Ashe Elton Parker

A Writer of LGBTQ+ Characters in Speculative Fiction

Tag: cancer (page 2 of 4)

My Indie Publishing Career

It has long been my intent to go to college to gain skills for a good-paying job. Some few years ago (’09-’10 or thereabouts), I determined to go to community college for an Associate’s Degree in Accounting. That plan fell through one day because I couldn’t convince my mother, who’d driven me to the community college’s main campus to finish my applications process, to park where the parking lot attendant told her to. Upon hearing we couldn’t park in the cordoned-off area where students, staff, and faculty were permitted to park (provided they had the appropriate sticker or tag or whatever), Mom turned the car around the watch post with the declaration, “I’m not walking all that way to get to the building, and it’s too hot to sit in the car!”

Then again, Mom was never exactly supportive of my goal.

I let that setback beat me back down to the point of not bothering, and it was compounded a couple days later when I went to the financial aid site anyway to apply . . . and had an anxiety attack. Not a severe one, but I could not for the life of me get past the first few boxes I had to fill in with my name and other pertinent information required. It did not abate until I closed the site and went to read to get my mind off the stress of preparing for school, which I’d previously determined I’d find a way to get into no matter what it cost.

It remained in the back of my mind, though. Over the intervening years since my failed attempt, I researched careers, doing a better job this time, and finally settled on Medical Coding and Billing as the career I’d enter. I found the community college’s page with the listing of the class requirements on it and bookmarked it to revisit every so often to inure myself to the idea of going to school. I set a goal: I’d start school in Fall Semester of 2013.

Then I was diagnosed with cancer in August of last year, and all the appointments required for everything from examinations to surgeries to consults for chemo treatment took up that time I needed to apply, prepare, and attend classes. So I set back my college goal to Fall Semester of 2014. I would go to college in 2014, no matter what.

This entire time, I had the plan to Indie Publish my writing. I had that “all” set up in my mind. I’d finish a set number of books, then release them as soon as I had a paying job with my new Medical Coding and Billing skill. This thinking, I have to admit, was carried over from my old, abandoned, Trad Pub goal days. That goal was born in the Nineties. I’d have/get a full time job, write in my off-time, and send my finished product on the rounds of agents. And become Published.

I should say, these were the days when I was much more mentally stable without medications than I am now. I could have handled the Trad Publishing route then. My Bipolar, which I’m certain I presented to some extent in the Nineties (and probably even before, possibly as young as my teens), was not severe. I could sleep nights without assistance from even over-the-counter sleep aids. I was able to hold down a full-time job, and I appreciated all the “free” time my manufacturing positions gave my mind to play with story scenes and ideas, because I’d spend second shift working preplanning one or more scenes in my head, running them through over and over again until they were very nearly edited to perfection in my mind, then go home to spend the hours between midnight and three in the morning actually typing them out on Kitchen Imp, the computer Mom bought, which we put on a desk in the kitchen. A Trad Pub career for me at that time, if I’d been able to launch myself into it, may well have been successful. I was driven, and I was dedicated, and I intended to set the world on fire with my fantasy stories.

And I clung to that dream. Desperately. Get off of Government support. Get an education. Get a good-paying job. Then launch my publishing career. I had other goals wrapped up in this. Namely transitioning as far as possible and buying my own home. And those are still my goals. However, they’ve never been as powerful as my goal to become Published. And, even when I switched my goal to becoming Indie Published, the strength of my desire to be Published never flagged.

But I had an epiphany last week. At some point. I’m not sure what day any more. Probably at some point during the all-nighter I pulled in an attempt to reset my circadian rhythm. Such epiphanies as this generally hit me when I’m exhausted. Being overtired frees my mind, and I make progress on writing if I’m lucky, or have epiphanies about other things to do with my writing or, sometimes, as this one was, regarding my Real Life.

It occurred to me I could launch my Indie Publishing Career any time I want. I could launch it tomorrow, though I’d be woefully unprepared, and my books wouldn’t have covers, and half a hundred other things which need doing and need time to be done, not the least of which is completing radiation treatments. But I could launch my Indie Publishing Career tomorrow if I wanted.

It took several days for this flash of realization to really sink in, though, and I spent those days totally amazed at it, stunned, unable to believe the audacity of the thought. Any time I want. It, frankly, terrified me at first, this thought. As much as going to school terrified me. And I had to let that terror fade before I could even consider the option without freezing and experiencing a deeper anxiety than trying to fill out the financial aid form years ago gave me.

Once it faded sufficiently—a few days ago—I drew J.A. Marlow, the resident Indie Publishing Expert at Forward Motion for Writers into an Instant Messaging chat to discuss what I needed to do to begin the process of establishing my Indie Publishing Career from my current financial status. She had much good advice, and it got me thinking about things I need to start thinking about now if I’m going to make my Indie Publishing Career fly.

No, I’m not scrapping my college goals. They’re being set aside for the nonce, but not forgotten. First things I need to do are talk with Social Security about my SSDI and the VA about my Pension to determine what’s going to happen with my income. This is of prime importance. I need to know what to expect so I can plan for losing at least a part of this income once I start earning any money from sales of books, even if it’s only one or two sales a month. I can’t do this until after my radiation treatments are done, because it’s going to take at least half a day for five days a week anywhere from three to six and a half weeks to get this done—I won’t know until my contract to join the research study is signed and processed and the arm of the study I’m to go in has been randomly selected. Once I’m done radiation treatments, I’ll have the time I need to visit with representatives of Social Security and the VA to discuss this with them.

So, for the next several weeks, I’m going to create a list of questions to ask. I’m going to formulate a tentative Indie Publishing Career Plan, which I will set into motion before I’m certain of anything, because my goal to Indie Publish will remain no matter what, and no date is carved in stone at this point.

I will say this, however: My instinct is to scrap the school-and-paying-job goal and run with the Indie Publishing Career goal. I feel more strongly about this than about any other goal I’ve ever set or claimed to have. Even transitioning. Yes, I want to transition. I’d also very much like to buy my own place to live. But I don’t want either of those things with the same burning fire in the pit of my belly as I want my Indie Publishing Career. As terrifying (and, yes, I’m still deeply terrified of my Indie Publishing Career goal), as it is to think I may be able to get my Indie Publishing Career off the ground from where I’m at right now, it’s also exciting to think about. I feel more anticipation about this than about any other personal goal I’ve ever had. I want to go out and get it done right this minute and have felt this way, in some small way, from the moment I realized I could have my Indie Publishing Career any time I want.

It’s a big risk, an even greater challenge, but I feel better over this possibility than I’ve ever felt over my school-and-paying-job goal. That never excited me; I felt more dread over it, and trapped, and quailed at the thought of forcing myself to endure an uninspiring job. Starting my Indie Publishing Career absolutely thrills me, and the thought I could live my dream of sharing my words with people within two or three years instead of four or six fills me with such joy I don’t think I’ll ever forget the feeling.

But I’m not going to leap without looking, and I’m not going to do it without knowing what I can expect when I start publishing. I have plenty of time to research things and make a well-thought-out decision about this. It’s just that I feel far, far more certain about my Indie Publishing Career goal than I ever did about my school-and-a-paying-job goal.

Side Effects Update 3

This entry is part 26 of 44 in the series Breast Cancer Posts

I had my third chemo treatment on the 31st of December. Yes, New Year’s Eve. Then I proceeded to sit up past midnight (not really celebrating, but just zoning, fiddling with different things, and generally being a nuisance to myself).

Oops, I forgot to take my prep-antinausea meds the evening before and the morning of my treatment before leaving home. Nurse who did my chemo was displeased. I felt baaaaaad for forgetting my meds. I’m usually very good about taking them. It’s a good thing they provided about 20mg of the antinausea medication as part of chemo at the hospital, or I may not have been able to eat lunch. There was no appreciable difference in my administration-condition regarding stomach upset, though I did feel just vaguely uncomfortable in a very distant way.

Otherwise, my chemo treatment went pretty well. Had a little fun once I realized I could adjust the foot of the bed as well as the head, and had myself quite comfortable once treatment started. I read about halfway through a paperback by a favorite author while I was getting treatment, which was nice.

The next day? I was out most of it. Though I was up between seven and nine that night; there’s an entry on one of my writing logsheets for me starting a new project on that day. I’m not going to say much on it in this post, however, though I will admit it’s my Casi/Vel story.

On Thursday, I had an appointment with my Oncologist, and I was fairly alert for that. Was still draggy due to chemo fatigue, but it wasn’t nearly as bad as the second day after the first treatment, even if it wasn’t as good as it was after my second treatment. Apparently, the severity of side effects fluctuates.

Like the diarrhea. That started the Monday after treatment, and lasted most of the week. Was uncomfortable by the end of last week, but not as tortured as I was after the first treatment’s experience with that week of PottyTime.

Chemo mouth wasn’t as pronounced this time around, either. The most I had was a slight sensitivity to spices and temperature, not nearly as much as after previous treatments. Tongue felt only a little dry, and for a shorter period of time, and I didn’t get any spots on my gums which felt particularly dry. It was more an all-over condition on the roof of my mouth, and not as severe as the spots were.

I have one more chemo treatment, and that’s supposed to happen on the 21st. Following that, I’ll be going in for my radiation setup appointment and then begin radiation. I’ve decided to join the research study they’re performing, so I’m not sure how long I’ll be going in—could be anywhere from three to six and a half weeks. I’ll discuss it more once I know what’s going to happen.

Betrayal

This entry is part 25 of 44 in the series Breast Cancer Posts

I’m generally a pretty cheerful, happy person. I don’t let things get me down. Not even the cancer. There is, however, one thing which hits me every so often, so hard I can’t help but focus on it to the exclusion of all else for a few minutes.

I’ve been betrayed.

My own body betrayed me.

My body developed this cancer. I didn’t ask it to, I didn’t think it would happen, I made no plans for it. I wasn’t prepared for it!

I can’t trust my body any more. Definitely can’t trust my breasts. What if I get another tumor? How will I find it if it’s deep in my breasts? Will I feel it like I did the last one, even if it’s deep within the tissue? What if I don’t feel it? How long will it take me to realize the new tumor is there? How could my body do this to me?

No, I don’t cry. I’m angry. I want my body to be trustworthy. That it isn’t frightens me. Being scared of your own body is no fun. Knowing with a certainty my body could do it again, form another cancer, terrifies me at times.

Even though my BRCA1 and BRCA2 genes are without mutations, those are the only genes they know to look for mutations on. There could be a gene they don’t know about which has influence over my body’s predisposition to cancer. It could, like the BRCA1 and BRCA2 genes, also induce other cancers.

I want to get rid of my breasts. Always wanted to get rid of them anyway, but knowing I got cancer in one of them once already makes me want them off even more now. That’s years away, though. I have to save up for the surgery, and there’s no way I can do it on my current income. I also want a full hysterectomy, for the same preexisting reason I want to remove my breasts, but now also ’cause of the fear I might develop another cancer.

Yes, I know, prognosis is very good for my type of cancer. They got all the cancer out, I’m in chemo, I’ll do radiation, and they’ll put me on hormone suppressants. That doesn’t stop the mistrust of my own body, though.

And it doesn’t stop the fear of it happening again.

Side Effects Update

This entry is part 23 of 44 in the series Breast Cancer Posts

I’ve had my second chemo treatment, and things have been happening a little differently this time. The side effects don’t seem as severe, and there have been some minor changes in them.

I’ve gotten what I’ll call “chemo mouth” both times. In the written materials I’ve received and according to what I was verbally told by my Oncologists, I was told to expect this to happen. Severe cases include sores in the mouth, and may also include either an inability to taste food or a change in how food tastes, including a metallic flavor. I think it largely depends on your chemo drugs. I did not get sores, but I did get dry spots, especially near my teeth. My chemo mouth includes a dry, cracked sensation on my tongue and dry patches in my mouth, I guess as the cells on my tongue and gums are those which are frequently replaced. This begins on about Friday or Saturday following the chemo treatment, and lasts for about five days to a week. I’m at the tail end of it right now. Food’s flavor does not fail or change for me, but my mouth does become more sensitive to hot temperatures and spices in foods. This I imagine is because of the way the cells are sloughing off, leaving my tongue and gums somewhat raw.

My fatigue was not as profound this time. Though I did spend much of Wednesday in bed, I did not sleep the entire time and was actually able get a bit of writing done. Thursday, I had to go to the VA Hosp, and though I wanted a nap, I was able to stay awake and alert the entire time I was there. I went to bed extremely early both nights—before eight o’clock.

This time, I didn’t get the incredible multiple-day headache I got last time. I got a little minor headache pain, which was taken care of by hydrating on Wednesday. No unusual headache pain the following days.

I had a little bit of constipation on Wednesday and Thursday, but did not have to go to the ER over it, and it was gone by Friday. While I have a bit of diarrhea now, it doesn’t seem as frequent as it was last time, and it’s started yesterday instead of on the weekend. There have also been no bouts of incredible abdominal pain which couldn’t be relieved as I experienced last time, which I’m very happy about.

There is a dry patch of flaky skin on the back of my right hand, above the index and middle finger knuckles. This appeared after my first chemo treatment, so I suspect it’s one of the minor side effects.

I have some small bit of hair left, but I expect it to fall out within the next week. My scalp is also very dry and flaky; I’m not actually sure this is a side effect of the chemotherapy, but I thought I should mention it in case it is. In addition to the dry flakiness, I also have some sharp pain in the skin. This isn’t very pronounced unless I’m touching or brushing my head for some reason, so I try not to do it too often despite the itching. I suspect this sharp pain is a side effect of the chemo, because I had none before treatment, and it seemed to begin at about the same time I started losing my hair.

In the Mail

My square dance club is a member of a regional Utah square dance club organization, and I have met very many nice people through this connection. One such person is Angela Mast, who sent me a little something about cancer.

What Cancer Cannot Do

Cancer is so limited . . .
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Sprit

Author Unknown

She sent this with a very encouraging card. The little card is heart-shaped, with a floral design around the edges and the phrase, “A grateful heart knows many joys” in the center. Within, she’s written, “Dear ———: Thinking of you with prayers and love. Make the Journey of your illness with Faith and Determination! Please keep in touch. Love, Angela.”

It gives me comfort to know I am supported in this journey. Now I’m going to call her and tell her I received her card and appreciate the little poem/statement she sent with it.

My Chemo Medication Regimen

This entry is part 22 of 44 in the series Breast Cancer Posts

I’ve been wanting to write up an accurate post about this since my first chemo treatment, just didn’t record anything about the process/procedure at the time. Today I did, with the help of a very accommodating nurse named Allen.

I’m required to take two dexamethasone (Decadron) tablets, with food, twice on the day prior to my chemo treatment to prevent nausea.

Day of treatment, I undergo, in the order written, the following medication administration procedure:

1. Dexamethasone x 5 and odansetron (Zofran) x 2. This latter medication is also to prevent nausea. If they come in liquid form, they are administered over half an hour; after swallowing them with orange juice today, I had to wait half an hour for them to be digested.

2. The nurse then flushed my porta-cath with saline solution to ensure there was proper flow for the administration of my chemo medications.

3. He then administered Taxotere (docetaxel), the first of my chemo drugs, running it through a regulator on an IV stand to ensure it didn’t flood my system. This takes about an hour or so.

4. When the regulator stopped beeping, Allen came back in and did another saline flush.

5. Then he proceeded to hook up the Cytoxan (cyclophosphamide), the second medication of my chemo regimen, also running its IV tube through a regulator. Approximately another hour or so. I received my lunch near the end of this and was able to eat all of it without any adverse effects.

6. When the Cytoxan finished, Allen returned and disconnected its administration tube from the starter-IV tube, flushed my port with saline again to clean it out, then injected a dose of Heprin to ensure blood doesn’t clot in my port. He then removed the IV-starter tube from my port and patched me up with a bandage.

After this, I was free to pack up and go, which I did.

Tomorrow, I’m to take another two-pills-twice of dexamethasone. In addition, I’m free to decide if I’m willing to take the other two medications prescribed for nausea: odansetron and prochlorperazine maleate. Suggested dose of the Odansetron is one tablet by mouth every four hours if needed, and suggested dose for the prochlorperazine maleate is one tablet by mouth every six hours if needed, not to exceed 40 MG per day. If needed, I’m to take these two other pills on Thursday as well.

Then, that evening, I’m to inject myself with Neulasta (pegfilgrastim) to stimulate production of white blood cells. This must be administered at least 24 hours following chemo treatment, but not before then, and since I finished with chemo at around 1 pm today, tomorrow evening is an acceptable range of time for me to administer the injection.

This is the most accurate explanation of my medication regimen I have access to.

After today’s chemo appointment, I had to make an unexpected appointment with my head Oncologist, Dr. Weis (correct spelling of his name, I hope) for Thursday at 2:30 pm. My mom will be accompanying me since she has some questions to ask, and we intend to get what information we can regarding my PET scan’s results from him at this time.

After I got home today, I received a call from the VA to arrange another appointment with Dr. Weis, this one slated for the 9th of January at noon. I’m to go to the Lab for this so blood can be taken, and I half expect to be called to arrange another echocardiogram. This is prior to any further chemo appointments I may be making, and my mom clearly believes this indicates I won’t be getting any more. I am, needless to say, not quite so confident of this. I think this is simply an interim checkup and I’ll be doing at least one if not two more chemo treatments following this January 9 appointment with Dr. Weis.

Yesterday, I received a call from the genetic counselor, and she was able to tell me I don’t have any known breast cancer gene mutation. This does not rule out a genetic connection, but as they don’t know all the genes which affect this particular cancer, she was unable to tell me what I might expect in future. She told me she’d send me the information she had, but it hasn’t come in yet, so I’ll post more on it after it arrives.

After Chemo

This entry is part 21 of 44 in the series Breast Cancer Posts

I should have gotten to this sooner, but I’ve actually been waiting for all the immediate side effects of chemo to wear away and I think they’re finally gone. Now I’ll explain what happened, but please keep in mind, this was only my experience, and others will likely experience slightly different side effects from chemo treatment.

Day of chemo, I was only a little weary, I’m fairly certain more due to the fact I hadn’t slept soundly the night before due to worries over getting to the VA on time to do lab work before the treatment. The next day and the one following (Weds and Thurs), I was much more weary, particularly on Wednesday. I think I spent most of the day in bed, making intermittent efforts to rise and do something at my computer. I’d get up, fiddle around a little bit, then be back in bed within two hours. I did this several times throughout the day on Wednesday, though Thursday was slightly the opposite. I may have spent about half of my usual waking hours in bed on Thursday, and finally began to feel more energetic and like writing by that evening. Friday, the draggy feeling was almost completely gone, certainly not strong enough to send me back to bed. I napped, but I do that about two or three days a week anyway, and the only difference was that I slept for three hours instead of about one.

I experienced very little nausea. On Wednesday, I took one of my 24-hour antinausea pills just to make sure I didn’t get sick, but I never got more than a vague feeling of queasiness. I was able to eat normally, have cups of very sweet hot chocolate, and did not vomit. Thursday, I didn’t take an antinausea pill at all, had the same vague feeling of queasiness, and ate normally without anything worse than the queasiness. Friday, I had a little queasiness, but it wasn’t as strong as previous days, and it did nothing to interfere with my appetite or what I ate.

What I did get was a constant headache. I woke up with it on Thursday, and I attributed it to being dehydrated, because I certainly hadn’t drunk enough the previous day to flush my system of the chemo drugs as I’d been advised to do. Sleeping all day definitely interfered with that goal. The headache didn’t go away even though I went through a pitcher and a half of my favorite caffeine free herbal tea and avoided all caffeinated products. It continued through the weekend and didn’t fade until the following Monday or Tuesday. It was not an excruciating headache, but it settled in the front of my head and even aspirin didn’t do anything to alleviate it. I think now it may have been one of the side effects of the chemo treatment, but haven’t read through my information packet again yet to see if such is listed. Will do that probably tomorrow and try to remember to update this post with what I find.

The information on Chemo I received in my hands and was given verbally at the hospital before treatment included conflicting information on how my bowels may be affected as well. There’s no middle ground with this. Options are diarrhea or constipation. Possibly both. I was afflicted with the first from the Friday following my first treatment through the week following, with one excruciatingly painful evening spent on Sunday of that first weekend when I experienced incredible pain in my hips, which proceeded to climb my spine and fill my thigh bones. I could not for hours figure out what the issue was—I didn’t feel a need for a bowel movement, and all other bodily functions including eating did nothing to alleviate the pain or to cause it to worsen. Not even aspirin got rid of this pain. It began at about three or four in the afternoon and lasted until approximately nine at night and did not begin to decrease until I finally felt a need for a bowel movement and ended up spending the next hour in the bathroom doing so. It was, thankfully, not repeated the remainder of the week.

And, I literally just combed a hand through my hair and ended up pulling out a great deal more than comes out naturally, so I think I’m already starting to lose my hair. According to all the information I received from the Oncologists, both verbally and in writing, hair loss is pretty much guaranteed, it’s just a matter of when. If I lose it now . . . oh, well. That’s the least of my concerns, though I’ll miss my grey hair.

Updated to add: I looked at the information I have for my chemo medications, and neither listed headache as a side effect. Next step is to read through the information I received with my pills. Will get to that by next week.

First Chemo Treatment

This entry is part 20 of 44 in the series Breast Cancer Posts

Had my first Chemo treatment yesterday. It went easier than I thought it would.

When they fetched me to my room, I requested one where I’d either have control of the TV or where there wasn’t a TV at all, as I’m not much of a TV watcher. The nurse kindly brought me to a room with two beds and helped me set myself up with my books and printed outlines and notecards for work on my stories. I’d worn a tank top with good access to the porta-cath and when everything was ready, the nurse inserted a special bent needle into my skin and the port. It hurt a bit, but was quickly gone as she stabilized it. This needle came with a bit of tubing, somewhat like the IV I had for the porta-cath placement, but not so much it got in the way.

Next, she set up the first of my medicines, which was a liquid version of a steroid pill I’d taken the night before to prevent too much bloating. This she channeled through a pump before attaching to my port IV. Once that was done, she fetched me a couple blankets to warm up under and left me for the next half hour while the steroid drained into my body. I laid there with my eyes closed and dozed, headphones on, cause I hadn’t slept well and was rather tired still.

When that was done, the pump beeped loudly, and the nurse came back to switch out my meds. She hooked up the first of my chemo meds, then checked to make sure I was doing well before leaving me to doze again. This took an hour to administer, and I noticed no adverse effects a the time. Nurse came back (can’t recall her name) when this beeped upon completion and hooked up my other chemo medication.

I spent about another half hour dozing with this before they apparently ran out of room elsewhere and brought a woman and her husband in to take the other bed. The woman wanted the news on, so I just turned up my music to obscure the chatter. Not long after that, they brought us lunch, and I ate a fair amount of it. A few minutes later, my last chemo was done, and the pump beeped again. My nurse came back to disconnect me from everything and sent me on my way.

Now it’s the day after, and I’m sitting here with my two antinausea meds in front of me. I haven’t taken them yet; I don’t feel the need just yet. I may after eating. I feel weary, as if I could lay down again, and I don’t think it’s entirely ’cause I want to bed late last night. Tonight, I’m to take an injectable medication whose purpose I’ve forgotten, and I’m not looking forward to that. (LOL)

Porta-Cath

This entry is part 19 of 44 in the series Breast Cancer Posts

Today was porta-cath day. This proved to be quicker and easier than I thought it would be.

I arrived on the Oncology floor at about ten ’til eight, shortly after my visit to the lab for blood work and a quick breakfast courtesy of the VA’s coffee shop. After checking in and having my vitals taken, a nurse showed me to a room with several wheeled recliners (all teal, all ugly, all with mini tables on their armrests) which is typically used for flu shots—I know this ’cause I’ve seen the “Flu Shots Here” signs on the door previously, and the receptionist had directed a woman down to our end of the hall for one. Nurse Mary passed me a hospital gown and robe, told me to take off my shirt and bra, and to put the gown on the proper way so it was open in the back—the first time since starting this trek through cancer care I’ve been specifically told to don the gown that way. So I did, not wishing to upset her. Once I’d changed, she returned and put an IV line in my left hand; this wasn’t a full IV with the stand and all, but a shorter line which would later be attached to various things on such a stand. After checking to make sure it would flush okay, she told me to hold my hand slightly bent in so I wouldn’t kink the line and sent me down to Angio.

The trip to Angio involved a walk to the elevator, going a floor down, and following a blue line all the way around back of the radiation section. There, in a cool room with a table which had an X-Ray panel above it, I was prepped for the insertion of the porta-cath.

First, they had me take off my necklace, then had me lay on the padded table below the X-Ray panel. This table had controls they could use to move it lengthwise up and down, or vertically up and down. I got up on the table with little difficulty (even at its lowest point, it was still fairly high) and laid down, scooting up the table until my head was on the pillow. They put my arms on plastic armrests they had to attach to the table, and I told the nurse on my left side about the requirements for enabling my IV line to work and he made sure I held my hand properly. They had me remove my right arm from my hospital gown, and attached a blood pressure cuff to my right arm and an oxygen reader to my right index finger.

They did not sedate me. The nurse on my left started a line of liquid antibiotic in my IV and the lady nurse ensured my right breast was at least partially covered then, upon realizing its size (DDD at least), suggested they tape it down. I still chuckle over this, because they did indeed tape it down, using three long strips of tape crossing my body from the right arm support to the left arm support. They had to do this so the doctors would be able to access the location they needed to place the catheter line under my skin.

Sometime around this point I suggested they take my glasses, and one of the nurses told me to turn my head to the left. The nurse who’d managed my IV line fetched my glasses from my face and I obeyed the command while someone scrubbed my skin and neck with antiseptic—I forget what it was. While she did this, one of the doctors came in with music and set it up to play. After washing my skin, two of the nurses covered my body in blue surgical slips, one of which completely covered my head; the nurse who was still on my IV lines hooked it up to the IV stand so I could “see” out. Without my glasses, I didn’t see a whole hell of a lot. (LOL)

Now the Doctor and a Fellow came to my side. My right side. I asked why it was so important they put the cath in my right side, and one of them explained it was because the vein is straighter on the right. Then he told me what they were going to do was inject a numbing agent in my neck and in a line down my chest to where the port was being inserted. This involved much use of an ultrasound machine and a couple flickers of the lights to use the X-Ray panel above me.

They explained what they were doing before and during the procedure, but what basically happened was they nicked my neck—and blood ran around the back of my neck, into my hair—did their line of numbness from there to the insertion point, which felt like a series of bee stings, and . . . pushed the porta-cath up that path they’d designated, over my clavicle, and inserted it into my vein. The catheter developed a kink, so throughout a series of lowering the lights to use the X-Ray panel, they got the kink out and the Doc left the Fellow to suture my wounds. He did two layers of sutures on my breast wound, where the port is, and one or two stitches in the wound on my neck.

Someone did their best to mop up the blood which had run around the back of my neck and detached the blood pressure cuff and oxygen monitor. Then one of the nurses peeled the tape off. That hurt worse than anything else. They righted my garments, disconnected my IV line from the bags on the stand, and helped me get to my feet, passing back my glasses and the necklace they’d had me remove prior to the procedure. Quite alert and able to take care of myself, I refused the offer of a wheelchair trip back to Oncology and walked out to pick up my mom on the way.

Back in Oncology, Nurse Mary removed the IV line and had me get dressed, which I did quickly, spending a couple minutes to rub as much of the blood off my neck as I could. The Angio Fellow and Doc had told me I’m not to shower for two days, at which time I can remove the dressings. I’m also not to soak in a tub of water, which I don’t do anyway.

I left the hospital around ten thirty in the morning, and now, at about three thirty, long after the numbness has worn off, I’m experiencing discomfort. There’s a bit of sharp pain which isn’t bothersome around the point of the port, which is right above my breast, just where the flesh begins to rise for it. My neck has some dull pain, and since it tenses the muscles there to swallow, eating and drinking causes some minor discomfort, but it’s not so great it’s prevented me eating or having anything to drink. The muscle on the back of my head where it connects to the back of the skull got slightly pulled with me keeping my head facing left during the procedure, so that causes some discomfort as well, but, again, it’s not enough to stop me doing anything. It hurts my neck slightly to turn my head either way, though it’s not excruciating—again, level of discomfort mostly; kind of like waking up with a kink in the neck and not being able to turn your head too far, though the “stopping point” in this is not nearly as painful as it can be with a kinked neck. The entire line from port to cath in my neck is tender—yet not so bothersome I’m screaming in pain. (LOL)

I expect to regain full, painless freedom of movement within a few days—a week at most as Nurse Mary and the team who inserted the porta-cath seemed to think the procedure wasn’t too difficult to manage or deal with. The Doc and Fellow told me to take Tylenol or ibuprofen to alleviate the pain which was a relief. I don’t know what I’d do with another scrip medication! (LOL)

PET/CT Scan

This entry is part 18 of 44 in the series Breast Cancer Posts

I swear I still have the flavor of the barium sulfate suspension at the top of my throat.

I had to drink 900ML (approx. 30.4 oz.) of it for my PET/CT scan today. My appointment was at ten, but I arrived about half an hour early (’cause I could, since Mom wasn’t with me to complain about arriving too early and having to, oh, dear, wait), and they got me in for the scan a good fifteen or twenty minutes early (because they could since I was there early and the room was available—this is why I choose to arrive early, especially to cancer treatment stuff—earlier in, earlier through whatever procedure it is, earlier on my way HOME End rant).

I told the nurses/techs/not-quite-sure-what-they-were I’d brought a pair of sweat pants because the paperwork I received yesterday stated specifically I should wear loose-fitting clothing without metal. I don’t wear sweats during the day (unless under jeans for warmth in winter), because it’s an important mood boost to dress in day clothes, and sweats make me feel depressed. The techs nodded, saying they understood completely, and led me to a locker room with a single chair in it with further instruction on how I should dress. So, after removing my bra and putting my tee shirt back on, I pulled on my sweats, totally ignoring the hospital pants draped on the chair—which I knew wouldn’t fit, so didn’t even bother trying them on.

When I stepped out, they showed me to a little room with one of our VA’s unattractive recliner chairs. This one happened to be teal, and it had little oblong tables attached to the arms, one of which was covered in what looked like a puppy piddle pad. They laughed when I called it that, and one of the girls said, “yeah, they do look like that.” I sat, the one who I guess must have been a nurse despite her everyday attire covered me up, and the other set out the various accoutrements of an IV line on the right hand (the covered) armrest table. I let Nurse get as far as wrapping the band around my arm before making a comment about it being the arm with the neuropathy, and the one who’d covered me up (who I’ll call Tech) said, “Yeah, that’s the arm she had the surgery on, maybe you want to do the IV in the other one.” So she did, thank goodness.

The IV was quickly placed while Tech went to fetch the radioactive tracer. Nurse injected the tracer, then went around the back of the chair to fetch the two tall bottles of barium sulfate suspension they wanted me to drink (so my digestive tract could be seen better in the scan later), then Tech asked if I was comfortable and told me they’d be back in about an hour and fifteen minutes to take me to the scan.

They left me alone in a dim room, facing a clock which the one recessed light left on illuminated perfectly. I spent the time swallowing the barium sulfate solution, which had a prominent citrusy scent but rather bland flavor either watching the minutes passed or simply sitting still with my eyes closed. At one point, I heard an tone sound, then a male voice declared, “Building One. First Floor. Zone C.” This was repeated over about ten minutes, with the tone then the three announcements. At one point, a guy poked his head in and said, “Oh, it’s nothing to worry about, just a fire alarm in another section. It’s probably a mistaken pull or something.” I asked where Zone C was, and he told me down the hall a ways and if it was necessary for me to leave, they’d be by to tell me so, then he left. Not long after that (about a quarter after eleven), Nurse and Tech fetched me to go to the PET/CT machine.

This machine (unlike an MRI machine), has two open ends, and Nurse and Tech had me climb onto the table extended from the “bottom” end, placing my head at the end closest to machine. While Nurse connected my IV to the contrast dye injector, Tech tucked me under more blankets, making sure to snug my feet well. Nurse hooked the tube to the injector around my thumb, then told me to raise my arms over my head. She stepped aside, and the table slid into the machine up to about the point of my neck. A male voice told me to breathe in and hold my breath, so I did, and it was followed by a scan, my body moving deeper into the PET/CT scanner tube. It stopped, moved me back out, and told me to take another deep breath and hold it.

After this second arms-above-my-head scan, The table moved all the way out and Nurse asked if I was wearing a necklace. I was. We got it off my neck, and the scan continued.

The remainder of the scan involved me laying very still, with my arms held to my sides by a large wrap which was connected to the table. It crossed from right to left and was held by Velcro on the left side; the IV tube from the dye injector was still hooked around my thumb, and exited out the “bottom” edge of the wrap, which covered me from abdomen to hips.

Before they injected the contrast dye, Nurse warned me I’d feel a hot flash and have a funny taste in my mouth. “Hot flash” was an understatement. It felt uncomfortably hot, as if I’d been out in the sun on the hottest day, dressed all in black, with a humidity of 100%, only I wasn’t sweaty after. It lasted perhaps five seconds. I didn’t get the funny taste, but the injection of the dye did cause a liquid-at-the-top-of-the-throat sensation and made it feel like as if I’d wet my pants, though I hadn’t. It was the only time I did not feel slightly chilled in that room, because they had fans going to keep the machine cool.

Then they did more scans. At one point, they stopped the table so my head was just at the other end of the tube, and I spent the five minutes my head was right there trying to read the stickers beside each of the three black rectangles—one on either side of my head, one right above me. Since I’m horribly nearsighted, and the print was small, it took me almost the entire time my head was there to puzzle out, “Laser Aperture. Do not stare into the beam,” at which point it made me very glad they hadn’t turned those lasers on. Then again, if those had been on like the ones at the other end, I wouldn’t have left my eyes open (LOL).

Not long after that, they completed the scan and the table ejected me from the “bottom” of the PET/CT scanner. Nurse removed my IV and bandaged me up, and they took me back to the locker room—they had to show me because I was very disoriented after my experience. Tech told me she got confused, too when she first started working. Back in my proper day clothing, I returned to the corridor and Tech showed me the way out, complimenting me on my cooperation.

After the PET/CT scan, I had a quick lunch and went to visit Nyna so she could write out my Chemo calendar; my first Chemo appointment is set for the 19th at nine in the morning after an eight o’clock visit to the lab to draw blood.

Older posts Newer posts

© 2018 Ashe Elton Parker

Theme by Anders NorenUp ↑