Zap Me Baby One More Time (or Twenty)

Tara and I went to see the radiation oncologist today at the new Andreas Cancer Center in our Mayo clinic here in town. We were both very impressed with his knowledge and the conveyance of the information to us. Tara is especially intrigued by the machine and procedures they use since it is right up her professional alley. The doctor described radiation therapy as the "knockout punch" following the chemotherapy treatment. The chemotherapy will shrink the tumors and both doctors hope that the PET/CT scan will show no masses, however the scan is not capable of showing cells on the individual level that the chemotherapy might leave behind. This is the radiation's job, to destroy any leftover cells after the chemotherapy. The radiation will damage the DNA in the cancer cells as well as the normal cells around the area. The normal cells will be done healing after about 6 hours. However the cancer cells, which are quite good at dividing and growing, are not so quick to repair themselves. So 24 hours later, the normal cells are strong again but the cancer cells get hit again while they are already struggling. They will focus the radiation beams at whatever might be left of the spot in my neck, the mass in my chest, and the spot in my lower left abdomen. The therapy will continue for 15-20 (business) days until the cancer cells are totally eradicated. The short-term side effects include a sore throat, pink skin similar to a sunburn, and fatigue. The lower spot might be close enough to some of my intestines and so radiation might possibly cause a bit of nauseousness. Long term side effects include scarring in my lungs, thyroid issues, possible heart disease, and a risk of secondary cancer. But wait, it is not so drastic as it sounds. Doctors always have to present the risks to cover their, shall we say, backsides. This doctor also indicated that this chemo/radiation treatment is in most cases curative. The scarring in my lungs will not cause any breathing problems. My thyroid issues will just require some periodic (annual probably) blood tests to determine the proper dosage of thyroid hormone medication. I'll visit a cardiologist in about 10 years to check my heart but if I engage in the regular heart-healthy activities such as exercising, eating a healthy diet, and monitoring my blood pressure it shouldn't be too bad. The risk of secondary cancer from radiotherapy is significantly less than the risk of my Hodgkin's disease coming back without the radiotherapy. Pediatric patients are at the highest risk for secondary cancer while old people don't really have to worry. I am obviously in the middle of that curve. With my good health history and no use of tobacco, the doctor seems to think my risks are pretty low.

A few more thoughts about the chemotherapy yesterday. I still feel fine, though I am trying to eat less at a time but more often throughout the day. I am really bummed that my plans to enjoy a full rack of ribs at Token last night were frustrated by the surprise phone call. The injected nausea medicine could wear off by Friday so we'll see what happens in the next few days but maybe we'll still make it to Tony's though I may have to downgrade my menu choice. Fatigue could begin to present itself next Monday or Tuesday but that's what lead me to get checked out in the first place so hopefully I can manage it as I have been doing over the last few months. My chestful of surgical incisions has finally healed which makes a big difference in my general feeling of healthiness. I can finally hold my shoulders up and sleep in any position I want. That's all for now. Hopefully my next post will not be about how the chemotherapy side effects have come crashing down on me but stay tuned for more details.

Sneak Attack

There is a new philosophy for treating cancer effectively - surprise the cancer cells and the patient with chemotherapy. Not really true, but when I got a phone call at 8:40 this morning asking if I was going to come for chemotherapy which had been scheduled for 8:00, I was rather surprised. I told them that I had been planning on Thursday morning but she then informed me that it had been changed, only nobody had bothered to tell me ahead of time. I got dressed, grabbed a book, and headed to the clinic. Thankfully Grandma Reed was here to watch Sophie (and Elsie) since Tara and Rita were at the gym. I was a little frustrated, feeling like I wasn't fully prepared mentally. It would have been really nice to have showered and eaten breakfast as well. Tara was more than a bit frustrated but she had calmed down by the time she came to sit with me and things ended up going pretty well. I am back home and feeling, well, normal. They did give me nausea medicine which seems to have done the trick. It should last for at least 3 days and then I have pills to help if/when I need them. I have been advised to graze 6-8 times a day rather than eat 3 bigger meals. Grandma made a hot dish (casserole) for dinner in true Minnesota fashion using no recipe. She mixed leftover ham with macaroni noodles and cheeses, sour cream, olives, and a few other things. I thought it wise to stick to a small portion but will have more later tonight. It seems to be sitting well. I guess the next few days will indicate how the chemo will effect me. If you want more of the technical, perhaps borderline gross, but certainly not gory, details about the actual 4-hour treatment just read the next post. If not, thanks for checking in and so far so good. Oh, by the way the chemo was bumped up because the oncologist will be in Florida (Disney World) on vacation Thursday. I am over the frustration and it isn't the doctor's fault. He really is quite a good doc and the nurses are great. Just a miscommunication that slipped through the cracks. We're over it.

The Nitty Gritty

If you're reading this then you want to know more about the details of chemotherapy treatment for Hodgkin lymphoma. Whether you have a personal interest in my otherwise normal life, you find it an intriguing educational opportunity, or you're just morbidly curious, I'll do my best to remember the details. (Just to highlight my composition skills, I think I did a good job with parallel construction in that last sentence.) This is the closest thing I've done to journaling in a long, long time so it is a good exercise for me. Back to the main focus of the blog - I started taking pills today that are to fight gout. Apparently uric acid is a byproduct as the chemicals obliterate the cancer cells. (Using impressive vocabulary words just seem to make me feel better and express how excited I am to finally have this treated. I've also had a few people say that I write well so I am trying to live up to these expectations now, though it has added some pressure. Forgive me for pointing out my skills above and also later on below. I am just a humble person like that - a few compliments go straight to my head.) My port worked spectacularly. I felt a small poke and then the nurse covered the unit with a clear patch to secure the needle (free wax job later!). They took a blood sample and then we had to wait 45 minutes for the results. The confirmation came back and I was approved to proceed. They started me off with a couple of extra-strength Tylenol. I thought that was great since Tylenol has been a most helpful and trusted companion to help me manage the symptoms over the last few months. Then came the slew of injections and infusions. First, she injected the anti-nausea medicine. Next, came a bag of steroid solution that was hooked into my IV for about 15 minutes. I am not sure of the exact purpose but she said it may make my legs act up, to the point that it might be difficult to sleep. If you recall, my cocktail of cancer chemicals is the ABVD regimen, and they were administered in that order. It was so comforting to watch the nurse put on a protective gown and thick rubber gloves each time she had to administer or hook up a different IV bag. To think that she had to take those precautions for something that was going directly into my body! The A drug was reddish in color and the nurse had to sit with me and inject it over a period of 15 minutes. The next time I went pee, it was orange colored due to the red medicine mixing with yellow urine (I did warn you that there may be a few gross details). The B drug is the one that can be hard on my lungs so for my first treatment they did a small test dose over 10 minutes to see if I would react negatively. This, and the rest of the drugs, were given through IV bags. I did well with the test dose so it was another 10 minutes for the rest of the dosage. They'll take a chest x-ray next time just to make sure my lungs are clear. I was still feeling pretty good and things seemed to be moving along at a reasonable pace. Then she mentioned that the V drug would be about 15 minutes but the D drug was going to take 2 hours. It was a significantly larger dosage amount. I felt fine through it all, but the veins in my hands and arms seemed to show up darker and more noticeably. Tara agreed and we both thought it was a bit weird. Tara had showed up somewhere between A and B and sat in the recliner next to me enjoying the warm blankets. Even though we mostly just read our books it was good to have the company. Did I mention I was in close proximity to the mini-fridge stocked with juices and 7-UP? There are a few perks and we'll see about the downsides during the dark days descending upon me. (Anyone catch alliteration in there? I probably shouldn't say "dark" days since having Tara, Sophie, and Rosa here with me will be so nice but can we get a little sunshine please!) So far so good. It is off to the radiation oncologist tomorrow for more information. We'll know for certain whether it is 4 months chemo + 3 or 4 weeks of radiation or just 6 months of chemo. Typing that plus sign reminds me that I watched the nurse do some calculations to figure out the correct settings for my IV machine. We all use math everyday! I didn't think I'd use my English skills so much but I'll stop pointing them out so I don't detract from the awesomeness of my writing. I realize that I probably should use paragraphs but I haven't figured out the formatting in this program. Thanks for all of your support.

A Foreign Visitor

I now have a "foreign body" inside of me as the surgeon called it. It seems a little weird to me and looks a bit strange as well. I have a small incision on the right side of my chest and a little hole just below my previous neck incision, making 5 scars total so far. (We have pictures but I am pretty sure that most people reading this would just as soon not see them so they won't be posted.) There is a lump under my skin that is probably as round as a quarter and sticks up enough to see it even from a few feet away. I haven't been touching it yet but once I am healed I'll explore around it. From the lump (technically called a port) there is a tube that goes up to my neck (the tube is called a catheter for those wanting an education). It looks like a bulging vein right under my skin. Once it gets to my neck it goes into one of my veins. The advantage of having a port-a-cath is I won't have to get IV's anymore. This will keep my veins from wearing out and save me from the deeper pokes. They'll be able to draw blood for testing, inject the chemo drugs, and also inject the radioactive tracers for PET/CT scans by just poking my lump through the layer of skin. The recovery today was much easier than the recovery was two weeks ago from my biopsy. I only had one small incision instead of two large ones and I didn't have to recover from general anesthesia. I am also taking some of my leftover Vicodin which does wonders. I woke up from a nap at 4:00 and just laid there dozing in and out enjoying not having to move. I'd usually wake myself up since when I lay flat on my back I start to snore a bit. But I just laid there and kept relaxing until the cycle of doze, snore, wake repeated itself for 30 minutes or so. This was fabulous and only possible because of my wonderful wife and her mother taking such good care of me and my Sophie. For those of you wondering about the actual procedure, I was given Fentanyl and Versed so I was in and out, but out most of the time. They put pads over me to give the doctor a sterile area to work in and built a little tent over my head. I was instructed to turn my head to left to expose my neck to the surgeon so I was able to see out of my tent the whole time. Unfortunately nothing prevented the burn of the shots to numb the area but that doesn't last long. For those of you who haven't had the pleasure of that experience, it does feel a bit like how the dentist numbs you up to do a filling. I remember them asking me a few things during the procedure and I remember a bit of pushing that thankfully didn't cause any pain. That's about all I remember though and I am glad it wasn't a rough experience because I'll admit that I was a bit nervous last night. I will be seeing the radiation oncologist on Wednesday the 27th at the Mayo clinic so we'll have more details on that part of the treatment soon. I'll sign off again by saying thank you for all of the support. Everyday I find out about more people who are reading the blog and offering prayers in my behalf. The vast majority of you live many miles away but we truly do feel your strength. Thank you so much.

More Delays and a Few more Thoughts

Well, the nurse called this morning and I won't be starting chemotherapy until next Thursday the 28th. However, I will be done with chemo about 2.5 weeks before fall classes start. So radiation therapy will be at least half done as well. It is my understanding that the side effects of radiation are easier to handle so hopefully fall semester shouldn't be impacted greatly. I was thinking about the title I used for the last post "Positive Diagnosis." In the medical world I guess positive really means something bad, as in yes, you are sick. But in my case things actually are positive. The doctor had to of course leave the possibility of recurrence on the table but he did indicate that the prognosis is very good. After two months I will have another PET/CT scan (the radioactive one) and the doctor hopes to see I am in remission or close to it at that point. The treatments would of course continue until I have completed the standard regimen. I would probably then have CT scans every 6 months for the first 3 years or so. Then maybe annually. But in the majority of cases this treatment is curative. So tomorrow I get my port and then in a week I finally start treatment, just a day shy of 6 weeks from when I first got the news of my mass. Good thing it has not been medically urgent. If it had the doctors would have had me in a lot sooner. They have been great docs and very informative and personable every step of the way. I think treatment and anti-nausea medicine has come a long ways in even just the last 5 years so I feel pretty confident. It used to be that radiation was the only treatment given so I am glad that is not the case here. Thanks for your prayers.

Positive Diagnosis

I went to see the oncologist today. He received the second opinion on my biopsy from the Mayo clinic. It confirmed what they already told us. I have Stage IIb Hodgkin Lymphoma. It is stage II because I have two different spots of tumors but it is not stage III yet because both spots are above the diaphragm. The "b" part is because it has caused me to have fevers and night sweats. There are two treatment possibilities: 4 months of chemotherapy followed 3-4 weeks of radiation or just 6 months of chemotherapy. My oncologist has talked with a radiology oncologist at the Mayo clinic who feels that we can proceed with radiation. I'll meet with him in the next month or so to talk about it. The benefit to mixing in radiation is that longer chemotherapy means worse side effects. It helps to mix the two treatments for a shorter time each than to do one type of treatment for a longer period of time. When I do the radiation part of the treatment it will be everyday Monday through Friday for the 3-4 weeks. The chemotherapy will be every two weeks. I'll be spending 5-6 hours at the clinic. They'll have to test my blood, I'll meet with the doctor, and then the infusion will take 3 hours or so. Friends and family can come visit and sit with me. I have my own TV with headphones, I can bring my laptop, and I can eat while I am there. Or I can just enjoy a nice warm blanket and kick back in my nice oversized recliner. I'll be on the ABVD drug cocktail but I'll spare you the full names unless you really want them. The A drug can be tough on the heart but my heart scan came back normal. The B drug can be hard on the lungs and we haven't gotten those results back yet but I am sure they are normal. The other piece of good news was that my bone marrow was normal. They will inject anti-nausea medicine with the chemo and also give me a prescription to take home. With the advances in medicine I shouldn't have to deal with a lot of nauseousness. It may make things taste funny though so I might have different cravings. I may or may not lose my hair. I can't be out in the sun but that doesn't bother me much. With these particular drugs I shouldn't have to worry about sores in my mouth but I will be fatigued about day 6 or 7. I will be starting next Monday or Tuesday and the nurse will call us tomorrow to let us know. Friday of course is my date with the surgeon to put in my port. Thanks for everybody's support. Tara's mother got into town yesterday and it is great to have her help.

What's next?

I did a separate posting about my experience with the medical exams below for those interested in reading it. We talked a few minutes with the doctor and it sounds like the bone marrow results can take up to two weeks. He is also waiting for the second opinion on the biopsy sample from the Mayo clinic. Once we have those results and my heart and lung test results we can proceed with treatment. I get my port and catheter put in Friday the 22nd so I don't have to keep getting poked for all of my treatments and blood tests and wear out my veins. I could foresee my first chemotherapy being Monday, April 25th, the day after Easter. Then it would be every other Monday for 6 months (12 total injections). There is the slight possibility that it may be 4 months of chemo if we also do radiation but we'll talk over more specific treatment details once all of the test results are in. This is a bit longer than we had originally thought. We must have misunderstood the doctor and confused the length of a cycle versus the number of injections in a cycle. The two months we were thinking did seem a little short. We'll do another PET/CT scan after 2 months (I think) to check the effectiveness of the chemotherapy treatments. So at this point we'll wait for the oncology office to call us next week with results and also gear up for the 3-hour procedure for inserting my port in about a week. Stay tuned for more details.

I Survived the Tests

This morning I went in for a bone marrow aspiration. First they took some blood and then I had to lay on my side and the doctor numbed my hip. That burned a little bit but then I just felt pressure. The doctor must have used a needle shaped like a screw because I could tell he was making a twisting motion. It was a bit painful when they actually started to draw out the marrow. I just took deep breathes as the nurse suggested and it was over pretty quickly. Then they needed to take a small piece of bone. That hurt a little bit but not as prolonged as the aspiration. I think the worst part was just being stuck in an uncomfortable position for so long. The incision on my chest was kind of squished but was more of just a discomfort than pain. They put a pressure bandage on me that I can take off tomorrow morning. I had to lay there for about 40 minutes and they came and checked my blood pressure three times before I could go. My hip still aches a bit but nothing I can't manage. Feels like a bruise from falling. Next I went to the cardiology department. They stuck me in the other arm to put in an IV. He injected something that had to circulate for about 20 minutes. Then I laid down on the table and he injected me with the radioactive stuff. He positioned the camera (a big rectangular box) at an angle to me and it was close enough to be against the corner of my glasses. I had to lay there for 8 minutes while the camera recorded the images of my heart. Then he moved it so it was parallel to my chest above me. Another 8 minutes after that I was done. It seemed like a long time. I had a little bit of a longer break as I made my way from the clinic to the hospital. It was time for the pulmonary function test. She had me do things like breathe in, hold it, and then breathe out as long as I could while I had a tube in my mouth. I could see the computer monitor and normal breathing looked like a nice sine curve. We all use math everyday (to quote one of my favorite TV shows). At one point I was enclosed in a little booth (maybe it was pressurized?) and I had to put my hands against my cheeks and pant. The last test was after I had used an inhaler 4 times. I had to breathe in and then blow hard into the machine. It wasn't as bad a day as I thought it might be and hopefully I passed everything. We'll find out the results over the next week or so.

A Marathon of Tests

Thursday is test day, not for my students but for me. I'll be spending my day at the clinic and the hospital (which are connected). First up in the morning is a bone marrow aspiration. This will be with the oncologist and hopefully we'll have a chance to talk with him about treatment specifics. Things have moved kind of fast without too many answers, just more tests being scheduled. After the oncologist I'll go to the cardiology department to have a scan of my heart. They'll inject some radioactive tracers and see how they circulate in the blood to observe the injection fraction (thanks to the bishop for explaining - he's a cardiologist). Looks like I'll have to stay away from Sophie again so I don't cause any mutations in her. After cardiology I will have a pulmonary function test to check out my lungs. Apparently the chemotherapy can be tough on the lungs and heart so they want to judge their strength at this point. It is my understanding that before chemotherapy starts they will put in a port and catheter so I don't have to keep getting IV's for blood tests and the chemo injections. So we could be looking at starting everything as early as the middle of next week. Hopefully more treatment details on Thursday but at least tomorrow I get a chance to breathe. It has been a busy day of phone calls and getting details at work taken care of. Thanks again for every one's support.

What We Know and What We Don't Know

We learned today from the surgeon who did my biopsy last Friday that I do in fact have Hodgkins lymphoma. He mentioned that his office would probably be contacting me again to arrange for placement of a catheter in my chest for chemotherapy treatments. The oncologist also tried to call me but with my teaching schedule and their staff meeting I have yet to talk to him. So the details on treatment are slim right now but hopefully I will have more information in the next few days. From our earlier conversations with the doctor, there are a few tests to run before things really get started. How do I feel? Well, we were fully expecting this news so it was not a great shock. We've had a few weeks to prepare and I've been able to get ahead on my semester plans so the impact on work will be minimal. Financially we're in a good spot, especially with a supplemental cancer insurance policy kicking in so I don't have to worry about teaching this summer. Sophie is so very active and it will be hard for me to not be able to play with her as usual. I hope her little mind can understand and she will still know how much I love her. We have wonderful friends that take good care of her so Tara can come to the doctor's with me. Tara's mother is coming out in a week and will stay three weeks while I start treatment and that will also be a great blessing. So you see, the Lord has blessed us with everything we need to face this trial. His tender mercies are everywhere and I am so grateful for it. All I have to do is rest and make it through the treatments. The prognosis is good for this well-researched cancer so we are very hopeful. Thank you all for your support. It means the world to us! Jon (and Tara)

A Big Thanks!

I wanted to take a minute to thank everyone for their prayers on Jon's behalf today. Also thank you to those of you who were fasting along with me today. We are truly feeling the power of your prayers. They strengthen us each and every day, and fill us with peace. We are overwhelmed by the love and support of our family and friends. It was a little strange for me to be on the other of end of things today. I told Jon, I'm usually the one being poked and going to surgery. I'm not used to having to wait in the waiting room. The surgeon told me that the surgery went very well, and they should have an answer as to what we are dealing with the first part of next week. He said that the lab is 75-80% certain that it is some type of Hodgkins Lymphoma, but there is a chance it could be an infection. We will keep you updated and let you know what we find out next week. I also want to let you all know, that I am doing okay. A few family members asked me today, how I am holding up, and I am doing remarkably well. As I've said to many of you, the Lord is sustaining us. He is blessing me with the strength I need to take care of Jon and Sophie and to stay strong and supportive of Jon. Today made things a little more real, and now that it's here, I'm not sure if I'm truly ready for all of this, but ready or not it's happening. Thank you again for all the prayers.

Two scars for me

Well, I survived surgery and am doing well enough to type this entry. The surgeon decided to check out the lump on my neck as well so I've got an inch and a half incision on my neck and a two inch incision on my chest. Waking up wasn't the most pleasant experience. I had a bit of a headache and was pretty sore. I immediately knew that he had decided to cut my neck and it has been more painful than the incision on my chest. The first few hours were pretty tough but once my pain pill started working I felt much better. I am doing quite well now actually. I can move easier but I do get light-headed if I try to do too much. I wasn't ever too nauseous except for a brief moment after going from the wheelchair to the car. I ate a fantastic dinner that our friend Rita made for us without any sign of upset stomach. Sophie has been an angel today and we appreciate Johanna taking such good care of her for us. So you may be wondering what the results were. At this point we still can't say for certain but the surgeon's comment was that he was about 75-80% sure that it looked like Hodgkin's lymphoma. The spot in my neck was just fatty tissue. Probably from eating the fudge and Reese's from my package earlier this week. On a side note, Tara beat me by 1 point in my new game earlier this week and we just finished watching Blind Side. Thanks again for the fun package. Love you all and we'll keep you posted next week as more specifics are talked about.

Surgery Eve

It is the night before everything changes. I've never been subject to physical pain - no broken bones, no surgeries, no need for anesthesia or pain medication (I am not counting wisdom teeth removal). The unknown of what to expect is what is most unsettling. However I am appreciative of all the support. Today my teaching assistants (there are 5 of them) presented me with some gift cards and an electronic sudoku game. Their thoughtfulness has added to the calm and peace from my family's support so I feel pretty good at what I am facing. We'll keep you updated though the next post may be from Tara.

Another Lump

Two days to go until the biopsy. It is feeling much more real now. The doctors had found a small spot in my neck on one of my scans but it was not big enough to use for a biopsy. Just yesterday I was in my office and could feel the bump. Next time I looked in the mirror I realized that I could see it, the first visible evidence of my condtion whatever that turns out to be. I must admit I am a little nervous as things get closer to happening. Thanks everyone for your support.

A nice Surprise

Last night Tara and I were in bed talking about the biopsty this Friday and my recovery over the weekend after my biopsy. It really made it sink in and feel more real that this is actually happening. I've only ever been put under to have my wisdom teeth out. I've never had a broken bone or had any incisions made before. I have no idea how I am going to react. This will probably be my first time taking any pain medicine stronger than ibuprofen or tylenol. I just worry about not being able to lift my baby and play with her like I do now. I hope she understands. Just as things were starting to be more real and a bit more scary, I got a package from my awesome family. It had the intended effect and put a smile on my face. Anyone who knows me well knows how I love presents. As you can see below I got a few games that were at the top of my list, a movie, a hilarious shirt, and a cap for my soon to be bald head (not sure about the recorder?). Some sweet treats completed the package. But even more than that, the letters from my siblings and their children were wonderful. Their thoughts and prayers and the picture from Jenn really lifted my spirits. Thanks so much to my wonderful family. It really was too generous but I so appreciate it.

Patience

This week has been about learning patience. We still have another week until the biopsy and a definitive diagnosis. For those who may be wondering why they are taking so long, different doctors have independently said that my condition is not medically urgent. Meaning that another week or two is not a big deal (at least physically - it makes a big difference emotionally and mentally). I have also had to be patient with my symptoms. These night sweats are getting a bit old. I usually have to use the restroom between 2-3 am and I go back to a damp bed wearing damp clothes. Not the best feeling. However, I haven't been as feverish or fatigued the last few days which has been nice. Also, I pretty much eat what I want because I have lost weight without trying and it seems that it doesn't matter what I eat. It might be nice to gain a few pounds before I start chemotherapy and don't feel like eating much. We'll see if lots of sweets and fatty foods will do the trick. Thanks everyone for your support.