10-13-2012 Mom's 62 bday

Happy birthday to the greatest person in the world, my Mom, Loretta.
Mom would have been 62 today. I miss her each and every day. It's been really hard lately, due to Mom's bday.
I spent the day in the country, taking in all it's beauty and marveling at Gods handy work.
I've been blessed to have many people to lean on these past months. I know that they care for me and care about my well being as well.

MISSING MOM

October 1st will be 4 months since mom's passing, and the 13th of October would have been her 62nd birthday.
Words cannot even come close to how much I miss my mom, nor can they comfort me.  I think of her each day and wonder if I did everything I could to get her the treatment she so desired.
Mom was more than just my mother. She was always my best friend. Someone I could talk to about absolutely anything. In some ways mom was like the sister I never had. She never told me no and never told me I couldn't. She is the very framework that has made me what I am today. I've had some really strong women in my life that always supported me. Its no wonder that my mom was the way she was. My great grandmother, Alma, was the strongest of them all. We were as close as soul mates as anyone. A strong woman who didnt take shit from anyone, not even the men in her life that took her for granted. My grandmother, Dearlene, that would always listen to what I said and then gave me the ugly truth about everything I needed or didnt need to know. Gran and I are closer now than ever. Its only now, that I've lost 2 of the strongest women in my life that I'm now able to understand why my grandmother is bitter, cautious and most of all loves without judging. Mom was the best of the two of them and I hope that, somehow I can be even better.
I went to bed tonight and couldnt go right off to sleep. My thoughts were with my mother in her last days and I laid there crying. I"m an emotional mess. I know that times heals, or so they say. But I cant imagine ever not missing her or wishing I could have done something more to allow her to still be here. In a lot of ways I feel a strong sense of guilt. I know mom would tell me if she could, that I did everything right. That it was in no way my fault, that cancer sucks and that sometimes, even the good people have to go. I get angry, mad, ragefull and then very sad.
I know that people lose loved ones and they say they understand. I firmly believe that unless you knew the relationship between two people, by living it yourself, you cant come close to understanding how I feel.  It took me a long while to get around to these feelings and to start letting them out too. I now know why people pay to talk to someone about their feelings. Maybe I need to talk to someone too. Its just been my experience with it that makes me cringe at the thought of sitting with a total stranger and pouring out my heart and soul just to tell me its a natural thing to do (missing mom).
Mom would have loved having seen me give her another grandchild, I skipped that part of my life. Too late now to rectify it too.
So... What am I left to do? The women in my life have been caregivers, and so, as the others did, here I am caring for my grandmother. She's nearing the end too and it will just be another big hole in my life when shes gone too.

Recently I was in Port Aransas, TX with my partner, Kathy. One of mom's favorite places on the Texas coast. I carry mom's ashes with me in a keepsake vial everywhere I go. I made a small tribute to mom in the sand by carving MOM (with a heart as the "O") wrote the place and date below it and buried some of mom's ashes in the center of the heart. It was just outside the tidal limits. I also let some of her ashes go in the surf. I wanted to stay there until the tide came and washed away what I wrote and it came close a couple of times. But deep inside, I knew I couldn't watch it go, just like it was so hard to let her go on June 1st.

So, here I sit at 1:40am pouring out my thoughts in this blog, still weeping and wishing she would call me. Rambling along like I had good sense, hoping to share some of my pain.
The coming of her birthday is a mere 14 days away and I know that as each day approaches it will be harder and harder for me and others close to mom. God be with us all, as we will all need the strength to make it.

Loretta's Celebration

6/9/2012 - Saturday @ 2pm

What a blessed day. We had Mom's Celebration today. Rev. Carol West led us in a tribute prayer and then we released balloon's. We watched as they climbed higher and higher until they could no longer be seen.
Many attended this joyous day in memory of a woman who gave all, to everyone.
I honored Mom early this week with some new ink. She saw the design and loved it.
Thanks to all of you who made this a joyous tribute to Loretta's everlasting memory.

Mom came home today

6/6/2012 - Wednesday

Mom's remains were brought home today. I'm glad that she is finally here with me.
There has been such an outpouring of love and support from everyone. It's been hard this past few days, but each day gets a little easier to deal with.
Saturday 6/9/2012 will be her Memorial party, or Celebration of Life.

Loretta Belcher 1950-2012

June 1, 2012 @ 6:30

Mom passed away this morning. I prayed so hard Thursday night that God would end her suffering and let her know that we would all be ok.
He answered my prayer. Even though it was hard knowing she was gone and watching them take her away. But I know in my heart she is in a better place and no longer in pain.
I miss her so much.

The end is near

5/30/12 - Thursday

I called hospice on Tuesday to have them evaluate mom. They started 24/7 care that day.
Wednesday came and mom is non-responsive when you try and wake her. She's comfortable and not in pain. Her sister-in-law, Pam came to see her as well as her cousins Janice, Brenda, Wanda and Patsy. Carol West, our pastor came and prayed for mom and told her it was ok to go, that God has her now.
Thursday around 9:40 Owen calls to tell me that the Dr can't read her BP. Shes got very labored breathing and a rapid pulse. It won't be much longer now. I called Kent and told him to come home and be with her. I've notified everyone else that it won't be long. Kathy came home from work to see mom & be with me. She stated for awhile and I asked her to go be with Gran. So she's over at Gran's.
Today is mom's only grandson's graduation from high school. I know if she could have gone she would have. I probably won't be going so that I can be here with mom.
I pray that our good Lord eases her body and takes her home to be with our loved ones that have already passed. I know that my great grandmother is waiting with open arms to comfort her.

Baton Rouge update.

5/27/12 - Sunday

Mom awoke several times in a little bit of pain. All of which is solved by a little morphine.
She's still sleeping a lot and gets irritated with you when you wake her to help her with pain or something.
Please God, let her make it home tomorrow.

Baton Rouge

5/26/12 - Saturday

Mom said she had to make it to Baton Rouge for the tournament (USBC Open bowling tournament). She's here, but deteriorating. She won't make it tothe lanes to watch Kent bowl, nor will she make it to a casino to play the slots. She's been sleeping 20+ hours a day. If she could just stay awake for a couple of hours she could enjoy a few things, but she can't even stay awake to potty. Kent & I are taking turns watching over her as she rests.
I pray that she doesn't linger like this for long, it's just not the quality of life she would have wanted for herself.
My heart aches each and every day. All I can do is be there for her now and tell her I love her each chance I get.

Long.. Stressful week

5/15-5/20 Mon-Sat

Mom and I got the news from the oncologist on Monday that she can no longer have aggressive treatment. Her cancer has progressed and for her to have treatment would make her so sick she would die from it. Mom didn't take news very well, as I didn't either.
Monday started at 9am and I got home at 9pm. Long day and mom & I broke the news to Kent & Owen (her brother).
I spent too much time in the house with them smoking.
Tuesday morning came and mom was aggressively perusing calling hospice care. I told her that I would call and that I could answer all their questions.
She finally relented and I called them at 9:30am. We have an appt for 6pm Wednesday. Mom was actively telling Owen what to move from her room to make way for the hospital equipment
I awoke Tuesday morning coughing my lungs up. Didn't even make it all say at work I felt so bad.
Wednesday I went to the Dr and got all medicated up. I have an upper resp/sinus infection. Didn't go to work. I went and got my anti-biotics and headed to grans for lunch and a nap.
Gran was very happy to see me. Since mom was in the hospital I hadn't been over for lunch in awhile. We at and visited for a few and then I laid down for a nap. I no more got to sleep and hospice called wanting to change our 6pm appt to a 2pm appt. Boy, am I glad we did. Marla with Vitas Hospice was so nice. She got there at 2pm and left at 8pm. It's a long process to get everything signed, verified and checked in. Mom got really tired through the process.
Thursday mid day they delivered mom's medical equipment, including a nice bed with rails. Mom was finally starting to calm down. Although she had a panic attack at 2am Friday morning and called Hospice.
I was sick again Friday, felt like my lungs were being ripped from my chest. I rested until 2pm and then called mom to check on her again. She said she was feeling much better and needed to go to Walmart for some clothes that fit and some other items.
We decided on Thursday that she needed to have her baptism (she was baptized when she was 14, but wanted to do it again) on Sunday 5/21. I got it all arraigned with my pastor, Carol at Celebration. Mom & I went shopping and I was the one about to fall over by the time we got home. Mom got some new cotton pants that are more comfortable win some matching shirts.
Saturday came and mom had another good day.
Sunday was a blessed day for mom She was baptized and no a part of our church family at Celebration.
My brother and his family, 2 cousins, her brother & his daughter and many, many friends were there to share in moms big day. We all gathered at our house afterwards to visit and eat. Mom overextended her stay and got really tired. Owen and Brianna took her home and got her in bed. She slept all night.

Finally out of the hospital

5/14/12 - Monday

Yeah!!!! Mom got out of the hospital yesterday!
She was scared of coming home, but we talked it through and she was finally ready to leave.
Her pain meds leave her forgetful and very confused at times.
I'm so pleased she's home. We had to make a decision Saturday as to whether she wanted to continue treatment or call Hospice.
After explaining it to her again, she realized that if she chose Hospice, there would be no more treatment and they would just make her comfortable until the end.
Wow, you should have seen the clarity in her face once she realized what I was saying! She said, "let's do this, let's get treatment"!
Mom's a tough cookie and she proved that Saturday. She decided it was time to start moving, so Kathy and I got her up and walking down the hall and back. She did real well for someone that's been in bed for 2 weeks. After exercising, mom and I went into the bathroom and she got a good shower. She enjoyed it so much she was purring like a kitten.
I thought we had her all tuckered out, but I'm guessing after we left she took a short nap and then started calling everyone. LMAO

So here we are on Monday. Mom said she slept really well and didn't have any pain in the evening.
I did all of her pills for the week and she was really confused then. I'll have to keep on top of her taking those for awhile to make sure she doesn't forget or try and add/delete pills.
We are waiting on home health to come teach me to give her IV antibiotics. Sorry, got interrupted on my post by the home health lady, Carrie. 2 hour visit, you know the one, give me your mom's life history. Ugh
All of this background so that she can show me how to deliver mom's IV antibiotics.
So we has to rush to see Dr Lingham. We are here now, waiting for her to see us in the exam room.
Next stop is JPS IR department to check on mom's drains.

Day 11 in the hospital

5/11/12 - Friday

Wednesday mom starting feeling better and Thursday he was even better.
The transitioned her from IV pain meds to oral and things were going well for her. They even started making provisions for her discharge.
Until Mom called me at 4:50am to tell me she's in pain and that what they have given her isn't working. She also told me she didn't think she would make it through the day.
She's scared. I'm thinking she's scared she will get home and there won't be anyone there come Monday when kent goes to work.
I spoke with the doctor and asked that we get a new CT scan so that we can determine the extent of her tumor and if it has metastasized. So, we are currently waiting on that.
She also doesn't want the NG feeding tube. It's hard for her to swallow and it's hurting. Dr tried to get her a PEG feeding port installed in her stomach, but with the fluid on her abdomen they can't do it. It would leak.
We've also been trying to get her a surgery for a pain block. JPS transitioned to their new electronic patient charting system and it had severely effected major areas like Surgery, admissions and the ER. surgery cancelled all non life threatening surgeries all week.

I've spoke to a social worker and they are contacted Hospice care. We are waiting to hear back from them.

Please pray for Mom, she's been praying hard.

Day 8 in the hospital

5/8/12 - Tuesday

Mom had her surgery to relieve some of the fluid in her abdomen yesterday.
They removed 1 liter from one site on her lower right abdomen.
She was scheduled for a pain block surgery today, however, the hospital implemented their new computer system this past weekend. This new system has come with a lot of issues they didn't expect. A lot of the key departments can't operate because of it. Surgery is backed up by 2-3 days.
So, they have pushed her surgery to this Thursday.
She was feeling much better earlier this morning. She was alert, talkative and wanting juice and water. He even wanted to be adjusted in bed to get more comfortable.
But, Murphy had to hose the progress she was making. Mom is now back in pain.
Wound care was here to apply a gel like patch on her lower back and pelvic area to prevent a bed sore.
I wish there was more that I could do to ease her pain or even take it from her. I pray many times a day that our gracious and loving Lord with heal her and comfort her pain.

Day 7 in the hospital

5/7/12 - Monday

Here we are, day 7. Mom is still in a lot of pain. They will be taking her to surgery before 2pm today to drain the fluid on her abdomen. We hope this will help ease the pain.
Tomorrow they are going to do a pain block. They will sever the nerves that serve her liver. This will help prevent this from happening as her condition worsens.
We will probably do a feeding tube unless she feels that She can drink and eat on her own.
I pray that after tomorrow she will be out of this severe pain and able to gain some strength and go home.
Please Jesus, perform a miracle and heal my mother. She has so much to offer. Amen

Day 5 in hospital

5/5/12 - Saturday

Mom is still in extreme pain. Her fluid build up in her abdomen, called Ascites, is not helping her pain. They came and did a sonogram to give the dr an idea of here the bulk of he fluid is so that they could possibly drain it and give her some relief. Once they reviewed the scans, they determined that her fluid is in layers and it's too difficult to drain it outside the OR. They will drain the fluid on Monday in the IR department.
We also discussed her pain levels a few days ago and that pain management may have some options to relieve her pain. If all goes well, Tuesday they will do a pain block in her spine. They will literally sever the nerves that supply the abdomen area of the liver. It's possible they could regenerate, but it would take months to do so.
Mom has also vomited some brownish-red fluid. It could either be an ulcer or the tumor has infiltrated her digestive track.
It's so hard to watch her deteriorate like she is. Last week at the dr she weighed 115, today, being weighed in the bed, she is 132! She hasn't Ben 132 since January.
She's scared and worried and doesn't want to be alone.
Feeling helpless isn't all that I feel, but I can't let mom see any of that in my face or my voice. She need to know I'm her rock and that I'll be here for her.

Abscess update

5/3/12 - Thursday

Mom got moved up to the Oncology floor at 5:30am this morning. She called to let me know. I guess in case I was coming up to see her really early. Lol
I brought her a really nice bouquet of flowers. She loves them.
She's still experiencing break-through pain as well as being sore from being in bed so much.
Both drains are working very well. Her abscess is still draining some nasty looking stuff.
Even though she sleeps a lot, I know she's not getting good rest. I feel so helpless at times. I know that for her, me just being here is comforting.
Dr Rana and a few interns came in to check on mom. Her abdomen isn't as hard as it was yesterday, so he feels that it's trying to resolve the fluids on its own. Dr Fitzsimmons will be checking on her later today as well. He has done her bile drains and he did the abscess drain yesterday.
I wish Kent could be here with her. He bowls on Wed and Thur each week and the series is almost over. I know mom would like it of he were here.

Surgery today

5/2/12 - Wednesday

Mom has a baseball sized abscess near her hepatic arteries. Also, her liver isn't processing her body's ammonia and she's got a lot of fluid in her abdomen. Doctor is pretty sure if they drain the fluid it will just come back.
We have been waiting all day for them to take her to surgery to drain the abscess. At that time they will access if they should drain her abdomen as well.
Mom is in extreme pain.

Ok, they finally got her to take her to surgery. I'm waiting in the surgical recovery area for her return.
Doctor said this infection is probably due to the numerous drains they've had to replace. he wants to drain just the abscess and see if that resolves the abdominal fluid.

Happy Monday

4/30/12 - Monday

I called JPS IR Department this morning and got mom worked into their schedule at 11am this morning to get mom's drain replaced.
Got mom ready in record time and out the door so that we could get checked in and the paperwork could get through the proper channels, especially since this wasn't planned for more than 24hrs.
Mom was happy to know that they could get her worked in today.

Bad Weekend

4/29/12 Sunday

I went back to mom's around 10pm last night to check her bandage and her drain progress. Well, I had hoped for better results than what I found. Mom said it drained really good for about 2 hours after Kathy left her and then it stopped.
I tried back flushing it and was able to devise a method of free flowing the bile into a bucket. This method was working very well. In a matter of minutes there was an inch in the bucket. I asked Kent to check on it and close the bags drain when he went to bed.
6am Sunday morning mom awoke to a full bag! But her pain was none the better, in fact, it was worse.
I went over at 8:30 to check her bandage and it was still holding and not leaking. Mom hasn't eaten solid food since Friday night, so I made her a protein shake. She said the first 2 sips were ok but then it tasted like cardboard. This is generally a yummy shake! Protein powder, Herbalife meal replacement powder (chocolate), pineapple, strawberries and almond milk. She didn't want anymore after that. I feel so bad for her. She said she was going to try sticking it out till tomorrow.
It's 3:30 now and no news from mom since this morning. I'll check in with her again around 6 when she has her next round of pain pills. Hopefully she'll be feeling some better.

Clogged Bile Drain

4/28/12 - Saturday

Well, as luck would have it, mom was doing pretty good this week until today when her drain clogged up.
She called me this morning in extreme pain and asked me to come over. I got there and she wanted me to back flush her drain and change her dressing. I thought I solved the problem because after I back flushed it, it was draining very well. I got the dressing changed and mom all comfy in bed. Her pain had eased up, due to the release of the backed up bile.
Mom awoke from a 6 hr sleep to a soggy bed. Her drain was clogged again and the bile was leaking externally of the drain, all over her and the bed. Kathy went to CVS and got her some waterproof bandages in hopes that it will help contain the bile a little better. She also got her some chubs to keep the bed from getting wet.
Come Monday morning, I'll call and get her scheduled for her drain replacement. I also need to talk to the Dr about making this a weekly standing appt.
Mom looks so bad. She's down to 115 and you can see all of her bones. Except in her left lower leg, where she's so swollen that her foot looks like it belongs to a 300lb person.
Her primary doctor did a sonogram and ruled out a blood clot. She also said there wasn't much they could do for the swelling. For her to keep her feet elevated.
Please keep mom in your prayers.
Thanks.

Leaking Bile!

4-19-12 Thursday

Mom called last night and needed a ride home. She went to the bowling alley with dad to see her friends and started feeling very nauseous.
I changed her dressing on the bile drain bag and mom tells me it's been leaking lately.
7am this morning she calls and says she wants to go to ER for them to fix the drain. We got here at 8:45 am and we are just now in IR where they do the procedures. Doctor thinks it may be clogged due to the tumor.
They will be doing a check on the drain and probably replacing it.
As I thought, they replaced the drain with the largest one they have. Doctor said that it was all clogged up, probably due to the tumor and that this will keep happening. He then gave me the direct number to the IR department so that we don't have to go through the ER for this type of a thing.
It seems that every time we do something we get one more piece of the puzzle to allow us to get where we need to be faster.
Mom was released from the ER around 4:15. She's safe at home now feeling much better.

Radiation Simulation

4-16-12 Monday
Mom has two appt's today.
We started at the cancer center at 8am with blood labs, initial consultation with radiology tech and then mom had to drink 2 bottles of barium. It's now 11:54 and they finally have her in the CT machine getting it all mapped out and documented. It will now be about 2 weeks till she starts treatments.
Mom's next appt is with her primary doctor at 2:30p.

New Stent

4/13/12 Friday

We signed in at the registration desk at 7am this morning for Mom's stent replacement or new stent. We really don't know what the plan will be until the Dr gets in there. Mom's hopeful that they will remove her bile drain bag as well.

Update:
Mom was in surgery an hour and then the Dr came and got me to explain what he did. They were able to pass the drain through the stent this time to provide better drainage. Her right side is the only side that is draining. The left side is compromised by the tumor. If her bilirubin counts don't go down, it's possible that they will install another drain on her left side.
Let's hope and pray they don't have to do the left drain.

Radiation Consultation

4-12-12 Thursday

Met with Dr Hernandez today. He's optimistic that radiation can help shrink the tumor.
Monday next week Mom has a CT scan, they call is simulation, as she will be in the position for radiation. The Sr then has to mark every slice of the scan to show the computer the good tissue and the tumor. This process will hopefully protect the good tissue.
Then she will start treatment in about 2 weeks. Her treatment will be everyday, Mon through Fri, for 30 visits.
Keep your fingers crossed that it will shrink the tumor enough to allow Dr Sateya to perform the Chemoimobilization.

No more Chemo

4-11-12 Wednesday

Well, today was to be the start of round 2 on Mom's chemo. As you all know she was in the hospital until Monday night of this week. She missed an appt with her chemo Doctor on Tuesday due to being behind on mail. So when she showed up for treatment today they shuffled her over to see the Doc.
Dr. Isa told Mom that the chemo treatments weren't working and they are going to discontinue chemo treatment. How do they know that this second round wouldn't have made the difference. Seems to me like they don't want to waste their time with her.
Tomorrow at 11am we will finally meet with the radiologist for a consultation. I'm hoping that that isn't a closed road too.
Keep Mom in your prayers.
Thanks...

Coming home again

4-9-12 Monday
Mom's INR count came down relatively quickly after 6 units of plasma on Saturday.
Today the installed the filter in femoral artery so that she doesn't have to be on coumadin or any other major blood thinners.
He was released around 6:30pm, after seeing the radiologist. He gave her his direct line to call and reschedule for Thursday.

Good Friday in the ER

4/6/12 - Good Friday

Mom's primary doctor called this morning to tell her to go to the hospital via ambulance. Her INR is very high, meaning her blood is dangerously thin.
They will be admitting her to stabilize her blood levels. They will then decide to either put her on blood thinning shots 2x a day or install a filter in her artery. They will also replace her drain while she's here.

Chemo treatment update

4/2/12 - Monday
Ok, I know it's been a long while since I last posted any updates or info.
So 3/21 was Mom's first chemo treatment and surprisingly enough, she tolerated it very well. Of course she was tired for a few days afterwards, but she also doesn't know how to "slow down"...
The following wednesday was her second treatment and again, she did very well. She's been making the twice a week trip to the bowling alley to visit with their friends, but last Thur night she stayed home. She said she was really tired.
Mom still has a lot of spunk, but she's still loosing weight. So much so that her doctor has prescribed Carnation protein drinks. Problem is, she's on Coumadin and can't have vitamin k. The carnation drinks have quite a bit of vitamin k in them. No need to worry, I have her all set up with Herbalife protein shake mix and some added soy protein powder. Neither of them have vitamin k. She loved the chocolate/banana shake I made up for her tonight.
Tomorrow is her chemo day, but this is her off week. She will resume these 21 day cycles next Wednesday.
Monday 4/9 is her radiology consultation. She missed last weeks appointment. Since she missed her appt, I've taught her how to use her smartphones calendar for appt's.
On a side note: I bought mom & Kent (dad) matching magnetic bracelets.
Mom reports that her tumor pain has decreased since wearing it and dads pinky finger (arthritis) doesn't bother him anymore. I don't care if it's subliminal or real, her having less pain is worth it.
Later....

Chemo day 1 - Cisplatin

3/21/12 - Wednesday

Mom starts systemic chemo today with only one drug, Cisplatin. Her bilirubin count is still too high for them to use a cocktail of 2 drugs ( cisplatin + gemzar ). Once her counts are low enough or she shows she can tolerate the cisplatin, try will introduce the gemzar.
Mom is looking forward to starting her treatment too.

Yesterday we saw her primary doctor, Dr Sayeed. Very nice lady that loves mom. She's very hopeful that the treatment works.

Mom has a consult with Radiation this coming Monday at 9am. We are both hoping that they can do some radiation on the right side of her tumor to clear it away from the veins so that Dr Satya can try the chemoimobilization again.

Stay tuned, more to come!!

Discharge Day!

3/13/12 - Tuesday

Mom called me at 1:15 to tell me she's being discharged today. Well, we all know what that means, hurry up and wait. I got there at 2:30, packed up her stuff and took 3 bags, 2 coolers, 2 pillows & laptop to truck.
We finally walked out the front door at 4:15.
We are now waiting at the JPS pharmacy for 9 prescriptions!!
She's very excited to be almost home.

Something Special for Mom

3/2/12 - Friday
Kathy and I started working on sewing mom a new robe on Wednesday night and finally finished it around 7pm and I brought it up to mom. The robe, along with the new Blitzen Polar Crocs I bought her made her week!! She LOVES her robe and shoes.

Chemo Day 1 (or so we thought)

3/12/12 - Monday

Mom's in surgery to have Chemoimobilization (direct inject chemo into the tumor).
Procedure was to last between 1-2 hours.
The Doctor was unable to get the catheter into her tumor because it is pressing on the vein and he couldn't get into the tumor.
Dr advises us to start radiation & chemo to help shrink the tumor. He is hopeful that he can still do the procedure later.
Mom was visibly upset as well as being in some pretty bad pain.

Awesome News!

3/11/12 - Sunday
So I'm a little behind schedule posting this info, but here it is.
On Friday we spoke to Dr Satya, a chemo doctor at JPS. He showed us a quick sketch as to where Mom's tumor is and what his plan is. He wants to inject chemo directly into her tumor by accessing it through the femoral artery in her leg. Once he fills the tumor to capacity with chemo (cisplatin and gemzar) he will plug the vein with particles and wait 30 days for a new CT. There may be a chance thy he will have to repeat the treatment a few times, but the goal is to reduce the tumor so that it can be surgically removed. Dr says there is an 80% chance he can shrink it and remove it.
Mom and I were both overjoyed to hear this news as this is the most optimistic anyone has been.
I course this isn't any easy surgery, nor is it going to be easy on Mom. It's quite possible that mom could have severe pain following the surgery and flu like symptoms for 2 weeks.
All risks mom is willing to take to fight this. I'm so proud of my mom. She's a true inspiration to anyone that knows her.

Surgery Day

3/5/12 - Monday
Mom had surgery today to install a drain, again. They also unclogged her existing stent and put in a new one as well. So now she has stents in both ducts.
When they remove the drain, they will install a stent at the junction of the 2 bile ducts.
Mom has been in quite a bit of pain since surgery. Wednesday is the first day she's felt well enough to move around on her own.
Kathy and I are making her a new robe and I've ordered her some new Croc fuzzy slippers! She'll be excited to get them both tomorrow.

Back to the Hospital

2/28/12 - Tuesday

So we got home at 5pm and mom started repacking for her trip to the hospital. Kent went to get something for them to eat for dinner and they were at the hospital by 8pm.

2/29/12 - Wednesday
Mom finally got into a room on the fifth floor around 6:30 am. Around 7:30 they did a sonogram on her abdomen and then later on her legs. They found she had a small blood clot in her left leg.
The sonogram on her abdomen also showed the problem with her stent.
They will be moving her to the 7th floor, oncology, when a bed is available.

A Little Fun!

2/28/12 - Tuesday

Mom and I decided to stop and have a little fun on the way home from San Antonio. Of all things to do or see, WE decided to go to Inner Space Caverns in Georgetown. Before we could go spelunking, we had to wait for the school groups to finish their tours. So mom decided she wanted pizza for lunch and we went to CiCi's.
Our tour started at 12:30 and took about an hour and a half to make the full 3/4 mile trek in and out.
She was tired afterwards but said she had a great time and had always wanted to go there.
We made it home around 5pm.

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.

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.

UPDATE
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.

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 14^th 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.

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.