Thursday, August 27, 2015

Sometimes I thank God (cue the music)

If I know one thing, it's that my audience will automatically hear Garth Brooks' voice drawling out 'Unanswered Prayers' when they read the title line. "Remember when you're talkin' to the man upstairs - just because He may not answer doesn't mean He don't care...." While I totally agree with Garth, this post is actually about answered prayers.

Tuesday marked four weeks since d-day (diagnosis day). Four weeks. 28 days. Really? Just 28 days? It seems like a lifetime ago in many respects. I have learned and felt and thought so many things in the last month that I have yet to share here. One of the main things that I am quite sure of, though, is that we are deeply loved and cared for by many, and especially, by God. Your expressions of love, encouragement, and prayers have been overwhelming (in a good way). [Also, please forgive my lack of response sometimes; a few days are emotionally overwhelming and other days are just busy]

Wednesday, July 29 as we headed north on I-17 out of Phoenix and toward Flagstaff, I spent the drive soaking in God's handiwork. Our 14-hour drive that day provided such a diverse landscape - one that I know I will not see for, Dan and I spent the drive just relishing the beauty of God's creativity. As we headed toward Flagstaff, I suggested that we pray the rosary.

Wednesday's mystery is the 'Glorious Mystery', which starts with meditating on Jesus' resurrection, then the ascension, the outpouring of the Holy Spirit. As we prayed through the mysteries, the Our Fathers, the Hail Mary's, I had a profound sense of Christ's peace. We were surrounded with unknowns - and, yet, I KNEW that whatever the outcome, we would be all right because we would be WITH God. It was an emotional prayer; in coming close to God, I was able to release tears and open myself up to His healing, providential mercy. I also had a very strong sense of our need to pray the rosary every day, and ask others to do the same.

Let's start with Thursday's events: Dan had been running fevers on-and-off and had a slight cough for days. The Mayo hematologist said he could write Dan a prescription for an antibiotic (but didn't); the doctor also gave us his personal cell number to call in case we were getting the run-around with doctors. Dan left a message on Wednesday to see if he could get that AB before we left; no response. Overall on Wednesday, Dan felt pretty good. On Thursday morning, he had a slight fever. I called UM that morning to see what the process was to get Dan taken on as a patient. First, UM needed his paperwork - and then, it might take anywhere from 1-3 weeks to be taken on as a doctor.

On Thursday, while praying the 'Luminous Mystery,' the first starts with meditating on the wedding at Cana, where Mary instructs the servants to 'do whatever Jesus tells them to do.' I asked Mary to move in the hearts of those who could act on our behalf. While praying that first decade (ten) of Hail Mary's, Dan received a call from Dr. Slack (the Mayo heme), who said he would call the prescription into Creston (so my mom could pick it up that day), and also fax a referral to UM. After finishing the rosary, Dan called UM (I think it was about faxing medical records?) - and whomever he talked to actually went through the whole process of setting him up as a patient - speeding up the chance of being seen.

That day we spent a couple hours with some of Dan's close friends from college (who happen to live in Oklahoma - right on the way home). That visit was so good for our souls, though I know it was hard for them. As we got back in the car, I received a call asking me to interview for the Academic Advising Coordinator position at MSU that I'd applied for 6 weeks prior. Getting back on the road, I felt so cared for and at peace, though the road ahead was unknown.

That day I asked our siblings and our facebook friends/family to join us in praying a special 54-day (nearly 8 week) rosary novena. The first 27 days are petitioning for a special favor/grace, and the next 27 days are in thanksgiving - whether the gift has been granted yet or not. While our ultimate petition is for Dan's complete healing from cancer and deliverance from this virus (and we are not quite there), there are so many things that we can be thankful for - and that we can thank God for in advance.

Here's a major one: we are already into Dan's treatment plan. Though we were told it could take 1-3 weeks to get appointed a doctor, we were meeting with Dr. McCoy just 8 days after we first called the UM Cancer Center. She is great; very personable, caring, and giving of her time. PLUS, she's from IOWA!

We were able to get Dan's insurance set up within 3 days of starting. I called MSU's HR department that Thursday we were on the road and let the woman know about Dan's situation. Though coverage was 'retroactive' (meaning it started for Dan on August 1), setting up insurance when working at a university tends to take awhile. Usually, you sign up for benefits after you have university orientation -which usually happens 2 weeks after you start. (Thankfully navigating university benefit systems is not my first rodeo) She said that as soon as Dan was in the employment system, he could sign up for coverage - and then she would expedite the process to get Dan his actual member ID, etc. In the meantime, she sent me the coverage plans, so I could figure out what would be best.

At our first appointment with Dr. McCoy, she said she was surprised that Dan was not sicker than he was given the biopsy results. However, his lab reports that day came back with very low white blood cell & platelet numbers. This is one of the reasons that she moved forward with treatment. That day she also ordered 2 biopsies - one of a 'bugbite' (that had blistered; there's a really rare form of EBV-related, T-cell lymphoma that causes skin to blister when it's exposed to sun), and a bone marrow biopsy. She also ordered a PET scan to show the areas where cancer is.

The results: it really was just a bugbite! Dan does not have any lymphoma in his bone marrow and there were just a few T-cells present. The PET scan revealed 'hot spots' in Dan's neck and in a few lymph nodes on the back side of his abdomen. Though his spleen has been enlarged (the doctor said she could feel it on the 7th), there was NO cancer there! (which is HUGE)

Last week, Dan had a port put in which will allow for easy blood draws and chemo dispersal. Dan had his first round of chemo last Thursday-Friday-Saturday, which went well. He had some slight nausea on Thursday night and Friday morning, but has been eating like a champ, so far. On Monday, he got a shot to stimulate the bone marrow, and is having some slight 'bone pain'. This first round has gone well. The doctor said to expect fatigue to set in on Days 7-10 (which would be today through Sunday) - so we'll see how that goes. The doctor also said that the chemo effects are cumulative, so the last rounds are typically harder than the first.

In other news, we are under contract (again) with our house. Here's praying that all goes well for the next 40 days. ;) I expect there will be some other good news to report, too...

And, honestly, the last 4 weeks have been some of the hardest, yes - but, honestly, some of the blessed days of my life. I don't quite know how to put it into words - and it seems so contradictory...but, the sense of calling, of purpose, of peace - it's extraordinary. I thank ALL OF YOU for keeping us in your heart and in your prayers...because I think we have literally been carried by them.

So, please, join me now, in giving thanks for the next 4 weeks. Honestly, I have noticed in my thoughts just this morning a 'laziness' - to not say the rosary because things look good. Isn't that so our nature?

I've often scoffed at the Gospel message about the 10 lepers Jesus cleansed. Only 1 came back to thank Jesus - and he asks, "Where are the other 9? Weren't ten of you healed?" How quick we are to move on; to stop; to forget. Please, join me in this disciplined exercising of gratitude.

"More than ever, I find myself in the hands of God. This is what I have wanted all my life, from my youth. But now there is a difference; the initiative is entirely with God. It is indeed a profound spiritual experience to know and feel myself so totally in God's hands."  (Fr. Pedro Arrupe, SJ)

Thursday, August 20, 2015


The Gospel readings this week started on Sunday with those who'd been hanging out with Jesus saying, "Lord, this is a hard teaching!" That theme carries through the week.

On Monday, the young man asks Jesus what he must do to gain eternal life. Jesus instructs him to keep the commandments; 'all this I have done; what must I do to be perfect?' Jesus replies, 'Sell all that you have and give to the poor, and you will be perfect.' He went away sad because he was very rich.

Tuesday, we have the classic 'rich man vs. camel' parable.Yesterday, the parable of the vineyard owner who gives everyone a job and pays them all the same wage - regardless of how much/little they worked. Today, the king gives a wedding feast where the invited guests fail to show up, so everybody gets an invite with one condition: wear the clothes I give you.

For years, I have heard these parables and read them, and often thought, "I don't get it." or "this doesn't apply to me, I'm not rich." Tuesday, as we drove to our day's appointments, we listened to some different meditations on the readings (via the Laudate app - it's free, and I HIGHLY recommend it; I use it every day). One meditation focused on the question, "What are you carrying?"

"What are you carrying, dear Jessica? What burdens you so, today?"

Immediately, I pictured this in my head: me, struggling to carry Dan.

Dan has this game that he likes to play: the "I passed out & you try to get me to safety" game. I don't know how, but he is able to make his whole body just go heavy and he makes try to move him. It is impossible. Then he laughs and says things like, "if I passed out on you, you would move me like that?" And I tell him it's a stupid game and not funny and we shouldn't 'play' at things like that.

And that was this picture: me with all the weight of Dan upon me trying to move forward...but finding that I could not; that the weight, the burden was too much for me.

What do you need to give me so that you can walk? What burden do you need to surrender to my care?

But, Dan? Didn't you give him to me? You want me to let go?

Well, dear one, how are you doing with that? Does he enjoy being carried much? 

Well, no. He wants to walk his path.

So, does your effort to carry a man who can walk - and wants to it helping either of you?

Well, no. But, I want to help him. I don't want him to have to do this alone. I want to keep him from as much pain as possible.

I know you do; and I gave you the heart of a helper - and he is not alone. I am with him; you are next to him - but this path, you cannot walk for him. He must walk his path; you must walk yours. You cannot carry him, but I can. And, dear one, let me take this heaviness, so that you can walk beside him. Because, let's be honest, right now, you aren't getting anywhere but frustrated.

Yes. Yes, you are right. Oh God, help me to trust you. Help me to trust you with my most precious cargo.

Dear one, your beloved is my son, too. As dear as you are to me, and he is to you - so, he is to me. I know this road does not make sense, but trust that I will make this path straight. Trust that this path will bring about a greater glory than either of you can imagine. I do not promise easy, but I promise you will find LIFE. Do you believe that?

Yes, Lord.

Truly I say to you, it will be hard for one who is burdened [rich] to enter the kingdom of heaven. Again, I say to you that it will be easier for a camel to pass through the eye of a needle than for one who is burdened to enter the kingdom of God. 
I picture it like the entrance is only big enough for me...and if Dan is in my arms, we can't fit. That doesn't mean Dan doesn't get in - it just means that I can't bring him. He must choose of his own accord...and he must enter alone.

When the disciples heard this, they were greatly astonished and said, “Who then can be saved?”Jesus looked at them and said, “For men this is impossible, but for God all things are possible.” 
It is a hard teaching to swallow; it is an act of faith to surrender the ones you love, the identity you cling to for purpose and definition. Why is it faith? You trust that you will receive it back, that what comes next could be better, even if the road is hard. You trust that the One who calls you is faithful and will do just what He says He can & will do.

Thank God for Peter asking that question, we then all wonder as we take this step of faith:

Then Peter said to him in reply, “We have given up everything and followed you. What will there be for us?” 
Jesus said to them, “Amen, I say to you that you who have followed me, in the new age,when the Son of Man is seated on his throne of glory, will yourselves sit on twelve thrones,judging the twelve tribes of Israel. 
And everyone who has given up houses or brothers or sisters or father or mother or children or lands for the sake of my name will receive a hundred times more, and will inherit eternal life.But many who are first will be last, and the last will be first.”
[Matthew 19:23-30]

Tuesday, August 18, 2015

At the midnight hour

God judged it better to bring good out of evil than to suffer no evil to exist.
St. Augustine

It's interesting that Julie Bernal said to me that 'this is your baby, right now.' Because, this is my 4th sleepless Monday out of the last 5...and I wonder will I ever see a full night of sleep again. Isn't that what all new parents go through? 

4 weeks ago, I had a sleepless Monday before Dan's biopsy; that led to praying the Rosary and finding comfort in knowing Mary knew the pain & anxiety that I was feeling. 3 weeks ago, I had a sleepless Monday before we loaded up the house and we met with the hematologist. I spent that night researching docs at the U of M, praying that we'd be able to get in and move on with answers. 2 weeks ago, I think I actually slept. :) 1 week ago, I was up about this time thinking about my interview, presentation and hoping I would be coherent enough to string words together in a coherent, intelligible manner. 

Today, I don't know... well, I mean, I know today is port-day. Today, we get some education on what to expect with treatment, though we still don't fully know what's going. I think all of those who love and care about Dan just want to be doing something to make it better for him. None of us are really good at just sitting by and letting someone else take care of it...we want to help. 

People say things like, "Take care of yourself, so you can take care of others." Isn't that easier said than done? I think we all need someone to take care of us. We each have that person who allows us to just 'rest' - to just 'be' in their be undone, to be just enough as our little self. 

...and if you don't have that person, then I suggest you find a cat. In the midnight hour, they'll let you pet them while they purr on your lap...and they'll look into your eyes, and they'll know. 

Thursday, August 13, 2015

What I have feared has come upon me

This line from Job 3, perfectly sums up my reaction to Dan's diagnosis. When the hematologist at Mayo confirmed to us that Dan had a blood disorder which had become lymphoma, my fears were confirmed. Just a few days earlier, I had said to a friend at work, "I just really hope it's not cancer because cancer is scary; people die from cancer."

And isn't that our fear? Isn't that why we would wish, "anything but that?"

In those first moments in the room, while I cried and Dan held me (I'm not sure that he cried) was the confirmation of the fear. The scary thing had come upon us. It was here. This thing that I've pondered before, "I wonder how those people got through that", I was that person.

The first thing I said to Dan in that exam room was this: "From this point now, everything is new. We are new. Everything from the past; all those expectations that we may have had in getting married to each other, those are dead and gone. We are new; today we move forward in a new life - a new purpose."

While going up to the appointment that day, Dan said to me, "I don't think your life is better since you married me. I think my life is better - but I think that I have not delivered my end." I shared with him that in perfect honesty, I don't even know what my expectations were 4 years ago; in coming to peace with living in Tucson, I think I started to let go of expectations. Though, I hadn't let go entirely of all expectations; it is certainly no secret that I long to be a mom - and I have been mad at God, and yes, frustrated with Dan, that we are childless.

In that room, I realized that with cancer treatment (though we still do not know what our plan will be), fertility is often compromised/lost. I wanted Dan to know that I would never hold that against him. What he needed to know is that we are in this fight together; we are one - and God is with us. All things are new. Our expectation of today is that God has given us life & breath in this moment, and we will live in worship of Him for his gift. It is time to live our baptismal promise: to walk forward in this life in newness of life.

I called my mom shortly, crying...sobbing as I voiced my fears to her. She cried with me, and I could feel her longing to hold her child. I confessed to her that I had no idea how to proceed - how to call people...because I desperately wanted people to not just know, but to pray. But the thought of having heart-wrenching conversation after conversation was just too much. So, she promised to take care of that. Then, she shared with me a verse that had been on her heart that day from Joshua: "Have I not commanded you? Be strong and take heart; the Lord your God goes before you - and He will fight for you."

These words were like sweet nourishment to my parched soul. I shared that I had been in a drought of faith; skeptical of God's interest. ...and I reached out - and clung to these words for all the hope  that they contained; with all the faith that I could muster, "Yes, God; PLEASE, I beg of you; PLEASE, out of your great mercy - FIGHT FOR US. PLEASE, though I am the least of your faithful ones, PLEASE, FIGHT FOR US."

At this very moment, Dan had run into one of our friend's parents in the Mayo hospital lobby. This is just one of the many "God-moments" of providential 'coincidence'. He had told them of his new diagnosis, and as I walked up to them - she spoke, what I believe, prophetic words of hope for us:
Pray the rosary daily; ask our mother for help; her love is so great.
To Dan: I know that you have faith, that you believe - but through this, your faith will become active - loud, alive, vocal. It won't be something you keep to yourself anymore. You will share your story. Glory in your story; God is using this to bring redemption! This will be the end of your constant sickness. Complete healing will come.
You can't do your job the way you want to - a good job, if you aren't well. You must focus on your health.
To us: This will be the crowning glory of your marriage. [looking at me] This is your baby, right now. [then she asked, 'Do you have children?' I shook my head no (probably with tears in my eyes) and she said:] But, a baby will come - lots of babies. This is not the end. This is the beginning of your story. 

Saturday, August 8, 2015

A very good place to start

For our friends in blogland/Facebook who haven't heard, last Tuesday (July 28), Dan was diagnosed with EBV-related T-cell lymphoma. Last Tuesday was also the day that our house was loaded up and shipped to Michigan. Last Tuesday was also the day that we were to get started on our northeastern journey.

Since the diagnosis, I have meant to start writing about my thoughts, prayers, feelings, etc. Many of you have asked that we keep you informed, and I intend to do so.

The thing is, I don't know where to start. I feel like July 28 was eons ago...and, was just eleven days.

So, I guess, let's get you caught up on our lives. The last thing I wrote about was Dan's hospitalization in Houston in mid-March.

At the beginning of the week, I was so confident that we were going to leave Houston with answers. Instead, we just left with more questions. A list of doctors to follow up with in Tucson... ...and in Tucson, Dan had appointment after appointment after appointment. None came up with answers - none even seemed interested in finding answers - just "come back in 6 months." By then, I was fed up with that answer.

Dan mentioned to our primary care doc about going to Mayo after being diagnosed with an ear infection toward the beginning of May. He told us we could certainly go, but didn't seemed convinced that we really needed to.

So, in mid-May, I filled out the online form for Mayo's self-referral. Dan was scheduled for an appointment on June 17. (a month later)

Toward the beginning of May, Dan was invited to apply for the Academic Coordinator position with the Institute of Agricultural Technology/Animal Science at Michigan State University. Part of his duties would include coaching the livestock judging team, teaching, and advising the ag tech students in livestock management. While Dan has many dreams, being able to be part of the team at MSU would definitely fit into one. For us, it would allow us to be close to family - to become part of their lives, to watch our niece and nephews grow. The one thing that Tucson just really didn't provide for us.

Dan interviewed for the MSU job on June 12. He was offered the job on the 19th. He accepted by the 22nd. Our plans for a move just 5 weeks later started in earnest.

Dan's first appointment at Mayo was with an ENT specialist due to all the sinus infections he'd been having. During that visit what she noted (that I remember) was that she didn't think Dan was having sinus infections and 2) that Dan's case was definitely a complex one - and we should have had a longer appointment. She wanted us to see an immunologist and didn't think a visit to a hematologist was necessary.

The next week, I think he had 1 or 2 appointments at May for different tests - blood work, biopsies, CT scans. (honestly, the weeks have blurred together for me) During the first week of July, he went up to Mayo 3 times. On July 11, we met with an immunologist who said that we didn't need to see him, we needed a hematologist. But, we couldn't get one until, that obviously wasn't going to work. He also lectured Dan on the importance of not going to Michigan, and instead staying to focus on his health. Also, this doctor gave Dan a pneumonia vaccine...and he proceeded to have a weekend of fevers [because he doesn't have an immune system that can support this type of 'assault' - although the doctors didn't know that at this time]

On July 14, we met with an ENT surgeon who was going to remove a lymph node and a mass behind the lymph node. At that time, we were feeling super frustrated with Mayo because we felt like we were getting the run around. NOW, (hindsight being 20/20 and all) we see that they were running a hell of a lot of tests in a hell of a short period of time. At that time, the ENT team on Dan's case thought that perhaps Dan has an immunological disorder and this biopsy would help reveal that.

On July 14, we left Arizona for 6 days in Iowa where Dan was judging my county fair. While there, Dan met with my parents' chiropractor. Besides being a chiropractor, I think the best way to describe her is a 'healer.' Her assessment of Dan's health was right on with what his doctors' had been finding. Later that week, I met with her - and I daresay that her work on my emotional state has been one of the things that has allowed me to get through the last 11 days. In my meeting with her, she told me that Dan's systems are essentially "maxed out."

Dan's surgery was July 21. We ended up missing our flight out of Omaha on July 20...which caused a series of events that ended up with us spending the night in Dallas. While at the hotel in Dallas, I couldn't sleep...I was so nervous about the state of Dan's health, and honestly, afraid.

Now, for me, up until this point...I was just so angry. And, to be honest, this anger kept me from God. I just didn't feel like he cared. I felt abandoned. I felt like I was the only one who saw, who heard, who cared.

And that night, I couldn't sleep. I was wracked with anxiety. I got up to read - and I knew that instead I needed to pray. But, I felt like I was so far from God - and that He just simply couldn't understand the agony of knowing something is wrong with a beloved one. So, knowing I needed to obey this urge to pray, I started praying the rosary. It was Tuesday - the day of Sorrowful mysteries (for the non-Catholics, that's the passion of Jesus)...and immediately, I was in tears knowing she could identify with my fears. ...and, I slept.

That morning while flying first class to Phoenix, God revealed to me the role that I had in Dan's healing. For the first time in months, I believed that God was going to work about healing in Dan's life - a revitalization that we haven't yet witnessed. A fried of mine had been telling me that she saw Dan whole and healthy in Michigan - and, honestly, I couldn't share her hope at the time. I wanted it to be true, but was so skeptical that it could be. On that plane, I believed it could be possible.

The tumor that they removed from Dan's throat was about a square inch and was residing on the nerve in Dan's neck. Because of its placement, the surgery took twice as long - but the surgeon removed it masterfully.

That following Monday when we met with the surgeon (that, by the way, was the day that our entire house was packed up), it was apparent that she was very concerned. I am so thankful to God for her concern because she was able to get an appointment THE NEXT DAY with a hematologist. (which seems unheard of with Mayo) She didn't really fully grasp the report, but impressed upon us the importance of being seen by a hematologist at the University of Michigan (a research hospital) and not at a local hospital. We left her office thinking that Dan had either a blood disorder or lymphoma.

The next day, all our stuff was to be loaded into a semi; into our car and pick-up, and we'd give the ol' "Sayonara!" to Tucson. It was hot. We had a bunch of crap still not done from our need to leave the house Monday to get to the surgeon appointment. The movers packed up things they shouldn't have (and not what what they should have, we found out later)...and I was an emotional mess. We got everything packed up due to my sacrificial in-laws who ventured to Tucson on Monday in order to help us drive Dan's truck to Michigan, and my awesome best-friend, Anne Marie.

However, we got on the road to the hematologist late (and this time it wasn't my fault). So, I suggested we call Mayo to let them know. So, Dan does...and the receptionist says they cancel all appointments that are 10 minutes late. We will be at least 15 - maybe 20 minutes late. Dan tells her this is his only chance and he MUST meet with the doctor that day because he is leaving town. She said she'd call him back after talking to some people.

At this point, I have my "last" pissed off breakdown. I yelled at the injustice of it all; I hit my almost-empty water bottle against the steering wheel...and then, I did something that I hadn't done much of, lately, I asked God to get us in, to let us see that doctor.

...and Dan called again. ...and the receptionist said that whenever we would get there, the doctor would see us.

Thank you, Jesus.

...and the turning point begins here.