How it all happened

I've reordered all of the post here, starting from the begining. I'm aproaching 1yr post treatment and all is well. I'm greatful to my wife who supported me through this challenge and recorded these entries. I didn't realize what an ordeal it was for her to take care of me as well as our two girls with out any relief. I will often think back to those sick days and realize how greatful I am to be normal again. We so often don't apreciate the good times until we have to experince the bad. There are many things in life worth living for and it's a matter of discovering those things that make each day special.


11/27/2004
The Beginning

During the summer of 2004, Nick noticed a lump just above his collarbone. He finally mentioned it to me at the end of October. I encouraged him to see a doctor. On Nov. 5, he saw a doctor at the Student Health Service. She referred him to an Ear, Nose and Throat doctor, whose name was Dr. Lavertu. Nick saw Dr. Lavertu for the first time on Nov. 10. At that time, Dr. Lavertu did a fine needle aspiration and biopsy. He asked us to come in again the following week for the results. On Nov. 16, Nick had his follow up appointment with Dr. Lavertu. He told us that the pathology report said there were "abnormal cells of lymphoid origin," and that is was probably Hodgkin's lymphoma. We had been doing our research and were expecting this diagnosis. Dr. Lavertu scheduled Nick for an excisional biopsy to confirm the diagnosis. This was done 3 days later on Nov. 19. While Nick was still in the operating room, Dr. Lavertu came to the waiting room to tell me that it was indeed Hodgkin's. Although we knew it was before, it still hit both of us hard. We went ahead with our planned trip to Virginia for Thanksgiving. We got the final pathology report by email from Dr. Lavertu on Thanksgiving morning: nodular sclerosing Hodgkin's lymphoma. We are lucky that this cancer has an excellent prognosis. We see this as a bump in the road and hopefully in a year or two, we'll be looking back on this time and saying, "Remember when..."

11/29/2004

We returned home from Virginia last night to find several messages from Dr. Lavertu's office on our machine. One was about a PET scan scheduled for this morning. Nick had to be at the hospital for the scan at 7AM and missed his morning class. The scan went well and he was back at school at 9:30. The other messages were about other appointments for this week. On Thursday at 11:30, Nick will have his first appointment with the oncologist, Dr. Omer Koc, at the Ireland Cancer Center. He is lucky that this is just across an alleyway from the Dental School clinic. Also on Thursday, at 2:20, he is scheduled for a CT scan. Dr. Lavertu told us treatment would be chemo and possibly radiation, but hopefully we will know much more about what the next 6 months hold for us after our meeting with Dr. Koc.

12/02/2004

We had our first visit with Nick's oncologist, Dr. Koc, today. The PET scan showed that he has stage IIA-non bulky disease. The stage II part means that he has tumors in both his chest and his neck, but not anywhere below the diaphragm, like the inguinal nodes or the liver or spleen. The A means that he has no systemic symptoms, like fever, night sweats or weight loss. The non-bulky part means that the tumors in his chest are not too large. All of that is good news. He also had a bone marrow biopsy done, but the doctor told us that he really does not expect to find any cancer in the bone marrow. Dr. Koc told us that Hodgkins frequently starts in chest and then travels to the neck, so this is as good as we could have hoped, staging-wise. Treatment is 4 cycles of ABVD (chemotherapy) followed by radiation. Each cycle is 28 days long and he will receive the ABVD on days 1 and 15 of each cycle. His first chemo day is December 17.

12/10/2004

We are down to our last week before chemo. This week was for banking sperm, which is now done. Nick has his final exams this week. Next week he will be in the clinic all week and then he's scheduled for his first chemo at 2pm on Friday, 12/17. We are both excited to get started and nervous about what will happen.

12/17/2004

The first chemo treatment is done. We got there at 2pm and the nurse gave Nick an IV and drew blood to check his blood counts, which were normal since he hadn't had any chemo yet. The nurse started the zofran (anti-nausea drug) through his IV. He had to have a test dose of the bleomycin to make sure he wasn't allergic to it. We had to wait an hour after that before he could get the bleo. In the meantime, the nurse gave him the adriamycin (IV push), the vinblastine (IV push) and the dacarbazine (IV drip-1 hour). He was then able to get the bleo (IV push). We left at about 5:30. The dacarbazine was a little uncomfortable going in, but other than that, he feels fine right now. We have a prescription for zofran and compazine. He'll take the zofran tonight and tomorrow and the compazine if he needs it, but hopefully he won't. It basically went pretty much as we expected. Dr. Koc stopped in to see us and he had one unexpected thing to say. He had presented Nick's case to the Lymphoma board, where the possibility of doing 6 cycles of ABVD without radiation was brought up. Apparently the success rates are pretty much the same for 4 cycles + radiation and 6 cycles without radiation. So now we have that to think over. We also got copies of his PET and CT scans. We'd been curious about the sizes of the tumors in his chest and also the size of the node removed from his neck. The node removed from his neck was 2.5x1.8x0.8 cm. The largest mass in his chest was 6x3.1cm. We'll have another update tomorrow about how he's feeling!

12/30/2004

We left for Virginia for Christmas the day after the first chemo. Nick had a lot of trouble with stomach pains, but no real nausea. After a few days, he had swollen, painful lymph nodes in his neck and under his jaw. He couldn't eat anything but soup for several days because it hurt to swallow. He started feeling better around Christmas Eve. We had a great Christmas in Virginia with his family. On the 26th, we left the girls with his parents and drove to WV to meet my family for a few days of skiing. Nick was able to ski Monday and Tuesday without a problem and we had a great time! He felt pretty much normal, but did get a little more winded than usual. Now we are back in Cleveland and the second dose of chemo is this afternoon. Tomorrow morning we will fly back to Virginia for my brother's wedding. Hopefully Nick won't be feeling too bad!

12/30/2004

After a long afternoon at the hospital, the first cycle of chemo is done. Nick now has a prescription for Prilosec, which will hopefully help with the stomach pain he's been having off and on since the last dose. His white blood cell count was down quite a bit today-from 6.4 last time to 1.9 today. His oncologist said he likes to see the neutrophils, a component of the white count, above 500, but Nick's was under 500 today. We still went ahead with his treatment though. If his white counts continue to be this low, he'll have to begin injections between treatments to keep them up, so he doesn't get sick. His hematocrit was also a little low today, but his red blood cells and his hemoglobin were normal. His platelet count was also normal. Right now he is feeling OK, but not great. Hopefully the Prilosec will work for the stomach pain and the Zofran will work for the nausea and we'll have a good trip to Virginia for Chris and Stephanie's wedding.

1/02/2005

We are back from our whirlwind trip to Virginia. Nick has his second chemo treatment on Thursday afternoon. On Friday morning, we had to get up at 4am to catch our 6:15 flight. We got into to Roanoke around 9:45. The rehearsal was that afternoon, so we didn't have much time to rest. Nick was a groomsman and Anna and Leah were flower girls. After the rehearsal, there was the rehearsal dinner and then a New Year's Eve party at my parents' house. Nick and the girls slept through the whole party. The wedding and reception were on New Years Day. Nick made it through, but he was very tired by the end. Then we got up at 7am this morning and had a flight at 10:15. We finally got back to our house around 3:15 this afternoon. The prilosec has really helped Nick's stomach pain this time around. His nausea has been slightly worse, but not too bad. The jaw pain and throat pain have started up again, so he is back to eating just soup. He feels pretty run down right now. If the last time is anything to go by, he should begin feeling better by Thursday. Then hopefully he'll have a good week before it starts all over again.

1/11/2005

Nick continued to have stomach pains off and on after the last chemo, especially after eating some ribs (big surprise!), so he now is also on Reglan to try to control that. And the hair loss has begun! For about the past week, his hair has been thinning. Someone who didn't know him wouldn't think that it looked thin, but I can tell and so can he. When I take a pinch of hair and pull, I end up with a hair or two and he can't feel it come out at all. Luckily his hair is very short, so unless he starts getting patchy spots, he won't have to worry about it. The third chemo is on Friday, Anna's 4th birthday. He also has an appointment with the oncologist and with a nutritionist that day.

1/15/2005

Nick was supposed to have his third chemo yesterday. His parents and brother are here visiting from Virginia for Anna's 4th birthday (also yesterday) and his mom came to the appointment with us. His absolute neutrophil count was only 120 today-way, way too low for chemo. A normal ANC is over 2500. So we have to go back on Monday. Hopefully, it will be high enough then to do the chemo. In the meantime, Nick is very susceptible to infection. I think he'll be staying in this weekend. No shopping and no church.
1/18/2005

We went in yesterday for the second try of treatment #3, the first treatment of the second cycle. His ANC was 440, above Dr. Koc's cutoff of 350, so he got the treatment yesterday. To get us back on a Friday schedule to help decrease missed school days, there will be 18 days instead of 14 before his next treatment, which will be on 2/4. The treatment went fine and we found out that the chemo nurse he had yesterday has a brother that lives in the same small town in rural Virginia that I grew up in-small world. He was feeling OK last night, but fairly nauseated this morning. He went to school though and it is mid-afternoon and he isn't home yet, so he must be doing OK. Either that, or he had an important patient whose appointment he didn't want to cancel. Nick is scheduled for his mid-treatment PET scan on 2/4. When we talked with Dr. Koc on Friday, he brought up a few possibilities for the rest of Nick's treatment. He said that if this PET scan is completely clear, we can talk about the possibility of doing only 4 cycles of chemo and no radiation. He's also talked about 4 cycles of chemo with involved field radiation and 6 cycles of chemo without radiation in the past, so it looks like there are 3 choices. After doing research on the long term side effects of the chemo and the radiation and the overall and event-free survival rates of combined modality therapy (chemo + radiation) and chemo alone, we are leaning towards no radiation, but we'll have to see what the midway scan shows and talk it over with the doctors. Only two months later, I am already realizing how naive the last sentence of the first entry of this journal was. I said, "Hopefully in a year or two, we'll be looking back on this time and saying, "Remember when..."" HA! I can already see how this will change things forever. I can only imagine the stress that post-treatment scans will bring, imagining that the scans will show relapse rather than the continued remission that we hope for. I know that any time Nick feels anything slightly odd, we'll panic about recurrence. At this point, I don't see how we can ever go back to normal life and not be paranoid about cancer. Being paranoid about cancer IS our normal life now.
1/24/2005

Nick got tired of all the shedding and shaved his head on Friday. His hair was pretty short before, but now it's gone. Luckily, he doesn't have any funny bumps on his head or anything, so he doesn't look too bad. I guess I should get a picture of it. This week has been interesting. The first day after chemo, Tuesday, wasn't too bad and Nick spent all day at school. On Wednesday, Thursday and Friday, he spent most of the day at home and slept a lot. By Sunday, he was feeling pretty close to normal. Since we have a few extra days between treatments this time, he'll have close to 2 weeks of feeling good before it starts over again.

2/08/2005
Treatment #4 and midway PET scan

Nick had his 4th treatment on Friday. His white counts and ANC were the best they've been since he started treatment-2.8 and around 720. The treatment went fine. He doesn't have a port, so he's getting his chemo through an IV in his arm, alternating arms each time. He's had some pain in his left arm, which had had 2 treatments already, so they slowed down the dacarbizine drip, from 1 hour to 1.5 hours. Hopefully that will prevent any serious vein pain. Side effects have been the same as before-generalized yucky feeling and some nausea the first couple of days. He should start improving pretty soon. His midway PET was yesterday and that went fine. About 8 or 9 friends from school and church shaved their heads in support of Nick. We need to get a picture and put it in here. Nick was really touched. His hair is really falling out now. I didn't realize how thin it had gotten until I saw the other guys that shaved their heads. Even though their hair was the same length as Nick's, it looks so much darker because it is so much thicker. From a distance, Nick looks like a blond with very short hair-but he's NOT a blond. He just doesn't have any hair!
2/08/2005
PET results-and GOOD ones!

Nick got an email this afternoon from Marla, Dr. Koc's nurse. This is what it said:

Nick,
I'm not sure if you retrieved your own PET results or not, everything is good. No abnormal uptake. All areas from 11/29 PET are completely resolved. Excellent! Hope you are feeling well. Call me with questions/problems.
Marla

We couldn't have hoped for any better news! This means the cancer is already gone, after only 2 cycles (4 treatments)! We are so excited. We are now hoping that he will have only 2 cycles of chemo left and no radiation. We knew it was a possibility that it could be gone after 2 cycles, but we weren't expecting it. I just can't believe it!!!

2/20/2005

Nick had his 5th chemo treatment on Friday. His WBC was 1.7 and his ANC was around 420 again. He's been sleeping a lot this weekend. We all had to stay home from church this weekend because Anna is sick. I couldn't leave Anna home with Nick and I couldn't send Nick with Leah while I stayed home with Anna, so we all had to stay home. He threw up for the first time on Friday night, but hasn't since, so hopefully that won't become an issue. His peripheral neuropathy has gotten worse. His fingertips have been numb since the first treatment, but he now has tingling extending down his finger and in his feet. His hands also fall asleep at night, and then wake him up, so he hasn't been sleeping too well. Dr. Koc gave him a prescription for this, Elavil. This is a particular concern for Nick because he is in dental school. So far, it hasn't bothered him while working and we'd like to keep it that way! We talked about treatment options with Dr. Koc again. He said that he felt "good" about doing 3 cycles of chemo plus radiation. That would mean only one more chemo treatment. He said he felt "OK" about doing 4 cycles of chemo with no radiation. We still don't know what treatment Nick will end up with. Apparently people are reading this journal. Dr. Koc said he heard about Nick's PET scan from one of his patients who'd been reading this website!

3/06/2005

We went in on Friday for what we were hoping was going to be Nick's last chemo treatment. Instead, it was delayed until Monday because his WBC was 1.5 and his neutrophils were only 300. So, hopefully tomorrow we'll be able to finish up the chemo. On Wednesday, Nick has a consultation with the radiation oncologist. After much research, thought and prayer, we've decided to do the radiation. It's kind of odd, because initially we were leaning away from radiation, but now, we both feel it is the right decision for Nick. So, Monday should be the last chemo. And on Wednesday, we will see what the radiation oncologist has planned for Nick. The treatment on 2/18 went well. Nick was back at school for a full day on Tuesday. Also, the medication that he started for the peripheral neuropathy that had been waking him up at night seems to be working, and he is sleeping better now
3/17/2005
No more chemo!

Nick is done with chemo. His last treatment was 3/7. On 3/9, we met with the radiation oncologist, Dr. Kinsella. That went well and he will start the radiation process on 3/23, although his actual treatments won't start that day. He'll have about 4 weeks of radiation. So he gets a little break before starting up with the radiation.

4/09/2005
1 week of radiation done!

I have made it through the first of 4 weeks of radiation treatment. In preparation for the treatment, I had another CT scan so the doctors could map out the targets. After receiving the contrast via IV, I immediately felt nauseous; four hours later I finally threw up! I also got 3 pin point tattoos on my chest and sides to help lineup the radiation machine. About a week after the scan we started radiation. It is a pretty quick procedure. I lay down and they position my body within the laser cross hairs. Then the technicians leave the room and a buzzing noise sounds to indicate that the machine is on. I go Monday through Friday before school starts. So far radiation treatment is far less bothersome than chemo. I haven't felt any side effects except for possible a horse throat and cough. This could also just be something that is going around. Dr. Kinsela said that I probably won’t notice any effects until the 2nd or 3rd week. We shall see.

4/20/2005
Halfway

I've made it through 2 weeks without any noticeable side effects from radiation. It is a very fast procedure, about 10 minutes every weekday morning before school. I'm looking forward to the end of all of this. Jen and I are planning a trip to Disney World to unwind form this long winter!

8/25/2005
Three Month Check-up

I had a CT scan before my appointment with the radiation oncologist. I turned down the doctor's request that I take IV contrast during the scan. This has always made me nauseous. The last to scans I have had I have vomited afterwards. Well I saw how much nicer the images were with contrast. They suggested I take an anti amenic prior to the next scan and try the contrast again.

Everything looked good on the CT. The tumors in my chest were markedly smaller than the original scan. He didn't seem to think there was any sign of active cancer after the first three months. We discussed a fertility assay, which Jenny and I will likely do within the next few months. Life moves on for another three months...