Kindred Spirits

I had a nice visit with Charlie and Carol Mathis this week. We go back a few years to high school. Well, my high school years with their daughter Julie, anyways. Allow me to share about kindred spirits through the years.

Julie Mathis 1983 Rebelee Yearbook Pic

Julie Mathis 1983 Rebelee Yearbook Pic

Julie and I were high school friends. We clicked. We were on the swim team together, took two years of German together, dated a bit, had a lot of fun, started our separate college paths, then had a final short season of fun after one college semester.

I cannot believe I was that skinny once! The beginning of Julie and my misadventures....

I cannot believe I was that skinny once! The beginning of Julie and my misadventures….

Halloween 1982, I think. She dressed as an old man. Me? Tiger woman!

Halloween 1982, I think. She dressed as an old man. Me? Tiger woman!

Life went on and we went our separate ways.

Julie made an effort before the 10 year class reunion to reconnect in 1993. I’m really glad she did. She got to meet my wife, we had a great time, and caught up on memories. Fun, alive, loud, always so full of energy; Julie was a fireball of life. We all had a great time at the class reunion.

Eighteen years later, Julie reaches out again. I’m glad she did. May 31st, 2011, I received the following message on Facebook from Julie: “What can I say. I’m been in the Internet business for 13 years and I just now get on FB. I’m well. How are you and Janice? Haven’t seen you guys since the 10th High School reunion.” A smile crossed my face and a warmth hit my heart.

We shared a few messages and caught up briefly. Told her about my cancer in 2008 and how this birthday celebration this particular September was also a “cancer free” celebration. I asked her to join us that September and she responded as follows: “I know your celebration will be amazing! I know this because YOU are amazing. Sorry I can’t be there in person.”

Classic Julie. Upbeat, fun, vivacious, to the point.

We sent a few messages back and forth, then communication died down.

I received the following message on October 20th, 2012 through Facebook from Julie:

“Robert: have an out of the blue question for you…Did anyone ever ask you if you were scared, when you were diagnosed with cancer or during any of your procedures?

Please let me know.

Kindest regards, Julie Mathis”

I cried immediately. I have tears in my eyes as I type this right now. I knew where she was going with this line of communication. Julie had cancer. She was reaching out in her own way to me, a cancer survivor from 2008, and wanted to talk. Kindred spirits reconnect.

We began speaking in earnest, mostly on the phone, a little on Facebook. As I drove back and forth to work, we would share the details of living with cancer. We talked hard things, life and death issues, yet she never allowed me to be serious for too long. Our conversations brought wit, wisdom, and a snarky humor back into my life. You see, I had allowed the weight of cancer, the corresponding unavoidable deaths of loved ones, and continuing difficult life situations to drain my heart dry of humor and laughter. I was in a long dry painful season and Julie was an oasis of sorts, just her whole approach to the ordeal.

She made sure I knew I needed humor in my life too. She started in on me with stories of high school years, laughter, and so much fun. She reminded me of songs I song quietly in Herr Kleinbeck’s class (she was spot on). She brought a few memories of funny events I hadn’t thought about since they happened. Her wit and sharp take on life was refreshing. I needed humor back in my life and she sparked that kindred spirit.

I had something she needed too. She wanted to talk about the fears, the pains, and the struggles of going through cancer. I’m not sure she fully played her cards. She kept what was happening on her end guarded, at least to a point. Those who love Julie understand. Yet she opened up to me on a level that caused me to feel honored and trusted. Meaningful communication about the difficulties and fears of cancer, medical nightmares, and all it entails ensued.

Julie began a CaringBridge page to update her progress. Seeing how I enjoy typing and sharing, I decided to write out some thoughts on Julie’s page, thoughts stemming from communications that were a bit edgy for me. I wasn’t sure it was the right thing to do, but decided to risk transparency.

Winter advances to Spring 2013. Julie did not return one of my phone calls. I took a deep breath and realized that whatever was going to transpire would find its way to me. The CaringBridge page updates began to slow down.

July 3rd, 2013, I sat at the base of Turner Falls in Oklahoma. I remember that day for a reason. I had been trying to reclaim some energy, some focus, trying to get out more and have fun again. Julie had inspired me to do so. I thought about her as I sat at the base of the falls. I thought about many things that day. I can’t say I was energetic to be honest, but I did try.

Where I sat July 3rd, 2013, thinking about cancer, life, friendship, Julie, and many things.

Where I sat July 3rd, 2013, thinking about cancer, life, friendship, Julie, and many things.

I returned home to find a message on CaringBridge from Charlie and Carol that Julie had passed that very day.  They thanked everyone for the support. “ps – Robert Baxter, here is our phone number, please call us.”

Charlie and Carol, grieving parents now, shared their heart on the phone. We reconnected. They asked if I would consider attending her memorial service. Nothing could have held me back. I sensed kindred spirits.

I met the most amazing people July 2013 in New Mexico, a diverse family, that collectively represented the very reason Julie is so amazing. We knitted hearts, many introductions made, and found we are indeed kindred spirits, absolutely kindred spirits in the most promising sense.

Julie’s family is so amazing. The apple did not fall far from the proverbial tree, I tell you. I had the honor of being able to share a couple of private communications, messages Julie had shared either on Facebook or spoke to me on the phone, during the service. Julie had referred to me as her oldest friend and stated “you know you’ve always been family, just ask my Mom” in one of her messages. Wow.

Before leaving to the airport the next day, I commented to Charlie I was sorry he had lost Julie to cancer. I suppose there was a smidgen of survivors guilt that surfaced just a touch in my heart. He put his arm around me, looked me in the eye and stated “perhaps I’ve gained a son.”

What an honor.

My family and I have had the good fortune to get to know the Mathis family better since then. We’ve made it a point to visit if we are remotely close to West Texas or New Mexico. They are now stopping in to at the least say hello and check on Janice and I when they are in the area or traveling through. My recurrence of cancer this year has struck us all hard in light of the events over the years. What loving, wonderful people, supporting Janice and I as we go through our next battle with cancer. You know, kindred spirits do that kind of thing.

Charlie and Carol came by for a visit today. Charlie has a new camera and pulled a “Robert” on me, that is, he got me in front of the camera (for a change) and I got to be the fool for once. I modeled a couple of hats and decided to try on the **excellent** superman cape sent to me by my sister-in-law Marie and her husband John (thank you!).

I would normally hesitate at such embarrassing pictures, but I don’t care anymore. Have fun at my expense.

Thank you Marie and John. High quality Superman Cape is in action.

Thank you Marie and John. High quality Superman Cape is in action.

Modeling the Fedora...

Modeling the Fedora…

general silliness

general silliness

Overseeing the photoshoot

Carol is supervising the photo shoot

What a blessing! Mathis family, you mean so much to me. I am so grateful to be and have always been family, a kindred spirit indeed.

Posted in cancer, chemotherapy, generosity, healing, hope, humor, joy, kindness, warmth | Tagged , , , , | Leave a comment

The Verge of 50

September 17th, 2014, I will be 50. Celebrated tonight with a spontaneous meal with my wife, sisters, and one daughter. Glorious fun.

September 17th, 2014, I will be 50. Celebrated tonight with a spontaneous meal with my wife, sisters, and one daughter. Glorious fun.

September 17th, 2014, I will be 50 years old. Much I could say, opine about, and all that. I’ll keep it simple.

I’m grateful. That will be all.

 

I got to spend the best day with my sisters. We went to the Picture People at the mall and had a great time taking pics.

Bruno, call Nora now!

Bruno, call Nora now!

We then had a spontaneous out to eat event at my all time favorite restaurant. It was all wonderfully unplanned, executed excellently, and could have only been improved by the presence of a few select others I love.

I am grateful to be approaching 50. Many don’t get to this point. Some don’t have a family that would see the opportunity to drop their schedules, gather around, and spend a glorious few days with each other.

Just because we can.

Instead of a 50th birthday party this year, I have a favor to ask of anyone reading this:

Will you consider, if you are geographically close enough, would you consider coming by for a visit?

In replacement of an official birthday party, I would to ask those who are geographically able to consider just a short visit to say hello to Janice and I. No gifts, no party, no specific timing, just short visit when it is convenient for your time schedule.

It would mean so much to me to have friends come by when they can, have a cup of coffee, and not much else. Just visit. Your presence is your gift. Your time is your gift. Your love is powerful.

I tell you what, as I get older and am going through cancer for the second time, I value nothing more than being grateful for those I love. Spending time with those I love. I hope you can make it by in the next week or two to say hello and spend a moment visiting. Here’s to 1/2 of an eventful century!

Here’s a pic of tonight’s spontaneous meal. It was just gloriously divine.

 

Spontaneous 50th birthday meal tonight. Just divine.

Spontaneous 50th birthday meal tonight. Just divine.

Posted in burkitts, cancer, chemotherapy, healing, hope, joy, kindness, lymphoma, warmth | Tagged , , , , | 2 Comments

Quick update

Having a great time with my sister Nora. Sister Eva will be joining us tomorrow. Having some good sibling time together. This is a rare event that all 3 siblings are together, really nice. Making every use of every moment. Living to the fullest. 

Health-wise, not much is changing right now. Steady. Usual chemo things happening to my body, otherwise just resting. I have some fun videos and updates coming in the next week or two. I suppose a no news is good news type of report right now.

Thanks for all your prayers and support, means the world to us.

 

 

Posted in Uncategorized | Leave a comment

Thank You Nora!

Thanks to my sister Nora for coming to visit this weekend and helping us out. This allowed Janice to rest at home this weekend and not worry about me this weekend. Nora stayed Saturday night in the room. She is an RN who works night shift in a hospital in South Texas. She is an “RN” in every sense of the word: working all areas she floats to work. Wow, I couldn’t do that! 

Just before discharge 9-7-14

Just before discharge 9-7-14

Nora and I had good conversation. She spoiled the staff with chips, queso, and donuts. Yum. We had a fun filled morning of being silly, some of which I caught on video. Might just have to release **some** of the video 🙂

She gave me a ride home at discharge and we grabbed a bit to eat on the way, then went to the pharmacy to get more medications. My leukine injections were already at the house. Previous injections were all premixed in one syringe, easy peasy. This one is two syringes that have to be reconstituted to make one full injection. 

 

Medical UPDATE: 9-7-2014

Finished RICE round #2. Now to wait unit the “nadir” (low point) hits. Usually takes 5-9 days. Anticipate lots of the usual – weakness, fevers, feel terrible terrible terrible. Part of the process I suppose. Not feeling terrible at the moment. Some weakness, trembling, having trouble holding the camera steady when filming video. 

I am not sure if the tumor is responding to the chemo or not. It certainly isn’t bigger, which is encouraging. I can’t say it is any smaller though. I’m not sure if that means it is just dying in place and turning to scar tissue or what is happening to be honest. We are going to try to start coordinating the stem cell transplant, but not sure that we can do much until we get remission going. I’ll update you more about transplant status once we know something.

Going to spend time with my family now. Thank you all for the continued support. RICE round #2 is now onboard and doing whatever it is going to do. 

Update to come (some superman stuff to address soon!)

Love to you all,

-Robert & Janice and family

Prayer garden evening of 9-6-2014 just as dark set in.

Prayer garden evening of 9-6-2014 just as dark set in.

 

Posted in burkitts, cancer, chemotherapy, healing, kindness, lymphoma | Tagged , , , , , , | 1 Comment

Sister and heading home

My sister Nora is up for a visit. Glad to see her. Haven’t seen her since the family gathering in Granbury.

I should be discharged tomorrow, Sunday. Will get a ride home from Nora. She’s going to help me transition back to home life for a few days and take care of me. Janice is taking a much needed quiet break this weekend to achieve a few personal goals.

Health wise, doing ok. Almost finished with RICE round #2. I anticipate about 5-7 days of feeling only slightly yucky. The nadir will kick in about 7 days after discharge and that is when I will feel really bad.

Thank you for your prayers and communications. Means a lot to me.

I’d like to hear from others who have experienced nadir’s personally or witnessed their loved ones go through a nadir. What was it like for you to see or experience? How many days did the nadir last? What were the symptoms?

Leave your responses in the comments section of this blog so we can all learn from each other.

Looking forward to seeing the Mathis family this week. We have a special bond going back many years. This is a pic from their last visit:
IMG_1205-0.JPG

Posted in burkitts, cancer, chemotherapy, healing, hope, lymphoma, Uncategorized | Tagged , , , , | Leave a comment

Good Day 9-5-14

My sister-in-law sent some fun things. One of them was a nice set of mustaches. What do you think of my first one?
IMG_1705.JPG
I received a few funny looks and many compliments thanks to Marie.

I had a visit from Heljä. What a special friend. She has been in Finland this summer so we had a good catch up session. Janice, Heljä, and I went to the prayer garden. Beautiful place. Refreshing to the soul.

I am on RICE round #2, so far tolerating it well. The hard part will be in about nine days or so when my nadir hits. That will coincide nicely with my turning 50 this September 17th.

Best we can tell, the tumor is still responding to the RICE chemo. We are planning on progressing forward with a stem cell transplant. Lots of thoughts and questions about that. Go a long distance (MD Anderson) Vs stay local?

This round of chemo was delayed one week due to fevers, anemia, and low platelet count last week. I received three units of red blood cells last week, but no platelets. I spoke with my oncologist about receiving platelet transfusions in order to not delay rounds of chemo.

She stated I will not receive platelet transfusions until one of these conditions are met: counts below 20,000 -or- active abnormal bruising/bleeding. Platelet counts in the body swing up or down dynamically. They fluctuate rapidly.

Chemo kills rapidly dividing cells. Platelets grow rapidly. The average life of a platelet cell is only eight days. Contrast that with red blood cells that live about 120 days.

Even if I were to receive platelets as a temporary boosting measure, this would not address the underlying issue that my bone marrow production is sluggish. My body cannot keep up. It will continue to be a close “cat and mouse game” of hitting me as hard as possible with chemo while respecting the baseline production of healthy cells. A transfusion of platelets does not resolve the issue of slow bone marrow production.

I have one of my sisters coming to visit today. Should be fun. More later, thanks for your prayers and feedback.

Please leave comments or questions on this post in the comments section, or email me at walkingthroughthistogether@yahoo.com.

Shalom!

Posted in Uncategorized | Tagged , , | Leave a comment

Media free break

Got settled in for the night at the hospital. RICE round #2 is about to begin. Things are going as well as can be expected I suppose.

I’m going to back away from most media of any kind this weekend and just take a break. Time for a simple quiet electronic free weekend. IMG_1690.JPG

See y’all next week. Value and appreciate all your prayers. I’ll let y’all know how things are going then.

Posted in burkitts, cancer, chemotherapy, healing, hope, lymphoma, Uncategorized | Leave a comment

Let’s Continue!

I am going to my oncologists office in a couple of hours. Will find out how my blood values are doing. Specifically, how my red blood cell count and platelet count is doing. I anticipate both rising enough to start another round of chemo today. 

I am also supposed to try yet again to speak with transplant peeps today. I have to say, this will be something like my 3rd or 4th communication on the topic of transplant and I am basically lost. Seems with each progressing phone call, I hear the statement “there must have been a misunderstanding.” I guess chemo brain is getting to me some and I’m having trouble understanding what they want me to understand, whatever that is.

I’m going to make it simple today for them. Give me a step #1. Then a step #2, and so forth. If they can’t give me that, then I don’t know how to proceed any further at this point with the stem cell transplant process. The insurance is convoluted, communication is sketchy, and I’m not feeling my best to be honest. If they can’t boil it down to a 1,2,3 process, how can I in the midst of all this medical confusion?

I’ll post more details in the next day or two as I find out what is happening next. Thank you all for your prayers and kindness. My family!

 

Posted in Uncategorized | Tagged , , , | Leave a comment

Another day another infusion

Time for my monthly IViG infusion. Boost the immune system.

Had a nice Labor Day with the girls and Cody yesterday. Simple day of BBQ and movies. Slept all night on the couch. Dang new couch is too comfy.

Janice drove me to the infusion center and is now running a few errands.

Rather tired this morning. Just no energy. Waiting to hear from MD Anderson and the transplant team still.

IMG_1686.JPG

Posted in burkitts, cancer, chemotherapy, healing, hope, lymphoma, Uncategorized | Tagged , | Leave a comment

Sent home 8-20-14

Quick note to say I was released from the hospital this evening. My platelets are responding too slowly for the round of chemo due to begin yesterday/today.

Video to be released tomorrow with a better more thorough explanation. Ate pizza and am napping now.

Thanks for all your support and love.

Robert and Janice.

Posted in burkitts, cancer, chemotherapy, healing, hope, lymphoma, Uncategorized | Tagged , , | Leave a comment