Sunday, September 29, 2013

The Flying, Fickle Finger of Fate

It's been a weird few days.

I mentioned before that Wonderful Wife and I have been enjoying the pleasant fall weather by getting out for longer and longer walks to build my stamina. On Thursday we went to our favorite place: Mass Audubon's Ipswich River Sanctuary. I had in mind a walk along a longer trail that we had only done once before. I felt plenty strong enough to do it. I mapped it just now and it is just under three miles.

I felt fine during the walk/hike. I was feeling a little tired by the time we got back to the car. But soon after we got home I felt completely exhausted. Painfully exhausted, in fact, all afternoon and evening.

Friday I woke up still pretty exhausted. I spent the entire day resting.

Every night for the past several weeks my sleep has been interrupted many times per night by drainage from my sinus infection. I finished the most recent course of antibiotics on Friday. I was expecting at least a temporary decrease in symptoms, but Friday night I had the opposite. The drainage started making its way toward my lungs and causing a deeper cough.

Not a good sign.

I managed to make it all the way through treatment without aspirating any mucous and now it's going to get into my lungs?

Yesterday I felt really horrible all day. It seemed clear that I had a cold or flu. The prospect of feeling miserable for several days through a cold or flu was really depressing. Especially given that I was expecting to feel better as the sinus infection at least decreased.

Then in the afternoon and evening I developed a fever. It got to 102 at one point. I was curled up in a ball. I am so tired of feeling crappy.

I dread the nights anyway these days because of the crappy sleep, but I was really dreading last night with a fever and cough and body aches.

I took some ibuprofen and tussin (loosens the mucous) before bed and, surprisingly, had a "normal" night by recent standards. I still woke up several times to get rid of mucous, but I didn't feel especially bad and I went back to sleep every time. I even slept until 8am, which is later than I've been able to sleep lately.

Today I feel tired and weak, but the body aches and fever are gone. Mucous production is way up, though.

Very weird. I never know what my body is going to do next.

I started the day with some oatmeal but it tasted very bad due to the sinus discharge. So I'm back to tube feeding for a day or two. I got in very few calories yesterday but I'm trying to get back on target today.

Wednesday, September 25, 2013

Another Piece of Red Left My Atlas Today

The title comes from an old Boomtown Rats song. It refers to the collapse of the British Empire. The disappearance of more pink cells from the spreadsheet of my lab results reminded me of the song.

As of today, my white cell counts are all back in normal range! I have a functioning immune system again!

That means soon I'll probably get off my last remaining drugs. I'm currently taking Flucanazole to prevent thrush. Thrush is an opportunistic fungal infection of the mouth that occurs when one's immune system is compromised. I've had it several times during and after treatment.

My rebuilding immune system should also help finally get rid of the sinus infection.

My only remaining blood abnormality is anemia. Apparently that will take a while longer - it takes longer for the bone marrow to produce red cells and for them to mature. I can try to eat more iron but Nurse Practitioner Kate says it probably won't make that much difference. My blood iron levels are healthy already.

The three numbers in the lab results that are still pink that are most pertinent are HCT (hematocrit: the percentage of blood volume that is red cells), Hgb (hemoglobin: the stuff that carries oxygen) and RBC (red blood cell count).

I also currently have excessive monocytes (a type of white blood cell). That is probably due to the sinus infection.

Another value still out of range is RDW: red cell distribution width. Mine is high, meaning the variation in size across my red blood cells is higher than normal. My guess is this is a reflection of the fact that I have a lot of immature (small) red blood cells.

In other news...

I have had a couple of very good days yesterday and today. During my visits today with the nutritionist and nurse practitioner it hit home that I really have made a ton of progress. The nutritionist was very impressed with the variety and volume of what I've been eating. Nurse Practitioner Kate was pleased with all the drugs I'm no longer on.

After my appointments I was hungry. We went to the Dana Farber cafeteria and I had my first meal away from home since June. I had some cream soup and a yogurt smoothie. It felt like quite the milestone to me.

And it's connected to another milestone: today I will get all of my 2000 calorie target through my mouth. I only used the feeding tube to get in extra fluids today.

Perhaps there is light at the end of this tunnel!

Monday, September 23, 2013

Finding a Rhythm

Another week, a new plateau. I guess progress does happen after all!

I got tired of feeling so weak and decided to really focus on getting in sufficient calories: for the past week I've made sure to get in at least 2000 calories per day. Both the nutrition and the focus have contributed to an improvement in my mood. It's nice to not feel quite so fatigued. I've even done a few chores!

I've also been eating at least a couple of "meals" per day. That's in quotes because it's usually a single dish, whereas a real meal usually has a side or two. I'm getting about 1/3 to 1/2 of my calories by mouth now. I eat french toast, poached eggs, toast, soup. I'll try just about anything these days, but with a lot of things one bite is enough because of taste.

The focus on calories is having a positive effect on my weight. My normal weight is about 175 pounds. I got down to 150 a couple of weeks ago. Now I'm back up to 155.

Wonderful Wife's birthday was last week; I was very excited to try some chocolate cake mashed up with ice cream (to make it wet) but I was sorely disappointed that it didn't taste good. Chocolate in general is one flavor that is quite off.

As I've mentioned before, eating is a bit time consuming because I have to wash every bite down with water. Also, things taste normal when I first put them in my mouth but the taste changes quickly to one that is less pleasant. That seems like it will make a complete transition to eating by mouth slow. At the rate I eat now, I'd be eating all day!

One factor in that taste issue might be the damned never-ending sinus infection. I'm about half way through my fifth course of antibiotics now to try to finally kill the damned thing. The latest antibiotic is Cefdinir (previous rounds were Azythromycin, Bactrim, Clarithromycin and Levoquin). My immune system is also recovering so perhaps I can finally be rid of the thing. It has been the bane of my existence.

Two weeks ago the sinus infection suddenly started making life worse.

The post-nasal drip hits that "bottom rung" spot in my throat that, when it gets mucous on it, triggers coughing fits. I can limit the fits now with sips of water and relaxation but not until I've had several dry coughs that make my throat very sore. That never fails to happen a short while after I lie in bed, just as I'm about to fall asleep.

Two weeks ago the sinus infection also started draining in the middle of the night, waking me up every hour or two needing to get rid of the mucous so I can breathe. It's not just a drip but a stream and it lasts for several hours from midnight or 1:00 AM until 5:00 or 6:00. No position, such as sleeping upright, helps.

I've come to dread night time because I know I'm going to have two coughing fits while trying to get to sleep and then have a sleep-interrupted night.

My hope is that if I finally get rid of the sinus infection both the "bottom rung" issue and the drainage will disappear and I will finally start getting better sleep. That would do wonders for my mood.

Most days are above average lately. Today is an especially good one. However, there are still bad days mixed in. Yesterday, after a terrible night's sleep, I woke up angry and was seriously low all day long. But last night I got a better-then-average night's sleep and today I'm in a great mood.

Last week I was experiencing dizziness whenever I stood up from sitting. We call it a "head rush". When I was at the ENT last Wednesday I mentioned it to him and he had his nurse perform an "orthostatic blood pressure test". She measured my blood pressure and pulse lying down, then sitting, then standing. When I stood up my blood pressure plunged and my pulse shot up. I failed, meaning I was dehydrated ("hypovolemic": low blood volume). Anemia can also contribute.

It's a challenge to try to address the dehydration by just drinking more. I am drinking regularly through my mouth these days, but I can't just drink a whole glass of water like I normally would (swallowing that many times in a row is still painful). Also, a lot of the nutrition I'm getting is still in liquid form, either feeding through my tube or things like Instant Breakfast or soup. The point is I often feel full of liquid and I'm not inclined to add more.

On Saturday I got 1.5 liters of IV hydration at Dana Farber. Since our family support came to an end a week ago, we took The Progreny with us. Progeny the Younger is fascinated with things medical and she watched closely as the nurse placed the IV and also later when she removed it.

I've found that if I time it carefully I can get in liquids between meals. The past few days I've been getting in a couple of half-liter bottles of Gatorade (via my feeding tube) per day and the dizziness is much improved.

So, an inventory of outstanding issues:

  • The sinus infection. I may be seeing some improvement from the latest antibiotic.
  • Poor sleep. Definitely caused by the sinus infection.
  • The painful dry cough caused by the "bottom rung". Perhaps related to the sinus infection (hopefully)
  • Still taking four doses of laxative every day while waiting for bowel function to return to normal.
  • Weird sense of taste - things taste fine when I first put them in my mouth but turn a little south soon thereafter. Could also be related to sinus infection.
  • Not enough, and not wet enough, saliva.

I see Doctor Chemo again in two days and get updated blood work. We'll see of my immune system is continuing to rebuild.

We're having spectacular weather at the moment. It was in the 70s all last week and will be this week, too. Wonderful Wife and I have been making a point to get out for a long walk every morning after The Progeny go to school. That's also contributing to an improvement in my mood. We've been exploring all different parts of the charming small city we live in. Today we ventured farther afield to the Grand Wenham Canal.


Wednesday, September 18, 2013


On Sunday morning the last of our family support team, Wonderful Wife's parents, departed. I was very sad to see them go.

We had such wonderful support from family during this experience. First Big Sister visited for a couple of weeks, then Little Sister for three weeks, then Los Parentes for a bit and finally Los Inlaws. We had non-stop coverage from Big Sister's arrival on July 9 until Los Inlaws left on September 15.

Los Inlaws stayed a little longer than expected because the universe had to throw another curve ball at us.

Several weeks ago Wonderful Wife went in for a routine mammogram and it came up suspicious. The follow-up a few days later with ultrasound did not clear up the suspicion, and a biopsy was scheduled for a week and a half later. That biopsy was last week. The next day we learned that the results were negative - all clear. Los Inlaws stayed until that very unwelcome cloud was removed.


I am so grateful for all the time and expense my family spent to come and help take care of me and support the family through this process. Their help was very much needed. The extra emotional support really helped me.

I don't feel like these words come close to expressing my gratitude, but they'll have to do.

Monday, September 16, 2013

The Long Road

I'm sorry it's been so long since I've posted. I think about it every day but just haven't had the energy.

I continue to learn, over and over, just how slow this recovery is going to be. A lot of time it feels like I'm just treading water. That said, I did have some significant progress in the past week.

In my last post I mentioned that we met with Doctor Rad on the 6th and she told me that the mucous can be a problem off and on for several months. That day I decided I needed to stop waiting for perfect conditions before I tried eating.

The thrush improved a few days later and I started trying to eat more. I've eaten one meal and a snack or two every day since. I started with cereals that I would let get soggy. I've also tried sliced bananas in milk (or in combination with cereal). Later this week I progressed to poached eggs on well-buttered toast. I've also had chicken noodle soup and yogurt. Today I had a whole bowl of lentil soup. I also tried ice cream - it was alright.

Eating is a chore. The food tastes okay, especially at first, but my saliva is thick so whatever food I put in my mouth turns pasty fairly quickly. After chewing I have to rinse each bite down with a swig of water. It takes a long time. It's hard to figure out things to eat that are appetizing and have the right characteristics: mostly that it is very wet.

There is not much joy in eating at the moment. My tastes buds and my saliva production are just two more things that will improve slowly over many months. One or both of them might never fully recover.

I really want to eat! I want to get rid of the feeding tube. My favorite sleeping position is on my stomach and I haven't been able to sleep that way for months. I can't wait to have that ability back. I'm probably a few weeks away from tube removal. Obviously, I need to be getting all of my nutritional needs through my mouth for that to happen.

So eating more is kind of big news. The other news is that I've been completely off the opioid pain medications for several days now. My mucositis is mostly healed. That tongue sore is still there but much less painful now, and slowly healing. That's also contributing to more eating.

I've been getting off lots of medications, and in fact the only ones I'm on regularly now are the Flucanozole to keep the thrush at bay, and the laxatives to counter the opioid-induced constipation. Now that I'm off the opioids, the constipation should begin to improve and I should be able to get off of the laxatives. I see the gastroenterologist later this week and we can evaluate.

One random observation: the skin on my neck and cheeks is baby soft. It was all slowly destroyed by the radiation and is now all new skin. Wonderful Wife likes the feel of it. So do I! But I don't recommend radiation treatment as a way to get softer skin. My beard is still not growing back - just a little peach fuzz.

I still have the threat of gagging coughing attacks from mucous hanging in my throat, although I have learned how to suppress them with relaxation and sips of water. The suppressed fits still cause me to break out in a sweat and take several minutes to calm. And they piss me off.

Our old friend the sinus infection is still with me. It got knocked down significantly by the fourth round of antibiotics that ended a week and a half ago, but of course is still not completely resolved. It is my biggest complaint at the moment. Most nights, around midnight or 1:00 AM, it starts draining into my mouth and throat. It's not a drip, it's a stream. And it lasts the rest of the night, making it hard to fall asleep and waking me every hour or so. It's seriously interrupting my sleep, which makes me angry because I need that sleep for recovery. Doctor Chemo did not want to start me on another antibiotic right away (as of the 11th) but we called today to tell her we really need to do something about it. Another reason she wanted to try to avoid another course of antibiotics is...

On the 11th I had new blood tests and my white counts are recovering slightly. My neutrophils (a type of white blood cell that fights infection) were even back in the low end of the normal range, although my overall white cell counts are still below normal range (but close, and improving). My red blood cell counts and hemoglobin are also below normal range, meaning I'm anemic.

The low counts of both types of blood cells contribute to the constant fatigue. My bone marrow was hammered by the chemotherapy and is struggling to produce new blood cells for me.

I'll have new blood tests next week on the 25th. Meanwhile I'm trying to get as much iron and other nutrients as I can.

In general I am still quite fatigued. I'm not sure what was going on a few weeks ago when I had three days in a row of feeling energetic. I haven't felt that way since. I get dizzy when I stand up. If I do something too strenuous during the day or don't rest enough, I feel very poorly by bedtime. Almost too uncomfortable to fall asleep.

I'm also physically weak. My legs, which used to be strong and firm from years of cycling, look skinny and flabby. I climb stairs slowly. My arms feel weak. It's going to take a lot of work to regain that strength, although once I can actually get back on my bike and begin that process I will enjoy it.

I don't have the concentration or motivation to accomplish anything during the day (thus the lack of blog posts). One would think that all this down time would be great for completing big projects but I just don't have any energy. That's mentally tough for me because I'm usually a pretty busy guy.

This whole recovery is mentally tough for me. It's excruciatingly slow. I did visit the Dana Farber psychiatrist and I have no signs of clinical depression, but I do feel depressed in the colloquial meaning of the word - quite often. Perhaps discouraged is a better word. I am so tired of being tired.

To counter that I am trying to get out of the house more. I need to rinse my mouth and spit much less often now - I can even make it all the way through a brief visit to a store, for example. That makes it easier to get out in public.

This past weekend we went to my favorite place, the Ipswich River Audubon Sanctuary in Topsfield, and walked our usual route to the Rockery and through the swamp to the Old Stone Bridge. It made me cry to be there again. It didn't recharge me as much as I thought it might, but it was still nice to be there.

Yesterday was one of the last expected warm weekend days of the season so we went to the beach in the afternoon. I just sat still in a beach chair and watched The Progeny play in the sand and water. It felt good to sit in the sun and the breeze and watch the boats.

When I get discouraged with the pace, Wonderful Wife reminds me to look at where I am relative to a month ago. That helps a little. I have made good progress since then and life is much better.

But still such a long way to go.

Saturday, September 7, 2013

Back in the Slow Lane

Well, it turns out maybe those four or five really good days I had last week were not the norm. At least not yet. Since Tuesday of this week, when I last wrote, I've been riding a few rows further back in the bus.

For one thing, the mucous came back. On a couple of days it's been especially voluminous and/or thick - sometimes at the same time. We met with Doctor Rad yesterday and she told me that some patients complain of mucous for up to three months after treatment. I guess I was only hearing the optimistic end of things earlier when I thought I heard that it was usually better after a month. This week the mucous has been accompanied by a very unpleasant taste, too.

Thursday marked four weeks since the last day of treatment.

I was probably too optimistic about when I might return to work, too, due to those anomalous good days. Most days this week I have felt pretty exhausted all day. Yesterday just three hours at Dana Farber (albeit with a lot of waiting in uncomfortable waiting room chairs) completely wiped me out. I was laid out on the sofa from 1:30 PM, when we got home, until bed time.

It's so hard to predict how I'm going to feel when. We have a camping trip next weekend that was planned six months ago - we definitely won't be going on that (or at least I won't be going). Some friends long ago invited us to their cottage on the cape the following weekend and that's looking pretty iffy, too. Both would require sleeping in our camper van. It's comfortable enough when one is feeling normal, but it could make for a very unpleasant night (and trip) if I'm having some kind of issue. Not to mention that tube feeding takes time and it's important to try to stick to a schedule to make sure I get enough calories. It's much easier to maintain that routine at home. We'll see.

You may remember my excitement a couple of weeks go when I took a few bites of food. That was quickly derailed by yet another bout of thrush (due to my low white blood cell counts) and also the recently returned mucous and bad taste.

I have tried a few foods since. The other night Wonderful Wife made my mother's chili recipe and it looked and smelled so good I had to try some. I even chewed a couple of beans and a small piece of ground beef. It tasted reasonably good and the texture was OK. The mechanical motion of chewing aggravated the mucositis sore on the side of my tongue, though. I'm not really going to be able to chew until that is completely gone.

The mucositis has been getting a lot better. I take my opioid painkiller in two forms: a patch plus liquid I take through my tube if the patch isn't enough. Until Wednesday I was consistently doing both but over Thursday and Friday I didn't take any of the liquid and my tongue felt like it was finally healing. Yesterday evening I had a fair bit of pain and took the liquid, but today it is lessened again.

Hard to believe that a little 1 inch by 1/4 inch patch of inflammation on my tongue can be so painful that it's causing me to take narcotic painkillers. At least the new laxative regimen I started a couple of weeks ago has alleviated the opioid induced constipation.

I'm starting to really want to eat for an additional reason: tube feeding is boring and slow. I crave tasting a variety of foods again, and I also look forward to snacking.

The other side effect I have to deal with is my hearing. It is significantly suppressed. Hearing loss, usually temporary but sometimes permanent, is a side effect of the chemotherapy I received. Mine could also be partially due to the persistent sinus infections I have had throughout this experience.

Regardless of the cause, the hearing loss makes me feel disconnected from the world. It's very difficult to track a conversation in a room with noise or with multiple conversations going on. I can't hear some sounds at all (for example, electronic beeps), but others feel amplified - like the sound of a metal pan hitting the hard countertop or glasses clinking. When someone is cleaning up the kitchen or loading or unloading the dishwasher it feels like that's all I can hear.

The current sinus infection (number four if you're keeping track - or maybe they have all been the same one waxing and waning) is threatening to resolve. I just finished a two-week course of Levoquin on Thursday. That's the fourth course of antibiotics. I still have some evidence of infection (yellow blobs in the mucous) but they are fewer. Also, the antibiotic continues to work for a few days after completion of the course. I'll keep a much closer eye on it this time and deal with it at the first sign that it is waxing again. The inability to resolve it is also related to my compromised immune system.

Doctor Rad was a little concerned about depression. It is apparently pretty common for people in this phase of "survivorship" to experience depression or even temporary Post-Traumatic Stress Disorder (PTSD). Dana Farber has psychiatrists on staff just for that reason. I made an appointment to see one next week. I don't feel dangerously depressed, but I do have to admit that I am a little depressed by the slow and uneven pace of recovery. In a "two steps forward one step back" world I don't deal so well with the "one step back" parts. Patience is not one of my strongest virtues.

So I'm just ticking slowly along at the moment. I take a lot of naps.

Monday, September 2, 2013

Whoa There Big Fella

I was on a roll there for a few days. Today Mister Fatigue has come home to roost.

I didn't get up until 9:00 this morning. During the day I've taken three fairly long naps and I still feel tired. It's 9:00 PM now and I'm ready to go to bed.

I've also only been getting in about 1500 calories per day. I need to make an effort to bump that up over 2000.

That's all for tonight. I'm tired.

Sunday, September 1, 2013

Here Are My Digits

The patient gateway that Dana Farber uses conveniently makes available all of my lab results along with a bunch of other information. For a while I have been wanting to extract that data and show the changes in my blood measurements over time.

Yesterday Big Sister reminded me that the reason my sinus infection is resolving so slowly and I have thrush again is that I am still immune compromised. The high dose Cisplatin did serious damage to my bone marrow and it will take time to rebuild and start producing white blood cells again. White blood cells are the effectors of the immune system.

That conversation prompted me to go look at the numbers and sure enough, my white counts are pretty low. I have to remember that and be careful to wash my hands after being in public, etc. It also means I shouldn't attempt to ride the subway to work any time soon.

This morning I spent a couple of hours extracting the data and putting it in a spreadsheet, which you can see here. The pink color indicates a measurement is outside the normal range. The normal range is shown in the 2nd and 3rd columns.

I've also added a "Labs" link to the right side navigation bar that you can see if you are viewing the blog in a full-sized browser. I'll try to keep the spreadsheet up to date.