At the encouragement of several of our loved ones, I'm starting this site so that we can keep our friends and family updated on how Paul is doing.
In the late afternoon on August 24, I was standing in the kitchen making mini coconout cream pies. It was the second day of school for the kids and the first day of preschool for me -- I guess the mood just struck. I was sprinkling toasted coconut on top of the tiny little pies, really not thinking about anything too serious, when Paul came into the kitchen. I looked up and those next few moments now play in slow motion in my memory. He said he'd gotten a call from the doctor and that it was not good news. Lymphoma.
That was the start of our journey, although really it wasn't. It was just the day that the symptoms from the previous 9 months got a name. I'll give the backstory for those of you who may not be aware of it. Paul started feeling ill last December with symptoms that appeared to be a typical virus for that time of year. He went to the clinic and was told there was nothing to be done - that the virus had to run its course. Not an uncommon event in December to feel under the weather - we didn't think a lot of it, but the symptoms didn't let up. Pretty soon we were into January and February, and there was no consistent relief. He'd have a day here and there of feeling some better, but overall it continued through the winter and into the spring. He was very fatigued and would get the chills and then break out in a sweat.
Fast forward to the end of May. He visited our local Physician's Assistant (we're 45 miles from the nearest hospital - 30 miles from the nearest clinic) at the clinic in Circle and after some blood work, he was diagnosed with Acute on Chronic Mono. It wasn't good to hear that but it was good to feel like we were getting an answer after a long winter and early spring of him feeling crummy. Of course that wasn't what was going on, but as the saying goes, "You don't know what you don't know."
Paul and I were both out at Eastern Montana Bible Camp during the 2nd week of June for junior high camp. Paul was assistant director, and I was helping in the kitchen. Looking back, that is the week when I remember him starting to talk more about his legs aching. It was a full week and definitely took a lot out of him. But we were still going by the mono diagnosis and figured that he'd rebound with some rest. But he didn't. The rest ofJune and July were rough with symptoms ramping up considerably. Then Paul started to slowly feel better once August arrived. Nothing dramatic, but we both noticed that his energy levels seemed to be slowly improving. But we were still doctoring in Circle, and our P.A. suggested that we see the infectious disease doctor at Billings Clinic to see if he could shed light on this "mystery virus."
On August 8 we had that appointment. That doctor suspected the same diagnosis -- he said that when you get mono in your 40's, it can be really bad. But he ordered more blood work just to see if anything had changed and also mentioned the possibility of doing a bone marrow biopsy if he thought it was necessary . Those labs came back, and it showed low levels of white blood cells, platelets and hemoglobin. The doctor did order the bone marrow biopsy, and Paul was back to Billings for that procedure -- from the sounds of it, that test is rough! The results of the biopsy ended up being sent to Mayo Clinic because the Billings lab wasn't able to interpret it. And Mayo Clinic's lab found evidence of lymphoma in Paul's bone marrow.
We went to Billings for a PET scan on August 30th. We sat in a small office with the hematologist, Dr. Jesus Fabregas, who had received the PET scan results and shared with us the grim news that an aggressive form of non-Hodgkins Lymphoma was dispersed throughout Paul's body. However, the doctor also said the cancer is potentially curable with chemo and that there was reason for optimism. We learned at a later appointment that it is Stage 4.
Paul had a spinal tap on Friday, Aug. 31 along with a small dose of chemo. The spinal tap was done to determine if the cancer was in his spinal column or brain. He developed spinal headaches after the spinal tap -- those headaches were pretty hard on Paul. The doctor was concerned about the headaches and ordered an MRI - we had that done in Sidney. Thankfully the spinal tap and MRI results were clear - no cancer in the brian. His lungs and liver are also clear. The headaches were taken care of with a short-term steroid that Paul is not taking anymore.
Because this is a blood cancer, the tumors are liquid, so surgery isn't an option. Chemo is the recommended treatment and the regimen is 6 treatments, 3 weeks apart. His chemo regimen is an especially aggressive, potent one -- known to be particularly hard on the body. But, it has to be to fight the cancer. Paul has had two infusions so far and will have 4 more; if his blood counts stay high enough and we stay on schedule, his last infusion should be right before Christmas. There's a Cancer Center in Sidney, and we're grateful for that. We only have to travel 50 minutes instead of the 4 hours to Billings for each infusion.
That brings us to the present...six weeks into this journey. It feels like it's been more like 6 months. Life has changed a lot, but in other ways we're just doing normal things. The kids are busy with school and activities. Isaac is a senior, Laurel is a freshman and Josh is in 7th grade. They're all handling the new reality in their own ways -- sometimes with tears, sometimes with silence, sometimes with talking and questions. Kinda like how most of us process grief, I think. And I'm in my 6th years of teaching preschool here in Richey. I'm grateful for a flexible, caring boss and a substitute who is very willing to cover for me whenever needed.
Paul lost most of his hair by the last weekend in September. His facial hair is gone, but he still has eyelashes and eyebrows -- interesting that it didn't all go. He says he can get ready now in 2 minutes. No hair combing, no shaving! He is still working, but he has pulled back some. He tires more easily and is experiencing what we've heard referred to as "chemo brain." It's just a normal side effect of those drugs, which are doing a good thing in fighting cancer, but they also wreak havoc on your normal systems, and normal thinking/communication capacity. For now, he's going to be preaching about half-time. Because of his suppressed immune system, he has to be careful about being around crowds -- especially to not be around sick people. So for this year, he's not leading the Wednesday night youth stuff at church. Thankfully there are people who have stepped up to fill in the gaps for that.
So the question, "How are you guys doing?" comes often. The answer varies, but yet it stays the same. We're ok and are going to be ok. Not because I'm assured of an outcome that I want, but because we're finding that God is faithful to do what he says he'll do. He'll stay with us and not leave us and He'll provide for our needs every moment of every day. We do the day we're in and don't look past that. For the most part that keeps the sense of being overwhelmed away, but to be honest, there are still days when it all presses in and the tears fall. Or you feel mad, or just unsettled and off. But when the dust settles again, you realize there's still only one thing to do that gives peace or strength. Look at the Lord. Remember what you know to be true about Him. Trust that though He hasn't chosen to calm this storm, He will be our refuge in the midst of it.
We've received a lot of cards and many gifts from people we've known from our college days, our New York/New Jersey people, our Kansas people, our Iowa people, our Montana people and of course our family members scattered around the country. Thank you so much, each one, for your caring texts, facebook messages, and cards in the mail. There are hundreds of people covering Paul and our family in prayer and that is a huge comfort. That is what we need most from all of you who care about Paul -- your prayers for Him.
The next infusion date is scheduled for October 19. The days between now and then should bring improvement in how he feels. He won't be running any races, but if it goes like the last cycle, he'll rebound and feel pretty decent in the week or so before the next round. I'll plan to use this site for updates from here on, and future posts won't be this long!
After a day of appointments and tests we got the great news that Paul is in complete remission! Or CR2 (complete remission 2) as Dr. Pederson says for those who have already been in cancer remission before.
Thanks to all who have walked this journey with us through your prayers and support. Really thankful for this good news and for God’s mercy on Paul!
Going forward, there will be check ups/lab work done every few months and a one year post transplant checkup at Mayo. Still need to be careful with crowds and avoid getting sick as much as possible. But it’s hugely encouraging to get the news that everything Paul went through did what it was supposed to!