Friday, March 30, 2012

The evening of my biopsy.

The day started out at 7 with getting into my gown, IV started, BP cuff on, all that good stuff. At exactly 8 am I was getting oxygen stuck under my nose and they were ready to inject meds to "relax" me. This was when I was already in the operating room....I told them I wanted to see the needle they were using, they also showed me the biopsy after it was all over. I was expecting a hunk of my liver when it was very thin little lines that were pinkish red in color (in a glass like thing with water or something to preserve them). I also asked how many times a day they did liver biopsies....they did 5 or 6 yesterday alone. So that made me feel like maybe they did know what they were doing. There were a few times my eyes got as big as a tractor tire due to pain when they had that needle in there digging around but it didn't last long and when I got "that look" I think they made me drift off again. I had alot of bleeding much that they had to change my gown and sheets before taking me back to my cubicle for post-op. About 11, I started to feel the pain (about a 4 out of 10) so I asked for something to ease it. I had just took 650 mg of Tylenol and it helped a little but it did not get it under control. So then they were afraid I was bleeding internally. I guess your liver is like encapsulated and sometimes when there is severe bleeding, the blood can get stuck in between the capsule and the liver. So, they too me back to the OR (Operating room) and performed a CAT scan. It was clear and so they sent me on my way. Pat and I stopped on the way back to the room to eat although I was still feeling some pain, I thought I could hold out for more Tylenol until we got back to the room. Well, by the time we got done eating, I was at about a 7 on the pain level. I think Pat could see it on my face as he ate FAST towards the end. I got to the room, put on my nightgown, and took a 500 MG Tylenol. I crawled into bed and didn't get up til about 3:30. I had a nice nap and didn't even hear Pat check on me twice during that time. It is almost 7 pm and I have only had to take one Tylenol 500 mg around 7. We have ordered a pizza and it should be here soon. We will start home tomorrow morning and plan to drive straight through instead of stopping overnight. I sure love this upgraded room!! I can sleep and Pat can watch tv in the next room. Thanks for all prayers!  I am glad it is over and hopefully they will not want one for another 5 years!!

A Small Hiccup

I got the following text from Mom about an hour ago:
"I just got up from a nap. Was in some pain when we left. They were wondering if blood had pooled between my liver and the capsule like thing that covers the liver.. happens sometimes.. so they took me back to OR and did an extra CT to make sure it wasn't happening. It wasn't so they let me leave about 12. Pain was terrible and I bled so much they had to change my gown and sheets in OR before going to pre-op room. Feel better right now.. thank you Tylenol and the Dove easter bunny whose head I just bit off!!"

I guess my post earlier today wasn't QUITE accurate :(   I just talked to Mom. I think it's fair to say that her sassy-ness is back :)   Obviously there were some hiccups, but it sounds like she's feeling better now. Please pray/send good thoughts & vibes that she continues to heal and has no more complications.

Written/Posted by Jenn.


Mom called around 9 a.m. She was out of the surgery and in post-op. Cell phone signal in the hospital is terrible so we could barely hear her.. She said that the surgery didn't hurt and that everything went fine, but she was bleeding more than they would like, so they put some 'Styrofoam stuff' in the incision. She said they didn't seem too worried about it (and neither was she).

I've been unable to get in touch with her since then, but I assume she's resting in the suite. Just wanted to let you  know that she is doing fine. :)

As always, thank you for your prayers.

Written/Posted by Jenn.

Thursday, March 29, 2012

A pleasant surprise!

We only had about a two hour drive to get to Houston we just parked the car in valet at The Rotary House. We then ate lunch, got my bloodwork taken care of, and met for our pre op visit with a physicians assistant. She goes over the"s and do BP was 117 over 79 and oxygen was 99%. See....I told you I wasn't nervous..... 
I got a call that a cancellation had been made and they had an opening for pre op at 7 and surgery at 8 so I took it. The sooner we get it over with, the quicker I can get back to Olney. The procedure will take about 45 minutes where they will make a small slit (the slit is so small it doesn't even require a stitch.) in my side and go in with a biopsy needle covered with a plastic sheath (in between ribs two and three usually). The plastic sheath will stay in me the whole time during the procedure (so they don't have to keep taking it in and out of the tumor). the only thing coming in and out will be the large needle. They will also move it around with the sheath protecting the needle to different parts of the tumor to get different areas for a better look at the cells it is made up of. Once surgery is done, I will be in post op for about 3-4 hours to watch for excessive pain, bleeding, etc. They don't even send me home with any pain meds......most people can control it with Tylenol but if I need more tomorrow once back to the room, I can call Dr. Javle. An interventional radiologist will do the procedure which means he is a radiologist with special training in biopsies anywhere on the body. I asked to see what special training the person had and how many times he has did this procedure. Made me feel better to know I wasn't the first pin cushion.
When I checked into the room while Pat smoked, it was a suite which runs about $200 compared to a room with two double beds that runs $121 a night. This suite had a full size kitchen, bedroom, family room, small dinette area, bathroom, and a cosmetic area.It even has two flat screen tv's!! Pat booked the room and I have always booked it before so we were a little concerned about the additional charge when we really don't need that big of a room. So, after a trip to Target and Red Lobster, we went back and asked them about it. They upgraded us for free due to my surgery tomorrow........ hmmm......
So, as I sit here in my pj's, I ask for all the prayers and warm thought as I lay in a cold surgery room all morning. There are so so many sick people here....and you can tell it by just looking at them.  I am just as sick ....I just don't feel like it so far. I thank God for that daily and I ask for strength tomorrow. I have no doubt HE will be right beside me. It is the best feeling in the world and what makes me look forward to each day.
I will post tomorrow evening if I am up to it.....I am sure I will. Next week, I start chemo on Wednesday....not sure what the potion is yet but I will be on the lookout for an allergic reaction as soon as they put a needle in me.
God Bless!

Tuesday, March 27, 2012

Back to Houston.....

Well....Pat and I will driving to Houston this time to enjoy the beautiful weather and just take our time going down to Texas. I am scheduled for a pre-biopsy appointment (which will last about 20 minutes) on Thursday. Then on Friday at 11, they will start prepping me for a large needle biopsy that starts at 12. I have had a small needle biopsy and it was not so fun. SO......this one should be a real dream as they call it THE LARGE NEEDLE BIOPSY. There is something about those words that make me pucker. Got my big girl panties so I am sure I can handle it just fine.
I also asked if we could start for home after the biopsy was over and was told...oh no, we want you to stay at a hotel close by in case there is severe pain, swelling at injection sites, or severe bleeding. So, I had to book an extra night at our hotel. Not a big deal but since we stay at the hotel that is linked to MD Anderson, I would have just been upset if there were no rooms available.
Dr. Javle (from Houston) had talked at lengths with Dr. Dy at Crossroads Cancer Center in Effingham and Dr. Javle is confident Dr. Dy can handle things if I go into anaphylactic shock during a chemo session. They are to call today with my appointment for chemo. They would not say what chemo potion I will be getting.
Back to the biopsy, it will be able to tell us better what chemo to use to fight the cells my tumor are made up of and to also see if there are clinical trials that I might benefit in. It will be atleast 30 days until we get the results of the biopsy.
On another note, did you guys come to the Italian Beef Fundraiser. It was CRAZY as far as the turnout and the amount of money we made!  Thanks to all of you who came and ate or got carry out. Thanks for the people who drove from St. Louis area and from Indy.....I was just amazed at the people. We sold out about 20 minutes before the fundraiser was suppose to end but that was ok. I think The Gypsy did pretty good too on selling the cold beverages. Glad to help my son-in-law out!! ;-)  We also did terrific this past Saturday morning with our 31 Party. Tiffany Grove did an outstanding job of presenting her products and we had a kickin" good party/turnout there also. We are doing good at the Tastefully Simple orders but we are still taking orders for both products so if you think you missed haven't . Just contact Amy at 843-8603 since I will be out of town all weekend.
I wanted to share with my followers that I have had 32,435 "hits"on my blog since I started a little over a year ago. Isn't that just crazy....hard for me to "take that in". Just wanted to share that with you.
I was feeling jiggy Saturday and decided I would have Pat air up my bike tires for a ride on Sunday. I rode 3 1/2 miles south and felt really good. Then I turned around and about died at the wind speed I had to fight all the way back home. Slow but sure, I pedaled my way and made it back to Suntone Road. I will probably not ride for a bit after the biopsy so it has plenty of time to heal. I will update after the biopsy if I am coherent.....I hope they give me lots of drugs so I have NO PAIN for atleast a day or so.
Send lots of prayers my way as I travel to Houston and that the biopsy is just a walk in the park.  And that my husbands driving is at its best ;-)  !!

Wednesday, March 21, 2012

The Patient Speaks.......

Well.....I have pondered on what to say after the last results. There is only one thing to say.....let's get a new plan in place and get on with it. I do not go to Houston until the 29th & 30th of March for the biopsy. In the meantime, Dr. Javle is consulting with Dr. Dy to see if he feels equipped in Effingham should I go into anaphylactic shock. With all that said, it is just a waiting game, although I will give it until the first of the week before I call Houston to jump start their engines!!
At first, I was really bummed about the results of the tests from Houston but God is in control and once a new chemo regimen is in place, those lymph nodes and the nodule in my lung will go away. Then we can get the brightness of the tumor down again and maybe start some kind of radiation regimen. They are talking proton therapy radiation but there is also a couple of other types Jenn is investigating.
I am still calm and take each day as it comes. My journey is not ready to come to an end by any means....not for awhile. For goodness sakes, I have flowers to plant, Easter to celebrate, the Easter Bunny for the grandaughters, and vacation in July with all the clan in North Carolina!!
I still pray 5-6 times a day for everyone suffering from something...not just health problems, and I also ask God to walk beside me every step of the way on this journey. I thank God for all my friends and people who have came forward just to be a shoulder for me to lean on. I close, don't feel sorry for me, that gets me nowhere. Pray for me, then pray some more. I feel good...I have no pain for the most part...and I walked two miles yesterday. I'm doing well.....I savor every moment on this green earth and when I wake up each morning, it's just another day I can thank God for letting me be apart of it!
Hugs, Prayers, and Happy Lenten Season,

Thursday, March 15, 2012

Unexpected News

We were called back to a room in the GI department at 9 this morning. Jackie (Dr. Javle's P.A.) came in 40 minutes later with news we haven't heard before: Mom's tumor is growing. It has increased FDG-avidness (it's brighter) indicating more metabolic activity in the tumor. There are also a few lymph nodes near her liver that have increased in size since October. There is a small spot in her lung that has increased in size and is now FDG-avid. Increase in size of the lymph nodes and brightness in the spot in her lung likely indicate cancer.

Dr. Javle thinks that Mom is no longer stable due to the two-month chemotherapy hiatus she had from September to November, and because her chemo regimen has included only Gemzar and Tarceva (no Xeloda (FU-5) or Cisplatin) since the first week of January. Gemzar and Cisplatin/FU-5 are thought to be the best combo of drugs for intrahepatic cholangiocarcinoma.  Mom had an allergic reaction to Cisplatin in August and an allergic reaction to Xeloda in January. Dr. Javle is recommending that Mom be desensitized to Cisplatin and/or FU-5 in order to resume that regimen. Desensitization would involve additional medications before administering IV Cisplatin/FU-5 and administering the chemo over about six hours (instead of one hour). These precautions would hopefully ensure that she doesn't have another reaction. Mom will stop taking Tarceva and all its related antibiotics now, since the tumor has grown, and it's obviously not working.

Depending on how comfortable Dr. Dy  at Crossroads Cancer Center in Effingham is with handing the desensitization and a potentially serious allergic reaction Mom may go to Barnes-Jewish Hospital in St. Louis to get chemo (one day, every other week). Dr. Javle seems very confident that resuming the Cisplatin/FU-5 will force Mom's tumor to become stable again and effectively treat the lymph nodes and nodule in her lung.

In addition, Mom will return to MD Anderson late next week for a biopsy of her tumor. The last biopsy she had was at Mayo Clinic just after she was dianosed. Dr. Javle would like to send the tissue to two labs to undergo genetic testing. The biopsy at Mayo was a thin-needle biopsy and was pretty painful. The biopsy occuring next week will involve a bigger needle in order to get more tissue. It's definitely not something Mom's looking forward to, but the testing will allow Dr. Javle to cater her treatment to her tumor and potentially enter new clinical trials.

Though not the news we were hoping for, Dr. Javle assured Mom that she is doing much better than she was when she first came to MD Anderson one year ago. She is still very healthy, and Dr. Javle thinks that is indicative of Mom's good prognosis. When Mom asked him if she would still be here in six months or a year, he replied, "You will definitely be here in one year. You're in good shape. I expect you to be here for a long time."

Please pray that Dr. Javle formulates a chemo regimen that keeps Mom's cancer under control. And pray for Mom. Hearing that the tumor has grown and that there are a few new spots is understandably very difficult for her. The next few weeks as she gets used to the new treatment plan and comes to grips with a 'new normal' may be even more difficult.

We have much to be thankful for, as the PET scan could have revealed much worse than was reported today. Thank you for your prayers and good thoughts/vibes. Please keep them coming.

Written/Posted by Jenn.

Wednesday, March 14, 2012

Relaxing in Houston

Today was a more relaxing day. Mom's PET Scan was at 9 this morning. It took a little over 2 hours, and then we had an early cafeteria-type lunch on a patio. The location was fabulous, but the food was more questionable. We rested most of the day after lunch.

This evening, Cindy Bateman met us for dinner. It was SO nice to see a familiar face. We had a great dinner, and then enjoyed catching up in the garden. Great conversations and lots of laughs made for a wonderful evening. Thanks again, Cindy!! :)

Mom's appointment with Dr. Javle is at 9 a.m. tomorrow. He will tell her the results of the scan today. Please pray extra hard tonight and tomorrow morning that Mom's tumor hasn't spread and continues to be stable (and has maybe even shrank! :). We will post tomorrow as soon as we know something, however, if the news is less than stellar, then it might be later in the day.

Written/Posted by Jenn.

Tuesday, March 13, 2012

Livin' It Up in Houston

Mom, Pat, and I left Olney at 6 a.m. this morning bound for St. Louis (okay, I was running late, as usual; we left at 6:20) to catch our 11:00 flight. Had two calm, smooth flights and landed in Houston at 3:30. Our driver, Moh, was waiting with a cute little sign as we approached baggage claim. You know, the guys who stand with signs for 'cool kids'..? That's us now. :)

The remainder of the day has been filled with lab work for Mom, walking through the gardens near The Rotary House (the hotel we stay in), and eating dinner. Mom's feeling sassy, and even asked a 108 year old man to race as he was waiting to get lab work completed. He replied that he couldn't race, but he could try to catch her :) lol.

Mom and I are now preparing to watch last night's episode of The Bachelor (SHH. DO. NOT. TELL. ME. ANYTHING.). Spirits are high, and we are enjoying ourselves. Mom's PET Scan is tomorrow at 9 a.m. She should be finished by noon, then we plan to enjoy some more fabulous Texas weather!

We will post tomorrow evening to update you on the days events. We're thinking of looking for a nude beach :D

Written/Posted by Jenn.

One of many MD Anderson buildings on The University of Texas Medical Center Campus.

Our favorite place in the gardens.

Miscellaneous photos of flowers in the gardens near The Rotary House.

We watched this bird take a bath for a long while. It was quite comical.
 Mimi: do you think this counts as a bird baptism?  :)

Friday, March 9, 2012

Couldn't be better.....for now....

I called Dr. Goswami in Springfield to get my Anti XA (you pronounce it "Anti Ten A") results from Tuesday. I was up to .69 which is too high. So, we reduced my Lovenox shot a little and now it is at .5. This is the "perfect" number we want it to be. Keeps the blood clots and brain bleeds away....we pray. Dr. Goswami is a genius to think of using this test....or asking other doctors until he found a test to monitor my blood. Something Dr. Dy wasn't hopping on or thinking of. ANYWAY.....I am in perfect range with the blood clotting factor. Now.....let's get on with it, Houston. I am sure my platelets are climbing as I am feeling sassy today. I walked to Ophelia's for lunch also. Then I hurried back to the office as I started a "mini marathon" to raise money for our Walk & Roll group (on Facebook). I am like on cloud 9 from all the generous people donating money today. I love you all and when I get better, I am gonna have the biggest party ever!! And now for the somber part.....If I go to Houston and get bad results.....well.....get out those big girl panties cause it might be a bumpy curvy road. I have had a life full of joy, of learning, of finding God, of having four biological children and two step children, PLUS DING DING DING the added bonus of two grandaughters and a grandson to be born in June. God has been good to me and if bad reults are what we get.....I will ride this mustang til the end with all of my friends. I had bad vibes three months ago and everything was just fine (and Jenn made sure I was scolded for thinking bad thoughts) but I am having some different pains and it worries me. Maybe it is because I am older......maybe.
God Bless You with

Tuesday, March 6, 2012

Good lab results......

Well.....all the sitting around...sleeping....eating red meat....praying....praying more...and then some more...has definately paid off. Although my labwork is not perfect, it is up and rising from last week. Last week~platelets were 71,000. My oncologist was afraid they would plummit even more after my last treatment. That is why I really refrained from doing anything more than going to church Saturday evening. So, today, I waited in the lab until the results were back and the platelets are up to 114,000. It is still not "within range" but it will be two weeks before I start the 3 weeks in a row of chemo (and this headache starts all over again). That's just it....I have had a slight headache and it is the first sign I had when I got the brain bleed. It was a severe headache and so far this one is not....
So.....I will wait for the Anti XA results (which determines my blood clotting factor) and see if my blood is still on the thin side. It takes about two days to get these results back as the blood is sent off to be tested. IF it is still too thin, I will back off even more of my Lovenox shots.
I have had NEW angels in my life this week. One is Reenie Cummins who is my ex-husbands cousin. Her father was a doctor in Massachusetts and he has a son who is also a dr. To make a long story short, there is a neurosurgeon, gastroenterologist, and an oncologist (about to marry into the Cummins family) all in Massachusetts. Then her sister's husband had a liver transplant as Massachusetts General Hospital (known to be one of the best hospitals in the US). So, I feel she has been sent my way to maybe connect me with someone willing to take a closer look at my "monster". It's alot to take in but please pray this is the minute I have been praying for.
There is a new lady at RMH registering people and she was my second "angel" today. Usually I get a young girl who just wants to register me and move me on.....well this lady who just started part time is an A+ in my book! She made me feel welcome and I even gave her my blog address. She is definately a good addition to RMH! I just felt as if she was "sent" to me today when I needed a positive force before my labwork.
As of today, my blog has had 29,473 "hits" in one year. That is crazy to me. So I hope each person who has peeped at my blog, or check it frequently to check up on my health says a prayer each time for me to be healed. Or to find a dr willing to take this monster out of my body!!
As I close, I ask each of you to just the beauty God has put in front of us. As I held a grandbaby Sunday night, watching those big snowdrops fall, I teared up from just watching God's beauty. I asked for a nice beautiful snow atleast once this winter and it finally got here on Sunday. After all of my girls left that night, I stood outside just to LISTEN to the sounds of the snow hitting the ground.......these are things alot of people take for granted. 
I ask for prayers, thoughts, and more prayers as I head to Houston on Tuesday evening. No matter what, God is right beside me and that is the best feeling I have ever had. No one can take that from me~ Amen!!
P.S. As you can see, I believe in Angels and that God sends them our way to keep us grounded in our faith when we need it most!!
Hugs & Prayers,

Monday, March 5, 2012

Rest and Renew

The past week has been rougher than usual for Mom. The large drop in her platelets dramatically affects her energy level. She worked a couple half-days after Tuesday, but mostly rested all week. Compounding her tiredness, Mom's Anti-Xa test was higher than preferred, so Dr. Goswami dropped her Lovenox dosage again. Mom can tell her blood is much thinner than usual, since when she gives herself her Lovenox injections, the injection site bleeds; something that is definitely not typical. 

Mom will have a CBC tomorrow to check her platelets. Hopefully they're on their way back up. If not, she will likely get her first transfusion of platelets tomorrow. She'll also have her Anti-Xa tested to be sure her blood is clotting better. 

By Saturday morning, Mom was feeling more like herself. The girls and I fixed lasagna last night. It is refreshing to have all of us together, and I know Mom enjoys it. A big thanks to Mimi for making dinner for Mom and Pat on Friday evening, and for the awesome cheesecake last night.

Please pray for Mom's continued strength of mind and body. The roller-coaster that is chemo/cancer is so rough on her. And the most intimidating journey is to Houston to get the results of the PET Scan. Please pray that the results are good and that her cancer remains stable. 

Thank you so much for your prayers thus far. Without them, God only knows where she would be. :)

Written/Posted by Jenn.

Thursday, March 1, 2012

This is the time I hate!

Waiting.....until I go to Houston. I received my third week of Gemzar in a row and it made my platelets go from 276,000 to 71,000. And that was before they went ahead and gave me the third round of chemo Tuesday so I imagine my platelets are still on their way down. Dr. Dy said he will have me go to the local hospital next Tuesday and do a CBC to see what my platelet count is and if I need to get platelets before going to Houston. I am ALOT uneasy about my Lovenox shots making my blood too thin and getting another brain bleed /or a bleed anywhere internally. I am suppose to rest alot as this will help build my platelets back up. Next Tuesday while at the local hospital, I will also have my blood clotting factor checked to make sure my blood is not too thin.
So......I have went from 110 mph to about 50 mph and I do not like it. A little of it is mental maybe because I am anxious about going to Houston and getting the PET scan.  All I can do at this point is pray for strength.
I am used to my bloodwork being so good (and my doctor always comes in to the room all happy and excited because my labwork is usually so good; this week he had a totally different tone). But we just recently went to chemo 3 weeks in a row since I am allergic to the other chemo they like to partner Gemzar with (I'm allergic to Cisplatin). Dr. Dy says you have to get it three weeks in a row to do any good when you get Gemzar by itself.

I have made it past the one year mark of having this ugly monster called intra-hepatic cholangiocarcinoma. It has not been the easiest ride but it could have been so much worse. And, I suppose, someday it could get to the "worse" status.....but until then, I will continue to pray for strength and determination. I will take each at a time....and thank the good Lord every night I lay my head on my pillow at night.
Hugs & Prayers