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."