Quick update

Neil had a CT scan a few weeks ago and it came back negative for cancer. There were zero questionable areas on the scan, which is great because a lot of people get the dreaded "well, we think we see a shadow," but none of that.

Last week, Neil met with Dr. Steinmetz, who thinks he has some residual, but not serious, effects from radiation (lung issues and swallowing problems) and he scheduled a thyroid test (routine). He had that last week and today he was told his thyroid function is normal. The concern with thyroid problems in lymphoma patients is that thyroid cancer sometimes manifests and also that radiation can cause it or diminish thyroid function. But all is well.

Upcoming Scan

Neil had a clean scan back in June and they decided to switch him over to CT scans because they take less time overall. He goes this Friday for the scan and we will hopefully get the results early next week.

3 Month Scan-CLEAN!!!

Neil had his 3 month post-treatment PET scan on Friday and I went with him today for the results. His blood work and BP are fine and best of all, the scan still did not show any cancer activity. The doctor is impressed with his progress and will not see him again until January! He will see Steinmetz (radiation) for a followup in September. Other than that, we don't have to think about it!

The latest

Nothing much to report other than Neil is feeling really good, lots of energy and positive mood. Going camping this weekend to get away from things for a little while, but other than that just going about our normal lives!

Bald! And vacation planning!

Neil lost a big patch of hair on the back of his head, so he shaved it all off--it looks really good! He went to the oncologist today and long story short, he has appointments (alternating Dr. Mehta and Dr. Steinmetz) every three months. He gets a PET scan in three months, but Mehta seemed to think that he might not need them very often since he has done so well.

In other news, we are (hopefully) planning a vacation! We both really need a break and have not had an actual vacation since our honeymoon. So we are using some of our refund (after paying off medical bills) to travel to Canada from May 21-31 for our anniversary. Throughout his treatment, we always said we would go back when he was better (we had gone a few years ago), so that's what we're doing. This is our rough plan:


May 21

Travel to mid-to-upper Michigan, stay night

May 22

Travel to Sault St Marie, enter Canada.

May 22-25 Lake Superior Provincial Park.

http://www.lakesuperiorpark.ca/

May 25-26 Travel two hours to Pukaskwa National Park

http://www.pc.gc.ca/eng/pn-np/on/pukaskwa/index.aspx

May 26 Travel 3.5 hours to Sleeping Giant Provincial Park (this is the coolest one!

27-28 Sleeping Giant/Thunder Bay

http://www.ontarioparks.com/english/slee.html

29-31 Home. (17 hours, over three days, make stops along the way).

We're going to camp and recharge! Thanks everyone for your support even now...hopefully this trip will put some life back into us!

One week post-treatment

As of today, Neil is one week post-treatment. He is feeling better every day. He saw Dr. Mehta yesterday and he gave him the good news that he can get his port taken out any time. He will set up a scan/three-month-out checkup and then after that we're looking at a six-month-out checkup and scan. We celebrated this weekend by going to Butterbee's. We used to go there almost every weekend to meet Nate and Stacia. Nate even managed to find their favorite server who doesn't work at the Mt. Orab location anymore but just so happened to be there that night! Josh and Dawn also were able to join us and Nate and Stacia bought a celebratory Dojo Gelato cake from our good friend down at Findlay Market.

FINISHED!!!!

Neil is officially finished with cancer treatment. His last radiation treatment was today and he is expected to remain cancer-free. This is a photo of him walking out of his last treatment. The nurses gave him his mask as a souvenir!

We are so grateful that his treatments worked. It has been a tough journey and Neil has been so strong! We never would have made it without the help of our friends and family. I would especially like to thank our parents, who took turns taking Neil to treatments and helping us out more than we can ever thank them for! Thank you to Karen, who has been a good friend and supporter of the family throughout this process. Thanks Gretchen and Steve for the visits and meals. Thank you Nate and Stacia for your friendship, support, hospitality and words of encouragement. Thanks also to Pam, who used her own experience to give Neil hope, as well as to Rhonda, who was on her own cancer journey but always gave helpful advice and checked in on us. Thank you Outi and Henry, our friends in Finland. Henry was diagnosed and treated on the same schedule as Neil, and their friendship has been so important. We hope to meet them someday! Thanks also to Lauren and Adrian, who took charge and helped us move with their huge trailer--that was so helpful during a very stressful time.

Neil has a followup visit on April 1st and then we expect a visit three months out. He will continue to be checked out at least every six months for five years. After one year, he can have his port taken out. After two years, they will declare him cancer-free.

We finally found a reasonably priced (read: not $300 an hour) dietician who is very excited to help Neil with a diet and exercise plan that can help him rebuild his strength, repair damage and keep him healthy for life.

Here's a closer look at that crazy mask!

A Cold

Not surprisingly, and despite the vitamins and staying relatively close to home, Neil has a cold. He hasn't eaten much and radiation can make it easier to get sick. It's nothing to be worried about, but he did stay home today because he doesn't want to get worse as a result of trying to do too much. One more treatment!

Hannibal Lecter

The nurses let me go back this morning to see the radiation setup and let me get a quick picture. When we were walking back I was telling them I was curious what the mask and all that looks like. The one laughed and said "Hannibal Lecter." It really does remind one of that. You can't see it very well in this photo, but you can see some hanging in the background.

Beard Hairs go bye bye

Neil had his appointment today and the radiation doc said he was still confident there was very little change of the cancer ever returning. Neil still hasn't been able to eat much, so what I fix him, I pack as many nutrients and calories in as possible. Some of the concoctions are kind of funny, but it's food, so oh well!

He came by my office after (I don't go w/him to his Thursday appts since they're in middle of day) and he pulled a bunch of beard hairs out from his chin! Since the radiation hits under his chin and on his neck, it affects the skin there.

Radiation, day 12

Neil woke up this morning with some blood coming from his throat (sorry, I know that's not pretty). I made him ask the nurse at his radiation appt. this morning (his exact words were "My wife is making me ask you why my throat is bleeding") and she said that she was glad he said something but that it's normal. She also said he was mildly dehydrated (it's tough for him even to drink) and wants us to get him some Boost so he can get some calories and vitamins in him. He only has five treatments left but it's getting tough for him to hang in there. He hasn't eaten a meal since Saturday and can only get down yogurt and ice cream. ONLY FIVE LEFT! He can definitely use words of encouragement because even though it's not chemo, it still sucks!

Relay for Life

We will be participating in two (maybe more!) walks this year: Relay for Life and Light the Night. The Cincinnati Relay for Life is on April 23-24 from 6:oo p.m. on Friday until noon Saturday. The rule is that a team must have one member on the track at all times. If you would like to join us or make a donation, please click here to go to our team page!

http://main.acsevents.org/site/TR/RelayForLife/RFLFY10OH?pg=team&fr_id=23477&team_id=602906

Radiation, begin week 3

Neil started week 3 today. 11 down, 6 to go. His throat is really, really sore and he has lost about 10 lbs since the start of radiation since he can barely eat. He was prescribed Miles Mixture, which has a liquid painkiller suspended in Maalox, but it only works for a few minutes before it wears off. He also has a bunch of Numoisyn samples (lozenges) but those only increase saliva production, which isn't helping much with the pain. The doctor and nurses are aware of the issues and are keeping an eye on it, but thankfully he only has treatments through next Tuesday so if he can just hang in there, he will be ok.

Had a good weekend (Neil was a trooper). We needed to get out of the house! We went to Serpent Mound and then to dinner, where Neil quelled the sore throat with a few beers and was able to eat most of his meal. It still hurt, but at least he ate well once. On Sunday we went fossil hunting and then moved a few things over from the old house until Neil was too worn out.

Radiation, end of week 2

Neil has had ten radiation treatments. His throat is REALLY sore. He says it's not like the sore throat you'd have with a cold/flu, but rather feels like all of the muscles are strained and painful. He hasn't been able to eat a good meal in a few days...mostly just malts, ice cream and yogurt. He had a prescription filled last night that is a mixture of Maalox and some kind of pain medication. It's not helping much though. The nurse also gave him some special lozenges and liquid for dry mouth. Hopefully this weekend will give him a break and let his throat feel better Monday. Right now, he only has 7 left!

Radiation Continues

Neil has had a total of 7 treatments, which means he only has ten to go! In two more weeks, he will be finished...I can't believe it!

He's having some severe tooth sensitivity, but we were told he didn't have to worry about his teeth so we aren't sure if it just happens to coincide with these treatments. Other than that, he is feeling really good...in fact, we were out all last weekend hiking and birdwatching. It felt good to get out and get some fresh air.

Appointment Today!

Neil's appointment with Dr. Steinmetz (radiation) was GREAT. Neil has had four radiation treatments so far and met with the doctor today to have a checkup. The doctor said that at this time he wants to do 17, not 20, treatments. He also said that the lymph nodes had scar tissue but today were so small that it would be like someone who had never had cancer having slightly enlarged lymph nodes and they were not even big enough to measure! He said today, without any other treatment he would give Neil a 97% chance of being cured, and at the end of radiation would be brave enough to say 99.9%!

First Radiation

Neil had his first radiation this morning. He said it was fine, the only issue he had is his hands being numb from having to curl them in one position the whole time. So all in all, pretty uneventful!

PET Scan #2 Clean!

Neil had another PET scan on Saturday and we just heard it too was clean! Excellent news. Technically this was scan #3 since he had one for diagnostic purposes, but this is #2 in terms of seeing if the chemo worked. I have to admit even I was freaking out! So now I can eat and sleep.

Thanks everyone for the thoughts, prayers, lighting of incense, stabbing of cancer voodoo dolls, etc. etc. etc.

Work schedules altered

My boss kindly agreed to let me go with Neil to his treatments and work later for the 17-20 days. Not only is it nice for us to be together, it's practical too as we work within a block of each other and it's cheaper and easier to ride together!

So, starting on the 22nd, we will be at work until 5:30 or 6:00 instead of 5:00, just FYI!

Radiation

A friend recently told Neil that radiation would be ok, because hey--it worked for Spiderman :-)

Neil saw the radiologist today and he told him 17-20 days max, each session 15 minutes, 30-36 Gy. He starts Monday the 22nd and will do it only on weekdays. Dr. said he looked good, all organs were ok and that this should be pretty easy. I 'm asking today if I can alter my work schedule to come in after his sessions so I can drive him. They can get him in at 7:30 a.m. and it would take only 15 minutes so I'd be at work just a half hour to an hour later than usual and just work later.

They said he will have some lung scar tissue as a result but that it's nothing that will interfere with normal life.

Thanks everyone for your thoughts and prayers! We're in the home stretch!

End of a routine

Today marks the end of a routine. Since October, Neil has had a doctor's appointment on Mondays every other week. This morning was the first of what normally would have been a chemo week that is no longer! He sees a radiologist Thursday (I'm hoping to go with him) and then he has a PET scan Saturday.

I'm so excited to see how much better he feels after this weekend when it will be the longest chemo-free stretch he's had since this all started. I know there are effects from radiation, but he's been told it's a cakewalk compared to chemo.

Neil is already planning out trips and weekends post-treatment. So far, we're planning on Hocking Hills, Canada, Wisconsin and maybe a trip to Hershey and Philly. Can't wait for life to get back to normal!

8th Chemo

Friday was Neil's 8th, and likely final, chemo treatment. It was an emotional day for all involved. Sadly I was not able to go (I exhausted my vacation and sick leave with the surgeries and appointments and it doesn't reset until March) but my mom took him and Carol met up with them later. Unfortunately, Neil got sick this time but we're counting our lucky stars that it did not start until now. Some people throw up each and every time from the beginning.

Neil mostly slept this weekend--one day over 15 hours--and he stayed home from work today. He sees a radiologist on the 11th and has a PET scan on the 13th. He's going to feel so good when chemo is out of his system. It's been in his body for almost 4 months now.

No more chemo? Maybe!

Neil saw Dr. Mehta this morning and he seems to think radiation will turn out to be the best option in Neil's case. Neil will have a PET scan on the 13th and then see a radiologist towards the end of February.

Radiation is riskier, but the only thing they were trying to avoid was getting too close to his heart. It seems now the opinion is the field of radiation will be ok. Of course, this is all still subject to change but it seems, at least for now, that the last chemo session will be this Friday!

Thanks to everyone who has joined our Relay for Life team. If you want to participate or donate, click here and click the "donate" or "join my team" button.

We are trying to raise $1000 for the American Cancer Society. The way the relay works is this: Your team walks from 6 p.m. on Friday night to noon Saturday. One person must be on the track at all times, so you can switch out, walk in pairs, whatever. The more people on the team, the less any one person must walk :-)

So far, my dad and Nate and Stacia are on Team Neil!

2010 Relay For Life at the University of Cincinnati, Ohio

Friday, April 23 - Saturday, April 24 at McMicken Commons

88 days left until Relay!

Warm thoughts welcome!

Now, understand this is me writing and not Neil, but it seems like the side effects from this past session were not as bad as the New Year's Eve session (the fast-drip of doom). He was tired but it wasn't as scary as the last time when I was afraid he would get sick if he so much as moved.

The one thing that's happening is that he's getting mentally weary. And who could blame him? He's loving silly activities like Legos, puzzles and models because he can put all of his focus into making something and forget how sick and tired he is. He even tried his hand at origami (a boat which sank as soon as he threw it in the bathtub). When we visited Nate and Stacia a few weekends ago I think that was good for his soul too. I've been trying to arrange visitors to come hang out for an hour or two and that helps both of is. There's a fine line, however, between it being fun and uplifting and being overwhelming. He gets tired easily and crowded places and crazy events are usually a no-no not only for the germ factor, but for the overstimulation. It's like he needs smooth jazz instead of hard rock :-). He enjoys the emails, Facebook comments and texts...so keep those warm thoughts coming.

We both took it easy this weekend because I'm starting to feel the effects of everything too. It just takes a lot out of you and so I'm taking the advice given to new mothers: sleep when he sleeps.

7th treatment

This morning was Neil's 7th treatment. One more and he's completed 4 cycles of chemo.

He's already feeling a little rough but he usually needs to sleep it off on Friday night anyway. His nurse returned him to the regular slow drip (sounds like making coffee) and said the faster drip last time could have been a reason he felt so sick after the last one.

40th post

Wow, 40th post! I remember posting the first time on this blog and it seems like it was forever ago...when in reality it was just a few months back. So much has happened since then!

Neil has chemo tomorrow and my dad took the day off work to take him. Then he will have another on the 29th and that will end his 4th round. He will then have another PET scan to see if the lymph nodes have returned to normal size and he will also have a consultation with a radiologist. Depending on what that doctor thinks, it's radiation (not sure how much) or two more rounds (4 sessions) of chemo. As I mentioned before, it's better to have the chemo since the long-term side effects aren't as serious as those for radiation. The bad part is that chemo is definitely taking its toll. Neil was sick the entire time we were off for New Year's Eve. He also missed two days of work this week.

He has been feeling sick to his stomach from the chemo, and though he hasn't had vomiting, all he can do it try to sleep it off...I can't imagine feeling nauseous for 3-4 days straight like that, but somehow he pulls through it. We're both dreading this weekend and hoping it's gotten as bad as it's going to get.

We were talking the other night about what the whole experience has been like, and here's the best we can explain it to everyone who hasn't been through it.

Imagine your spouse or child is scheduled to get a severe flu every other week. Then imagine you
have to take them to be infected with it. That's kind of what it's like. Obviously we try to keep in mind that it's medicine, but it's a dreadful feeling to KNOW you're about to have a bad weekend. Imagine knowing exactly when you will get sick for the next six months. It takes a mental toll.

But enough with the negativity. Neil is being strong and we are trying to carry on as normal. We had a nice visit with Nate and Stacia last weekend and Neil surprised me with CATS tickets, so we have that show to look forward to. Everything is going well in the new house, even though I'm antsy to get things painted I don't want that smell to hang around and bother Neil. I'm trying to finish up my book, which was rudely interrupted by cancer :-) when I got the edits back. Neil says as soon as he's better we're doing something every weekend and we're considering going to Potholes Provincial Park, one of our favorite places, for our anniversary in May if all goes well!

Monday Monday Monday

Neil had a routine appointment today (they take his vitals, do bloodwork and make sure he's ready on chemo Fridays) and he was fine. We had been a little concerned because he has had night sweats, which is a "B" symptom of Hodgkin's and can change the staging, but since he doesn't have anymore activity, Dr. Mehta said not to give it a second thought. His counts were okay, which he was worried about too. He just feels tired and down but it's tough to tell if he is catching something or if the chemo is affecting him. Dr. says everything is fine and to take it easy.

Had a relaxing weekend with Nate and Stacia. On Friday, we were both so exhausted that we went to dinner right after work and then went home, read and fell asleep around 9:00! On a Friday night!!! The next day we headed to Hillsboro and it was soooo nice. We haven't been anywhere overnight for three months, which might not sound like that big of a deal, but when you think of the fact that we usually go somewhere every single weekend, the change has been shocking. We went to lunch, hung out and watched the game (so sad) and then watched movies and ordered pizza. It was like old times without the beer!

On Sunday, we came back to meet my dad so he could install the garage door opener. We had put it off because Neil hadn't been feeling well but he felt ok and decided it needed to get done. Before, we had to go out to the garage, open the door, back out, and then one of us had to go back in the garage, close it manually, go back in the house and out the back door, then lock that and go to the car. What a pain! So this morning was MUCH nicer.

He overdid it a little yesterday with getting the opener installed, so he wasn't feeling 100% and went home today after his appointment.

Much-needed time off

Since we've both used our vacation and sick time for Neil's surgeries, treatments and appointments, we looked forward to the holidays. We were off for Christmas Eve and Christmas and returned to work Monday-Wednesday and were off New Year's Eve and New Year's Day. So even though we weren't off work for two weeks like a lot of people, it was a nice break with two short work weeks and two four-day weekends!

Christmas was really nice, we did our Christmas with each other first and then we went to my parents' house, followed by gifts and dinner at Mike and Carol's house. It was a lot of fun...but by the time it was all over around 2:30 we went home and slept until 7!!!

Neil had chemo on New Year's Eve and I was able to go with him. The oncology unit closed that day at noon, so they got him in and out pretty quickly...the turned up the drip to double time and had his bloodwork rushed. So rather than the 5-6 hours he is normally there, it was more like 4 1/2. We ate with Mike and Carol and then we both went home and took a long nap. It's exhausting just being there, so I can't even imagine what it's like to actually get the treatments. While he was sleeping, I went to the store and got stuff for our own little party--two hats, party horns, snacks and the makings for Shirley Temples! We even broke out our Tiffany flutes to drink them from :-). I made fondue and we had a good time just chilling out.

We watched X-Files for a few hours (we are proud owners of the box set and that's all we watch!) and then around 11 tuned into the New Year's Eve coverage at Times Square. Any other year, we'd be painting the town red with Nate and Stacia, but we were actually having trouble staying awake for the ball drop! Next year it's back on though!

A lot of people keep asking how I am too, and I'm doing really well! I think the time off gave me a chance to catch up on sleep, hang out with Neil and just relax--something I rarely get to do. We played with our presents, watched movies and X-Files, cooked good food and just spent time together. It was a very refreshing change of pace!

Neil's last chemo was tough. He was sick for three days. His chemo was last Thursday and he's still recovering. I'm very proud of him for sticking it out at work yesterday because he wasn't feeling well.

Next appointment is next Monday and next chemo is that Friday.

After the treatments this month, he will have a PET scan and they will go from there as far as the decision on more chemo vs. radiation.