Tuesday I met with Dr. Stone. I had my blood drawn and then we talked about the details of Round 3 of treatment. I can’t believe it’s already almost time for another round. I haven’t even recovered from the last round!
I’m really, really hoping that because I’ve been feeling so bad that it means that the chemo is doing it’s job and knocking out the cancer. That’s what I’m praying for anyway. I’d like to think that it’s doing it’s job and I’m not feeling like poo just because.
Overall, I left the appointment feeling pretty positive.
I went in with several questions, and for the most part, I felt like they were answered. If they weren’t answered completely, it was because we have to wait to see how the net round of treatment goes before we get a definite answer.
- I’ve been having some trouble
thinkingsleeping. Sleep is NEVER something I have a problem with…if sleeping were a sport, I’d be on varsity, or maybe the Olympic team–Tokyo2020?Is there something I can take? Sure there is…Benadryl. It’s not exactly the answer was a hoping for…I was hoping for something a little more substantial, but I also understand his hesitation. He said he could put me on something heavier like Ambien, but it’s also habit forming, so he wants me to try Benadryl first and see if it can be an easy fix. It’s just the last few days I’ve been struggling with sleep…so we’re going to start simple and see how that goes.
- I feel like I’ve been hit by a truck. My bones hurt…like physically ache. And the headaches, oh my. Is there something stronger than Tylenol that could potentially make the week after treatment, not total hell? Yes and no. There are several other things we can try. We can try Tylenol with Hydrocodone, which I’ve been trying…and we could also try Percocet. I had actually spoken with a lady who had gone through very similar treatment last year. She had mentioned her bones just hurting and in my mind I’m thinking “Yah, okay, I’m sure it hurt…but, I’m tough.” Man, she wasn’t kidding. So I’m thinking that after this next round, we’ll bring out the big guns and try to avoid feeling rotten for a full week. I’m okay feeling bad…but if we can avoid feeling horrible, let’s try that.
- What happens if my blood count is too low on Monday when I check in for Round 3? This one is a two-parter. First, my levels came back really, really low today…which is expected for 11 days after treatment. Last time, several days before Round 2, my white count was really low. It was at like 1.7 and it needed to be around 11. Dr. Stone was confident that it would come up on its own by Monday…and he was right.So now, that’s what were hoping for…again. Except this time, my white blood cells, red blood cells, and platelets were all low. So, we need them to come up by Monday. If they don’t come up by then, treatment will have to be postponed until they do come up. Y’all, we don’t have time for that! We’ve gotta get this mess done and knocked out.The second part: Because my red count was so low, that explains why I’ve been feeling so horrible. I’m extremely anemic (due to the chemo)…and the crummy part is that there isn’t really anything we can do to fix it. I can try an iron supplement, but he doesn’t believe that will help. He said that if my numbers get too low, I would potentially need a blood transfusion…but he doesn’t see that being necessary. He’s hopeful things will start turning around…and I pray he’s right.
- When is the next PET scan going to happen? After this next Round. I’ll be in the hospital from January 9-13. My PET scan will be Friday, January 20 and we will meet to discuss the results on Tuesday, January 24. I can only imagine the anxiety I’ll feel having to wait over the weekend…but we’ll make it. He said some doctors would probably wait until after 4 rounds, but he wants to do it after 3. I asked what he expected/hoped to see from the PET scan. Thinking back, that sounds like a pretty dumb question…obviously, he said he hoped to see the tumor and lymp nodes responding and essentially shrinking. Touché, doctor. I hope to see the same results.He also clarified that as of now, I will have 6 total rounds–1 of the original regimen (RCHOP) and 5 of the new regimen (R-EPOCH). This could change depending on the results of the PET scan…but for now, this is the direction we’re headed.
Once he answered my questions, he brought up the intrathecal/lumbar puncture. He reiterated that we’re okay either way we decide. If we decide to do it, great. If we don’t, that’s fine too. There isn’t much research supporting that it does or does not specifically help. He did say that it could potentially cause worse headaches…which sounds dreadful. The headaches I’ve had have been horrible…so the thought of them getting worse isn’t too compelling. He also said that it could cause my blood counts to drop. There’s not certainty that any of these things will happen…but it’s possible. So far it’s not sounding too exciting, but then, when I asked why people DO actually do it, he said this…”To help potentially prevent a reoccurrence on cancer in the central nervous system.” And then he had me. I’ll take the headaches. I’ll take the aching. I’ll take all of those things if there’s even a chance this will help prevent a reoccurrence in the brain. Sign me up.
Unfortunately, the lumbar puncture can’t be done over the weekend…so I have two choices. Choice 1 – We move treatment to be from Wednesday-Monday, which means I have to stay an extra day, and then they’ll do the procedure on Monday before I get released. I’m not a fan of this idea because I don’t want to be in the hospital over the weekend when the kids aren’t in school…I’d rather be in during the week while they are occupied.
Choice 2 – Keep treatment Monday-Friday and then I’ll go back up to the hospital either Monday and Tuesday to have the procedure done as an outpatient. While I don’t love the idea of going back up there, I have to go get my blood drawn anyway…so I figure let’s just kill two birds with one stone. So, assuming treatment next week goes well, we’ll go with Choice 2.
One thing I really like about Dr. Stone is that he is so incredibly thorough. Every time I meet with him, he seems so up-to-date with my situation. I know he sees hundreds of patients and is currently treating many of them. And I’m sure he probably just routinely looks over my file before we meet each time…but he presents himself in a way that is incredibly impressive. He knows exactly what concerns we had during the last round, exactly what we spoke with the on-call nurse several days before, and he always restates everything we cover during each appointment. I know not all doctors do that, but I truly appreciate that he does. To me, it shows that he is aware. He is knowledgeable. He is invested. And I will forever be grateful for him.
I had also been interested in learning more about the specific drugs that make up the chemo regimen I’ve been getting. At the beginning, I didn’t really care to know too much about them because everything I had heard/researched, it was all pretty nasty. Bad side effects, long crazy names followed my fancy medical jargon that didn’t mean much to me. But, I figured it would probably be a good idea for me to be familiar with each of the names. So here they are.
Fancy, huh? Well, that’s that. That’s the plan for now. Please pray for rising blood counts, feelings of peace and understanding…along with less anxiety.
Thank you for calling, texting, emailing, etc. to check in. I appreciate your concern and support more than you will ever know. I feel like a broken record, but I feel so blessed to have the most incredible support system through what could be such a traumatizing time.
Bless you all!