The End and the Beginning

I was sitting in the doctor's office this morning reflecting upon the last year during the brief interlude between the nurse leaving and the doctor coming in to the room. I realized that I really do feel so much better now. Aside from the bottoms of my feet still tingling, I realize that I am pretty close to normal again. I can actually say that I have energy again and that the fatigue is gone. Here are a few of the things I was thinking during this pondering moment.

My sweet baby, toddler now really, has been such a blessing and motivation during treatment and recovery. However for most of her life she has not had a father of his usual demeanor and strength. Despite this she loves me still (and I might say best but don't want to offend Mom). It was 10 months ago, when Sophie really was my tiny baby of six months, that I began to feel the fatigue, fevers, and failing health. During the holiday season last year, but unbeknownst to us, my body was beginning the fight against cancer. It might actually go back further since the line separating the excitement and exhaustion of new parenthood and the symptoms of disease is somewhat blurred. Now approaching the coming holidays I feel strong, healthy, whole, happy, excited, blessed, emotional, grateful, and full of life. I could go on but I'll just say that life is great. I look forward to the great formative years to bond further with my girl.

It was 8 months ago that I finally listened to the advice of family, particularly my wife, that I went to the doctor and began some tests. Blood work led to the recommendation for a CT scan.

It was almost 7 months ago that I left the doctor's office reeling from the results of that CT scan showing a large mass in my chest, an emotional wreck wondering how to tell Tara that the next step was to see an oncologist. Such fear existed then but it was quickly replaced with a calm, full of faith and hope.

It was about 6 months ago that a PET/CT scan suggested and a biopsy confirmed the specific diagnosis of Hodgkin's lymphoma but the type of cancer was a welcome alternative to what could have been a more devastating condition.

It was 4 months ago that a second PET/CT scan showed that the cancer was gone and the tumors were shrinking. What welcome news it was to hear that the difficult treatments were having the desired outcomes. It certainly helped to face the rest of the process knowing that I was being cured.

It was 2 months ago that chemotherapy was finished. What a great day that was for me and my family. The poison that had killed the cancer but ravaged my body was going to slowly fade and I was able to enjoy a few weeks of normalcy and begin teaching again.

It was 1 week ago that I finished radiation therapy. That wasn't so bad but I won't miss the daily trips the clinic. It never got much worse than a little fatigue and a feeling that something was stuck in my throat.

It was 34 years ago that I entered this mortal body when it was my turn to join the family here on Earth. What a support you have all been to me through this trial, even with the distance between us. I am excited to visit this holiday season, a much different person than last year.

It was 10 years ago that my family began when I was joined to my wonderful wife Tara. We fought this battle together and though I may have the physical scars from it, we both have made triumphs together emotionally and spiritually.

It is for eternity that I will be with all of you loved ones that have been such a strength through this tough time in my life. You'll also have to put up with me in this life for a while longer it seems. Thank you everyone so much for everything that you have done to help me. My dear family and friends, you have truly carried us as angels sent from a loving father in heaven.

This will be my last regular post for a while since it is time to put this behind me. It is a big part of who I have become today but it is not something that will burden me any longer. In case you are interested, I will have another scan in January to make sure things are still looking good. Until then, thanks and best wishes.

I'm Done!

Yesterday I had my last radiation treatment. What a happy day! The side effects have not been too bad. They certainly don't compare to how bad chemotherapy was. The feeling of having something stuck in my throat is much more pronounced but I still would not say that it is painful. It certainly hasn't stopped me from eating and I had some popcorn just the other night. I have been quite tired the last few weeks but the fatigue should wear off in the next few weeks. After that I just have some follow-up appointments to see how things are going. Next week I will meet with my medical oncologist again and I should have a better idea of what tests will be done and how frequently they'll monitor things going on in my body. I also have to get my port taken out but that should be another same-day surgery. I am so glad we are about done with this. It can only get better from here.

Downhill or Uphill?

I am happy to report that I have now finished 10 of my 17 radiation treatments, a bit over halfway in case you need help with fractions. So in that respect you might think I am on the downhill slope now. However, the side effects are now starting to ramp up and are expected to last at least a week after my last treatment. In that sense I have an uphill stretch ahead of me.

Towards the end of last week I could tell my esophagus was beginning to feel the effects of radiation. It hasn't been painful yet but when I swallow it feels like something is stuck. The doctor said this was the first sign of fun things to come. So maybe he didn't use the word fun but he told me I could start taking ibuprofen to help with the inflammation. He also prescribed another type of mouthwash in case the type I already have doesn't work for me. The mouthwash I got during chemotherapy has lidocaine in it to numb things up before eating. This new prescription has hydrocortisone and tetracycline in it instead. Both mouthwashes have common ingredients of maalox, nystatin, and benadryl. Not sure why you need to know that but if you're interested feel free to do the research online yourself. After all, this is about me and how I am feeling.

Sunday afternoon I started to feel like I was getting sick with a normal sore throat but I haven't noticed any other symptoms with sinus issues or fever so the doctor thinks it could all be due to radiation. We'll see but I had a student come make up a test Friday in my office and she wasn't better yet - she kept hacking away, spreading germs in the air I am sure. I any case I have been very tired the last few days and suspect it is the fatigue that I was told to expect. I face this all with optimism because I know that in about 3 weeks I will be in the clear. Luckily this is not as bad as chemotherapy and I have been spared the nausea they said was possible. I'll keep you posted but we're getting closer to the end.

Hot Zone

Tuesday I entered a bomb shelter to continue my treatment regimen. The metal door was over a foot wide and is magnetically sealed after the techs leave the room. The process does not take very long and I do not feel a thing. I lay down on a slightly skinny table. They made a mold of my arm position a few weeks ago so I lay down on my personal pillow with my arms above my head while they strap my ankles together. The the table slides me under a radiation apparatus about the size of a truck tire that is secured by a C-arm above me. They use lasers from the ceiling and walls to line my tattoos up with my original positioning. Then, if that wasn't enough they take a standard x-ray of me to make sure I am properly aligned. Two arms are mechanically opened on either side to take the x-ray. After I am in the proper position the computer takes over an radiates me for 5 minutes. There are 9 angles in my treatment so the machine rotates almost 360 degrees by the time we are done. I get shot twice from each angle. There is a buzzing sound for 7-8 seconds and then it repeats. There are metal leaves that shape the radiation rays so sometimes the beam is curved and at different angles. I guess I could have just said at the beginning that it is all highly technical and precise. The radiation goes right where it needs to go and at a pretty low dosage.

They tell me that it will take 2 weeks for the side effects to peak at which time I can expect a sore esophagus and fatigue. It will probably last a week or two after my treatments end. I am slated to go 17 consecutive business days, meaning I'll have my last one on my birthday. What a happy day that will be! They thought I might get nauseous because the radiation gets the top of my stomach but so far so good. I have really enjoyed the past several weeks of feeling good but this will be nothing compared to chemo. Almost to the end!

Life's Too Short - Get a Tattoo

The last week or so has been the best for a very long while. I have felt so much better physically and it has also been a boost to get back to work. Today was a reminder that things are not quite finished. I went to see the radiology oncologist to find out more of the plan for radiation therapy. I talked with the nurse and then the doctor about side effects and long-term concerns. It was much of the same as we talked about back in April. Then they took me to the "Simulation Room."

Essentially they did a dry run of the treatment. They scanned me with a CT machine that had an infrared camera as well to make it a 4D scan. They used the camera to monitor the rise and fall of my chest from breathing. It was all very high tech. The walls and ceiling had laser shining out from them. They used a memory foam device to hold my arms above my head and then took a picture of it so we remember how I held my arms. After the doctor looked at the scan, they made some permanent markings on me so they can line me up the same way each time. So basically I got 3 tattoos, though they are minuscule dots. They put ink over my skin and then poked me with a needle. I have a spot on my breastbone and under each arm. The whole process is very technical and precise which allows them to use less radiation. The doctor will consult with a physicist (basically an applied mathematician) and plan the treatment in detail. I will then go for 17 consecutive business days for the course of treatment.

I don't have an exact start date yet but expect it to be the week of the 12th sometime. Each treatment should take about 20 minutes from walking in and out of the door. And luckily the clinic is only 5 minutes from home. The main side effects will be an inflamed esophagus and fatigue. I don't think it will be as bad as chemo was to deal with. I'll keep you posted but for now I am just enjoying feeling great!

The Magic Words

I had my scan yesterday. It was pushed back from last Thursday but the delay was no problem because I wasn't scheduled to see the doctor until today regardless. The doctor used the words "COMPLETE REMISSION" today when he showed us the results of the scan. What a wonderful relief. The chemotherapy has done its job and I don't have to have any more of it. I am excited about that. We went to dinner to celebrate. With school starting this week, things have been looking up with so many welcome changes. I feel like life has become new and fresh again. It is hard to believe all that has taken place between that first appointment with the oncologist in March through the appointment today, but we made it. I say we because this has been an ordeal not just for me but for my wife Tara who has been with me every step of the way. Also my little Sophie to a certain extent. A huge thanks to all of our visitors and all those friends here close to us for the help they have given us. And the prayers of everyone else have been a significant blessing.

I suppose I shouldn't get too excited. I still have radiation therapy. It has the potential to make me very tired and, because of the location, make my eating tube irritated. But I think that will be more bearable than chemotherapy has been. The next step is to make an appointment with the radiation oncologist and find out what plan he recommends. I'll let you know as soon as I find out. These changes are so great and the last week has been my best week in months. I feel great besides some tingling feet. That should wear off in a few weeks.

Happy Days

I had my blood drawn yesterday and my levels looked good so I was set free from shots. I made the comment to the nurses that I felt better then I have in many weeks. I have bounced back from the chemo and my other issues have resolved so if I can just catch up on sleep I might start to feel close to normal. Tomorrow I'll get scanned but unfortunately my appointment to discuss the results is not until Tuesday afternoon so we'll have to wait. I think that my oncologist will send me over to the radiology oncologist to discuss my radiotherapy plan. It will be nice to have that in place and finally have a firm conclusion date. Stay tuned.

Is that a light ahead?

Today has been a good day. I was able to enjoy a great Sunday dinner cooked by my mother. I feel a bit stronger and sense a welcome change approaching. I have made it through the worst of my most recent, and hopefully final, chemotherapy treatment. I am confident that my scan Thursday will show the doctor that we are ready to move on from chemotherapy to radiation. Is that something to be excited about? I think so. It should be much more manageable with the most prominent effect being fatigue with a bit of a sunburn. But hey, I've been dealing with tiredness since Christmas (and before - Sophie came along 14 months ago and we know what having a small baby can do). The other welcome change will be going back to work. I have enjoyed being lazy with a perfect excuse to do so but I haven't accomplished much and I think it will help see me through to the end if I can feel like I am once again providing for my family and using my talents.

I look forward to a good week. The things that I can manage are going very well. The things I can't control, the numb soles of my feet and lack of energy, are not so bad that I can't enjoy my last few days of a leisure life. We'll see what my lab test on Tuesday and scan on Thursday reveal. I'll keep you posted.

Last Chemo, Probably

For those of you checking my blog consistently, I apologize that it has been almost 2 weeks since an update. It was a rough time after the last chemo with complications coming to a head last Monday and Tuesday (the 1st and 2nd). I had two women independently tell me that I now have an idea of what childbirth feels like. I told the first one that I was sure that wasn't the case but after the second one I decided there must be something to it. I won't go into more detail other than to say that this time I am starting earlier with copious amounts of Citrucel and Miralax. If that's TMI (too much information) I apologize. I had several good days though and we were able to get out of town to relax a bit at a friends cabin.

As the title suggests I may not be done with chemotherapy as previously thought. The doctor went over a few "unfavorable" characteristics with me yesterday before my last chemo. The three things that might make the difference are the fact that I had chills and night sweats and that my tumor was close to "bulky" at 9 cm. Bulky is technically 10 cm or more. My blood test for inflammation came back very high at 112, well over the 50 they look for. That lab result is what led to that first CT scan way back in March. Seems like a long time ago but at the same time it has gone pretty quickly.

So Thursday the 18th I go for another PET/CT scan, the one that makes me radioactive. The doctor expects it to come back normal but wants to be thorough. I anticipate he'll send me back over to the radiology oncologist for my radiotherapy. It will be nice to know the plan for that particularly when I start and the duration of the treatment. I do plan on starting the semester on the 22nd, just 1.5 weeks away. After a long summer of accomplishing nothing it will be good to get back into the swing of things.

For now, one more chemo under my belt. As usual I was a bit tired when I got home, had a wavering voice last night, and trouble sleeping. Now begins the descent into the drug-delayed, delightful, debilitating bout with nausea. Hopefully by Saturday I'll be on the rebound. I did get the order to take preventative antibiotics with a low white blood cell count. They'll check it on Tuesday to see if it has gone up or if it needs some help. It's good to have Mom and Dad here this time.

Getting Closer

I just have to keep reminding myself that each day is one closer to the end. I had chemo on Monday and I hope I am at the tail end of the worst days. Tuesday night it started to hit and Wednesday and today haven't been fun. I've been really sick to my stomach along with the other fun side effects like tingling feet and a bad taste in my mouth. But I am getting closer and that is helping me stay on the positive side.

It didn't seem to make a difference that one of the drugs was removed from my chemo cocktail. It saved me 30 minutes in the chair but hasn't seemed to make a difference in the severity of the recovery. The extra week between chemo sessions seemed to help me feel a little better at the beginning but made for a harder swing from "normal" to "chemoed." I say "normal" because I don't remember the last time I have felt truly normal. My surgery site has healed well and I am grateful for that. Monday I'll have more labs done to see about shots again. Not much else to report now. Things are fairly repetitive at this point.

Update

I had my labs done yesterday and the doc cleared me for chemo on Monday. My counts were up and I didn't have a shot yesterday. Today is the first day in a week that I won't be at the clinic or hospital so I am going to enjoy my time off. The aches and pains have subsided and now I am just a bit tired from a week of poor sleep.

The doctor went over my lung test with me this week. The key indicator that they look at had dropped 22% which is too much. Usually anything over 15% is enough to stop the B drug. So for my last two rounds I will only have 3 drugs injected instead of 4. It will save me 30 minutes and more damage to my lungs. I don't think it will have too much impact on the after effects though. Getting closer to the end each day.

A Week Off - Sort Of

I went to the clinic today as usual for chemotherapy but the doctor decided that we would put it off for a week. He was okay with this for a few reasons. I am in remission and have had 6 of 8 (75% for those of you who prefer to not think about numbers) of my treatments. Also my white blood cell count was very low today and the doctor does not want to risk an infection. So instead he sent me home after giving me a neupogen shot and telling me to take antibiotics. I go back the next two days for more shots and then Friday they will check my blood again. The plan is to have chemo on Monday provided everything else goes according to plan.

So I kind of have the week off, at least from being sick from chemo. I still have to go to the clinic every day and I can already feel this first shot making my bones ache. And of course I have my surgery to recover from. I didn't think it would be a big deal but my incision has gotten a bit sore today, especially if I am up and about too much. So the plan is to take it easy and get plenty of rest. Same goes for next week too I guess. I feel a bit cheated out of time to feel good. I missed last week and now this week and next week are out as well. That will make a fun four in a row since my last good week. But who am I kidding, I haven't really been normal since this whole thing started. Almost to the end though.

Dr. Harper's "How the Surgeon Stole Chemo Eve"

Despite the clever title, I will not be writing any rhymes. I could also have called it, "Delay is a Pain in the Butt." And this would have been literally true. For those who haven't already heard, I ended up in the ER Sunday morning after pain (in a somewhat embarrassing spot) became incapacitating. The surgeon on call verified the ER doctor's suspicion that I had an abscess. I was taken up to the OR and gratefully put under general anesthesia for the procedure. They admitted me to the hospital and hooked up some IV antibiotics because of my compromised immune system. Most people would have had this done under local anesthesia and gone home the same day. I felt much better after waking up but the night in the hospital was pretty restless. I look forward to my own bed tonight.

I am due for chemotherapy tomorrow but that is up in the air. I will report in the morning as ordered but the doctor may postpone the infusion. The surgeon said that chemotherapy may delay the healing process of my incision site. I prefer to go forward as scheduled and get this over with even if it means a double whammy of recovering from both surgery and chemo this week. I have to thank my superwife again for all she has done and our great neighbors and friends for watching Sophie and helping with meals. We appreciate it SO much. I'll post an update either way tomorrow.

Good Days are Here Again

I am happy to report that I am doing well and expect the rest of the week to be enjoyable. I still have to deal with tingly feet and fingers and a little fatigue but the rest of my lovely chemo companions have mostly departed. I went to the clinic yesterday for lab work and my levels are way up on their own so no bone-aching shots this time either.


I realize that a lot of my posts might have a negative slant so I thought I would remind myself of the good things that are abundant during this trial. My wife has been stellar in taking care of Sophie and me. She has been strong even through physical difficulties of her own. We've had a lot of support from friends and family as well. My daughter has been an angel (okay so she only takes one nap a day and is a very picky eater, often throwing her food on the floor) and I love her so much. She makes me so happy and does the cutest things like peekaboo with palms out and holding her hands behind her back at random times, mostly while walking.


I have learned what pain truly is. I will not go in to detail about the joyful, secondary effect of chemo that caused this pain but I can honestly say that I have never felt pain to that degree in my life up to this point. Of course I've never broken a bone or spent time in a hospital in my life. I hadn't had surgeries until now but this was even more painful than that. Thankfully it has subsided to discomfort but annoying. I have also learned to be more empathetic with my wife and the things that she has had to deal with in her life. As expected I have learned and grown from this trial and continue to do so. Also as expected, we have also been tremendously blessed.

How quickly I forget

The doctors have really done well figuring out how to get us cancer patients to take all of our medicine. I usually feel pretty good by the time each chemo treatment comes around so I go to the clinic willingly to get it done with. Then it doesn't take long before the joys of chemo return. The last couple of days have been as expected - tired, nauseous, and no appetite. I get up in the morning and food doesn't even sound good. I try to eat and drink a bit here and there and usually by dinner time I am hungry enough that I will eat a fair amount whether it tastes good or not. Last night - it didn't taste good. Tonight it was pretty good. And that is not necessarily a reflection on the menu or the cook. We have appreciated having meals brought in the last two days so Tara can tend to Sophie while I get some rest. This usually means getting her out of the house. It helps her to not have to worry about cooking, especially since there is no guarantee that I will eat much of it anyway.

I hope that another day or two should be long enough to get back to a happy place. I need to if I am going to agree to two more chemo sessions. The back of my tongue is starting to turn white again so I am expecting a bad taste in my mouth for a few days. We'll see if I need to pull out the magic mouthwash again. This post probably seems similar to this same time two weeks ago so I apologize for that. I'm in a bit of a rut, however we are nearing the end of the chemo portion.

My breathing test went okay yesterday. I didn't have to do as many routines as the first time but they did close the airtight booth and ask me to pant again. I suppose I'll find out the results on Tuesday with my next blood test. Sadly, if they stop the "B" drug it only saves me 30 minutes during each of the two more chemo sessions. It isn't the drug that causes numbness which would have been nice to get rid of. I think my lungs are doing well though and I will be happy about that.

6 Down and 2 to go

Well, I am not really done with the sixth treatment yet. The infusion went well yesterday and as usual made me very sleepy. And as usual later that night it made it difficult for me to sleep. I am expecting the nauseousness to kick in tomorrow but by the end of the week I will be done with round 6.

Tomorrow I go in for another Pulmonary Function Test. One of the chemo drugs is toxic to the lungs. Nothing has shown up on the chest x-rays but the doctor wants this test done just in case we need to stop that particular drug.

My laptop went on the fritz last Saturday so sorry I am not posting as frequently. The school should have it fixed soon I hope. Other than that things are going well. I just try to take advantage of the good days I have - which makes for all play and no work. Better change that soon.

Doing Fine

I went to the clinic yesterday for my usual blood work. My levels were low but not low enough to need shots. I was glad. The doctor said that the shots can interact with one of the chemo drugs that can effect my lungs so he doesn't want to give me the shots unless absolutely necessary. I won't complain about that. I am feeling pretty good and expect to enjoy the rest of the week as well as the holiday weekend.

Update

I suppose it is past time for me to post about my condition. I am not sure how many of you are at the edge of your chair waiting but I appreciate those of you who are interested and concerned about my welfare. Thursday and Friday after chemo are usually the worst and I was pretty nauseous the last few days. Today has been a bit better but my appetite still suffers. Many things just don't sound good even though my stomach is really upset. My tongue has started hurting again despite my daily antacid pill. Last night I used my magic mouthwash for the first time. That stuff really works, making my mouth numb after a few seconds. I just can't enjoy the real taste of many things. The skin in my mouth just feels raw like it needs to be replaced. That may be a little bit of an exaggeration but it does feel different and no matter what I eat I have a terrible taste in my mouth. I've been chewing gum quite a bit.

This treatment was the fifth one of eight but I'd say number four was the worst. Generally they are getting tougher and despite the good news from the scan, it is hard to get excited knowing that I have 3 more rounds. The nauseousness has been no fun at all but now the other side effects are becoming more pronounced and prolonged. I fear that each remaining treatment will get slightly worse. I try not to do it often, but thinking about sitting in that chair again fills me with anxiety and dread. It may seem odd but I really have an adverse reaction to thinking of the smells of chemo day. From the smell/taste of having saline injected into my veins to the smell of the soap they use in the bathroom, it just makes me sick to think about it.

Besides my mouth and my stomach, my nerves have been the other difficult thing to bear. The bottom of my feet are numb and it is quite bothersome when I try to lay down to sleep. Shoes can be uncomfortable as well. My fingers aren't too tingly or numb but my nail beds fell weird - not painful, just weird.

Let's turn to more happy things. My hair has not all fallen out and those that remain have grown out normally. I've lost a few eyebrow hairs but not enough to notice and Tara would tell you that they are still pretty wild. I don't have to shave my upper lip anymore but sadly my neck hairs still grow out just fine. We've had a great outpouring of support here from friends this week with 3 dinners and some yard work done by our dear ward members. It has been very humbling and uplifting for us. We'll get through this just fine.

The Results are In

I am sorry that is has been over a week since I posted any information but it has been a good week leading up to today's chemotherapy session. Last Wednesday they drained some more blood and determined that I didn't need immunotherapy shots. My white count was at 2.7 and the doctor felt I was ok without the shots. I think there is another blood level they look at in conjunction with the cell count and I think that was in the acceptable range. I had a pretty good week last week and enjoyed having Randy here with us so we could celebrate Sophie's and Tara's birthdays and Father's Day. They were all fun days.

Thursday I went for a chest x-ray and everything was clear. The doctor checks it every month to see if the "B" drug is damaging them. I haven't had any coughing or wheezing and nothing showed up on the x-ray so that was good news.

Thursday I also had my PET/CT scan. If you recall this is when they inject radioactive sugar and look to see what parts of the body attract it with high metabolic activity. My oncologist said, "PET scan does not show cancer. This is good." We reviewed the pictures today and sure enough the only glowing, active parts were my brain, liver, kidneys, and bladder. These should all be functioning in a normal body. I am glad they are since it is nice to be able to pee and think on occasion.

The chemotherapy session went well today though we got a bit of a late start since every chair was full. I was one of the first ones there at 7:30 this morning and I'd say half of them left before me. They also do infusions for arthritis, anemia, and other types of patients who require IV medications. They just get normal IVs and don't have to stay as long. I am beginning to recognize a few faces that are on the same rotation as me though we don't have a lot of opportunity to talk. However everyone loves Sophie and thinks she is the cutest (which I would have to agree with). Tara stepped out for a minute to make a phone call and all of the nurses offered to take Sophie when she started to get antsy. I am very sleepy today and will probably get to bed plenty early. I already feel a bit nauseous and don't feel like eating much so we'll see how the next few days go. I anticipate not eating a lot, resting quite a lot, and trying to forget my numb, tingling extremities. That seems to be the pattern after chemo - the nauseousness should be gone by Saturday, the sense of taste returning Monday or Tuesday, but the numbness lasting indefinitely.

WARNING: Medical terminology used below for those interested in excerpts from the official reports regarding my scans.

Chest x-ray: The lungs are clear with no infiltrate, effusion, or masses seen. The cardiomediastinal contours and bony skeleton are unremarkable for age. Negative PA and lateral chest unchanged from prior.

PET/CT: Resolved anterior mediastinal, subcarinal, pretracheal and left neck base hypermetabolic activity compared to prior study. Residual non-avid lymphadenopathy in the anterior left upper parasagittal mediastinum, largest node with an oblique AP caliber of 27 mm. (The doctor explained that this meant the lymph node was still enlarged as it takes the body a while to dispose of it. However there was no metabolic activity that signals cancerous growth.)

Things are good. The chemo has worked but must continue to make sure any lingering cells are killed. The tumors are gone but the scan would not show individual cancer cells that may still remain. The radiation will wipe out the rest after chemo is done. I can manage the side effects knowing that it is working to help my body heal.

The Good Old Days

After a tough end to last week, yesterday and today have been great. I expect another good day tomorrow and then it is back to the taskmaster. Wednesday I go back to the clinic to have my white count checked and I will probably have shots W-Th-F based on how the previous cycles have gone. This time I'll keep up on pain management from the start and hopefully that will help. I also have my PET/CT scan on Thursday and we should hopefully see no tumors. I will not have the results until Tuesday when I go in for chemotherapy again. I probably could have gone in Friday afternoon or Monday but I didn't see the sense in making another visit to the clinic. I spend more time there than I care to but thankfully my out of pocket maximum for insurance has been met so no more medical bills for me. Now if the state can just stay in business so I can keep my insurance and the paychecks coming in we'll be good. Thank you for your support everyone. Your prayers and fasting have had a very tangible impact in my life.

Retraction

Well, it seems I may have overreacted yesterday. It appears that I may have been dealing with actual cancer symptoms rather than chemotherapy effects. It was a tough day to be sure, but had I taken Tylenol earlier it may have been easier. As the day wore on I began to wonder if I were sick and had Tara take my temperature. I was not feverish but when my muscles started to ache more I decided to try Tylenol. I hadn't worried about it before because I assumed this was all due to the chemo treatments and fatigue. Though I was not feverish it felt as though a fever had broken after the medicine began working. I no longer needed a blanket and I actually got warm. I felt a lot better and more energetic. Last night I woke up chilled and took Tylenol again. Sure enough, just as when this whole thing started, I woke up damp. The night sweats were back.

I am feeling tons better today and while I am glad the chemo effects aren't as drastic, I am a little more anxious about the upcoming scan. I hope this has all worked and we find that the tumors gone.

The Proverbial Brick Wall

Yesterday was much as expected. I was tired and a bit nauseous but it wasn't too bad. Unfortunately the inevitable build up of chemicals in my system is taking its toll. My fingers and feet are constantly tingling now but the Prilosec and colase seem to be taking care of a lot of the digestive tract issues. I am grateful for that because fatigue has arrived to join loss of taste and appetite. Up until now I've been a bit tired however I've usually been able to brush it off and work through it. Today that changed. It's been a physically tough day with a mixture of emotions on top of that.

Let me start with the good news. We are excited for the arrival of Tara's dad tomorrow. The company will be great and we'll have the privilege of celebrating Sophie's first birthday, Tara's birthday, and Father's day with him. Tara has been busy cleaning and grocery shopping in preparation for his arrival. Dealing with my inability to help with the housework today has been as hard as dealing with my physical hardships. Tara hasn't been feeling well either but she has been diligently taking care of me, Sophie, and the house. She is a wonderful wife and I could not make it through this trial without her. I just feel bad for being so useless today and realizing how tough that is on Tara. I am just so tired.

My tiredness is no longer a function of the sleep I get or don't get. My muscles are just tired and they ache whether I am moving or not. It takes so much energy to climb the stairs or get off the couch. This has made today very difficult for me and I think I'll look back on this as a turning point in my treatment. I am about halfway through chemotherapy and the honeymoon period is now over. Things will be different now, I am afraid, but I will take advantage of the good days when I have them.

My stomach is doing ok, not great, but ok today. I was hungry but afraid to eat lunch. I was fearful that it would make me nauseous again but the medicine seems to be working. I was nervous that it wouldn't taste good but Tara made some stuffing (don't ask me why that sounded good) and it had strong enough flavor for me to enjoy it. I am also grateful for Crystal Light since water doesn't taste good. I can still enjoy drinking lemonade though. I am optimistic that even if I remain tired, my appetite and taste will return. I think I could live with that.

I am confident that we'll be okay through this even though the road is getting harder. The real test and trial is upon us now but I know we can do it. Hopefully my post hasn't been too depressing because it has helped me work through my minor, but tearful, breakdown today.

Here's a shout out to my family at our reunion in Utah. I hope you're having fun for us. We miss you.

Dead Eyebrows Walking

It is 5:00 am and 79 degrees outside. I woke up for a 4:30 bathroom break and have yet to get back to sleep. One reason may be a bit of subconscious anxiety over another treatment today and an alarm clock ticking down to beep at us in 2 hours. The hair I still have has actually grown a bit and my eyebrows are still solidly attached to my face. However, I've noticed my moustache getting thinner. It would be similar to a reverse Hitler style if I were to let the stragglers grow out. This is all highly important information for you as a reader, I am sure, so let me also share a few more thoughts from a chemo addled brain in the early morning hours.

Sunday we were enjoying a pleasant evening outside at a friends house and the lovely Minnesota bugs were out in force. One reason I haven't drifted back into peaceful sleep is the constant itching of my ankles, feet, and elbows. I am comforted by the thought that my chemo-enriched blood has hopefully been unpleasant for them to digest, possibly ending there short, miserable existence.

Yesterday was the day I have dubbed Chemo Eve. The day before I have my next infusion is a special day since I am usually feeling my best relative to the two weeks prior. We celebrated by ordering shrimp at Red Lobster and it was delicious. Later I asked Tara if I could open one of my presents. Strangely, and sadly, there were none to open !? I do have my second box of board games due to arrive later this week. I check the UPS tracking number at least twice a day in anticipation of a solid delivery date. Currently they are in Harrisburg, PA.

That's the story at two hours to lift off. I hope your day is as fun as mine.

Here I Go Again

I've never looked forward to my chemotherapy sessions but have not necessarily had adverse feelings about them either. Call it ambivalence or acceptance of what is required but I didn't mind my chemotherapy sessions until now. I am not looking forward to this Tuesday. I hesitate to use the word "dread" but it is probably appropriate.

The first chemotherapy session was quite a whirlwind. If you recall, I went rather unexpectedly two days earlier. But I was looking forward to getting started after so much time waiting after tests, labs, and diagnosis. I wanted these tumors out of me. I was fine going into round 2 because the first one had gone so well and I knew I could handle it. Then the issues in my mouth occurred but I was still optimistic going into round 3 because I got the medication and mouthwash to help with the major side effects I had been experiencing thus far.

But now I've realized the toll this is taking on my body. This last week was pretty tough. I am definitely feeling more fatigued. I have more trouble sleeping on top of it so I am tired because of that too. The last round of shots really made my bones ache - last night it was my femurs. And I lose my sense of taste for almost a week though I concede that the first 4 days or so I don't have much of an appetite anyways. I know this is necessary but I am to the point where I am ready to be done with it. I am actually surprised that I have done so well up to now and I suppose that is the blessing I should focus on tonight. I am truly blessed with every one's support.

My Aching Bones

I went for one last shot today. My white blood cell count was 5.8 (just above the low end of normal) but the doctor still wanted me to get a shot so I am high going into chemo on Tuesday. This round of shots has been more difficult. My pelvis started aching early this morning and my legs are also starting to ache. This means that the drug is working though because my bone marrow is busy producing white blood cells. It feels similar to my bone marrow biopsy but that only lasted a few minutes and this keeps coming back. Hopefully with some ibuprofen and tylenol I can manage the next few days.

More Shots

I went to the clinic today for some lab work and my white blood cell count was at 2.4 (low again). I had another shot and will get one on Thursday and another on Friday after which they check my blood again.

Each round of chemo seems to have produced a different side effect. This time my fingers and feet have been tingling and numb for the last week. At first I thought it was from the steroid they give me before the chemo drugs. They had mentioned it could make my legs jumpy and give me trouble at night when I am trying to go to sleep. It turns out though that one of the chemo drugs can have this effect on my nerves. It has been quite annoying but nothing to be done about it. I've learned to handle the rest of the side effects with medication or diet and I think that is why the previous side effects are not as prominent anymore. I may have to deal with tingly nerves for the duration of chemotherapy.

I have been having good days this week but I am more easily tired. It is somewhat intermittent though because yesterday I was able to mow and edge the lawn for an hour but today I was pooped after a leisurely 40-minute walk with Sophie and Tara. Nonetheless, my appetite is back and today things started tasting normally. For a while even water didn't taste good (thank goodness for crystal light). So for the rest of this week I expect the shots to help my blood count go up. I also expect to eat without guilt and lounge around because of the fatigue from "my condition."

Pulling my hair out

Though Sophie may cause me a bit of stress from time to time, I can't blame her for my hair loss. Yesterday after drying off from the shower I noticed a lot of hair on me and in the sink. I pinched some between my fingers, gave a good tug, and out came a few dozen hairs. It didn't hurt at all since the chemo has killed the roots. Upon closer inspection I could see on the hair when the chemo had started. Towards the root it was thinner and lighter. Tara shaved my head this afternoon so that I don't shed long hairs all over the place. We didn't go all the way to skin but this way I won't leave a trail behind me. I kind of like my new look and it's just in time for the warmer weather. My eyebrows and arm hairs are still safe for now but we'll see if that stays.

I am feeling a lot better today compared to Thursday and yesterday morning. My appeptite has returned and I am not so nauseous. The other side effects have all been managed with medication so other than taking more naps the last few days things are going pretty well.

Feelin' a bit Green

I thought I'd post again now that I've had a chance to rest and catch up on some sleep. Tuesday Sophie and Tara came to the clinic to bring me lunch and visit. Sophie got into the recliner with me and took a big stretch. She kept her hands over her head for a bit and just kicked back with Daddy. She actually sat with me for quite a while but it helped that Mommy was feeding her. We enjoyed almost an hour before Sophie started to get a bit antsy and unmanageable. While she was there I noticed nurses, patients, and other visitors watching her and smiling and waving.

Yesterday was a pretty good day and I even pitched in with the housework by doing some vacuuming and mopping. I also organized the pantry and closet shelves. I was tired by the end of the day but was feeling pretty good. Today, however, my stomach feels a bit unsettled. I hope the pills can keep it at bay enough so that nothing comes back up. The next few days will probably be this way but I look forward to a good week to follow.

3 Down and 5 to Go

It's been a while since I've posted but just assume that no news is good news. The last 6 days have been pretty good ones. This time I am armed with magic mouthwash to help and I am taking Prilosec as well. Hopefully I can manage the side effects before they get too bad.

My blood work looked good this morning with my white blood cell count at 4 (remember it got down to 1.8 and back up to 6.9 and that 4-9 is normal). My pre-chemo levels were between 8 and 9. I will go back next Wednesday (8 days from now) to have it checked again to see if shots are required. My chest x-ray came back clear. The doctor wanted to check it since the B drug can damage them but so far so good.

I'll sign off now because I am extremely tired and don't want to risk rambling nonsensically.

Shots Work!

I went to the clinic again today for the 5th day out of the last 7. My white blood cell count has rebounded up to 6.8 so I can mingle with the people again, and let's face it, my public needs me. Well maybe I exaggerate a little bit since the people that need me are here at home with me already. Did you notice the new picture of me with my baby? She is gorgeous (and I was told that I looked good too but that is open for debate). It will be nice to have the week off from medical appointments until chemo on Tuesday the 24th. It was a rough weekend during which I periodically swished a mixture of Mylanta and children's benadryl to soothe my burning tongue. The heartburn has been a bit more harsh this time to the point that I am losing my voice. Other than that I am still standing and doing well. We'll be sad to see Tara's mother leave on Wednesday because she has been a huge help to us taking care of Sophie, cleaning, and cooking. Tonight she made a Peruvian dish that has a beef, tomato, olive, and egg filling inside of mashed potatoes and then put into the frying pan. It was delicious but I overate as usual.

Shots Hurt!

Well, my white blood cell count has continued to fall according to my bloodwork this morning. That means I have to be vigilant for signs of infection and stay away from sick people and crowds. The doctor told me to keep taking the antibiotic he prescribed and I also got a shot. I go back to urgent care tomorrow and Sunday for more shots. Monday they will check my blood again and see if we need to continue the treatment. The medicine is called Neupogen and its purpose is to stimulate my bone marrow to produce more white blood cells. The nurse said it could make my bones ache, especially the longer bones like my arms and legs. We'll know soon enough how I react though I took some preventative tylenol just in case. I haven't had a shot to inject medicine for a while and it was pretty uncomfortable. They stuck me in the back of my upper arm and I know why my baby cries for her shots - they aren't fun. I'll keep you posted but for now it looks like hibernation this weekend away from the germy world. I don't mind though because I've been very tired so it gives me an excuse to lounge about with a blanket as Minnesota returns to colder temperatures. This round of chemo has been a little tougher. I waited too long to start my anti-nausea medicine but it seems to have stabilized now so I can eat more and have my appetite back.

Round 2

Sorry that I haven't made any posts for a while but there hasn't been much to say. The last few days have been wonderful. I felt more normal during the last several days than I have for a few months.

The chemotherapy went okay today. I feel a little more worn out but that could be due to an overindulgence last night. Carrie Jeffrey made gyoza for us and I overate. It tasted so good and I knew that after today I'd be a bit queasy. Last night I woke up with some indigestion from overeating. It could have been amplified by my last chemotherapy but I brought it on myself. As a result I started the day with less sleep.

I won't go into detail this time since I wrote about most of the details two weeks ago. I did ask a few questions though that yielded some interesting information. The first chemo drug is the red one that changes my urine different colors. The nurse has to sit a push it in over 15 minutes using a syringe instead of and IV drip. I asked why and she told me that she has to check every so often to see if she can draw blood back out. Apparently if this drug touches skin, it will eat it away so they want to make sure it is going into my vein instead of under my skin. Nice thought that it is going inside of my body.

The doctor ordered some blood work before the chemo started and my white blood cell count is low. The minimum level is 4000 or more and I only had 2200 white blood cells in the sample. The doctor prescribed an antibitoic for me to take to help guard against infection. I go back on Friday to have my levels checked again. If it is still low I will have to get an injection to help my marrow begin producing more whit blood cells. For now I have to stay away from sick people and large crowds. I'll let you know Friday what happens. Enjoy the picture of my sweet baby coming to visit me.

Doing Well

I am pretty surprised about how well the last week has gone. I was nervous after having my chemotherapy infusion last Tuesday but for the first few days I felt the same. If I hadn't been hooked up to an IV for half the day I wouldn't have known anything had happened. Thursday afternoon I started taking the anti-nausea pills, not because I had a terribly upset stomach but because I could tell that things weren't feeling normal anymore and the nurse said to stay on top of it as soon as it starts to creep up on me. The pills seem to have worked well and I was even able to enjoy lunch at Token BBQ yesterday. I am a little tired these days but no more than my worst days of cancer symptoms + baby duty. The one side effect that could become worse in the next few days is one that I'll spare you the details of other than to say, "Prunes." I just ate 3 and we'll see how they work. We may be off to the store tomorrow to get some prune juice and dried apricots. Guess my breakfast menu will have to include a bit of oatmeal as well.

It was wonderful to be in church today. I gain so much strength from partaking the sacrament, feeling the spirit, and fellowshipping with my ward family. I hope that as the chemicals build up in my system that I will still be able to make it to sacrament meeting at the very least. Thanks to all of my ward members who included me in their fast and prayers. I truly do feel that strength.

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.

Surgery Consultation

We got a call this morning that the surgeon who will do the biopsy had an opening in his schedule today. So instead of waiting until April 4th, we got to talk with the surgeon today, a week early. He did a quick ultrasound in the exam room to confirm what he saw in my CT scans. His conclusion was that the safest, best way to get a sample would be to make an incision between my 2nd and 3rd ribs just to the left of my sternum. He will spread the fibers of my pectoral muscle apart to get right at "my mass" for a lack of a better description. It will be an outpatient procedure but thankfully they'll put me out for it so I won't remember anything. I am sure it will be a bit sore though but that's what pain meds are for, right. Strangely enough I have never taken narcotic pain medication. I got a prescription for some after my wisdom teeth removal but never used them because the ibuprofen worked just fine. The surgery is scheduled for Friday, April 8th, and the results should only take a day or so but that would probably push it to the beginning of the following week. We'll see what it turns out to be. It seems like everything has been moving so fast with appointments being moved up earlier and the doctors working to get things done as soon as possible. I am not sure how we'll handle this waiting time but I suspect we'll continue to be calm and at peace thanks to the support of our family and friends. Thanks Rita and Johanna for watching Sophie over the last week so Tara could be at the appointments with me.

A quick look back

Let me briefly explain how all of this came about. Ever since the Christmas holiday I have not felt myself. It is possible that it may go back farther but may have been hidden by the tiredness that comes from having an infant in the house. I was having cycles of fevers, frequent night sweats, and just always felt fatigued. Tara finally convinced me to see a doctor. They started with some blood work which showed that there was inflammation in my system and I was very slightly anemic. A week and a half later they did some more bloodwork that confirmed the inflammation somewhere in my system and so we went ahead with a CT scan. The scan showed a mass and so my family doctor referred me to an oncologist. He ordered another scan but this one was a PET/CT scan, meaning that they shot me up with radioactive sugar. The mass glowed on the scan indicating it was an area of high metabolic activity. It was hard not to be able to see Sophie for 24 hours while the radioactivity decayed, because to be in the same room with her means that she wants me to hold her. It made me realize that this process is going to be tough because I won't be able to play with my baby like I used to. The next step is a biopsy to get a definitive diagnosis of what this mass is.

Here We Go

First, I must thank my wife for setting up this blog for me. She has been my biggest supporter and with her help I know I can get through this ordeal. It seems like we've been living this trial for a long time now but it has only been 10 days since I first learned of a mass in my mediastinal space. For those of you who don't know your medical terminology, there was actually a cluster of several masses right under my breastbone and ribs. It is in the space around the heart, lungs, and breathing tube. The doctor strongly suspects that this will turn out to be Hodgkin's lymphoma, a type of lymphatic cancer. The masses that showed up in my chest are likely enlarged lymph nodes containing cancerous cells. During these last 10 days, I've felt (among many emotions) shock, uncertainty, calm, and concern for my friends and family. Tara and I feel that we have been prepared to deal with this trial and know that with the support of our wonderful family and friends we'll be just fine. Thank you all for your thoughts and prayers. I'll post updates here so you know where we are at in the diagnosis and treatment process.