Monthly Archives: September 2013

We are still in the ICU

Jeremy had a rough night and a rough morning but things have improved slightly. So far doctors can’t find an infection so they are suspecting Jeremy caught a virus. The good news is that his white blood count made a slight improvement today and we hope that is the start of a good trend.

Jeremy continues to spike fevers. He was up to 103 a few hours ago. He does respond well to Tylenol and that seems to bring his fever down.

Thanks for your continued prayers.

~~ Angela

I so appreciate my boss

She released me from a meeting so I could drive into the city to be with Jeremy. He is weak but according to the nurse, he’s doing much better and he perked up when I arrived. I am so thankful I can be with him this evening.

He is not out of the woods. His fever got really high today and he is producing a ton of phlegm. Doctors are wearing masks and gloves in case Jeremy caught the flu. Otherwise this may be a really bad cold or another kind of infection. There is no sign of pneumonia so that’s good.

Thank you for your continued prayers. We are greatly encouraged knowing so many people are lifting him before the throne.

~~ Angela

Today is another hard day

I am unable to be with Jeremy and I hate that. He is still very weak. I stay in contact with his nurse – he spiked another fever today. Doctors have ordered a bone marrow biopsy to try to determine the cause of his weakness and low white blood cell counts. I wish I could be with him after the procedure…

Please keep praying for him. We did get good news that the chemotherapy was beating the cancer back. Jeremy remains in the ICU as he battles this fever, infection, whatever it is he has. I really hate seeing him so weak. Thank you for your continued prayers. We have been in a similar place before and his strength has been restored in the past. We pray for yet another positive answer to prayers today.

~~ Angela

Working through some chicken noodle soup in the ICU..

Met with a bunch of doctors. Neurologist says Jeremy looks good and he is no longer mentally impaired which means means any confusion he as was connected to the fevers/infection.

Oncologists shared good news, too. Thanks to the various “bumps in the road” we have had over the past four months, they have been able to keep in ongoing sense of how the lymphoma has responded to chemotherapy. The good news is that it is responding very well and everything is shrinking, which is very encouraging.

The present concern is that Jeremy’s white blood cell count remains very low. They want to do a bone marrow biopsy tomorrow to determine the cause. This could be related to antibiotics or an infection of the bone marrow. They need to identify the cause and/or his counts need to recover before they can continue with the last round of chemo.

Thanks for you prayers. We really hope you are all being blessed nod encouraged by our experience in seeing God work all these issues out. Thank you for praying and participating in that.

Jeremy should be leaving the ICU soon but will stay in the hospital as they continue his tests, etc.

~~ Angela

Left my love in the ICU

Left my love in the ICU to be home with the kids tonight and get them off to school/sitter tomorrow. ICU doctors are monitoring Jeremy’s fever. Pray it breaks and he gets his strength back. God will get us through this new “bump in the road”. Thanks for standing by us and praying us through this.

~~ Angela

Back t the ER at Rush

Jeremy was too weak to leave the couch, he briefly didn’t remember my name or his own so I called the doctor and was told to bring him in. He was too weak to get to the car so i drove up to our front porch. Thankfully my in-laws could help me, Karen is here at the ER and neighbors are watching kids. At the ER his temp is 101.8. Thanks for the prayers.

~~ Angela

Difficult morning so far

Jeremy is very weak and sleeping a lot. I always get nervous when he is this tired as I never know what is normal and what is alarming. He left the hospital quite weak so this isn’t a dramatic change but it is still concerning. Thank you for your prayers.

~~ Angela

Jeremy is home and resting comfortably

Normally the first few hours he is home are stressful as we juggle getting him settled while navigating the sometimes demanding needs of our 3 kids. Tonight was no less crazy but it was way more delightful.

We arrived back at the house around 5:15 with a delivery or antibiotics arriving shortly after…That requires a lot of information sharing, signatures, etc. Hot on the heals of the antibiotics was the arrival of the nurse scheduled to visit Jeremy at home every few days. She walked me through administering the IV antibiotics, etc. She was here nearly an hour and half. All the while, a mass of neighborhood kids were coloring pictures in our living room, playing with our dogs, watching the baby, sharing pizza and having a grand ‘ol time. Jeremy got settled quickly and I think all three of the kids are asleep. Time for a little movie just for me

We are hoping to make it to church tomorrow and maybe head to the Mexican Independence Day celebration in town. Jeremy is eager to see a movie, so who knows what we’ll be doing…

Jeremy was less steady on his feet today after getting brain chemo yesterday but we expect him to get stronger each day. Thanks for praying to that nod and that he is able to be home as long as scheduled. Thank you!!!

~~ Angela

Jeremy and prayer request update

Jeremy hasn’t had fevers for several days and it appears the antibiotics are working on the MRSA he contracted. However, he has gotten weaker and his white blood count has dropped a fair amount. The doctor believes this drop is related to the antibiotic so she changed his drug yesterday and it appears his counts remained stable and didn’t drop overnight, so they think that is a good sign.

Today they are going to do chemo to his brain (something they were going to do this past Monday but didn’t due to the fevers). They are also going to put a PICC line back in so he can leave the hospital with IV meds administered at home through that line.

As long as Jeremy’s white blood cells remain stable or increase, it looks like he will be released tomorrow. This is great news and we appreciate your prayers regarding this.

If he is able to come home, he will be home at least through Wednesday when we will meet with the doctor to schedule the next round of chemo. We are guessing he will be home most of next week.

Please pray Jeremy gets stronger and that his white blood counts improve. Pray he is strong at home, too.

We will need visitors for Jeremy during the day next week while I am working and he is home. If you are free Monday, Tuesday or Thursday during the day and want to hang out with him, let me know. Thank you!

~~ Angela

“Lord, you didn’t make for this.”

“Lord, you didn’t make for this.”

That was the prayer I prayed in the early morning hours of June 5 shortly after the doctors informed us that Jeremy had either leukemia or lymphoma, the exact diagnosis not yet clear. I had gone home at 2am to try to sleep but spent the night weeping, crying out to God to save my dear husband’s life. At times I’d think of other people we knew or heard of that had experienced a similar life-threatening scenario. I kept thinking of the spouse, often the wife, whom I always saw as having some sort of stoic grace, a calming presence in the midst of a storm, a comforter, full of compassion, full of patience, full of strength. I would think of these women who had gone through hell with the ones they loved the most and would think “I’m nothing like that. I can’t do this. Lord, you didn’t make me the kind of person who can provide what my husband will likely need in the days and months to come. Lord, you didn’t make me for this.” So, selfishly, I continued pleading for my husband’s life, his quick and painless recovery, so I would be spared living in a role I wasn’t equipped to play.

That wasn’t the first time I prayed that prayer. Years before at the end of my second year teaching in mainland China I prayed the same thing. It had been a difficult period for me. Young and naïve, I had expected to go overseas to live and work, seamlessly adapting to the culture, fitting in, making friends and having a deep impact. Of course nothing was farther from reality. I really didn’t have a deep interest in Chinese culture, I wasn’t disciplined in learning the language (after all, I was there to teach English) and I just assumed all the students coming to visit me to practice English would naturally turn into friends, eager to connect with me despite the fact I had no genuine interest in truly knowing most of them. As a result, the two years I was there were quite difficult. I had grand adventures and made a handful of friends but knew I wasn’t the best teacher I could be and knew what I was doing wasn’t “working”. Furthermore, I knew that even though I wanted to be all of the ideals I had in my head, I didn’t have the skill set or the personality to be those things. I knew I wasn’t made that way.

Nearing the end of the two year commitment I had made, I recognized I was failing and was utterly confused on what this meant for my life. I had always envisioned myself doing something like that and doing it well. At that particular point, I wasn’t even sure I wanted to finish my graduate degree or ever teach again, let alone live and work in another culture. So I lay awake during a dark night of my soul, crying out to God and wondering what to do next. I prayed, “You didn’t make me for this. And I’m OK with that. I just don’t know what You want for my life. I always thought this was it.”

I thought of the foreign teachers who had worked at that same school before me. Even though I had never met them, I knew they had made an impact. There was one teacher in particular that the students, the teachers, and even random people working in the local restaurants talked about with great respect and admiration. Students would show me pictures of this teacher and tell me over and over again how he spoke excellent Chinese, helped them practice for a particular exam or spent hours talking about Chinese culture and history with genuine enthusiasm. I knew that teacher had to have the special set of skills I was lacking: the genuine interest in language and culture, the ability to talk with people and somehow make them feel seen and cared for, and the ability to put relationship above task, going the extra mile to meet someone’s need.

So I continued my prayer that night. “Lord, you didn’t make me this way but if this is the kind of life you want for me than You are going to have to give me the skills and characteristics that I lack. You are going to have to give me a complement. You’re going to have to send someone into my life that has those skills. You’re going to have to send someone like this Jeremy Mains guy everyone is always talking about. I need that in my life if this is what You want for me.”

When I met Jeremy six months later I didn’t immediately recall that prayer nor expect to marry him. Quickly though, I saw all of those things for myself that so many others had already know about Jeremy. Quickly I saw how everything he was made everything in me better. He is my better half and I love him dearly for it. I need Jeremy and all that he is in order to be all that I was meant to be.
And that’s how the Lord answered that prayer from long ago. I’ve never forgotten it.

When I prayed that same prayer again on June 5 of this year, I remembered how God had worked it all out for me 11 years before. And I thought of how much God had blessed Jeremy and I during the past 9 years of marriage and knew He had worked this lymphoma scenario out for us long before we ever saw it coming. So this time when I prayed, instead of thinking of what I needed to complement who I was in order to get through this, I was quickly reminded of the skills I had been given that make me who I am. As strange as this sounds, I had a very keen sense that this is precisely what I was made for. The skills I possess are exactly what are needed to get through this, skills such as decisiveness, clear-headedness, taking the initiative, strategic thinking and the ability to thrive under pressure. According to the Myers-Briggs test I am an ENTJ or the “Field Marshall”. While someone with a personality like that doesn’t sound like an angelic, relationally-driven teacher working cross-culturally, or even the calm, patient, graceful image I have had of spouses of cancer patients, this personality actually works quite well for someone fighting such an intensive and difficult battle as we have experienced.

I recognize that Jeremy is at the center of this war. At the same time, I am at the command post. I’m coordinating all the other battle fronts – things at home, things with the kids, issues with insurance, Jeremy’s needs and wants versus the needs and wants of others trying to be helpful, and the more gruesome mental, emotional and spiritual battles. In many cases, Jeremy doesn’t even know some of these battles are raging as his energy is focused 100% on beating lymphoma. That’s why he needs me where I am, at the command post to be the Field Marshall I was made to be.

The Field Marshall isn’t a terribly sexy character, and often isn’t even likable. It requires a kind of cold, aloofness in order to remain steady, not get distracted, stay the course, juggling the different issues on all the different fronts. I’ll be the first person to admit there are a lot of things in life right now I am not doing well. Someday soon I’ll probably write about all of those things just to clear my conscience. Tonight I am just trying to find encouragement in claiming this role, one that I don’t like or want to be based on ideals I have always held, but one that in the deepest parts of me, I do kinda like. By recognizing how God answered my prayer in China by giving me my complement, I have the ability to recognize that He made me the way that I am so that I can do this now. In the midst of this lymphoma crisis I can either be angry and frustrated with Him for it or claim the gifts and tools He gave me to get me through this.

Sometime in June while Jeremy was undergoing the first round of chemotherapy and the stress of our situation was keenly felt, he made a sweatshirt for me with the picture of a lioness and the words: “Ntwadumela: She who greets with fire”, a reference to a National Geographic documentary Eternal Enemies Lions vs. Hyenas. Ntwadumela is actually the chief lion who sits back while the hyenas harass the pride until he eventually has enough and runs swiftly from the distance and quickly pounces on the hyena matriarch, immediately ending the battle. When I have been the most discouraged and tired, Jeremy has encouraged me by calling me this pet name, Ntwadumela and frequently tells me that’s what he needs me to be. This became even more evident to me a few weeks back when he was having those scary neurologic issues where he didn’t know where he was or how many children he had. Once during that period when I asked him if he knew my name, he looked at me and calmly said “Of course, you’re Ntwadumela”.

While I never asked to play this part and never expected it, I know now that I was made for it. And I’m incredibly grateful that Jeremy loves me for it. God knows how much I love him for all that he is. What an awesome gift.

~~ Angela

Praise is much more profitable than unceasing worry

This week, at the insistence of family and friends, we have taken a break from the cancer road, and are back at the Stratford Festival in Ontario, Canada–a place that has afforded us aesthetic and intellectual solace for almost four decades. Worrying about Jeremy and Angela hardly ceased with the some 450 miles between us. So as I woke off and on last night, I deliberately turned my thoughts to prayers of praise, giving our son and daughter-in-law and grandkids to the Heavenly Father who is much more concerned with their well-being than we could ever–impossible as that thought seems to be.

I felt this praise effort was much more profitable than unceasing worry.

Today we had breakfast at the Crown House with our hostess and friend and with new guests, one of whom had been a policy analyst for the Canadian government. Fascinating conversation. I read several chapters in a book I’ve had for over a year, “Plan/bee: Everything You Ever Wanted to Know About the Hardest-Working Creatures on the Planet.” This is our second year of hive-keeping; I need to know what I am doing! (We lost our bees over the winter last year–but then so did Martha Stewart.)

Thank you family and friends for your gentle insistence on self-care. The last thing our overloaded family needs is a drooling set of aging parents! Breaks from the stress are important, and being plunked down into the middle of beauty always centers me and makes me a better person.

Did you know that each hive contains 60,000 to 100,000 bees? Did you know that in order to keep their stored nectar and ripening honey from dripping out, bees create honeycomb cells, which point upward by about 13 degrees? Learn and wonder . . .

“Othello” this afternoon, then a free evening for a leisurely dinner.

~~ Karen Mains 

Spent a little time in the hospital last night with Jeremy

Spent a little time in the hospital last night with Jeremy. He is responding beautifully to the meds and didn’t have a fever all day. If that continues, he’ll be released soon. There was some discussion about keeping him there until Thursday so the docs can use today to do the procedures they do as “outpatient” while he is impatient just to save some time and trips. We’ll keep you updated on his progress.

We continue to be in awe of people’s grace and mercy towards us. Jeremy’s visitors yesterday went above and beyond to care for him and comfort him. They bought him a special pillow to make him comfortable, spent hours massaging his feet and shoulders and gave him the special gift of companionship. It is beautiful and humbling to witness. These folks, and all those that have entered into this battle with us, are our heroes.

After reflecting on all the special things this family had done for Jeremy, he said to me last night: “you know, before all this, I guess I would have expected a few people to be kind and a smaller number to be extraordinarily kind (in a crisis),I never expected such an extraordinary number of people to be so extraordinarily kind.” What a sweet and humbling thing to experience.

~~ Angela

He is bored but has enjoyed having visits

I just got an update from Jeremy and the details are a bit fuzzy, so don’t hold us to this, but here goes:

Jeremy has been spiking fevers that have resolved and then spiked again. We need to wait 24 hours for him not to have a fever to plan the next steps. He said (and this is where the details are fuzzy), that the doctors identified a culture in the blood as MERSA (he said, is there something called MERSA? I think that’s what the doctor said) and that it was resistent to most antibiotics. However, there is one antibiotic that he was taking at home (thanks to the last round of infections he had) and only stopped taking on Sunday (shortly before his first fever) that seems to work, so he is on that. Hopefully this will resolve quickly. The good news is that he is on the upswing in terms of building his immune system so this infection is not as scary as previous ones, although it is still a hurdle to overcome.

We don’t really know what will happen next. He is supposed to start his next (and hopefully final) round of chemo on Monday. There was talk of delaying that a week to give him a break but I know, from previous times, there is also a desire to stay on track. Right now I just want him to be well and healthy and I know that chemotherapy has lead to issues for him.

I am so thankful he is doing well in spite of the fevers/infection. He is really bored at the hospital but has enjoyed having visits. I miss him terribly but I feel good about how he is doing. I am needed at home more now that the kids are in school. We are so blessed by family and friends spending time with him – Doug Timberlake spent last night with him and the Azpicuelta family is with him today with Jonathan spending the night – a great blessing. It is so encouraging to Jeremy to have company. I am grateful to Melissa Mains Timberlake who is watching my kids this evening so I can make a quick trip to the hospital to see him. We are really blessed.

~~ Angela

Jeremy continues to fight off fevers

Jeremy continues to fight off fevers. He is still at Rush but doing well in general. We are waiting for more information from the doctor regarding the fevers and treatment plan. We are also wondering if they will move ahead with his fourth (and hopefully) final round of chemotherapy which was scheduled for sometime this week or next. They won’t begin that if he has an infection or fevers but if they are able to start it, it will keep Jeremy in the hospital for 5 additional days.

Thanks for your continued prayers. Jeremy is in pretty good shape overall. My main concern is that he keeps his spirits up despite the unplanned hospital stay.

~~ Angela

Jeremy has been admitted to Rush

Jeremy has been admitted to Rush. Nothing alarming at the ER. His fever continued and they started him on antibiotics. Don’t know how long he will need to stay there. Pray he stays in good spirits. He told me he was bummed because his “vacation” with his family was cut short. In spite of the fever, he seemed quite like his ole self so I am not too worried right now and am glad he got in for care. Thanks for your prayers.

~~ Angela

We are back at the ER

After a good day and great few days we are back at the ER. This time we called the doc first and bypassed CDH and drove to Rush this evening. Jeremy has felt more weak this afternoon, had chills and a fever, so he is here just to be sure there’s nothing going on….

I am grateful for a wonderful week at home with him, grateful I had finish prepping our house and school gear for tomorrow (Eliana’s second day of school, Nehem’s first day of preschool) and grateful Randall Mains was able to join us on the drive to the city. Finally, I am incredibly grateful that Jeremy easily agreed to go to the hospital even although it could mean he gets admitted again.

Jeremy is hoping he won’t have to stay. If you are awake, we’d appreciate your prayers. It is going to be a long night.

~~ Angela

This girl makes her parents proud!

This girl makes her parents proud! So excited to start school, she eagerly waited for the bus, and then waited patiently in line with her new classmates before starting her first day of kindergarten. So confident, with a wave she blew and kiss. So glad she is ours and starting this new phase of her life…

~~ Angela

 

My heart is overflowing with gratefulness

What a special day so far. My heart is overflowing with gratefulness. Jeremy is acting the strongest that I’ve seen him in quite awhile. He is still a bit weak and taking naps but he has been walking around the street, going up the stairs without a problem and doing really well. He is fully participating in our family life and it is so great to have him home.

Today was orientation at the local preschool as well as for kindergarten. It was so sweet having Jeremy’s dream of raising bilingual children keep moving forward in spite of his time away at the hospital. Nehem is in a bilingual preschool that has a similar model as the dual language program where class will be taught in Spanish three days a week and in English for two days. It was wonderful having Jeremy at the orientation since it was done completely in Spanish.

Eliana will be attending full day kindergarten in the dual language program and is super excited. Tomorrow is the first day of school for her. Nehem starts Monday.

Jeremy was totally into orientations and is thrilled with the schools, the teachers, everything. I am so happy to share this with him…and feeling a bit overwhelmed with all that needs to be done to finish getting everything ready but it will come together soon enough.

We can’t say enough how sweet these days are and how grateful we continue to be. God is good.

~~ Angela

Jeremy is home

Yesterday a lifelong friend called on the phone to see how we were doing, as he has done nearly every week or so since our son came down with lymphoma in the early part of June. I marvel at this consistent compassion. Like most people, I’m more in for the short haul. Concern at the beginning of someone else’s disaster; then forgetfulness for the long, desperate pull. At the end of our long-distance conversation, this friend prayed for David and for me, and wept as he was praying. I feel deeply for others–the gift of mercy often propels me despite my busyness–but I can’t think of how many times I’ve really wept for the ones I love going through personal distress. I consider this to be a God-like attribute–to feel so deeply another’s pain that we are moved as though it was our own. Thank you dear friend. You and your wife have been a model to me of a deeper charity that I aspire to achieve.

Jeremy is home and has a week and a half before beginning his last round of chemo before the stem cell implant procedure begins. Pray for safety and joy in the normalcy of family life and strength as he recovers from the past three months of traveling the cancer road.

~~ Karen Mains

Jeremy is home now and doing great

Jeremy is home now and doing great. I am in need of people willing to stay with him while I am away at work. While he is doing well, he is still a bit weak and prone to falling when he is tired. I just don’t feel great about leaving him alone without someone with him. He is independent enough, so anyone spending time with him could chat with him or bring work to do while he rests or works in the computer. Occasionally he’ll need to be driven to the Lisle clinic for lab work, but pretty much he’ll just be hanging out at home.

I work Monday through Thursday and the occasional Friday. Right now I have one person committed to hanging out with Jeremy on Tuesdays. If you can do a day or half day please let me know. We need folks with Jeremy from 8 am until 5:30.

This is a short term arrangement, perhaps just this week and next for now. If you are interested in hanging out with Jeremy a bit, please let me know. You can also sign up through lotsahelpinghands.com. If you are sick, have been around sick people or had recent vaccinations, it is best not to see Jeremy during this time.

Thanks for your help!

~~ Angela

We feel richly blessed

Dear friends,

Thank you to everyone that is praying for us and caring for us. We feel richly blessed.

Now that Jeremy is scheduled to come home, we’ve heard through the grapevine of folks wanting to get involved and support Jeremy through this. If you are in interested in connecting directly with us, the best way to do that is by getting in touch with me (Angela) directly. I am arranging for visitors to come to our house to see Jeremy. If you want to be involved in another way, I can let you know our needs. There is an established website and calendar through lostahelpinghands.com that allows us to better organize our days and weeks. In general though, contacting me or going through our calendar is the best way to connect with Jer in these days and weeks ahead.

Thanks so much for your ongoing prayers!

~~ Angela