Looking at the long-term

I was able to go with Neil to his oncologist appointment this morning. He received his good news from Dr. Mehta's nurse, but he was still nervous about hearing it straight from Dr. Mehta. The doc said he was very happy with Neil's progress and wanted to talk about the long-term implications of his treatment after the clean PET scan. He said he likes to take a middle-of-the-road approach and give his patients just enough chemo--not too much, not too little.

The chemo drugs are very potent and you have a lifetime maximum that's healthy for your body to handle. Dr. Mehta said that Neil was handling chemo very well and he wanted to consider giving him two additional rounds of chemo instead of radiation since radiation has more severe long-term effects. Since two of the tumors (which are now made of scar tissue but need to be shrunk) are near Neil's heart, they obviously want to be very, very careful about using radiation. Dr. Mehta wants to consult with his colleague and the radiation doctor but thinks the two additional rounds of chemo will ensure the cancer stays away while posing the least serious risks.

Neil's blood was good, he's eating and we just had a great Christmas. We've definitely learned some patience through this whole process, and as much as chemo sucks in the short-term, Neil is ready to face a little more if it's better for him in the long run.

5th Chemo

Neil had his 5th chemo (and first post-clean PET scan chemo) on Friday. Nate, his best friend, was kind enough to take one of his vacation days to take him! I told Neil I was worried about the two of them together, terrorizing the oncology ward, but they were good! A big thank you to Nate!

Neil was tired and had a bit of nausea this weekend, but for the most part was okay. He went to work as normal today...it's nice that we have a short week. He's getting all rested up for Christmas and we're so happy we got the great news before the holiday!

Neil has chemo on New Year's Eve, so I might have to wake him up to watch the ball drop. We're planning on a quiet night at home for once!

The way the dates fall in January, Neil will have three chemo sessions in one month. He should be finished come February 1st! He may have to do radiation, but now that's not a sure thing. Hoping he doesn't have to, but whatever it takes is ok with us!

Great news!

Neil found out this morning that no cancer cells are showing their ugly faces. His PET scan is clear other than the swollen nodes. He will have two more rounds of chemo, then maybe radiation if the nodes are still swollen. We are very happy and very thankful! What a wonderful Christmas gift!

PET Scan

Neil had his PET scan on Saturday. It was sort of a fiasco...first, we got there and the mobile unit wasn't in the lot (they bring a huge trailer and they actually do the scan in there). A receptionist told us to wait in radiology (last time we just went straight to the truck and used a waiting room in an old part of the hospital). About an hour passed and there was a shift change so they kind of forgot about us until the PET scan tech came to ask if he had any patients waiting there. So finally we went back to the mobile unit. He waited about another half hour and they injected him with the dye. He had to sit another hour to let the dye circulate. The scan then took another hour. He was really tired by the time it was all said and done.

He should get the results tomorrow morning at his oncology appointment. The doctor is out of town, but the nurse can give him the news. We appreciate everyone's thoughts and prayers at this time! Whatever the results are tomorrow, I will be sure to give you all an update.

Second Round Over

Neil completed his second round of chemo. As I've said before, it has a cumulative effect, so each time he feels it a bit harder and the recovery time gets a little longer. He did not feel well yesterday and did have some nausea. He didn't go to work this morning because he felt he needed another day to recover. His PET scan is Saturday and we will hopefully get some good news sometime next week.

All Systems Go

Today is Neil's 4th chemo session and the end of round #2. He had his blood test this morning and got the thumbs up for today's treatment. Next up is the PET scan next Saturday.

Across the Ocean

By chance, when I was looking for the American Cancer Society on Twitter, I came across someone close to Neil's age who had just been diagnosed with Hodgkin's Lymphoma...same stage as Neil and at nearly the same time.

Long story short, he now talks to Neil via email and I am talking to his wife. They live in Finland. He is having the same chemo (even on the same days!!!) as Neil--just a treatment behind. It's been nice that we can each talk to someone in our unique positions and it's cool to be able to offer advice since the whole process is really overwhelming until you get into a routine.

When his wife emailed me, she told me how her husband found out--almost the exact same way as Neil. He went to the doctor after months of feeling a lump in his neck while she bugged him to go to the doctor! When they felt it, they ordered a biopsy, just as Neil's doctors did with him.

They were even in the middle of looking for a condo when he was diagnosed--just as we were building our house when we found out. Sadly, they were not able to go through with purchasing their home...which I can totally understand because our house was a big question mark for a while too.

I just thought that was an interesting story to share! What are the chances?

Pig Sniffle Proof

Neil got his H1N1 vaccine this morning at the Health Department. I'll leave you to guess what a joyous experience that place was...but thankful they took him! Appointment with Mehta was fine.

Gobble Gobble

Thanks to everyone who helped us or sent housewarming gifts! Unpacking is going well and Neil is feeling good for Thanksgiving! Now I just get to be more nervous about close quarters and illness during the holiday season! Thankfully he gets the H1N1 shot Monday morning.

Wishing everyone a Happy Thanksgiving!

Moving Day

On Saturday, a bunch of people came to help us move furniture. The old house was upside down as I haven't been able to pack everything up yet (in addition to taking care of Neil, getting things in order at the new house so he'd be comfortable after chemo and working!) so I thank everyone who put up with the messiness to lend a hand. They say many hands make light work! We managed to get everything moved in about two hours.

Neil was definitely worn out. Even though others did the lifting and loading, the general atmosphere was a little chaotic--not that it could be helped. But the day did take a toll and he didn't feel well all weekend and spent most of Sunday sleeping.

All in all, the move was as good as can be expected!

Third chemo session done

Neil went in for his third chemo session (first session of round #2) at 8:30 this morning and just got out. We stayed in our new house last night and I managed to get the bedroom set up and the kitchen stocked so he will be comfortable this weekend. My parents and Carol were so kind as to accept our deliveries, hang our blinds and fans and move boxes yesterday, so we're in good shape. Tomorrow Neil is going to keep track of the cats while people help move the rest of the boxes and furniture.

PET Scan Scheduled

Neil has a treatment this Friday, then another on December 4th. He will then have a PET scan on December 12 to look at the affected lymph nodes again to measure their shrinkage. No matter what the results (though obviously we're hoping he'll be declared in remission!), he will still have four more treatments and then radiation to make sure it's gone.

Score!

I happened to be reading the news right as they posted a number to call for Clermont County H1N1 vaccine clinics, so I called immediately. Now they are including those under 65 with a chronic health condition, so Neil qualifies. Got him in for Monday the 30th.

Closing and Checkup

We closed on our house this morning! We are very excited. We're taking things over a little at a time throughout the week and have some things being delivered Thursday. Then we have a crew of helpers to get the rest on Saturday!

Neil had a checkup after with Dr. Mehta. He just called to let me know that his blood counts are good. Red is normal, white is a little low but not worrisome. He has a bit of a fever, but the doctor said it's nothing to worry about. His next chemo is Friday. He did end up getting his head shaved since his hair started falling out when he was in the shower. I haven't seen it yet, but Matt shaved his head too in support. How cool!

Good News For A Friend

Not long after Neil was diagnosed, we found out that a friend from high school (they wrestled together) had been diagnosed with Non-Hodgkin's Lymphoma, stage 4, the month before. He found out when his wife was about 8 months pregnant.

Today, he contacted me to let me know he is officially in remission as of today! They did a PET scan and it came back clean. He will still have chemo even after this good news, just to make sure. Neil's doctor has a similar plan.

We're very happy for him and his family!

Buzz Cut and Pig Sniffles

Yesterday, Neil went to scratch his eyebrow and the hairs came out. Before the hair on his head starts falling out, he's going to get a buzz cut (probably today). That just makes it a little easier to deal with instead of clumps falling out when he sleeps or showers.

I'm trying in vain to find him a dose of the H1N1 vaccine. His oncologist told us to get it from our PCP, but neither of our doctors have it and have no idea when they will get it. Neil doesn't have the energy to stand in one of the 2-3 hour clinic lines and I'm afraid that would expose him to a lot of germs anyway. Walgreens and the Urgent Care Clinic are germ pits (we got our regular flu shots at the clinic before he started chemo). It's a little frustrating but freaking out does no good. If anyone has any tips of where he can get the shot without being in a huge crowd, please let me know.

UPDATE: Thanks to Stacia for this link. https://h1n1vaccine.odh.ohio.gov/ I pre-registered Neil. He is considered a "Tier 2" while pregnant women, those caring for children under 6 months of age, and people aged 24 and under are "Tier 1." If you sign up there, you answer some preliminary questions that help them determine your tier and they will alert you when a vaccine is available via text or email. So it looks like it's not going to be available to Tier 2 people for some time...just have to keep up the hand washing, Lysol and avoiding crowds.

New House!

People have been asking about the house, so here's some info!

We did our final walk-through this morning to find anything we want them to fix before we close. Since it's a new house, there wasn't much...just tiny things like a wall touch-up here or there. They are replacing our garage door since someone ran into it and put a dent on one of the panels during construction, but that's already in the process of being fixed.

We close on Monday the 16th and will move a little at a time over that week. We have lots of people coming to help that following Saturday, so we are really thankful and excited! The hardest part will be keeping Neil from trying to do too much!

Chemo session #2, Round 1 aftermath

We could definitely tell that this second session took it out of him more than the first. Last time, he was taking the anti-nausea medicine as a precaution, and this time it was more that he actually needed it. He never got really bad but there were moments when he was feeling queasy. There were also some smells that were getting to him as his nose is super-sensitive--over the weekend, the smell of the fabric softener on his clothes was getting to him. I've been trying to not wear perfume, burn candles or use strong-smelling cleaners.

The nurse told us that Neil would have a certain amount of energy, and once it was gone, that was it and he'd need to rest. He helped Mike in the garage for an hour or so and he was pretty much spent for the rest of the day.

Sunday he was really tired as well. It was somewhat difficult to find something that sounded good to him, but I swear he has cravings like a pregnant woman! Things that sounded relatively easy for him to eat, like cereal, were not what he wanted. He wanted chicken wings and cheeseburgers! And then yesterday, Carol brought us dinner...her meatloaf and mashed potatoes. He loves it and ate the entire plate. Gretchen and Steve brought us another dinner and we'll eat that tonight (the best meal is one you don't have to cook!!!).

Neil has not lost his hair yet, though the nurse said it was likely sometime this week. I've noticed that it has changed in texture--it seems really dry and coarse.

I'm a little worried about all the excitement in the coming two weeks. We have a final walkthrough of our new house tomorrow morning, and then we close next Monday. We have a ton of help lined up, but I'm worried Neil will be anxious and want to help more than he can. It looks like we'll be moving the bed, kitchen stuff and our clothes on Monday when we get home from work, some more stuff during the week and then the rest on Saturday when everyone is coming to help us. Since he has chemo that Friday, I'm hoping we can get a lot done early and then let him rest as much as possible.

Chemo session #2

Today was Neil's second chemo treatment, which ends his first "round" (which is roughly a month...treatment every other week).

I had to work today but Carol is off on Fridays and was able to take him. I've been in touch with him all day via text and he seems to be doing ok. It also went a lot faster today...the first time we were there all day and this time it was about 5 hours. That's still a long time to be there, but not much can be done about that!

The nurses from the first time must really like him because they set aside a private room for him again. Usually patients get their IVs in a common room, but it's much more comfortable and less stressful in a room with a bed and tv.

I asked him what he had for lunch and he replied, "Turkey and Big Red." I thought he meant the pop, but he meant Doxorubicin, (the "D" in ABVD). So he's joking, and that's good.

As I posted after the first treatment, any bad side effects are usually on the second day after. Knock on wood, the first went well and I'm hoping this one is fine too.

As an aside, I really liked the analogy the nurse used when explaining why chemo seemed so barbaric. When she was in school, an instructor predicted that in the future, we'd have the science to just turn cancer off. The metaphor she used was bringing a caveman to present time and telling him to turn off a car. The caveman would just beat it with a club until the engine died when all he'd have to do is turn the key. Hopefully, in the future, scientists can find that key so we won't have to use chemo to beat cancer.

Chemo appointment

Neil's next chemo appointment is Friday at 8:30 a.m. at Mercy (Anderson).

Good News

Neil went to his oncologist this morning and his white blood count was a little low, but nothing to be worried about. His blood pressure was fine, his heart rate was just a little high (but he was nervous). The doctor felt his neck and said that he could no longer feel the lumps there! I'm not sure how quickly chemo works, but the doctor seemed to think that was really good news. The lymph nodes in his chest are quite large, so hopefully those have gone down in size as well. We won't know that until his next PET scan, but things are looking really good so far! His next chemo session is this Friday. I have to work, but Carol will be with him. It should go faster this time since he's already been through the orientation-type stuff and medical history.

Doing Well

This week has gone really well. Neil is sleeping, eating and going to work as normal. I know his reaction from chemo treatments will be a little different each time, but at least for the first one it seems he is tired for Saturday, Sunday and Monday and starts to return to normal Tuesday.

Chemo Schedule

As of right now, here are the dates of Neil's next three treatments. After these, he will get another PET scan to see if he needs more chemo. It will continue in two-month increments until the cancer is gone.

November 6
November 20
December 4

Back to work

Neil went back to work today. He was really tired and down last night but I made dinner when I got home around 7:00 and after that I think he felt a little better. This morning he was very tired but decided to go back to work so he has some distraction and a little structure to his day. He will probably be drained by 5:00, so maybe he will sleep well tonight.

Chemo recovery

Neil was really anxious to see how the chemo would affect him for the first few days after and he was dreading feeling nauseous. On Friday, before they started him on the ABVD drugs, they gave him a bag (IV) of anti-nausea. He had also taken it in pill form on Thursday and again Friday morning, followed by another on Saturday. He also has a prescription for an anti-nausea medication that he can take whenever he feels the least bit sick to his stomach. Knock on wood...so far he has not had the sickness. They said he would likely feel the worst on the second day after chemo, which was Sunday. He said he felt funny and really tired. The nurse explained to me that he wouldn't be able to explain how it was making him feel--she said it truly is an overall weird feeling that you can't put into words--but not to worry. He was wavering between being anxious (likely from the steroid he is on) and being very tired. I've been trying to let him do what his body wants him to do, so if he falls asleep I leave him for a few hours and just wake him up to eat so he always has something in his stomach. So far, so good. He's been eating normal meals, but he has been getting the weird, sudden aversions to certain things as the nurse said he would. For instance, I gave him some fruit-flavored Pedialyte on Friday and now he can't stand anything with that flavor. He was also really sensitive to smells. I was cleaning yesterday and had to stop mopping the floors because the cleaners were getting to him. He is home today getting a full day of rest. He said he is feeling better, he is just exhausted. He has chemo the first Friday in November, then again the week before Thanksgiving. His schedule for treatments has worked out to where they are the week before Thanksgiving and Christmas, so he can feel better by the time they roll around. Our biggest worry right now is keeping him healthy--eating right, away from sick people and getting enough rest. So it's going to be interesting getting him through the holidays!

First Chemo Session

Today was Neil's first chemotherapy session. We arrived early this morning and we just got home going on 4:00. It was nice that they put us in a private room since it was his first time so that we would feel comfortable asking questions.

First, they had to do a complete blood count. His white blood count was high, so the nurse had to call Dr. Mehta (his oncologist) to get permission to move forward with the chemo. This all took about an hour and a half.

The nurse was AWESOME. Her name is Judy and she is an 8-year breast cancer survivor. She spent all day with us and explained everything--not just from a medical point-of-view, but also from someone who went through what Neil is going through. She talked us through all of the drugs as she brought them in. The first took a half hour. The next was "big red" or "the red devil." This was injected using a humongous syringe. It's a really bright red color and it's the really wicked one. Since all the drugs were given through his port, I could see it all go in through the tubes. This is a photo of it being given to a Hodgkin's patient. The third drug was a photosensitive one they had to cover with a brown plastic bag and it was given over two hours. The final one took a half hour, then the nurse flushed the port with saline solution. Right now, Neil is sleeping. They don't expect him to feel ill until Sunday--if at all. Some people don't even get the nausea, and I'm really hoping that's the case with Neil. If he is to lose his hair, it will be within the next two weeks.

It was a pretty emotional day and we're both spent, but it also feels good to be on the way to getting rid of this nasty cancer.

On the upside, we watched about six episodes of Everybody Loves Raymond today :-)!

Back at Work

Neil is back at work today for the first time since last Wednesday. He's pretty sore and trying not to take a bunch of pain meds...and he's also not had a lot of physical activity since he's been trying to recover. He's a fast healer, but he's pretty tired and run down from the whirlwind of tests and emotions. Hoping for a quiet night because we're both really tired. He starts his anti-nausea pills tonight in preparation for Friday's chemo.

Staging, test results and chemo appointment

Carol took Neil to see Dr. Mehta today. We were both very nervous because today he was going to get his bone marrow biopsy, MUGA scan and PET scan results, all which could have shown the cancer was in other areas or was more serious than originally thought (the MUGA scan was to see if his heart was healthy and could handle chemo). He's very sore from the portacath installation yesterday and wasn't feeling well. Fortunately, we got some good news. It appears the cancer is in fact isolated to his neck and chest, leaving him with a stage 2 diagnosis. His spleen is slightly enlarged, but no sign cancer in any of the organs and no sign of trouble elsewhere. Bone marrow biopsy is negative, so that's great...we were very worried about that one.

First chemo appointment is Friday at 9 a.m. He's looking forward to getting started and getting this whole thing over with ASAP!

Portacath

Neil had a portacath installed this morning at the Eastgate Surgery Center. As mentioned before, this is where chemo will be given and blood taken to make it easier on his body. We arrived a little after 9 and they didn't take him back until 9:30 for prep. We were allowed to go sit with him while he waited, then Dr. Hontanosas came and talked to us and marked the place he wanted to put it. They actually took him in to surgery around 10:30 and we were called back a little after that to talk to the doctor and finally got to take him home around 1:00. It was a long morning! Carol took us back to the house and we put Neil on the couch. Now she's watching him while I work. He was still loopy from being put under so hopefully he sleeps a lot. Now, off to work late, then fill his pain medication on the way home. Tomorrow is his meeting with the oncologist, which I unfortunately cannot go to, but Carol will be there. This is when they will do his final staging using all of the test results from the past few days--MUGA, PET scans and the bone marrow biopsy. We are expecting a stage 2 confirmation.

PET Scan

Neil had a PET scan on Saturday evening. The whole thing took two hours...injected him with dye, waited a half hour, then did the scan. Not only will the doctor have a more accurate picture of where the cancer is, this same scan will be done after the first two rounds of chemo to measure how effective it has been in shrinking the affected lymph nodes.

Tomorrow is a bi day--he gets the portacath. He has an appointment with Dr. Mehta on Tuesday to go over the bone marrow biopsy and PET scan results and any questions before chemo. First chemo injection is on Friday.

Bone Marrow Biopsy

Right now, Neil is having a bone marrow biopsy performed. This is to make sure the cancer cells are not in his bones. His oncologist is confident this test will come back negative because of the blood results from Wednesday. Since the bone marrow is responsible for the production of blood cells, any problems should have already shown up in the bloodwork.

The procedure is supposed to be pretty painful and unfortunately I couldn't take off work today if I want to be with him Monday for the portacath surgery. He should be out soon, but recovery may take a few hours. Looks like lots of movies this weekend!

UPDATE: Just got a call from him at 10. He said it took them three tries to get a good sample and that it really hurt. He will be in recovery until noon but otherwise he's ok.

MUGA Scan Today

Neil's MUGA Scan is today. This is the test that will help the doctor make sure his heart is up to the chemo they want to use. Results should be fine. I couldn't go because I need to save my vacation days for his treatments, but thankfully Carol has hours she can use so she took him. She gets the joy of also taking him to his bone marrow biopsy tomorrow, which I hear is no fun at all. Will keep you all posted.


UPDATE: Neil just got out and he has to carry a card for three days saying he's radioactive. He might set off the alarm at work. I think that would be pretty cool. All joking aside, he's in good spirits and headed back to work now.

First Oncology Appointment

Today Carol and I went with Neil to his first oncologist appointment at Bethesda North. First things first, I hate any kind of medical setting and for some odd reason, this place put me at ease immediately. Everyone was friendly and the nurses were great. Everything was nice and open and well-decorated and nicely lit. I know that's a small thing, but I think it will make a difference the more we're there.

Neil is seeing Dr. Apurva Mehta, who was until recently also a faculty member at UC and has led clinical trials in cancer research. He comes highly recommended by both Neil's primary care physician and the surgeon who performed the lymph node removal.

Of course, there have been lots of worries, and Dr. Mehta addressed them all the best he could.

Right now, we are probably looking at around 6 rounds (two injections per month is a round)...maybe more, maybe less. So it could really be anywhere from 4-6 months. I think he is opting to do chemo on Fridays so he can recover on the weekends and return to work each Monday he is able. He will recieve the ABVD treatment, which is pretty common.

He immediately asked us about children and we've decided (sorry if this is too personal!) that we are not going to preserve semen for future use. Chemo can render most people infertile for at least a year or two and there's a small chance that it's forever. But neither one of us was to go the artificial route if we decide to have kids. So we're going to take our chances if the day comes. Bonus, nobody can bug us about it for two years! Haha. He also assured us that Neil will most likely be able to continue with normal activities and work schedules. He will just need to take it easy and pay attention to his blood tests to make sure he's strong.

Something I will just have to put out there now: you will not be able to visit Neil if you are sick, are getting sick or have recently been sick. His immune system will be weak this winter and I should probably buy stock in Lysol. I'm a nice gal but I'll have to be very strict about this one. He could end up in the hospital if he gets sick.

We've also been told that if you are someone who will be around him fairly often, a flu shot is advisable. I swore I'd never get one, but looks like we're stopping at Walgreens after work!

He has a battery of tests and treatments coming up. They are:

MUGA Scan tomorrow, which will look at his heart and make sure it's up to the chemo. All indications say his heart is fine but this just make sure he can handle the ABVD drug cocktail because it's rough (nicknamed the Red Devil).

Friday: Bone marrow biopsy. Local anaesthesia. They will take a small sample to make sure the cancer is not in his bones. Blood tests have shown that there is little chance of this and the doctor assured us of this today.

Saturday: PET Scan. This will light up cancer cells and give doctors a clear path of attack.

Monday: Portacath will go in as an outpatient surgery at Clermont Mercy. This will make his chemotherapy easier.

Tuesday: Consultation with the doctor to confirm staging, prescribe anti-anxiety and anti-nausea medications and go over any questions.

Friday: The big day--his first chemo treatment.

A lot of people have been asking about the house, so I'll address it. We have been on the phone with our insurance company and Neil is sorting out his work benefits. We want to go ahead and close on November 16th but haven't made our final decision. Getting Neil better is the #1 priority...if we can still get the house, that's just icing on the cake. We'll keep you posted.

Updates

About two weeks ago, we found out Neil most likely had lymphoma. Since then, we've slowly been finding out more and more. Here's a quick list to keep you all up-to-date. Some of these days may be one or two days off...because the last few weeks have been a blur!

September 24--Neil went to Urgent Care for cold symptoms. The nurse felt a lump on his neck and advised him to have it biopsied. That same day, he sees Dr. Patel, who orders an X-Ray, then schedules a CT scan after seeing several lumps.

September 28--Sees Dr. Hontanosas for consultation on removing lymph node in neck.

September 30--CT Scan.

October 1--Hontanosas calls and confirms his belief the lumps are lymphoma. Schedules surgery for October 6.

October 6--Surgery to remove the neck lymph node. They immediately take a small piece to pathology. Dr. Hontanosas confirms to Carol and me after surgery that it appears to be Hodgkin's.

October 8--Confirmation of Hodkin's Lymphoma, Nodular sclerosis (or "NSHL"). It's in an early stage and this is one of the most curable types.

October 14--First oncologist visit.

We should get more details today. I will post later with the news.