Week Five – Recovering!

It’s been awhile since I updated the blog. I saw my oncologist on Tuesday, November 4. First, they drew my blood and checked me out. My numbers were all normal. In fact, my ANC had already risen to over 3000! We set up a schedule to come in for blood work every 3 months and get an MRI every 6 for follow up. These will become less frequent over time.

You know, I kind of miss it all. Kind of like my personal Stockholm Syndrome, I guess. I got into the routine of chemo and being sick, and now I’m trying to get back into the routine of feeling well and working and trying to exercise a bit. Even a two-block walk tuckers me out. I get fatigued every day. But I’m getting stronger.

2014-11-14 16.30.01

Still bald (except that sad goatee)

My hair is not growing back yet, though. I get stubble, and some hair grows on my neck in weird places, but it’s not all growing back yet. My litmus test will be the little bit of remaining white and red hairs in my “goatee,” if you can call it that. When that hair begins to become noticeably longer and fuller, then I’ll let the rest come in. For now, I shave my whole head and face once a week to keep from getting these weird patches of hair.

Thank you to everyone who read the blog, emailed me, and supported me and my family throughout this ordeal! We couldn’t have done it without you.

Advertisements
Standard

“Why did this happen to me? Is God punishing me?” and about miraculous healings

It’s Thursday, October 30, 2014. As I wrote in the last full blog entry, my Absolute Neutrophil Count (ANC) had fallen to 200 over the weekend and I was put on Ciprofloxacin to fight the sinusitis I was developing and to prevent further infection. I guess Cipro is my immune system for awhile.

I was ordered to stay home except for doctor’s visits, and to avoid fresh foods, etc. I had a blood draw scheduled for Monday, so I called my oncologist’s assistant (he’s a physician’s assistant, or PA), a great guy and always easy to get ahold of. He told me to wait a day or two for the blood draw, but that I should definitely get one to see if my ANC was going up. He said that the Cipro can lower my ANC even further. All the literature I can find online says it will take a few weeks for the ANC to return to a normal number, but I guess acute neutropenia (really low ANC) should last less than a week. I guess we’ll see if the Cipro lowers it.

Monday, I thought I was going to get a blood test and then maybe go to work, then I had to change my plans to just the blood test. And then it looked like I would remain in quarantine. Baba Jackie still came over and I did some work while she played with Anastasia. It was a great help. Before doing my work, I said my morning prayers and anointed myself with myrrh from the weeping icons in Taylor, PA. A deacon friend sent me a cotton ball soaked with myrrh from the icons. Many have reported healing and other miracles after being anointed with the myrrh. I’ve seen and venerated these icons when they were brought to Johnstown last spring; Anastasia and I took a road trip to see them. Since getting this particular cotton ball with myrrh and a small paper icon of one of the streaming icons, I have anointed myself on the head and wounds a few times. They told me to do it daily, but I forget to more than I remember to. This particular morning, I was in my office getting ready to do work and saw the package with the cotton ball and thought, “well, my ANC is low, I should anoint myself.” I prayed that my ANC quickly return to normal. I anointed myself on the forehead with the sign of the Cross, then went about my day.

I will be the first to admit I’m not the kind of person who gets moved easily by seemingly miraculous events. I’m a natural skeptic. As a devout Orthodox Christian, I do believe that miracles happen and that weeping icons are real and that folks really do experience miraculous healings. However, in my case, I have a very curable cancer, a good outlook, a decent prayer life, and a lot of faith, so I didn’t rush off to find a miracle cure. I would let the doctors do their jobs. The way I see it Theologically, humanity is in a fallen state and as such we are subject to physical and mental illness, decline, and death. We have also been given very complex brains to help us fix our problems. We have developed writing and computers, and all manner of great instruments for collecting and interpreting data, and we have applied these to the treatment of disease.

Life is good. It is worth living. It is worth fighting for. But there is no guarantee we will win the fight for ourselves or our loved ones. We have to be prepared, as best we can, for losing the fight and for dying. I am trying to prepare myself as best I can.

What do I do? I pray. But I will admit that I don’t pray every morning. I try to. I have a prayer book that I use to read some morning prayers, followed by reading the epistle and Gospel reading for the day. I try to think about the lessons taught, but more often my mind wanders or I’m in a hurry and I finish up quickly. This is part of the spiritual struggle. There are days when I open up another book I have and say those morning prayers, which last three times longer, and I am in a very prayerful place. Such is the spiritual life. In the wisdom of the Church, the prayers and liturgies are always there even when we’re not all there. The habit of a prayer rule, even a simple one like I have these days, means that some days I’m all in and some days I’m not, but I stick to the rule as best I can and it bears spiritual fruit. Just keep at it and don’t despair if you forget sometimes.

Also, before starting chemo, I visited with my spiritual father (it took me years to find one) and confessed my sins. I wanted to be as spiritually prepared as I could be for the chemo. And, you might remember, I also served vespers and the Divine Liturgy with Bishop Gregory, a truly great blessing.

What about miraculous healings? This is one of those hard aspects of faith to discuss. The Church fathers, and especially the modern holy elders like Elder Paisios of the Holy Mountain (Mount Athos, Greece) discuss physical and mental illness quite a lot. They are the hot spiritual topics of our time. Despair and depression come along with these illnesses. I am well aware.

It is easy to say to ourselves, “What did I do to deserve this illness?” or “Why is God punishing me?” We want to try to make sense of it, and if we are believers, we might want to think that God is punishing us for our sins or something. But the holy elders and saints of the Church teach something quite different. God is not giving us illness. Illness is the result of our fallen state. But rather He is allowing us to endure illness. This is for our spiritual edification. He does not allow us anything more than we can endure.

This sounds like crazy talk and spiritual mumbo-jumbo. But you see, for the Orthodox Christian, spiritual growth can indeed be found in times of illness, pain, distress, and sadness. We can see the frailty of our bodies and refocus on the immortality of our souls. Our bodies are often the way we experience life, but we can take a step back and experience life spiritually. Our bodies are good, they come from God, as does all of creation, which is also good. But our bodies are only half of who we are as persons. Our souls are the other half. We need to care for our souls as much as we do our bodies, and a physical or mental illness can help break us from thinking only of our bodies, and turn us towards tending to our souls.

So why are some people seemingly miraculously cured, while others are not? The Church would say that it comes down to what will be of most benefit to our souls: enduring physical suffering might allow the believer to cultivate a deeper spiritual life, understanding that God is allowing this for their spiritual benefit; being healed miraculously, be it from an anointing or other means, might allow another believer to see the hand of God at work in his or her healing, and so deepen his or her spiritual life. Both paths lead to the same end, but for one the miraculous healing might go unnoticed or unappreciated, or un-believed; for the other, the struggle with illness might lead to despair and despondency, or spiritual death.

For me? Well, like I said, I’m not big into miraculous things. I don’t rush out to see the bleeding statue or weeping icon or whatever it may be. But I will go see those miraculous icons, for example, which have been declared true by the Church. I attended a service and venerated the Wonderworking Hawaiian Iveron icon of the Mother of God when it came to Pittsburgh. Incidentally, when this icon went to Taylor, PA, the icons there began to weep. So they have a spiritual connection to this Hawaiian icon, which itself is a paper copy of a weeping icon from Montreal, which is a copy of an icon in the Iveron monastery on Mt. Athos. The type of icon is known as an icon of the Theotokos (the mother of God, Mary) “she who shows the way,” and in the icon, she is holding the Christ Child (as she almost always does in icons), and she is pointing to Him. How fitting that such an icon bring healing! The whole point of the streaming icon and miraculous healing it to bring us closer to God, not to astonish and amaze or be a spectacle.

The Holy Theotokos showing the way.

The Holy Theotokos showing the way.

I went on Tuesday to get my blood drawn, wearing my mask, fearful of infection. My blood test results were posted online that night. My ANC was 1000.

I called the oncologist’s PA on Wednesday morning to ask if this was normal—to go from 200 to 1000 in three days. He said it can happen. He was vague. All the literature I’ve read says that, yes, it can happen—“over time” and “in 3-4 weeks.” He said that when the ANC starts to go up, it really goes up.

So, did a miracle take place? Did the Holy Theotokos intercede for me and my ANC go from 200 to 1000 in a day because of the anointing with holy myrrh? This is possible, and I don’t discount it. Could it be the Cipro? I did a search of studies and found that in one study of over 4000 people on Cipro, one person reported an increase in ANC. Remember, the PA said the Cipro could cause my ANC to go down. Well, as an academic, I’m going to say in the cases of both the anointing and of the Cipro that I can prove correlation, but not causation. In the end, it is a great blessing to have this myrrh and smell its rosy myrrh fragrance every day, and be reminded that God allows some of us to be healed miraculously. I believe, in my case, that I was given the “endure the illness” option. Well, I kind of opted for it myself, but I prayed throughout that I would be given the strength to endure. And I was. And I also think that there was a touch of the miraculous involved.

For those who are asking “Why me?” perhaps your illness is gift from God. Perhaps you should look at it from this perspective, that God is allowing you this for some reason. Maybe your son or daughter returns to church after many years absent. Maybe your husband or wife is now forced to spend more time with family and away from work, and thus your family life becomes stronger. Perhaps you lose the ability to walk and have to rely on others, when you really don’t like showing weakness, and your pride is softened. We do not know what spiritual fruits our illnesses will bear, but if we consider that our illness will bear some spiritual fruit if we allow it to, then we will see much fruit borne.

At any rate, Glory to God for all things!

Standard

My poor beard! (with a short update.)

Wednesday, October 29 and Thursday, October 30, 2014.

My beard has been in bad shape lately. I shaved my head, but decided to let the beard do its thing. The hair is really falling out. All except for the white hair on my chin, and some red hair on my upper lip.

Saw the oncologist on Wednesday because my … stump… hurts. He said it’s actually NOT the stump, as that is way up inside. What I thought was the stump is actually scar tissue or something. It hurts because it’s still healing from the surgery. If it still hurts in a few months, then come back to see him. OK, then. Settles the whole nut stump thing.

So, onto the beard pics:

Monday:

Full shot of the sad beard.

Full shot of the sad beard.

Up close of the chin area.

Up close of the chin area. Spotty beard at best.

Thursday:

Sadder beard.

Sadder beard.

Then the big shave:

I shaved my head again, and my face, but let the white hair goatee go. First goatee since the early 2000s! Let's see how long she'll last.

I shaved my head again, and my face, but let the white hair goatee go. First goatee since the early 2000s! Let’s see how long she’ll last.

My dwindling beard breaks my heart. Alison wonders if it will all come back in white, since it’s the white hairs that are holding on tight. That might be pretty cool!

Standard

Chemo – Day Twenty

Today, Saturday, October 25, 2014, is technically day twenty of chemo, out of twenty-one. However, I am not slated to get any more chemotherapy. Tomorrow is technically the last day of my BEP cycle!

Alison got a cold early in the week and I’ve been working to avoid catching it. Anastasia, too, has had a runny nose, but we don’t know if it’s illness or teething. Her two-year molars are due.

Friday, I woke up with a sore throat and feeling a bit down and nauseous. I took a Zofran. It all went away pretty quickly with some water, food, and coffee. But by mid-afternoon, I was really run down. I tried to nap but was never able to fall asleep. I drank some coffee. Eating dinner helped, as did a Compazine help with more nausea. My nose has been running all day—actually it started running on Wednesday or Thursday, but I attributed this to either the chemo or maybe a developing seasonal allergy. I don’t have any allergies that I know of, but have an allergy test scheduled in a few weeks. We’ll see if I have any after all.

So Alison sits me down on Friday night and tells me I should call Father and say I won’t be at liturgy Sunday, and call the 24-hour on-call number at Shadyside Hospital about my possible illness. Because I don’t have much of an immune system, any infection or illness will not present with the normal symptoms. Snot is the body fighting infection. Phlegm is the body fighting infection. So is sneezing and coughing. They say if my temperature gets to 100.5° F, then I have to call. Pretty low temp, but it shows my body is doing something against any infection. Also, I should call if I have the chills or shakes (I did have them Monday night following the bleomycin, but they went right away by Tuesday), a rash, redness or tenderness, difficulty with urination or defecation, mouth sores, or a new or persistent cough, nasal congestion, sinus drainage, sore throat, or ear pain. I have all of the last five symptoms. So I call the on-call number after a leisurely breakfast Saturday morning.

The nurse will call us in fifteen minutes. An hour later, we call again. The nurse calls right back this time, and I explain my issues. She tells me she’s going to call the Oncology Fellow on call at Shadyside Hospital, but with my ANC so low (600) last time I had blood work, and with the probability that it is now LOWER because of the chemo I got Monday, they’ll probably want me to start antibiotics. I hadn’t considered that my ANC would be lower! Oh. Not cool.

The nurse called back a few minutes later and tells us the Fellow wants me to check into the Emergency Room at Shadyside Hospital so they can run all kinds of tests. It seems this might be more serious than I imagined.

Alison gets a last minute babysitter to come and watch Anastasia during her nap time and we head to the hospital around 1pm or so. We has some really great friends! The Emergency Dept. has a metal detector. The entrance protocols are pretty strict. I find this strange. I mean, I can waltz right into the hospital proper with a weapon and no one will be any wiser. I guess they get some violence in the Emergency Dept., enough to warrant tight security. Anyway, they’re not busy and I get right back and am seen by the doctor right away. She orders blood work, urine work, CT of my sinuses, and a chest x-ray. All in all, it takes about three hours, but at first the time goes by quickly because they’re talking to us, taking blood, wheeling me to the x-ray, talking, taking me to CT. But all the tests are done by 3pm and we then just have to wait for the results. I read a bit, then nod off.

Who's the cancer patient with the low anc? Is it that obvious?

Who’s the cancer patient with the low anc? Is it that obvious?

They come back in around 4pm with good news! I don’t have a huge infection. However, there is some stuff building up in my sinuses and I need to take Cipro for seven days. We have lots of it, if you recall from blog#1, because I was originally prescribed six weeks of this anthrax-killer when the doctor thought I had prostatitis.

My Absolute Neutrophil Count, by the way, has fallen to 200! Alison asked, “Can it go to zero?” Yes, it can. But hopefully mine won’t, and should be on the upswing in fact. Doctor’s orders are to avoid people for the next week and to NOT go to work.

Alison and Anastasia go off to a wedding, I stay home and order pizza and wings. Since I’m in quarantine, I figure I can allow myself a few indulgences. I’m going to make my favorite crock pot country BBQ ribs tomorrow. I watch a movie. The girls come back late, around 10pm. We get the baby to bed, then head to bed ourselves. What an interesting day!

Standard

Week Three – Hair loss!

So, week three is pretty uneventful so far. I feel pretty good. I haven’t gotten sick, which is great.

I saw my PCP because I wanted to discuss a few things with her. I wore a mask to the office to try to avoid getting anything. I think it worked. I asked her about depression, she gave me a screening tool. I’m moderately depressed. She wants me to really pursue exercise to try to raise my mood, as studies show exercise is as good as drugs for treating depression. I am going to try. I need to get into better shape anyway, over all.

I also asked her to check out my, um… nut stump, for lack of a better term. It hurts. That is, the stump left from the amputation of the spermatic cord during the orchiectomy. I think “nut stump” is probably a rather vulgar term, but it adds levity to pretty much every conversation I can slip it into, so I’m going to trademark it here, but please feel free to use it if you have need. Anyway, you can see it and easily feel it through the scrotum. I’m pretty sure that’s not normal. She didn’t know, actually, because I’m her first TC case. She told me to make an appointment with the urologist, which I of course did.

I blogged about my beard and chest hair coming out here, so here’s a picture of me from Wednesday. You can see the hair on my chin, especially under my bottom lip, is getting pretty thin.

My beard is starting to fall out, especially in the "soul patch" area under my bottom lip.

My beard is starting to fall out, especially in the “soul patch” area under my bottom lip.

So, in poor Michael Bay fashion, I present a montage of my hair loss. It takes a montage.

It takes a montage. 1. My hair started falling out, so I took some tape and a lint roller to it. 2. After the lint roller. 3. After a shower when I scrubbed it real good.

It takes a montage. 1. My hair started falling out, so I took some tape and a lint roller to it. 2. After the lint roller. 3. After a shower when I scrubbed it real good.

Anastasia helped me clean my head with a lint roller.

Anastasia helped me clean my head with a lint roller.

I was basically going to have to buy two new lint rollers at the rate I was going, and we’re out of duct tape, or else I would have used that. I made the executive decision that the best way to deal with all these little falling out hairs, which are getting everywhere, was to shave the head with a razor. Contrary to the low ANC orders, but a man’s got to do what a man’s got to do. Plus, I get a regular shipment of nice clean razors from Harry’s, so I have plenty of good ones to use that I’m confident will not cut or nick my head.

Harry’s great razor blades did not, indeed, cut or nick my head:

Top of head after shaving it. I am now fully bald.

Top of head after shaving it. I am now fully bald.

I kept as much of the beard as I could. I look kind of cool, actually.

I kept as much of the beard as I could. I look kind of cool, actually.

I hope my beard doesn’t fall out! That’s what I’m really afraid of.

Well, until next time.

Standard

Chemo – Day 15

My last day of active treatment! My last shot of bleomycin! It is Monday, October 20, 2014.

I got up, showered, said my daily prayers, made breakfast, got the baby up, and was excited for my last treatment! Well, “excited” isn’t the word, exactly. But I’m excited to get it over with. In at 10:30am, should be out by noon, then meeting a friend who’s in town from VA for some lunch at Primanti Bros.!!!

Baba Jackie came over at 10am and I got ready and was out by 10:15. Couldn’t find parking and didn’t want to deal with the valet, or the $5 cost when it shouldn’t be more than two hours, so finally found a spot a few blocks away, across from good old Ritter’s, and put $2 in the meter. I ended up being 10 minutes late, though.

They took be back right away and got my BP and vitals. I lost 3lbs since last Monday. A sixth nurse attended to me today. Maybe the best one yet. She got me stuck and took blood with ease. She used a hot compress to get the vein on my left arm all happy before she got in there with the needle and IV.

I’m supposed to meet with my oncologist’s nurse (ON) today to discuss my aftercare. I want to know when I can get a flu shot and when I need to get blood drawn, and I want the script for the blood draw. Instead, I’m given an envelope with my name on it with the scripts. I ask the chemo nurse (CN) what I’m supposed to do, and she says, “Didn’t your doctor tell you?” No. He didn’t. In fact, I haven’t seen him or any of his team at all while in chemo. I would say that on four out of seven chemo days, my roommates’ doctors or someone from their team have checked in on them, but never anyone from mine. I told her (CN) my ears were blocked and ringing too. She (CN) was surprised my doctor didn’t know about this, too. I said I hadn’t seen anyone. She called the nurse (ON), who I actually had called last week and who was supposed to come see me this morning, only to be told by the nurse (CN) that the ON said I knew what to do (per our conversation last week, in which she (ON) told me she’d tell me in person today…), and that she (ON) was too busy to see me. Now, I’m a bit annoyed by this lack of personal attention. I suppose there’s nothing they can do for my ears and other side effects, but you’d think they would have checked in on me at least once. You can only advocate for yourself.

Over the weekend, the vein on my right arm that I had the IV in for the five straight days of E and P – the champ of a vein – turned all red and got hard. I’m having a delayed injection site reaction. Alison told me to ice it.

The line is to the right of the red hard vein.

The line is to the right of the red hard vein.

I asked my (CN) nurse about it and she said the EP chemo is super toxic and really causes a lot of damage in the vein. This vein is now pretty much useless for any kind of IV again, maybe like ever again. But it should heal in time. I take “in time” to mean many months’ time. It was itchy and painful, but that has subsided. Sometimes it still feels a bit itchy, but otherwise it’s just this hard red line. She told me to put a hot compress on it. Conflicting nurse opinions.

Another fun fact: my beard hair is coming out. Last night I was stroking my beard and found little hairs on my fingers. Then I gave a pull and got lots more. Usually it hurts to yank on my beard hairs, so I know this is it. The real deal. My top of head hair is doing ok though. Interesting.

After waiting for over an hour for my blood test results, I was starting to wonder what was going on. I see the nurse as I go for a bathroom break—remember, it’s important to flush the kidneys—and she tells me my Absolute Neutrophil Count (ANC) is low. It’s 600. It should be well over 1000. They’re waiting to hear what the oncologist has to say, whether I can get the bleo or not. This has been the great delay. Neutrophils are the parts of the white blood cells that fight infection. I am now at great risk of infection. This can happen around 7-10 days after starting treatment.

I text Alison this news, and my friend whom I’m supposed to lunch with. He’s going to the Stillers game tonight, and so I suggest we cancel. We reschedule for breakfast tomorrow. I’m now kind of disappointed. And more than a bit annoyed. I really wanted Primantis. And to be done with chemo.

Finally, around 1pm, they clear me for the bleo. I get it and finish up around 1:50pm or so. Alison comes to check up on me and make sure I get the right information.

The low ANC means I have Neutropenia, low Neutrophil count. To avoid getting an infection my body cannot now fight, I am to avoid: raw vegetables, raw fruit, undercooked meat, poultry, and fish, homemade pickles (not cool), anything not overcooked or not canned or frozen then cooked to hell, dippy eggs (sad face), raw cheeses, raw milk (ok, these aren’t normally a problem, but still), crowds of more than eight people, animal urine and feces and saliva; also, I should not handle my child’s feces, vomitus, or urine (or any diapers – a blessing in disguise? Actually I don’t mind changing diapers), concerts, bars, theatres, public spaces, hipsters.

My favorite line from my directions is: “If you are out and strangers are within 3 feet of you, you are in a crowd. Make sure you can step back or walk away if there are strangers around you.” I think I can go to church, but I will have to not give Communion and not ablute (clean) the chalices afterwards. Part of this is because we use wine to clean the chalice and I shouldn’t be drinking that. I will not get into the whole “Communion spreads/doesn’t spread disease” debate. I believe it does not. Studies have shown it does not. But I need to be careful nonetheless because people grab and kiss the chalice – really, giving Communion in the Orthodox Church is a contact sport, and how it will go is unpredictable at best. It is also a great blessing. But the Orthodox priest and deacon must be more vigilant than the best defensive line when handling the chalice. I will ask to be excused from these duties for a few weeks.

I am to avoid using a razor and cutting myself. After reading this, I ironically got a paper cut from the very paper urging me to avoid cuts.

I got home around 2:20pm and ate some lunch. I broke one of the rules, though, and ate a pork chop and veggies from last Tuesday—I shouldn’t eat anything older than two days. Oh well.

As the afternoon went on, I got progressively more fatigued. I started to feel like I was getting sick. Developed a headache. Took some Tylenol. Got nauseas and took a Zofran. Then today’s IV site started getting itchy.

By 7pm, I was dog tired and just feeling beat up. The last blast of bleo wasn’t going out without a bang, I suppose. I drank a half gallon more of water—they recommend two to three quarts per day. I shoot for a gallon if I can.

I watched a movie, relaxed, froze and shook, felt like I had the flu. Alison took the baby to the Goodwill for some clothes shopping, but now she is feeling ill, too.

By 10:30pm, we’re both in bed, and I’m trying not to accidentally get sick from her. If Alison has even a cold, and I get it, I can be in some serious trouble. Like extended stay in the hospital trouble.

The night is full of chemo dreams again. I’m up every few hours. The first time I got up, I thought for sure it was morning because I slept really hard. It was only 1am. That’s the worst part of chemo sleep. I just want to sleep the night through and get up. It’s not sweet dreams and restful sleep at all.

I finally get up around 8:30am, and the baby gets up a few minutes later. I want to take a quick shower because I’m taking her for a play date and meeting my VA friend for breakfast. I get her milk and the cat cries to go out on the back porch/catio. I don’t let him out because I want to shower and not leave the door wide open. The cat is mad. So mad that he marches upstairs and poops all over my pajamas. Then the baby poops. Remember, I am not to touch the feces of human or animal. Great. I pick up the poop and clean up the baby and scrub hard. I couldn’t find the gloves, either, so I just hope I don’t contract anything. I no longer like animals.

I get the baby to the babysitter and meet my friend at Pamela’s. I am forced to order scrambled eggs, which is, in my opinion, a waste of eggs. At least the potatoes are stellar. I am telling my friend about how my top hair is staying in but the beard is coming out. I give a pull on top and beard to show him. We laugh. I say, “See, it’s only there” and grab my chest hair and yank. Oh. I pulled out a handful. No pain. We start to laugh quite a lot. OK, so the chest hair is coming out, too. All my “man” hair is coming out, but not the top. So strange.

I just grabbed some chest hair to show you.

I just grabbed some chest hair to show you.

Otherwise, though, I’m feeling much better today. Maybe it’s the acetaminophen I took this morning. Maybe I’m just feeling better. I then go food shopping. By the time I’m done, I’m feeling the fatigue. Now I’m home and writing this blog and feeling pretty tired.

Standard

Week Two

Week two went by quickly. I had chemo on Monday (Day 8).

Tuesday, I felt pretty under the weather. My hearing was blocked and I had ringing – this lasted the entire week (and I feel it even as I type today, October 18, 2014). The brain fog that comes with chemo was pretty thick today, too. Alison worked and I spent the day at home with my parents and Anastasia. Someone had given Alison an old Flexible Flyer horse on springs, which my father and I put together. Anastasia LOVES it!

Giddy up, fall baby!

Giddy up, fall baby!

We ate all the leftovers so I grilled up pork chops and veggie mix. It felt good to do something. Alison and I went to Lowe’s to buy curtain rods for our new curtains, but we didn’t get a chance to hang them. I decided that I was done with the basement and would sleep on the couch tonight. I got down about 11pm or so. I couldn’t fall asleep. Finally, around 1am, I got up, made some tea, and set to work on my dissertation. I got a ton of work done and around 3am was finally feeling sleepy. Anastasia wasn’t falling asleep by the sounds of it, either, so I went up and offered to switch with Alison, but she wanted to stay in the baby’s room. It seemed like the only two sleeping were my parents! Which was good, because they had to drive the long drive back to OCMD in the morning. I gave in and went to the basement where I slept from about 4:30am until 8:30am.

I got up, made some oatmeal, and a pot of coffee for Alison and me. Alison watches another kid on Wednesdays, with a third kid and second mom visiting, so I knew it was going to be chaotic for me with my brain fog. I made plans to go do food shopping in the morning, and to return the curtain rods to Lowe’s because of course we bought the wrong color. We had coffee with kid two’s daddy, then with kid three’s mommy. My parents left. They were invaluable during this time, and I am truly grateful that they came to help. We couldn’t have done it without them. Thank you mom and dad! I love you!

The food shopping went fine and I ran into a few friends while out who were happy to see me. That was nice. I haven’t seen any friends in a while. I also ate lunch at McDonald’s, which turned out to be a terrible idea! Vague MickyD’s indigestion plagued me all day. yuck. My stomach was a mess all day. I think it was a combination of the brewed coffee and the McYuck. I’ve been trying to avoid brewed coffee because I think it agitates my stomach. I asked a nutritionist about it, and she said the oils produced in the brewing process are probably causing the stomach upset. I told her that Keurig coffee doesn’t seem to bother me, and she suggested that it’s because the coffee used in the Keurig is actually instant coffee (good old Sanka!), and doesn’t develop the same oils.

I cooked up a nice little dinner and we decided to go swimming as a family. The Oliver Bath House in South Side is open from the fall through the spring, when the other pools are closed, and your regular city pool pass gets you in. It turns out that few people take advantage of this great resource. We got there for open swim at 7:30pm and swam until about 8:15 or so, then went home. It was really great to get out of the house and swim. The water was very therapeutic for me, and I had a great time with my family. I’d recommend swimming during chemo. Wow. It cleared up my brain fog all together. I got to stretch my body. It was a great idea.

When we got home, we bathed the baby. Then we shaved my head as a family. I let Anastasia run the clippers over my head a few times. She thought it was silly. I did this because I had read that kids can get weirded out when your hair falls out, so if you have them help you shave it, they feel like they did it, and so it’s not all weird. There’s no guarantee my hair will indeed fall out, but I’ve been told it’s likely to happen. From what I’ve read of others’ accounts, it happens sometime around week three or so, around the time of the third shot of bleomycin. We shall see. Anyway, it was getting shaggy, and now it’s all fuzzy and cozy. And I have my great soft chemo hat to cover a chilly head, too!

Shaved head.

Shaved head.

I watched a movie in the basement and had a few beers. I made a pumpkin spice beer and wanted to try it. It was ok. Maybe next year I have to tweak the recipe a bit. I felt pretty happy and light-hearted going to bed, though I might have been a bit tipsy. I slept quite well, and in my own bed!

Thursday came with another pot of coffee and more intestinal distress. I think the oils theory might be spot on. I took Anastasia for a play date and came home to hang curtains. Hanging curtains took all day, mostly because I had to take it slow because I was fatigued and had the roiling stomach. By the time I finished around 4pm, I was wiped out and needed a nap. I got up from the nap around 5:15pm, then took a quick shower and dressed because I was going to go out to a fundraiser for the Pittsburgh Curling Club. My friend and curling teammate Erin picked me up. It was at the Wigle Whiskey Barrelhouse. We went to the distillery in the Strip District, only to figure out the event wasn’t there. I got on the internet and located this Barrelhouse, which is on the North Side. Pretty cool place. A warehouse full of barrels and a little bar area. Proceeds benefiting the PCC. I got an apple-infused dram that was very good and took two hours to drink. I socialized and ate lots of meatballs and tiny sandwiches. It was a blast! Afterwards, we wanted to stop in at a tailgate party for the Pitt/Virginia Tech game on the North Shore. Parking would be spotty at best. We found a spot half a block away on the street—it was meant to be. We said hi, had a beer, chatted, then headed home.

Here’s the heavy stuff. Alison told me that I’d been pretty down through the whole chemo, but had been in great spirits the past two nights after having a few beers. Maybe it was time to consider that the chemo, or other issues, were causing me depression. The alcohol was stimulating me, mostly because I was only having moderate amounts. Perhaps if I had drunk excessively, I would become more depressed. I don’t know. But the discussion prompted me to make an appointment with my PCP to discuss depression. I even took some online tests, just to see what they’d say, and came up with moderate depression on all of them. I’ve heard that cancer can cause depression in many people, and I think it’s possible it has in me. However, I think I’ve been fighting against it for a long time. One of my trusted friends even talked to me about it a few months ago—the day I got the diagnosis, actually. She suggested I consider talking to someone about it. I talked to a therapist last year, and it wasn’t helpful. Perhaps I should try seeing about medication. It took a few more months for my wife to convince me. If I am indeed suffering from depression, then I am willing to do what I have to do to fix my brain chemistry. Ailments of the body and mind are simply part of the human condition. Thankfully for us, we are clever creatures who have found many ways to fix and alleviate our genetically and environmentally caused physical and mental flaws. I am quite in favor of modern medicine these days.

Chemo hat!

Chemo hat!

On Friday, I opted to wake up when the baby woke up. She opted to not wake up early. I naturally woke up around 9am, feeling very refreshed from the first full night of sleep in almost two weeks. Today is the first day I am with the baby all by myself since starting chemo. However, Alison arranged for me to have some help from our friend Baba Jackie. Baba Jackie and Anastasia really love each other. She watches Anastasia when I work on Mondays, and they haven’t spent time together in a few weeks since my parents were in town. They read, color, play, sing songs, everything. I woke Anastasia up at 9:30am so she’d be ready to greet Baba Jackie. Once Jackie showed up, the two of them went off and played. Anastasia even waved me away! I went to my office and watched some videos for work and sent some work-related emails. I talked to some friends on the phone. Then Jackie left around 2pm and I finally got Anastasia down for a nap around 2:45pm or so. I tried to nap too, but wasn’t able to. Too much coffee. But today I had the Keurig kind, not brewed, and had absolutely NO stomach issues. So now I know for sure the brewed coffee is bad for me. I did more work, got the baby up from her nap, and we ate some pasta for dinner. Then we had an ice cream party and Skyped with my parents. Then we played. Then Alison got home from work and dinner with Aunt Mimi and we played a bit more. We played a bit later than we should have and didn’t get the baby down until 10:30pm, and she didn’t fall asleep until after 11pm! Yikes! She has an early morning Saturday, going to the Pittsburgh Symphony with her friends.

Standard