Round 2 of Chemo

I (Shannon) was away just as Shari was completing Round 2 of her Chemotherapy treatment, so here is a recap of her experience in her own words. This is a post of an email that Shari sent to update friends and family on her status.
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Dearest Friends and Family,

I hope this email finds you all well. I appreciate all the emails, blog responses and phone calls that I have been receiving. The love and support that has rallied around me and my family has been unbelievable and the word of Thank You sometimes just doesn't seem like enough. So without knowing what else to say, Thank you from the bottom of my heart. We are so grateful.

I decided to write to everyone now that I have completed Round 2 of my Chemotherapy Treatment. Shannon is away for a couple of days and I thought that I would like to send out an email update myself. I will ask her to add this to my blog as well just in case I miss anyone. Also a special Thank You to Shannon for updating my blog and keeping everyone informed. Just in case you need the blog address again it is www.daringtoshare.blogspot.com

Update on the port that was implanted two weeks ago, it seems to be adapting to my body very nicely. There is still a little discomfort but on the most part it is healing very well.

Light to the targeted therapy (oral meds), Nexavar, and the ongoing rash reaction that I have been having. The reaction was so bad that we held the meds for 7 days and restarted this past Wednesday evening dose only and I had another reaction, so we decided to hold it again. We reevaluate the situation at my appointment on Friday and decided to restart at a much lower dose so that my body can adapt to it more gracefully. I had been taking 2 pills 2 times a day and now I will be taking 1 pill a day. Wait for my body to adjust and try to add more. I started last night and it seems that I have not had any reaction. So far so good.

So yesterdays treatment was unbelievable. Since I now have a port there was no accessing my veins for an IV, it would be my first experience accessing the port instead. I was a little nervous of the unknown but was very excited as well for not having to use my veins. My dear friend Jann, lovely Alice and a surprise visitor Leah, the best buddy anyone could have from my DSS class were all present with me. The nurse got all her stuff ready, draped me, cleaned me all up and said "OK, take in a deep breath and exhale and I will insert the needle." I said OK please wait one minute and I took in a cleansing breath and said "OK now I am ready". She said again, "Take in a breathe, blow it out, here we go, OK all done." I said, "All done, that's it." She said "Yep that's it." And then I screeched, "That's it, all done, yea!!!!" I was so happy. It was so easy, and I feel so blessed. The whole time that the infusion was going in I felt nothing. It was terrific.

The whole day takes a really long time but for some reason yesterday didn't seem as long. I still got high as a kite and felt a little woozy and high leaving the hospital but I felt great. I eat lunch, rested and had great conversation with friends. What more could anyone ask for.

Today, I feel a little under the weather. A little nauseous, a little tired, and a little weak. But all in all I am fine. The next couple of days will be more challenging for me and then I will start to feel a little better. By week 3 I will have my energy back and feel like me again, just in time to start again.

This week my dear friend (my wife) Max or Crazy Aunt Max, that some kids call her, is here with us from Boston to take care of me, support Tom and care for Daria as well. We are so grateful to her for being here with us and loving us just the way that she does. Thank you Max for making it possible to be her with me this week and for just being you.

Lastly, if you would please continue to hold my vision with me that I am "The Miracle". I am holding for the disease to shrink and be gone from my body completely. Please continue to see me strong, healthy and vibrant as I continue on my journey of complete health.

Thank you for being apart of my life. I feel so grateful and blessed.
God Bless us all.
Loving,
Shari

Rash, Rash, Go Away!

By the end of last week, Shari had started to experience some pretty unpleasant side effects from the targeted therapy drug that she is taking. As of Friday, the body rash that Shari was experiencing had spread and soon covered 95% of her body. Shari has described the body rash as being very similar to having a bad sun burn (And, as a melanoma patient, the strange irony of this has not been lost on Shari at all!). At first, her skin was red and raw and blistering in places. She was having significant difficulty in walking because even the bottoms of her feet were effected. Her skin then started to look purple, just as a bad sun burn would look. And, then her skin started to peel.

Shari and the oncologist's office decided late last week that Shari would stop taking the targeted therapy drug temporarily until the body rash started to calm down. Shari discontinued use of the drug over the weekend and touched base with the office on Monday. They decided that her skin had not healed enough to begin the drug yet and decided to wait until Wednesday. Shari did take her first dose of the meds on Wednesday, and overnight last night was greeted by the full body rash having returned :-(

She is not taking the meds today, but is suffering quite a bit both from the rash as well as from a night of fitful, poor sleep. Around 3am last night, Shari was in significant pain and quite itchy. She took some Benadryl and also tried to put ice packs on her feet to numb them because they hurt so badly. Remember that tomorrow Shari has her second round of chemotherapy and needs all of the energy reserves she can have, so this episode is poorly timed. Shari will be speaking with the oncologist tomorrow regarding how they are going to proceed with the targeted therapy given her reactions to the drug. One choice would be to take a smaller dose of the drug and hope that as her body got used to it, she could ramp up to the higher dose over time.

Also, this weekend, Shari decided it was time to try out a new hair cut :-) Shari had started to experience some hair loss, so she made the decision to "buzz" her hair to make the hair loss process a little more manageable. Shari's friend Mair came to the house on Sunday to complete the next step in her hair transformation. Shari said that she shed some tears but mostly had laughter. She was listening to Indigo Girls - Right of Passage ("Galileo") as Mair started to buzz it all away. That song is really important to Shari because of a personal meaning from a class that she took a long time ago.

Here is Shari before:


And, here she is after with her "buzz" cut:

How awesome does she look?!?!?! So beautiful!

Shari told me today that her hair is starting to fall out more regularly now, and so she may choose to buzz her hair even shorter. I'm sure we'll have more pics to share when that happens. Shari has chemotherapy scheduled for tomorrow. Please keep her in your thoughts and prayers! We will keep you posted.

Peace,

Shannon

Update on Shari

Hi everyone-

Shari is doing fairly well this week. She has experienced some fatigue, bone pain, and some rashes on her body in the last 10 days since her treatment started. However, all of this has mostly been manageable for her and are all expected side effects.

On Wednesday, Shari went to the hospital to have a port put in her chest. From here forward, her medicines will be administered through the port, instead of having to give her IV's every time she goes for treatment. She has had some discomfort and soreness at the incision sites, but is overall doing well from that procedure.

Shari's next chemo treatment will be next Friday, November 21st.

Please keep Shari in your thoughts and prayers and keep holding her vision that she will be a "miracle" and eradicate this cancer from her body!

Best,
Shannon

Touched By An Angel...

For anyone who may be doubting, there are still alot of really great people in this world...People who will go out of their way to assist a stranger for no other reason than to be nice and to help someone out. Shari met one of these selfless people two weeks ago.

The weekend before the historic presidential election, Shari was at home, preparing to cut her hair before her chemo treatment started a few days later. Out of the blue, her front door bell rang. Shari answered to door to find a friendly campaign worker canvassing her neighborhood reminding people to get the vote out! As he talked to Shari, she mentioned that it was going to be hard for her to make voting work in her schedule (she needed to leave for the hospital that morning by 7:30am for her first chemo treatment!), but she was going to try her absolute hardest to make sure she voted. She was especially concerned by the prediction that lines would be long at her polling place, and she wouldn't have the time to wait.

After hearing her story, this kind man told her that he wanted to help her out. So, he told her that he would go to the polls early on Tuesday morning and wait in line for her so that she could pull right up to the polls when they opened at 7am and take his place in line and vote. The man gave Shari is cell phone number and told her that whether she came, or not, he was going to be there waiting in line for her.

The night before, the man called Shari and reiterated his commitment to waiting in line for her so she could vote quickly and get on her way to the hospital. Shari still wasn't sure how her morning would go and if all of the timing was even going to make any of this possible, but she surely appreciated the man doing this for her.

Tuesday morning, Shari was on her way and called her new friend to let him know she was coming. As promised, this man had been waiting in a long line and when Shari arrived, he gave her his space in line. He then proceeded to go all the way to the back of the line to wait his turn to vote.

This seemingly small gesture made a huge difference in Shari's life! You never know how impactful your kindness can be and Shari was so appreciative that this "voting angel" was sent to her!

Shannon

Empowerment!

Once Shari chose to do the chemotherapy and targeted therapy treatment that began this week, she knew that losing her hair would become a reality at some point in this process. Shari has embraced this reality and decided to be proactive about it!

Shari wanted to cut her hair short in anticipation of the chemo side effects, before she started treatment and started to possibly feel ill. On Sunday, her dear friend Mair cut her hair into a fabulous new short style! Shari looks beautiful.

Shari, before

Shari, after

Doesn't she look fabulous?!?! In other "hair" news, Shari and her friend Jan started the process of wig shopping last week. They went to a boutique in West Chester and were introduced to a HUGE variety of options she has for head coverings, including wigs, partial hair pieces, hats, scarves, and headbands. Shari found a few things she really liked there including a wonderful wig that she hopes she may be able to get in the coming weeks! Check out her pictures.

I love this shot of Jan and Shari together! Don't they look adorable?!?!

That's it for tonight. Tomorrow I'll update you on Shari's wonderful voting story. There are some really wonderful people in this world!

Shannon

We Interrupt this Regularly Scheduled Programming....

Hi everyone!This is Shari's friend Shannon. As many of you know, Shari has been diagnosed with melanoma and has recently found out that the melanoma has spread to her lung. Shari began a chemotherapy and targeted therapy treatment program as of yesterday to fight the melanoma. We know that Shari will be successful in her fight, but she can use all of the support that she can get along the way.

Shari has asked that I act as a communicator with all of you, her loving supporters, as she goes through this process. This is a job I will happily accept. In light of this, I have "hijacked" Shari's blog and will occasionally update you here with her progress.

Shari provided an update yesterday after her first chemotherapy treatment and here is what she had to say:

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Today, Tuesday, November 4th I started my first chemo and targeted therapy treatment. And after 1 small issue in the morning (I was never scheduled for an appointment in the calendar for today's treatment) and 1 small issue once I started the chemo (I had a small rash reaction that made them stop the meds and check with my Dr. that took about 45 minutes before receiving clearance to continue) I think the day went smooth and easy. I was very tired and floating around from the Benadryl that they gave me and then got very high from the steroids. The combination was overall good.

It has been almost a 12 hour day since I left my house and got back home but (I DID VOTE, YEA!!!!! can't wait to share that story, another time) I am tired and ready to relax, get out of my clothes and retire for the night.

Thank you for all your support and love. I will update often and keep you up to date on my progress. If there is anyone that I have missed please let me know. And you are welcome to share my "Miracle" progress with anyone that would like to know. My oncologists vision is to maintain and stabilize the disease and I would like to take it a step further I want to be "The Miracle" to shrink the melanoma and it be gone from my body completely.

God Bless us all,
Light, love and laughter,
Shari
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Please keep Shari in your thoughts and prayers. I will update here regularly so please check back!

Shannon