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Monday, June 30, 2008

One Left To Go

Mom has just 1 more radiation treatment left. I can't believe it's almost over. Mom wants to celebrate with a pedicure tomorrow. Now, if that's not a sign things are looking up, I don't know what is!

Cancer, A Fight on all Sides

Since being home, Mom is still in alot of pain primarily from the radiation treatments. Now, starting the 4th week after chemo, I think most of those side effects are gone. She has 2 radiation hits to go and is on schedule for Tuesday being the last and final nuke.

Up until the last few nights in the hospital, Mom could slip in and out of sleep no matter who or what was going on in the room. But as she started feeling better, sleeping became a problem. She thought that she'd sleep better without someone staying with her. So, Thursday night I left her completely alone for the first time. The next morning, she hadn't slept.

Then, she thought it was maybe the nurses coming in and out of the room at all hours of the night. She jokes that they would come in for a zillion reasons including to wake her up to see if she's sleeping. She was so convinced that just getting home and in her bed would help that she started taking matters into her own hands.

One of the doctors on Thursday said that he'd let her go home if not for the fever. The infectious disease specialist (a really cool doctor from South Africa) looked Mom over and concluded that the persisting fever was just her body trying to recover from the on-going radiation. But the other doctor was not convinced.

So, when the nurses came in at regular intervals to check vitals (blood pressure, pulse, and temperature), Mom would sneak a ice cold drink of water just before the nurse stuck the thermometer in her mouth. Her temperature dropped from 100+ to 95 and below. We all got a good laugh until Mom's friend "from a galaxy far, far away" jerked us back to reality and what's best for Mom.

Friday afternoon, Mom got her walking papers. But after a weekend at home away from the nurses, she's still not sleeping. Now, she thinks it's just the frequent trips to the bathroom. In the past 3 weeks, she's not slept more than 3 hours at a time. Many nights, she was up every 20 to 30 minutes running for the bathroom. How can she recover without uninterrupted, sound sleep?

Also, her anxiety has been through the roof since she's been home. She says she's really overwhelmed. Not only has she stepped down from the shots of pain meds in the hospital to her prescription at home, but she's trying to ween the dosage down, way down.

This morning, Dad called me around 10ish to tell me that she had a bad night and was really upset. I raced over, grabbed her meds, and brought her to my house. I helped her take a shower. I have a hand held shower nozzle similar to what they had in the hospital. Mom said that the shower at the hospital was the best 20 minutes of the day. I got her into my bed, applied all ointments, and then went to check out her medicine log. I had her take needed meds and talked with her about how important staying on top of her meds for pain/anxiety management was. She agreed.

Anxiety is at an all-time high at home. At times, Dad feels like he can't do anything to help her which hurts him really bad. I think he wants desperately to get back to life before cancer but to some degree knows that it's out of reach. Mom is discouraged. When she feels somewhat better, she thinks that it's going to keep getting better and better. So when she hits a dip and goes back to feeling crumby and in lots of pain, she emotionally/mentally takes a huge dive. I'm confident that she's getting better and better, but when I try to encourage her, it doesn't usually help. If you hurt, feel bad, and haven't slept, I guess someone telling you your better isn't believable.

I'm hoping that the physical pain and suffering will draw to a close over the next several weeks and that total healing will follow. It's looking as though the struggle will shift from mainly physical to mental/emotional.

Yesterday, right before company was to arrive, Mom's anxiety skyrocketed. I kept trying to get Mom back to the bed and calmed down with an anxiety pill. Dad said that she had no reason to get all upset. Her fragile mental/emotional state is sometimes hard to understand.

I found a thread on the Colon Club Forum and believe it'll help to grasp how she feels. Again, she still has very intense pain from the radiation and I don't want to discount that in any way, shape, or form. I'm just trying to shed light on reasons for her fears and anxiety and that this information will help us to help her. The following are comments to a post from someone who doesn't feel her family and friends understand her fear and anxiety.

by justsing on Sat Jun 28, 2008 6:19 pm
My problem with people "getting it" is that I want to have it both ways. I want to go on with my life as normally as possible and not have to deal with the constant "so how are you doing, REALLY?" conversations. And at the same time, I want people to understand that in spite of my can-do attitude, I'm going through life with an enormous emotional Albatross around my neck. But if I don't talk about it, I can't expect everyone to "get it." And if I do talk about it, I spend a lot of time in an emotional swamp. It's a quandary!!!!!The most important thing for me is that I have one or two friends with whom I can fall apart -- BRIEFLY -- and then be allowed to immediately return to normal without having to "process" anything. They never press me to "share" but are there when I need them. They are worth their weight in gold.

Re: Why does no one Understand ?
by mnw28 on Sat Jun 28, 2008 6:49 pm
I completely understand. I find myself questioning my sanity because one day I'm aggrivated because people keep asking me "how are you feeling" but don't seem to really want to know the answer or they don't ask at all..which irritates me just as much depending on the situation. No win situation. I keep telling myself that people who haven't gone through it don't know what to say and the fact that they care enough to be concerned should be enough. But some days I just want to scream! For some reason I am bothered the most when people say "Well you look GREAT." I don't know why that bothers me so much but it does. I think my closest friends understand that I will talk about it when I want and they will be there to listen. They call and check on me, but if I don't return their call they understand. No one however, except cancer survivors understand the fear that keeps us up at night. I think we all know how quickly those morbid thoughts can enter our minds. Today is one of those days for me. I'm just really very depressed, sad, and discouraged. It seems like during each round of chemo, by Saturday (I start on wednesdays) I'm just really down in the dumps. I usually spend an hour crying to my mom on the phone and then somehow I wake up on Sunday feeling a little better and emotionally stable. Weekends can be so long when you feel so bad. I swear it feels like the minutes are going in reverse. It sucks being young with cancer. I feel so left out and so alone sometimes.

Re: Why does no one Understand ?
by Molly on Sun Jun 29, 2008 8:54 am
Until someone has stood on the edge and almost fallen, they will never truly understand what it's like to have a life threatening illness. Survivorship is a wonderful thing...but can also very scary.

To check out the original post and other comments, here's the link:

Why does no one Understand ?
by Culinarycfo on Fri Jun 27, 2008 11:08 pm

Sunday, June 29, 2008

The Gift

Thursday night, I came home from the hospital per Mom’s request, totally spent, tired, and in every way gave out. I said goodbye to hubby and kids earlier that day, as they left for Colorado to see great grandparents. I’ve gone out of town with the kids before and left hubby home, but I don’t think that I’ve ever been the one left home.

When I made it home, I marched straight to the tub, nothing sounded better than a long, hot soak. With wrinkled fingers and toes, I put on my favorite pjs and gathered dirty clothes to take to the laundry room. When I opened the door to drop clothes in the laundry basket, I found it completely empty. There was not 1 sock, towel or anything. I stood there for a while just staring. I then looked over to the folding table for stacks of clothes to put away, there was nothing. I proceeded to the sink, there were no dirty dishes not even a fork or spoon, looked in the dishwasher, it was empty.

As I went from room to room, I slowly began to realize the incredible gift my husband gave me. I walked outside and stood in our perfectly kept yard. I saw beautiful plants and flowers blooming in the flower bed. In the backyard, the pool was impeccable with crystal clear water. As I came back inside, sat on our bed and covered up with the beautiful new comforter he bought last week, I saw pictures of Baby Girl and Little Man on my nightstand. What picture perfect happy children they are!

Just a few weeks ago (seem like months), my husband let me pass off my responsibilities as wife and mother to turn, take Mom’s hand, and walk with her through the treatment of this ugly disease called cancer. As I described before, he kept the house and yard in perfect condition but also voluntarily took on double duty with the kids. I know that at times I’m a control freak, but until now I had no clue just how overbearing I am. I honestly believed that no one could love and take care of our children like me. So I never gave anyone, not even him, a chance. With me gone, you wouldn’t believe the amazing bond that has formed between he and the kids.

When Baby Girl was at Grandma’s, Daddy and Little Man had marathon movie nights and fierce video game battles. They went on long rides together on the Razor (looks like a sporty golf cart, drives like a 4-wheeler). Little Man said that he saw a hawk, turtle, cow, and deer on their drives. Daddy took both kids plus 1 (Little Man’s Best Friend) to several movies and played in the pool both day and night. In his care, they didn’t even get one sunburn, starve, or lack for anything. While Baby Girl was at neighbor friend’s house (one of the fabulous Who Ha Sisters), Who Ha Sis asked Baby Girl if Mom had sewed the flag patch on her skirt? Baby Girl responded, “No, Daddy did. Daddy can fix anything!”

He took care of the house, was there for the kids, but also for me in a moment’s notice. When I called one rainy morning for him to help Dad and I take Mom to the doctor at one of her sickest points, he was there. When I called him from the ER because the doctors could not get one of the medicines to control the spasms, my husband dropped everything, ran to Mom’s house, and was at the hospital in minutes with the needed medicine. Late Sunday night before Mom started feeling better, I texted my husband, “ Mom needs flowers, big arrangement. Will u please order and have delivered tomorrow.” He responded within minutes, “I’ll take care of it. Love you.” He was at the hospital with the most beautiful, big flower arrangement in different shades of purple (her favorite color) first thing Monday morning.

The Who Ha Sisters relieved me so that I could go home, shower, grab a few minutes shut eye, and maybe see my kids and husband. It’s something to be so totally spent that you just don’t have anything left for your family. He not once complained only offered support saying, “You can do this.” And when the kids would get upset because I had to leave, he would give me a knowing look, distract them, so I could make my getaway. Not all my requests did he understand but was there just the same.

He’s such an incredible husband and this gift he’s given me is priceless. I can’t put into words the need I had to walk through this with Mom but it felt as crucial as my next breath. He saw and understood my need and made the way so I could make the journey with Mom.

Thank you love, for this precious gift, I will treasure it and you forever!

Saturday, June 28, 2008

Mom 's Home

We said our goodbyes, bid farewell, and left the hospital yesterday around noon. I'll share more details of the past couple of days later :)

Thursday, June 26, 2008

Going Home Postponed

Not all the doctors agreed on Mom going home quite yet. While the pain is there, there's a world of difference in today from last Friday when she was admitted. The one doctor is still concerned b/c the low grade fever. Although Mom is disappointed, I told her the pain meds here are much better than at home so staying is not all bad.

We just finished lunch, we both stuffed ourselves silly. Hospital food is strange. It is either really, really good or really, really bad. There's no in between. Right now, Mom is in bed putting on the make-up given to her by the American Cancer Society's Look Good, Feel Better Program.

What a difference 1 week makes! Watch out, Mom's back!

3 More To Go

The little things make the biggest difference.

This morning after shift change around 7:00am, we told the new nurse (friendly nurse is off today) that mom would need a bath before going to radiation this morning. She said that she would send the technician in first thing.

The gynecologist the other day prescribed some ointment for the burns. We have to make sure the ointment is totally off before radiation or else it will act as a tanning oil and burn her more severe if that's possible. We use the ointment during the day but do not apply any 8 hrs prior to radiation and of course make sure she has the bath.

At 9am, we are still waiting for the technician to come. The mornings before radiation are terribly stressful for Mom. So, she was in bed, lights dim, and music (Alan Jackson's Christian CD - all old hymns) playing softly in the background when the transport guy shows to take Mom to radiation.

Mom gets all upset thinking she's going to have to rush through the bath (one thing she enjoys) to be taken to radiation. I took them into the hall and said that they will have to reschedule. She must have a bath beforehand and we will not be rushed. I left them to work it out as I came back in the room to assure Mom that everything's okay.

The tech finally came to give her a bath. There are some people that I immediately trust and pass the baton to letting them do their job but others I immediately don't trust and keep control. Mom enjoyed her bath, was lotioned up, brushed teeth, a new gown, and shot of atavin when the transport showed back up to take her to radiation. As she sat in the wheelchair waiting for the guy to get Mom's chart from the nurses station, Alan Jackson was singing "He touched me."

Mom has temporarily lost control over so many everyday things in her life that when things like this morning happens, it pushes her closer to complete chaos.

Three more radiation treatments to go, home stretch!

Hopefully Heading Home

Mom's oncologist came by at regular time, 6 am. Mom asked if she can go home today, he said I don't see why not. He said that she's got his okay so if other docs agree, she'll go home. Yipee!

Wednesday, June 25, 2008

The Final Four

Monday morning was really tough. Mom was so tired of hurting, totally exhausted and discouraged. She was angry and fed-up. Before Monday, she was pretty much checked out due to the pain medication. This weekend she kept asking why she was in OKC. She's been in another world for the last week maybe longer which was hard because I really missed her.



On Monday, she was coherent but in the darkest place that I'd seen yet with no spark of hope. The doctor came in at 6:00am, we'd been up for almost an hour. Anxiety and pain levels were high. The doctor told Mom that all the blood, urine, and stool tests were coming back good, no infection. However, blood taken from the PICC line on Sunday showed an infection so he ordered the PICC to be taken out. Since last Wednesday, her fever continued to fluctuate between 100 - 103.


After the doctor left, I tried to encourage Mom by telling her that the doctor is not finding any serious complications. There is unbelievable pain, suffering, and anxiety from the treatment and it hurts, really bad but it's not terminal. My intention was to give her hope but instead she took it as I was discounting her pain.





We just sat on the bed both in tears (first time I allowed myself to cry in front of her). She did not want me to comfort her so I stepped into the hallway. After a weekend full of not so good nurses and technicians, a wonderful nurse offered me a Kleenex. She has been Mom's nurse all this week. You can tell when someone gets it and when they don't, she not only gets it but connected with Mom and I from the get go.



Although I did not realize it, a change was occurring. Cancer is a very real physical battle but maybe even more a mental/spiritual one. Mom said that morning that maybe going to see Nana wouldn't be so bad (her mom who died of cancer in her early 50's). A week ago Sunday, Mom had a really bad night, the worse pain I had ever seen or even imagined. Driving in the storm at 5am to get something the nurse said might help, I cried realizing what it means to love someone so much that you'd let them go so that the pain would stop. I told myself not to put that in writing, it sounds so bad.



Little by little things started happening showing me that God had not forsaken us like it felt. He showed up at first in little ways; wonderful nurse offering me tissue in the hallway and Mom pain meds on the fly, the Hispanic technician who told Mom in broken English, "I take care of you" as she ministered to Mom through a bath and massage, physical therapists that made us laugh (one pt that said she doesn't usually ask, but could she pray with us), the kind custodian that told Mom it's job security when she apologized for the accidents on way to the bathroom, sincere, caring doctors working to take care of Mom, and of course the Ya Ya Sisterhood that has not only bonded together together now but for life.

Monday afternoon, a friend (as Mom put it from a galaxy far, far away) happened to hear Mom was sick. She did not have Mom's phone number so she just started calling hospitals in the city. After a few misses, she hit the right hospital and the room's phone was ringing. I answered and within minutes she was praying with me and then I held the phone to Mom's ear and she prayed with her. Mom went to radiation late that afternoon where we met with the radiologist. I asked her to examine mom b/c there was like a knot in the fold of her woo ha (as Ginger aka Nurse Melissa calls it) The radiologist said that it's where the skin has peeled leaving raw skin that oozes blood and fluids that are sticky. The moist fold stuck together and then cemented when dried. She gave me ky jelly and told me to gently work at separating the folds when pain medicine has her at the highest point. Basically, it would tear apart ripping top layer. It really hurts Mom and I feel needlessly. Someone should have not only told us but shown us how to keep this from happening. It is very preventable if someone knows what to do.

Tuesday morning, Mom woke up feeling better but then went to the bathroom and realized she couldn't pee. I looked her over and found another area stuck together just like the fold had been the day before. She began to have extreme pain about the time the doctor arrived for his rounds at 6am. I showed him what I had found and he immediately called a gynecologist. About this same time, mom's iv vein collapsed or rolled so they had to shut off the meds and fluids until they could tap into another vein. Wonderful nurse stuck Mom twice with no luck hitting a vein, second nurse gave 2 stabs, still no luck. Mom's pain is increasing as pain meds are wearing off and the urge to pee is becoming stronger by the minute. She can't get more pain meds b/c iv line is not open.

I called Mom's friend who called the night before, briefly explained Mom's immediate need, and she began praying that God would bring the right doctor and nurses who will have the wisdom to know exactly what to do to take care of Mom. As soon as we hung up the phone, she started calling others to pray and the gynecologist walked into the room. Wonderful nurse said after the fact that she saw this doctor walking down the hallway. She hadn't seen this doctor on their floor in a long time. She asked him what patient he was going to see hoping it was Mom. Sure enough, he walked into the room and quickly proceeded to help Mom. He told Mom that the nurse could bring a shot of morphine as he gobbed ky on his glove. She told him to go ahead without pain meds, she braced as he ripped her open experiencing the highest level of pain to date. He told me what to do to keep her open. Again, if told beforehand, it could have been prevented. ggrrrr Immediately following, a friendly nurse that I had seen several times in the hallway, came to try and find a vein for the iv. She got it on her first attempt.

After today's radiation, I asked mom how she was doing. She just said 4 more left. Pain is getting more and more intense with every hit so she's just trying to focus on the countdown. She'll go tomorrow, Friday, Monday and Tuesday for radiation. Tuesday will be the last day, 33 radiation treatments completed. Please pray that the radiation will totally destroy the tumor but the other areas will be protected so that healing can start sooner rather than later.

On a sweet note: Monday night I went home to take a shower. Little Man was by my side from the moment I hit the door. He sat on the toilet talking while I took a shower and got ready to go back to the hospital. I asked him if he'd pray at bedtime that Nana would continue to get better and that I'd have the energy to take care of her. He looked up at me and said, "Well, I can pray Now." So we dropped to our knees and prayed for strength and healing. On Tuesday night, the kids were swimming and Ginger said she'd get in the pool if they'd stop all the splashing and carrying on because she has a fear of the water. Little Man said, "That's okay, we just have to encourage each other like Mom's encouraging Nana." He's such a sweet, sensitive soul!

On a funny note: A recreational therapist came on Tuesday. She wants Mom to play cards and dominoes. Mom told her that she typically liked playing but that the pain meds leave her unable to focus and the burns unable to sit. This therapist like all the others had a list of questions she had to ask. Mom was pretty high on drugs during the inquisition. She asked how long she'd been married. Mom said 200 years. She asked if Mom could do anything, what would it be? Mom said, "Dolly Parton's make-up." It was like a comedy routine. We were all cracking up - She was the one who prayed for Mom.

Even funnier note: Tuesday night, the Texas Psychiatrist stayed with Mom. I went home to sleep with hubby. Sometime in the night, he got up to go to the bathroom. He said I got up following him and was going between the bathroom and bedroom saying, "I can't find the squirt bottle."

Monday Evening

One of the sisters from the Ya Ya Sisterhood; Monday evening.


If I could talk to you now. Things I would say to you.

Your mom is funny. She called me Melissa. When Cathy called the conversation went like this
Cathy – Is Michelle there?
Mom – No
Cathy – Is Bob there?
Mom – No
Cathy – Is Ginger there?
Mom – No
Cathy – Well who is there?
Mom – Melissa
Cathy – Well is someone there that is not taking drugs?

I got the phone. Cathy talked a few minutes. I love this woman and I don’t even know her. She is so funny cant wait till girls day out with her…..

She ask that I call her back and I told her I would what time is to late she said she was just driving back from Muskogee and was going home to dye her hair. I told Mom that Cathy was going to color her hair what color does she want it. Mom said will it wash out? I said yeah so she said “well its almost 4th of July – what about red, white and blue” So I told Cathy. Also, Cathy ask if you were coming back tonight I said “yeah but, she didn’t even get out of her til 6:30 cause you showing me how to do the ky. I was trying to explain it to Cathy and I said the only way I know how to say it is just to say it. The lip got stuck to the skin and you have to kind of try to wedge between the lip and skin with ky. Cathy thought I was talking about your lips on your face. Not even your moms. I wanted to laugh so hard.


If she is home and comes to the 4th (MOM) I am going to try to find some red/white/blue wig for all us girls (sam, you, me, cathy) to come out in. Wouldn’t that be funny?

Your mom is always worried about everyone else but herself. She always ask little things to me. Like last time it was how did I meet my husband? Tonight she ask me what I liked most about being a mom? I said that my kids think I am perfect. Even though I am far from it and eventually they will realize that I am not. Then I said really the love I get from my kids is unbelievable. I ask her the same questions. She said grandkids!

Your guys are so lucky to have a loving family. Brian and I were not raised in a huggy kissy family. I know Brian was hurt yesterday. We have been in our house for almost 5 months (can you believe it). His dad came for the first time yesterday for about 45 minutes. I had invited Charles over because Brian’s dad used to be Charles boss. Charles might have stayed 15 minutes. He talked to Charles more in that 15 minutes than he did Brian the whole time he was there. He never once said our home was nice, pretty, ugly nothing. He told Brian when he was giving him the tour that its big. Nothing else. Then we walk out in the yard for them to leave and he says which one is Charles house

Brian told him and he said that Charles house was really nice he had a beautiful yard and everything. Not that Brian or I am jealous. I just know it hurts Brian to know his dad cant be proud of him.

I think I am losing my mind I cant believe I wrote that check wrong. I will never hear the end

Its 9:00 and your mom is snoring…….. I am getting madder by the minute your mom has ran fever since 6:50 (right before shift change) they still as of 9:10 havn’t given her anything. I have ask and ask and ask. At least 5 times. Now she wants something for pain so I have ask for the last hour and still nothing. I have even talked to the nurse to her face and she wrote it on her hand. What good is that doing its not doing nothing for the pain.

I did also ask your mom tonight while putting medicine on her woo-ha what trip is she going to take when this is all over. Did she have one planed. She said no not really but it will be somewhere in Puerta Vallarta.

Tuesday, June 24, 2008

Stay Tuned

Stay tuned, for upcoming praise report

God brought Mom the best doctor and wrapped His arms around her as this doctor broke Mom open. We are listening to "How Great is Our God" as Mom rests before radiation. I'll share later.

Monday, June 23, 2008

Manicures, Massages, and Margaritas

Mom's been in hospital since Friday. Safety net feels good. Think everything is going well. She's continued to run fever of 100 to 102. Blood Pressure 105/46 at 5:00 today (normal is 120/80), pulse rate tonight is 110(normal is 78). Nurse says elevated pulse rate is from pain and anxiety. Not sure about low blood pressure, dehydration is not a problem b/c she's getting fluid from IV regularly. She's had 4 units blood (think red blood cells, hemoglobin) on Saturday. Urine specimens and blood tests have all come back clean until today. They are taking blood from PICC and blood straight from arm. Blood from PICC showed infection (Gram and Cocci in clusters) not sure what that means but nurse wrote it down for me. They gave her antibotic shot called vancomycin for that. they are giving other antibiotics; Alvelox, Mystatin and Flogyl. She had a phosphorus drip in IV earlier today b/c low electrolytes. Tonight, nurse gave her MS contin- extended morphine, dildaudid (more pain stuff) and an ambian to sleep. Amazing friends are helping, I'm calmer, and mom's in good hands as she gets better.

Speaking of amazing friends, Mom's friend stayed with Mom all day Saturday and Sunday. I instantly loved her; she's a psychiatrist, has a great accent and is from Texas (enough said). She brings peaceful calm into the hospital room and gently reminds Mom (and me) that God is healing Mom's body, that He loves us and is leading us through to the other side. She gets Mom talking and remembering life before Cancer which is so important. This whole thing is so consuming that we've lost sight of life before or after this horrible, disgusting disease.

I know that tomorrow afternoon, I'll need a shower and break. I reached out through a text message to my friend who has already done so much for more help.

She responded back with this; I'll be there as soon as I get off work. No problem, it's a honor and a blessing that you and God trust me enough! I am truly humble to get to have you and all your family in our lives. Don't be afraid to ask me for anything, that's what friends are for. When make it to the other side, Mom and all us girls on Mom's team must have a day of beauty, massages, pedicures, The Works!

I responded; N tears, thank u. You all are unbelievably amazing. I angrily told God that nothing good is in this. I'm wrong, amazing friends are shining through all the crap, literal crap! u r all beautiful. Cheers to manicures, massages, and margaritas n near future.

Funny moment: When Mom's good friend was here taking care of her, Mom was dreaming and mumbled something about being in Jamaica. Big jump from dreams about McDonald's last week. Also while heavily medicated this morning around 2:30, Mom asked "what kind of place is this." I answered, "a hospital." She said, "Well get me my glasses and their book so I can see what services they have to offer." (she's ready for spa services too)

Off the subject; Baby Girl said "Mom put your hand right here, can you feel my heart beeping?" Saturday night, friends little girl said, "Look, there's a lightening bug in your pocket." My pocket was lighting up each second. I just about came out of my shorts right there in front of everyone, then realized it was just my cell phone. My anxiety over bugs is really out of control.

Saturday, June 21, 2008

In Hospital

She was admitted to the hospital yesterday morning. Basically, we went to the treatment center yesterday morning to get PICC line flushed, weekly thing. On the other side of the treatment room away from mom, I had a break down moment saying the upcoming weekend scares me to death, it's like the night 3 times over, you just feel all alone. Mom's' fever was 102.6 and they were ready to send us on our way. I said that I wanted a doctor to check her over and tell me she's okay, and then I would take her to radiation and then home. I just couldn't handle the responsibility of something happening that I failed to notice type thing. Anyway, mom's onc nurse came over obviously annoyed and said that mom would be seen by one of the other doctors. That doctor's nurse (really nice, I might add) came helped us to the room and took down a bunch of information. She really listened to us, it was nice for a change. The new onc doctor came in (again, really nice, like a fresh start b/c I've wore out my welcome with others) checked Mom over and again took the time to listen to us. She gently recommended admitting her to the hospital. Mom's hemoglobin was 8.6. She said that a blood transfusion happens at 8.0. Anyway, she made the arrangements so Mom would not have to wait, that she would be admitted through ER, and go straight back an they'll give her pain med immediatley. In the ER after they gave her pain med and her eyes were slapping shut, I told Mom it was okay to go to sleep, and she said that she was too scared to sleep that she might not wake up. totally heartbreaking. It was a long day full of tests and what not. She got in a room around 1:00. The doctor on that floor came in and said so far everything's checking out okay. That urine looks good, x-ray (not sure what machine took pics) but looks good, etc.. She said that some blood work takes 24 hours so they'll wait and see how it comes back, but so far everything looks fine all things considered. Dad said let's leave her here and let them take care of her and go home and sleep. She's still going to the bathroom every 20 minutes peeing b/c the fluids they're giving her and diarrhea all the while very heavily medicated and dragging an iv pole. He says that I've got to get some sleep, which I know but there's no other option. Leaving her in the hospital by herself is not an option. When you call for a nurse, it takes 10 to 20 minutes and mom can't wait that long and she needs someone familiar there 24/7. While I know that he's concerned about me, I was mad with that suggestion to say the least. I called my friend (who I'd trust with my life) came up and stayed with mom through the night. I went to Mom's house and gathered things I thought she might want along with a bouquet of flowers, and my husband volunteered to take them back to her if I'd go straight home and go to bed. My new neighbor and friend who came last weekend to help me clean mom's bathroom, went to the hospital this morning to relieve other friend and she'll stay until 12:00. Mom's friend is going to stay 12:00 to 8:00. Thank God for friends. I slept last night and am about to get ready, pick up a few more things for mom, and go up there for a while.

Just got a call from friend and she said doc came in and said they Mom will need some red blood cells, not sure if that's a blood transfusion or what. Also, they were scared about the PICC line because Mom told them it's been in since March 9. I told friend that it's been in since May 9th and that we've had it flushed every week at treatment center and have had no problems with it. They were freak'in out b/c PICC lines can only be in for 3 months. I told friend to call me if doc/nurses have questions, because Mom can't answer them b/c the drugs. Doc says everything else is okay.

Everyone, please keep praying. I know that God is getting us through this and that your prayers are making a difference. Anyone who is close to us and wants to help, please let me know. I realize now that this job is bigger than me. Mom deserves the best care possible and me half dead from no sleep is not the best for her.


Oh, something funny. Yesterday mom said that this place (hospital) scares her. Every other time she's been there, she's left with a baby.

The other night at home, I was laying in bed with Mom. She was passed out from the drugs and mumbled something. I asked what she had said. She said, "Oh, I don't know. I was just dreaming that I worked at McDonald's and was making a sausage/egg mcmuffin." We both laughed. I said that we'd need to discuss new pain meds with doc, that dreaming about McDonald's was unacceptable. Dreams she be of nothing less than beaches in Puerta Vallarta and such.

Thursday, June 19, 2008

Prayer Request

Mom is swelling really bad. It's making it so incredibly painful to walk, sit, or anything. Radiation again tomorrow, please pray for decrease in swelling.

Blessed Sleep

Just want everyone to know that last night was better. Since at least last Saturday night, as you've read, nights are bad. She's up every 20 to 30 minutes going to the bathroom with terrible pain and anxiety which seemed to build to out of control proportions as the night drug on. It left her totally exhausted and discouraged by morning. I don't think the symptoms are necessarily worse at night than during the day, it's just more frustrating for mom at night because she wants to sleep.

Yesterday, the radiologist prescribed some butt foam to relieve the pain (she nonchalantly said as she wrote the prescription, I don't know why I didn't think of it before. It would not have even occurred to her then if I hadn't been so insistent, what's wrong with these docs)

Anyway, the combination of butt foam and increased dosage of pain meds worked, and she slept for longer stretches of time, 2 to 3 hours at a time, YES!!!!!!!!!!! When she woke up she said that last night was so much better, YES, YES, YES!!!!!!!!!!!!!!!! :)

Okay, so this was last night;
6:00pm - Anxiety pill - it also helps with sleep
7:00 pm - 2 pain pills - after an hour when med is in full force, we conquer the bathtub
8:00 - Butt Cream
9:00 - 11:35 - slept soundly zzzzzzzzzzzzzz
11:40 pm - Woke Mom for 2 Tylenol for temp 102.7, 2 pain meds and back to sleep
1:10 am - temp coming down - 101.46 and bathroom trips, pain, and anxiety increasing as nights before
1:45 am - Butt Foam
2:30 - Tramadol (for Inflammation), Lorazapam (for anxiety)
3:00 am - 2 Pain Pills
3:00 - 6:30 - Blessed Uninterrupted Sleep ZZZZZZZZZZZZZZZZZZZZZZZZ
6:30am -2 Tylenol - temp 100.3 and falling
6:30 am - 2 pain pills
6:30 - 8:00 - And More Sleep zzzzzzzzzZZZZZZZZZZZZZZ
8:00 - She conquered the tub - getting clean for radiation
9:00 - She ate toast (she has not eaten solid food since Sunday morning only clear liquids)
9:00 - Levaquinn - Antibiotic for infection
9:00 - Flucanazole - Antibiotic for thrush (yeast in mouth)
9:00 - Lorazapam - Anxiety (to help handle today's radiation at 10:30)
9:00 - Tramadol (Inflammation)
9:00 - Prilosec - (Heart Burn which is a major problem)
9:15 - I had a shower, YIPEEEE - Mom says that as a patient she deserves a hygiene conscience caregiver - I guess 3 days without is long enough, I told her if she gets lucky I might even brush my teeth, but that's all no shaving, make-up, styled hair, etc....that's where I draw the line.

9:30 - off to radiation
9:45 - 2 more pain pills

Bottom line, there were no out of control moments, pain was managed throughout the night and we slept much better. She woke up so encouraged, what a great feeling!

I want to describe today's radiation treatment (Boost has arrived) and talk a little about the cool valet guy and soccer mom but I need to go check on her and the medicine schedule.

check back later :)

Wednesday, June 18, 2008

Spasms

I really think she is having spasms and not constipation. If she were blocked, I would think she would constantly hurt until the blockage was released, especially continual stomach pain. Her pain and feeling of needing to go comes in waves. She has diarhea each and every time she goes to the toilet at least 30 to 40 plus times a day. When it climaxes usually in the last hour before she can recieve her next dose of oxycodone, her pain goes off the charts. She either starts shaking uncontrollably and if someone isn't in the room, yells for help or she loses her head and starts racing around the house out of her head not being rational. At this point she starts hunting the pill bottles for something more to take to make her go to the bathroom. When we got to radiation, I didn't think she'd meet with the radiologist so I asked the front desk if I could possibly ask her a quick question. They said to flag down the nurse (the one we don't like) and ask her to speak with the doc. Anyway, the radiologist appeared before the nurse. Weird, I don't know whether to say something or wait so not to cause a rift for not following the chain of command. I asked her if I could have a couple of minutes, she obliged. She listened to me describe the pain, my thoughts on what's going on, and the information I received from Joy on-line about the spasms. I was very calm (more like half dead from desperation and lack of sleep) as I explained. She looked agitated and said take her to the ER. I think she thinks I'm just too high maintanance and is ready to pass us along. I asked her if we could try Clonazapam like Joy used for spasms. She said they don't prescribe that for radiation patients. She didn't say you're on a wild goose chase or yes spasms could be the culprit. She's just ready to wash her hands of us. At that point the radiation technician walked mom past us to put her in a room to see the radiologist. If I'd known we were going to meet, I wouldn't have tried to speak to her beforehand. Mom and I waiteed in the examination room for 30 to 40 minutes. She finally came in and said that it sounds like she has something called tenesmus which causes a false sense of needing to go and anal spasms. She said she didn't know why she didn't think of it before. She would prescribe proctofoam to inject into her butt and that it would help combat the spasms. She didn't talk to me unless I directly spoke to her. She didn't say anything about the conversation we had in the hallway, it was like it just dawned on her that maybe it's spasms caused by tenesmus. It's just a completely weird feeling, but she gave mom a hug before we left which I'm grateful. She says boost radiation starts tomorrow and that mom should experience immediate relief. Mom's hanging on those words which scares me b/c Belle has posted her relief did not come for 2 weeks after radiation stopped. 8 more radiation hits.I did call the onc nurse to see if she'd prescribe the clonazapam but she called during the radiation when I have to turn off cell phone due to radiation machines. She did not leave a msg or call back. I'll try her again tomorrow if this other stuff doesn't work. By the way proctofoam is put directly inside her bottom. She can't do it and the first time I really had a hard time finding the hole b/c of the hemmoroids and swelling. (tmi, I'm sorry) I'm scared to call more than absolutely is necessary b/c they are treating me like the boy who called wolf too many times. This afternoon mom woke up with extreme pain, she was shaking uncontrollably and yelled for help. It was 20 minutes until time for next dose of oxycodone. Dad had her swallow one pill and chew the other one up for quicker relief (thanks Bradyr) Dad and I agreed that we'd up the dose without calling the doc to 2 pills every 3 hours instead of trying to wait 4 hrs. I'm just not giving up! Each and every time she takes a dive from whatever, I'll keep trying to find a better way. I just can't accept that nothing can be done. thank you, thank you, thank you.Oh, my friend is giving me numbers to call for in-home help. It's hard to committ to doing that, letting a stranger come. Another friend is checking on a cleaning service. This friend came on Sat. and cleaned the bathroom (so awesome) but with all the accidents, I'm scared we are all walking around in ecoli. I clean it with 409 but I just don't have the energy to do a deep clean which I think it needs. A friend of Mom's says she wants to help and is coming on Saturday. If it works out maybe she'll help on weekends to give dad and I a break.

Bad Nights

This was me reaching out on the colon club last night and Belle (NW Girl), Monique, and WAMO were there. Thank you God for leading me to the Colon Club and for these caring women who got me through tonight.


(Me) Nights seem worse. Diarrhea seems more frequent, not making it to the toliet more, more pain and anxiety. She's taking oxicodone 2 pills every 4 hours. At night, it's not enough. Right now she has almost an hour before next dose and pain level is rapidly increasing. Do I absolutely have to wait 4 hrs? She's straining due to constipation but there's frequent urgent diarrhea. Both are wreaking havoc on her butt. Tonight there's a little blood when she blots. I assume its hemmoroids from straining. She also complains about her bones hurting. She thought she dodged mouth sores this round of chemo, but tonight there popping up. I'm reading on this forum about those at all stages continuing on w/ life, jobs, hobbies. How in the world is that possible? Is mom's side effects normal? Oh and I went to initial mts with all doc and went to chemo class where the msg was not to suffer through but let them know of all side effects and they will find meds to relieve it. In fact the onc head nurse said the disease is tough, you don't have to be. But in the next breath makes it sound like tough it out, it is what it is.

Re: Bad Nights
by NWgirl on Wed Jun 18, 2008 12:11 am
My side effects from radiation were tough, but nothing like what your mother is experiencing. Of course I have a temporary ileostomy, which is a blessing during chemo/radiation as it all comes out in the bag - pain free, regardless of how bad the diahhrea is. As for bones hurting, she's not getting that nulestra (sp?) shot is she? (Yes, she had it last Friday) That causes a lot of people pain in their bones. How many more radiation treatments does she have? Once those things are over with, you can start to begin the count down to when she will start to feel some relief. For me it was about 2 weeks after radiation stopped, but hopefully hers will be quicker.That seems like a lot of oxicodone - I definitely would not increase it unless her doctor says its okay.When I went through radiation, there would have been no way I could have worked (I'm a stay at home Mom). I LIVED in my Lazy-Boy recliner for weeks. I read about people that continue to work as well and I don't know how they do it.I'm so sorry you and your mother are having to go through this. It breaks my heart every time I read your updates. I will continue to pray for you both.

by Monique on Wed Jun 18, 2008 12:28 am
I did not have to undergo radiation, but I found the side effects of chemo sometimes extremely painful. Thus, I am really, really sorry to hear about your Mum's side effects. When I was undergoing treatment my bowels were ravaged: constipation and ongoing diarrhea (sometimes as many as twenty - thirty trips to the bathroom), which resulted in some brutal fissures. I think that my bowel issues were the worst side effect of my treatment (and not to scare others, because certainly not everyone suffers from these things).Frankly, the only thing that seemed to take the edge off the pain was long, epson salt baths and, after a few chemotherapy treatments, knowing what to expect and preparing myself for the side effects. For instance, while experiencing constipation, I would eat prunes or drink prune juice (however, another poster remarked that prunes gave him the trots, so if your Mum is trying them out, I suggest that she only do so in moderation). When I was experiencing relentless diarrhea, I would take Imodium in the morning to nip things in the bud. I also ate a very bland diet (Google "BRAT"). This seemed to help somewhat. Although these things didn't cure the symptoms, they did seem to help a fair bit. I don't know if this will make your Mum feel any better, but I did not, and could not, continue with my hobbies, never mind my job or school. No way. By the way, I have a nurse friend who insists that no one's pain be more than a four out of ten. So, if your Mum is suffering more than a four out of ten, I would suggest you immediately speak to a doctor regarding pain management (as well as a nurse, as they are often even more helpful than the doctors and, in my experience, fantastic advocates). Also, my learned nurse friend said that the best way to treat pain is to treat it early, before it reaches a 4/10, otherwise it can be difficult subdue.Monique

(Me) Re: Bad Nights
by momsCancer on Wed Jun 18, 2008 12:39 am
Belle, I'm so glad you are there, do you not sleep either. I would have had her admitted to hospital last Monday if they would've agreed. I feel like such a downer and a terrible failure at mind over matter, this really seems impossible at times.Monday they told us no solid foods just clear fluids. She's doing miralax laxitive. She can't try to physicaaly move things b/c radiation burns. She hurts terribly when peeing, thought doing it in the tub of water might be an idea but initial hit if water is equally as bad. She just uncontrollbly shakes from pain. Oh, she's had 4 consecutive days off radiation, go back tomorrow, still 9 left.

Re: Bad Nights
by wamo on Wed Jun 18, 2008 2:20 am
I can hear your worry and pain in your message.... take a deep breath and know you are doing all you can to help your mom...My husband had rectal cancer and 6 weeks of radiation everyday M-F.... he tolerated it well until about 3/4 of the way through. He had the excruciating pain, uncontrollable shaking / shuddering from the pain when he tried to go to the bathroom. He also was on oxycodone... and as long as he wasn't driving he could have 2 every two hours... but sometimes that just isn't the right pain med for the pain receptors that are experiencing the pain. I would first ask onc if there was another thing to try... at one point they had him taking Motrin and Oxycodone and that helped a lot when he had a rectal abscess.Now this is really KEY..... SITZ BATH SITZ BATH SITZ BATHSSSSSSSSSSS. No one ever told us this would help despite our reporting in of his horrible pain from treatment. I got on the computer one night and saw a couple of references to do sitz baths to relieve the pain. My husband could have kissed my feet.... he said that was the ONLY thing that helped him. It was still tough and painful but frequent sitz baths helped over all with all of it. Basically, warm water in the tub, no soap... and you only need enough for the water to go just under your bum area... not a full on bath, I'd say 4 inches max water height. He couldn't believe none of the doctors ever mentioned something like this might help and boy did it! So at least try... It sucks, no doubt. And being a caregiver myself, it is the hardest thing in the world to watch someone you love in that much pain. I used to worry about how much pain meds and would he get addicted, etc. One time my pharmacist told me (we have become good friends since I see him so much) that when someone has cancer those concerns become secondary... your priority is to help them through their pain. So don't worry too much ok.Hang in there I know it feels like how can I do this another day sometimes, but you can and you will get through this time.Wamo

(Me) by momsCancer on Wed Jun 18, 2008 3:20 am
Did your husband lose it and say to leave him alone at points. It's 3am, 1 hr before next dose of oxycodone and her pain level is bad and climbing and anxiety through the roof. She wanted me to leave her alone, she was going to lay on towels on kitchen floor. I convinced her to get backin bed but that I'd stay in living rm to give her space. She's out of her head, I can't reach her. She thinks she is blocked and can't get relief. She hasn't had food for 2.5 days. she had enough liquids the past 2 days. Can I give her Lorazapam anxiety pill 2 hrs early.

Re: Bad Nights
by wamo on Wed Jun 18, 2008 4:46 am
Yes he did ask me to give him space in a sense... he couldn't talk for a while after bathroom attempts.... it would come on suddenly too be watery yet took all he had in him just to get it out... infact it was like his body was forcing him to push even though he didn't want to (he also has hemorrhoids). All I can do is relate what happened with us, I am no doctor and certainly don't want to act like I am one. So I have no idea if you should give that anxiety pill early or if that is a really bad thing to do.With our insurance we have a phone number to an advice nurse and if you have that too, I would call the heck out of that thing and let her know your mom's pain meds level and the pain scale rating she is at 1 being no pain and 10 being worst pain you could ever imagine. Let them guide you on all your worries. If you don't have that, perhaps you have a 24 hr number for oncology... there is probably an on-call oncologist always available. You would just call your cancer center and they would either give you a number to an advice nurse or page the oncologist or however they work it. You should not feel that you are alone in this. Make those calls describe everything and they will let you know if yes that is normal or is this happening also or get her to ER now or see oncologist first thing in the am or whatever is appropriate. But bottom line is take the pressures off of you. Your mom knows you are available to her, be close but give her space if that is what she needs to deal with this. We all have our ways of dealing with pain and feelings of desperation. This is cancer.... it is ugly at times. Stay on it enough so you are comfortable in knowing that you have asked all of the right questions and so on...I wish I could do more to help you and your mom. I am sorry for all that you both are going through.WAMO

Re: Bad Nights
(Me) by momsCancer on Wed Jun 18, 2008 4:50 am
Okay, at 4:00 when I brought her the Oxycodon she apologized. I told her it's okay, she has a right to lose it and be upset and angry. I felt her, she was burning up. Took her temp and it was 101.28. Called the nurse on call, gave 2 tylenol and started antibotic that she has if temp goes above 100. She's had pain pills, anxiety pill (20 minutes early). I'm wondering if there's no constipation only the feeling of it b/c she's so messed up inside from the radiation. Burnt, inflammed, swolen and that's what's making her think she's constipated. She hasn't eaten in 2.5 days. She had plenty of fluids the past 2 days. Yesterday with IV and today drank over 2 pints. She hasn't passed hard stool today only diarrhea. She had 2 mirclax ( stool softener) and a couple of suppositories. Anxiety back down (I told her temp was 100), pain pills in effect, back in control Thank you

Re: Bad Nights
(Me) by momsCancer on Wed Jun 18, 2008 4:58 am
Thank you so much for being there. I think we are okay and back in control. I might sound totally losing it when posting but I really try to put game face on for her; calm and never tears. Whle I think I pull it off pretty good, I don't know. It's really hard to know what to do when her anxiety and pain are thru the roof. I try to give her space but at the same time worry that getting in and out of bed on pain med and total exhaustion, she's going to collaspe or something. I just try to be where she can't see me but close enough to know what's going on. I wish I was a nurse and had more exp with all this. I just don't know when it's really serious or not. This thing is really a rollercoaster ride. It helps so much with ya'll there. Thank you, thank you, thank you.

Monday, June 16, 2008

Night of the Living Dead

The last few days have been really bad and last night made really bad look like a walk in the park. I want to update everyone but I've got to keep it short b/c I'm running a little to no sleep. Saturday, Mom was in a lot of pain and last night was the worse yet. Yesterday afternoon, major stomach cramps hit, Mom intensely needed to have a bowel movement and was blocked. It came and went in waves, like spasms and increased in duration into the night. She was able to get some out, it was terribly hard and caused rips and hemmoroids. What's weird is that she obviously is constipated but at the same time has major diahrea. When the urge hit, she had no control and could not make it to the toilet every time. Remember, she gave up underwear weeks ago. She took the hydrocodeine at 5:00 but then did not take any for the rest of the night/morning. I'm the pain pill enforcer. Last night, I thought I really messed up and was the cause of her intense pain and suffering. I couldn't make her take the pain med and as the night wore on, her pain was off the chart. I've never seen someone is so much pain and there was absolutely nothing I could do. The more I tried to help, the more aggrivated she became with me. I just kept trying to help her go between the toilet and then to the tub to clean. In between the waves, she'd lay on the bathroom floor at times furiously praying and then swearing she would not make it through the night. I was in panic mode by 4:00am and called the nurse on call. She said to go get suppository and fleet enema if it didn't help to take her to the emergency room. Dad stayed with Mom and I ran into town in the middle of a thunderstorm to get the stuff. When I got to Walmart, it was pitch black. They had lost power and did not even have the back up generators working. The store was completely dark and the doors were locked. I tried the other 2 drug stores, but they weren't open either. I drove into the city, found a Walgreens and probably an hour later made it back to the house. At this point, she is totally spent, dyhydrated, lathargic, and completely numb by pain. Long story short, my husband drove all of us to the hospital. We went to the radiologist thinking she could possibly expediate the emergency room visit. While she was looking Mom over, Mom felt the urge. I quickly start wheeling her towards the bathroom. We didn't make it. It got all over her clothes, down her legs, pretty much everywhere. Something funny looking back is that the radiologist yelled out to us as we're racing down the hallway do you want Idiot Nurse to help? Mom and I yell back in unison, NO! Anyway, I grabbed hospital gowns from the radiation dressing room and she made a skirt out of it. The radiologist said to go to the oncologist down the road that she couldn't have her admitted to the hospital. The oncologist didn't want to admit her b/c the risk of infection in the hospital. In between runs to the bathroom, Mom got an IV of fluids, 2 things of morophone which still didn't take the pain away if you can imagine, and sent us home. While there her temp was 99.6 and bloodpressure 97/58. By the way, we got a prescription of oxycodone 5mg. She can take 1 to 2 pills every 4 hours. It is awesome, a miracle drug! She's taking a stool softner and suppository. Oh, I hope tonight is better, much better.

Friday, June 13, 2008

My Friend

Hey, ain't it good to know
that you've got a friend
When life can be so cold
it'll hurt you and desert you
It'll take your soul
if you let it
Oh, but don't you let it

Cuz, You just call out my name
And you know wherever I am
I'll come running
to see you again
Winter, Spring, Summer or Fall
All you've got to do is call
And I'll be there, yea yea yea
You've got a friend

I've got a friend and today when I called, she came running!

No More Chemo, Nine Hits of Radiation Left

It was a long night and day for mom. Yesterday, the oncologist nurse (head nurse) called back with a prescription of Tramadol 50 mg. Mom's suppose to take 1 tablet every 6 hours. She said it would help with inflammation and pain. I'm not sure how effective it is b/c we didn't get it until 5:30 last night. She took it and then a few minutes later took a full dose of hydrocodone. I left their house at 9:30 last night thinking she'd be okay through the night. Dad says she was up alot last night hurting.

This morning he thought she was in bed asleep while he was working in the office, when he heard her calling for help in the kitchen. She was doubled over thinking she was going to pass out. She felt really bad this morning, probably about the worse I've seen her, but we took her to radiation this morning anyway. Before leaving, I gave her an anxiety pill, another dose of hydrocodone and nausea medicine.

For most of this week she's not eating or drinking much and is staying in bed either hurting or knocked out for short spells from hydrocodone. I've tried to keep her drinking water especially b/c she had the chemo - Mitomycen-C on Monday and the 5-FU pumping all week until noon today, but she only sipped water here and there.

At the hospital for radiation, first time ever I asked for a wheelchair when we pulled up b/c she's so lightheaded, weak and drugged from the hydrocodone. I tell ya, I really despise the nurse there. She doesn't know anything, but acts like she knows it all. I'd respect her more if she'd just say that she doesn't know but will try to go find out instead of dishing out wrong info left and right.

Today, she brought out a thermometer, mom ran a fever yesterday afternoon and evening at the highest was 99.94. Because she ran a fever and her cell count was so low last chemo round and wasn't as high as the oncologist would have liked at the start of this weeks chemo, he said to routinely check her temp and call in and start taking the antibiotic he had us get, if her temp hit 100. Anyway the nurse attempted to take mom's temp with a digital thermometer. B/c mom had just taken a drink of water, she said she'd take it in her armpit. It wasn't registering. I told her to forget it, we'd have it checked at the clinic after radiation. She said that there's no need to worry unless her temp is 102 or more. 102 temperature for someone on chemo is very serious!

She's the same stupid nurse that told me to get Tucks Medicated pads which totally lit mom up Wed. I might as well had poured straight alcohol on her, it hurt so bad. Also, she told me to get Domeboro soaks to go in her sitz bath. Okay Domeboro is to dry up poison ivy and such rashes, radiation is totally drying mom up down under, so that again was bad info. Although we kinda figured it out on our own, the head nurse at the chemo place told us to immediately stop both.

The stupid radiation nurse was the one yesterday who also said that mom's pain from the radiation burns was like what she experiences from sunburns. She said she gets really bad sunburns. Tell me how I could not think she's a total idiot equating mom's radiation burns to her sunburns. She also brought us a little tiny sample of aquafor and said to use it sparingly b/c a little goes a long way. Mom almost goes through a regular size bottle each day. We slather it on the inside of her legs and front to back at least a 1/4 of an inch thick every time she goes to the bathroom and/or gets a sitz bath (almost every 2 hours) I'm telling ya, she doesn't know anything.

The radiologists are gone until Monday, hope they have a wonderful long weekend, NOT.

Mom was radiated and we left for the chemo clinic.

Back in the treatment room, they checked her blood pressure and it was 87/63. The head nurse took Mom to a room to check her down under. She says that it does look good (like the radiologist said) She said that it no doubt is extremely painful but the skin is still intact and while there's swelling it's still okay. She ordered mom a thing of morphine, they unhooked the chemo pump and gave her a bag of fluids. Oh, and she also had her $4000.00 shot to up her white blood cell count. I'm still in shock that 1 shot can cost $4000.00, that's crazy. The financial secretary said no worries, insurance cover it. Crazy, I tell ya!

By the time we left, mom looked so much better. The morphine and fluids really brought her back to life. They were suppose to take the pic line out today but decided to leave it in just in case she needs another IV of fluids. Head nurse told me to make sure she's getting enough water and to up the hydrocodone to 6 teaspoons rather than 3 every 6 hours. She said to give her doses between 2 - 6 teaspoons during the day according to the pain level and give her exactly 6 teaspoons before bed each night. Mom's been trying to suffer through instead of taking the full dose as needed. I've taken over administering medicine!

I guess the morphine really worked wonders and thank God and the head nurse for it b/c when we got home mom asked me if I thought her burn was better than yesterday b/c it really wasn't hurting. It looks the same, she's just not in crazy pain b/c she's drugged.

This afternoon/evening has been pretty uneventful. Her pain level is way down and she just wants to sleep. She's not wanting to do her sitz baths or still drink enough water b/c she just wants to sleep. It's hard to enforce it b/c she's resting so peacefully.

The head nurse is on-call all day tomorrow, I'm going to call and ask about the Biafine Prescription Cream something suggested on my post on the colon club. I told the head nurse that I'm going to totally rely on her and mom's oncologist for help, not the folks at radiation. We'll try to keep going for radiation but besides that we're done with them. I'm still not giving up on a prescription cream that will numb her burns.

As far as side effects from the chemo, the main one this week has been nausea and today lightheadedness from dehydration. Mom and I were talking yesterday. She's wondering if this round of chemo is better than last. During the first week of chemo last time she was not only nausis and lightheaded but also felt like she had the flu 100 times over. I think the pain is so intense from the burns from radiation, that it's masking the side effects of chemo. You know, kinda like if your thumb hurts, let me stomp on your foot to take your mind off it.

That's where we're at today. I can't tell you what it means to know there's caring people who are there for you and understand the pain mom's in b/c the ones that don't really upset you.

I know I'm being terrible but I've really lost patience with incompetent or just plain uncaring docs, nurses, technicians and such. There's those really great ones out there who make such a difference but nothing can make you snap faster than the others.

The hospital has a valet service for radiation patients. We are greeted by the same valet guy every day and he meets us on some days with smiles and other days with a face of genuine concern and kind words. I can't tell you what he means to us.

Also, I've told you about the really great (cute I might add) radiation technician. He is great at his job, he has a personality and sense of humor to brighten really dark days, and truly is concerned and connects with his patients. All the patients including mom want him each and every day. He told me today that we can ask for him each day which I will (Man, I hope he doesn't tell the other patients that or else everyone will only see him) The heartless technicians who are just doing a job makes mom have anxiety attacks and want to quit that much more. I don't think they understand that their patients are sometimes hanging on by threads and their actions and demeanor really can be devastating blow.

Soccer mom is getting worse. The radiation to her brain tumor has her unable to think straight, has really affected her mental processing. She started radiation the same time mom did and started having side effects when mom did. The first 2 weeks she came in bright and cheerful always grabbing our hands and asking how we are doing. She is such an amazing sweet, giving person. (full of life) The third week when the burns started bothering mom and weird pains shooting in her hips, soccer mom came in off balance and kinda angry but bound and determined not to let the cancer or treatment take her down. Please pray for her and her family!

Mom's chemo neighbor was a really pretty probably 30 something woman. She was dressed to the nines and looked picture perfect healthy. She really was concerned for mom and was so sweet. She asked mom's name and said she'd pray for her. She's been on chemo for 5 years. She has a blood disease, it's terminal. Doesn't it just make you want to march right up to God and demand to know why?

My mom is my life right now. All my energy, effort, thoughts and love go to her and her recovery. What hurts the most and is the hardest to accept, is that many times it's not enough to make it better. I still can't believe this has happened. I was definitely one of those people who didn't have a clue about this disease (so I guess I should have more patience for the clueless)

I'm definitely 100% forever changed.

Wednesday, June 11, 2008

Ready to Rumble with the Radiologist

Mom's in a lot of pain from radiation and the radiologist is wasting our time with stupid over the counter bull crap. Here's my post and some of the comments from the colon club concerning this situation.

Me: Mom's completed 22 of 33 hits of radiation. This weekend the burns have started to become pretty miserable. Now on Wed. it's unbearable. The doc says not to miss any treatments but she won't give her anything to help. She says use aquafor which we've done from the beginning. It coats but doesn't relieve. Now she said to get Tuck's Wipes. We got some to try but why can't she just prescribe something to numb it. Also, the bumps are getting bigger and itching worse. There's got to be something that will help. Makes me so mad!

Response: The cream I used is called Silver Sulfadiazine Cream 400GM. It was prescribed when my genital area started to get raw. I couldn't urinate without excruciating pain - I'm talking on a scale of 1-10 this was a 9. I cried every time I had to go. So I would urinate, then use a non-scented baby wipe to gently pat off any residue, then dry gently with toilet paper, then apply the cream (each and every time I had to go). It did give me a lot of relief from the pain. Not 100% relief, but I could hardly function without it.

Me: Thanks for all the suggestions, She's in so much pain and I'm just flat out mad. A couple of weeks ago when it was sore but not unbearable, I asked the radiologist for the Silver prescription stuff (can't think of the complete name) but I took the name of it to her. Someone suggested it from a previous post. Anyway, she said Mom didn't need it now. She looks better than other patients, and to wait. She also said that she doesn't like prescribing the silver stuff b/c it's hard to get off. If it helps her why not give it to her and and we'll make sure its off for radiation. At the beginning, doc told her that the most important radiation sessions are at the end, that it would get painful but not to quit. She said that it was our job to get mom there and she would do the rest. I'm talking to the doc letting her know mom's pain level and that she's asking Dad and I to let her stay home. I'm taking her everyday but with 11 left, somethings got to give. She's all swollen, itching from the bumps, her skin from inside her thighs, front to back is a burgundy color. The heat coming off it is intense. She had diarrhea on Saturday so bad that she couldn't make it to the bathroom and just cried with it all over her clothes and on the floor since she can't wear panties. She took Imodium and hasn't gone at all since. She's scared to take a laxative with the radiation each day and chemo (5-FU and Mitomycin) which both cause diarrhea. Today I brought mom home and gave her a dose of hydrocodeine and an anxiety pill. She slept a lot and would wake up to pee (ouch); apply more of over counter crap, and to drink water. One more thing, I don't think the doc likes me researching and asking so many questions This week I asked about the dilators b/c of the post last week. She said not to worry about it until treatment is over. The nerve of me to ask questions.

Response: i think the painkiller pill prescription is perfectly reasonable - I'm given pain pills for the pain my bones from cancer - when It hurt so bad in the beginning that I couldn't lay still on the radiation table my radiation doctor gave me something called ACT - basically morphine on a lolly pop. why can't your mother's doctor at least give her the pain pills.I think you should visit another doctor and ask for a 2nd opinion - I can understand you're being mad. this doctor sounds almost heartless.

Another Response: remember, you don't have to beg - you can leave this doctor and go to another - yes there that would be a break in your mother's radiation treatment, which would be a complication for the next doctor, but you are the patient and you can "vote with your feed" and leave her care at anytime and get a new doctor.the only complication is this doctor has you a little over a barrel that she has started this treatment and it's much harder now to switch to a new doctor.but only harder - not impossible - pain relief is the right of any patient, this doctor wanted to take a wait and see position on the cream (because she thought the inconvenience of removing it was more important than her patient's pain relief) some form of pain relief seems like the the least she can do now. if this doctor can't see that, I'm certain there are any number of other doctors who surely would.and regardless, I would switch doctors after this whatever the outcome. clearly this is not a doctor who is working as a partner in this treatment plan, but running the show how she sees fit.I'm not trying to inflame the situation here, but it is important I believe that you and your family take charge from this doctor.

And Another - I hate to say this, but this doctor sounds cruel. When I went through radiation I had a lot of difficulty as well, but my radiation nurse would meet with me at the drop of a hat (which for a couple of weeks was every single day) to try to find a medication or other procedure to help me deal with whatever side effect was bothering me at the time. And the doctor was available as well if either myself or the nurse felt she couldn't adequately address my issues. They were very compassionate. I had tons of prescriptions - all for different issues and if one didn't work we quickly moved on to something else.I brought up the vaginal dilator thing and the nurse told me they would normally discuss it after treatment, but as I brought it up and wanted to discuss it earlier, they were more than happy to discuss it and answer any/all of my questions at that time. After treatment we went over it again and I got specific directions on what needed to be done.Of all the professions to have a poor bedside manner, a radiation doctor, yikes. I am so, so sorry your mother is having to go through this.

Another - P.S. - the silver sulfadiazine cream is NOT difficult to get off. Before I went in for treatment I would take a shower with soap/water and poof! It came off - no scrubbing, no nothing, it just washes right off. Where the doctor gets the idea that it is hard to get off is beyond me. Cruel I tell ya.

Last One - I was "turned in" by the radiation technician because I wasn't telling the radiologist how much pain I was in. Boy oh boy did I get a talking to by the nurse and the doc.They were so upset with me because I was "suffering in silence". I get tears now when I remember just how kind and compassionate they were to me. I am so grateful to them because I know I would have not been able to finish my treatment without their care and support,Your Mom deserves better treatment.

For more comments, click below:

Radiation getting Unbearable 1, 2by momsCancer on Wed Jun 11, 2008 12:21 pm

I've bragged on Mom's radiologist saying how lucky we are to have her. But now that Mom's pain is high and still climbing from the burns and she still wants to try to appease us with over the counter bull crap, I'm running out of patience and getting flat out mad.

As if that's not enough, I think this week's chemo is showing it's ugly head in the form of bad flu-like symptoms. But unlike the burns from radiation, the oncologist at the chemo treatment center prescribed plenty of drugs ready and waiting to attack the chemo side effects and his head nurse said if they don't work, they'll quickly find something that will, just to call her. The radiologist at the hospital needs to get with the program!

Hopefully tomorrow we'll come home with some prescribed drugs/ointments to relieve the burns from radiation. She's gonna need that and more to help her ride out the next 11 hits of radiation.

Monday, June 09, 2008

Chemoville

Wasted away again in Chemoville.

This morning was pretty rough. Mom's anxiety level was off the charts. We left the house in pouring down rain, she took an anxiety pill, and made it to the hospital for radiation before 8am. She didn't wait long before being called back for her daily dose, unfortunately she got the terrible technician. (of all days) This technician had trouble lining her up so it took longer. Mom said that as she held the position, butt in the air, the radiation machine kept making the running noise over and over. It kinda sounds like the drill at the dentist office. Anyway, the technician wasn't letting Mom know what she was doing. Mom panicked thinking they were zapping her over and over again with radiation. Mom said it was all she could do not to come off the table swinging. With just a little communication from the technician, she could have avoided the panic attack and feelings of claustrophobia. Anyway, this technician doesn't have a clue, too bad there's not some way she could experience the humiliating butt in the air with people drawing red and blue lines on each cheek with an assimilated radiation machine clicking and running. And afterwards, maybe even take a trip to assimilated chemoville for good measure.

Mom's head was pounding as we walked out of the hospital, you could see the pain on her face. She asked me if I thought she could handle some coffee so that maybe the caffeine would take the edge off her headache. As much as I wanted to give her anything to help, I told her it was not a good idea. She's not suppose to have any caffeine when on chemo so I was scared she'd really pay for it later. As we got in the car to head to chemo, I encouraged her to ditch the wig. It was just making the headache worse, cute just wasn't worth it today. She grabbed a hat from the backseat and we went into the chemo clinic.

We walk into the treatment room, first time ever I've seen it empty. Mornings might be the best time to come. I start scanning the faces of the nurses looking for Favorite Nurse. She's not there so Mom picks a recliner to wait. A nurse came to flush her pic line and take blood to check all cell counts. Okay, this nurse was a complete idiot. I guess you could say she was a total multi-tasker because as she messed with Mom's pic line, she obnoxiously chomped on gum all the while flirting with the guy nurse. Boy,when it rains, it pours.

When Idiot Nurse finished, we went back to the waiting room to wait for the doctor. Mom's anxiety pill is not even making a dent on this day. Finally, we were called back to meet the doctor. Mom really likes her doctor, but hates doctor days especially right before chemo. He checked her out and explained the plan for surviving the next round of chemo. He told her that today's blood work showed her red and white blood cells lower than what he'd like, but they'd go ahead with chemo. He gave her an antibiotic prescription to keep at the house. He said to continually check her temp and if it hits 100.0 to call them and start taking the drugs. He's also going to give her a shot on Friday that goes straight to her bone marrow to raise her white blood cell count. Get this, this one shot costs $4000.00! Unbelievable huh? He said to check with the financial person before getting the shot on Friday to make sure insurance will cover it. ( ya think) The nurse said that there won't be a problem, because they can either pay for the $4000.00 shot or risk having to pay $50,000 for a hospital stay. The doctor also said they'd give her more drugs to hopefully fend off the mouth sores and yeast infection. I swear, Mom could open her own pharmacy with all the drugs she's had to buy.

The doctor's head nurse stuck her head in to check on Mom. She's really awesome and was Mom's rescuer when the mouth sores were in full swing. She told Mom that of all her patients, none were as sick as she was and that her mouth sores/yeast infection was about the worse she's seen. There's no guarantee that she won't get the outbreak again, but I know that if we call Rescue Nurse, she'll be right there. After she left the room and Mom and I waited for the doc to come back with the prescriptions, I told Mom, well that explains why she felt so bad and maybe now she could give herself a break from the guilty feeling of not being strong enough. She started crying as we continued to wait for the doc.

Finally, I got up to go find the doc and beg (if I had to) for something to ease Mom's anxiety. He said no problem, the nurse gave us the prescriptions, and we head for our final destination, chemoville. The treatment room has more passengers but still nothing like when we've been there before. We pick a chair far away from the first chair and hopefully away from Idiot Nurse. The second nurse was better and she brought the feel-good shot which was definitely a plus. Mom immediately relaxed as she was injected with chemo. Afterwards, the better nurse hooked up Mom's pump full of 5-FU chemo and we were off as it continues to rain.

We made it home by 11:00 and Mom was in bed minutes later. It's almost 3:00 and with the exception of one trip to the bathroom, a nibble on a cracker, and drink of water she's experienced the first few hours of her trip drunk and knocked out. That's a good thing!

Sunday, June 08, 2008

Chemo Eve

Twas the night before chemo and all through the house, we all lay in bed praying the chemo would pass. The car is gassed up and ready for the day, I hope this time's different to give us a break.

I know, pretty cheesy but I just couldn't help myself. It was probably Baby Girl singing Jingle Bells yesterday that made me think of Twas the night before Chemo. I've made it to Mom's to spend the night. Tomorrow will be an early start. We'll go to radiation at 8:00 and then off to chemo at 9:00. I'm sure it will feel like a full days work by noon. I hope we're home by then.



This week has definitely had it's ups and downs. Mom was pretty tired both Monday and Tuesday. We did go to that make-up thing called Look Better, Feel Good. There was a woman there with her daughter. She's fighting breast cancer. Her daughter is probably 14 or 15ish. Both her and her husband were diagnosed with cancer within a week apart. Can you imagine?



Anyway, Mom got a bunch of really cool FREE make-up and skin care products from Clinique, Mary Kay and such, probably a $200 to $300 value, pretty nifty. With 2 doctor appts and work that day, Mom was dragging. But what did her in were the hard folding chairs. I knew she wouldn't make it through the 2 hour make-up class sitting in those chairs. The radiation has really done a number on her, making sitting a problem. So after an hour, we left.



Wednesday, she went to work and when she made it home, she crashed. Thursday and Friday were great. Besides the increasing tenderness from radiation, she felt good and was looking forward to enjoying the weekend.



Oh, forgot to mention, her hair continued to fall out all week long. Mornings were pretty hard. I think every morning she hoped it would stop, but it didn't. Hair continued to fall out everywhere. She'd leave a trail of hair from the bed, to the bathroom, on the couch, to the car. She continually ran her fingers through her hair pulling out handfuls. She didn't even notice how much she messed with it and attempting to fix it each morning left her really upset. By Thursday, her hair looked like one of those barbie dolls with chunks of hair gone and only strands of hair left. We went wig shopping on Thursday, Little Man gave a really good account of our shopping experience, check it out at http://www.sirtalksawholelot.blogspot.com

After a couple of good days, we all had high hopes for the weekend. She really deserved a great weekend before chemo. But she woke up nauseous. I'm not sure if it's chemo, radiation, or nerves anticipating Monday's next round of chemo. Whatever it was from, she didn't feel good like the two days before. She finally gave up on her hair and let Dad give her a buzz cut. That was pretty traumatic. I can't imagine the initial shock of looking in the mirror. Needless to say, it was a rough morning. Her burns stretch from the inside of her thighs to her butt and everywhere in between which left her miserable for the complete day. And if that wasn't bad enough, the stress and worry of Chemo Monday pushed her closer to a complete meltdown.

She's had a little diarrhea over the past couple days, but not bad. She told me Saturday afternoon that it was beginning to strike with more urgency and she was worried that she might not make it to the bathroom. As I said before, the burns from the radiation really have become intense this week so she's ditched her panties. Remember, she's only wearing dresses and skirts b/c pants hurt too bad. She says without panties, it's kinda breezy. Dad says that we can all show her support by not wearing underwear too. Hubby says it works for him. . . go figure. Anyway, Mom was in the kitchen Saturday evening, diarrhea hit and she couldn't make it to the bathroom. It got all over her clothes, the floor, pretty much everywhere. She was horrified. Definitely one of the hardest things about this disease is the loss of control over your body, emotions and mind.

Speaking of mind, there really is something to chemo brain. I'm not sure if it's the actual chemo, stress, exhaustion or a combination of it all that affects you, but it is noticeable. She'll ask a question and then ask the same question a few minutes later. She's also losing words. Saturday while watching gymnastics on TV she asked, "What is that thing they're on?" It was the balance beam. She said concentrating at work is tough and most of the time around people, she's pretty quiet. She zones out often which worried me. I finally asked her if she was just too upset to talk or if the fatigue and meds had her comatose. She said most of the time, she's comatose, maybe that's a good thing. Chemo brain is very real and was discussed recently at http://www.colonclub.com/ just click on Colon Talk at the top and scroll down to the post about chemo brain.

Sunday was better. Imodium stopped the diarrhea. She came into town on a mission to find underwear, going without is just too scary at this point. My best friend and I joined her on the mission. My bf found some really soft silky panties and with a little work, I think they'll do. She bought size large so it'll fit loose. We're going to cut the elastic out around the legs, so that hopefully it will just hang and not irritate the burns on the inside of her thighs. We all agreed that we need to design undergarments for those going through radiation, there's definitely a need and market there. Also, bf brought us some gels and lotions for burns from her work. One was aloe with Novocaine to numb the burns on the inside of her thighs. It works great! After listening to my whiny butt till late Saturday night, bf said that she woke up in the middle of the night thinking about the burn cream. She text me early Sunday morning and said she'd get the stuff from work and meet me in town.

I must confess, I still haven't prayed. Bf thinks I'm angry with God about this whole ordeal and she maybe right. I can't really explain exactly why, but when I go to pray I just can't find words. I'm relying on when in dark points in your life, God carries you through not b/c how much faith you have or how much you've prayed, but just b/c he loves you and said he'd never leave you or forsake you. I haven't felt alone through any of this and maybe like this song on the CD my bf let me borrow (she somehow knew from the beginning I'd need it), It says, "This is what it means to be held, how it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise is that when everything fails, you'll be held." I might have a few words wrong, but you get the gist of it. I've also thought of the one set of footprints in the sand, through the hardest parts of your life, He carries you. I think that's the only way me, dad, and especially mom is making it through. This whole cancer experience brings new definition to the Valley of the Shadow of Death. At this point there's not been a sudden healing and so we continue to watch Mom go through 14 more hits of radiation and 1 more chemo for her healing. Bf brought me 2 more praise and worship Cd's today. We've been friends since 3rd grade. She's been there for me through several really tough times, but I think this takes the cake. I'm not sure how I'd make it through this without her.

Okay, it's past midnight on Chemo Eve, so here's to having a better chemo tomorrow and to all a goodnight. (sorry, had to do it :)