeon reviewing scans and he consulted with the doctors and confirmed that the tumor is inoperable. The reason for this is that the cancer probably started in the left bile duct and then traveled up to her liver (where the tumor is). It's completely covering the entire left lobe of her liver. To remove it they would have to cut the bike ducts (both of them) just below the junction of the 2 and then resect the left lobe. There wouldn't be any bike duct to reconnect to the right side. Ugh
So, the doctor did say that his course of treatment would be much the same as what St John's had proposed.
Mom is all yellow again from the bilirubin. UTSA dr said she needed to be admitted to resolve the issue with her bile ducts and the stents.
I got a copy of the blood labs they did and a picture of mom and I emailed it to Dr Isa's nurse, Michelle. Michelle called at 8am 2/28/12 and said she received the info and pic and that Dr Isa wants her in the ER when we get home. She also asked about the 2 opinions outcome and their treatment plan. I read her the chemo drug names and she said she will review these with the doctor and we will start treatment soon.
2/28/12 - we are on our way home! Left SA at 9 am.

New Friends

We were lucky to have someone put us up for the night in Tulsa. Ron & Nelda Cotes are good friends of Joanna's and they welcomed us with open arms into their home for the evening. We had a very nice dinner that Nelda prepared and some great visitation. Ron & Nelda are a one in a million!
We headed home Saturday morning.

Thursday, February 23, 2012

A Visit to the ER

2/23/12 - Thursday
Here we are, on the eve of leaving for Tulsa and Mom's doctor calls and says "your blood labs don't look too good, please go to the ER"
GEEZ, really??? So, we get here, they do more blood work and she is anemic. Normal level is 12-16 and Mom's a whopping 4.5!
That being said, observation here we come for a couple units of blood. Dr did say she can check out and still make it to Tulsa!! I'm excited that we may still be going, but only if she's ok.

2/24/12 - Friday
Mom was all done with her transfusion at 9am this morning and try released her. I got her appt changed to 2:30pm.
We made it to St John's at 2:45 and they held her appt for us. Phew!
Dr Cody Ho met with us, explained his course of treatment and wrote down his choice of chemo drugs for her treatment as well. His concern with her having treatment there was cost and that she would have 2 months of daily radiation and chemo and she isn't living locally. He gave us some resources to check out closer to home.

Wednesday, February 22, 2012

More Surprises

2/21/12 - Tuesday
I got all of our transportation and lodging taken care of for our trips to Tulsa on Friday and UTSA on Monday. We will be staying with a friend in Tulsa, Ron & Nelda were more than happy to let us stay with them. Our friend Sherry is going to let us use her new car to make both trips. Its a Kia Rio and gets about 30 mpg, a nice savings seeing as how gas is around $3.50 right now.
I texted my brother to let him know we got the appt with St John and our plans. He offered to help pay for some expenses. That was a nice thing too, because the visit cost for St Johns is anywhere from $50 to $300.
I told Gran and Mom about Michael's offer to help with expenses and they were both overjoyed to hear that news. None of us had even talked about the cost of these trips or what we would do for expenses. I just figured I would pay for it however I could. The cost wasn't an option of deterrent in my opinion.
My Uncle in Louisinana, Bill, sent me a FB message about a government and state program that offers a preexisting insurance plan and programs that support the payment of the premiums.
PCIP.GOV is where you sign up for the insurance plan and CHAP.TEXAS.GOV is the state agency in Texas that will help pay all or part of the premium. I filled out the online application for PCIP and all I need is a letter from her Dr to get it sent off.
Mom had her Dr's appt with her primary at 4pm. Dr said that mom needed some additional antibiotics and refilled her pain pills. Said that Mom should carefully watch her temperature and if it starts spiking again she needs to go to the ER. She said the new pain was to be expected.

2/22/12 - Wednesday
Mom's out running errands and off to another Dr's appt today, this time with the gastroenterologist for a follow up on her stent.
I came to work to find an new email from CTCA in my inbox.. Let's see what they said this time:

Hi Sondra, I was informed of the email that was sent to you on February 14th and I wanted to let you know that our nurse advisor reviewed your mother’s records and I would like to discuss it with you when you have a minute.  Please give me a call.  I look forward to speaking with you.

OK! Guess I'll call them when I'm at lunch today and see whats up..

Second Opinion Appt #2

2/20/12 - Monday
So I'm anxiously waiting for the phone to ring again today... Today is the day that Dr Ho at St John's in Tulsa is to review the additional medical records and decide if they can help Mom in her cancer treatment. It was about 2pm when the call came, it was Eddie and he said Dr Ho reviewed your Mom's files and we have an appointment available for tomorrow, can you make it... I wish we could have jumped in the car right then and headed for Tulsa, but I knew from talking to Mom earlier that morning that she has an appointment with her primary Dr on Tue at 4pm. So I told Eddie we needed to look at another day. We now have our 2nd appointment for a second opinion on Friday 2/24/12 at 12:45 in Tulsa at St John's!

New Pains and Fever

2/17 & 2/18/12 - Sat & Sunday 
Mom reports that she is experiencing a new pain & she's got an off and on fever. I told her to keep tabs on her fever and if her pain is above an 8 she needs to go to the ER. Now anyone that knows my Mom will know that she will have some rational explanation for not wanting to go to the ER, especially on a weekend.
Also, I checeked my email and saw that CTCA had sent me an email concerning my post on their FB wall. Here is what they said:
I apologize for the earlier exchange you had with one our representatives.  I completely understand your frustration and appreciate you taking the time to bring it to our attention via Facebook.  At Cancer Treatment Centers of America it is our goal to help everyone who calls and we failed to help you.  Help comes in many forms: treatment, physician referrals, or even service referrals.  However, in your case we didn’t learn enough about your mother’s condition or situation to determine how we are best able to help you.  If you are interested, I would like to continue the conversation you started with CTCA to learn more about your mother and determine the best way we can help.
 In response to their email, I sent them a nice reply and a link for them to download Mom's medical records. We will see what come's of it, if anything. Believe me when I say I'm not going to hold my breath....

Feb 13 - 17 Recooping, Overdoing & 2nd Opinion Struggles

2/13/12 - Monday
 Mom's first full day home from the hospital. Do you think she could just stay home and relax? Oh no! Not my mom... My uncle drove her to Walmart so that she could do some shopping. She tells me she was good, she drove the electric cart! LOL, Mom's...
I had to go back to the ENT this morning, seems my congestion is back and its in my chest. He gave me another round of antibiotics & said I should feel better by Friday. I felt so bad after my appointment that I took the afternoon off and went home to bed.

2/14/12 - Tuesday & Valentine's Day
Mom was tired when we spoke this morning, but she was looking forward to her and Dad going out to eat for Valentine's Day. She did spend the day at home till dinner.

2/14/12 - Second Opinion Search Part 1
I spent the morning scanning Mom's medical files and making some CD's of her scans. I faxed her pathology reports to St. John's in Tulsa. Michael made contact with them about a week ago and got me the info as to who I needed to send it to. It was helpful as it was one less thing I had to do. I went online to Cancer Treatment Centers of America to get some detailed info and saw that they had an online "contact us" section where you could ask questions. I'm an electronic person, meaning that anything I can do online, I will. So, I filled out the form, chose "cancer care" from the menu and left some breif notes as to why I was contacting them which included some info about Mom's condition and the need for a second opinion.

2/15/12 - Wednesday
Mom and Owen (Uncle) are back at it today.. They have been to Sam's & Walmart! GEEZ.. No wonder she's tired! She did say that they enjoyed their dinner out, they went to Golden Corral for VDay dinner. Mom is a big buffet lover.

2/15/12 - Second Opinion Search Part 2
Got to work this morning to find an email response from CTCA! Cool Beans, or so I thought..
Here is the part of the email that made me sad & mad:

I was so sorry to read about your mother.  I know this is a very difficult time for your family.  Unfortunately, our doctors are so busy helping patients who have come to our centers for treatment that they are unable to provide second opinions for others.  I am so sorry.  
I was in utter shock reading this.. I had to read it several times to believe what I was reading was true. I dwelled on this email and the total lack of professionalism and insensitivity all day long. I finally had enough of how it was making me feel, so I went to CTCA's Facebook page and wrote this on their wall:
Shame on you CTCA for telling me in an email that your doctors are "too busy" to give my mother a second opinion due to the other patients you're currently treating!
Really!!?? Guess you can stop paying for advertisements, you must be full to capacity!
 I felt a little better after posting that..
So if that wasn't enough of a let down, I decided to make a call to MD Anderson! WOW, I didn't expect to hear the news I got from them either. They won't see Mom without a referral! So I called Dr Isa's nurse, Michelle, and she got the referral process started, but said it may take awhile because of the red tape.
Ok, so it was back to business, again.. I called UT San Antonio's Cancer Therapy & Research Center to ask about getting a second opinion. Debbie was awesome, she was so nice and understanding. She needed some info and mom's records and said she could email me the forms to fill out and that I could email her mom's records for the dr's to review. Sure was nice to talk to a compassionate person. I got her email, filled out the forms, got mom to sign the medical release and emailed them back before 4:30pm! PHEW! Now the wait.. 
2/16/12 - Thursday Stress City
Mom brought Gran and I lunch today. We had a nice visit together. After eating, Mom says "I need to go home now, I'm really tired".  I knew she had been pushing herself too much this week.
I got back to work after lunch and my phone rings.. It's JPS social worker about Mom's referral to MDA. She says "I just got off the phone with MDA and they will not accept a referral until JPS has exhausted all of their treatment options". It felt like a kick in my gut. I mean, what does it take to get a freakin' second opinion? Shouldn't EVERYONE be accepted? Especially at one of the most sought after cancer treatment locations?
My day just went downhill from there. Jo and I texted some and discussed the reality that I may not get anyone that wants to give Mom a second opinion and that JPS would probably do all they could to treat her.  I had hopes that I could find at least ONE cancer center that could offer a specialized treatment plan to extend Mom's life for as long as we could without compromising her quality of life. I went home that evening with a very heavy heart and had a good cry on Kathy's shoulder. She asked if Mom and I had even discussed what Mom wanted out of treatment? Well NO!! We hadn't had that conversation. So, I texted Mom & asked how long she wanted to pursue getting a second opinion before calling off the hunt and letting JPS treat her. Her response was simple and to the point "Let's give it another week".
2/17/12 - Friday  The Phone Starts Ringing!
It's about 9 o'clock and for some reason I didn't silence my phone when I got to work, so when the phone rang it startled me. The number was Tulsa! The voice on the other end say's "Hi, my name is Eddie and I'm calling in response to the fax you sent concerning a second opinion for your Mom"... I was so excited I almost said "Thank you Jesus" out loud.. Eddie tells me that Dr Ho wanted some more info on the treatment plan that JPS had in mind and some additional records. So I got him to my download site so that he could get the records and gave him Dr Isa's nurse's direct phone number for the treatment plan info.  Dr Ho will review the additional info and they will get back with me on Monday to talk about an appointment! YIPPEE!! I have to believe that all of the praying has paid off!!
So, after coming off that high, I thought why not email Debbie at UTSA  and ask if she had heard anything.. It was worth a shot, and it paid off. Debbie responded quickly and said that they would be calling from the appointment office to set up a time shortly! I then sat on pins and needles for about an hour, which seemed like a lot longer.. Evelyn called around 3pm and just like that, we had our first appointment for a second opinion on 2/27/12 at 1pm at UTSA!
Mom was very excited to hear both pieces of good news.

Tuesday, February 21, 2012

Feb 8th - Feb 12 - Progress & Home

2/8/12 - Wednesday
Mom & I got a lot done today. I'm off work recovering from my sinus surgery, so what 
a better time to spend it with Mom in the hospital! I applied online for her Social Security Disability, that took the better of 2 hours. All the while, mom is in and out taking naps. 
They have her on heavy pain meds.
Mom felt well enough that she wanted to go out for a smoke around 1:30pm. While we were
downstairs, we contacted Dr Isa's nurse to try and get a visit from him so that Mom, Kent & myself could ask some questions and get all the facts, instead of bits and pieces. His office told us that he was working the hospital this week and that he should be on the floor this afternoon. When we got back upstairs, Dr Isa was at the nurses station and said he could meet with us around 3-3:30.. What a deal! Mom called Kent and work and asked him to get to the hospital quick!
Dad, Mom & I met with Dr Isa. Dad had no idea just how serious mom's condition really is. Probably due to mom shielding him from it like she does with everything else. She would rather deal with it and then let him in on what's up.
Dr explained that because of the location of the tumor and size, it's inoperable. Because its a rare cancer, they have no proven protocol of chemo to treat it effectively. We asked Dr for all info needed to get 2nd opinion. It was 4pm when the Dr called the floor nurse in the room to help with the paperwork. Sylvia was able to call radiology and get a CD of moms scans and she made copies of all of mom's tests and reports. By 4:45 I had everything!! It was amazing.
Mom was nauseous all day, prob due to having Taco Bueno the night before. She didn't have any breakfast or lunch. She was better by dinner.
I bought her some new pj's and Kathy put elastic around the hem so they wouldn't ride up when she was in bed.
I went to get meds for Gran & Kathy at WM and then went to Gran's to explain everything to her. She took the news pretty well, considering.

2/9/12 - Thursday
Got copies of medical records and prints made for mom to sign for SS application.
Mom took a shower and donned her new PJ's. She was feeling really good today. Dr's came in around 4pm to ask if she wanted to start chemo. (really!!??) then at 8pm they ordered 2 pints of blood to give her more energy. (really!!??)

2/10/12 - Friday
She got her 2 pints of blood and a chaser of Benadryl for good measure. O2 sats are at 96 off oxygen!
I went to SS office to give them the medical records, it was the last step in the process. 
It was pretty amazing, I was in and out in less than 15 min. I couldn't believe it. They said we should know something in a few days.
Mom called and the Doc says its possible she could go home Sunday. I didn't feel well that afternoon so I stayed home.

2/12/12 - Sunday
Mom came home today! 17 days in the hospital, but she's finally home. Very little pain, but she's tired.

Jan 30th - Feb 7th - Pain & Drain's

1/30/12 - Sunday
Michael (my brother) and family visited around 3pm as Kathy & I were leaving. Mom was waiting to hear if they were going to do her surgery the next day.

1/31/12 - Monday
9am - I was there when mom went into surgery to have a drain put in the bile duct on the left side of her liver. Dr said they will install the stent in a few days after the drain has removed as much bile as possible.
Mom came back to her room in a lot of pain around the drain exit site on her right side. 
8pm - oncologist stopped by, Dr Norikanda, to check on mom. She explained that they have now classified mom's cancer as Cholangiocarcinoma. At this time it does not appear to have metastasized.

2/3/12 - Friday
1pm - they installed her portacath and on her right side. She has fever again since coming back from surgery.Doc wants her on 10 consecutive days of antibiotics starting from 1/30/12 before they will consider her going home.

2/7/12 - Tuesday
My morning started at 6:30 when I had to get ready for my day surgery on my sinus'. Surgery was at 8:30am and Joanna had me back at home around 11am. I called mom on the way home and she said they have her schedule for surgery around noon. I rested until mom called and said she was on her way downstairs to surgery. Joanna and I got back in the car and made it to the hospital before mom went into surgery at 1pm.
They removed the drain tube and inserted a stent in her left bile duct. The Dr said he had a time getting it in there because of the tumor. They used the portacath for both blood and IV with success.  Joanna and I waited in mom's room for her to get out of surgery. She was in some pretty bad pain.  Jo was a trooper running me around and hanging with me at the hospital with mom. Thanks Jo!

Monday, February 20, 2012

January 26th & 27th - Going to the Hospital

1/26/12 - Thursday 
Dr Isa calls Mom and says he wants to direct admit to the hospital at 5pm. 
Mom and Dad go to the hospital around 4:30 and gets her checked in.
They put mom on NPO after 12 midnight because of the tests that they have
1/27/12 - Friday
Test day! 
1am - lower GI
1pm - pelvic sonogram
2pm upper GI endoscope 
5pm abdominal MRI
At 6:30, Mom is finally eating... Boy, is she ever happy, even if it is 
fish. LOL

January 25th

1/25/12 - Wednesday 
Oncologist appointment - Dr. Muhammad Isa
Dr. Isa was very nice, but also concerned when he examined mom. 
In less than 24 hours, she went totally jaundice. She literally 
looked like a yellow smurf. He explained that if he had to put 
a time limit on what he thought she would have, he said that 
left untreated she had 3-6 months. The doctor wanted to do blood 
labs to check her liver function. If her liver function has 
decreased significantly she will be hospitalized. He said that
he would be calling her once he got the blood test results.
Mom had a chest CT and bloodwork before we left. 

Jan 6th through Jan 19 - The Beginning

1/6 - Friday
Mom goes to ER with abdominal pain. They do a CT scan and tell her there 
is a spot on her liver and they want to schedule a Biopsy. They schedule 
the biopsy for the following Tuesday 1/11/12.
1/11/12 - Tuesday
Mom & I go to JPS for the biopsy of her liver. She has a hard time awaking
from the anesthesia and a lot of pain. It takes us 4 hours from when we got 
there till we left. Biopsy staff tells her that she needs to get an 
appointment with Oncology. They try calling while she's there, but you
leave a message and they call you back.
1/13/12 - Thursday 
Mom has appt with Neurologist, previously scheduled to check up on her 
Myasthenia Gravis, which has been in remission for 20 years. Neurologist 
pulls her ER info from the previous week and mom learns that when the 
ER told her it was a "spot" it was really a tumor. Mom tells the 
Neurologist that she doesn't like her medical issues to be sugar coated, 
to just give it to her straight up. Mom tells the neurologist 
that she's been trying to contact oncology and has left messages but 
hasn't gotten a call back. The Neurologist faxes a referral to Oncology & 
her an appointment with a liver specialist for 1/19. The neurologist tells 
her that her biopsy results should be ready on Monday and that her primary 
doctor will tell her the results.
1/16/12 -  Monday
Mom has an appointment with her regular physician that morning. Her dr is 
shocked when mom tells her whats been going on since their last visit. 
Her doctor had to check mom's record twice but finally receives her biopsy
results. Test results classify her cancer and Adenocarcinoma. While mom 
is waiting her turn for blood lab appointment the Neurologist calls to 
make sure that she got her results. 
1/18/12 - Wednesday 
Oncology calls to say they've received the paperwork from the Neurologist. 
Mom tells them of the biopsy results. They put her at top of list for appt. 
1/19/12 - Thursday 
Mom & I go to the liver specialist appointment. Dr says he won't be too 
involved because this is not true liver cancer. He Does share with us the 
actual pathology report that explains that the size of the tumor is large, 
it's 2"x2.5"x3"
Oncology calls when we are leaving the liver specialists office to set appt 
for 1/25 at 1:30.