Monday, June 15, 2020

The Century Cycle!

Surely it cannot be three years since I last posted. Obviously, I will not be winning any awards for blogging excellence!

The lack of posts is actually a good thing because as they say “no news is good news.”

It has been just over nine years since Deana’s diagnosis. 

There are no words to adequately capture how grateful we are that she is still with us – and more importantly, she is thriving. You can see it in this photo from her 8th "birthday" last November. We marked the occasion cheering on our beloved Aggies. Big smiles and a "Gig 'em!"

Six years ago, Deana and I journeyed to Emory in search of a new treatment path. She is now in her 100th cycle of Venetoclax. Although she has the unenviable task of taking nine large pills each day, the side effects with this drug have been minor compared to what she endured before. Deana looks great and so it can be hard to remember that she is still in the fight for her life, even though things are quiet on the battlefront.

You might be wondering how she’s coping with all that surrounds the COVID-19 pandemic. To say that Deana is immune-compromised is an understatement. We are all very concerned that if she were to contract the virus it could prove fatal. She leaves the house only for medical appointments. Emory arranged with Abbevie, (the company that makes Venetoclax), to allow her treatment visits to take place at the University of Pittsburgh Medical Center for the time being. This step will greatly reduce her likelihood of exposure. (Although selfishly, I miss seeing her in Georgia!) Deana is very happy staying home and has been cooking up a storm. The photos she sends of these gourmet meals make my mouth water.

The children are also doing well. Andrew will turn 21 next week. This is very hard to fathom. He continues to work at a car dealership during the day and takes weekend classes as he pursues his dream of becoming a commercial pilot.

Clare is headed into her senior year at Sewickley Academy and was recently voted communications director for her class. She also plays field hockey and is involved in numerous other clubs. She was recognized with the school's "Hands" Award, which is presented to "a junior who has gone above and beyond to actively participate in a variety of hands-on experiences that showcase a broad range of skills. This student has showcased their ability to be an active listener and effective communicator, as well as a resilient innovator, creative problem-solver, and curious experimenter. An engaged and well-informed citizen of the local and global community, this student utilizes their talents to the benefit of others." Of course, the whole clan is very proud! 

Clare and I had planned an extensive tour of colleges for late March, which was canceled due to the pandemic. It is our hope to get on the road in the fall to find the perfect fit for Clare.

Gregory is 11 and is finishing 5th grade. He enjoys video games and plays many sports. He had a great wrestling season this winter, winning at least one trophy that was almost as tall as him!

Even though our updates have not been timely, please know that we are thankful for all of the love, support, and prayers over the last nine years. They have sustained us in difficult times. We are blessed to have Deana here. In the last year, two of Deana’s fellow MM warriors, both mothers about her age, came to the end of their journeys. We can take no day for granted.

We hope that you and yours are staying safe and healthy in these unprecedented times.

Tuesday, July 4, 2017

Mt. Fuji Here We Come!

Once again I have been delinquent in keeping up to date with posts. So many positive things have happened with regard to Deana's treatment. I must do a better job sharing these with the larger MM community.

The most interesting development is that Deana and I will be joining a team of MM warriors, caregivers, doctors and other supporters as part of Moving Mountains for Multiple Myeloma, a collaborative initiative of The Multiple Myeloma Research FoundationTakeda Oncology and Cure magazine. We are very excited about taking this journey and have gathered the names of many cancer warriors to add to our team's banner. This adventure serves as a fitting metaphor for life after a cancer diagnosis -- although the trip up the mountain has clear parameters and will only last two days!

Most members of the team were able to participate in a training hike the first weekend in June. It was fun to meet the group and learn more about each person's reason for participating. Deana and I were pleased to not be last up the mountain! (The photo at left is Deana on the training hike, which took place at Mt. Monadnock, NH.)

We've been working hard to surpass every goal that has been set for us -- including the fundraising minimums. We are so thankful for all who have contributed to the life-saving work being done by the MMRF. The trip is generously underwritten by Takeda so all the funds donated are going directly to funding the kind of research that is keeping Deana with us.

If you are able to help us -- we'd be grateful. Our Team BTHOMM is up and running. It is very easy (and safe) to contribute online. We also welcome sharing of our information in the event you are comfortable sharing our site within your networks. It has been through our openness about life with MM that so many wonderful people have come into our world. We are always looking to expand that circle.

With regard to Deana's treatment, she continues to be one of the rock stars of the Ventoclax trial and we continue to hear wonderful stories from the doctors as to how they have been able to save lives based on what they have learned from treating Deana and her success. If you ever doubted the need for research funding, my sister is living proof of its importance.

Mt. Fuji -- Here we come!

Monday, November 28, 2016

It Bears Repeating....

Perusing today's New York Times, I came across another terrific article dealing with the challenging topic of What Not to Say to a Cancer Patient. The author includes tips shared before, yet these always bear repeating, especially as we head into a season heavy with gatherings.

As the captain of a cancer-fighting team, many of these suggestions go beyond conversations with the patient herself (or himself). Please consider this when talking with family and close friends of a cancer warrior.

The author notes that every cancer is different - an important fact that is daily changing the approach to treating cancer. Each patient presents uniquely and will respond to the treatment in an individual way. While Deana has been termed the rock star of her trial, there are plenty of others who unfortunately did not have the excellent results Deana has been experiencing. For them, we hope that new opportunities will present themselves...soon.

For us, last Monday was treatment day. For those readers following our journey, my sister is doing VERY well and we are VERY grateful... and as I constantly share, lucky to be in the care of the outstanding team at Emory's Winship Cancer Center.

In our family's faith, the season of advent began yesterday. It is a time of waiting and preparation. In addition to my constant gratitude that Deana is here to celebrate another Christmas, I will continue to wait for a day when there will be a cure for all cancers. And - I will not cease in my preparations, remaining focused and advocating at every turn, for Deana and her fellow warriors.

Monday, November 14, 2016

"If there's anything I can do...."

"If there's anything I can do...." -- It's a phrase heard often by those battling cancer and those closest to them. Whether it's innate or a product of our upbringing, we seem to have great capacity for generosity, especially to help those who are facing challenges.

There's much writing about using caution when offering to help -- notably that if you don't offer something specific, you risk creating stress, as few people are comfortable articulating their needs.

Through the years, I've marveled at how some friends jump in immediately, using a variety of tools to mobilize all those wanting to help. There are some terrific websites such as Meal Train and Take them a Meal which make it easy to organize the "village." Deana was fortunate to have many people assist with meal preparation during the nine months leading up to her transplant.

There are many other things you can do to support someone coping with a cancer diagnosis. Here are a few suggestions I've learned during our five year journey:

*Accompany your cancer warrior to treatment.
If you haven't been through it, trust me when I tell you that it is not as romantic as it looks on television. There are many hours of sitting around. Having a friend or loved one there is a visible sign of support and can do much to make the time pass.

If you can't spare a day to sit at the hospital, offering to drive to and from treatment, or offering to take children to activities that coincide with treatment days, can also be a huge help.

*Care packages
Knowing that someone is thinking about you and cares enough to put together some goodies for you means so much. We were blessed to have friends and family far and wide who sent little remembrances or dropped off a bag of treats. I've recently read about some clever ideas such as sending gummy bears for times when there's a desire to bite off someone's head, or a bag full of yellow items, designed to bring sunshine.

If your cancer warrior has children, supporting them is also appreciated. Depending on the child's age, coloring books, crayons, DVDs, and the like can all help to provide activities to pass the time.

*Visible signs of support
This is an area where you'll have to know how comfortable your warrior is with public displays of support. When Deana was diagnosed, we ordered dozens of pins, bracelets, decals and other multiple myeloma awareness paraphernalia. It is quite easy to personalize t-shirts, hats, buttons and stickers that can demonstrate your support. Sharing on social media widens the net and increases the good energy.

*Donate
This continues to be one of the more difficult areas as it seems that so many who offer help want to do something more direct and tangible. This is truly understandable -- and yet, the medical advances that have enabled so many patients to survive cancer were made possible by financial support.

As we enter the holiday season, please consider contributing to the charity of your choice, in honor or in memory of a cancer warrior dear to you.

Our family could never fully express our gratitude to The Multiple Myeloma Research Foundation and The Leukemia and Lymphoma Society for their tireless efforts to fund research and provide support to patients and their families. Their commitment to advancing a cure has made it possible for us to have Deana with us.

The photo above was taken yesterday, as Deana's daughter Clare wrapped up her final performance as Belle in her school's production of Beauty and the Beast. (She was outstanding...) I encourage you, any time you are hesitant to contribute, think about this photo and know that your generosity indeed has direct impact.








Monday, October 31, 2016

Cycle 39 -- It's Divine!

Happy Halloween!

It was fun to have our Emory day fall on a holiday. Deana planned great costumes for us -- we came dressed as a doctor and nurse, with scrubs provided by Darrie. (We learned that Darrie outfitted us in the Versace of scrubs -- very high quality!)

Here we are...off to Winship Cancer Center!


When we arrived, our LPN Michelle took one look at us and asked us what we had on. We proudly declared -- It's Halloween! As we got back to the Clinical Trials area, Keino (who is at the hub of everything) also gave us a quizzical look and then realized these were our costumes! We thanked the great team for all they do for us with a big bowl of candy - which all seemed to be enjoying as the supply dwindled considerably over the course of the afternoon.

Everybody has given us high marks for creativity-- Darrie went so far as to make us official-looking name badges and my sister-in-law Margaret lent me a lab coat. Deana and I have found that walking around the hospital dressed like this is a VERY different experience from being in everyday clothes. It really lends credence to the idea that we make a lot of judgments based on visual cues.

Now for the important stuff -- Deana's numbers are terrific. Her hemoglobin was 12.7 -- this is the highest it has ever been. We were so excited -- lots of Aggie Whoops and some high fives too. On this visit, Deana had her quarterly infusion of Zometa - a drug that helps to maintain her bone strength. (As a reminder, we have been exceptionally blessed that Deana has not had bone involvement -- many MM patients do.)

The only new thing to emerge today was the need for additional fluids. Although Deana's creatine levels are in the normal range, it is advised that she be on the higher side of normal and this requires more fluids. If you see Deana, ask her how much she's had to drink that day -- and by drink we mean water or something similar.

When Deana and I were talking yesterday she reminded me that she had set a goal to be the best MM patient ever. She's clearly achieving that and more. Again today we were told she is the rock star of this trial, that everyone is so excited about her and that so many people want to meet her. Our awesome coordinator Kathy asked Deana if she gets tired of hearing that she's the rock star -- and we both quickly shouted, "Absolutely NOT!"

Deana has also been so incredibly generous in speaking to other patients and assured Kathy that she is always glad to speak to anyone who wants to meet or talk with her.

Needless to say, I am VERY PROUD of my sister. She is BTHO MM every day.

Deana flies back to Pittsburgh in the morning. I always hate to see her go. I told her that it still stinks that she has cancer, but selfishly, I like getting to spend this time with her.

For all the love, support and prayers we receive from everyone on our team, we remain grateful.
-----------------------------------------------------------------------------------------------------------------------

Photos from today:

Here's my super brave sister - she's always laughing and smiling, even when significant amounts of blood are being taken.

I've been a doctor for a year -- but not this kind of doctor. It was fun to try it out for a day.

Deana requested I share this and let our team know that this tray represents $35.



Tuesday, October 11, 2016

Cycle 38 - FEELING GREAT!


Another day at Emory’s Winship Cancer Center is in the books. It was an uneventful visit, though we are grateful for that.  Deana’s hemoglobin was 12.1 – a very good number. I am attributing it to the spinach I put in the omelet I made her Sunday morning. She says there wasn’t enough in there to make that much of a difference, and truth be told, she’s probably right.

People express sympathy that Deana has to fly in every three weeks and they question whether there will be a day where Deana can get this treatment closer to home. We appreciate that concern; however, let us assure you, we are all so very thankful that Deana is being treated at Emory.

From the moment we arrive Deana is treated like royalty. The staff who handle check in are always friendly and we are then met by the wonderful Michelle, who offers a warm blanket and escorts us back to the clinical trials area.  We walk through the door and Keino yells an enthusiastic “Pittsburgh!”  (She also tells Deana she loves her when we leave.) Alvin, one of the selfless volunteers, comes by with a cart overflowing with snacks and lets us have as many as we want.

Deana and Colleen pepper talk of children in between all the official questions and exam. (Yesterday we were glad to see Hannah, who fills in when Colleen is out.) Coordinator extraordinaire Kathy was on vacation, but she sent Jennifer to take care of the details – and although we are BIG Kathy fans, Jennifer was terrific too.

In between Kathy and Colleen’s visits, we are cared for an excellent team of nurses. Yesterday we had Tina, whose daughter is a high school senior – she and Deana traded war stories of going through that experience. It is homecoming season, after all. Carrie always provides the best restaurant recommendations and she and Deana entertain one another with stories of the Housewives shows.

Sometimes we see one of the doctors working on the trial but often we do not. And sometimes we see Melanie, who plays an essential role in keeping Dr. Lonial’s trials running smoothly. We give a big thank you to Melanie for sending Katherine to see us so Deana could ask some questions regarding new charges that are appearing on her bills.

On Saturday October 1, I participated in the Winship 5K which proved an inspiring way to start my day. This event raises money to support the outstanding research taking place – research which is critical to keeping Deana with us. Many of the Emory team were still talking about their experiences at the race. I hope Deana will be able to be in town for it next year.

This is the reality of cancer treatment. It really isn’t glamorous. There’s a lot of sitting around, waiting. The challenges with insurance seem to never end. Yet, all of it is made better by the Winship team, full of caring professionals who take exceptional care of my sister. In this season of Thanksgiving, my gratitude for them cannot be adequately captured in words.

I am also very thankful for the love and support of Peter’s Aunt Anne, who continues to host Deana in her home. There is no telling what mischief those two are getting into while I am writing this. You know you’ve married well when that part of your family treats your sister as one of their own.

Deana has specifically requested a shout out to our fellow Aggie, Butch, who, at the Pittsburgh A&M Club game watch party on Saturday told her that he follows the caringbridge site religiously. Butch – a big Whoop! for you. We also got a smile out of the caringbridge post from Libby, a fellow MM warrior who knows that we are Aggies and sent a message to tell us how happy she was that A&M beat Tennessee on Saturday. We are thrilled at the success our beloved team is experiencing this season and hope that it will continue. However, we must emphasize that our love of A&M transcends the activities on the gridiron. It is a profoundly special place to us.

I just returned from taking Deana to the airport and now we’ll each get back to our daily lives for 19 days. Then she’ll be back and the cycle will repeat. I’m so pleased to be back in Georgia so that I can fulfill my duties as team captain in the manner I prefer. I must also note that Deana is not happy with my photo from yesterday and requested that I crop it, which I have not done. Be advised that she is wearing a huge sweatshirt and is not as large as she appears in the picture.

As always, I close with tremendous thanks for the continued love and support. The journey continues…



Monday, September 19, 2016

Cycle 37 -- Here we come!!!!

I do believe I have previously quoted some platitudes about good intentions and yet here I find myself again, always with the good intentions to provide updates about what's going on with Deana -- and then weeks, even months, go by without me taking some time to do that.

Today was a treatment day - made a bit more special in that September is Blood Cancer Awareness Month. Allow me to indulge in a moment of thanks for the great work of The Multiple Myeloma Research Foundation (MMRF) and The Leukemia and Lymphoma Society (LLS)-- two organizations that are doing so much to advance research and provide essential support for cancer warriors and their families.

If you don't think that your contributions to these organizations make a HUGE difference, let me assure you -- THEY DO! The clinical trial that has allowed us to have two more years (and hopefully MANY more) with Deana wouldn't be possible if the funds weren't there to support the work of these outstanding doctors and the medical professionals who support them. (A big shout out to all the terrific nurses - and our awesome coordinator, Kathy - who make our days at Winship Cancer Center so enjoyable.) Deana has again been fortunate to receive financial support from LLS to offset the cost of the copays for her treatment.

Since I've last posted, we have been graced with Clare's presence at a treatment day. It was just wonderful to have her be part of a Georgia weekend and allow her to meet all the people who are doing so much to help her mother. On Deana's last visit, her dearest friend from college days flew in to surprise her. I had so much fun conspiring with Mecca and I'll never forget the look on Deana's face when Mecca rolled down the window as we pulled into the curbside pickup. Deana's hand went to her mouth -- and then she started to cry.  I have posted some photos to Facebook from that fun girls weekend - full of food, drink, laughs and love.

This weekend, Deana and I were glad to watch our beloved Aggies BTHO Auburn on Saturday night. A weekend with an Aggie victory is a sweet weekend indeed. Yesterday, we decided to get some culture and went to Act3 Productions performance of Clare Booth Luce's The Women. Though the play was written in 1936, it holds up well and did a masterful job of representing the good and bad of women's friendships.

And then there was today -- we arrived at Winship and were delighted to see Dr. Kaufman, who is the lead researcher on Deana's study. Dr. Kaufman was quick to let Deana know that she remains the ROCK STAR of this trial. There are some changes that are happening with the trial - none of which affect Deana, but it is important to note that her determination and courage have allowed the researchers to consider how this trial could help other patients. They are planning to add about 15 patients to the study and these patients will be receiving a steroid along with the magic elixir that has previously been known as ABT -199.

ABT -199 now has a name -- Venetoclax. Deana and I have decided that ABT-199 is easier for us -- at least for now. She's glad she doesn't have to add the steroid, as the side effects from steroids are not fun for her -- or her family.

Venetoclax has been approved by the FDA for treatment of CLL -- a form of leukemia. It will be at least three years before the possibility of FDA approval for Venetoclax as a treatment for multiple myeloma -- and that is just fine by us. From a financial perspective, there are tremendous benefits to the clinical trial. These pills would literally cost THOUSANDS of dollars -- and we cannot be assured that even if the FDA were to approve Venetoclax that the insurance company would approve Deana taking it. (I will not go into the insanity that Deana went through last week with the insurance company relative to the prescription for her neupogen shot -- no one, especially no one dealing with cancer, needs to spend precious time dickering with insurance over medications that they have been taking for two years.)

Deana's lab report was awesome, and so, to celebrate our fantastic report, we devoured a delicious lunch at Thaicoon and then Deana humored me with some thrift store shopping...where we acquired a great little book about hikes near Atlanta which shall prove to be good fodder for upcoming adventures. (Should I mention that there was a breakage in the holiday decor aisle????)

And so we commence Cycle 37. We remain more grateful than words can express to everyone who has brought us to this place. We are thankful for the continued thoughts and prayers and humbly request that they keep coming.

In honor of Blood Cancer Awareness Month, please consider a contribution to one of the organizations above and/or give blood if you haven't done so in the last 56 days. I'm on my way to the donation center after I drop Deana at the airport in the morning...