Updates

I have not updated this in some time, and the reason is because everything is going well.

Neil had a clear scan in September and another one this past week. He went to Dr. Mehta today and was told for all intents and purposes, he is considered cured. He told Neil that he would not flush his port because he just wants him to have it taken out! So Neil will be scheduling that soon. Dr. Mehta was also so optimistic, he scheduled his next appointment for four months out, rather than the expected three.

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!