Chemo date change, maybe

I got a call from the oncologist this afternoon and he's trying to move the initial chemo date from Dec 5 to Dec 3 or 4. Should find out for sure tomorrow or Friday. Hopefully tomorrow.

And in something that freaked me out a little, he did say it is considered stage 4 since it is extra-nodal, which means it's not limited to my lymph nodes, but is also in my sinuses. He confirmed again it's no where below my neck, so I was surprised it's stage 4. I still haven't been in any pain except for the days following surgery.

chemo starts Dec 5

Just a short entry following the longer one yesterday - I found out this afternoon that chemo starts next Wednesday, December 5. It'll last around 8 hours per session so I'll need to bring a book, audiobook, laptop, or whatever. Knowing me, there will be a few naps scattered throughout the day as well.
Two certainties in life:
1 - God is good, full of mercy and grace through Jesus, no matter what the circumstances say.
2 - When in doubt, or when life sucks, see number 1.

N.E.D.

I learned a new acronym at the oncologist's office today. N.E.D. - 'No evidence of disease.' The nurse (or was it nurse practitioner?) said there was no evidence of disease, or N.E.D. shown in the PET scan and CAT scans for anywhere below my neck. She said that's the three greatest letters in the English language, or something to the effect. The scans showed the lymphoma we already knew about, but nothing anywhere else.
I started the day with a PET scan at 7 AM. That's one where they inject some sort of stuff in you through an IV line, wait for it to go through your body, then do a scan through some piece of machinery that's way above my understanding. After that I had a CAT scan of my neck and pelvis. For that I had to drink 2 cup of "lemonade," which is something that helps cancerous places show up on the scan. It's some vile liquid flavored with Crystal Light lemonade. And during the scan, they inject you with something that spreads rapidly through your body, creating a very warm sensation immediately. I'm expecting to start glowing in the dark pretty soon.
Next came the bone marrow biopsy, which is done to make sure the lymphoma isn't coming from the bone marrow. They numbed my lower back/pelvis region with stuff similar to what a dentist uses, then got bone tissue/marrow, from outside and inside the bone. I felt pressure and some pain, but the numbing agent did its job so it wasn't as bad as I thought it could be. Of course I couldn't see the needle they used, which Audrey said was quite large.
Last but not least, I had an echo cardiogram. This was the simplest and shortest of the day's activities. The tech/nurse doing the test checked my heart with an ultrasound machine that showed my heart beating, zeroing in on different angles. This test was to make sure my heart is healthy enough for chemo.
The oncologist said the chemo could start this Wednesday or next Monday, but we're awaiting the final word. Looks like we might have to have more of a battle to get the short term disability paperwork filled out for the (probable) 1 to 3 days at a time I'll have to be out of work for chemo and any after-effects. But we'll pick that up again tomorrow.

Monday is test day

Full day Monday. Starting at 7 AM and continuing until after 4 PM, I have a PET scan, which helps determine if any places look suspicious for cancer, then a blood marrow biopsy, which determines and hopefully eliminates the possibility of the lymphoma being produced in marrow, then a CAT scan of my neck and pelvis to make sure the lymphoma hasn't spread to those areas other than the place in my neck we already know about, and finally an echo-cardiogram to make sure my heart is in good shape for the chemo treatments. I'm not sure in the difference in a PET scan and a CAT scan, thankfully I don't have to know all the details.
After that the doctor will be able to stage the cancer and chemo will begin.
I'm still working my full time job except days where I've had doctors appointments. I was off eight working days during the time of my first two surgeries and two days for my second. After my first chemo treatment I'll see how my body responds so I'll know how much time I'll be off after each treatment. The doctor (or maybe it was the nurse) said the response to the first treatment is usually an indication of how they'll all go.
I've also got a tooth that's been hurting some lately, and I need to get it taken care of before the chemo starts.

Headed to chemo soon

Found out I have two kinds of lymphoma - small cell (less aggressive) and large cell. The small cell started in my sinuses, possibly several years ago. It transformed into large cell, which is what was found in my neck after the surgery from two weeks ago. The small cell transforms into large cell in about twenty five percent of small cell lymphomas.
The standard treatment is chemotherapy. Before the chemo, and hopefully next week, I'll have more CT scans done of my neck and pelvis, and a PET scan. That will be followed by an echo-cardiogram and a bone marrow biopsy. If all goes well in those, the chemo treatments will start soon thereafter. Due to the location of the small cell mass, one of the chemo treatments will include a round of treatment involving spinal fluid to help keep the lymphoma from spreading to my brain.
The large cell is curable, so if all goes well with the chemo, that part could be taken care of permanently. The small cell is treatable and can be put in remission, but the doctor said it is not curable. I believe in the power of God and the power of prayer, so will trust that with or without the treatments, it'll all be taken care of. 
There's more detailed stuff as well, but that's the crux of it. I'll get a chemo treatment once every three weeks, probably for six treatments. If anyone would like more details, email me at dsurrett@yahoo.com or send me an inbox message on Facebook.
I was gonna ask how fast my hair would fall out but forgot to. Shouldn't have wasted money on a haircut last week. Gonna have to find another hat. I have a large head so even most of the one-size-fits-all hats don't fit me. The hat I've been using for years is a Florida Marlins hat. I'm not a Marlins fan, but it fits me.
Doctor Forero, who is said to be the best oncologist at UAB, said I need to find something to occupy my mind during this so I wouldn't always be thinking about lymphoma and chemotherapy. Time to get back more heavily into my writing.
"It was a dark and stormy night..."

Finally, an appointment with an oncologist

I found out yesterday afternoon I'll be seeing a medical oncologist Monday, instead of a radiation oncologist as we'd been told Wednesday. Not sure if the surgeon got the final biopsy results and decided I needed to see someone different, or if scheduling couldn't be worked out, or what. The oncologist I'm seeing is said to be the best at UAB, so I've got no complaints about the change of plans, even though the other had very impressive credentials as well. The one I'm seeing was recommended by at least one oncologist in Atlanta that a sister-in-law talked to.
I'm thankful to be seeing him Monday. I wasn't sure if I'd have to wait until after Thanksgiving for an initial consult.
Sometimes the Christian life can be a paradox. I'm trusting God to heal me and remove the cancer or dry it up, and a lot of people are praying for that as well, but at the same time I'm ready to get the show on the road and start whatever kind of treatment is most likely to take care of the matter.

Finally some progress

The surgeon said after last week's surgery on my neck that lymphoma did show up on the frozen section, and preliminary pathology from the full biopsy says the same. The first surgery (out of two) on my sinuses showed it as well.

I had a CT scan on my chest and abdomen this morning and it came back negative, the surgeon said those areas are clear, so at least the lymphoma hasn't spread. I'm taking that as being good news. I had to drink a big cup of stuff they called lemonade, but realized quickly it was lemonade flavored solution designed to make the CT scan show clearer results. They injected me with stuff through an IV that spread within a few seconds to pretty much all parts of my body. I could tell because it felt like the beginning stages of spontaneous combustion as it spread.

The surgeon contacted a radiation oncologist who will be getting in touch with us in the next day or two to see about beginning radiation therapy. If I don't hear from her (the oncologist) tomorrow I'll call her office, also at UAB, Friday morning to make sure the appointment is set. Her credentials look very impressive. We've still got a few questions about what seems to be mixed results as far as large B-cell and small B-cell lymphoma, so hopefully she'll be able to answer them. 

A lot of the struggle right now is mental/emotional. 

Continue to keep me in your prayers.

ramblings while awaiting next doctor's appointment

I have another CAT scan scheduled for Wednesday at 4 but I'll go early, around 11, in hopes they can fit me  in since my surgical follow-up appointment is at 1:45 PM. If he has the CAT scan, hopefully he'll go ahead and get me a consult to an oncologist.
So far the physical pain has been limited to the post-surgery discomfort that eased off after a couple of days this time. I was out and about for about three hours this afternoon and was tired before I got home. It's kind of embarrassing to go in PetSmart and having to get someone older than me to take the 40 pound bag of cat litter to the car for me. As per doctor's orders, I'm not supposed to lift anything heavy. Wouldn't want the stitches on my neck to bust open.
The mental part of dealing with the what-ifs and I-hope-nots is the worst part so far. I'm in a great online fiction writing/critique group but I've had a hard time really getting into it since all this started. If any of you from that group are reading this, I really hope to be back in the swing of things soon. I think it'll be easier for me to do more reading, writing, critiquing after I know more of what I'm facing and what the course of action will be.
I've been getting more rest in the last five of six weeks than I have in recent memory. Since I'm not at Publix right now (it remains to be seen if I'll be there in the future as an employee) I have nights and Saturdays free. Great. For the first time in several years I'm not working every Saturday during football season, and my team sucks big time.
I haven't gone on the internet and done as much research as Audrey has about different types of lymphoma, where the best doctors are, etc. I haven't had the desire to. That might change after we have a clearer picture of the immediate future.
Friends old and new from around the world are praying for me, and that makes me feel good, sure, but I also believes that God literally answers prayer, so I'm counting on the effect being more than just a case of the warm fuzzies. Some folks don't get healed. I don't know why, but I'm not concentrating on that. Sometimes the only answer to life's difficult questions is "I don't know." But God is good, merciful, and compassionate.
Going to have lunch tomorrow with a good friend I haven't seen in a long time. Good friends and good Mexican food. Looking forward to it. My ancestry it French and English but my favorite foods are Mexican and Italian.
I guess that's all for now. Time to read a few pages out of Stephen King's Wind through the Keyhole and go to bed.

update

Another doctor's appointment next Wednesday, he's saying it's lymphoma. They'll do some scans and hopefully schedule a consult with an oncologist then. We still don't know if anything has spread or what stage it is. Haven't had any pain yet except the regular post-op discomfort kind of stuff.

Today's surgery

Today's surgery turned out to be a biopsy on the growth on my neck. The doctor said the frozen section did come back showing lymphoma. If it had been squamous cell of the neck, he would've gone ahead and taken lymph nodes out of my neck, but lymphoma is treated differently.
He said we (we as in me and my wife Audrey; I'm not speaking in third person) should come back in 10 days for a followup after the full biopsy results are back, but we'll call tomorrow and try to get him to get us in with an oncologist sooner than that since results from the first surgery did show lymphoma as well.
It's gotten to where all of the waiting seems ridiculous.