First of all, I want to share how completely overwhelmed both Kevin and I have been by the outpouring of love from friends and family, with financial contributions, meals brought over and even sent from afar, gift cards, boxes of homemade cookies, friends showing up to clean our house! All of the sweet notes and cards, both physical and virtual have meant so much to us. It’s been a busy, tough month. I can’t believe I didn’t manage to post ANYthing this entire month! I have at least five different draft posts started but never finished, and now they all seem horribly out of date. Ah well, thank goodness there are no blog police.
So the latest “news” is that we found out a few weeks ago that Kevin would not be eligible for the clinical trial after all. This was “discovered” right after Kevin had been given costly PET scans and other tests that were only necessary for the trial. We’re pretty sure we won’t have a problem with insurance paying for them, but it’s annoying and frustrating that there was such waste, nonetheless. In addition, Kevin would not normally have had a PET/CT scan so soon after radiation, and it caused some needless worry for us, since there were hot spots showing up on the scans that took a few days to determine were just residual markers from radiation. Not fun.
Basically the reason that he didn’t qualify is because he wasn’t able to start the trial within 120 days of his first surgery. I knew that he wouldn’t when we first found out about it just by calculating the dates of his surgeries, the radiation he was going to have to have, and the various recovery periods, so I was more than a little annoyed that somehow the woman managing the clinical trials had “miscalculated”. I’d asked her about it early on and she said it would be fine because there was no way to get it all done in that time and so they’d have to take him and that it would be all fine. But whatever, what’s done is done. We knew he’d have a 50% chance of still getting the standard of care (i.e. the more difficult drug) anyway, so now we at least knew with 100% certainty what would be happening. So, we immediately changed gears and started preparing for interferon.
I was more grateful than ever that my parents had bought Lila a ticket to come out for the first several weeks of the high dose phase of treatment, and she arrived last Thursday, ready to help out. We had a lovely weekend hosting a neighborhood meet and greet at our house, cooking a meal to bring to some neighbor friends who’d just had a new baby, enjoying my niece’s 2nd birthday party, and even hosting our friends Rob and Rachel’s daughter’s first birthday party on Sunday afternoon. We don’t normally book ourselves quite so full, and it was a little tiring, but I think both of us were glad to just be busy instead of sitting around thinking about Monday.
Saturday evening we held a time of prayer and scripture reading at our house with some folks from our church and really felt like our hearts and spirits were prepared for whatever would happen on Monday. We still didn’t really know what exactly would happen, how long it would take, or what kinds of side effects he would have. It wasn’t for lack of asking, we just kept getting the same response… it depends, there’s no way to know until you start, everyone responds differently, sometimes it takes less time, sometimes longer, it all depends, etc. Arghh!!! For two people who like planning, this was definitely frustrating for us, but also such a lesson in trusting in our Father completely one day at a time. So, knowing that there was nothing else to think about, we put it out of our minds.
For me, I think I’ve finally realized that all my cleaning and organizing and putting systems in place in our new house has been my way of coping. I definitely felt motivated because I knew if things got crazy, I wanted there to be enough margin for things to get messy and not completely fall apart. But really, it was about having some sort of control and order over at least one aspect of my life. In some ways, I was like a mad pregnant woman over the last few months, furiously nesting, cleaning, sorting through boxes of junk, and organizing closets and cabinets. But the result is a house that feels peaceful and calm, and my hope is that we can keep it that way for this month and just focus on rest and recovery.
I didn’t really sleep at all Sunday night, partly from having so much on my mind, and partly because my children kept waking up. Poor things, I think the pollen has gotten to them as much as me, and unfortunately it’s frowned upon to give zyrtec to one and two year olds. At 6AM, we got up, showered, ate a good breakfast, and then headed over to the hospital. Kevin got checked in and had lab work done, and then we had to wait an hour for those results. We found out that he will have to do that every day. He met with his doctor, who he will meet with each Monday for the next four weeks. Then he got moved into the infusion center, a big room filled with hospital grade la-z-boy recliners (they’re really made by la-z-boy!). They had already put an IV in his arm, so after more waiting (there was a LOT of waiting) they gave him some fluids intravenously for 30 minutes, then the interferon drug for 20 minutes, then another 30 minutes of fluids. As best we can tell, this will be the routine for each day. As I write this though, we are at the clinic for the second day and they decided he needed fluids for 45 minutes before the drug this time, so who knows. Anyway, we were done around noon, and I dropped him off at his office to go to work. He said he had a slight headache and felt a little crummy, so we were hoping that we might have gotten lucky with limited side effects.
I drove home, and almost as soon as I pulled up to the house, Kevin called me and said I needed to come back and get him. I turned around and headed back to pick him up, knowing he must be feeling pretty bad to be willing to go home from work (he’s a pretty tough cookie). He was waiting for me with a co-worker who’d walked him down and carried his bags, so I knew it was bad. He told me he’d gotten hit with everything all of a sudden, nausea and vomiting, chills, and aches. We both felt more than a little discouraged that he was feeling this rough the first day (we were told the effects were cumulative, so this wasn’t a good sign for where we were headed). I got him home and got him some of the anti-nausea medication. What followed was more nausea, chills, wanting tons of blankets and a space heater , and finally sleep. After a good nap, I was surprised when he came downstairs, feeling completely better and hungry. Either the effects of the interferon wear off quickly each day or the anti-nausea drug works very well. He took the drug right before treatment today to hopefully prevent such strong effects today, so we’ll see. Please ya’ll, continue to pray that the side effects this month are mild enough for him to work. He needs to work for income of course, but also wants to work. It gives him something to do and also a sense of normalcy. He is by no means a workaholic, but enjoys his job and works hard at it, so that will be the hardest part for him if he is not able to.
So here we are today, hanging out at Emory Winship Cancer Clinic Infusion Center. I guess it will be our weekday home for the next several weeks… we’d both personally prefer a cruise, but it’s nice to be spending so much time together right now nonetheless. The kids are doing well and Lila is pretty much running the house. I am struggling to not let the challenges of our neighbors and our calling to ministry on our street interfere with my primary job which is to care for my husband and family, so please pray for me in that area.
We will keep everyone posted as this phase of the journey continues, and again know that we treasure all of your gifts of prayer and encouragement and everything else. Thank you again, all of you, for walking this path with us.
Being carried in His arms,
Rachel and Kevin