It all started Labor Day weekend. My husband had not been feeling well for, oh, about 2 or 3 weeks. Shortness of breath, tightness in his chest, fatigue. On Sat. of that week he mowed the yard (riding mower) and usually finishes up with weed-eater, etc. the next day. It didn’t get done cause he didn’t feel like it. (That doesn’t usually matter to him–he would finish no matter what.) Monday, I noticed his feet were very pale looking and then later that evening, his hands were the same way. He had already decided to go to our family doctor on Tues. but decided that I would need to drive him. (Were there any red flags waving here? Not really.) I thought maybe it was COPD or something with his heart. He thought he’d just get a pill and go on home. The nurse took his vitals and did an EKG. Asked him if he had a pace-maker?? She went immediately out to get the doctor and he came straight in. (Usually have to wait your turn.) He sent us to the ER next door so they could get some lab work done and results back quicker than he could. We went straight away. * update at the end
At the ER, blood work was done and another EKG. The EKG showed nothing abnormal. The blood work told us his white blood count was at 90. That’s thousand. Normal is 4-11. Also, his hemoglobin (carries oxygen to the different parts of the body) was at 4–normal is 14-18. Both of these explained why he felt so bad and couldn’t get his breath. Also, explained why, when they put the sensor on his finger to monitor blood oxygen, it wouldn’t register.
It also indicated leukemia. The ER doctor discussed his case with an oncologist in the next city where he would be transferred. He told him to stabilize him and get him to MD Anderson. They gave him 3 (at least) units of blood and platelets before they would even transport him. He arrived at MD Anderson around 1:45 am and hasn’t been home since.
After the first few days and a bone marrow biopsy, it was determined that it wasn’t leukemia but lymphoma. None of his lymph nodes were affected though, only his spleen and it was swollen so much it was pushing on his other organs. He began chemo therapy a week after all this started. Side effects have been few and mild. The last chemo he was given was so strong (they have to give it by itself) that every time there was a side effect (severe chills and fever) they had to stop it and let his body recover for 30 minutes to an hour. Then it would start up again. This went on for 18 hours. He was exhausted mainly from lack of sleep. They came in every 15 minutes to check his vitals, then every 30 after the first hour. Every time they stopped it they had to go back to the every 15 minutes. The doctor says that the next time he has it, it won’t be as bad. He only had the chills 3 times.
Except for a couple of days here and there, I’ve also been in Houston, first at the hospital with him for two weeks and then in a hotel. We have set up temporary housing in a hotel that has suites–a separate bedroom and a full kitchen. This is the second one we’ve been in and it has wonderful, caring staff and free laundry and it doesn’t take too long to get to and from the hospital.
We go back and forth to the clinic at MD Anderson every other day or so. Some weeks every day, others maybe twice. He has blood work done and then a visit with an APN (advanced practice nurse) to discuss the lab results. Sometimes he has a transfusion of platelets. Those are the long days. Some days we’ve been there from 9:30 or 10 in the morning till 7:30 at night. So glad we decided to stay here instead of driving back home.
We thought 2 weeks ago that he’d be starting his second round of chemo but the doctor wants his platelets to be higher. This week they are finally getting there and he hasn’t had any platelet transfusions in almost 2 weeks. That means his body is making its own now. Hoping the blood work and visit with the doctor on Monday will indicate that he is ready to go on with the chemo.
We have learned several things through this.
1) Never plan anything around a schedule. It just doesn’t happen that way.
2) When retirement finally comes we’ll be okay. 🙂
3) The only normal we have that is like BC (before cancer) is that we love each other.
4) We have some awesome friends that have provided some financial, emotional, spiritual support that we couldn’t do without. We are blessed.
Oh, and a student of mine asked “Did you cry?” That first night in the ER after we heard the word “leukemia” and one night in the middle of the night early on when we realized: this is the new norm. Am I worried? No. We take it one day at a time. Go with the flow. Live and learn. And I know he’s in God’s hands.
Have I shared everything I had in mind? Probably not. That’s all for now though.
All the technical stuff but none of the personal. Maybe another day, another post.
* Went to visit our family doctor and asked him about the EKG and what they saw on it that wasn’t on it in the ER. He said it wasn’t the EKG. It was just looking at him. “Thought we were gonna lose him.” We didn’t. It’s not time.