With everything going on in my life, there is apparently still something that will make me drop everything else and respond.
Hi there. I just read your page on mpip.org. I hope you are still NED!!! That is encourging. My 34 year old sister was just diagnosed in Sept and has just started her shots at home of interferon. She had her 3rd one last night. So far, shes not doing to well. I dont know if it doesnt get better I dont think she will be able to continue. She has 2 young boys too. I dont see how people get through it!! Do you think it is worth it?
Here’s my response:
It’s worth it only if you think living is worth it.
Interferon sucks, big time. No one can say what side effects the patient will encounter, and the list of possibilities is very long. If your sister is just starting, the physical effects are huge – hot/cold flashes, not being able to sleep, then passing out from exhaustion. Those subside, but although I was told I might be able to continue to work on interferon, I ended up taking disability and not working for a year. I got into a cycle were I slept for about 4 hours, got up and was reasonably fine for another 4 hours, then needed to sleep again. It’s hard to work on that kind of schedule, but I was able to cook dinner every night and take care of my daughter’s needs. I traveled by air and went to my sister’s wedding on interferon.
The first month is really hard because you take the massive doses. My liver showed bad results and I ended up cutting back. After the first month, I went 3 shots a week instead of five and things got better. Surprisingly, I found giving myself the shots in the belly was easier than the legs, but maybe that’s because I had more flab there! Your sister will definitely get over any fear of needles, but there where times when I looked at the full syringe and loathed what I was about to do. But I knew that if I put it off, the hold/cold symptoms would come back.
I ended up with depression, and got myself on meds to help that. Then I had to fight the side effects of the meds. I really missed wanting to get laid every now and again! I lost about 60 pounds over the course of the treatment, from about 240 to 180. I don’t really care for it, but smoking pot gave me back some of my appetite.
The interferon really messed with my mind. Your sister will not be herself for a long time. Everyone around her will have to understand this and just try to be supportive. My family and friends’ support was crucial in getting through this.
I give the most credit to surviving this (yes, I am still NED after 7 1/2 years!) to my deep-rooted belief that I would beat the cancer. Your sister has to be encouraged to believe this to the depths of her soul.
Please give my cell phone number to your sister. I generally don’t answer from numbers that I don’t recognize, so leave a message and I will call back. She can call 24 hours a day as long as she can hang in there while I wake up. I’ll drop whatever I’m doing to help somebody else through this.
Get yourself some therapy when you need it. Interferon therapy is not only tough on the people who take it, but tough on the people who love them.
I really hope her sister calls me. Anything I can do to help somebody else through this is worth it.
I’ve heard from a couple of melanoma patients over the years and done my best to try to encourage them while they get through the treatment. I’d love to be able to help more.
Posted by Greg as Melanoma at 20:30 PST
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I finally got a call back from my doctor, and I don’t feel like I really understand what he was saying, or more importantly, its significance. I really need to find a new doctor. I mean, he’s a nice enough guy, and seems very competent, but he must be from the old school of physicians, those that think that it’s not important whether the patient understands every detail, as long as the doctor does; or he can’t quite figure it out himself.
The gist that I caught from our brief conversation (he did catch me at a very hectic time) was that the lump seems to be a lymph node, swollen, of course, and it’s either referred to (perhaps in its current attention-seeking state) as a nodule, or it has a nodule in it. I don’t know what to make of any of it. Isn’t a swollen lymph node bad, signifying some other portentous battle under way in my body? And what’s that lymph node doing out there anyway?
I wouldn’t mind so much if my doctor hasn’t figured out what it is yet, and what is causing it, if he would just run down the list with me and tell me what has been eliminated, what is still in the running, and what we’re going to do about it. Instead, he wants me to come back in a month and he’ll check on it. Now, I’ve only been seeing him since this incident started; he’s a member of my regular oncologist’s medical group, but my oncologist just announced his retirement. Maybe I should look up my old surgeon. I could try getting my hands on the lab report and drawing my own conclusions, but that’s probably as advisable as being your own attorney (my current court room record acting on my own behalf: 3-1.) Still, I think it’s time to look around.
Oh – and the hole in my chest keeps leaking. Every now and then I feel it when I reach too high for something, or lift something too heavy, or twist around too hard. I can’t take it seriously enough to baby myself – it’s just too damned small – but I’m going to ruin a bunch of shirts this way.
Posted by Greg as Melanoma, Posts About Me at 05:56 PST
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Thursday morning got to be quite hectic. Without going through the sequence as I figured it out, the consulting radiologist and my oncological surgeon had gotten together and decided to change my procedure. Unfortunately, everybody involved thought that somebody else was going to call me to let me know, and I had a last minute change to adapt to.
I had thought that I was slated for a general anesthesia procedure, where the surgeon would slice me open and remove the offending lesion. The revised procedure was to use only local anesthetic and extract it with a probe guided by ultrasound. Fair enough – it sounded less invasive, safer, and probably would have faster recovery. Plus I could drive myself home. The big downside, which really amused the scheduling assistant when I complained about it, was that I wouldn’t get the opportunity to have gory photos taken that I could post on my blog. See, Readers – I try and keep your interests in mind!
One thing that struck me as strange was that, when the scheduling assistant was giving directions for where I was to go, she was really vague when I asked about the sign over the desk where I was supposed to check in. When I got to the building and rode up to the second floor, I saw why – it was the Women’s Imaging Center. And she was right – they were expecting me. At least, while I was waiting to be checked in, there was a very well picked over newspaper lying around – the only remaining section was Sports!
I may have cracked a huge secret, guys. If you want to be pampered, to have a small crowd of women hovering over you, fetching pillows, offering juice, explaining everything as you go along, and laughing at your feeble jokes: go get treatment at a women’s center! It got to the point where I was unnerved. I made the observation that I was used to more brusque treatment, and they just laughed and hovered some more! It was pretty cool.
On to technical details. I lay down on my back for the initial ultrasound examination. At this point, I discovered that the lump seemed to have gotten bigger again – by my probing fingers, it seemed a good 3 cm wide by 1½ – 2 cm. Worse, we had trouble discerning the boundaries of the lesion on the ultrasonic display. I could see the whole thing on the display. While we were doing this, the doctor asked about the history on this lump. I ran down the list – PET scan, needle biopsy, MRI. She was interested in the biopsy, and from my description she said it sounded like a fine needle biopsy, and she didn’t seem surprised that it was inconclusive. I questioned the doctor about the size, and whether she would be able to remove the whole thing. She responded that if it had been smaller, she could probably had removed the entire lesion but, as it looked, she thought she could get 50% of it. This disappointed me – I was hoping that this was going the end of the entire episode, other than an after action report. The doctor said that we would definitely be getting a large enough sample size to conclusive identify the lesion.
I was pricked a few times as local anesthetic was injected into the area, which didn’t burn the way I recalled, but seemed to numb everything up, and I didn’t feel a thing as the doctor made a small incision and inserted the probe. There was some pushing and twisting, and soon enough I could see the probe in the ultrasonic screen. The aspirator was turned on, after they warned me first – they didn’t want me to be startled by the noise. The probe that was being used is known as a Mammotome® probe, and its use is illustrated by this graphic I pulled of the Johnson & Johnson site:
Poke, suck, cut. That’s the idea. The poking went fine – I didn’t feel it at all. Then the suction started. I felt that – it varied from a gentle pressure to feeling like a small black hole had popped up inside my chest. But the cutting – I felt every bit of that. After the first one, I informed the doctor that I had felt it, and we paused to stick me with more locals. Then she started again, but there was no difference, possibly because the local had gone into my bloodstream, because I apparently bled like a stuck pig afterwards, and the doctor commented that whatever it was, it had a rich blood supply. The noise wasn’t a help – the cutting edge was apparently on a ratchet. I held up through it for three or so more cuts, then observed aloud that the pain was getting a little intolerable. I was trying hard not to flinch or move at all, and I got about the same reaction as I had from that PA at Camp Mackall, so long ago, when he was dubiously stabbing his thumb into my foot, telling me and everyone around that there was no way the bone was broken, when an x-ray would later show I had a complete fracture of the third metatarsal. (I’ll always remember the x-ray tech at the hospital at Fort Bragg, coming out with a hand of films to the five of us that had been driven over – “You’re fine, you’re fine, you’re fine, you’re fine, you can all go back – and you,” turning to me, “you’re not going anywhere.”) It’s not that I don’t feel pain, it’s just that early in my military career I made a point of learning how to endure it silently. I always figured that one day it might save my life, or better yet, the lives of my buddies, if I was grievously injured while we were trying to, say, sneak up on an enemy position, or trying to elude some soldiers who thought that stabbing a hiding place with their bayonets was a good enough search. Most of you would probably consider it macho bullshit, but Those Like Us know what I’m talking about. (Catch the Gardens of Stone reference?)
But that was it. The doctor announced that she was finished, although I could see from the ultrasound that there was still a good bit remaining of this abnormal growth that had formed in my body remaining. I’d like to say that I pressured her into going for taking more of it out, but in truth, I’d had enough. I was wishing then that they hadn’t changed the procedure, and that I had gone under and they had got the whole thing out, but it was a bit late for my input. Now that I think about it, I kind of resent that. I’m fairly certain that I’m going to have to go under the knife again.
Then the probe was withdrawn, and I had to wait through a lot of sissy-ass treatment for my bleeding. They had gotten me on a roll, chatting me up and admiring any bravado I showed, while a little bundle of gauze was pressed on the tiny hole, and I had to go wait in the post-op room for another half hour because the doctor was “concerned” about blood loss. Overall, they were really polite and considerate, but it just wasn’t the treatment I was used to, and it left me with a longing for the “deal with it, soldier” attitude to which I was inured.
I should have the results of the biopsy by Tuesday.
Posted by Greg as Melanoma, Posts About Me at 13:59 PST
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Apparently, my surgeon was wrong about the lymphedema. (I’ve stopped trying to finish the MRI story for now – I hope to get back to it.) The MRI results came back, and I definitely have a “lesion”. Instead of continuing to try and figure out what it is, we’ll wait for the lab results after some technician cuts up the whole thing and puts it under the microscope, or whatever it is that they do, because I’m just going to get the whole thing cut out. Surgery is scheduled for next week – Thursday, 15 June, at 1400 PDT.
We have a fairly high degree of confidence that whatever it is, it’s not malignant, thanks to the PET scan, so I’m only running a small risk that I’ll have to go back under the knife to remove more surrounding tissue. I’ll be getting general anesthesia on an outpatient basis, and hope to be back to work quickly, although I’ve requested the following day (Friday) off as well. The Incident of the Mysterious Lump is going to come to an end.
Posted by Greg as General Science, Melanoma, Posts About Me at 18:15 PST
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*** This is Part 2. Part 1 is here ***
Phew. Had to take a break. I’m fascinated by all the technology involved with this, so it’s even harder than normal to contain my curiosity about every little facet, and I spend more time searching than writing. I did, however, manage to identify the raised platform with breast holes and the framework the techs were trying to strap on to me – they were RF coils. I was trying to elaborate, but the Wikipedia MRI page is like a huge black hole that keeps trying to suck me in, and I want to get back to the story. (There’s also a pretty good layman’s article at How Stuff Works, and an every-little-detail package at The Basics of MRI.)
So I was wedged into this tube, trying to stay relaxed, and the noises started.
An MRI doesn’t sound anything like somebody beating on a can. It was loud, but with the earplugs, not painfully so. What startled me was the nature of the sound – it clearly wasn’t mechanical. It had lots of buzzing and resonating thumping, and it wasn’t constant or even regular. There were frequent pauses before the next sequence of sounds started up, and each sequence had a different pattern, which caught me off guard each time. You can go off site to hear sample sounds – I haven’t found a good embedded player for WordPress yet. The noise is caused by the harmonics induced by the rapidly switching magnetic fields.
Although the magnetic fields inside an MRI are incredibly strong – thousands of times the strength of the Earth’s magnetic field – we supposedly aren’t capable of sensing them. But at times I felt something. Most often it was like a very faint sensation of having all the hairs on your body stand up at once – then start wiggling really fast. But I also felt weird, indescribable feelings of pulling and twitching throughout my body, and flashes of heat. It could have been entirely psychosomatic, I guess. Apparently, the only established effects of exposure to strong magnetic fields are vertigo and nausea. Prior to my scan, I had to go over a list of implants and other foreign materials that would be adversely affected by the strong fields, or that could have an adverse affect on me when they reacted by moving closer to the magnets. I didn’t see anything to worry about.
DAMN IT! WHERE’S THE TIME KEEP GOING? TO BE CONTINUED…
Posted by Greg as General Science, Melanoma, Posts About Me at 00:08 PST
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Early yesterday evening I went over to Sharp Memorial Outpatient Pavilion for a scheduled MRI (my first one ever) to confirm my oncological surgeon’s recent diagnosis of the lump in my chest as a lymphedema. By which, I’m assuming he means “mild case of…”, because after recently learning the difference between lymphedema and the more general edema (the latter was what I thought my original surgeon had warned me about after my surgery to remove lymph nodes), I did some research and found some really bad horror stories – with pictures. So it’s hard to put the words “lymphedema” and “good” in the same sentence; but if true, the lessor relief is that I will not need surgery. I was very concerned that the lump is either a metastasis of my original melanoma or a case of male breast cancer, since the women in my family seem to be pretty good at getting it. So lymphedema, especially since it’s already getting smaller, is acceptable, I guess.
Earlier this week I was trying to encourage someone to not be afraid of taking a PET scan, which all the while seemed a little silly, because pretty much the hardest thing I found in the three I’ve taken was staying awake – I have a tendency to roll onto my side when I fall asleep. And snore. Really loud. I mean, REALLY, REALLY loud. But if Andrea had ever taken an MRI before her first PET scan, it would all make sense.
I had heard the your-body-in-a-tin-can-and-somebody-banging-on-the-outside-with-a-big-stick simile so many times, it was all I was expecting, and it didn’t sound too bad. I don’t consider myself to be claustrophobic, and we have a two-year-old at home, so someone always seems to be a) banging on something with a stick, or b) yelling about it. I figured I would still have to worry about falling asleep.
Looking back now, it wasn’t really all that bad an experience; but it was unpleasant, and unpleasant in ways that I wasn’t prepared for. When I showed up, the tech, as usual, got this worried look and started asking questions about my height and weight. I’m used to that, for these imaging techs always seem to be going by the conservative guidelines published by their equipment’s manufacturers, who don’t want the liability, and who either don’t know or don’t care how much more an enthusiastic and enterprising person can stuff into an orifice. But in my particular case, “stuffing” is an apt description of how we got my 195 cm (6′ 5″), 122 kg (270 lb.) frame into the desired area.
First, I had to get an IV set up. When I asked them to use the tourniquet as briefly as possible because of my lymph node removal, they decided that they needed to consult with somebody for instructions. While they were on the phone, I tried using my thumb to press deep between my biceps and triceps muscles to try to squeeze off the brachial artery, and flexed my arm muscles to try to get my veins to pop out a bit. I wanted to make the veins in the cleft of my elbow more prominent so that they wouldn’t have to use the tourniquet. Lymph has a much smaller, distributed circulatory system, and I figured that if I could directly manipulate my blood vessels, I might have found a way to get blood drawn (I seem to be getting blood drawn on a regular basis nowadays) while reducing the risk of lymphedema. While I was thinking this out, I realized that I was attempting to shut off the blood supply while looking for an effect that was caused by reducing the blood return. See? I’m not afraid to expose my ignorance to my readers! Somehow, probably just through the muscle clenching, I got a vein to stick out and I went ahead and got poked sans tourniquet. While I was being hooked up, I inquired as to what was being pumped into me, and was told that is was a contrast agent containing gadolinium, which is used because it is one of the few elements other than iron that is magnetic.
Next, I had to get into position on the bed of the MRI scanner. Here’s a small picture of the machine – I have so far tracked it down to one made by Phillips, of the Achieva line – when I learn more, I’ll post it.)
The bed was fitted with a raised platform with apertures for breasts – up to rather large breasts, as I can see from the sample images at the Phillips site – but that didn’t help me and probably took away room inside the scanner that I later would have preferred to have had. I lay on my stomach with my arms extended ahead of me, and my head propped up on pillows and turned to one side, with my face resting against my right arm. It seemed pretty comfy, and there wasn’t any part of me to hang up the IV tube, and they proceed to strap me in, securing some sort of framework on my back. I tried the headphones – they were offering music – but it was either have my face stuffed into a pillow or the earpiece jammed into the side of my head, so I opted for earplugs instead. Then we tried sliding the bed into the bowels of the machine. Right away, it was clear that it wasn’t going to work. There was barely enough room for my shoulders, let alone the framework on my back, so they pulled me back out, removed the framework and slid it under me, and tried again.
At first I thought there was plenty of room, but the hole apparently had two stages, and as I was carried further inwards, my normal chest size of about 142 cm (56 inches) felt like it was being reduced a good couple of inches. My guttural and vocal reaction (!) caused the movement to halt, and there was more consternation. The tech asked me whether I could breathe, and, although I couldn’t expand my chest normally, I thought I could get enough air into my lungs by exaggerating the action of my diaphragm. (As I am analyzing the experience as I write, it occurs to me that this means that my chest is still bigger than my belly – so that post-Army beer gut I’ve developed could be worse!) By this point I was starting to realize that thirty minutes was going to seem like a really long time, but what choice did I have? I told them I was going to be ok. My face was pressed hard against the inside and against my arm, which was also barely fitting into the tube, and I opened my eyes, reconsidered, then tried again a few times. Although I saw material for a possibly interesting introspection about the true meaning of claustrophobia, it just didn’t seem like the right time. I kept my eyes shut the rest of the time.
So I was prone, physically compressed, unable to move, having to breathe deliberately, and aware that I would not only have to try not to fidget, but I was consciously suppressing a newly discovered (or acknowledged) fear of confined spaces. Not my definition of comfortable. And we hadn’t even started yet.
Posted by Greg as General Science, Melanoma, Posts About Me at 15:46 PST
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I’m a technophile, so for me, taking a PET scan was an interesting exposure to a piece of highly sophisticated medical imaging equipment. I even had to be prompted to write about the experience from the perspective of a patient, not a huge construct of subatomic particles.
And, although I am familiar with that special fear felt by those recently diagnosed with cancer, it is apparently not on par with the terror that can be felt by people who are unfamiliar with and afraid of the testing equipment and procedures they must go through to be properly staged, so that the level and extent of their cancer can be determined, and thus their prospects for various unpleasant treatments and their chances for survival.
I get a bit of traffic coming through my site from people looking for information about PET scans, and I’m guessing that a significant portion of this traffic is from people who have been told that they need to undergo this procedure. Still, I wasn’t quite prepared when I got an email from someone who was afraid of going through the scan.
I tried to give what comfort I could, and we corresponded regularly over the last week or so, so I am very, very happy to report that her PET scan came back negative for metastasis. Another cancer survivor!
At my request, she wrote about her experience:
Thank you so much for the opportunity for letting me write this. I really enjoy helping others.
My name is Andrea and I would like you to know I just recently went through a PET scan. Praying helped me get through and keeping my eyes closed all the time. That might sound strange but true. It is similar to a CT scan, it really was fine. Take a cd that you like and you will do fine. I hope this helps whoever is going to have this scan. Just keep positive and pray.
I want to join Andrea and emphasize to anyone that is about to go through a PET scan – this is not a difficult experience to get through. It’s not noisy, and not particularly confining. You will go through a short tube, but the open ends are very close by. You will have to get an injection of a radioactive tracer – despite the clunky metal container that the tracer comes in, it’s going to feel just like a regular shot – no burning or anything. You will have to lie still for quite a while – I like Andrea’s suggestion to take some calming music. There’s really nothing to be afraid of except what the results might tell you – and the PET scan itself is just a tool to see what is already there. This sort of scan is one of the best ways to give your doctors the information they need to give you the best possible treatment for your disease, so you need to think of the PET scan as something that is helping you. And for those of you who get bad news, I urge you to read Stephen Jay Gould’s The Median Isn’t The Message – even the bleakest circumstances might have some hope.
Comments are welcome, and again I’ll invite anybody who wants to know more to contact me. (You can disregard the encryption stuff, nobody ever uses it.) I’d also be glad to pass on anything to Andrea.
Earlier today I scheduled my first MRI ever, to confirm my doctor’s diagnosis of the lump in my chest as lymphedema. Now an MRI, I’ve heard, is akin to being shoved head-first into a small metal barrel while someone is pounding away on the outside with a big stick. I’ll try to be a little less phlegmatic when describing it after Saturday.
Posted by Greg as Melanoma, Posts About Me at 12:13 PST
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I heard from my oncological surgeon on Monday. The report had come back from the biopsy of the lump in my chest (finally) and the results were – inconclusive. He told me my options were to attempt another biopsy with a larger needle, or to just go ahead with a surgical removal.
At first, I didn’t see the point in another biopsy. With my PET scan results having shown no hyperactivity, I thought that malignancy had been ruled out, so only the lump material was going to be be removed. They could test the lump itself to identify it. Not so, says he. Apparently, a PET scan is not ultimately authoritative. I should have known that – there always appear to be exceptions in medicine. There still was a chance it could be malignant, and that would require more radical removal, so if there turned out to be a problem, a second surgery would be required. (And it didn’t occur to me until now, but a second surgery would be complicated because the first might have disturbed malignant tissue, causing cells to start spreading to other parts of my body.) I scheduled an appointment for the next day to discuss it.
Later that evening, when I thought it out, it became clear to me that it was foolish not to undergo another biopsy first. Thinking as an engineer, who won’t want to eliminate a potential hazard of small probability but major consequence with a simple preliminary test? The cost of such testing to me was only a $25 copay and a brief period of pain, and (I can’t believe I haven’t blogged about this yet) I once walked a good five kilometers on a broken foot (third metatarsal, complete fracture) carrying a thirty kilo backpack (in the rain, in the wee hours.)
So I called the doctor’s office in the morning, told them I had decided on the biopsy, and made sure that they scheduled enough time to do it right away. After all, there was no need to have the discussion and then schedule another appointment with another $25 copay!
I went in with some trepidation, starting to get anxious again after being so relieved after the PET scan, and half expecting him to pull out some gag-shop syringe with a needle the size of a drinking straw. But he examined me first and then stopped. The lump had gotten significantly smaller. I hadn’t noticed, because I had stopped feeling it up every day after I got the PET scan results. It changed everything, he said. Now, it was clear to him that the lump was a lymphedema – a backup of lymph fluid, full of fats and complex proteins, caused by the removal of lymph nodes in my armpit, and it appeared to be going away by itself. He’s putting me in for an MRI to confirm the diagnosis, but he seemed very confident. So – no surgery for me!
Posted by Greg as General Science, Melanoma at 23:29 PST
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I got my first email from someone who read about my cancer experience online and is going through the same thing. It started off with “i am really scared.”
I wrote back, and I hope I was able to give some comfort, and that I’ll hear from her again, but it’s such an awesome responsibility to be the one that someone in fear turns to, and I’m feeling very inadequate as a counselor. My blog is not really about my cancer experience, but it was, and still is, a big factor in my life, so it’s hard not to write about it on occasion. I do get some hits from people searching for the terms melanoma blog or pet scan, and I’ve been linked to from Tiffany’s Melanoma Foundation Blog (thankfully, they knew what they were doing, and linked to my melanoma category instead of the whole thing.)
But I’m such a dry, technical writer; not one who describes his emotions very well. What do you expect? I’m a geek. Whenever I am feeling very emotional and I sit down and write about it, it usually reads back like someone who’s had a couple or six drinks, and I get uncomfortable about posting it.
The thing that concerned me was that if this person turned to me, she must really be desperate, and although I’m glad to help, I feel like she needed more than I can give. So I did a little looking around myself for online support for the recently diagnosed, particularly those going through the torturous staging process, when you know you have cancer, but you don’t know how bad it is. I learned very quickly that you have to be very careful about your search terms – my first few tries landed me in blogs that were the preserved stories of people who had succumbed to their disease. Not what I was looking for at all. I’ll have to look further and put up some links, I think.
Does anyone know where I can get some advice or training on how to handle this better?
Posted by Greg as Melanoma, My Website, Posts About Me at 05:40 PST
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It’s been a week of growing anxiety as I’ve gone through the process of doctor visits and tests, but I just got a call from my oncologist, who said that my recent PET scan results were normal. This means that no matter what the lump that I found in my chest turns out to be, it’s not malignant. Very good news!
The biopsy results aren’t expected until Friday, so I won’t know exactly what it is until then. My doctors have already indicated that it would be a good idea to take it out regardless; but now, instead of having to take out a huge chunk of surrounding tissue as well, it should only be the lump itself that will be excised, and the sense of urgency has declined.
I feel soooo relieved.
Posted by Greg as Melanoma, Posts About Me at 10:30 PST
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