Good evening loved ones! It’s been very busy around our household for the last month, and I am so very sorry about my lack of posts. I promise it has been a very enjoyable, blessed, and loving month keeping our minds busy and spending quality time with so many people over the holidays. I truly hope this message finds you doing well this New Year. I hope and pray you have found happiness, love, and strength in everything you do and everything you surround yourself and your most precious loved ones with. Life is not always easy, but it can be dealt with. It is never too late to forgive, and there is always room for love. You have to learn to let go of anger, stress, and unhappiness. Let yourself enjoy and share humbly what you have experienced and learned physically, mentally, and emotionally throughout your beautiful lives. Love often, and please do not forget to live. Life will pass you by either way, so experience it the way it was meant to- one day at a time with the ability to let go, relax, learn, reflect, and most importantly, with those who make you smile.
It is that stressful (more stressful I should say) time of the season for us again. It has been six weeks since my last scan. We have many consultations coming up and numerous decisions to make. First and foremost, we pray constantly that God’s will is to continue shrinking this cancer to a point of nothingness, or, at the very least, where surgery becomes an incredible and promising option with clear margins. Besides the scan coming up, we may very well be venturing into the unknown again. I am quite possibly reaching the toxicity and maximum efficacy of this chemo regimen (Gemcitabine/Docetaxol). With that said, our last meeting of the minds in Houston we discussed coming up with a definitive plan to treat the disease (radiation, surgery, or some combination thereof). Of course, chemotherapy will always be involved, but we just need to figure out when, where, and what. Fortunately, our list of new regimens is always growing through our own research and advocacy.
Before I go into the schedule for the next couple of weeks, I cannot reiterate enough, as with any illness, it is imperative to be your own researcher. Our medical team of surgeons, oncologists, and radiology oncologists is extensive and superb. However, they are human. Nobody, and I mean nobody, is a better advocate for their own health more than the patient themselves and those whom surround them with love. It has paid dividends for me and many others I know of. Heed the advice of your medical team, but never be afraid to bring information to their attention.
With that said, here is our schedule for the upcoming week(s):
Thursday, January 24: 1130am Consultation with Dr. Chang (cardiothoracic surgeon) at University of Michigan – discuss Dr. Chang’s thoughts on progress, surgical margins, and possible lung surgery
Thursday, January 24: 6:00pm – 9:00pm The Oldham Project’s Annual Gala – Denims and Diamonds
-This wonderful organization took the family pictures of us recently. This annual gala supports their efforts throughout the year, and provides for a wonderful evening for everyone. Date night with my beautiful wife!
Monday, January 28: Travel to Houston – MD Anderson Cancer Center
4:00pm – Blood Draw
6:00pm – Check-in for CT Scan
8:00pm – CT Scan
Tuesday, January 29 – Houston – MD Anderson Cancer Center
8:30am – Consultation with Dr. Ravi (oncologist) – discuss plan and CT scan results
1:00pm – Pulmonary Function Test (PFT) – test the overall function, capacity, etc of my lungs
3:00pm – Consultation with Dr. Swisher (cardiothoracic surgeon) – discuss options and get another opinion from a well-respected surgeon
Tuesday – Wednesday, January 29-30: Travel back to Michigan with POSTIVE news, of course!
Saturday, February 9: 1:00pm – 4:00pm Cycle for Survival: Chicago!! – Indoor Cycling Event
-Cycle for Survival is a national event through Memorial-Sloan Kettering Cancer Center and Equinox Fitness
-Raise awareness and much needed funds for rare cancers, including mine, angiosarcoma
-Click to Donate to Our Team: http://mskcc.convio.net/goto/AngiosarcomaChicago
-ALL funds raised for our team go DIRECTLY to angiosarcoma research; we have a special agreement with Cycle for Survival and Memorial Sloan Kettering
-Any amount goes a VERY long way towards finding treatments and a cure!
-This has been my secret, sincere, and heartfelt passion for the past 3 months.
-Our team has grown to over 26 riders
-Our team (Angiosarcoma Awareness – Chicago) has raised about $13,300 and getting closer to our goal of 20,000! Please help us reach our goal!
-Furthermore, we are sharing the field with 10 other Angiosarcoma teams nationwide
-Collectively, we have a total of 116 riders and have risen over $60,000 – AMAZING!
-ALL donations are 100% tax deductible
-Please email all you can, repost, retweet and help us spread the word!
-Copy and paste this link: http://mskcc.convio.net/goto/AngiosarcomaChicago
-Thank you for all of your love, support and generosity!
*NEW* Saturday, March 2 – Sycamore Hills Banquet Center – Wine Tasting Fundraiser/Benefit
-Due to the growing cost of this journey, my amazing family is hosting a benefit for us
-Doors open at 5:30pm; Dinner
–HUMPHREY WINE TASTING FUNDRAISER FLYER
–MENU FOR FUNDRAISER
– Dear Family and friends,
Attached are the menu and flyer for the Wine Tasting Fund Raising dinner for my cousin, Ryan Humphrey. There may be slight variations in the menu prior to the event.
You will need to call Sycamore Hills to make a reservation and pay by credit card. If you have a group of 8 to 10 people, you can reserve a table, otherwise it is open seating.
We will gladly accept any raffle prizes you would like to donate. Please call Shirley Stepek (586-254-1563) or us (586-463-6098) to arrange pick up of donations. We would like to create a booklet of business cards of the donors. Please provide us with a business card or the name of the donor by February 23.
We will be selling raffle tickets and 50/50 tickets early in the evening and picking the winning tickets between the later courses.
For those of you who have not been to one of these events, it is a lot of fun. The courses are nicely paced and the food and wine are plentiful and very good.
Please reserve early, as there is a limited number of seats available and this is open to the public.
We hope to see all of you there.
This is our schedule. Obviously, I am most excited about Cycle for Survival and my family fundraiser! Cycle is a desire and passion I have deeply acquired to help out, spread awareness, and meet new people! It keeps my mind busy too!
The schedule is short and compact, but there will be a lot of information exchanged and very important decisions made. Among them (and we bring a list to address every time) are:
-CT Scan Results – efficacy of chemotherapy, current staging of disease, spread?, controlled?
-Surgery – complete pneumonectomy (surgical removal of my entire left lung – most likely)
– Sleeve resection – (partial removal of lung tissue to remove tumor and obtain clear margins)
-Radiation – IMRT (traditional photon radiation) or Proton Therapy (new, advanced proton radiation)
-My Prognosis – after one lung surgery and 12 rounds of intense chemotherapy, I want to know what Dr. Ravi’s opinion is on my prognosis given my response and staging
-Additional chemotherapy drugs to be addressed: Avastin, Votrient, TH-302
-Additional therapies to be addressed: immunotherapy, cryoablation, hyperthermia
-Whichever route we take, I will request different tests to help possibly confirm no spread of disease – i.e. bone scan, MRI, etc
-It is imperative to me to have some additional reassurance should we choose such a drastic and risky surgery
As you all know by now, our journey is your journey. We have no secrets from any of you, and we will keep you with us as long as you want to be here. Some days will be harder than others. Some days will be darker than others. However, the good will outweigh the bad. The clouds will give way to sunshine. God is looking over us all.
Please know we need you all for both kinds of days. We want to share our joys, and lean on you with our sorrows. We want you to experience with us all the great wonders life has to offer, especially through adversary. On the other hand, we want to fight beside you when things do not go the way we intended, but the way God intended. We want to learn, reflect and grow from these knowledgeable and gainful experiences. We will rely on you as you all rely on us and each other. Share your lives with us. Share your memories; your laughter; your dreams; your sorrows. To us, you are our forever family. You have volunteered your time; your tears, laughter, and love; your dedication to my family and our well-being; your generosity and commitment to our safety. Without you, this journey would be a tragedy. Without you, we could not do this.
Thank you. Thank you for caring so much. Thank you for understanding and dedicating your precious time to check-in on us. Thank you for loving your lives, your family, and yourselves so much that you are willing to share your memories. Thank you for being you; each of you bringing a unique sense of love and care to our family.
I only hope you can experience what I have undoubtedly experienced through all of you. By this I mean your care and commitment; your love and affection; and your zest for life. I am forever humbled by your random acts of kindness. I am always here for you too, no matter what. I truly love you all. I cannot say that enough. Take care of yourselves and each other. Life is what you make of it. Have a wonderful evening everyone!