Five Years Cancer Free!

I just had my five year CT scan. My scans look perfectly normal. My blood work also looks good although my blood sugar is a little high. It's hard to believe that this journey started five and half years ago with some shocking news. I didn't know what to expect but it seemed like nothing but bad news at the time. I was scared and a little bit angry that this could happen to me. Looking back on the experience reveals some surprises. First of all, I learned that I'm stronger than I ever knew I was. I never faced any serious health problems in the past and I didn't know how I would handle this one. From the start, I decided to have a positive attitude and not be afraid. I can't stress the importance of a good attitude enough. It made the whole experience less stressful and it made it easier to follow the doctors' advice. By avoiding stress and sticking to a regimen of constant hand washing and avoiding crowds, I was able to attend every infusion on schedule. I didn't miss a single day of work during my six months of chemo. Taking notes at every doctor appointment helped as well. It's hard to remember what was said at an appointment within hours of leaving the doctor's office. Good note taking made it easier to follow instructions and remember the answers to questions I asked the doctor. One of the biggest surprises to me was that I started feeling happy while I still had cancer. It put things in perspective for me in a way that few things could. I live in the present now. I spend less time feeling angry about stupid things from the past and I don't worry about the future as much. In a strange way, it may be lucky that this happened to me. I need to think of a way to celebrate my good news. Maybe a trip somewhere would be a good way to mark the occasion. If you've just been diagnosed with Hodgkin's Lymphoma, don't get depressed. You can win this fight and be happier than you were before you got the news. Now go beat this and start planning where you'll take your five year trip!

Another Scan

I went in for my scheduled CT scan on July 19th. I'll get the results back on Monday. I completely forgot about it until I remembered I had to update my blog. I suppose that shows I really am moving on. Now when I think about my experience, I am more likely to feel like someone who has overcome a challenge than someone who was or is vulnerable. At the same time, I try to prepare myself for the possibility of getting bad news when I get scanned. Surprisingly, I'm not nervous the cancer will return. I'm afraid they'll find something else!

Before I started chemo, my heart was checked. One of the chemo drugs can cause heart damage and they like to make sure everything is OK before they get started. At that time, I learned I had a PFO (Patent Foramen Ovale). The short explanation is that all fetuses have a hole in their heart to speed cirulation. In 75% of people it closes up and in 25% of people it doesn't. It's usually not a problem and most people go their whole lives without knowing about it. However, there is an increased risk of stroke for people who have it.

Before being scanned, I am required to fill out a questionnaire that asked many questions including "Do you have a PFO?" (I suggested they add the words patent foramen ovale to the form and they did.) Since there is a chance that a patient could have a stroke when they inject contrast during a CT scan, they must first get permission from your doctor. And that can take time. It was suggested that I ask my doctor for a SIGNED business card saying that it is OK for me to receive contrast even with my PFO. I'll need to show it every time.

If you have a PFO, they have to make sure there are no bubbles in the liquid. Two people must check the contrast before it is injected into you. Personlly, since 25% of people have a hole in their heart and most don't even know they have it, I think it should be standard practice to have two people check it every time for every patient.

Two Years Later

May 8th was the second anniversary of finishing chemotherapy. My scans and blood work continue to come back fine and my immune system is strong again. I'm trying to live in the present and keep things in perspective. Like they say, don't sweat the small stuff. With a cancer diagnosis, you learn that almost everything is the small stuff. It's time to enjoy the late spring and summer!

My One and a Half Year Scan

I got the results back from my latest CT scan and the Dr. said they were "unremarkable". My dictionary says that unremarkable means ordinary and yet I think the results are extraordinary!

Follow-up Visit

I'm now seeing my doctor every 3 months for follow-up visits where my blood is checked . Each 6 months, I get another CT scan. All is well!

No Mo Lympho

I just had my one year scan and I am lymphoma free! My doctor advises celebrating and I always follow doctor's orders.

Another Clean Scan

I had a another scan and got the results back on March 17th. Everything looks great and my ENT says that my adenoid tissue looks better than ever. My next scan is an important one because it will be close to one year. If the cancer remains in remission for a year, not only are the chances of a recurrence reduced but the virulence of the disease would be likely less.

6 Month Scan and Checkup

I had another CT scan on December 1st and I got the results last Monday. I also went to see my ENT doctor on the same day. The inspection and the scan both showed I was clean as a whistle. The doctor said it was a good reason to celebrate. With each successive clean scan the chances of recurrence are reduced.

I'll continue to have checkups every three months with my oncologist and scans every 6 months for the next 5 years. I'll also continue to see my ENT on a regular basis.

Merry Christmas everybody and a Happy New Year!

3 Month Follow-up Checkup

I visited my ENT a few weeks ago and everything looked great. I went to see my oncologist this morning and my bloodwork looks good.

I'm scheduled to have a CT scan 3 months from now.

I've been feeling great and my hair has grown back. The color started out blonde but has returned to my original red (at least in my beard). The hair on my head may be a little darker and it is growing on the part of my head that hasn't seen hair in twenty years. Go figure.

I've started going back to the gym and I joined Weight Watchers. Last weekend I went kayaking for the first time.

There is life after cancer!

237 days, 37 doctor appointments, 15 blood draws, 12 infusions, 6 lung function tests, 3 PET CT scans, 1 chest X-ray, 1 EKG and 1 biopsy later...

I am officially in remission!

My PET CT scan came back with very different results than the previous one. It showed no uptake in any of the places I had shown uptake before. Any swollen lymph nodes had reduced back to their original size.

This news is a big relief. It will be nice to start thinking about plans for the summer.

Drumroll Please...

I had my adenoid tissue biopisied a week ago on Thursday and I got the results back today. The tissue was benign. Yay!!! It's a big relief and suggests that I am in remission. I'll still get the rest of my body scanned in July.

The biopsy itself went very smoothly. The recovery was fast and I didn't have any bleeding. The nurses were amazed I was up and talking so soon after surgery. The people at Mass Eye and Ear were great and as hard as this is to believe, they even made a good plate of spaghetti and meatballs.

Huh???

I got the results from my PET CT scan and they were "shocking" in the words of one of my oncologists. The scan showed uptake in 4 different parts of my body: armpit, esophagous, and two sides of my groin. Both of my oncologists and my ENT doctor believe the scan shows a false positive for the following reasons:

1. Nothing showed up in the original site of the cancer, my adenoids. If it were going to show up elsewhere it should also show up here. Had I undergone treatment with radiation it would be possible for it to be gone here but show up elsewhere. I never had raditation treatments.

2. Lymphoma spreads to nearby nodes and progresses toward the spleen. This scan shows uptake in disparate parts of my body.

3. I feel fine and show no symptoms of lymphoma.

I'll need to redo the test on July 1st and I will undergo a biopsy of the tissue surrounding where my adenoids were next Thursday. If the adenoid tissue comes up clean, the rest of me should be OK too. I'm doing my best to stay positive and act like this test never happened.

PET CT Tomorrow

I'll be going in for a PET CT scan tomorrow morning. During the week the results will be analyzed and I'll find out if the treatments appear to be successful or if the cancer has withstood the chemotherapy and grown or spread. I'm hopeful that everything will be fine. I'll keep you updated!

The 12th Treatment

My 12th (and I hope final) treatment was on May 9th. It might have been the easiest one yet. Neither the blood draw, nor the infusion was painful and the time passed relatively quickly. Sometimes the Dacarbazine hurts it if is injected too quickly. The nurse seemed to adjust the pace just right and used an ice pack to cool down my arm and reduce discomfort.

Side effects have been relatively mild over the last two weeks. I had the mettalic taste in my mouth and some fatigue. I also had a night of constipation which was one night more than I wanted.

I saw my ENT today and he said that the remaining tissue where my adenoids used to be looks normal. I will have a biopsy in early June along with a PET CT scan next week. These tests will be used to determine if the treatment was successful. Then I'll go for doctor's appointments every 3 months and scans every 6 months for a number of years.

It's been a long six months but the time passed and now I'm done with the standard regimen. Once this round of tests has been completed, I'll be able to focus on moving forward and enjoying life day by day.

The 11th Treatment

I had to go for a lung function test on Thursday. Every time I go, my lung function decreases but it is not showing the precipitous drop associated with thickening of the lungs that can be a side effect of the bleomycin. The doctors say that over time my lungs should start repairing themselves.

This infusion was a tough one. I was scheduled to get my blood drawn at 8:00, have my doctor's appointments at 9:00 and my infusion at 10:00. After getting my blood drawn, my Dad and I went to get coffee at the coffee shop. When we returned to the office at 9:00 the nurse asked where we had been. The doctor had been trying to reach us since 8:30. She asked why we didn't bring a beeper with us. I asked why I was learning that beepers were available during my 11th treatment and not earlier. Of course, the doctor who wanted to see me at 8:30 was not available at 9:00 so we waited in a room for 30 minutes. The irony is that the doctors have never been on time for any of the infusions.

When it was time to get the infusion I had to wait because the pharmacy had not put the order together. It took 3 trys to find a vein and they weren't sure that the 3rd try was a success either. It turned out to be OK so they continued with the infusion. My arm has been black and blue for the last 7 days and it doesn't look like it's going away anytime soon.

I've felt more fatigue than usual after this infusion. I spend all of my time either working, eating or sleeping. I'm spending so much time in bed that I'm starting to get aches and pains in my muscles. One night I felt pain every time I inhaled. I'm always concerned that it is a symptom of lung damage but my doctors say that it is muscle related. I'm also getting some of the strange arm aches in the arm I got the infusion in. The spots where they repeatedly stuck me with the needle are especially sensitive.

I've been sneezing like crazy. I suspect it is allergy related. Everything is blooming outside all at once. I've also been coughing more than usual. I'm going to keep an eye on the cough. My absolute neutrophyl count is the lowest it has ever been. It's down to 80. A doctor friend told me that this means I basically have no immune system right now. It's really important that I avoid getting an infection right now.

I've been more moody lately than I've been during my treatment so far. I think the ending of treatments brings on a lot of emotions. Some people cry for days after their last treatment. It feels like I'll be in limbo after my final treatment. Am I cured? Am I in remission? Am I living with cancer? What does it all mean? My doctors tell me that my prognosis is excellent and that I'll probably live a long life and this will never come back. Then again who knows what the future will bring. I suppose this is the uncertainty that life holds for everyone. Most of the time we assume that everything will be fine. The truth of life is that nobody knows if they will make it to their next meal. I guess this just proves that we should make the most of every moment and live in the present.

My final treatment is scheduled for 8 days from today.

The 10th Treatment

Number 10 may be the best treatment yet. The schedule was to have one appointment after another. Getting my blood drawn wasn't too painful and the injection for the infusion wasn't too bad either. I find that one or the other is usually painful but this time neither one was bad.

The only side effect I had after the infusion was the runny nose I get from tears building up and running down my nose. I'm sure my students think I'm sick but I've managed to avoid illness this entire time.

The 8th and 9th Treatments

I've been busy lately and I got behind on my posts. Let's catch up.

My 8th treatment on March 14th was probably the best one yet. It went by relatively quickly and easily. I suspect the Ativan helped. Remarkably, I didn't experience any side effects afterward except for the runny nose I've had all along. No fatigue. No arm ache. I learned that my nose runs because one of the side effects of the chemotherapy is to produce more tears. The tears then run down my nose.

My 9th treatment on March 28th was long but not too bad. I had to get there at 9:00 for the blood work. My favorite phlebotomist was there but the jab I got wasn't too comfortable this time. The nurse oncologist did a better job of finding a vein without a lot of movement. Then appointments with my oncologists at 10:00. A pulmonary function test at 11:30 showed that my lungs haven't changed from the treatments (that's a good thing). My infusion was scheduled for 2:00 but having my lung tests after my appointments with my doctor seemed to slow up the ordering of the medicine. I had a guest show up during my treatment. It made the time fly by. Thanks Kevin! I got out at 5:00.

I slept after my infusion on Friday as I usually do. I was up early on Saturday and felt great as has also become the pattern. Sunday, I slept all day and night with a few breaks and then most of Monday. If I can get realigned with the clock tonight I think I'll be fine at work tomorrow.

The 7th Treatment

I received my 7th treatment on February 29th. The day went by smoothly and my absolute neutrophyls went up. In the two weeks following the treatment, I had some fatigue for a few days followed by that creepy arm ache feeling about a week later. It lasted for most of a week. Tylenol helps but I'm not great about staying ahead of the curve. I usually wait until it hurts again before taking more Tylenol.

I'm not really looking forward to tomorrow's treatment but it will be nice to be done with number 8. That will make me 2/3rd of the way through the process.

The 6th Treatment

I had the 6th treatment on Friday the 15th. My absolute neutrophyl count went up a little bit to 180. The time went by quickly and I had no side effects except for some achiness in my arms. I'm in good spirits and glad to be at the half way mark!

The 5th Treatment

I had my last treatment on Friday February 1st. It proceeded even though my absolute neutrophil count was low. Neutrophil's fight against infections. Normal is 1,500 to 8,000. A safe level is 500-1500. Mine was 120. Nobody sneeze!

The day started with a Pulmonary Function Test. I have to have one every month to make sure one of the chemo drugs is not thickening my lungs and making it harder to absorb oxygen. If it does they will stop giving me that drug. The tests are performed on two different machines connected to computers. If you want to learn exactly what they test check out http://www.webmd.com/a-to-z-guides/lung-function-tests

The infusion rooms at Mass General aren't depressing the way I thought they might be. The staff tries to make you comfortable and offers you food and beverages and blankets and heat packs. You can choose a chair or a room with a bed. If you choose a chair, you can see two other people. You are close enough to talk to each other if you want. I've met some really nice people. If you prefer, you could pull a screen that provides privacy. The chairs recline.

The needles they use are very thin and pretty painless. Having said that, I've had WAY too many needles lately and I look forward to getting them occasionally again.

Things proceeded normally during the infusion. I made art (watercolor) with the help of the Artist in Residence, Julie Martini. What a great program. It not only made the time fly by but it was fun and sparked my interest in making art. I had to work left handed even though I'm a rightie because I didn't want to move the arm I was receiving the infusion in too much. Any guesses what I was trying to paint?

My mood is good and I'm taking one day at a time. As of Wednesday night, I've had no serious side effects except feeling a little run down. Then again, I just returned from working in Woods Hole for two days.