Legs a little better

Mom's legs are a little better. She is still having trouble walking for any extended period of time, but has been getting out and about in the wheelchair every day. Yesterday she went shopping with Shan and Jenn. Later, we all met up with the Sipes family again, and went out to eat at King Fish on the river. Mom's appetite is very good. She has been on the appetite stimulant, Megace, and it's been working very well. Unfortunately, we all ate way too much fried stuff. Fried fish, fried shrimp, fried onion rings, fried clams, fried oysters, fried hush puppies, french fries, everything fried. Im glad Mom got some calories, but the rest of us might have taken a couple years off our lives. I felt like going straight to a cardiologist for an angioplasty. Fried stuff is so yummy, but once it's in your belly, it really is regretable. Jenn and I felt so sick on the way home. Purging never sounded so good.
Mom plans on getting out again today, even though it is a nasty, rainy day here in the Ville. Im glad she is staying active.
God Bless,
Boog

Eating Good

Yesterday, we had an impromptu get together and dinner at my house. Mom said she was craving some crab cakes so Jenn and I went to Costco to get some goods. When mom gets an appetite for something, we all rush to make it available, because it doesnt happen all that often. While we were at Costco, we found out the party had grown to 16 total (My family, Shan and kids, Mom, Sarah, Mee-maw(my paternal grandmother), and Christie Sipes and her kids). The more the merrier, right. After buying enough food for a small army at Costco, we got to cooking. Check out this menu: Baked Crab cakes with home-made tarter sauce, grilled tri-tip steaks with grilled red and yellow bell peppers, fried chicken wings, grilled red onions, loaded baked potatoes, steamed brocolli, and cantaloupe. Someone might have made a salad, Im not sure, I didnt get that far. Mom ate great! I ate greater. Everyone had fun and enjoyed each other's company.
While Mom is still having problems walking, she refuses to let that keep her down. She is determined as ever. She continues to show tremendous inner strength, uncompromising resolve, and mental toughness that never ceases to surprise me. Who knew, that under that easy-going, free-spirited, and fun-loving facade, was a tenacious, spunky, never-quit fighter, ready to battle for all she's worth. She's doing it with lots of help from above and with lots of prayers headed in that direction.
Love,
Boog

Great Appointment Today

I woke up pretty early this morning, checked on mom and she was hurting. Her legs were in alot of pain. I prayed with her, rubbed her back and she went back to sleep. The mornings are mom's worse lately. she seems more stiff and tight in the legs. Our appointment was at 2:30 and Dr. Miller and the nurse was commenting on how much better she looked. She weighed in at 141 lbs. YEAH MOM!!! Praise God....thank you Lord I needed that. Mom lost 8 lbs. in 3 days. If it were only that easy for me :) Dr. Miller was just so happy that mom looked so much better. He ordered another infusion of Albumin, so we all headed to the 2nd floor for that -- it took about an hour or so. Dr. Miller also gave us a prescription for a wheelchair since mom isn't doing the best at walking. That is okay, one day at a time. I asked Dr. Miller if he had any objections if I took mom to Memphis and he started recommending BBQ places. Mom has been really wanting to get back down there with me so we are going to see how she is and I will possibly bring her down next Friday. Today was a great day for our whole family. Can i tell you how remarkable our mom is. She has never complained about one thing yet. Mom has never let her mind, nor her heart be pierced by any of this. It is only her physical body that has been effected. She is truly inspiring. That is our mom. Pray that more fluid comes off and if you can specifically pray for better mobility and strength that would be wonderful. I thank you for all your prayers. We have heard them from all across the country.

pray for mom -- love to all, Shannon

"Trust in the Lord, with all your heart, and do not lean on your own understanding. In all your ways, acknowledge Him and he will make straight your paths. Be not wise in your own eyes. Fear the Lord and turn away from evil. It will be healing to your flesh and refreshment to your bones." Proverb 3: 5-8

Amen to that!!!!

Appointment Today

Mom has an appointment at 2:30 with Dr. Miller. The albumin infusion seems to have helped a little, so I suspect he will want to give Mom another one today. Last night, the swelling had gone down enough to at least see the form of her kneecaps and ankles. They are still swollen, but 2 days ago she couldnt bend her knees at all and her legs looked like long water balloons that were ready to burst. We need a lot more fluid to come off to get her back to walking better.
God Bless,
Boogie

Waiting On The Lord

Can i tell you that this has been the biggest emotional roller coaster of my life. I have been to a gazillion bible studies and you always get to those passages like in Peter or James that talk about trials and how it is good faith building, and we will grow in Christ. Well, honestly it really sucks. Right now I don't want to be tried, I don't' want to be uncomfortable, I don't want to be tested. I want everything to go back the way it was. Ahhhh, me and my selfish pride. Lately I have been telling God to just please rewind my life like 2 years back. I would even take 9 months back. Everything was comfy, cozy. Nothing crazy going on, just the day to day things. I like it that way. I thought taking care of 4 kids with a husband always gone was the toughest thing I had to deal with in my life. It's funny how things get put in perspective. Now, me and my family are always on our toes. "how is mom going to be today" " how much weight has she lost or gained." I have never had sleeping problems and now I dread closing my eyes. This past week has been the hardest as well. There have been so many words that have been spoken, so many words from the doctors and others that pierce my heart and I am sure my whole family. I have never felt more afraid for my mom's life until now.

But here is the beauty of my Lord God. He tells me to not worry about the things of tomorrow, for today has enough worries for themselves. Today my mom is ALIVE. Today she looks at her 7 grand babies and kisses each one of them. Today Nate lays his head on her lap and gives his gig kisses and hugs. Today I got to rub my moms back while she lay in bed. Today we laugh.

I will wait on my Lord. I cannot rely on what the doctors say anymore about my mom. I love Dr. Miller and I think he is a genius, but he doesn't' know what is going on with mom. He doesn't know why she has so much fluid buildup, or how to get it off. If I have been studying for so many years on how to trust in God, how can we do it if we don't' have practice. Would I want a different test? Yes. But I put all my trust in God that He knows what He is doing. I am trying to be as obedient as possible. It is very difficult. This past week I have felt abandoned, lost, and forsaken. But I know they are lies. My God is with us the whole entire way. I have told a couple of people that I am reaching out my hand and I just need to feel His grip. He is not just holding my hand but carrying me and my family (esp. mom) the whole entire way. I know I cannot walk on my own.

Pray for mom -- love to all--

shannon

Quick Update

Mom has lost about 5 lbs of fluid. The Albumin might be working a little. We are trying to schedule another appointment for tomorrow to see what Dr. Miller thinks. Mom's lowest weight has been 120 lbs. Monday she weighed 150, so she had about 30 extra lbs of fluid. Today she weighs 145. Still lots of fluid, but maybe we've curbed it a little. Her speech is much better. She had taken a Xanax pill to relax herself during the Petscan and that was why she was slurring her words the other day. She is a very cheap drunk. One of those things was probably the equivalent of a triple dose for anyone else. She is still having a hard time walking.

Appointment News from Yesterday

Mom had a Petscan yesterday morning followed by an appointment with Dr. Miller. Mom's legs are still super swollen. The Lasix has not done much to remove the fluid. Her legs feel like they weigh 50 lbs each and Mom can barely walk. She used a wheelchair yesterday. The Petscan revealed that her tumors really havent grown much since her last one, June 12. Maybe 5-10% at the most. But Dr. Miller said the problem is that her body is starting to wear out. She has been fighting and fighting. She has had all these tumors for months sucking energy out of her body. He is not sure how much more her body will be able to handle. He is not sure if we can get the fluid to go away now. Her gamma knife appt was cancelled and all treatment has been put on hold until we can solve the fluid problem. Her protein levels were low, so they gave her an infusion of Albumin, hoping the protein would help with the fluid. If we cant get rid of this fluid, Mom's quality of life is really gonna suffer. Im scared she will be bedridden before long. We are going back to see Dr.Miller at the end of the week. If the Albumin has helped, Mom will get another infusion. If it doesnt, we'll have to try something else. Dr.Miller said he was going to talk to some of his collegues about other ideas. For him to be scratching his head so much about this fluid does not make me feel very confident. Shan and the kids are coming in today. They usually give Mom a boost of energy. Let's pray that is the case. Thanks for all the prayers. We need them now more than ever! Ill update as much as possible.
God Bless,
Boog

NO TAP AGAIN!!

Mom is feeling really full and so I called in to see if mom still had her weekly tap scheduled. She did, so Jenn picked her up to take her. The nurse (Brooke) that assists with the tap called me to tell me that mom's bowel is swollen and they couldn't tap her. I asked her if the radiologist thought it was swollen from the tumors or maybe could be impacted. She said from the tumors. Brooke also noticed that mom's speech is really impaired and she was have lots of trouble walking. I noticed her speech this morning too but she is usually worse in the morning anyhow. Today was a bit different and now that Brooke noticed it it makes sense. I know she was implying that she could have had another stroke but she didn't come out and say it. The radiologist had Brooke call Dr. Miller to see if there is anything else they could do to relieve mom's pain. We haven't heard back from anyone just yet. Tomorrow is PET scan in the early am and then an appointment with Dr. Miller. Boog or I will post ASAP.

Pray for mom --shan

Just wanted everyone to know that mom's PET scan is scheduled for Tuesday at 8am and then results at noon with Dr. Miller. Shan

Appointment News

Just got off the phone and wanted to blog because I know alot of you are waiting to hear the news. I must say it is better than I expected. Dr. Miller examined mom and then had her blood drawn. All her counts are good. Liver and kidneys working great and platlets are where they should be. He is ordering another PET scan for next week. In the meantime, he is making her double up on Lasiks (sp) and giving her another diretic for all the swelling. The gamma knife is still set up for next Wed. but the ONTAK will be on hold until we know more information. If there is anymore info then Boogie will post it.

I couldn't sleep at all last night. I had to get in the Word hard and remember that God is good ALL THE TIME. It is so hard to trust in that, but that is where my hope lies. Pray that all this fluid flows out of mom. She is such a trooper. I plan on going back up to KY by Wed. if not sooner.

Love to all, Shannon

Dr. Miller Appointment Tomorrow

Mom went to try to get a tap yesterday. The radiologist couldn't find any pockets to drain the fluid. I could tell mom didn't want to talk about it so I called the nurse that assisted the perithentesis (sp) and she transfered me over to Dr. Burg who was the radiologist at Suburban yesterday. Dr. Burg pretty much told me that her tumors are growing and are now filling the space where all the fluid has been. She said that this could be the result of all the fluid in her body. She told me that I needed to contact Dr. Miller and discuss our next plan of action. I tried to get more info out of her but she really didn't want to discuss anything since she isn't mom's official doctor. I called Dr. Miller and told him all what the radiologist had to say and Dr. Miller said he was hoping for a different outcome of mom's treatment. Dr. Miller wants to examine mom for himself tomorrow. I have to tell you that through all of this Dr. Miller has been the most compassionate doctor that we have dealt with down at the clinic. He has treated mom like family, and when I called him yesterday he told me that he was so happy I called and not to ever think I was bothering him. We are blessed to have him as mom's doctor.

I don't' know what all of this means. I don't' think it is good. The crazy thing is that mom's spirit is so strong, she is going out still, hanging out with friends and living life to it's fullest. But when you see her body, you really don't know how she is doing it. Yesterday, I told her she has to settled down and get her legs elevated because they are so swollen. She told me that she would but she is going out with friends Thursday and Saturday. Oh BTW she went over to a friends house on Tuesday night and didn't get home until 11:30. She is amazing.

Please pray -- I don't' know what for anymore. Strength, Peace, Trust, Faith,.....all of it. Probably more for me, Boog, and Sarah, Jenn, and the rest of the family. I am also scared that tomorrow's news will put mom into a depression. Please pray for that as well. I will not be able to go tomorrow because I am in TN. Sarah is also going to Nicaragua tomorrow for a week, so it will just be Boog and Jenn and possible Michael, mom's brother. Someone will post as soon as possible.

Love to all --shannon

No Tap again

Mom tried to get tapped again yesterday. They had the same problem of not being able to find a pocket to drain the fluid. We are very concerned since she has gained a lot of weight through swelling the past week. The radiologist fears her tumors have grown. Shan called Dr. Miller and got an appointment for tomorrow to see what he thinks. I will update tomorrow how the appointment goes.
God Bless,
Boog

Our Swollen Mom

Poor mom, she has been so swollen for the past 3 weeks, but this past week she has started retaining lots and lots of water in her legs. If you can imagine also, the swelling is in her face, hip and arms. Since last Monday she has gained 16 lbs. Her legs are so swollen, I cringe when I touch them. We have all talked to the doctors about it and they tell us it is the cancer. Really?? They give us no idea what we can do. Yesterday, after leaving KY (I had been there all last week) I called Dr. Millers nurse (Kelly) to tell her how much mom has gained. She ordered some lasics (sp) and a potassium pill. Then Julie took mom to get her tapped and the radiologist couldn't find a pocket big enough to drain the fluid and so they sent her home and told her to return Friday. I about drove the car off the road when mom told me. Her belly is so swollen. I dont' know how she is doing it. Once again, mom is incredible. She said yesterday that if she gains a couple more pounds she is going to be FAT. She doesnt' even complain. I do enough for her I suppose. She gets upset with me because I get freaked out and start calling all the nurses. They say it can be a result of being on ONTAK all last week but I dont' know if I agree with them since it has been going on for a while.

Among other news, last week mom's brother, Michael came in to see her. He is staying until the 23rd. Then my dear friend from NY, Nadine, came in town as well to see mom. We have had such a great time just hanging out. Mom has really been on this Margherita/Bloody Mary kick lately-- it has been pretty funny.

Please keep mom in your prayers. Pray for this swelling to go away. And praise God for her beautiful spirit through all of this -- she is a true inspiration.

Love, Shannon

Mom on ONTAK round 3

Mom had her appointment today. We actually saw Dr. Chesney this time. We had lots of questions. They decided to put her on Ontak today and also take her off Keppra which was the anti-seizure medicine. I am hoping that taking her off of Keppra will help her swelling go down. We will see. I actually came up on Sunday instead of Monday. mom had been pretty down lately and the kids always lift her spirits. So I packed up all the kids and left poor Gavin at home in Memphis. Last night we went over to Jenn's house and I cooked dinner for everyone and then we just hung out with mom and all the kids. Mom had a great time. Jenn and I are still trying to figure out a place and flights for a girls trip. Nothing else new -- mom has ontak for the rest of the week. I will write and update soon --

Pray for mom -- Shannon

Appointment today

Mom has an appointment today with Dr. Miller. She had a tap yesterday and was feeling a little better after several bad days the past week. I'll post again with more details after we see Dr. Miller today.

A Long Day

I got to Mom's house at 4 AM yesterday. She was getting sick when I got there. We piled into the car along with her essentials; quilted blanket, pillow, and puck bucket, and got to UK hospital around 5:30. We waited, waited, and waited some more. Then we waited. Next, we got back to the room where they started monitoring Mom's vitals and tried to start the IV. Mom's blood pressure was running low again. Lots of readings around 85/50. The nurses were very, very nice and pleasant, but apparently failed "find a viable vein for IV 101" in nursing school , and continued to stick Mom without success. Finally, they called in a veteran from a different department and got it done. Next, we waited. Then they drugged Mom up with some sedatives and put the head brace on. They finished putting it on sometime around 10:00. So, for four and a half hrs they accomplished IV, meds, and head frame.

I was not prepared to see Mom in that head brace/Halo thing. It was disturbing. Sarah and I looked at each other and didnt know what to say. I kept asking Mom over and over, "are you comfortable?"because I simply couldnt believe that it was possible. She was wide awake, but sedated, and claimed to be okay. She looked like a creature out of Star Wars, sorta like Darth Vader when he takes his helmet off in Return of the Jedi. The whole frame was supported by 4 bolts that were tightened into her head. They werent screwed into her skull, but were tight enough to see small strands of blood that had dripped down from each of the 4 points in her scalp. Mom was very talkative, slurring her words, and making jokes, so I knew the drugs were working well. When I told her she looked like Darth Vader, she picked up something, pretending it was her light sabre and said, "Cancer.....you will die". Drugs are good!


Next, she had her MRI, which revealed a total of 6 small lesions. None of the tumors were more than 4 mms in diameter. Then, we waited. Having Mom wait around with that enormous contraption on her head made Sarah and I cringe with each passing minute. If nothing else, it was so visually uncomfortable. I kept waiting, expecting to see her brain start to leak out from one of those screws. Both my eyes naturally squinted as a reflex when I stared at that thing. They started the gamma knife around 2:30 PM. Because the tumors were scattered around different areas of her brain, and the position of the head brace, the gamma knife was unable to reach all 6 in the same session. We are gonna have to go back and do this all over again to get that last one. That is the last thing we wanted. I think Id rather be kicked in the crotch with a lead boot. I dont think Mom and Sarah would use that same illustration, but Im confident they really, really dont want to re-do this day again. Especially Mom, obviously. We finally got out of there around 4:30.

Mom was the ultimate trooper. She was more anxious 2 -3 days ago about the deal than she was yesterday. I know the drugs took the edge off once it got going, but even before that, she was amazingly strong. I was so proud of her. The only thing she complained about the whole day was that her butt bone hurt. Laying down flat on those hard surfaces during the MRI and Gamma Knife made her bottom sore. She doesnt have much padding back there anymore. As always, the nurses and staff fell in love with her. It is easy to do.

Like Shan mentioned, Jenn is in full fledged "plan a trip" mode, right now. They hope to get Mom out again and take her somewhere fun. Get with them if you have any inside info on good places to go.

God Bless,

Boogie

Gamma Knife Round 1 finished

Just a quick update -- Boogie will post a blog tomorrow with more details. Anyhow, the MRI up in Lexington revealed 4 more small tumors. The gamma knife zapped 5 of them but could not reach the last one. Mom has to go back up on the 23rd and get that one zapped too. It makes me sad that she has to go through it all again, but whatever it takes. Mom sounded great on the phone (alot better from the past couple days) but also sarah told me she has been on Perkaset all day too. I am planning on goingup there on Monday.....I can't be away from her too long now. Also, mom has been feeling so down and Jenn and I think we are going to wisk her away to the beach for a girls only weekend at the end of July. We are inviting all her girlfriends (Jan, Judy, Barb, Elaine, and the girls from work) and of course anyone else I have forgotten. Mom thought it was a great idea and we think she needs to get away from that "cancer" room. We dont' know where we are going yet and are still looking for ideas and hotels....if anyone has a place open the last weekend of July or knows of someone that does email me.

Thanks for all your prayers--
Shannon
gsduff@comcast.net

Quick Update/Gamma Knife Tomorrow

Sorry we haven't updated lately. Nothing much going on. Mom hasn't been feeling all too well lately even though she did go out with Sarah one night last week for apps/drinks. Then I think the next night she went out with Sarah, Jenn, Boog and Steph to On THe Border for guacamole and margaritas--moms favorite! Mom got tapped yesterday and they got out just under 3 liters. The radiologists have said they can't really find a big pockets to drain all the fluid out so she has been coming out still looking "filled". She feels relief though. Also, mom has been swelling. Her legs have swollen and are tender to the touch. Does anyone know why this is happening. we are confused. I think mom is really getting sick of talking about cancer all the time and everyone calling to see how she is doing. She was really short with me on the phone on Sunday and very aggrevated. I can't blame her. Mom is also pretty nervous about tomorrow-- so please pray for her in that area. Either Boog or I will update tomorrow after everything is finished.

Love to all -- keep praying for mom,

Shannon