Saturday, November 5, 2011

Happy Birthday, Mom!

Today is my mother's birthday. Every special event right now seems that much more special. I'm not sure if it's the realization of our own mortality, which makes us take notice of special days that much more, or perhaps it's the underlying tone of thankfulness. Nonetheless, special days are special. But everyday is truly special. Each day is one more day together.

I'm so very happy that I live close to my mother. That we have a relationship of friends. Before the cancer I spoke to my mom on the telephone multiple times per day. We shopped together, weekly. We had family dinners, regularly. Our relationship has always been extremely close. I can't say the cancer has made us closer - as we already were. But, it has seemed to make me take more notice of the time we have together and try to notice the enjoyment it brings.

Tonight, we will have a very small, low-key celebration at mom's house. She is requesting Publix birthday cake with whipped cream icing - so, that's exactly what she will get.

Pictured above are two arrangements of flowers sent to her from her co-workers. It was one of the most touching gestures, as each person brought in a silk flower and attached a personal note to my mom. As you can see, many participated and she has been taking time today to read the notes - with a box of tissues, of course!!

To all that have been keeping my mom in your thoughts and prayers - thank you!! And thank you all for the well wishes on her birthday. She has been receiving all kinds of posts on Facebook and they truly warm her heart.

Friday, November 4, 2011

Chemotherapy - Round 3 - We Need A Little Christmas, Right This Very Minute!

Last Friday began round 3 of chemotherapy. This one we went into prepared. She drank the water. She took the pills. She ate the small meals and snacks. All of the above still make it hell. That really is the only way I can describe what someone goes through as they fight for their lives by enduring hours of toxins pumped into their bodies.

Now, nine weeks into chemo, the treatments are really taking their toll physically. Her legs hurt. She equates it to the feeling of walking a five mile walk - only her walk is only halfway across her living room. Our trips out have decreased, as she doesn't have the strength or energy to walk through a store or go out to lunch. She is tired, yet, the chemo makes it so she has many sleepless nights. Often, I too, have sleepless nights, so we find ourselves texting one another, making fun of the sales people on QVC at 3am. However, they have had a lot of really neat Christmas decorations on around 5am. . .yes, we know the schedule well.

By Tuesday, mom's spirits were waning. So, amidst meals, meds and pep talks, we decided she really did need a little Christmas on Wednesday. It was November 2nd after all, Halloween has passed and while we normally wouldn't dream of decorating for Christmas so soon any other year. . .this year it feels most appropriate! She made the comment that having her tree up would make her feel like we are closer to the end of chemotherapy, since her last round is on December 30th. So, with Christmas music cranked, my brother, my mom and I put up her Christmas tree.

Unfortunately, the magic of those few moments soon wore off and she was back to feeling pretty miserable soon after, but at least her tree stands tall in her living room, beautifully lit and a reminder that soon the season of joy will bring her much reprieve from the doctors, IV's, nausea, vomiting, aches, pain, weakness, baldness and surgeries. Soon, life will return to a new normal. She will be a survivor. Her hair will grow back. Her breasts will be reconstructed and she will be able to do all the things she once did - and more!

Yes, Christmas really is right around the corner and this Christmas brings with it even stronger promises of new life, mercy and peace.

Tuesday, October 11, 2011

My mom lost her hair

We knew the journey would become more difficult before it got easier. But no matter how much you prepare yourself for it, you are never prepared.

Last week my mom lost her hair. It was a hard night. I knew the call was coming but we put it off as long as we could. She called and said she had lost a fairly large patch and it was time. I went over and helped by removing all my mom's hair by simply running my fingers through it. Hair came out by the handful. It was upsetting but I kept my poker face on and we kept moving forward. I know this was an extremely emotional thing for her. Words simply cannot express the sadness in this experience.

Friday it was chemo day again. By Friday night she was sick. It hit her so much harder this time. We have been battling nausea and vomiting for days. We have new drugs to help but with new drugs come new side effects. Some make her so sleepy, making her nights so much more restless. Some give her massive headaches. Some make her groggy and drunk feeling. Some give her strange dreams. None truly make her feel that much better. Only time will do that.

I can't even begin to tell you how hard it is to watch someone go through this and not be able to really help them. Sure, we all do what we can. My dad takes her to all her appointments, sits with her as she has chemo, helps her during the nights, making sure she doesn't miss doses of medications. My brother cooks dinners and keeps up with a lot of the laundry and cleaning. I keep her medications in order, make sure they are on a workable schedule, put individual doses in bags with days and times she needs to take them so we have a fighting chance of staying ahead of the pain and nausea. I watch movies with her, take her out for drives in the car when she's going stir crazy but only time will truly make this go away.

The last few days have been rough. She is sick and there is absolutely nothing we can do to take that sickness away.

Tonight, I feel sad. I want things to be normal again. Cancer changes EVERYTHING. Life is no longer the same and while I know this is temporary and we will have life again - it feels like we will never, ever experience life as we knew it. I know it's just been a rough day and tomorrow I'll wake up, go to her house and we will start the day with hope and strength again. But tonight, I'm worn down, I'm sad for my mother and I really can't wait for chemo week to be over.

Thursday, September 22, 2011

And the Fight Begins

At first, immediately following chemotherapy, we thought she may make it through pretty easy. On Saturday, she felt good. We made a really quick run to Publix. On Sunday, she felt ok, we had brunch at Too Jays and then shopped at a crafts store.

Monday, she went in for a shot. It's a shot to force her body to make white blood cells again. On Tuesday, she felt ok but by Tuesday evening pain was setting in. Bone pain. They warned her of this.

Yesterday, the pain intensified and she was fearful of what was to come. She had been told she may feel as though an elephant was sitting on her chest and not to be concerned about heart attack if that were the case. She took her pain meds regularly around the clock and she fought off nausea.

This morning, she woke up and the pain was so bad she was in tears. Her body hurts right now. Most of the day we tried to stay ahead of the pain, alternating ibuprofen with hydrocodone. However, the evil beast stalked her and would creep in when the hydrocodone started to wear off. A little after 5pm her pain level was a 10. It came on suddenly and we were an hour away from time for her to take hydrocodone. My mom has a high pain threshold. She is a trooper. But this pain had her in tears. I gave her the pain pill early and I called MD Anderson. It was after hours at that point and I got the answering service. The on-call doctor called us back promptly. When I say promptly, we literally received a phone call back within 5 minutes!! He isn't a doctor we knew but he was so kind, so warm and so helpful! I explained the alternating of the meds, the dose of hydrocodone she's currently on and asked him if we can increase it by either doubling at a single time or shortening the time between doses. He said she could do either! Which ever worked best! Oh thank goodness. . .relief!

So, we have increased her doses of the hydrocodone to once every four hours and increased her ibuprofen to 600mg every six hours. Heat helps, so I ran out and purchased an electric blanket (which gets some interesting comments when purchasing it in September in Florida). I also found this moist heat neck wrap heating pad that looked like it would really feel good. She is having pain up her spine into her neck, so it seemed like something that might give her some comfort.

We sat down tonight and went through all of her meds, placed doses and times in pill bags and prepared for the next few days of fighting through this pain. I think today had to be the worst and tomorrow will be better. It WILL be better.

Friday, September 16, 2011

Chemotherapy - Day 1

My day started like any other day. I woke up, put on a pot of coffee where I stand and wait the three minutes (benefits to owning a Bunn Coffee Maker) for it to finish. Some mornings, like this morning, it is the longest three minutes of my life. I grabbed a cup, took Annie, our yellow lab out of her crate and went to the back patio. I sipped my coffee with my cell phone in hand texting mom. We text a lot in the mornings. The texts are filled will reports of how nights went, how much or little sleep we each had, updates on each other's dogs and of course, a few Michael jokes.

This morning Michael was in a good mood but we knew he would not be pleased as he would not be joining us this time for the trip to MD Anderson.

Once the children were rushed out the door after slightly intensified morning bickering (all three had flu shots yesterday which did not make for the best of moods) I rushed to get ready. In a matter of a few minutes I was out the door to my mom's to pick up her and dad to go to the hospital. Mom's port was already covered with EMLA cream - my dad can make a damn good nurse at times.

We arrived at 10am. We went to the second floor at first only to find we were in the wrong place and had to go to the fifth floor. A quick elevator ride and we were in the right place. My mom was a bit tearful which in turn made me tearful. Dad was anxious but doing his best to put on the calm, game face to be strong for both mom and me. We were taken to a room with beautiful wood (looking) floors. The nurse that met us was both cheerful and informative. The amount of compassion this woman possessed in her body would have made St. Jude proud. Couple that with intelligence and charm and she was the epitome of a registered nurse. She was the kind of nurse I can only hope to be some day. She spoke to mom about what she would be doing. First removing the EMLA cream, cleaning the port site and then using a longer needle than what may be used in the future (because of current swelling from the surgical incision that is still healing). She explained that there is a "freezing" spray that is often used but she has heard mixed reviews of how well it works - so suggested mom try it with just the EMLA cream this time and if it is too painful we could go for using the freezing spray next time. The cream had been on for well over an hour and had done its wonderful work in numbing the site.

The lovely nurse skillfully placed a needle and catheter in the port. Upon the needle stick my mom winced for a moment, raised her foot in the air in pain and then it was over. She said it felt very much like getting a shot or having an IV and that the anticipation was far worse than the actual event. Once connected, there was no pain at the site. Next the nurse drew some blood from the port, added a bit of saline, provided detail down to the little caps they placed on the tubing being full of alcohol to prevent infection and promote the utmost cleanliness, etc. Once blood was drawn she took us to the chemo room.

The chemo room had a wall of windows. We met another nurse who was busy tending to three other patients. My mom took her seat and the nurse came over to speak to us about what would be taking place. First, labs on the blood that was just drawn to measure her white blood cell counts. She explained that for this time the anticipation is that they will, of course, be in normal ranges. However, next time the counts will be done and must fall into a certain range otherwise chemo may be placed on hold. It would take about an hour to get the results back and then they would start her pre-chemo cocktail. This of course has meds to prevent nausea. Those run for about 30 minutes and then the first of two bags would be hung. The first bag was a medication that she advised may cause some heavy side effects and to let her know as soon as mom felt the least bit sick or different.

With a bit of anxiety as it started we sat and waited. I read a book. Dad ran to get us all some coffee. Mom watched some tv and then read a magazine. Nothing really happened. A cookie lady came around with fresh baked chocolate chip and peanut butter cookies. Mom and I had a cookie and sipped coffee. Then they gave her a boxed lunch. Still nothing. Oh thank goodness, NOTHING!

She had a small hot flash in the middle but that was really the extent while the first bag of chemo ran through the port into her body. It took about an hour.

Soon it was time to hang the second bag. It would also take an hour to run. Again, mom had very mild side effects. With this one the inside of her nose burned like she needed to sneeze but couldn't. She felt some slight congestion, but that was it.

Soon we were back in the car and on the way home. We stopped at CVS to grab a few last minute things and then that was that. We got back to her house around 3pm. My kids were getting off the school bus as we pulled up. Dad took mom in and got her settled, she was still feeling ok. I ran to the store with the family. We grabbed groceries for both houses so there would be plenty of fresh fruits, veggies, lean proteins and snackies. I had planned on fixing some chicken and rice for dinner but time slipped away so we all settled for some fresh deli roast beef (or turkey) subs made at home.

With chemo it's extremely important that mom only eat fresh fruits and vegetables that are cleaned and prepared in her kitchen. Nick dropped me off at mom's house and he took the kids and our groceries to our house once we unloaded what needed to stay at mom's.

I cleaned fresh lemons, limes and oranges for pitchers of water. I scrubbed them with antibacterial soap first, to make sure any germs living on the exterior of the fruit would not be passed into it with each slice. Mom and I joked about how I was bathing the watermelon in her sink. Soon her refrigerator was stocked with some easy to grab, healthy foods.

I left her feeling well. I can't even begin to express the amount of gratitude for everyone that has been checking in on my mom. Today really wasn't the day we anticipated. I know she isn't out of the woods yet for chemo illness but we are so, so very thankful that she didn't have any sickness today following her first treatment. We can only hope the poison which has been infused into her body will continue to show mercy on her body and they will all be this good.

Unfortunately, I do think this honeymoon will come to an end and anticipate a call in the middle of the night or in the morning that she is ill. When that happens (I'd love to say "if" but I don't think it's realistic to think she will go through chemotherapy without sickness - but it MAY happen - we'll see) anyway, when it happens we will cross that bridge.

She is one strong lady. I'm so very lucky to have her as my mom.

Saturday, September 10, 2011

The Wig Saga

As I posted on Wednesday, mom and I went and purchased a wig in preparation of the start of her chemotherapy next Friday. Unfortunately, the wig shop we went to was not an approved provider by Aetna, her insurance company, which meant that if we kept that wig, we would not be reimbursed for the $372 charge. Normally, I would chalk it up to our own ignorance of not checking this prior to purchase; however, we were provided an insurance code in the wig shop and told we could call the insurance company with the code for reimbursement - implying that the shop was a provider for Aetna. We even asked at the shop before the purchase if we should call Aetna while we were there and we were told, "oh no, you can do that when you get home."

So, on Friday I phoned the owner of the shop. I know she is the owner of the shop as it says she is on the receipt and on the website. However, when I spoke to her on the phone she denied that she was the owner stating once that she was "just a stylist" and then saying she was "just the manager" - but she IS the owner. This only added to my feeling that something very unethical is taking place in the shop. After four phone calls, all which she stated I would have to wait until Tuesday to resolve this issue, I decided something more had to be done. She told me she needed to wait until she could speak to this associate, as she also assisted with the sale and wanted to hear from her "what she told us."

At that point I wrote the following letter to the Better Business Bureau:

Better Business Bureau
1600 S. Grant Street
Longwood, FL 32750
Fax: 407.786.2625

To Whom it May Concern,

I am writing in response to an experience with the local business Premier Hair Enhancements located at 7600 Dr. Phillips Blvd, Orlando, Florida 32819. On Wednesday, September 7th, the day after finding out my mother was diagnosed with Stage IV Breast Cancer and must begin chemotherapy on Friday, September 16, 2011, we visited Premier Hair Enhancements with a prescription from MD Anderson Cancer Center. We were assisted by Sarah Park, the owner per the company website (please see attached). She fitted my mother with a wig described as a “Medical Wig” for $372.74. I charged this item to my Visa debit card. She provided an insurance code (A 9282) and said we could call Aetna with prescription for reimbursement.

However, upon calling Aetna, my mother was told that this shop is not a provider in the network and they will not reimburse the cost. I phoned the shop today, Friday, September 09, 2011 – only two days after the sale – and I am told she will not refund the cost, even though she misrepresented her affiliation with the insurance company. She also informed me that she is not the owner of the shop, only a manager – yet on the receipt I was given she is listed as the owner (see attached) as well as the website. She went on to tell me she would need to speak with another associate who also assisted us with the purchase so she could understand exactly what we were told – to determine the refund and that this would have to wait until Tuesday.

Mind you, my mother is a stage IV cancer patient. She begins chemotherapy next week – scheduled for surgery on Monday for port placement. We were being proactive to take care of this at once so she has the wig in preparation of losing her hair immediately following chemotherapy. Time is of the essence.

I find these business practices to be unethical. Ms. Park, being in the business that she is in, must deal with cancer patients on a regular basis. She must have known to advise us to speak to Aetna first (or even that Aetna would not reimburse if we purchased the wig in her shop). Rather than offering that level of support, she misled us into believing we would be reimbursed by insurance, by providing an insurance billing code and making the sale.

I will be contacting additional organizations regarding this business practice as I do feel the ethical and right thing to do in this situation is for Ms. Park to authorize the refund for the unused wig so we can purchase a suitable wig from a shop that is an approved provider. I believe other organizations that provide information to cancer patients need to be informed that Premier Hair Enhancements uses unscrupulous business practices, exploiting patients with the very illness they are seeking treatment from to make a “final” sale that can then not be reimbursed by one of the largest insurance carriers in our area.

Should you wish to have more information regarding this matter, please feel free to contact me at the phone number listed above.

Thank you,

My plan was to fax it to the shop, providing her an opportunity to see the complaint prior to my sending it. I called Ms. Park as the fax number was not working. Her response was, "why can't you just wait until Tuesday!!"

I again expressed that we simply don't have a lot of time. If we must seek out another wig at the Aetna approved wig store, we needed to go this weekend to do that. Additionally, we already have nearly $400 tied up in this wig that won't be reimbursed and we will still have to wait for reimbursement from the "approved" wig. We can't wait for her to make up her mind on if she is going to do the right thing, or not!

I attempted to fax again, with copies of the receipt and website. It didn't go through. So, I decided I would just pay the shop a visit on my way home from work and hand deliver the letter (and evidence gathered that she has lied to us about who she is).

At 5:45pm I walked in to the shop. At first she didn't recognize me but then immediately she appeared like a deer caught in headlights - a look she had several times over the next 45 minutes.

"I just thought I would hand deliver my formal complaint to the Better Business Bureau since your fax machine is not working," I said.

"I just don't understand why you can't wait until Tuesday for this to be resolved."

"Ma'am, with all due respect, my mother has a port placement on Monday. She has a plethora of other appointments next week, we don't have time to wait on this. She starts chemo on Friday, we need the wig before Friday and we can't get the wig that is reimbursable by insurance until we have this settled. That is why we can't wait!"

"I need to talk to the associate that helped me with this sale. I need to know what she told you."

"I told you what she told me. She gave me this code to provide to the insurance company. That alone implied that you are an Aetna provider. She also told us to go home, call the insurance for reimbursement - again, this made us believe you were a provider and we would be reimbursed. You, ma'am, are running an unethical business that takes advantage of women suffering cancer. You ma'am are doing something very, very wrong. But don't worry, I'm copying the Insurance Commissioner on my letter, I'm quite sure he will be interested in this situation. Additionally, I'm copying MD Anderson Cancer Center so they may remove you from their list of possible wig shops. I also think Susan G Komen of Central Florida and the women currently fighting for their lives need to know how you take advantage of their sisters who are just starting their journey."

"I am a good Christian woman. I have a picture of Jesus on the wall." She pointed to a picture of Jesus and a Crucifix hanging on the wall in the rear of the shop.

"Well, Jesus Christ would return this money!"

"Are you saying I'm going to go to Hell over $400?"

"Ma'am, that isn't my call. I'm just saying that there is a right thing to do and a wrong thing to do in this situation. Jesus Christ would do the right thing."

"I'm a business owner. I am running a business. If you were in my shoes what would you do?"

"Umm, obviously, I would give the refund and take the wig back."

She then danced around needing to speak with the associate again. She said that she had tried calling her all day but hadn't been able to reach her because she was at the hospital because of a lump in her breast. I pray this was only an excuse and the woman isn't facing this same battle but if she is, I pray she is met with far more compassion than my mother has while seeking a wig.

"Why don't you go ahead and give her a call now, while I'm here in the store. If you get a hold of her we don't have to wait until Tuesday, correct?"

Again, the deer in the headlights look. She grabbed her phone and called the associate. For the life of me I can't remember the associate's name so for the sake of using a name, I'm going to call her Sue.

"Sue, are you home? Are you home from the hospital?"

She immediately told the story. Sue confirmed that she provided the insurance code but told her that code is only used by the insurance to say yes or no on reimbursement. I said that is not what we were told, if it had been we would have called BEFORE purchasing the non-exchangeable, non-refundable wig. The owner then decided it was a good idea to have me talk to Sue on the phone.

"I don't understand why I need to be in the middle of you and your associate. You are the owner, you make a decision. Right thing? Wrong thing? You must decide if you run an ethical, moral business or not!"

I get on the phone with Sue who is obviously upset that the owner is placing her in this position and blaming her for the entire mix up. However, it was the owner that pointed to the desk and told Sue to give us an insurance code on the day we purchased the wig.

Finally, the owner opened the drawer, pulled the receipt out from the credit card purchase on Wednesday, asked if it was us and then ran a credit through the machine.

"I'm not going to hell for $400."

She also wouldn't accept the wig back. My intent was not to get the wig and the money. In fact, this was about so much more than the money. It was about a place of business exploiting women (and men) in their darkest hour. It isn't right.

I still plan to report this shop as something must change. How many others have gone there, been told they can seek reimbursement from, only to find out they are stuck with a purchase that cost them hundreds of dollars? It's just not right.

But, Michael stays. . .and that is a good thing.

Wednesday, September 7, 2011

Michael Jackson

"If I am going to have Dolly Parton boobs I want Dolly Parton wigs too."

This was a statement made in the car on the way to the wig store. It was of course said in jest by my mom, and set the expectation of a jovial tone for wig shopping. We decided that we would not normally be going wig shopping, ever, so we might as well make the most of a new experience. We drove across town to a small boutique that came recommended by a survivor. We walked in the door and the overall feeling of the shop was very classy. We were warmly greeted by a lady at the door and we explained that my mom would be starting chemo next week (as early as Tuesday) and were in need of a wig. She asked another girl in the shop to assist us and my mother was seated in front of a mirror.

The assistant immediately grabbed a wig that was about the same length as my mom's hair. It had a bit more curl in it than my mom's and was really BIG. Mom put it on and she and I both giggled a bit. It just wasn't the right one. The ladies helping us didn't really crack a smile. I know they were just being extremely respectful and they were extremely kind. But, we were trying to make the situation light.

We eventually found a wig that was the right color and length. It does have a slight curl, which mom's hair doesn't have but it is a close enough match to work. We also went to MD Anderson and The American Cancer Society to see what they had. Both were helpful resources and mom did get a few scarfs/hats that should be comfortable.

Once home, we discovered that the head my mom's wig sits on has the face of Michael Jackson. I think it's the nose. The wig is now known as Michael Jackson. The jokes started coming. . .

Mom's on her chemo bed, ill and asks a helper, "Please bring me Michael Jackson."

Mom's riding in dad's convertible and Michael Jackson blows off her head. She shouts behind the car, "Don't run over Michael Jackson!!"

However, the funniest part is the fact that Michael now sits on top of the refrigerator. Mom is afraid Isaac, their black lab also known as "King Lab" because of his girth, will grab it and chew it up if it's not placed high up somewhere. We teased him a little with the wig. First mom put it on. He barked. Then mom made it dance in the air. He barked. Then mom put it back on the refrigerator next to the dog treats and I pretended to feed Michael Jackson a dog treat. Isaac was extremely concerned.

Today wasn't a terrible day. We shed some tears and we've shared a few laughs.