I’ve spend approximately the last two months worrying about metastatic cancer. I’m pleased to reveal in advance that there is no sign of it, and we’ve done some pretty thorough testing.
Even though I appear to still be cancer-free, I thought this little journal might be of interest to family members and care-givers… and maybe even to survivors.
As with Silver Linings I did not edit this. Polish might take the edge off the raw feelings, and then what would be the point. It’s a journal, not a novel. I’m posting it through Kat’s Quill largely because it’s more than 6000 words, and I, as a writer, feel like I shouldn’t hide that many words in the dark.
Be warned, there’s some strange shit in there.
March 30, 2013
I’m having a scare, and massive scanxiety, though I haven’t had the scan yet.
When I started my journal/blog during my treatment for primary breast cancer, I had already had the mastectomy surgery. The months of fear that led up to that time are less documented. I thought I’d get a head start, should things turn out to be bad.
Maybe I should start by saying that despite having chemo and a year’s worth of Herceptin and several clear scans since then, I never really believed I would die of old age. At first, I didn’t believe I’d get two years without mets. Then, as time went by and there were still no signs of cancer, I began to be able to even think about “next year”. It was only recently that I found it in me to imagine growing old.
And, now, maybe I won’t.
The pain in my spine might be from some other source. My oncologist said he thought there was a “less than fifty percent chance” that it would be cancer. I didn’t dare ask him if the number was more like forty-five or forty-nine… and it probably doesn’t matter. All I know is that if I had those odds at the lottery, I’d be buying 10 tickets a day!
This isn’t the first time I’ve been afraid I had bone mets. That was shortly after I’d finished chemo, and I had this inexplicable pain in my right shoulder. We eventually concluded (with the help of a clean bone scan) that the pain was a muscle pain most likely due to the restrictions on movement that I had at the time. The pain is still there, but it feels like a muscle pain now.
I first noted this current pain in late January 2013. I meant to talk about it to Dr. C during my appointment on the 31st, but I forgot, so I sent him a “visit follow-up” message telling him about it and asking it if seemed likely to be arthritis. He said it did sound like that was the most likely answer, but to keep him informed.
Watchful waiting. Sure, no problem.
So the pain got worse over time. Instead of only hurting when I stretched in a way that I don’t do every day, and then only a little, it is now hurting when I don’t move, hurting rather a lot when I move the “wrong way” and hurts during stretches that never bothered it before. Stretching the area makes it hurt more and the hurt lingers for some time. My chiropractor said that wasn’t a good sign, but he’s not an oncologist.
I think what finally pushed my paranoia over the edge was the memory that most bone mets are discovered by the targeted bone breaking. The idea of my spine breaking was too horrible to contemplate. So I made an appointment with Dr. C. He examined me physically and asked a bunch of questions, then said I could either have an MRI or a bone scan, but that he leaned toward the bone scan because while it does happen, it is unusual for there to be only one spot. An MRI would get more detailed information about the spot we know about, but could miss a ton of other spots.
If it’s not cancer, the next quest will be to figure out what it is. I have a lot of symptoms of fibromyalgia, and if I don’t have stage iv cancer, I’ll ask to be evaluated for that and what relief might be available.
The worst part about waiting is that I can’t start making plans. The least of which is that I probably won’t bother with whether or not I have fibromyalgia if I have stage iv. But even if I knew it was cancer, until I know how progressed it is, I can’t really think about “what next”?
Olav and I have had some good conversations about it, though. Our conversations have largely been directed at what happens if I turn out to have a short time to live (many instances of metastases).
I told him that quality of life was paramount for me. That if I had my way I’d be okay with minimal palliative care and then suddenly come up with massive mets in my liver or some such that would kill me in a week. I don’t want to linger in misery. I don’t want to have to have someone change my diapers. I also told him that I would like to die at home, not at the hospital (although in the case of massive systemic failure, that may not be an option. I might just go too fast. I probably wouldn’t care at that point).
When I was waiting to hear the news about whether my breast lumps were cancer, what I wanted more than anything else was to know. I was angry, hurt, felt betrayed by a body-part that I loved and I was afraid. Afraid that I might lose a life I had so recently gained, a life that I loved. My fear was very nearly paralyzing.
Today I do feel something of that paralyzing fear, but it’s not quite the same. The primary thing is not knowing “if” and “how much”.
For the other things, I have had five good years. They have had their multitudinous challenges, but through it all I’ve been blissfully happy. My children are still too young for their mother to die, but they are now old enough to remember me if I do. I don’t feel that sense of betrayal. I feel grateful to have been given these five years, and if it was only a respite, I’m kind of okay with that.
For all that I can’t stop thinking about it. But maybe I should stop writing about it for right now.
April 1
My blood tests came back with nothing suspicious. That doesn’t mean I’m safe, but it means I’m unlikely to fall into a coma this week.
I keep coming back to the mystery of how long I’ll live if I have mets. Could be 6 months (unlikely) or 10 years (also unlikely). How much time will I have?
And what will I do with it? I suspect I’ll stop writing books and focus on getting the ones already written published before I die.
I’ll probably do more photography.
I’ll write long letters to the people I love. I’ll make videos for the kids.
And there will be things I must do. I’ll have to make a will; my assets are few, but I’d best say what I want done with them. I need to make a list of my passwords so that Olav can access them if he wants to. I will have to make some sort of “life plan” describing how I’ll make the decision to end treatment and how I’d prefer to die at home with hospice care delivered.
I wonder if I’ll be around to do this great vacation trip my mom wants to take me and the family on.
April 2
The first thing I’ll worry about if I have stage iv is making sure my spine doesn’t break. That comes first first first.
I think I’ll have to be really convinced to do chemo again. Chemo steals your quality of life for about a year. If I only have a year left, or even two, it just doesn’t seem worth it.
I’ll be calling the scheduling gal tomorrow. I will drop any and everything to get this scan done.
Back after a short break… I think I might actually have two painful vertebrae. If so, I guess my chances of “it” being mets just went up. =\
April 3
I would like to spend the next week unconscious, please. This is waaaay too much time to brood over this. Olav has been so good about listening to my incessant ramblings about the various research I’ve done, almost all of which will be useless or irrelevant if my scan is clean.
My psyche has my pain sensors on overdrive. Every little twinge feels alarming, even when I know for a fact that it couldn’t possibly have anything to do with cancer. Example: I started taking a short walk at lunchtime after a long period of mostly being inactive. The muscles on my right shin hurt. Don’t ask me why they don’t both hurt, that’s weird, but not alarming. There is, in fact, nothing alarming about this muscular pain. But my body and my brain conspire against me and so I have to constantly tell myself “It’s okay, it’s okay.”
Of course, there are pains that could be cancer. And other pains which probably aren’t, but are still mysterious to me, like the crampy feelings in my lower abdomen.
I hurt all the time anyway, in some way or another, which surprisingly is of no help.
I called Renita to see if there was any news about scheduling. Insurance authorization is still pending, so the appt for the 11th is still on. She said that when the authorization comes through she’ll keep an eye out for cancellations.
The pain in my back has increased noticeably in the last week. Even accounting for the above mentioned over-reaction to pain I’m now experiencing. It recalls to mind how much more cancer was in me when I had my mastectomy than when I first noticed the lumps two and a half months prior.
I tried to search google to find out if an aggressive primary cancer was associated with aggressive metastatic cancer. I couldn’t find the information. Well, I can ask Dr. C if the bone scan shows mets.
My appointment with Dr. C is scheduled for the 18th, a week after the scan, but I’ll get the “yes or no” results sooner. Possibly not until the 15th, but I’m hoping for the 12th of course. In my experience and in the experience of people I know and have read about, if the scan shows mets I won’t have to wait to see Dr. C.
I really do dwell on “how much” as much as “if”. If I have only one spot now, I could live for another 10 years. If I have a multitude of spots, I’ll presumably have less time.
Bouncing to an entirely different topic, because that’s what my brain is doing right now, Olav and I have different ideas of when hospice should be invoked. I am not worried, though, that we will be in agreement when the time comes. A more fruitful google search gave me the knowledge that hospice care is covered by my insurance, and there’s no limit to how long you can use it; there are only two criteria: you must be diagnosed with a terminal illness and you must not continue with any treatments attempting to cure the illness – all care will be palliative, in other words.
If there’s one thing I trust Dr. C about (and there are many many things, in fact) it’s his compassion and skill with palliative care. I’ve never met a doctor who understood pain and pain management as well as he does. If I have mets, one thing I will bring up early is that I was too shy about my pain management during my primary treatment. I shouldn’t have lived with the amount of discomfort that I did. Particularly in light of the fact that I was already addicted. It wouldn’t have been any harder if I’d been taking twice as much, or any easier if I had taken half.
April 5
I managed to do less obsessing yesterday, mostly because I was busy all day long.
Another thing I worry about on top of the possibility of mets is whether the hormone and Her2 status have changed. The worst possibility would be that the Her2+ would be gone without gaining hormone positive status. This is because there would be no targeted treatments available. I’d really rather nothing changed. If I have hormone positive tumors, I’ll have to have hormone-related treatment, and I’d really rather not mess with my hormones. It does bad things to my mental health. At the same time, I don’t find the idea of going back to Herceptin treatment too horrible a thing.
I wonder if I can get another port. I doubt they’d let me put it in my arm again; I imagine there’s still some scarring from the blood clot I got from the first one. What I don’t know is if that history would prevent me from being able to get a chest port. I didn’t want one before (partially on the premise that I had enough scars on my chest already) but if I have to go through cancer treatment again, I think I’d rather have a port than have IVs constantly stuck in my arm. I never got used to that. It was always scary and painful to me.
April 6
My back and neck muscles have been slowly tightening up until today I can hardly think from the pain. This, I think, is due more to the anxiety than to the original point of pain. So I decided to plea for mercy at the urgent care. They gave me drugs, which should help, although I’ve been around the block too many times to hope for complete relief.
[some hours later] The meds have helped a little. Not a ton, but even a little makes consciousness more bearable.
It’s weird the things we – I mean “I” – can be sure of vs. the things that are doubtful. There is no reason behind my certainty that I don’t have mets in my lungs or my brain. I don’t feel certain I have mets anywhere, but I feel like they are in my bones, and I feel like I can’t rule out my liver. Not that I have any more evidence for lungs and brain. Actually I feel like I do have some reason for those thoughts. X-ray in January looked good for the lungs. The only spot in them seemed to be elsewhere on a different view, outside the lungs. Either way, it didn’t look like a cancerous spot. And I had a brain MRI last summer. Nothing at all suspicious there. My liver also shows up in the x-ray, I just have less of feeling of certainty.
I have this odd feeling, though, that I only have mets in one place so far. That all the other pains that could be related to mets are not mets. Doesn’t make any more sense than all that stuff in the last paragraph.
April 7
If I don’t have mets, maybe I should re-title this to “Anatomy of a Recurrence Scare”
Pain made me get up earlier than I’d have liked. Granted, hurting after being in bed “too long” has been a long-standing tradition for me. But I should have had at least 90 more minutes before that happened. I didn’t get up in the night to take more flexeril, but I headed straight for it when I got up.
Musing…
I have some odd spiritual beliefs. I believe that individually and collectively, we create the universe and all its myriad details. The logical extension of this is that I believe every situation, good or bad, is the fault of the person it happened to. This is not to say that I don’t feel compassion, or that I don’t sometimes feel sorry for myself.
When I had the primary cancer, I once said to Olav, “Well, I guess I do think this is my fault.” Which he thought was awful. I didn’t really get to explain myself, because our conversation moved on too quickly. I know it’s weird, but I can “blame” myself without feeling angry or ashamed or put-upon.
This is not that different than “God’s will”… except that we are all collectively God.
I would never say, or even think, “This is your own fault,” to anyone for any calamity that befell them. Although “ignorance of the law is no excuse”, I recognize that most people aren’t ready to believe or accept their own role in creating their universe. And most people don’t realize the extent to which we are responsible for our circumstances.
… I have been musing this morning about all the dark thoughts I’ve had about a recurrence over the last few years. Wondering if my somewhat negative attitude (kept mostly to myself) had bent my own personal universe to invite, even call, mets. A slightly more rational part of me says that something like “terminal cancer” would have to have been a part of the plan I had for myself in this life-time (the jury’s out on reincarnation).
On a micro level, I do believe that attitude plays a huge part in one’s experience. If a person thinks an experience will be bad, they will probably have a bad time. This applies to both conscious and unconscious attitudes. On a macro level, I think the “big” events in our lives were planned in before we were even born. Not the details, necessarily. For instance, say you were in a car accident and hurt your neck. The accident, the pain, or both could have been intentional from a macro perspective, but the details will have been left up in the air. It is not possible to predict (fortune telling) the exact scenario. The identity of the other driver, the type of car they drove (and you drove, for that matter), the location… all of those don’t matter very much in and of themselves.
This is hard to put into words, and I feel like I’m sounding like a loon.
So to complete my basic thought, I don’t judge myself for having set up my life this way. Rather, I find it comforting to know I am in charge. Even if I’m giving myself some pretty significant challenges.
Moving on…
If the pain in my spine isn’t mets, I hope the scan will give my doctors a clue about what is causing it. By itself the pain is still bearable, but it has been getting worse and worse. If cancer isn’t my problem, I’d like to find a way to at least slow the progression.
Later that same day…
Okay, my secret pessimistic hunch is that I have mets in three vertebrae and one rib.
April 9
I almost typed “April 10”… because I am so impatient to have the scan done.
With all my muscles tightened up from anxiety, it’s hard to tell where the pain is coming from right now. Also, the combination of anxiety and pain meds has totally decimated my ability to think clearly. I don’t mean I’m dopey and incoherent. It’s just that I apparently don’t have the attention span to get from one end of a long sentence to the other. Speaking, I mean.
Meh, I’ll go soak in the hot-tub for a bit.
April 12
8:30 am
My guess was that I would either relax or go into full on panic mode when the scan was over. I did neither. I unconsciously avoided the tech’s gaze. I would have done it consciously, but my brain was looking out for me, I guess. He seemed vaguely sad, but he seemed that way when I got there. It probably had nothing to do with me. Maybe his cat is sick.
So anyway, anxiety wasn’t precisely my problem at that point. I did feel scared, but I couldn’t pin down what was scaring me. Maybe I should have considered that the sum of them all, no matter how small they might seem, would surely be enough to equal one majorly scary thing.
I did no consideration, though, really. I felt sad in a general sense, and when the book I was reading came to the part where the main character dies, I cried noisily.
The tension that sent me to Urgent Care on Saturday began creeping up. I began taking large quantities of ativan. And then I took 150mg of seroquel to make sure I’d sleep. And it worked.
So here I am this morning. I got up when Olav did, partly because I realized I’d forgotten to make his lunch last night and partly from hurting. After I made his lunch we snuggled on the couch for a few minutes before he had to leave for work. When he left, I slept on the couch for a while, then decided a soak in the hot tub would help with falling back asleep. I have a hunch I’m going to need all the sleep I can get, need my strength.
Even if it is just the strength to laugh at myself for getting so worked up. My shrink said to me yesterday that I seemed kind of sure that cancer would be found. I said that a part of me felt that way, but I wasn’t entirely sure sure. If it’s not mets then next week I have to start thinking about some way to deal with my daily pain. It shouldn’t hurt this much just to be alive. I’m not saying I go through the day in agony, but I always hurt. Somewhere. I’ve just been so reluctant to pursue something that would involve taking another pill every day (or, gods forbid, two or three times a day). Also, a lot of those pills seem like they could interfere with the drugs I take to not go completely mental.
So anyway, I just wanted to get this last bit in here, whether or not it’s mets. Either way, it seemed important.
12:38
I went back to bed and kind of wish I were still asleep. I feel like I should wait until 3pm to call. I hope they’ll call me before I call them. I really hate calling that place.
5:00
Preliminary results show no sign of mets. There’s some degeneration in my neck, which I knew about – dates back to a car accident nearly 20 years ago. “Dr” I said there might be a bone spur or something going on there, and the next step would probably be an MRI. However, I’m to go through my primary for that. If it’s not cancer, the cancer people shouldn’t waste their time on it.
I feel really mixed up. So mixed up that I had to ask myself, What did you want to die? I don’t think I did… I just wanted an enemy to fight, and now I don’t have one.
And I have cramps.
I’ll wait until the final report comes out – and I don’t expect a phone call for that, I have an apt with Dr. C on Thursday – before sharing this as “Anatomy of a Scare”.
But I DO have to find some way to address the pain I live in daily. If I had mets, the meds I got to treat the mets pain would also help the rest of the pain. Now I’m left with no easy thing to point to to say “that is causing me pain” and get help.
Oh well, my tens unit is coming on Monday. Without having to worry that I’m somehow going to break my own spine using it, I should get a good amount of relief with it. So that’s good.
(somewhat later)
I informed the few parties in the know about the preliminary report. I’m going to hold ultimate judgment until after my meeting with Dr. C on Thursday.
I don’t know if I can put it out of my mind until Thursday or if every day will be a torture. We shall see. The worst of the scare, however, seems to be over.
April 13
I’m going to want a good look at that vertebrae that’s been hurting me. There has to be a reason, but it may not be the bone.
And now I’m off to research arthritis and fibromyalgia drugs, see if there’s something that can address both and not make me crazier (I seem to recall there being one that is essentially an SSRI. There’s only one SSRI that I can tolerate, and I don’t think I could tolerate it indefinitely).
Late Night almost ready for bed: I think I’m starting to realize I might not have to plan the rest of my life as soon as I feared.
April 14
Been researching fibromyalgia. Until I started looking into it, I thought “Well, yeah, I hurt every day, but I’m usually not handicapped by it.”
I was startled to find that the parts of me that usually hurt and are tender are the same ones on the fibro diagram. And then I thought, maybe I should read about the treatments.
So I’ve decided that I want to try Lyrica. The other well-known fibro drug is Cymbalta, which is a relative of Effexor, which I can’t take.
The idea that I don’t have to just suffer with this pain is just plain beyond my ability to grasp. I always thought that what I needed was hard-core narcotics and a lot of them. Doctor’s aren’t really into that solution, so unless I actually have a spasm or a sprain or some such I don’t even mention the pain. Maybe if I went to a smaller practice, the nurses would begin to notice the little helpless laugh with which I respond to “Are you in any pain today?” I generally decide it isn’t worth mentioning if I’m there for something else. I figured it would just distract the doc from the problem I went there for.
I also resisted the idea because I already swallow anywhere from 6-10 pills a day. I didn’t like the idea of another daily pill. Also, I need a medicine that won’t interfere with the other medicines I take.
But now, assuming that the preliminary bone-scan report agrees with the final, maybe I can finally get off my butt and seek some relief.
April 18 8:35 AM
My appointment with Dr. C is in a little less than half a’ hour; sixty men guard the castle gate. Wait, no, that’s the princess bride. My appointment is at 9:30.
Probably the appointment will consist of him explaining how the bone scan doesn’t show mets. He probably won’t be able to say what the problem is. He may wish to order an MRI, or to suggest I have my Primary order one. I definitely think it’s in order. The pain is progressing. Nothing helps it. The progression, at the very least, has got to stop. It’s not debilitating now, but at the rate it’s going, it will be before Summer is over.
There is a very small chance that the final report disagreed with the preliminary and does, in fact, indicate mets. I’d like to think I would have been called in early if that were the case, but I can imagine a scenario wherein Lou knew that he’d looked at and told me about the preliminary results and that nobody has, therefore, looked at the final. Seems unlikely, but I can just about stipulate that it’s possible.
I guess it’s also possible that Dr. C would order a PET or CT scan, but my guess would be that the MRI comes first because the cause of my pain could easily be something else. If the MRI indicates mets, then, obviously, a full body scan of my soft tissues would be in order.
I got my TENS unit on Monday, and man, I love that thing. It really has made these last few days easier, because I could get relief from the tension all this is causing without having to ask for more drugs. It’s a really great device, and gives me lasting relief. Approximately as long as the average dose of narcotics.
Relaxing those muscles that are bunching from tension has given me an interesting insight into the rest of the pain I experience. The “fibro points” don’t seem to respond as well, and the pain that brought me in early to see Dr. C is also unaffected. Of course, that’s pretty much unaffected by anything I’ve yet tried, and I’ve tried quite a few things by this point.
Oh well, best get ready to go. I don’t suppose this little journal will end with today. I don’t think I can end it until mets is totally ruled out. But with luck this will be the last real chapter of this scare.
April 20
I was right in my guesses, pretty much across the board.
Final Report confirmed the preliminary. It showed arthritis in a few places – none of which currently hurt me. Didn’t seem to show any in the places that hurt. Hmph. It showed “increased activity” (which doesn’t mean cancer necessarily; arthritis and old fractures often show up this way) in my right big toe. Again, what??? Oh well.
So Dr. C ordered an MRI on the dual premises that the scan would be scheduled sooner (and more easily, as far as insurance goes) if ordered by him than my primary and that, if it is cancer this would totally show it, at which point a PET/CT would be ordered to make sure there’s nothing going on elsewhere in my soft tissues. Unfortunately there isn’t a way in modern medicine to scan both bones and organs. My MRI will be done on Cinco de Mayo, so again there’s a fair amount of waiting.
However, this time, Dr. C said he thought the chance this was mets was near zero. Which is a number I like better than “less than fifty percent”. He also said, in contrast with the instructions that came with the TENS unit, that he could think of no reason the TENS should affect cancer under any circumstances.
So I tried the tens in that area. Cancer may not be affected, but whatever’s wrong with me is. The TENS merely aggravated it. So I won’t be doing that again. So: no mysterious ouchy place, and no tender spots. Still, that leaves me with plenty of area to treat.
I canceled my chiropractor appointment for Monday. Although my chiropractor primarily adjusts my neck, I still feel like it would be tempting fate to be wrenching my spine around while this mystery pain is undiagnosed.
Meanwhile the pain continues to worsen, and nobody knows why. Until I know why I can’t really stress about it, not properly. Heehee. But I am worried about it. This pain level at this time is not unbearable, but if it continues to progress at this rate it may well be debilitating by the end of summer.
April 28
I haven’t been freaking out nearly as much waiting for the MRI. I guess I trust my oncologist’s intuition.
I am stressed though. And on top of that, my brain chemistry is trying to respond to the onset of lovely weather. Since I’m too worried to manage hypomania, I’m left in this mildly buzzing place, which is uncomfortable but so far not dangerous.
Between the worry, the buzzing and the pain I’ve been dealing with, I’ve barely had the mental, physical and/or emotional strength to maintain my housekeeping routines. I haven’t done any new projects and haven’t been working on my writing. I’ve done some photography, since that seems to be my answer to overwhelming worry. But I have maintained the house, kept up on the laundry and even added a new item to the routine. I’m kind of proud of myself for that.
I don’t think things are working out with my shrink. Well, I’m hoping that I can keep him on for medication management, but we just can’t seem to get in synch for therapy. That’s okay with me.
The pain in my spine seems to have hit a plateau, although if I know pain it could start ramping up again at any time. To counteract the lack of increased discomfort in that spot, muscles in the region are starting to tighten up, which is tricky because I don’t want to get too close to the spot with the TENS, as that seems to aggravate it.
I feel like printing out a line drawing of a human body and coloring it in to show where I hurt and what kind of pain it is. I’ve been trying to pin down when I started to be in pain every day (in addition to chronic daily headaches and migraines). I can’t do it. Two spots on my back that I am now tending to think of as “fibro spots” appeared some time in the year after my mast. But I know that between then and now there was a while when head pain was the main thing. Some time in the last year, I think, it started to become worse. I’m tired of it, I know that.
So yeah, waiting for the MRI, a week from now. The results will be back quickly. If it’s not cancer, Dr. C will send me off to my primary. Or possibly some specialist, but since I have NO clue what could be causing this pain I couldn’t guess what sort. As tired as I am of this fibro-like pain, I feel like the priority should be the spinal thing.
Also and randomly, I am not amused that my shoulder joints have started to hurt a little. I saw the “indicates arthritis” spots on the bone scan. I feel like my shoulders said to themselves, “Hey, we’ve been slacking! Time to start hurting!” Grrrr.
I haven’t been letting the pain keep me from doing things, but if it gets worse or even if I don’t get some relief I can see that happening. Meh.
May 4
The MRI is tomorrow. I’ll be glad to get it over with. I have a number of fears, mostly irrational. The worst outcome, I think, would be for them to find no explanation for my pain. A scarier fear is that they’ll find nothing and decide they need to cut me open to look inside. The less-than-probably-rational fear is that they’ll find something so bad that they’ll immediately start prepping me for surgery.
If this pain were almost anywhere else it wouldn’t scare me as much. The spine is a tricky and extremely important bit. I’m harboring a dark fear of becoming para – or gods forbid quadra – plegic. I don’t think I’d want to live if that happened. I could almost live with not being able to move, but not being able to feel as well… well it would certainly make intimacy a major challenge, for one thing. Also, I’m a photographer and a writer… kinda need my hands.
Once the MRI results are in, I can move on. In what direction, I have no idea yet. But there will be something to do other than waiting around being afraid. And in pain.
May 7
The MRI went fine, as far as these things go. The MRI guy was pleasant and cheerful throughout (kinda like the opposite of the bone-scan guy). He told me that there wasn’t a protocol for a full-spine MRI and he was building it from doing mine. Interesting!
He said Dr. C would have the results Monday afternoon. Since I didn’t hear anything yesterday, I’m assuming that whatever my problem is, it’s not cancer. I can’t be sure, since I’m seeing Dr. C on Thursday anyway, but usually the routine after finding cancer on a scan is to immediately call in the patient. But if there’s no pressing need for that, I suppose they might wait.
Holding my worry at bay (more or less) has been taking its toll on me. I’m taking more seroquel than usual on a daily basis and have been dealing with a great deal of muscular, tension-type pain (in addition to the fibro-like pain and the pain that got all this rolling). I’ve been finding it hard to concentrate and feel like there’s not much room for anything else in my head. This has been dragging on way too long.
May 11
The good news and the bad news from my MRI are the same: Nothing appears to be wrong. So, no mets, which is very good. No answer as to why the pain is there is definitely bad
This takes it out of my oncologist’s hands. So I made an appointment for next week with my primary care doc to discuss the MRI results and see if there’s anything left that can be done, as well as evaluate me for fibromyalgia (or possibly she’ll refer me to someone else for the evaluation).
Now that I’m more confident that I’ll keep on living for a while, it’s time for me to get back to work. I’m writing something in July, and I don’t even have a rough outline yet. Yikes!