Phil's Battle with Multiple Myeloma

Where do I begin?  I have known Phil since the 7th grade.  All through out high school he was a constant presence in my life.  He is the brother that I never had, and because he is family to me, I am going to do whatever it takes to help him.

His wife, Jen, wrote an account of what Phil has had to endure and what he still is facing. 

"Phil was diagnosed in January of 2005 with Multiple Myeloma. He had a tumor in his sacral bone (see diagram below). He received chemo and radiation at that time. The radiation expanded the tumor in his sacrum and cracked the left side of that bone. So they went in and did a sacral (the bone at the end of your spine/ass) reconstruction. He has a titanium rod, nuts, and bolts. The also took one of his ribs and put it there. He had kyphoplasty to vertebrae T12 (middle of back) because the cancer ate away at that bone and it collapsed. So they filled it with cement. C2 on the spine at the bottom of skull also was eaten by cancer and collapsed so he had a spine fusion surgery. They took titanium and a part of his rib again and fused C1 to C3 in which he cannot look to the left to far.
He has had radiation to C2, T10, T12, Sacral, Femur, Foot. He had a bone marrow transplant in November of 2009. Which he spent a month in hospital for, and the transplant was suppose to last a few years. It lasted one year. Then the cancer came back. He has several "spots" all over. During this time he has taken dexamethasone (a steroid) in combination with the chemo meds. A side effect of it is called avascular necrosis. Which means dead bone. So the balls of the hips and shoulders have dead bone on top. This causes him terrible pain, inability to walk distance, which he will need bilateral hips and shoulder replacements. At this time they are stable, but in the future it will require surgery.He has tried injections there but with little relief. He has had numerous MRI's, Xrays, bone marrow biopsies, PET scans, lab work, and medications he takes. He lives in constant pain, and suffers with depression. He has been unable to work for the last 3 years. He was without a pay check for a year and a few months before disability approved him. I work weekends but take time off to care for him sometimes. He has a spine surgeon, orthopedic Dr, neuro surgeon, pain management Dr, oncologist Dr, and oncologist nurse practitioner. He can't sit, stand, walk or stay in one position for very long due to pain. He currently is on Revlimid and Cytotoxin chemotherapy medications."



Post Surgery for Sacral Reconstruction



If I am correct, this is after his bone marrow transplant



What is Multiple Myeloma? 
Multiple myeloma is a cancer of the plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections. In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count.


Phil is going on his sixth year (including his short time in remission) in battling this cancer. He is considered terminal because as of yet, there is no cure. He was 33 years old when he was diagnosed.  He will turn 40 in June. He is a rare cancer patient for this type of disease being one of the youngest diagnosed with it.
Phil has not been able to work for three years.  Phil has worked since he was 15 and through out most of his adult life he has held down two jobs at the same time to support his family. He has always prided himself in being the provider for his family. His generosity has known no bounds. He has helped people around him by being Mr. fix-it and in general would help out anyone in need. Now HE is the one with the greatest need. It hurts me to know that he is so frustrated and depressed because he HATES not being the one to support his family. 

He has an amazing family.  A nurturing and kind hearted wife, that has done everything within her power for him. Jen is a registered nurse and only works on the weekends because, during the week she is busy with taking him to his chemo treatments and doctors appointments and taking care of him. He does receive disability but most, if not all, of that money goes towards his medical care. Jen's paychecks go towards everything else. There is simply not enough each month.


He has two amazing and beautiful daughters, Heather is in her last year of college and will soon be a teacher, Given her generosity and gentle quality much like her mother, I am confident any school will be lucky to have her on board. Megan is in her junior year of high school. She is a lot like her dad. She was just a little younger than my own Katie when her dad was diagnosed with this horrible cancer.  That breaks my heart. No child should have to witness such cruelty. I know from experience, my own father was battling cancer (Hodgkin's) when I was five.  Even being that young, I have vivid memories of watching him struggle.





Receiving Chemo - On Megan's 16th Birthday


Which is why I am making a plea on their behalf.  I have had Jen set up a paypal donation account so that anyone can help them out.  I know that Phil is in need of a lift chair, because his hips make it difficult for him to be able to get up from a sitting position, and that is not covered under their insurance.  They have to come up with $1000.00 out of pocket for this chair.  Those funds are just not accessible to them.  This chair is a must!

I am asking you for help.  If you are able to, please donate to Phil's battle with Multiple Myeloma.  Whatever you can spare will help. Anyone willing to donate financially is just the first step.  I am also in need of businesses and/or individuals willing to donate their services or products for a silent auction fundraiser.  If you are interested please contact me at mnetsrek@yahoo.com .  Please put fundraiser in the subject line.

If you live in Ohio, preferably in or near Medina, Cuyahoga or Geauga County and would like to donate your product or services for more fundraising events being planned in the near future, please do not hesitate to contact me.  My goal is to make 2011 an easier year financially for my brother and his family. Reducing the stress for him is a priority so that he only has to concentrate on beating this cancer and not stress about his family needs financially.

**** If inclinded to donate. Please use the donation button on the top right hand side of tool bar.*** Thank you so much!

He is the Reason for the Season!

For unto you is born this day in the City of David a Savior, which is Christ the Lord. And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.' And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men.'"

Christmas Cards with a personal touch...

For a while now I have been contemplating about starting a family tradition of sending out personalized Christmas Cards.  Something that I can include the whole family in, including our pets.  My parents did this one year and they included their dog, Peanut, in on it and it turned out beautiful. 

The selection of pictures you see are done so beautifully and professionally.  My favorite style resembles the postcards.  The postcard style in my opinion would be easy to display and would take up less room, when combined with all the cards one receives over the holidays.  My mom has always hung our cards around the front door and windows, so that our tables were spared the clutter.  I have done that in my own house through out the years. 

Over the years, I have been so disappointed in the selection of Holiday cards in the stores.  Even card shops.  To me spending just a little bit more for something so personal is well worth it.  You know you are going to like what you are buying, and not having to settle for the most decent ones out of a limited selection, and mumbling to yourself how much better you could have done on your own, as you walk out the store with the mediocre run of the barrel selection.

I could always make my own but the cost of getting the software and selecting the right paper and the hassle of cutting.  Never mind, it would be to time consuming and time is the one thing that I do not have enough of.  I think leaving it the professionals is the best choice.  Let the experts do what they are good at right?   

So, next year will be the year that I will have my priorities in order, and get the family together for that perfect picture or maybe just select a few rare family moments, and treat my friends and family to a professional and perfect Holiday card.

The Best Christmas Song

How Many Kings - Down Here

The Singing Christmas Tree...

Has become my birthday tradition for the last 4 years.  My mom has been buying my family's tickets and she always picks my birthday for us to come and enjoy.  My mom is also apart of the Choir that is the singing Christmas Tree. 

"The Singing Christmas Tree is an annual music and drama production written & directed by church members, and accompanied by an orchestra. The performance features a multi-story tree, adorned with talented choir members. With the various musical pieces, the tree comes to life in an awe-inspiring light show. In addition, each year's drama performance is new and spectacular, but with a special message." As quoted in the News Herald.

My mom is in the first row, 8th head from the right. 

Our tickets are for 3pm today which is good since I don't have any evening dresses that fit right now. Normally the matinee performance is a casual dress code and  besides, Katie's Christmas Parade with her Junior troop is this evening and we don't want to have to change at the church and stow our formal clothes in the car.  Both events are in Downtown Sarasota so once the performance is over at the church, we will probably get something to eat before heading over to the meeting spot with the rest of the troop.  Sarasota's Christmas Parade is an annual event and the girls enjoy handing candy out to the kids that come down to see the parade.
What is so special about the Singing Christmas Tree this year is that in two weeks, they will be traveling to Germany, to put on the performance for our troops that are stationed over there.  There are about 10,000 of our soldiers that will be seeing this performance along with their families.  None of this would not have been possible if it weren't for so many people donating their time for fundraisers and donating money to help with this cause.  Both of my parents are going although, my dad is not in the choir, he will be helping with setting up the Christmas tree.  Wish I could go but that is not an option.

All this and only 5 hours of sleep...

My day started at 4 a.m. this morning.   Woke up to Chris yelling, "What the hell is that?" He immediately jumped out of bed and ran toward the sliding glass door in our bedroom.  As he was opening up the blinds I saw what looked to be fireworks going off in our backyard.  It wasn't fireworks.  The enormous tree in our backyard was swaying so violently, because of the storm, that it was literally smacking the power lines. Every time it would hit the power lines sparks were flying and the popping sound the sparks were making were so frickin' loud that it was making our dogs go bananas.  The only person to sleep through the commotion was Jeff.  That kid can sleep through anything.

Our power kept shutting off and then coming on and it was so freaky how the only light in the house that would stay on during the light show was the hallway light. Apparently that was all the power we were getting until it finally just went black.  Chris called the power company to report the outage and we were told that it only affected 12 houses.  When Chris got an update at 7 a.m. it was up to 150 houses.  All because of the stupid tree.  The power company had to send tree trimmers out this morning to cut back the branches before they could repair the lines.  I think we got the power back on around 9a.m. 

So, being up before the crack of dawn, I decided to get an early start on my day.  I had the Clubhouse at the condo association to do and also one of the residents and then I had to meet a new client and clean her house.  My new client actually purchased a package that I had submitted to our Church's silent auction to benefit the Singing Christmas Tree's trip to Germany in two weeks.  The Silent Auction was in May and since she and her husband are snowbirds they just got in about a week ago.  It was so nice to actually clean a house instead of a condo.  She has a magnificent house on Bird Key.  Very upscale.  I remember what she bid on my package and it took every bit of that bid to clean her house. Of course I don't get that money since it went to the Germany trip but she did give me a tip (which I rarely get) because she loved the way I washed her floors. I use the "Steam It" by Oreck.  That thing is a blessing.  So easy to use.  The amount of steam it generates would make the perfect wrinkle treatment, I kid you not.  She wants me to clean bi-weekly starting in two weeks.  I am so excited to have yet another client even if she is only here for six months.  But that is most of my clientele.  If it weren't for the Condos I don't know what I would do for income for the rest of the year.  I do have to submit another bid for a bar, but I am not sure I will get the contract seeing as how they are paying less for $30.00 a cleaning now.  I would charge at least double. The place is huge and it's a bar. Imagine how dirty at the end of the night the place is.  The cleaning company they have a contract now doesn't get the bathrooms clean and they skip things all the time.  Well... you get what you pay for right? Right! So I am going to be firm on my pricing. After all I have overhead expenses, like Liability insurance, which is not cheap, and I have to pay at least 15% self employment tax and I supply everything that I need to clean.  My price is fair and worth it, in my opinion.