Friday, Dec. 28

I'm thankfully feeling better today than yesterday. Had few bites of food for dinner, have had some Ensure and Boost today. Will try to eat some breakfast tomorrow. Plan on being in bed most of the weekend so I will hopefully feel like working on Monday. Continued prayers are appreciated.

Day after chemo round 2

Okay, the chemo is kicking my butt a lot worse than after round 1. Last time I worked the day after the treatment, today there was no way that could happen. I've been in bed all day except for getting up a few times for a few minutes. Got sick (throw-up sick) last night, despite taking Zophran after getting home yesterday evening, then was sick again this morning.
The thought of solid food makes me nauseous, which it didn't do last time. I had a Boost this afternoon and will try some pudding after while. I seem to have a slight fever as well. Thankfully I'm off until Monday.
But with that being said, God is in control. His mercies are new every morning because we're a mess every day.

Chemo round 2

I started the day with intrathecal chemo and now waiting to be called back for the regular chemo regime to begin. The intrathecal involved a lumbar puncture and the doctor injected some kind of chemo into my spine. Will add more later. Need to find some coffee.
The last paragraph was from around noon, now it's almost 6 PM and we just got home. I found a cup of coffee and it probably wasn't a good idea since I hadn't had anything to eat or drink since before midnight last night, as per orders for the intrathecal chemo. Not sure if the coffee on an empty stomach made feel bad or if my blood sugar was nose diving, but I felt bad for about a half hour, but once I was in the infusion room and had a few bites to eat I started feeling better.
For the next four days I'll do what I didn't do after my first chemo treatment - rest and recuperate as much as possible. The Gatorade has been poured and the bed is calling my name.

Post first chemo treatment update

My first chemo treatment was 12 days ago. For the first few days I woke up feeling okay but by lunch was pretty much exhausted. My stomach felt not-right for a week, and still does to a lesser extent.
I haven't been eating as much as I used to but am by no means on a starvation diet. Haven't had a cheeseburger since chemo day when I threw it up a few hours afterwards. When I have eaten too much I've felt bloated and stuffed for several hours. I've always been a nap taker but find myself taking them more than I used to whenever possible.
Most of the swelling in my neck and under my right eye went down after the first chemo session, as Dr. Forero said it would.
I'm getting hats/caps to wear after I lose my hair, which will probably be after the upcoming treatment. Some guys have the cue-ball look, but I think I'll stick to wearing a cap most of the time after I lose my hair.
Guess that's about it for now.

First chemo session

I had my first round of chemotherapy yesterday. I was going to update this blog last night but didn't quite feel up to it.
I started the day getting bloodwork done, which will precede every chemo treatment.
We saw the education nurse who did a very good job of going over the different chemo meds I'd be getting and what side effects could be for each. I'm getting what's known as R-CHOP chemo, with each letter standing for a different chemo drug. I asked if I MIGHT lose my hair or would DEFINITELY lose my hair, and I was assured I'd lose it all, but it'll grow back. I had figured that would be the case. I was told I wouldn't need any nausea medication the night of chemo since the chemo drugs have anti-nausea meds in them. Ha-ha-ha! Joke's on me. Everybody responds differently, and I am evidently the exception to the 'no nausea meds needed on the night of chemo' rule.
The chemo infusion room is set up with I think 20 something recliners in a row around the wall, each with curtains on the side for a measure of privacy. I've been asked if I'd be getting a port to be used for each treatment. No port, they give all of it through an IV line. Before the actual chemo drugs began I got some IV Benadryl. Good stuff. I spent the day napping, reading, checking facebook, but mainly napping.
The IV treatment started around 9:30 or 10 and one type of chemo or another was going until about 4:15 PM. They had plenty of stuff to drink and snacks, and Audrey got me a cheeseburger for lunch, which I lost a few hours later.
At 4:30 I thought a cheese pizza would be good for supper, but within a couple of hours I had decided it did not sound good at all. I started feeling 'not right' about 6 PM while we were in WalMart getting stuff I'd need (Benadryl, Zyrtec, etc). I went to bed as soon as we got home and finally threw up about 9. So much for not needing anything for nausea.
I felt a little better this morning and logged into my work network to work from home. A light breakfast (one scrambled egg with cheese) didn't do any damage, but I was tired before lunchtime. I got the cheese pizza delivered  I'd decided against last night. Only had 2 pieces.
After my next round of chemo I'll probably take a day or two off. I was pushing it to work today, and we'll see how tomorrow and the weekend go. Next time I'll get intrathecal chemo as well, which will allow the chemo to get to my brain, since regular chemo can't get past the 'blood-brain-corridor', and part of the lymphoma is close to my brain.
I truly appreciate my friends who have offered a 'natural herbal' remedy for cancer treatment, but it's illegal in Alabama (medicinal or not) and I don't want to spend time between treatments in lock-up.
My next treatment is December 26.

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.

another surgery scheduled

The surgeon said the biopsies from my previous surgeries came back negative for lymphoma, even though one of them still didn't have enough tissue to run thorough tests.
The original issue was a growth/swollen gland in my neck. He'll be doing surgery on November 8 to get tissue for a biopsy and frozen section to see what's going on with it. Depending on what he finds, he'll either sew me back up, or things could get more complicated really quickly. He seems to think they'll get complicated, and without going into a lot of detail, there will be two routes he could end up taking.
I'm praying he won't find anything cancerous unless it's benign and limited to an area he can go ahead and take care of. As before, steps after that will depend on what's found.
Thanks for the continued prayers.
On the lighter side, the nose spray I'm supposed to use three times a day is making me a little jittery. I might have to switch to decaf.

More delays

We found out today the biopsy results are in, but apparently only the doctor can discuss what they mean with us. Audrey went to Kirklin Clinic and got a copy of them and is still trying to make sense of them. She's a nurse, not a doctor, and they are apparently very complex and hard to understand. I think I'm being more laid back about it than I would if were Audrey another family member awaiting test results. When my primary care physician looked at the place on my neck and said it was probably a swollen gland and to come back if it didn't go down in three weeks, I should've said "No way, who can I see about this." But as the saying goes, hindsight is 20-20.
The doctor is out until Monday so we have an appointment for Monday morning so he can go over the results and tell us what needs to happen next. I have several friends who have had cancer, and some have it still. Has anyone ever heard of having to wait nearly two weeks after surgery to get biopsy results?
I think I'll read for a while before going to bed. As Groucho Marx said, "Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read."

and still waiting

How long should it take to get biopsy results back? I've been calling the doctor's office twice a day this week, and they always take my name, date of birth, and say they'll get the doctor's nurse or assistant to call me, but I still haven't heard from anyone. Even if they call just to say the results aren't back yet, they need to call and let me know something. Getting a little frustrated here. If I wouldn't have to take vacation time to do it, I'd go to the doctor's office so I could go to the desk every 10 minutes and see if anyone could talk to me.

No updates today

I was hoping to hear from the doctor today with biopsy results, but no such luck. He'll be in surgery tomorrow, and for the first time in three Tuesdays it won't be on me. I'll call his office late tomorrow afternoon and see if anybody has any results, unless someone calls me sooner. I'm not sure if one of his assistants will call if the results come in.
It's difficult at times to concentrate on work from 8-5.

Still waiting

Looks like the biopsy results won't be back until next week, hopefully early next week.
I've been back to work the last two days, thankfully my boss gave me the option of working from home by logging into the company's network. Felt a little better yesterday than today. Not in pain, just run down from surgery.
I've gotta trust God, take it a day at a time, and not project myself into worst case scenarios.
A line in Stephen King's book "11/22/63" says "Life turns on a dime." He's definitely got that right.

A few notes

Just a few notes.
This issue started with a growth on my neck, not sinus problems. Even after the ENT looked at the CAT scan an ultrasound he said I had bad sinuses but needed to deal with what he had called a growth or tumor on my parotid gland on the right side of my neck. He said from everything he saw it didn't look cancerous.
The place on my neck is still there and I'll need to see if it'll go down since my sinuses have been cleared and scraped. Yeah, yuck.
I've got a scar about a half inch long on the right side of my nose and one smaller than that from the surgery yesterday. I have to use a sinus wash a few times a day to keep my sinuses cleared.
At this point, I have not gone through any cancer treatment. Last week's surgery was to explore my sinuses (through my nose) and get tissue from the places that showed up on the CAT scan, which turned out to not be sufficient for a conclusive biopsy. Yesterday's surgery was to get more tissue for a biopsy and to wash out my sinuses. A friend had sinus surgery a while back and said in hindsight he wishes he would've taken two weeks off work instead of one. It really leaves you feeling horrible and drained for a while.
Still waiting for biopsy results that will tell if the surgeon's original diagnosis of 'probable lymphoma' holds true. Again, he said yesterday's frozen section came back not showing cancer.
I go back to work tomorrow for the first time in almost two weeks. When I went to the consult with the surgeon on Oct. 8 I had no idea all of this would follow. I thought the neck surgeon would either take a needle biopsy of the place on my neck or possibly schedule surgery. But he, as it turned out, got the sinus surgeon to check the scans, and it all started from there. The neck surgeon is a professor of medicine at UAB and the sinus surgeon is an associate professor. The anesthesiologist from yesterday is a professor as well.
Human Resources at my employer, Jack Henry and Associates, has been extremely helpful in the process of filing short term disability for the time I've been out. If you have short-term and/or long-term disability where you work, it couldn't hurt to at least know who to contact if you ever need to. 
Hopefully all that will fill in some blanks.

Today's surgery

The surgeon took a frozen section, which I still don't totally understand, today, going primarily through my cheek to my sinuses. He said the frozen section came back fine, which is very different from what he said last Tuesday. He also cleaned out my sinuses so I can breathe better now.
We're trusting that if anything was there before, it's gone now either through an earlier misdiagnosis or a direct answer to prayer (I ain't picky), and are waiting for the biopsy to come back for the definitive word. I'm still a bit groggy but Audrey made a great dinner, so I'm about to take another pain pill and visit the land of nod.

David Surrett - Health Matters

Hi all.
I figured creating this blog would be a good alternative to posting health updates to my Facebook wall. Whenever I have an update, I'll just make my status 'blog entry added' or something like that.
This all started about 2 months ago when I noticed a growth on the side of my neck that looked like a swollen gland. That's what my primary care doctor thought it was. When it didn't go down in 3 weeks he sent me to an ENT doctor, who happened to be on vacation for a week and a half. I finally got in the ENT's office and he ordered a CAT scan. He then recommended me to a neck surgeon, who saw the CAT scan and got a sinus surgeon to look at it. Both surgeons agreed they needed to focus on my sinuses, not my neck. I've never had any major sinus issues I'm aware of except allergies, hay fever, etc, but the ENT and both surgeons asked if I'd had sinus surgery. The sinus surgeon did surgery on my sinuses last Tuesday, October 9, and told my wife he'd found lymphoma. She told me early the next morning.
Folks from church have been great about bringing us food, so we've had once less thing to worry about.
The official biopsy was inconclusive since they somehow didn't get enough usable tissue. Apparently that's common, so now I have surgery again tomorrow morning. It shouldn't be as bad as the first one. The plans now are for me to go back to work this Thursday, and carry on until the biopsy comes back, and then the surgeon will recommend me to an oncologist. We don't know yet what stage anything is in, or any specific treatment plan.
I'll be careful about how much specific detail I put in the posts. Email me at dsurrett@yahoo.com with anything I don't cover in the blog.