Jonathan is on a random rotating schedule of a few different types of chemo. His very first round did not go well in terms of side effects. His subsequent rounds went much better. Now this week we knew we were starting our rotation again from the beginning, so now we know more about what to expect.
Last time Jonathan received this type and dose of treatment he became very sick. Then once he began to recover he began to suffer from neutropenia, so he was readmitted to the hospital. So I began to research and discovered a few things. First the obvious, we needed way more options of anti nausea meds. Second, his Neulasta shot was delayed by 2 to 3 days. A Neulasta shot is a medication given to increase your white blood cell counts. Almost like a rescue medication for your immune system after doing chemo. Last round of this type of chemo, Jonathan was admitted to the hospital on a Wednesday, and was not released until Friday afternoon. He then had to wait until Monday to get this shot at the doctors office. (They do not administer this drug at the hospital... not sure why) As I read through pages upon pages of info given to us, I discovered that this shot is to be given no less than 24 hours after your last dose of chemo. So after a discussion with the doctor about this possibly contributing to his neutropenia we decided to admit Jonathan to the hospital a day early. This would allow him to be released on Thursday, and get his shot at the oncologist's office on Friday.
So this time around, I called the charge nurse, Jonathan got the upgraded suite, and we walked right in, no waiting. FYI this is the end of life room (probably not the formal name), but it is a very nice room. It has a frig, microwave, coffee area, dinner table and a carpeted play area for the kids. Becoming a frequent flyer and getting to know these nurses has its perks. So he got started on chemo Tuesday at about 3:00. After a few hours it was a quick reminder how hard this particular type is on him. His color changed to very pale, his eyes became red and then the nausea... But even still he has his sense of humor. When I arrived back at the hospital with dinner, Jonathan says "I left you a present in the bathroom." Every women after hearing those words would proceed with extreme caution! I went into the bathroom to find a hospital urinal fill with bright pinkish red pee... He just knew I would want to see it! (Sadly I am kind of weird like that... It was a very strange color for pee) Only after 10 years of marriage right?
Anyway, he was discharged on Thursday as we planned, but with some bad news. His blood tests are beginning to show that his liver enzymes are becoming elevated. The previous two types of chemotherapy drugs are processed through the liver and are very hard on his system. What this means is that we need to watch this closely and possibly change the dosage of his treatment. This news shot me right back into reality. I guess lately I've gotten to this place where we just live day by day, and deal with little issue after little issue. But this was a huge reminder of the big issue. If we change the dosage of the chemotherapy, his chances of beating this decrease. We are still in a war for his life and not just fighting these little battles. However we can't give him such high dosages that his vital organs begin to shut down.
It is really incredible how God puts people in the right place at the right time. So this week my cousin Ryan, who is a paramedic, and his wife Haley, who is a nurse on her way to be a nurse practitioner had volunteered for the week to help with the boys. So immediately upon hearing about his liver enzymes they sat down with me and started reviewing Jonathan's meds. I'm not sure if any of you are aware of the amounts of medications cancer patients are on, but I feel so overwhelmed and out of my league. Every drug has a side effect, and is processed in a certain place in the body, and I am so overwhelmed with trying to make sure he is getting exactly what he should have. These two sat down with medical apps and reviewed everything he was on. What dose, where the body processes it, alternative options. We discovered he is actually nearly over dosing on Tylenol according to the new information of maximum dosages. And many of his any nausea meds and pain meds were being processed through his liver which is being overwhelmed already with chemo. So when I took Jonathan to see the oncologist on Friday for his shot, I had notes upon notes of questions about medications. Needless to say we did end up making some changes. Nothing he was taking was wrong, and I have 1,000 wonderful things to say about his doctor, but once again being your own advocate for the BEST option seems to be required. And I love that the doctor doesn't get offended by all my questions and jumped right on board.
Now on Friday when we went to the doctor, Jonathan was really sick. He just feels awful after the doxorubicin and Cisplatin chemo drugs. So he was in bed all day. Late that afternoon I went up to start packing for my trip to Moses Lake on Saturday. When I went in the room I woke him up of coarse, so he decided to get up to use the restroom. As I was sorting through my underwear drawer I heard the bathroom door slam against the wall and the loudest sound of someone hitting the floor as I've ever heard. As I ran into our bathroom I discovered Jonathan unconscious on the bathroom floor. That feeling right there is something I would wish on no one... In sheer terror I began to scream for Ryan. He got right in there, found a pulse, made sure he was breathing etc. Jonathan then began to regain consciousness and seemed to have not hit his head. We opted not to call the ambulance and instead I immediately called the doctors cell number and talked things over. I guess passing out is a side effect and Jonathan was pretty dehydrated. Understandable since he is so nauseous, water or anything really just wasn't something he wanted. So we made some new ground rules. Jonathan must sit for a minute or more before standing, and now must sit to pee, and he promised to never do that to me again! Frankly I think it scared both of us.
During my car ride to Moses Lake that night, I did some reflecting. What would I have done had a paramedic and nurse not been present? I know how to check if he is breathing, and if he has a pulse, and I think CPR classes would come rushing back. But really that isn't that much knowledge. So I can find a pulse, that just means his heart is beating, but why is he unconscious on the floor then? What do all the blood pressure numbers really mean? Unless they were 0 over 0 I wouldn't know normal from abnormal. So I took some time on Sunday morning to learn some basic first response stuff. I hate the feeling of being helpless, so that is going to change! Just one more thing you hope you never have to know/use, but just because I don't want to use it, doesn't mean I don't need to know it. Ryan and Haley I can't tell you how grateful I am you were with me when that happened. Thank you!
Each day that passes Jonathan is feeling a little bit better. His nausea is getting better, but now he is getting a significant amount of cell death in his body so his sinuses are draining etc. Please pray we don't deal with an infection this time! Tomorrow we have another doctor appointment at the ENT to check his hearing again after this dose. Please pray we don't see additional hearing loss. And maybe they can help confirm we don't have the start of another ear/sinus infection from the drainage.
To wrap this up, I'm not going to tell you something inspirational I found this week, I'm going to ask you a favor. This week I've been thanking God that Jonathan was the virtue of health when we started this process. (Well besides Cancer) He doesn't smoke or drink so his lungs and liver were in top shape. We've only been through one round and his liver is now showing stress... what would his prognosis be if it was compromised to start with? His resting heart rate was that of an extreme athlete being in the low 50s, now it is in the 80s or 90s. When he drinks coffee he is in cardio range. What would we be dealing with if he had high blood pressure or a heart under stress from an extra 50 pounds? Changing a dose of a medication that can save your life IS just as scary as the outcome of these possible complications. So for those of you reading this today, this is my plea to you. For your parents, and your children and your friends and most importantly yourself, Take a look... an honest look, and ask yourself how well you are taking care of yourself. You never think in a million years that something like this can happen to you, but I'm here to tell you that it can. And being as healthy as you can be matters! You could be 29 years old with 2 children AND with cancer, and you need the best shot possible.
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