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The post that follows is from Billy / Bill / Billy-T, Billy Tiemeier, Vanessa’s husband.
Billy. In costume, obviously. The boys weren’t convinced it was him in the parade…
See! Uncle Billy!
You probably haven’t heard a lot from Billy directly thus far in V’s story, because he’s (kind of) quiet like that and more a “working hard behind the scenes” kind of guy. He’s also kind and funny and patient and helpful…. and currently watching daily as his wife, and the life he had planned and hoped to share with her for decades and decades, instead slips further and further away.
We asked him to share his experience and perspective on life these days, and he was gracious enough to write this account. We’ve had many good discussions over the course of his refining of this blog post, and I hope he knows we asked him to (he’d say -made him-!) revisit it several times over NOT because we like to be annoying crazy sister-in-laws and “editors”, but because we feel it’s REALLY important, both for you all and him, to have his authentic insights and feelings added into the public story we are sharing about Vanessa. The impact of cancer ripples out far, and being so near the center of that ripple, the spouse of the patient has their own unique set of challenges and heartache. Billy is not sure how many posts he will write in total, but we hope this is just one of many, so feel free to show him some love and encouragement to keep going in both his writing and his own personal journey towards living sincerely! ;)
Also, one other thing we’d like to point out is that Billy has recently helped start a local (Cincinnati) men’s group along with some other “cancer husbands”. Bosom Buddies is a network of men who hate breast cancer because it has picked on their wives/significant others. (See video of news segment about the group here!) Any male caregivers of a cancer survivor (any kind, not just breast cancer!) are invited to join them for the next meetup on December 9th from 1-4 at West Shore Pizza (6176 Tylersville Rd., Mason, OH) for lunch and to watch the Bengals vs. Cowboys game. If you know any guys who could benefit from this camaraderie, please share the invite.
OK! Without further ado, here’s Billy, in his own words and reflecting his experiences and insights.
Prequel
When I was asked to write a blog post for the Live Sincerely Project I was conflicted. For one reason, I have not taken the Live Sincerely Pledge myself, since I feel it is not my time to live sincerely, but now is my time to help Vanessa live sincerely. Two, I did not feel I had the time to write a blog post with everything happening. And three, I did not know exactly what Jess and Christina wanted from the blog. So thus, this my fourth attempt at writing this post. The first attempt was “too real”, the second attempt was “too sugar coated”, the third attempt was “close”, so this is my fourth attempt which is really a modification of the third attempt. Just a heads up, it reads like a roller coaster – just like our lives, with many ups and downs that never get as high as the last hill, but somehow ends up lower on the next descent… and will ultimately drop over a cliff.
I met Vanessa in early 2002 and we started dating in April 2002. I proposed in July of 2005 and we were married in June of 2006.
In March of 2007 Vanessa was diagnosed with Breast Cancer and today is in Hospice. I have now known Vanessa longer with Breast Cancer than without. This has created tricks with my own memory, trying to remember the good times we have had together from vacations to parties to concerts, as the difficult times and challenges and various drugs and appointments and details about Vanessa’s medical condition start to take over the good memories.
Hospicecation all I never wanted. Hospicecation had to get away.
Hello Live Sincereliers, this is week 6 of my hospicecation from work with the intent of helping Vanessa continue to Live Sincerely. Luckily my work has been great in allowing me this opportunity to spend time with Vanessa. I am happy to have this time to spend with Vanessa and not have to worry about work although work did help provide a break from the stress of home. Thanks to all my coworkers for your generosity during this time.
Shopping
Taking my Hospicecation has also helped relieve a lot of stress on Vanessa’s family and me. We do not have to figure out who will be staying with her during the weeks. Vanessa has been very particular about who she wanted to stay with her just because it is difficult and a lot to try and balance and manage for the person staying with her. However new stresses are beginning as Vanessa continues to get worse. With that said thanks to her daily caregivers for all your hard work and dedication; this has not been easy especially since Vanessa is not able to drive herself places and wants to go everywhere.
We have been able to accomplish many things in these 6 weeks we otherwise would not have been able to. We have done lots of shopping, including a visit to 10,000 Villages so Vanessa could purchase over 60 ornaments to give to our nephews over the next 20 years of Christmas to help remember her. In addition, a lot of personal shopping for Vanessa and shopping for the nephews has been done, house cleaning and catching up with old friends.
Week’s worth of pills and a day of keeping track
Of course not all caregiving is fun and games. Every Saturday night I fill up Vanessa’s pill caddie for the week ahead. This gives her the best chance to take the pills herself and make sure she is taking all the correct pills. We have recently made multiple adjustments in her pills, including the amount she takes and order in which she takes them. She occasional forgets to take her pills, so throughout the day I check the pill caddie and the notebook to see what she has taken and the times she took them. She takes 12ish pills plus 2 gummy vitamins daily, these include her hormone treatment for the cancer in her body (does not help the brain which is still getting worse), steroids for brain swelling, pain pills, anxiety pills, depression pills, and sleeping pills. Other activities include making sure she remembers to eat, and dealing with mood swings and forgetfulness in the most pleasant way possible. (Here is a website Jessica found which highlights some of the key brain symptoms we have been dealing with.)
Lately she has been sleeping better thanks to switching her medications and adjusting when she takes them. If I wake up before her I check to make sure she is still breathing since in these situations her brain could just decide it is done at any moment. Along those lines we have completed her body donation form to the University of Cincinnati Medical School and are waiting to hear if she is accepted. The most important thing to have in dealing with Vanessa is a good short term memory. Her short term memory is fading fast so she does not remember the things she has said or done, so I have to try to remind her of things. Also, forget the bad things she may have done or said during one of her mood swings and suck it up like nothing happened, and try to enjoy the next day even though my knee still hurts from when she whacked it with a bag full of who knows what during one of her fits.
I have a better understanding of why husbands leave or stray. Some days it is like being on a sinking ship that is firing its last cannonballs at you while aboard. You want to stay on the ship until it reaches its final resting place at the bottom of the sea, but when it finally does you may not have enough strength to swim to the surface in time to save yourself. So maybe they have set up a “rescue ring” along the way to help pull them up when the time comes, is that a bad thing? Or is it better to jump out early? Or is it better to stay till the end and hope for the best? Only time will tell luckily with great friends and family hopefully someone will be able to pull me out of the water when the time comes?
Another analogy is ripping a band aid off slowly. Everyday you can tell the band aid has been ripped off a little more because it stings worse than the day before and is starting to pick up dirt and dust. You try everything you can to keep the band aid on but there is not enough tape to hold it down so it just continues to fall off. Ultimately the band aid will be gone but the scar still there- maybe over time the scar will lighten, maybe not. So is it better to have the band aid ripped off quickly or continue to let it slowly rip off. At least while it is slowing falling off the scar lighting process can begin, which may help in the long run.
As the old saying goes “It takes a Village” and this has been no different. Everyone has been great and helpful in any way they can, including just being normal and talking to providing distractions from the everyday routine, and even talking about their day. So thanks to all of you and as always please continue to Live Sincerely.
Thanks so much Billy for sharing your perspective. You are doing a wonderful job and I’m glad that you have loving people around to support you. I think about you guys all the time. Know that we’re praying for you and know you are loved.
Thank you, Billy. I have been wondering how you deal with it all too. The sinking ship analogy is prefect. I think of all of you guys and how hard it must be for you every day. Your strength (and V’s and the rest of her family’s) is inspiring.
I love you guys. I really don’t know what else to say except that you both have shown exceptional grace in light of what is happening. It is safe to say that you are on a number of prayer lists world wide and I promise there is a “rescue ring” waiting for you. Blessings to you both.
Billy~we all love you, we are all circling the ship, we will do everything humanly possible to make sure you don’t drown.
Billy, you have truly shared a very important part of your life with us and I thank you. Your family has touched my heart and my life, you have strengthen me, made me laugh, cry and think of the future. I pray that God will continue to strengthen you and pour his grace and mercy on you and your family. There is indeed a “rescue ring” waiting for you. I love you guys.
Thank you so much Billy for sharing your experience. Truely inspiring!! Prayers for all of you.
Billy,
Thank you for sharing. I agree with Sara…we are all here treading water and will help to pull you up when you need us. I love you guys:)
~Marcy
Thank you Billy for sharing your story. I am 35years old and a Breast Cancer survivor and I just started remission. My sweet husband and my two sons have been thru a lot this year with me. I pray for you and Vanessa and all of your family and friends. I believe that God has a plan for you and you will be blessed. I know that you all are wonderful people taking care of Vanessa the way everyone does. I take care of my father n law who has dementia(he lives with us). So I know a little of what you are going thru. Between chemo and radiation and takeing care of my dad and my husbands dad it is so good to hear about someone else experience and how they all cope. I cry a lot when I read these blogs. I cant imagine exactly what you all are going thru but I will keep your family in my prayers. I pray you have comfort and inner peace. Sincerely Loretta
Thank you for sharing your story, Billy. Over and through all the painful sharing in these pages, love shines through.
I knew those swim lessons we made you take might come in handy ;). Seriously Bill I know you realize there are many, many people who love you and Vanessa,and would drop everything, and do anything to help you and Vanessa.
Love,
Mom and Dad
Dear Billy … It is so difficult to read this. I can only say how proud we all are of you and grateful to have you and Vanessa in our family. We will ALWAYS be there for you and love you dearly. Love, Aunt Sue
Dear Billy,
You and Vanessa are so inspiring. Thank you for sharing your feelings. We love you and thinking of you both everyday.
Xoxo, Robyn
Billy, Thank you so much for sharing. You truly have a beautiful love story. I wish so much it had a different ending. Much love to all of you.
Billy,
Wow, what a great job you did writing this. You are such a strong and dedicated husband and I truly admire you for sharing your thoughts, as I’m sure it wasn’t easy. You’re truly an inspiration and to so many throughout this long journey. Love, Leslie
Dear Billy,
Thank you for sharing your thoughts with all of us. I see you Living Sincerely in the generous gift of yourself, as you care so dearly for the one you love–Vanessa.
Bill –
everyone in the family loves & supports you both. God Bless
Billy, Vanessa and the whole Tiemeier family, You are all amazing. I admire all of you. I was one of the caregivers that helped our mother live with and through cancer. Billy your words are that of someone much older. You really do “Get it”! Thank you your words are so healing to me. You get through today and shake it off only to do it tomorrow. I was fortunate to be able to witness the best of my Mother through the end of her life. I call it dessert because she was the sweetest that I ever knew of her. You are so strong and I am thrilled to hear your perspective. I have often wondered about you and your struggles. You are a wonderful and amazing, son, husband, uncle……MAN!
Thank you so much for sharing your experiences. I can not imagine how you are dealing with all the things you have to deal with. Lesser men than you would have already left. I admire you for staying with Vanessa. It is truly a testiment to your love for her. God bless you both and we continue to pray for all of you.
Billy!
I’ll say it to anyone who will listen until I have no more breath left in me – You’re an amazing person. Thank you for your friendship. The two of you are often in my thoughts.
Billy – I was so touched to read your post tonight….. I think of you, Vanessa and your families often. You are a wonderful person and obviously, the angel Vanessa needs. Thank you for sharing and thank you for being who you are. It gives us all hope and inspiration.
I think about you and V everyday. Thank you for sharing some of the things that you’re going through. You’re both such an inspiration and have touched so many lives…including mine. LOVE you guys so much!!!
Thank you for sharing your side. I’d been wondering how you were handling things. Your sinking ship analogy is perfect and reminded me of when I lost my dad to prostate cancer back in ’95. A sinking ship is how I would describe that time too. Just know that I think of you guys often and pray for you all for whatever lies ahead.
Billy, I am sure it was difficult for you to share but it was beautifully written. Thanks for sharing!
We love you….. we will do lunch soon. You are doing great Billy, and V’s sisters, family, and your family….thank you for being so raw with us<3
Bill, thanks for writing the post. I kind of have trouble understanding where you’re at because it’s so hard for my source to talk about so it’s really good to hear from you. Saw you on the news and you sounded very articulate and intelligent… much more so than you did when Tom jumped on your back for being a d*** while playing Monopoly. Patience is a quality that I really admire in people Bill, I think it shows great maturity and dedication and brother, you’ve got it in spades. Praying for you guys and love you both.
Billy,
From your early childhood you displayed a special energy and love for life. You are a perfect partner for Vanessa. You are a source of her strength and the two of you are to be admired for the way you have walked this journey with dignity and grace. You have made us better partners in our own marriages.
Thank you and we love you and Vanessa dearly,
Uncle Mike
Billy,
I admire you for the strong person that you are especially in difficult times. I am not sure how I would react if my immediate family member was given the obstacles that your V faces everyday. I can only hope that I would be as strong as you have been in these times of adversity. I hope that you do continue to post your feelings, trials and tribulations through the journey you are currently enduring as I feel that it gives you an outlet to express your emotions but also can help others know that they are not alone when they are dealing with the same journeys. Finally I am proud to call myself a colleague of yours but I more proud to call you a true friend. My thoughts and prayers are always with you and V. Live Sincerely.