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.