Picture of Reassurement

This is my most recent PET scan image. There are a few sections that are bright which represent areas that were attracted to the radioactive glucose. One is my heart (center bright spot), one is my bladder (low brightest spot), and another is my brain (top bright spot). All of those organs naturally attract glucose. Another wavy section above my bladder and to the left is my inflamed terminal ileum. This is a good visual of the affect of Crohn's Disease. This image is visual proof that my Crohn's Disease recession period has ended. :( Too bad, that was the best part of chemotherapy!

Radiologist vs Oncologist: and the winner is....

I recently had my latest PET scan (Friday June 20th) and my oncologist called me last week to give me the the results. He said that the radiologist who read the scan wrote in his report that the findings were "recurrence of lymphoma". This obviously concerned my oncologist but he was skeptical having recently met with me and having seen my progress and strong health. He met with the radiologist and the two doctors went through the images together. When my oncologist ordered the scan, he had tried to give a medical history including lymphoma and crohn's disease. In the relay of that message the crohn's disease portion was omitted. During their meeting my oncologist clearly saw that the positive indications of the PET scan showed inflammation of the terminal ileum, which is the exact site affected by my crohn's disease. With this new information in hand, the radiologist agreed that the results of the scan indicated crohn's inflammation, not a recurrence of lymphoma.

A slight scare, and all because not all the information was properly relayed from one doctor to the other. Rebecca and I spoke to my oncologist in person today, and he assured us that he is absolutely positive there is no recurrence. I trust my oncologist completely.

I will now go back for a CBC in about 6 weeks, and assuming I remain asymptomatic I will not go in for another PET for another 6 months. So sometime around Christmas time I will hopefully repeat this entry with an update of continuing to be cancer free.

Who-hoo!!

Welcome back, Hair!

It has been a long time since my last post, and I have been doing very well. My neuropathy has not improved, but I have stopped taking Lyrica, and the pain in my feet has not returned. That is a good sign that the nerves may be able to repair themselves. My chemo brain effects my memory and concentration, and I am constantly having that feeling when you walk into a room and you don't remember why you are there. But, I am dealing with it pretty well. I finished another class, which was a difficult class, and managed to beat the class average on both tests and the overall grade. I am also doing very well in my new job at Williams. Oh, yeah, I never mentioned that. Adam Aircraft went out of business Feb. 11, 2008 and everyone was laid off. I spent about two months looking for a job and then was hired as a Facilities Engineer at Williams. I also worked for REI for a short period to make sure I was not without insurance for too long. Adam Aircraft is being restarted, and I was offered to return, but I can't afford the risk of losing my job and insurance again. I will stay with Williams.

Otherwise, things are progressing nicely. I visited my oncologist recently, and he is impressed with my progress. I have had a few scary instances where I have had labored breathing, and even wheezing, but Dr. Kenney is not concerned enough to run tests just yet. I will go in for my first 6 month post cancer PET scan in early July, and will inform Dr. Kenney if the breathing situation persists or gets worse. If needed, I will have some lung tests performed to see if I have sustained any lung damage due to chemo. I was actually more scared of a recurrence. I had a plural effusion as one of my early symptoms of Hodgkin's and I was afraid that it was returning. I used to be optimistic, but the first thing I thought of was cancer. Besides a recurrence or lung damage, it is spring time and the symptoms could simply be due to allergies or some sort of pulmonary virus or bacterial infection. However, I don't have a stuffy nose and I have not been sneezing.

Anyway that is all of the updates I can think of right now. I am posting a picture of my hair, which has made a full recovery. It is the same color it was before, but is softer. When it first grew in, it was sooo soft, like baby hair. It is slowly getting coarser, which actually makes it easier to comb. I will update again after my PET scan.

Cancer-free party

Nick may wish to say that he shaved his head in support, but actually he shaved "to bald gracefully."
Thanks Nick for your emotional support :)

I really wanted to post this picture to show how much of an impact eyebrows have on one's appearance. I think this was the epitome of illness for me, even though I had been declared cancer-free and I had stopped chemotherapy weeks prior to this picture.

Cancer Free Me!

Today it is official...I am cancer free! I met with my oncologist this morning and he informed me that my latest PET scan was negative. This does not come as a surprise because my PET scan midway through my chemotherapy was also negative, but it is still very welcome news. The only hurdle left is to remain cancer free. That is where things get complicated. My oncologist and I definitively decided today to forgo radiation treatment. This decision could prove costly because all the data from clinical trials with the Stanford V regimen involved chemotherapy in conjunction with radiation therapy. Therefore it is unknown how critical radiation is to the success of Hodgkin’s Lymphoma treatment. The statistics are good, but again they are based on both treatments.

So why did we decide to skip the radiation knowing all of that? Mine is a unique case. As I have stated in previous posts, my cancer was spread out to lymph nodes throughout my abdomen, and none of those were very large. Some individual cancerous nodes clumped together and the largest of those clumps were about five centimeters in diameter. The general rule is to radiate lymph nodes larger than five centimeters. Most Hodgkin’s Lymphoma cases involve large masses instead of a large spread. In those cases it is easier to decide whether or not radiation is advised by adhering to the five-centimeter rule. It can be argued to radiate just to be sure so that the standard protocol is followed. However, in order to do that in my case, almost my entire abdomen would need to be radiated because of the vast spread.

What is the possible harm in radiation therapy? Radiation therapy, while it had improved over recent years by utilizing three-dimensional imagery and a more focused beam, there are still many significant risks. Heart disease has been associated with radiation and so has many secondary cancers including lung cancer. This occurs when those organs are subjected to radiation due to the proximity of the targeted cancer. In my case, since the entire abdomen would require radiation, my heart, lungs, liver, and even intestines would be exposed. So in essence I would run the risk of developing any of a large number of secondary cancers as well as the risk of heart disease.

So my choices became clear: run the risk of a Lymphoma relapse vs. run the risk of secondary cancers. If I were to get a relapse, I would be treated by an autologous bone marrow transplant in combination with severe chemotherapy. This treatment is very intense and I would likely be hospitalized for months, but the success rate is very high (~75%). On the other hand, the secondary cancers including lung and liver do not carry as high of a success rate. In addition the radiation exposed to my intestinal tract could cause complications with my Crohn’s Disease. As I said, we decided to forego radiation. My oncologist did say that my chances for relapse are higher with this decision, but he could not estimate a percentage.

My next PET scan will be in approximately six months, so until then it is a waiting and hoping game. In the mean time I have been instructed to continue taking Lyrica to treat my neuropathy symptoms. My oncologist also informed me that many of his patients experience the symptoms for years after chemo and sometimes they are permanent. In those cases, the patients are forced to learn to cope with the numbness and pain. I return to visit my oncologist in two months so he can monitor my progress.

Finally, I asked my oncologist what to look out for in-between PET scans that would indicate a recurrence. As I suspected, he told me to watch for the classic symptoms of frequent fevers, extreme night sweats, weight loss, and enlarged lymph nodes. The last one I did not experience the first time, but it is the most commonly noticed symptom. I hope to never experience it, as it will likely indicate bad news.

Delayed Reaction

I am not a fan of this picture, but it is effective at showing that I have recently lost my eyebrows and most of my eyelashes. I don’t like the picture because I look tired (probably from hiking up the steep streets of Seattle) and because my eyebrows look grey. I think they look grey because my new eyelash buds are lighter colored, and my skin below is white. Those two things in combination with my few remaining dark eyebrow hairs and the end color mixture is grey. At least that is my theory.

I am not sure why my eyelashes and eyebrows waited to fall out until almost a month after my last chemo treatment. Maybe the hairs died a long time ago but did not fall out until the new hair growth, which is itchy, caused me to scratch. The scratching may have forced the hairs out. I will ask my oncologist during my appointment that will follow my PET scan, which is tomorrow.

Otherwise, I feel less tired than I did a month ago. Things are improving with two exceptions. I have had two occurrences of a strong stomach pain during the night. Both times I went to bed feeling normal, and then awoken with extreme stomach pain. The first occurrence was Christmas Eve/Christmas Morning, and the second was the night before Rebecca and I flew back to Denver (Jan 5th). Both nights the pain lasted over an hour and slowly dissipated enough to fall back asleep. The second night I was awoken twice and both times the pain lasted about an hour. I will ask my oncologist what he thinks this could be, but it could be associated with Crohn’s, not my cancer or cancer treatment. If necessary, I will ask my gastroenterologist as well. I will meet with my gastroenterologist after my PET scan because fortuitously PET scans are very effective at showing inflamed sections of the digestive system. These pain occurrences could be an ulcer, a symptom of my GERD, a symptom of my gallstone, or something else entirely...we will see.

Cancer Shmancer transitioning to Crohn's Shmohns

It has been two weeks since my last chemo treatment, and I am starting to see some improvements. My energy level is slowly increasing and some new "hair buds" are appearing on my head. Sometimes after chemotherapy new hair can be a different color or can be curly instead of straight. This is because some of the chemo drugs alter DNA. The change is usually temporary and typically lasts about a year before the hair returns to normal. At this point, it is hard to tell what my hair buds are going to become. In some types of light, they look blonde, in others they look my usual dark brown. I am hoping they turn out blonde and curly. I've done the dark brown thing; it would be interesting to have something else.

My neuropathy has not changed, which is to be expected. My new drug, Lyrica, makes the pain in my feet bearable, but I have recently developed an itchy rash that may be an allergic reaction to this new drug. The rash started on my forehead, then moved to my face, and is now on my forearms and neck. It is really strange because it literally moves throughout the day. My doctor asked me to do some experimenting by stopping the Lyrica to see if the rash goes away. If it doesn't the Lyrica is not the culprit. If it does go away I will have to weigh the pros and cons and make a decision of which one I would rather deal with.

Another side effect that seems to be lingering is my hoarse voice. I think that it has improved slightly, but it is still difficult to hear or understand what I say by the end of the day. If it continues, my oncologist will refer me to an ear-nose-throat doctor. Otherwise my port was removed on Monday so the only thing remaining is my final PET scan which is scheduled for Jan 9th. My oncologist is very confident that it will be negative.

On the bright side I am very excited about starting to feel better, especially my energy returning. Rebecca and I recently joined a gym so that I can start to strengthen my muscles which I feel have atrophied somewhat. I am excited about regaining my strength and finally begin enjoying this beautiful state to which I was so excited to return. I am looking forward to skiing during the winter, and then hiking and maybe rock climbing in the spring and summer. A lot of my colleagues at Adam enjoy rock climbing, and they have already tried to bring me along.

Rebecca and I are flying to Seattle on New Years Eve to celebrate both ending chemo and beating cancer. We are renting a car and will spend a couple of days in Portland as well. We may even take a day trip to Canada. We both have had a rough few months so we decided to take a week to recharge our batteries.

Today I also met with my gastroenterologist to discuss our plan for my future Crohn's management. Because of the immune suppressing chemotherapy, my Crohn's is practically in remission. So for now, I am not going to be on any medications. My upcoming PET scan will show the extent of my affected intestinal tract. More decisions will be made after my doctor reviews that scan. We discussed surgery to remove the affected area and start fresh, and we discussed drug management. One thing is certain: immunosuppressant drugs will not be considered unless all other options are exhausted.