Today's was Rion's first blood work since he started his new chemo regiment last month and the results are good: his platelets are really good (170 I think) and the only think that is slightly off is his white blood cells. We are going back next Friday to repeat the blood work and make sure everything is set for Rion to start his chemo again on May 19th. The doctor will call in another prescription for the chemo to be delivered next week and then we're all set to go at it again. Hopefully we'll have a better handle on the side effects this time and Rion won't be as sick as he was before.
Unfortunately something else happened at the appointment that I can't let go of. Duke sent down a very comprehensive summary of our appointments up there last month along with a verbal description of the MRI Rion had. For some reason the oncologist in Athens felt that we needed a copy of this. When we were up there all they told us and pointed out on the MRI were good things: re-sectioning cavity closing up, iffy spots from Feb MRI gone, & swelling gone down. Well...according to the report there is a new area of concern, approximately 4mm in size, on the edge of the re-sectioning cavity that is most likely more of the same iffy spots we saw before. There is still some possibility that it could just be swelling from the radiation which the oncologist today was quick to point out. But then why would the report say that it's "most likely" to be residual from the cancerous areas we saw in February? I am having a very hard time with this. The doctor agreed that we would need to have additional MRI's (told him the next one is scheduled for June 27th) and he said that the chemo dosage would be adjusted (increased) if this area grew larger. Why would he even mention that if he thought it was just swelling from the radiation?
Could it already be growing back?
So...while we had a good appointment for the most part I am stuck on this and can't let it go. We will get a chance to talk with the doctor again next Friday to discuss the blood work and I'm torn about what to do: do I ask him to be more thorough explaining what they think this area is on the MRI and risk getting more information than I want to know? Or do we just play along and accept everything the doctors say at face value? The one complaint (compliment?) I have about every single doctor we've seen is that no one has mentioned the chance of Morton coming back or how long it will take before he does. Yes, you can tell me to stay positive and pray that God will heal Rion (after all, He has already brought him through surgery & radiation with minimal side effects) but let's be realistic: how many people do you know who were diagnosed with a malignant brain tumor and are still living 10? 15? 20 years later? The book that everyone keeps telling me to read, the one that I can't remember the name of but it was written by a brain tumor "survivor," yeah, if you google him, you'll find out that he recently passed away FROM BRAIN CANCER. Um, not much inspiration there folks. I want to believe that after this year of chemo we'll never have to deal with Morton or cancer again but realistically I know that's not likely. And today for the first time I felt like the doctors know that as well, no matter how guarded they are with their words or how quick they are to smooth things over when they feel like they've said too much. Maybe it's time to start asking the hard questions and accepting things that we've ignored up until this point.
Sorry that this update isn't all puppies and rainbows but I'm not feeling very puppies and rainbow-y today.
Emily
Hello Emily,
ReplyDeleteI am not sure that you will remember me, but we went to Zoar once upon a time. During bible study yesterday, Belinda Campbell told me of your husband's cancer and today sent me your blog.
I understand your hope, your pain and the questions surrounding every statement a doctor makes. I will be praying specifically for each of you to have strength, wisdom and answers to those questions.
In 12/2009, my husband was diagnosed with Glioblastoma.
I'm not sure if you know about help with co-pays and gas cards from the ACS, but I have lots of info to help.
May grace and peace be yours in abundance.
In His Grip, Mary Wolf
Mary- can you send me an e-mail with the information??? it's gahendersons at (@) yahoo. thanks!!
ReplyDeleteWill do
DeleteJust read your update above, and I hope you don't mind me commenting but thought I'd mention a couple things: My wife (anaplastic oligoastrocytoma) has been living with her tumor for over four years now. I know most of the feelings you're having now because I had the same ones you've stated above in the first year after diagnosis and surgery, temodar, radiation, etc. The truth is, any doctor that tells you he knows EXACTLY what's going on with your husband's tumor is not being 100% truthful. They have a pretty good idea, but things change, and MRIs can be read a little differently by each doctor. Also, the radioligist -- the doctor who makes a report of his readings from the MRI and sends it to the oncologist -- will raise red flags if he sees even the tiniest of change. That's the job. So, please don't get too angry or scared right away...these are initial opinions and the oncologist will act accordingly. That's why the MRIs are so dang important. My wife recently had new lesions form and they caught them just in time...thanks to the MRIs and the initial radialogist report. Any red flag is helpful and usually precautionary. Also, a book you might want to check out is by Dr. Keith Black. He's the head of the Brain Tumor department at Cedars Sinai hospital in West Hollywood/Beverly Hills. He has some postive stories to tell about research and some of his cases (be warned...a couple negative endings too,) but it's ultimately a good book that has some ideas about this world you've been thrown into.
ReplyDeleteThank you so much for the comment!! Can you send me an e-mail (gahendersons at yahoo) I have a few questions I want to ask you?
DeleteI just stumbled across your blog today. I hope everything is going well with treatment! This just caught my eye because you mention how none of your doctors mention if they think it will grow back or when. I am not undergoing active treatment at this time (had surgery back in December) and I am still trying to find a firm diagnosis but both my radiation oncologist & neuro oncologist already told me they believe my tumor would grow back (my surgeon doesn't think so but surgeons always have a bit of a "god-complex" anyways I think). They couldn't say when of course and as of right now I am not undergoing treatment like I said, but they are already trying to prepare me for the radiation & chemo. Interesting how different systems work. Anyways thanks for sharing your story, it's always helpful to see how others handle their experiences. You can check out my blog if you're interested http://anurseturnedpatient.blogspot.com/
ReplyDelete~Erin
Hi Erin! Thanks for commenting! I haven't read your blog but I'm suprised they haven't started you on any type of additional treatment (radiation or chemo) especially if they think it will grow back. From everything I've read and everything the doctors have told us, time is of the essence and it's important to start treatment following surgery as soon as you are healed enough.
DeleteI totally agree about the god-complex but in our case, our surgeon truly was amazing LOL I hope you get some answers soon so you can figure out what the next step is. Best of luck to you!!