P6140695 (1 photo), by melissa waller

I’d like to share my Snapfish photos with you. Once you have checked out my photos you can order prints and upload your own photos to share.
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New Website

Hi Everyone

We launched a new website that will host the blog from now on. Please go to www.themelissawaller.com to view blog updates. We have made the site even better by incorporating photos, video, message boards, shopping cart to purchase “warrior gear” and more!

Can’t wait to hear your feedback on the new website!

Melissa

Home again

I was finally discharged from CTCA this afternoon (Sunday)! I even drove myself home for the first time. I haven’t gotten much sleep the past few days (my fault) so I was a little tired from driving, but otherwise I felt great! I met up with a couple of friends today and enjoyed the afternoon just like I would before I was diagnosed…it almost felt normal again!

I believe the next time I go back to ctca is on Wednesday for rehab and follow up appointments with each doctor. When I was discharged today, the docs increased my methadone dosage and gave me some other meds that are low grade steriods. This should help with some of the stomach issues and nausea I have been experiencing. I am hoping that this time we have the magic concauction and I can start focusing on improving my strength and stamina instead of sleeping all day.

I don’t have a caregiver for another week or so, so this will be interesting to see how my first week “on my own” goes. Wish me luck!

August 1

Today is Saturday. I have been here at CTCA since Thursday and getting really anxious to get back home! Fortunately I am feeling great! I feel like I have more energy than I have had in a long time and the pain is manageable. My leg is getting swollen again and I have this damn itchy feeling that has been bothering me all day, but other than that I feel good.

I am so excited that we finally launched the website www.themelissawaller.com. In fact, so far the jewelry has been a HUGE success both off and online! I have really enjoyed giving the necklaces/bracelets out and explaining the “spirited warrior” meaning behind it. To me, it means so much more than just a peice of jewelry and I have to admit, I owe it to Ann Marie for coming up with the “brand”.

I had several visitors today which was nice since I haven’t seen my family (except for Kathy) for awhile. We have had fun just lounging around the hospital and passing time roaming the halls and going back and forth between the cafe and my room. It’s funny how time can pass when one is isolated like this. The world outside seems like a totally different time and place. Thankfully, I feel safe here even…if the cancer is spreading. I have spent the past couple of days really thinking about coming to terms with everything and thinking about what I want over the next few months, year, and beyond. Unfortunately, because health can come and go when it pleases it makes it difficult to plan =(. I have found that the relationships that I have made and new friends here at CTCA have helped to support me through these difficult times.

Erika and I

Rob Ray & I

The Bear Claw Warmer

Lara...pregnant??

Dustin, his son Jake, and I

New Website is Live!

The Definition of Spirited Warrior

After weeks of working with Whizbang Interactive, we finally have the finished product! There are still a few things that need to be added or changed, but for the most part the site is complete.

This will be the second website I have ever worked on personally, and am so proud to say that this is a job done by Whizbang. Their staff has been wonderfully patient throughout this process.

Once you go to the site you will find some of the same information that I had on the blog such as: timeline, about Melissa Waller, donate online, upcoming events, and the blog.

Some NEW and exciting features include: video media player with short vignettes from an interview I did with empowerher. There will be more interviews added in the next couple of weeks that will also feature the founder, Michelle King Robson. In addition, we have incorporated a photo album that can be viewed through a regular slideshow or in 3D using a product called Cooliris (you will need to download a version of this to view in 3D, a resource area where viewers can look up terminology, up to date research and more! The most exciting part is the online bulletin and shopping cart. The online bulletin is an area where viewers can share with each other thoughts and opinions based on themes, versus just responding to me through the blog posts. The online shopping cart is an area where you can purchase “warrior gear” to show your support and spirit.

We will still be adding a flash intro within the next couple of weeks. In addition, the blog, photos, and message boards will always have fresh content, so you can come back to the site daily and never have to read the same information.

If you have any comments or thoughts on how we can improve the site, I would love to hear from you!

Thank you and I hope you enjoy the new site!

Cousin Julie’s Caregiver Notes 7/16-7/22

Following are caregiver notes from my Cousin Julie Herrmann from Cali

7/16/09 Thursday
I arrived about noon in Phoenix by plane and took a taxi over to her condo. I cleaned out the cat litter and got toilet paper for the house. I ate some lunch then head over to CTCA to see my famous Cuz.

Quickly I learned about Melissa’s condition when I arrived at the hospital.
Melissa had already been weaned off morphine and had begun methadone which was upped to 20mg 3 x day from the previous dosage of 20mg 2 x a day. She had Phenigran that made her tired earlier. She was using a pain pump with 2 mg. of Dilaudid as needed to manage pain. Today she also had a blood transfusion, 2 pints, to increase red blood cells. At 5:00 the Dr. Tran asks if she wants to go home. Melissa asks can I go home? She is frustrated because she is not sure she is well enough to go home. She says her pain level has not changed from 2 days ago. Dr. says she can go if she wants or stay. She asks if he thinks it is a good idea because nothing has changed. He says it’s up to her. Melissa thinks she should stay because she doesn’t want to go home only to turn around and come back again and her pain has not decreased. Dr. is very wishy-washy. He says that the methadone and new dose changes can take from 3-5 days to take full effect. Not instant. That she can stay if she wants too. She decided to stay.

She was on her computer doing some online shopping, checking in to her blog, etc. Her friend Gina, another cancer patient there and says well maybe you should wait to see how you react to the blood transfusion. Melissa said she had them before and was released outpatient. For dinner she ate some veggies. Vitals 7:30 Pulse 99 Blood Pressure 111/71. Temp normal. At 7:53 she had more Dilaudid, 2mg, for breakthrough pain. Her friend Erica visited and she shared with us the new website she is getting ready to launch, I slept on the couch/ visitor bed in her room next to the window.

Gina and I outside CTCA

7/17/09 Friday

AM We walked down to the cafeteria. Melissa had a good breakfast of two eggs, toast & jelly. Her vitals BB 124/74 Melissa told them the pain is not much better. She didn’t sleep well the night before due to pain. She requested more Dilaudid 4mg pill and 2mg intravenously. Nurses realized they forgot to give her the Tarceva the night before. At 12:15 she took more pain meds. Her friend came to visit with her daughter. A clown came to visit named, “Puzzles” and gave us red noses. She left two small puzzles with us. I run home to get her more things like underwear and another dress for her stay. In the evening (5:30) after I returned she took 4mg of Zofran for Nausea she was experiencing off and on. After dinner in the cafeteria we went outside for a bit. A dust storm, called a Haboob (Arabic term for sand storm), was developing. Winds kicked up and we went inside. Her friend whom worked there wasn’t sure if she would be able to drive yet as visibility was low. I was so surprised by this weather having heard a little bit about dust in the air there before but never seeing it how bad it was.

It was noted by a nurse that Compazene given to her before for nausea gave her a rash and should be avoided. She also had a 20 mg of Furosemide Lasix, intravenously, for the edema (swelling) that returned to her right leg. Temp was 101. Nurses noted a rash around the site of the porto cath from adhesive when they were cleaning the site. 7:30 more Dilaudid 4mg orally. Lasix 20 mg. intravenously. 8:18 she had more Phenigran 25 mg for nausea. 10:00 PM methadone 30 mg. Upped from previous dose. Miralax, Pepcid AC and Tarceva. Temp back down to normal. She seemed a bit out of it though because of the methadone. Talking in her sleep then awake thinking that whatever she was dreaming was really occurring.

7/18/09 Saturday.

She slept through the night. We went down for breakfast again when her friend Rosanna, her mother and her two children arrived at about 11 am. She took some Dilaudid, 4 mg. They brought her a beautiful cross you could comfortably clutch. Melissa had some bagels. After we got back from brunch Melissa took 30 mg, of Methadone.

We left for home at 2;30. We swung by Walgreens to fill prescription for Stolpan and other meds. As soon as she got home she wanted to organize the place. I helped her throw out old food from the pantry and fridge. Then she was very tired and out of it, sleeping on the couch. She said she felt much worse at home. While I was going back to pick up her meds, Melissa said she fell in the restroom but she was okay.

Her friends Holly and his Greg were visiting. They were donating the mileage for their trip to New Zealand. At 5:00 she put on a new Stolapan patch which you put behind your ear to help with nausea that lasts 72 hours. Melissa would nod off easily when talking. I cooked pasta and marinara sauce for dinner. She ate a little bit. After they left she continued to be very drowsy not make sense. She came out of the bedroom to the living room and said, “What happened to your friend who was just here, with the short red hair?” I replied, “What? There’s no one here,” She said, “Oh, I thought you were just talking with someone.”

She took more meds at 10:30. She tried to sit on her barstool and get on the computer but she nodded off. I had her move to the couch because I was concerned she would fall off the stool. She fell asleep on the couch and was too tired to move. Later in the night Wes found her on asleep in the bathroom and brought her to bed.

7/19/09

Melissa slept in until 11 AM but got up briefly to take her 6 AM meds. She tried to eat some breakfast. She took her 2 PM meds before she headed out with Wes and I to the pool. But, as soon as we headed out, Melissa said she didn’t feel well and turned back to go inside. She threw up 3 times and it really aggravated her back pain, so she took more Dilaudid. She fell asleep on the couch. I brought her a Subway sandwich, chips and a cookie, she ate a little of each. Melissa recalled how her Mom used to make home made popsicles. Wes made some Vitamin Water pops in the freezer. She was more lucid today, perhaps because she did not keep down some of the pain meds causing the drowsiness. For dinner Wes picked up Pizza for and we watched a movie. When she took her 10 PM meds, Melissa decided to take 10 mg less of the Methadone, from 30 to 20 because it was making her so tired and out of it. We talked about adjusting her meds and consulting with doctors the following day after her radiation treatment.

7/20/09 Monday

Mel took her 6 AM meds, along with Dilaudid (2mg) again. She said her back was in pain and that she fell asleep with somewhat upright with pillows propping her. We went to radiation at CTCA. After the 9:45am appointment we went to the cafeteria to eat something. Melissa had some cheesecake with strawberries and took more Dilaudid (4mg). Every time she gets off the hard radiation table she is in so much pain. She call her care manager about her pain and the fact that the upped dosage of methadone was making her hallucinate yet her pain felt the same. Though it seemed worse in her lower back and hip due to throwing up the previous day. Melissa was admitted to the internal medicine clinic. She told the nurse her pain felt like an 8 ½ and she was cold. They brought her some blankets. They took her down for x-rays by wheel chair to see if their was a possibility of any new fractures. Her x-ray turned out fine. Dr. Abbas suggested she try 20 mg 3x a day vs. the 30 mg, 3 x a day and up her intake of Dilaudid as needed from 2- 4mg to 4 to 8 mg at a time every 4 to 6 hours. At noon she took 2 more mg of Dilaudid. Dr. Abbas suggested they may want to change up her 7.5 mg of Arixia to 10 mg if her leg swelling did not improve. Dr. Abbas also mentioned that the Celebrex may help with bone pain as well that she would begin taking that day. The nurse also replaced the plastic surrounding the portacap with Sorba view that was better for sensitive skin. We picked up her prescriptions and headed home. When we got home Melissa checked the front porch for packages arrived. Her new jewelry she co-designed and planned to sell to help raise funds for her care was inside. She was super excited and happy with the design and cute boxes. I took various pictures of the jewelry with her camera. Wes got us wraps and sandwiches for lunch.

Finally! Spirited Warrior Jewelry arrives!

She was on her computer doing some online shopping, checking in to her blog etc. Her friend Gina another cancer patient there and says well maybe you should wait to see how you react to the blood transfusion. Melissa said she had them before and was released outpatient. For dinner she ate some veggies. Vitals 7:30 Pulse 99 Blood Pressure 111/71. Temp normal. At 7:53 she had more Dilaudid, 2mg, for breakthrough pain. Her friend Erica visited and she shared with us the new website she is getting ready to launch, I slept on the couch/ visitor bed in her room next to the window.

7/17/09 Friday

AM We walked down to the cafeteria. Melissa had a good breakfast of two eggs, toast & jelly. Her vitals BB 124/74 Melissa told them the pain is not much better. She didn’t sleep well the night before due to pain. She requested more Dilaudid 4mg pill and 2mg intravenously. Nurses realized they forgot to give her the Tarceva the night before. At 12:15 she took more pain meds. Her friend came to visit with her daughter. A clown came to visit named, “Puzzles” and gave us red noses. She left two small puzzles with us. I run home to get her more things like underwear and another dress for her stay.

It was noted by a nurse that Compazene given to her before for nausea gave her a rash and should be avoided. She also had a 20 mg of Furosemide Lasix, intravenously, for the edema (swelling) that returned to her right leg. Temp was 101. Nurses noted a rash around the site of the porto cath from adhesive when they were cleaning the site. 7:30 more Dilaudid 4mg orally. Lasix 20 mg. intravenously. 8:18 she had more Phenigran 25 mg for nausea. 10:00 PM methadone 30 mg. Upped from previous dose. Miralax, Pepcid AC and Tarceva. Temp back down to normal. She seemed a bit out of it though because of the methadone. Talking in her sleep then awake thinking that whatever she was dreaming was really occurring.

7/18/09 Saturday.

She slept through the night. We went down for breakfast again when her friend Rosanna, her mother and her two children arrived at about 11 am. She took some Dilaudid, 4 mg. They brought her a beautiful cross you could comfortably clutch. Melissa had some bagels. After we got back from brunch Melissa took 30 mg, of Methadone.

We left for home at 2:30. We swung by Walgreens to fill prescription for Stolpan and other meds. As soon as she got home she wanted to organize the place. I helped her throw out old food from the pantry and fridge. Then she was very tired and out of it, sleeping on the couch. She said she felt much worse at home. While I was going back to pick up her meds, Melissa said she fell in the restroom but she was okay.

Her friends Holly and his Greg were visiting. They mentioned donating the mileage for their trip to New Zealand. At 5:00 she put on a new Stolapan patch which you put behind your ear to help with nausea that lasts 72 hours. Melissa would nod off easily when talking. I cooked pasta and marinara sauce for dinner. She ate a little bit. After they left she continued to be very drowsy not make sense. She came out of the bedroom to the living room and said, “What happened to your friend who was just here, with the short red hair?” I replied, “What? There’s no one here,” She said, “Oh, I thought you were just talking with someone.”

She took more meds at 10:30. She tried to sit on her barstool and get on the computer but she nodded off. I had her move to the couch because I was concerned she would fall off the stool. She fell asleep on the couch and was too tired to move. Later in the night Wes found her on asleep in the bathroom and brought her to bed.

7/19/09

Melissa slept in until 11 AM but got up briefly to take her 6 AM meds. She tried to eat some breakfast. She took her 2 PM meds before she headed out with Wes and I to the pool. But, as soon as we headed out, Melissa said she didn’t feel well and turned back to go inside. She threw up 3 times and it really aggravated her back pain, so she took more Dilaudid. She fell asleep on the couch. I brought her a Subway sandwich, chips and a cookie, she ate a little of each. Melissa recalled how her Mom used to make home made popsicles. Wes made some Vitamin Water pops in the freezer. She was more lucid today, perhaps because she did not keep down some of the pain meds causing the drowsiness. For dinner Wes picked up Pizza for and we watched a movie. When she took her 10 PM meds, Melissa decided to take 10 mg less of the Methadone, from 30 to 20 because it was making her so tired and out of it. We talked about adjusting her meds and consulting with doctors the following day after her radiation treatment.

7/20/09 Monday

Mel took her 6am meds, along with Dilaudid (2mg) again. She said her back was in pain and that she fell asleep with somewhat upright with pillows propping her. We went to radiation at CTCA. After the 9:45am appointment we went to the cafeteria to eat something. Melissa had some cheesecake with strawberries and took more Dilaudid (4mg). Every time she gets off the hard radiation table she is in so much pain. She call her care manager about her pain and the fact that the upped dosage of methadone was making her hallucinate yet her pain felt the same. Though it seemed worse in her lower back and hip due to throwing up the previous day. Melissa was admitted to the internal medicine clinic. She told the nurse her pain felt like an 8 ½ and she was cold. They brought her some blankets. They took her down for x-rays by wheel chair to see if their was a possibility of any new fractures. Her x-ray turned out fine. Dr. Abbas suggested she try 20 mg 3x a day vs. the 30 mg, 3 x a day and up her intake of Dilaudid as needed from 2- 4mg to 4 to 8 mg at a time every 4 to 6 hours. At noon she took 2 more mg of Dilaudid. Dr. Abbas suggested they may want to change up her 7.5 mg of Arixia to 10 mg if her leg swelling did not improve. Dr. Abbas also mentioned that the Celebrex may help with bone pain as well that she would begin taking that day.

I went to the market to get what Melissa needed. She really likes bagels and requested berries.. I think it’s important that caregivers try to stick to what she needs as her appetite varies. Don’t get too much of something you cook because she may not be able to eat much due to nausea and leftovers are not appealing. Another storm was coming in when I left the market. For dinner I made Chicken Katsu. Melissa’s friend who came over to watch the bachelor, helped me cook the meal making the yummy rice paired which we paired with broccoli spears. For desert we wrapped the berries in a crepe and added for Whip Cream. Melissa ate a bit of everything but she especially liked the desert.

7/21/09 Tuesday

We went out to CTCA for Melissa’s radiation therapy again. Before leaving she took her morning meds and at 7am 6mg of Dilaudid for pain. She had a lot of pain and difficulty walking in to radiation. The hard table only made the pain worse. She went up to Internal Medicine afterwards at about 1030 AM. Mel requested Dilaudid by IV, The doctor was resistant and wanted her to just take more in pill form, But, she was in such great pain she wanted it to work right away as relief is provided immediately with IV instead of the pills that took 30 minutes to 45 minutes to work. Melissa grew frustrated when he said you don’t look like you are in a lot of pain, because you’re not crying. Melissa then looked like she wanted to cry and stated firmly that she wanted something to work now and she was feeling close to a 10 no matter how she looked. Finally he agreed to 3mg Dilaudid IV. She did have to wait a little bit while the nurse checked her vitals. She was hoping to diminish the pain enough so she could at least make it to her next appointment. It’s crazy how someone could question her pain level based on how she looked. These doctors may mean well but they have no idea how it feels to be in her shoes, nor do most of us. Melissa is tough and believes if you can’t feel well on the inside at least try to look good on the outside. I agree. Who doesn’t wake up on the wrong side of the bed or have a day where they just need a little pick me up? A little make up can make difference and cheer you up instantly. Whatever it is that helps to motivate and you can keep going is worth while.

We left CTCA Melissa and headed over to Scottsdale for the 12pm dash board meeting at www.empowerher.com. They had lunch provided for us. Her friend Tina whom worked there invited her to come. The CEO asked Melissa to share her story with the entire staff as well as her thoughts on CTCA, and how she thought they could improve the website. She also mentioned her new Jewelry line we were wearing. Everyone was very moved by her story. (1 PM 2 more mg of Dilaudid) They also read a nice letter saying they named a new web/marketing project they were working on after her. After the meeting, we went over to another building where they wanted to film an interview between Melissa and their founder. I felt extremely proud to call Melissa my cousin after watching the interview process. She went to great lengths to share her story in hopes she could inspire and help others. All the while trying to manage her own pain. During a break from filming she took her afternoon meds. After filming they gave us a tour of their office space and took still photos of Melissa alone, with the founder, and with me. They even had a welcome sign for Melissa and me. They really treated Melissa like a celebrity.

7/22/09 Wednesday

When she woke up and took 6 AM meds she also took 6 mg of Dilaudid. Today was Melissa’s last day of her current radiation therapy. We made sure the next dosage of Dilaudid (4mg) for pain was taken just 30 minutes prior to the treatment so it would kick in just as she got on the hard table for radiation. She also consulted with a doctor about future treatments, including rehab to strengthen her back and maybe more acupuncture as radiation was not helping reduce the cancer which was causing the pain. Vegan Omega -3 ( sans fish ) was also suggested as an alternative to the Fish Oil Omega 3 which wasn’t fun to take. We chatted with her friends who worked at CTCA after eating in the cafeteria. A great place to stock up on cheap bottled drinks Melissa likes, including flavored water by Dasani and Vitamin Waters. Yummy deserts like carrot cake and baked cookies are not to be missed. During my stay and visits to the hospital I taught the “coffee making lady” how to make me an awesome half caff soy latte sweetened with raw sugar” She didn’t know what I was asking for at first, so I told her how my favorite place (The Coffee Bean and Tea Leaf makes it at home. (Starbucks can hardly make things to order where I live with out giving you the third degree for being picky, yet she got it.) I know so LA right?

We got home in time to meet Melissa’s friend Dan who brought over a nice lunch to share with us. After he left her girlfriend Tanya also stopped by to hang out a bit and pick up the golf set she won during a previous fundraiser. Melissa took a nap. Later we headed out to find her dress for my sister’s Laura’s Wedding. We drove far out to Paradise Valley only to find out the one store did not have the size we thought, but another further out store did. So we made the trek out there. Melissa loved the color and style of the dress. She looked great in the Sangria color. At first the seamstress was reluctant to take measurements because it was so late in the day, and that we may have to come back the next day. But I told her we drove far and that she wasn’t feeling well after just getting out of the hospital recently. She was happy to help. She even said when Melissa was changing that she would pray for her.

Me trying on the bridesmaid dress for Laura's wedding

7/23/09 Thursday

My last day visiting Melissa before my flight left at noon. It was so nice to catch up and share stories. She asked about my life and how my family was doing as well as sharing childhood memories and how her family was doing. We had a lot of catching up to do as before a quick visit (Stopping by for a few minutes with my Mom) in April, I had not seen her since 2003 when my sisters, a friend, and I came to cheer her on while she was running The Rock n Roll full marathon. Melissa has inspired me to continue taking life by the horns and striving towards personal goals no matter the challenges or roadblocks you face. She continues to persevere and fight this disease while checking off her goals and to do lists. She is not only a spirited warrior but a testament to living life to it’s fullest every day! She is blessed to have so many wonderful and supportive friends who, quite a few I had the opportunity to meet. I am in awe of how well her sisters have organized caregivers for her.

Kathy’s Caregiver Notes

Following are caregiver notes from Kathy and Jan’s stay July 26-30.

Jan and I

Jan and I drove from Salt Lake to St George on Saturday to visit Jan’s brother and stay the night. We arrived in Phoenix Sunday night at about 9:00 pm. Melissa was arriving at the CTCA directly from her trip to Laguna Beach. I talked to her on the phone and said we would see her in the morning. She had her girl friends take her directly to CTCA because she was feeling very nauseas and had a lot of pain. Wes got home late from a short weekend trip to Mexico with his guy friends. Jan and I set to cleaning up the condo and went to bed early.

Me getting Xrays

Monday morning, Jan and I spent a good amount of time cleaning the condo and doing tons of laundry. I washed all the bedding, put on clean sheets, and took care of the kitties. I made sure the kitties got fed, brushed, nails trimmed, and litter cleaned.

Jan and I went over to CTCA at noon on Monday. Melissa was at an appointment to get x-rays so we went to a Thai restaurant nearby for lunch. The Thai place near Fry’s is pretty good.

Sister Kathy and I

When we saw Melissa she told us about her trip to Laguna with her girl friends. She was really excited to watch the surfing competitions. But she got nauseas and left some yum yums right there in the sand. No big deal, just kick some sand on top and pretend like nothing happened. But it happened twice and Melissa asked her friends to take her to CTCA when they drove back. I think it is incredible that Melissa was able to take this trip. It is great for her to be able to feel normal and spend time on vacation.

Melissa looks much skinnier than the last couple times I saw her. Here leg is much less swollen and her face is skinnier. This may be because she is taking a lot less steroids. Mel took us for a tour of CTCA. She rode in the wheel chair. This place is very nice. Immediately I noticed how nice everyone is. Her digs are sweet. The room is large and has a “crabouch” in the corner for a guest to sleep on plus a reclining chair. Nice flat screen TV with lots of channels. The place is very quiet – no beeping machines or loud kids. The cafeteria serves healthy foods and is very inexpensive. (Minus that they close at 7pm.) Jan and I enjoyed our anniversary dinner with Mel for only $8. Cheap date, awesome. There’s a salon in the building, a PT room, and Jan’s fav, Starbucks happy hour. Don’t miss the $1 lattes between 2 and 4 pm.

People talk about how hospitals are the worse place to be when you need to get rest. CTCA is so quiet and peaceful it is totally able to sleep, especially if you are on the third floor. I like the library where they have a game room with tons of games and puzzles to borrow.

Melissa was very cold on Monday and Tuesday. I don’t blame her. They keep the building at a frigid 68 F. Bring a sweater. Melissa likes to go outside to get warm. 115 F should do the trick.

On Monday Melissa got x-rays of her abdomen. They gave her a dye to look at her intestines. The doctors want to know why she is nauseas. I got to see the x-rays. Nothing abnormal. It was cool that I could see all the work they have done on her spine. The verdioplasty lights up on the x-rays. She totally looks bionic. At 3:30 Melissa got an acupuncture treatment to try and help her nausea. They leave the needles in for about 20 mins. She was resting and I had to keep reminding her to lie still so the needles wouldn’t fall out or poke her. She listens to relaxing music during the treatment. There are relaxation videos to watch on the TV like “Playful Puppies” and “Curious Kitties”. The acupuncture guy (Dorian) said the effects may take about a week with daily treatments. It tends to take a week for each month the symptoms have been occurring.

As you know, Melissa changed her chemo drug about a month ago. The Tarceva is supposed to have mild side effects that may include a rash similar to acne on her face. I see no sign of any rash, but this may be not so good since side effects tend to be proportional to effectiveness.

Me in front of CTCA

I totally love the new bracelets that Melissa got to sell on her site. She is selling them for only $25 and they look like they are worth much more. I plan to buy one and so did many of the people Melissa met in the hospital.

Dr. He is Melissa’s primary oncologist with CTCA. I already like him. I met Dr He at 4:30 on Monday when he came by to talk with Melissa about the effectiveness of the Tarceva. The side effects do not seem to be there and that may not be good but it is still too early to tell how well it is working. Dr. He says it is not time to be discharge until he sees Melissa eating and drinking well on her own.

Tuesday day was very uneventful. Melissa slept almost the entire day. Dr. Rodriquez came by multiple times at the urging to answer Melisa’s questions about the steroids she is currently on. The doctors are concerned about her adrenal gland. She is not producing the needed levels of steroids on her own. Dr, Rodriquez suggested this is because her body got used to the high levels of steroids she was on previously. This may all be related to her nausea and fatigue. It is possible that her body had become addicted to the steroids. She is taking cortef now to help her adrenal gland and hopefully help to ween her off the steroids. This new steroid is supposed to be almost ten times less strong than the past steroids she was taking. The purpose of the new steroid is for a couple of reasons. #1. She could get very ill if he doesn’t take something to produce the hormones that she is not able to produce due to the previous steroids. Her adrenal gland essentially stopped producing the hormone because she was getting such high doses of it with the old steroid. #2 It should help her to start having more energy and feeling better in general. #3. the amount that she is now taking should be a small enough amount to sort of jump tart her adrenal gland and have it start producing the hormone on its own. Understsandably Melissa is concerned that the steroids would make her stomach distended and her body bloated similar to the old steroids. Dr. Rodriquez was very confident that because of the lower dose and the different type of steroid that this would not happen.

Tuesday evening, Melissa went to visit another patient at CTCA. Kim is a 29 yr old mother of a 5 yr old girl. Kim has stage 4 colon cancer. The cancer has spread into her lungs and she has a lot of fluid on her lungs. Kim looked so weak and skinny. She had similar problems with blood clot and swollen legs. Unfortunately, Kim is not able to take any blood thinners due to risk of rectal bleeding. Kim is the sweetest girl and has a great support system around her. She constantly has multiple family members in the room with her. The two of them traded stories and it brought many to tears. The family did a prayer for both of them and it was so heart warming. Melissa gave Kim a bracelet and she loved it. Later at night, Melissa and I took a long walk around the outside of the building. She is so strong sometimes.

When I arrived Wednesday morning, Melissa told me she was being discharged. CTCA is supposed to email her a schedule of her appointments for the next two days. Those appointments should include; acupuncture, PT, check on her wounds on her bottom, pain management, and nausea management. She has some sores on her bottom that CTCA gave us an ointment for. Already it looks much better. I think it was simply crappy tree bark toilet paper.

As part of her discharge, a few new meds have been added. She is taking Requip to help with restless legs. Cortef is the new steroid. Reglan should help with digestion and nausea. Lasix (furosemide) is a diuretic. And Silvadene is a cream for skin sores.
We are canceling the Zantac because it affects stomach acid. Melissa needs to be careful of taking food or meds that affect stomach acid because it affects the absorption of the Tarceva.

Wednesday night and the boys are watching a movie as Melissa relaxes at home with her kitties and I type up my notes. I look forward to coming to Phoenix again but fear it might not be soon with school starting. Please look over the caregiver schedule and see when you can help out. Megan and I have to start school soon and won’t be able to help as much. We may tend to think that Melissa does not always need the help, but she wants the help and deserves our support. I love ya Miss.

Gina Davis and I

Back at CTCA

Today is Thursday. I believe last time I wrote I had just returned from Newport and checked into CTCA. They found I had an issue with my steriod levels in my body and I was released mid week. My sister Kathy and her husband Jan were here for a couple of days to help out, but had to leave this am to head back to UT for work. I was bummed they couldn’t stay longer. I feel like I haven’t seen my family in a long time. Today, I had the most horrible stomach pains so I called my care manager and she recommended I check back into CTCA. I just wanted to cry. I am sick of being sick. I am frustrated that I can’t feel normal just for one day. I am constantly on edge and watchful of signs that would lead me back to the hospital. For some reason I felt emotional, more so than most days. I was thinking about my visit with another CTCA patient, Kim who has colon cancer. Last time I was inpatient I went to introduce myself. She is 29 years old, married with a child. We exchanged stories and cried together. Her family was very supportive and said a prayer for us. I felt compelled to give Kim my “Spirited Warrior” bracelet that I had on. I explained to her the meaning and that she can call on her spirited warrior when she is in need. I know I do. I think Kim is still in patient here at CTCA so I will try to stop by tomorrow.

kim and I

Kim has a blog too http://kimfightscancer.blogspot.com/. If you get a chance check out her site and keep her in your prayers.

I finally got the shipment of the Spirited warrior jewerly! It turned out beautiful. The site is pretty much finished as well. We will most likely go live early next week.

Spirited Warrior Jewelry

. The tshirts, waterbottles, and hats will take a little longer to ship, but when the site is live you will still be able to order online.

NewPort Beach

Hanging with the girls in Newport Beach

Back from Newport Beach! What a beautiful place that is!

Wes let us borrow his new Tahoe, which was huge life saver! I can’t imagine all three of us smashing into my little audi with our baggage comfortably. I rode in the back most of the time which worked out perfect so that i could lay down in case i got car sick, which is pretty much how I felt the whole trip. We got into town Fri and hung low and decided Saturday to brave the crowds at Hungtington Beach’s famous surf competition. The swell was INSANE all weekend. I don;t think I’ve ever seen waves that huge before. It was big news all over tv. We loaded up on some breakfast at a cute sidewalk restaurant and headed to the beach. Within the first four minutes of sitting down, I felt completely nauseuous. Before I knew it, all of my breakfast was coming up and into the sand. I wanted to die of embarrasement and cry from frusteration. There was no time to feel sorry for myself because round 2 followed shortly after. We decided at that point it would be better if we were back at the hotel by the pool, bathrooms, and shade. Good Call.

Julie and I

Sunday morning I woke up with the most horrific pains in my stomach…almost like when i had the pancreatitis. I had seriously thought about calling 911. I was doubled over on the toilet with hot and cold sweats and dripping with sweat. Thank god it passed after 30 min and was at least tolerable. We left town shortly after that. The car ride was easy and I had the girls drop me off at CTCA. Turns out there was something wrong with my gall bladder and that’s why I was getting so sick. I have new meds for it now so hopefully this will fix itself.

julie and I hanging in the cabana

still here

sorry it’s taken me so long to post. I was in Newport Beach this weekend, which was awesome! However, I did get sick so I had my girlfriends drop me off at CTCA on the way home. I just was discharged late this afternoon and am still not feeling that well

more to come later…

More Pain

Yesterday was my last day of radiation. One would think this is a good thing, but in this particular case it’s not. We decided to halt any further radiation treatments at this point because it is not helping with the pain I am having in my back or hips. In fact, after I leave radiation I usually am in more pain from laying on the hard table. This past Monday and Tuesday I have had to go to the internal medicine clinic to get xrays and IV meds because I was in so much pain. I am so frustrated! It seems like everything we are doing is not working. Everytime I lay down or sit for more than a few minutes my back feels like its in excrutiating pain and usually takes me a minute to regain my composure.
I do have scheduled at CTCA more acupuncture and rehab physical therapy. I am hoping that this may help a little. At this point I am willing to try anything. I still haven’t gotten a rash from the Tarceva which is a side effect that usually means the targeted chemotherapy is working. The doctor did mention that there is about 4% of the population that don’t experience the side effects from the chemotherapy. I still have another couple of weeks before we do a Petscan and I can see how the cancer is progressing.

This weekend I am going to Newport Beach with a couple of girlfriends. I am so excited! I haven’t been out of town since last year! Those of you that know me know that I love to travel and usually try to get out of town once a month. I am a little nervous about going and having something happen. I wish I had a little more time before we go. I feel like I need to call my care manager and get this pain situation taken care of.

Home Sweet Home

I was finally discharged from CTCA yesterday. I was there for almost two weeks! Time seems to fly by in the hospital and there is no concept of time except for when I need to take my meds. It feels good to be home, although I am nervous that I may have another issue pop up and then I will have to turn around and head back to the hospital! As soon as we arrived home yesterday, I felt a little nauceous. I started drinking tea, taking medication, etc and nothing seemed to help. I laid down and put an ice pack on my head, and for some reason this seemed to do the trick temporarily.

Next week I have my last rounds of radiation. I believe they now want to incorporate the hip bones into the radiation, but I’m not sure if they are able to incorporate them in or if they want to pay an extra fee.

Waking up to reality

Last night I had the most vivid dreams. I took a benedryl last night to help me sleep through the pain and I remember having a couple of dreams so real I could smell, taste, and feel them. The last part of my dream I remember someone crying . The noise kept getting louder and louder until I finally woke up. I opened my eyes onlyto hear that that the crying hadn’t stopped. It turns out the patient that was staying in the room next to me had just passed away. The patient’s family members have been staying here at CTCA for the past 2 weeks or so. From what I could tell from all of the visitors she had during her final moments, it looked like she was a mother, daughter, wife, sister, and grandmother. For the most part all I have been hearing are positive things from patients here that have been cured or are in remission, so this just reminds me and amplifies the reality of cancer and how it touches the lives of many everyday.

I spoke with the doctor this morning and it looks like I will be here through Sunday. The reason why I have been here so long is because we are still trying to manage the pain symptoms. The stomach issue seems to have resolved itself, and I still sporadically get nausea, however the pain in my hip is the exact same since day one. It doesn’t hurt too bad to walk around. The most painful part is switching elevations, getting in and out of bed, sitting up and down, etc. The doctor confirmed that the pain is from mets and NOT a fracture in the illiac bone. At least this is good news. Since I have switched to methadone and the doctor upped the dosage, we are waiting to see if it helps with pain management. I am told that it takes about 5 days or so for the pill to take full effect. I am just praying that this is the magic bullet that takes care of the pain in my hip! I am also concerned about the deterioration of the bone. From what I understand, they cannot rebuild the density of the bone, but only stop the progression of it being eaten away from the cancer. Eventually if it becomes too fragile then they will need to input a rod into that area. I am starting to feel like Samuel L. Jackson in that movie “Unbreakable”.

July 15, 2009

Today is Wednesday, July 15. I am still here at the Cancer Treatment Centers in Goodyear, AZ. I’m not sure how long I will be here. I originally was admitted on Sunday because I had stomach issues and a fever. That pain slowly subsided and by Monday I had a new set of problems with my hip. The doc ordered some xrays and I am still waiting to hear the official written report. One of the nurses told me that unofficially there were no fractures. Whew! It must just be the cancer pain. The annoying thing is that now the pain seems to radiate down into my leg and lower back. It seems to be the worse when I am trying to sit up or down and get in and out of bed. I am back on the pain pump now which allows me to self administer pain medication every 8 minutes with the push of a button. This is great because I don’t need to count on calling the nurses everytime I have pain. On the other hand, they will now have to ween me off the pain pump and the IV pain meds before sending me home.

Me about to get Xrays

Today Tera came by to visit and CTCA had hired a photographer to take pictures of patients and their loved ones at no charge. The photographer came to my room and set up lighting so I could have pics taken in the privacy of my room. How nice is that? I guess they will be sending me the photos on a CD or email shortly. The photographer was nice enough to also take a picture or two on my camera as well. In the picture below, we are holding a pillow that says, “Hope”. I guess there is a lady or group that makes these pillows for patients. I have to say that I have never met so many eager volunteers that truly enjoy the work they are doing, and the help or support they are giving to others…all without being paid a dime.

Tera & I @ CTCA

Tomorrow my cousin Julie from California is coming to town to be a caregiver. I feel bad that I am still here the hospital, but at least it’s not as bad as some of the other hospital rooms that the other caregivers have had to endure. I am hoping that I can get out of here and we can at least do some sort of sightseeing or quick day trip. I found out today that I have done 9 out of 15 radiation treatments that were scheduled so I won’t have that commitment anymore, unless they decide that I need to do some radiation on my hip bones. I wouldn’t be surprised if that were the case.

A few months ago a guy named Brian had sent me a comment on my blog asking if I knew of any good Oncologists or support groups. We had exchanged a couple of emails and I had not heard from him since. Yesterday I received an email from him asking if I would like a visitor. I was excited to finally meet someone around my own age that had cancer that I could relate to! It turns out that Brian had some sort of throat cancer and yesterday was the first time that he actually was able to drink real liquids since his diagnosis in February 09. He was in really good spirits because he had just received a clean bill of health. That’s right! No more cancer for him! We shared our trials and tribulations of fighting this disease and the whole time I kept thinking that some of the things he had to deal with were much worse than mine. Ironically, he was thinking the same thing about me. I guess there is no right or wrong answer to who suffers more or which cancer is worse. It effects everyone differently, including caregivers, family and friends. I am so happy to hear that he is clear of cancer, but at the same time it makes sad and filled with envy. I keep hearing stories of patients that are being cured and it frustrates me knowing that I will never be fully cured. I just wonder when it will be my time to at least go into remission. Each day, week, month that goes by, I feel as though I am being tested on my ability to handle the situation. Someone once told me that “God only gives you what you can handle”. I guess this could be true. Throughout this process I have really had to adapt to different situations. Sometimes though I wonder if I would have made it through the first couple of months without the heavy duty pain medication. It is alot to deal with being diagnosed with cancer. I remember feeling a little overwhelmed at times thinking about all of the insurance paperwork, work stuff, getting to appointments, keeping my medications straight, being positive, and still be thankful to everyone that has helped along the way. Somehow during this process I have found sort of a happy medium and have learned how to deal with some of the emotions and tolerate the physical complications. It does get difficult though when day after day there is no good news and symptoms are getting progressively worse. At least the doctors are adaptable and when they find a treatment is not working, they will switch it up and try something new. It would be insane to keep doing the same thing and expect different results. I just wonder how many more verebrowplasties they can do on my back before the entire vertebrae is filled with cement!

tests

This morning started early at 7:30am. As I mentioned before, I have so much more energy since we switched up the meds. I also think that I have more pain as well which prohibits me from sleeping too long without medication. I thought today would be an easy day of radiation and a short test of my Gall Bladder. I was wrong. Today was horrible! The pain in my back and hips is getting progressively worse as the day goes on. This is the first time that I have felt the tumor pain in my left hip. As the doctor so bluntly pointed out to me this morning, I have a ton of mets to my femur and Illiac bone. I decided to finally try acupuncture to help with the pain. I believe i need to do a couple of sessions before I feel any difference

Acupuncture

More acupuncture

Radiation seemed to take forever today. Probably because I was shifting around the whole time trying to get comfortable. The “bed” was jamming into my back, making it feel as though I was rubbing bone against bone. The techs brought me straight to the Hideaway scan for my next test after radiation. I wasn’t quite sure what to expect from this test or how it would be executed. When we arrived to the room it looked like the radiation tables. The nurse told me that I would be injected with radioactive material and they would be taking photos through the machine every 60 seconds so I would need to remain perfectly still. Halt! I just got out of the radiation death bed and now you want me to spend a full hour laying down doing the same thing? I almost had a mental breakdown. I asked the tech to call the nurse to bring any kind of pain medication and sedative they could prescribe. There was no way my back was going to make it strapped down on the hard bed for an hour. Fortunately, they were able to administer me extra Dilaudid which helped to relax me a little and help with the excrutiating pain that I was feeling from radiation. The time flew by because I must have fallen asleep. Yeah! When the test was over and I woke feeling relieved that it was over, the tech told me I would be able to leave for an hour to eat lunch and they would be back to get me to do more photos in a shorter version of the scan. The second round was shorter…but still took about a half hour. The most difficult part was that the pain meds were wearing off and I was having a hell of a time just sitting up to get off the table. When I tried to swing my legs around to stand, it felt as though someone had taken a baseball bat to my left side and leg. I don’t think I have ever felt a deep pain like this before in such an awkward place like the hip and upper leg. It worries me that it is getting worse as time goes on. I mentioned this to the nurse and she was going to have the doc order some xrays for me. At least then I will know if there is any fractures and hopefully get to the root of the problem…if it is anything besides the cancer pain.

Today has just been a horrible day in general. It is such a mind game when your body is breaking down and staying out of pain becomes the most important task of every breath, second, minute, hour, and day. It completely overtakes you and can break a person down. I know I can handle alot of pain…maybe even more than the average person. There comes a point though when enough is enough! Everytime I stand or sit, tears start flowing because it just hurts too much. I keep trying to look towards the end of this tunnel and seeing some light of the situation.

I am not sure if they will be keeping me here again tonight or not. It hasn’t been discussed. I am guessing that I will probably need to stay since they are still administering the IV pain meds and will need to ween me off of them prior to going home. One of my worse pet peeves now is when others ask, ” so are you going to be discharged today?” You wouldn’t believe how many times a day someone asks. If I knew the answer, you probably would have known within the first few minutes of the conversation. Another is, “I hope you feel better”. I understand this is just a nice gesture and all, but does the person asking realize that there is no permanent feeling of being better? Don’t they realize I have a deadly disease…not a standard cold that goes away with some zpack? At this point, I don’t want to feel better or “be happy”. These are all such temporary emotions that can change in a second. All I want is to have pain under control so it is tolerable and manageable. I don’t need to feel “happy”, just content with the current situation.