I’m in the hospital with my second round of inpatient infusions. Pretty uneventful. I’ve got the routine down, and the schedule is similar to last time. That means that the process starts around noon, and continues until about 3 in the morning. Early drugs, pre-hydration, the actual chemo agents, more other drugs and more hydration. Lots of trips to the bathroom to make sure I’m flushing the bad stuff out quickly.
The only different side effect this time is a flush/rash on my face. The doctor thinks it is a reaction to the steroids, which are part of the “other drugs” I get. We’ll watch it, but otherwise nothing serious.
I guess coincidentally, but perhaps because I have the time and my mind is on cancer, I came across this story of a 17 year old boy who was diagnosed with osteosarcoma – the bone cancer version of my sarcoma. He went through some surgeries and chemotherapy, but then last year, had a routine CT scan and discovered metastases in his pelvis and lungs. That last part is very much like me. He was told he had 6-12 months to live and that his treatment options were pretty much exhausted. So the story and the song, Clouds, are focused on his remaining life.
He’s a neat kid and I encourage you to watch the mini-documentary that I’ll link to down below. He may focus too much on cars and talk about marriage to his high school girl friend, but I admire his 17 year old spirit. And I watch his family and friends both embrace that spirit and dread the day it is gone. I think it is his sister who talks about the moment she fears is walking out of the hospital once he has died and knowing she’ll never see him again. That hit me hard. Zach died late last year.
I’m not good at figuring out or paying attention to song lyrics, but I like his song, Clouds. I’m going to link to the version of the song where his family and friends are lip synching. It’s more touching. I’ve downloaded it to iTunes so I can listen offline.
We’re aways away from the heavy talk and thinking times. We have the excitement about the pending arrival of our first grandchild, and making plans to get back to the lake in late June, and the fun family gatherings that ensue. Every now and then something comes up at dinner conversation that makes Betsy and me pause or sniff, and of course sitting here in a hospital brings more out. Betsy and I agree that looking ahead a year from now seems as distant as the moon. A lot depends on whether this treatment slows the growth of the tumors, and if it does, how quickly they will rebound after treatment ends.
So, with the exception of spirit/strength lessons from some 17 year old kid on YouTube, all the logistics and excitement about summer plans keep my spirits up these days.
Here is the mini-documentary about Zach. I’m just going to include the link. I have trouble embedding YT videos in my blog.
Here is a link to Clouds:
Packed red blood cells
Blood doped…boosted…performance enhancing… That’s me today. I spent the day, as an outpatient, at RRMC up in Medford, being everything but an inpatient. I received two units of packed red blood cells, to boost my own supply of them which is shrinking. My hemoglobin and related counts weren’t dangerous, and we expect them to dip for awhile after chemotherapy, but my oncologist wanted to stop a trend that wasn’t correcting itself. To my friends Melanie and Ben – don’t tell Mac that I’m engaging in what I think is the actual doping activity that snagged Lance Armstrong. I want to be able to look him in the eye next time we meet.
We figured it would be a number of hours, but not 8 hours which was the clock in to clock out duration. I was there long enough to order a hospital lunch, have a one-pump buddy, and some of the nurses I had met during my longer stay came by to say, “Hi.” I’m supposed to have more energy, and maybe less shortness of breath. I think that’s already the case, but we’ll see tomorrow for sure.
This past week has been spent mostly dealing with the sometime minor side-effects: dry mouth and sores in the mouth, and a runny nose.
The cells lining the mouth are part of the fast growing variety which chemo agents attack. I’ve been pretty good about keep my mouth hydrated and they recommend a daily, non-alcohol based mouthwash, but those precautions didn’t work this week. My mouth has been pretty sore, and I’ve sprouted some thrush which is a fungal infection that Betsy remembers either giving to or getting it from Philip while she was nursing. The first level treatment is this prescription generically called Miracle Mouthwash. Depending on the doctor and the patient’s condition it will have some lidocaine, some Maalox or similar to coat the mouth, some nystatin to fight the thrush, and somtimes benadryl. We’ll hope it all clears reasonably soon. Meanwhile my food portions are soft and small. Ice cream that has started to melt fits the bill admirably.
And then the runny nose. They never told us about this in all the literature. So, a little review… we all have little hairs in our nose that trap floating particles in the air as we inhale. And I guess there is a small but steady flow of nasal/sinous fluid that mixes with the hair and the particles and makes, well, snot. Only I don’t have any nose hairs at the moment. (This could be calamitous but I can’t imagine why, except for Richard Thalheimer who always sold those stainless steel nose hair trimmers. Maybe an increase in adult cancer was one of the causes of the business failure of The Sharper Image.) So, back to me… with no hairs, the particles go in my lungs I guess or maybe land on the lining. And the fluid is still flowing. So the consequence is that I’m going through more handkerchiefs, and don’t look too closely at my sleeves.
See all the interesting things you learn in this blog?
Next step on the journey is returning to the hospital on Monday, May 20 for another round of the two-headed agents.
On Facebook the other day I introduced my “three pump buddy.” It’s central to my 4 day hospital stay here at Rogue Regional Medical Center.
My chemotherapy regimen includes a drug that has some potentially nasty side effects, including on the bladder, and the doctors prefer giving the drug in the hospital where I can have lots of fluid pumped through that bladder and I can be monitored closely.
From my Facebook post:
Meet my triple pump buddy. We’re inseparable from mid-afternoon, through the night, then get a break from each other in the morning. She has a battery so I can wander or find the bathroom with her. Biggest problem…she snores.
More specifically I get hooked up to my buddy in the middle of the afternoon. I have an IV port implanted just under my right collar bone, and all this week a port connection is dangling from it, and it is a relative snap for the nurse to attach the machine to the port. No needles in the arm or back of the hand as is more likely on a hospital visit. They can also do blood draws from it, avoiding the need to find a vein in my arm.
But once hooked up – I stay that way for 12-15 hours, through the administration of the extra hydration, the anti-nausea, anti-bladder infection drugs, the chemo agents, and more hydration. Every trip to the bathroom, or journey down the hall, or walking over to pickup the iPad, or order dinner on the room phone, or move from bed to chair, requires me to bring her along. She’s on nice, broad rolling wheels, and though she is usually plugged in, she can be unplugged and work off batteries for an hour or so. When I get up in the middle of the night (many times, thanks to the hydration) I have to unplug her, wheel her in front of me into the bathroom, set her aside but within catheter reach, etc. And she does snore – there’s a fairly loud pumping sound, different for each drug and its infusion rate, etc. I’m lucky to be able to sleep through that – it becomes white noise.
None of this “leashed” experience is horrible, just something annoying added to the mix. And I’ve had an interesting set of similar partners along the way. In the hospital for the first surgeries last year, I had the obligatory IV placed in the back of my hand. The catheter gets taped securely, so there’s no chance of pulling it out or dislodging it. And as with my triple pump buddy the IV was on a rolling stand so I wasn’t stuck lying in bed. But it was constraining, even to the point of scratching my nose or pulling up the bedsheets.
Then, off and on for almost three months I had this little guy as a constant companion. The Wound Vac had an airtight dressing over the wound on my back where the original tumor was removed. The wound was slow to heal and the negative pressure helped draw healing tissue to the site and also helped adhere the skin and muscles layers that had gotten separated. I had a little satchel with the Vac to sling over my shoulder, with a tube running to the wound site. The battery lasted 12-15 hours and then needed an overnight charge. So at night, I plugged the satchel into an outlet near my bed, and would have to unplug it and carry everything into the bathroom. Even into the shower – hanging the satchel outside the shower door, draping the tubing over the door while I stood in the shower. That connection was 24×7, and there were plenty of times when it felt like a ball and chain – particularly connected to a dressing which couldn’t be compromised.
So, a summary… it’s no fun being hooked up to a machine, though it’s certainly better to have the machine be portable. Each time I resolve to be as independent as possible with the machine constraints, but it is also a noticeable relief when I am disconnected. I don’t want to think about a future with an oxygen tank, though my oncologist says that the lung lesions aren’t likely to have that kind of impact.
Oh, and the update… I’m actually feeling pretty well here during this hospital stay. As with the outpatient chemo infusions, they gave me several hits of anti-nausea drugs and some steroids – which help hold off symptoms for about 3 days. So I’m still under their umbrella, but still relieved that the additional drug hasn’t done spectacularly bad things. With all the infusing during the night I’m not getting solid sleep, so naps are even nicer. All in all, this new journey has been more than OK.
Meet my triple pump buddy. We’re inseparable from mid-afternoon, through the night, then get a break from each other in the morning. She has a battery so I can wander or find the bathroom with her. Biggest problem…she snores.
Photo thanks to Iwan Gabovitch on Flickr
I promised more of an update once we had a chance to meet with the sarcoma specialist up at OHSU in Portland, and our local oncologist in Medford. Both appointments were good. Good discussion of options, making some more plans, and trying to make sense out of the various chest CT scans I’ve had over the last several months.
The CT scans show perhaps modest success with the lesions in my lungs. Maybe some are smaller; maybe some are about the same size; and no new guests. One larger growth, just outside my lower right lung, continues to grow, and on the same side, but near the top of the lung – perhaps just outside in the plura – has grown quite a bit. We’re basically measuring from a baseline scan done near the end of February, just before the start of chemotherapy, and then another done last week. There was an extra scan thrown in, in late March, and sometimes the radiologists and the oncologists got a bit confused when making before and after comparisons with that extra report thrown in.
So, Dr. Ryan at OHSU recommends we return to the first plan, which is chemotherapy with two agents – the doxorubicin that I’ve been receiving and ifosfamide (i – FOS – fa – mide). Dr. Ryan had found the European study that showed pretty conclusively that using both agents did not extend life expectancy more than just using doxorubicin alone. So I asked him what had changed in his thinking. He explained that my modest success with doxorubicin, coupled with my generally good tolerance of the treatment meant I was figuratively in a sub-segment of the target population, and perhaps it was worth trying both now. But as before he had to admit that there isn’t solid research ground to stand on here. Just his judgement and our wishes.
Our discussion with Dr. Dibb today in Medford ran roughly the same course. He had spoken with Dr. Ryan and compared notes, and he saw some value in trying the additional drug, if we were willing. There was some question of whether we might use radiation to attack the two most active tumors, but that means stopping any chemo, and his preference is not to let up on the systemic treatment now. We shared with him our desire to get to a pause in terms of treatments by late June, so that we could go to the Adirondacks and spend up to 3 months there. He and Dr. Ryan support that kind of plan. They’re good, compassionate doctors.
So, we’re throwing some more chips in the pot. The two agent treatment needs to be done on an inpatient basis. This Monday morning I’ll check myself into Rogue Regional Medical Center, the largest of the two hospitals up the road in Medford. The ifosfamide in particular gets metered into me in doses over some time, and it has side effects that need to be monitored throughout the day – hence the hospital location. I stay about 4 days, depending on the various lab tests and my condition.
So, it’s a bit of a gamble – risk of more/different side effects and the time in the hospital against the possibility of stronger impact on the lesions, which in turn might extend life expectancy. When I mentioned to our University Seminar office coordinator that one of the unlikely but possible side effects is hallucinations, she said she’d be on the lookout for an email from me, warning about the attack of the snakes or some such. I appreciate her vigilance.
The silver lining was that the infusion I was to get today is now put off until the hospital visit. So, both Betsy and I have a relatively unencumbered long weekend – though she has two Siskiyou Singers concerts to which she can devote her full energies now.
I’ll probably report at some point from the hospital or if I’m seeing snakes, Betsy may do the reporting.
Have a Nice Day
A friend wrote me a quick note the other day, saying she was thinking of me and hoping I wasn’t having too difficult a time with all of this. I thought about her kind concern and my almost knee jerk reaction, that, “Thanks, I’m doing fine.”
So, what are days as a cancer patient like? Well, clearly that answer depends a lot on the individual. I have read and seen and known enough examples of people for whom the journey is painful, frustrating, depressing, and just plain shitty. I am incredibly lucky to be able to say that those adjectives rarely apply to me, and never all at once.
So, my answer is a little more vague, and I’m going to use this post to try and sort through how I feel. Thank you for helping me with this. When I have more than a greeting-on-the-walkway conversation with someone who asks, I’ll tell them that I has this kind of low grade “ugh”, sort of like the feeling you get when a cold is coming on. That’s probably the lower energy levels caused by a low red blood cell count. And, of course, I’m hairless, though that is mostly a conversation piece and nothing that affects how I feel. I’ve been lucky to have avoided the common problems of nausea (no excuse to get an Oregon Medical Marijuana card) and my appetite is pretty good, though a bit smaller around the edges.
On one plane of consciousness (don’t worry – I won’t get all Zen or Buddhist on you) my days are pretty normal. I enjoy being with Betsy and hanging out at home and being part of the University community, and Rotary, and Ashland generally. We celebrate sunny days and hunker down on rainy ones. I see plenty of friends and colleagues at school, and have regular interactions, and need to solve problems, and I grade assignments in my online class and all the rest. I can generally save up energy so we can go see a play or a concert. Some days the schedule gets overly full, and my energy wanes and I either bail out or become something of a zombie. But wait – isn’t that pretty much like any of our days? That’s right. It’s pretty normal (except for the daily naps or bailing out part.) I interact with a wide group of people and that often is fun and fulfilling. This is particularly true of students I see on campus. I run into some I know and their excitement (or worry or whatever) is pretty rooted in the here and now. My conversation with them is not affected by my health status. And that is as it should be.
So, one answer to my friend who worries about me, “It’s not a big deal. Life goes on and is still full of interesting twists and turns and daily curlicues.”
But, of course there is that other plane of consciousness. Or to pick another metaphor, a parallel track – dealing with cancer. Mostly it is filled with logistics stuff. Pick up the CT scan report at the hospital. Make sure OHSU has all the records in preparation for our visit next week. Clear the calendar for the next infusion day and after. Try to figure out what will happen after this chemotherapy regime is finished in early June. Sometimes reality sets in, and I have to remind someone I’m probably not going to be on campus in the fall, and so can’t join a committee, or commit to a new initiative. I bought a new watch and briefly asked myself, “why?” but then, “why not?” So, this other plane or track is much more complicated, and it’s there some of the time. It’s too soon to be deeply philosophical about facing death, but to my friends I just need to say that “I’m fine – just at 3/4 speed and sometimes with a little shadow or cloud.”
Sugary Drink - photo by http://www.flickr.com/photos/bike/
For my Spring Term Microeconomics students – this topic comes up in our course in early May when we learn about market failures.
A former student, Tyler Voorhies, wrote on my Facebook timeline, talking about New York’s Mayor Bloomberg seeking to ban the sale of large size, sugar-containing sodas at restaurants in the City. Tyler wrote,
I’m a fan of it, obesity is one of the many issues plaguing the healthcare market and soda contributes directly to it. It’s the Pigovian tax on negative externalities, in a sense – which I think fits very well here. Most people seem to have a negative knee-jerk reaction to this idea, but i think their are some strong economic arguments to be made in support of this.
Here’s the economic argument in favor of some kind of ban. Tyler mentions negative externalities. In a regular, competitive market the consumer weighs the cost of a purchase, like a super-size soda, against his personal benefits. The seller of the soda does the same – comparing the cost of production against the price. The market price is at equilibrium and there is an efficient quantity demanded which equals the quantity sold. However, sometimes there are costs incurred by people other than the consumer and the seller. In the case of high calorie drinks, public health experts assert (and can demonstrate with reputable studies) that consumption of these drinks is linked to increases in obesity in the population and that increasing obesity leads to increasing healthcare costs. In numerous ways the costs of obesity are paid by society, through higher health insurance premiums, increasing uncompensated ER visits for diabetic emergencies and more. So our innocent market for soda understates the social costs. The equilibrium price and quantity are no longer efficient since they do not recognize these external costs. Those are negative externalities. This is a market failure and a possible rationale for government intervention.
Now, what to do about it. Tyler noted that a New York court struck down the proposed ban on the sale of super-sized sodas. Maybe a Pigovian tax would work. Yes – in theory, that would be an even better approach. Readers – see the Pigovian Tax category in the list of categories on the left for more information. How might it work here? There could be a tax on sugar or calories in drinks or food served in eateries. This tax brings the external cost of unhealthy eating into the purchase decision. Consumers pay a bit more and in theory reduce their consumption to some extent. And government collects tax revenue that could be used to offset the social costs of obesity (or could be used in public education campaigns similar to no smoking efforts.) Pigovian taxes are designed to provide incentives and change behavior, but they preserve the public’s right to make their own consumption decisions. Even right of center economists, like Harvard’s N. Gregory Mankiw, favor Pigovian taxes as an alternative to direct government regulation like Bloomberg’s proposed ban.
So, hat tip to Tyler for remembering his old Econ teacher and for giving me the opportunity to bring a current event into this blog.
“Your appetite seems pretty good,” Betsy said. “Yes, it is,” I replied. Only Betsy wasn’t talking to me; she was talking to our dog. Moral of the story – it’s not always about me.
This little episode added to some reflection I have been doing lately. Of necessity I have to be pretty self-aware – keeping track of symptoms or changes in normal “systems.” It’s almost a form of narcissism. The oncology folks have a laundry list of things to be on the lookout for. Top of that list is anything suggesting an infection or leading up to one. The chemotherapy lowers my white blood cell count and lowers my resistance, so if some bug does invade, the response is often hospitalization and IV antibiotics. And there is a cycle with each chemo treatment. The first three days are schizophrenic – overall the body is tired from the recent assault, but the infusion includes a bunch of bracers, including steroids, and they add some zip to the tired body. Then that concentrated dose wears off and we go through the first week of feeling more tired, wondering if the nausea will appear, and just getting through the day. Then there is the social quarantine period (10-14 days after the infusion), where I’m supposed to be extra careful about contacts with others. And finally a week where the world looks a bit brighter, though hair may be falling out. These are all things that I notice about myself and need to keep track of.
All this self-awareness, while necessary I guess, isn’t good for the soul. Or at least it doesn’t feel so good to me. Friends call and ask how I’m doing and I can give them a litany, and usually I think they genuinely want to know. But there’s an odd cadence to those conversations, and I’d be happier knowing how things are with them. I’m more glued to Facebook these days (I know – a bad sign probably) but I love seeing the little stories and photos and experiences my friends are going through. There are young, school age kids in our neighborhood who are waking up with spring, and riding their bikes, building forts, and modifying their swing. Those are pretty therapeutic events to watch. OK – that’s about as much introspection as I can muster. On to the regular report.
Starting week 3 of the second chemo cycle. So feeling a bit better. The last two weeks have been dominated by an intractable cough. Some of it may have been due to spring and allergies. Some of the cough triggers may be coming from a chemo-weakened sphincter muscle in the esophagus – the one that holds back acid reflux. The reflux can trigger more coughing. And then I caught an old-fashioned cold. Among all three reasons, the cough was pretty vexing – poor sleep, annoying to anyone close to me, and just another tiring exercise. The doctors and nurses tried a number of things, and sent me for X-ray (to make sure I wasn’t headed to pneumonia) and even a CT scan (to check something I never was quite clear on.) PepcidAC helps, along with typical cough meds. You probably know the old line – a cold will go away in 7 days, but if you see a doctor it only takes a week! It will be nice to be cough free. Otherwise I’m in that week 3 not feeling so bad part of the cycle. Round three comes on April 4.
Oh, and that extra CT scan. Some of the lesions are a bit smaller than the baseline before chemo started, but one at least is larger. The pleural effusion (fluid just outside the lung) on my lower right side is reduced somewhat. We haven’t actually talked to a doctor about these results – I just went to the hospital and got a copy of the report. The original plan was to have the third round of chemo, then a CT scan as a midway check on whether the treatment is effective. We’ll see if that is still the plan when I go in next Thursday. We also have a return visit scheduled with the sarcoma specialist up in Portland, after that midway CT. It just seems right to get his take on progress and prognosis. I’m not sure what our decision options will be at that point. We’ll face those and report on those as they confront us.
Looking at the subject line of this update I couldn’t help but remember Little Anthony and the Imperials, “Tears on My Pillow”. For a stroll down memory lane, hear the song here. No tears here but I woke up yesterday and remarked to Betsy that my scalp was tingling and hurt a bit. Sure enough, I was losing a little bit of hair. The chemo agent attacks fast growing cells, including hair follicles.
My friendly barber-with-a-plan gave me a noticeably shorter haircut. Not a shave – he believes in gradually introducing me and my acquaintances to less hair. I brought out a seldom used golf cap for the chilly day, and put on a stocking style cap at home in the late afternoon when I often feel a bit chilled. I’m told to expect hair on my pillow most mornings.
And that is the most exciting thing that has happened in the two weeks since I last wrote. Since the first chemo treatment the fatigue has settled in like a guest who has over-stayed his welcome. It’s not debilitating – just present. I’ve been able to teach my classes, and attend plays with Betsy, and hold some office hours on campus to deal with the little stream of administrative details for my job. But I try to get home for lunch and a nap most days, and generally take it easy. I haven’t had any nausea and my taste buds and appetite are fine. My mouth gets dry and needs a drink or something to suck on, and there’s a dry cough that could either be part of the asthma season, or perhaps a nodule in my lung settling against a cough trigger. Betsy and I are zealots about hand sanitizer, and it was fun to read an article in The New Yorker recently about the development of Purell. My white blood cell count was supposed to be at its nadir this past week. All in all, I feel very fortunate that the side effects have been pretty modest so far.
A friend treated me to a visit to a massage therapist whose practice includes patients on chemo, and that was nice and I’ll probably repeat it. I, in turn gave a couple of sessions with the same lady to Betsy, who deserves the gentle attention as much as anybody.
If any of you read the Time issue devoted to hospital costs and pricing, this might be of interest. With a huge stack of insurance statements (my state insurance is very good) we’ve become used to big bills, sharp discounts for insurance claims and all that. Just as an example, my first chemo session, with lab work, a visit with the physician assistant, and the actual infusion and drugs came to $2,368. That actually didn’t seem so high. Doxorubicin is an old, generic war horse, so it only cost $180. Some of the anti-nausea drugs were more expensive than that. However the next day I came back for an injection of Neulasta – which is supposed to bolster the production of white blood cells in the bone marrow. It was a separate visit to a nurse, and an injection in a vein. Cost of the drug itself: $5,000. Five thousand dollars for one injection/treatment.
Friends, students, colleagues, administrators, and Rotarians have all been very supportive and flexible. The notes and phone calls, and Betsy’s invitations to tea, are all a lovely result of a caring group of friends. And I thank you all for that.
Originally sent February 23
It’s been a little over a week since my last update, and with any luck there will be fewer updates as we coast from one event to another. As I look over this message it seems full of mostly techie and process stuff, which is where my interest lies. And following all of the details is, I must admit, a nice distraction from some of the transcendental issues.
After we returned from seeing the expert at OHSU, we confirmed with our local oncologist that a one drug chemotherapy regimen was the way to go. Our local doctor was a bit chagrined to learn of the recent European study from Dr. Ryan at OHSU, but felt better when he found out at the results had been presented at a conference but not yet published. I kind of like my doctor feeling some self-imposed pressure to keep up with the literature.
So, the new plan started a multi-step process. First was an echocardiogram, to make sure my heart could tolerate the chemo drug. Doxorubicin is hard on the heart, and in fact there is a lifetime limit on the number of doses the heart can take. That means after these 5-6 cycles there won’t be any coming back to the same drug. My heart is fine.
Then this past Monday I had an IV-catheter port implanted. The process was pretty long though the actual procedure short. It involved anesthesia, recovery room, and all the rest, but by late in the afternoon most of the anesthesia fog had melted away and I was just a bit tender. A small plastic/metal disk is implanted under the skin up near my collar bone. From the disk, still under the skin, a catheter is threaded into the superior vena cava, which is a large vein near the neck, headed back to the heart. The disk has a self-sealing silicon bubble, so a needle can be stuck through the skin, into the bubble, and now there is a direct shot to a major vein. The chemo infusion folks can draw blood from it for testing just before the infusion, and then it is the main transport of the IV fluids and drugs during the infusion. It’s very handy, not painful, and avoids the possibility of the doxorubicin leaking into surrounding tissues, where it could do some damage.
Tuesday we had another chest CT scan, to serve as a baseline just prior to treatment. The report from that scan showed no more pulmonary nodules, but growth in several, and a bit of fluid building up in one place just outside my lungs. I still don’t have much in the way of symptoms from these nodules, though every now and then if I lie/sleep in one position one or two of them press on something and it feels a bit like a minor muscle pull. I’m coughing a bit, but the docs don’t think that is related, and it is the season where a bit of asthma can flare up.
Wednesday was education day. We met with a nurse at the Oncology center, watched a video and spent quite awhile going through what I was going to receive, and mostly dealing with possible side effects. The nurse was good, thorough, and friendly, and we met in a comfortable education room (this whole facility is pretty nice – oncological groups aren’t hurting for funds…) The topic was sobering, since she was obliged to go through all the possible experiences and ways to deal with the symptoms. Those of you on Facebook will have seen the picture of the swag bag we got to take home after collecting all the materials.
3 vials of Doxorubicin (Adriamycin)
Thursday was infusion day – actually the afternoon. I had arranged for a sub for my afternoon econ class, so we were in the clear. It started with collecting blood via the IV port, then a confirmation visit with the Oncology Physician Assistant, then back to the infusion room. This infusion center is the only one in Southern Oregon I believe, so is pretty big. Probably at least 20 lounger chairs, each equipped with IV pumps and a personal TV on a swinging arm. There is a special, sterile, mixing room where the nurses prepare the potion once the patient arrives and is cleared to receive. Rumor has it that two Halloweens ago the mixing room nurses had cauldrons of dry ice and dressed as witches, under their sterile gowns. One nurse handles 4-5 patients, though by my mid-afternoon session I was her only patient. Lots of TLC – warm blankets, offers of juice, and even a barista out in the entrance lobby. We’re encouraged to eat and drink before arriving and to bring snacks if some particular food appeals to us. And like with most IV pumps with battery backup the patient can unplug the unit and roll it around to use the rest room or visit the little table of snacks. Family members can come and go to visit. I had a slew of anti-nausea drugs infused first. Then the actual doxorubicin (trade name Adriamycin) was in three huge syringes, as red as cherry koolaid. These were hand injected via the port, rather than using the pump. They are injected slowly, in the middle of a saline drip, to guard against leaks or backups. I was there a little over three hours from first draw to the end of the infusion.
Betsy reported that I dozed off a couple of times on the way home, but I felt good enough to have dinner, and went to bed early. Since then – now a bit of 48 hours later – I feel a bit like a flu or cold is coming on, but no real nausea, and my appetite is good. Some of the infusion anti-nausea drugs are still supposed to be working, so we’ll see in a day or two how that holds up. All the bone marrow blood construction is hampered so lower red cells will mean fatigue, lower white cells will mean reduced resistance to infections, and lower platelets means susceptible to bleeding or bruising. The infection risk is the one they take most seriously. The risk is greatest 10-14 days out, and we’re under strict instructions to wash hands, use hand sanitizer, and report a temperature over 100.5. Meanwhile I don’t need to live like a hermit – just practice safe socializing. And in fact we enjoyed going to the symphony last night. And moderate exercise is good if I feel up to it.
So we’ll see how things progress in the next couple of weeks. Hair loss comes 2-3 weeks later. I have one or two hats in mind for that day. The chemo cycle is 3 weeks, and after two or three treatments they’ll do another CT scan to see if there is any effect on the nodules.
Betsy has said to others and I’ll affirm, that the sweetest side effect of this disease and treatment is the kindness of friends, acquaintances, and strangers. We hardly know what to do with the offers of support, but we figure the opportunities will present themselves as we progress further. Thank you all for your love and concern.
….Doug and Betsy