Ashe Elton Parker

A Writer of LGBTQ+ Characters in Speculative Fiction

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Genetic Counselor’s Advice

This entry is part 11 of 44 in the series Breast Cancer Posts

Yesterday’s appointment with the Genetic Counselor went pretty well. She previously got what I knew of my family health history over the phone, and that ended up having a bearing on what she ultimately told me.

We had to meet in the Women’s Clinic of the VA Hospital because the genetic counselors don’t actually have offices anywhere in the hospital itself. Though genetic testing services have been offered for about three years to VA health care recipients, their home offices are actually elsewhere in the city. And, Salt Lake City, Utah, is the only place where the genetic counselors actually see the patients they’re assisting. Every other VA health care center in the us offers the genetic counseling, but only by phone.

Makes me happier than ever I ended up moving here instead of Denver, where I originally wanted to be.

I’m not sure how to spell the genetic counselor’s name. It’s either Ann or Anne. I’ll go with Ann for the post and correct myself if I learn differently later.

She took me back to one of the clinic’s exam rooms, and we sat down. We went over my family history again, and I was able to fill in a few more spots about my mother’s side of the family, but could only repeat that my father died of heart problems in his 40’s and smoked and drank. Ann explained that the total blank of history from my father’s side of the family inclined her to suggest I have the genetic test for the breast cancer gene done. She said, combined with my youth—most women get it in their later years—it made getting the test a good idea. It would give me either peace of mind, or enable me to determine a course of action I could take to prevent further occurrences of breast cancer.

In the course of our discussion, Ann told me the test could have three possible outcomes. Most likely would be, No, I don’t have the gene. Slightly less likely would be, Yes, I do have the gene. Third, and least likely of all—at five or less per cent—was I have a mutation on another gene which they’re not sure indicates breast cancer, but it’s cause for concern anyway.

To explain: The two breast cancer genes they know of are brca1 and brca2. There are specific places on these genes which sometimes mutate, providing the possibility for breast cancer and ovarian cancer. There are a few other genes, which she didn’t name, which may cause breast cancer, but they’re still uncertain, so while they do look at these genes in genetic tests for breast cancer, they can’t provide a definitive answer on whether or not a woman will get cancer.

As I said, Ann told me the most likely response would be No, I don’t have the gene, but she said the complete lack of health care knowledge about my father’s side of the family made it a very good idea to get the test.

I opted to take the test. My next appointment, with Oncology, is on the 7th of November, and before I see the Oncologists, I have to have blood drawn and an electrocardiogram done. Ann said she’d put the order for blood to be drawn for the genetic test to be drawn with the other order, and that I’m to expect the results in two to four weeks from the test.

I’m a little scared.

Bits and Pieces

This entry is part 12 of 44 in the series Breast Cancer Posts

I have a few things to say here. May have said some of them before, but I thought I’d try to go into a bit more detail about anything like that.

Such as the numb area of my arm. Today, I can tell it goes around to my back a bit. Its borders back there tend to fluctuate, I think depending on whether or not I’m having other sensations. Like itching. Itching is fun. Neuropathic area itches, reach to scratch, realize area to scratch is actually numb to the sensation of touch, so can’t actually scratch the itch. Sometimes those itches settle in the edge of the numb area, where the one I’m trying to ignore right now is. This is a mild annoyance, and not as traumatic as the sensation of pain which sometimes crawls through the neuropathic area. Sometimes this pain comes on its own, sometimes something I do (usually moving my arm up so my hand is somewhere at head level or above) causes the pain to come. This generally strikes the back of my upper arm, is fleeting, but is shocking at times when I least expect it. Other times, it’ll come in and hover for a while.

Really, I’d rather have this than cancerous lymph nodes.

The steri-strips are still on my armpit and breast. The ones under my arm are peeling off at the ends and bunching up toward the middle, right over the wound from the surgery. I think it’s this which is causing the bruised feeling in my armpit, and the sticky areas keep catching on hair growing and pull it without warning, usually at night when I’m laying on my left side. Move right arm to more comfortable position, pull hair.

This is not to complain, exactly. It’s not that much to have to deal with. Just thinking there might be someone out there who might want to know about all the little discomforts which come with cancer treatments.

Yesterday, I received a call from Robin (a nurse, not Robyn, the Physician’s Assistant who came with my surgeon). She wanted to discuss the order Dr. Weiss, the head Oncologist, put in for something called a “porta-cath.” I think that’s what it was called. It’s something they insert under the skin of the chest for long-term chemo treatments, and she said it made sense they ordered it if I’ll be getting such treatments for a minimum of at least four months. It makes administering the chemo drugs easier and less stressful on the body—she said it can be rough on the veins if doing it through an IV. I have to go in at 7:30 in the morning on the 15th of next month for a fasting lab (whee, no eating/drinking after midnight) and report to the AMU clinic for the porta-cath to be inserted. According to Nurse Robin, they’ll sedate me for the procedure, so I’m going to take Mom with me so she can handle the cab. Also according to Nurse Robin, the sedation will wear off after a few hours and I’ll definitely feel like they’ve done something, but it shouldn’t be too painful. We’ll see about that.

If I find out they’re not doing the chemo long-term, I’m to call and tell Robin, and they’ll arrange to do something slightly different. Something about having a tube hanging out my body, and dressings which need to be changed, with a lot of care required. This enthuses me no end, I assure you, so I’m kind of hoping to do the porta-cath instead.

Robin was most displeased I recalled nothing of this being discussed during my last visit with the Oncologists. I could have heard something about it, and it may not have stuck, but she said it was up to them to make things clear, and she was upset I hadn’t received the printouts they promised. So, I’m kind of hoping my visit with them on the 7th turns out to be nothing more than me getting those printouts and hearing again what they’ll be doing, and maybe getting a firm answer on just how long and how frequently I’ll have to be in for chemo.

Today I got the letter the genetic counselor, whose name is spelled “Anne,” sent me. I’m glad she didn’t take her time about it. I have the distinct impression she got back to her office last Friday, prepared all this, and had it in the mail by the time she left the office for the day.

Some interesting facts from the letter she sent me (I haven’t read the printout from a cancer center’s website she gave me yet. Can’t bear to look at that bit yet).

-Most cases of breast cancer are sporadic (not due to inherited factors).
-Approximately 1 in 8 women will develop breast cancer in their lifetime.
-A combination of factors can contribute to development of breast cancer (including smoking, unhealthy living).
-Simply getting older can cause breast cancer—most women who develop it are over 50.
-Approximately 5-10% of breast cancer cases are thought to be caused by inherited predispositions.
-Changes in BRCA1 and BRCA2 can also lead to an increased risk of other cancers, including ovarian cancer.
-In some families, a specific genetic change can’t be identified, but many members do develop cancer (more than expected by chance). In such cases, it’s considered familial, though they can’t identify the specific cause.

Once again, she iterates I should get the genetic test because of my complete lack of knowledge of health history of my father’s side of the family and my young age (39-40) at developing it. She’s going to call me before the 7th to make sure I do want the test, then put the order in for the blood for it to be drawn at the same time I have it drawn prior to my visit to the Oncologists on that day.


This entry is part 13 of 44 in the series Breast Cancer Posts

HBOC stands for Hereditary Breast and Ovarian Cancer Syndrome. I learned this from the information packet the genetic counselor sent me, which can also be found on MD Anderson Cancer Center. The first link I provided will take you directly to the pamphlet; the second link will take you to the site it’s on. The whole pamphlet is printable. I feel reluctant about including any of the information word-for-word here because it’s copyrighted, and, as a writer, I’ve grown rather sensitive to copyrighted materials and their usage. The pamphlet isn’t very long. I’ve also added the link to the cancer Center to my link list on the right.

Yesterday, someone at the VA called me to set up a radiation evaluation appointment up at the Huntsman Cancer Institute. I’m not sure what all is going to happen during this evaluation, but I suspect they’re going to identify the areas they need to radiate and determine a treatment plan. Even though I may not be going in for radiation treatments for a number of months, they like to set this up ahead of time so treatment can began as soon as they can with as little hassle as possible right after chemotherapy. I’m to be in by 8:30 for my 9:00AM appointment on Tuesday Nov 5.

Side Effects of Surgery

This entry is part 14 of 44 in the series Breast Cancer Posts

I know one thing which is a side effect—and drives me absolutely batty when I go to bed—is the fact I can’t lay on my right side any more. Trying causes a great deal of pain, in both my arm and the edge of the right side of my back, where some of the numbness crawls around. That spot isn’t bothering me much right now; I can actually feel where my bra crosses the area, and where my shoulder strap comes up back there. Sometimes I can’t feel these things due to the neuropathy. This is a definite side effect of the surgery, because, from what I understand, they had to cut a nerve under my arm, and it apparently affects this area in addition to the back of my arm.

What I’ve noticed just the past few days, as underarm discomfort fades since the lumped-up steri-strips have come completely off the healed-up wound in my armpit, is a bruised feeling which extends down the entirety of my arm from the armpit. There are even some faint bruises, I’m guessing left over from the surgery, because I haven’t done anything or been touched where they are (near the inside of my elbow, and just above). It almost looks like someone grabbed my arm and dug in with the full length of their fingers. It hurts to stretch or raise my arm, but not as much as it did when I had the JP drain in. As I said, just a bruised feeling, and the “no, you don’t want to do that too much” feeling from it.

Good news is that the JP drain entry point is nicely scabbed over, and the surgical wound under my arm is well-healed, though a little purple. The cut in my breast is very well-healed; it’s just a pink line right now, though I do still feel some residual pain if I move it too much or press into it, probably due to the stitches under the skin. Sometimes my breast will throb with pain for a few seconds, but it always passes, and usually happens in response to me doing something to cause it, like press my folded arm against my breast. Some few of the steri-strips have come off my breast, but most are still quite well attached. I may peel them off next time I shower so when I visit the Oncologists again, they can see my skin’s healed up there.

The other day, the I got a call from the VA to set up an echocardiogram appointment. I’m to report for the appointment at ten AM. It’s supposed to be a fasting test, which will just be totally wonderful (LOL), and I’ll get to eat lunch afterward, then go do the blood draw they want. After that, I get to spend about two or three hours hanging about because there’s no point in trying to come home when I’ll have to turn around and go right back up to the VA for my three o’clock appt with the oncologists. I’ll definitely be taking books and music. Not sure if Mom will want to come, but I’m thinking not. If she does, she’ll probably come up just before the Oncology appt so she doesn’t have to spend all day at the VA like me.

Scars and Stuff

This entry is part 15 of 44 in the series Breast Cancer Posts

I would not have noticed the lump in my breast if it had not been right beneath the skin. In fact, I didn’t notice it for quite a while. The lump seemed kind of large to me, and the fact it had already attached to a lymph node gave me the impression I’d been feeling the lump and assuming it was my nipple being hard for a lot longer than I’d like to admit. I was not doing active breast exams, but I can tell you, finding this cancer has definitely galvanized me to do so.

The lump’s position on my breast was at about ten o’clock when facing the breast, right beside the areola. Now, since the surgery, I can feel the stitches put in to pull the remaining tissue together so I won’t have a void where the cancer was. My nipple is about half-submerged now, due to the pulling of the surgical scar; I don’t know if this will correct itself over time. It’s also a little off-center—my nipple now points in a slightly right-hand direction instead of down. It makes things like folding my arms very interesting now, because it’s right at the point where my arm bends when I do so.

I measured my scars today, too. Just to give y’all some idea what’s there:

I took the remaining steri-strips off my breast scar. It’s approximately four inches long, and is somewhat vertical, edging the areola. It directly bisects the ten o’clock position where the cancer was. A month following the surgery, it is now pink and looks well-healed.

The underarm scar is at least three inches below the point where my arm bends, and is approximately two and a half inches long. A month after surgery, it is slightly purple but well-healed. It feels swollen in that area and higher up under my arm, but it may actually be me feeling interior stitches which haven’t dissolved yet, or part of the neuropathy side effect from the surgery.

Approximately one and a half inches below my underarm scar is the JP Drain scar. This is perhaps half an inch wide and pinkish, well-healed. It no longer itches and when I get goose bumps, it doesn’t hurt as it did before (lots of shivering recently as it’s getting colder).

I have cancer-stuff appointments next week. Tuesday, I’m going to the Huntsman Cancer Institute for radiation prep and on Thursday I’m going to the VA for various tests and to see the Oncologists again. I’m not sure what the radiation prep appointment will include, but I imagine it may be an introduction to radiation therapy and a discussion with the doctor about my condition/status. I called the VA to ask what the Oncology appointment would be about and was told I’d get information on Chemo and how to deal with it and that they won’t start Chemo until after I’ve had two or three appointments with the Huntsman Institute about my radiation therapy so they could coordinate care prior to starting it. Apparently, this system is slightly less cumbersome if one is receiving all their cancer care up at Huntsman (LOL).

Radiation Consult

This entry is part 16 of 44 in the series Breast Cancer Posts

This morning, I rose at 5:30 AM for my appointment at the radiation clinic up at the Huntsman Cancer Institute. I missed the train I could have caught if it hadn’t taken me twenty-five minutes to walk up to the commuter train, but had left two hours ahead of the time they told me to be there—8:30AM—so I still had plenty of time to get up there before I’d be considered late. I actually arrived about five after eight, and they had me fill out a bunch of forms relating to my health history, emergency contacts, and whether or not I had a Do Not Resuscitate order somewhere. I did this standing at the counter, because sitting and trying to fill out a form with my hand falling asleep would have taken longer because sitting would have put the clipboard in my lap and required my wrist be slightly bent. The secretaries were quite willing to let me do as I wanted to fill out the forms because I did so at an out-of-the way spot.

I didn’t have long to wait after I finished the forms, and was taken back for vitals and to be shown to the room where my radiation therapy doctor would see me. At the Huntsman, they have seven doctors, and eight little swinging pointers connected to the wall beside the outside of the clinic doorways to indicate which doctor should visit which patient (the eighth is to indicate the room should be straightened up, iirc). I was told to undress the upper half of my body, don the nice plus-size hospital gown (the VA has a severe lack of these, so I’m always happy when another doctor/clinic I go to has them), and wait for the doc. I sat in one of the extra-wide chairs instead of the exam bed and read a new book.

I didn’t see my attending physician right away. A Resident physician and a Student doctor came in. I say it this way because the Resident was very much in charge as he went over my history and the forms I’d filled out with me, and the Student Doctor was very quiet until he prompted her to ask any questions she had. She was apparently very new to clinic visits like this.

Resident Doc (I’ve forgotten his name, sorry, and his business card has not been included in the paperwork I received as I was told it would be) had me hop up on the exam table. It’s couth in breast cancer care like this to put on any hospital gown they give you backwards, so the opening is in the front, and I had done this. Resident Doc performed a typical physical (not using a hammer to test my knee reflexes, for which I was glad—his finger-tap was just hard enough to elicit the proper response without causing pain), then had me lay back for yet another full breast exam.

You get a lot of full breast exams when you’re in breast cancer treatment, because all the doctors you come into contact with want to “see” for themselves the condition of your breasts.

He started with the left breast, pressing hard. Then he palpated my armpit with equal force, which tickled and made me laugh. When he was done, he moved to the right side as the Student Doc did an exam on my left breast for learning purposes. When Resident Doc got to my right armpit, he pressed hard enough to tickle, and I laughed again. Student Doc followed his example, her touch a little firmer than before, but still not hard enough to tickle me.

This done, Resident Doc had me hop off the exam bed and sit, and he and Student Doc departed to fetch my attending physician, Dr. Poppe (pron. poppy). I find it interesting that he turned out to be growing a beard. Mostly because his first name is the same as my Psych Doc and my Psych Doc also grows a beard in winter. However, the two could not possibly look more different.

Dr. Poppe had me hop onto the exam bed again and I got another breast exam. He pressed as hard as Resident Doc had, which made me laugh, and, at one point when he was on my right side, said “You’re funny.” Then, he palpated my abdomen, which made me laugh harder, and he asked Resident Doc and Student Doc if they’d gone through this too, which they of course verified, which induced Dr. Poppe to once more tell me I was funny. (I’m still chuckling over this whole thing.) I think I must have been Dr. Poppe’s first patient ever to be ticklish.

After this breast exam, I once again hopped down and returned to my seat so Dr. Poppe and I could chat. He said Chemo is done first, for anywhere from three to four months, then the patient comes in for Radiation Therapy for six and a half weeks, 20-30min a day weekdays. However, there’s a national clinical study being done with breast cancer Radiation Therapy, which, if I decide to participate in, will have me going in either three weeks or four and a half weeks. They’re trying to test the efficacy of shorter treatment periods. I’m not sure if that means I’ll be getting stronger doses of radiation or not.

At the end of this chat, Dr. Poppe gave me an information packet on Radiation Therapy, including a calendar of events happening at the Huntsman, and told me he’d fetch the paperwork regarding the clinical trials for me since I’d asked for it. Then he, Resident Doc, and Student Doc departed. I read a bit more while I waited, and the head of the clinical trials at the Huntsman came to give me the paperwork promised. She was kind enough to show me out as we chatted about breast cancer treatment in general.

I haven’t gone through the Radiation Therapy information packet yet, or even the clinical trial paperwork. I plan to do so by this weekend at the latest and will post about it once I have read the information.

Day at the VA Hosp

This entry is part 17 of 44 in the series Breast Cancer Posts

I had another full day up at the local VA Hospital, at least half of it spent waiting, either for appointment times to arrive, or for doctors/nurses to meet me once I was there. If I’d come home during the day, I’d have had to turn right around to go back up, so it was easier for me to take books and stuff and my music and read while I was there.

My first appointment was for the echocardiogram. For this, I had to undress halfway, and a technician used a sonogram machine to take readings and recordings of my heart’s activity. He took readings from right above my heart, through the breastbone, did some work under my arm against my side next to my left breast, and then at the point right below the breastbone, which required him pushing up and in. Most of it was uncomfortable, though it hurt a bit when he was on my chest with the sensor because he had to press up into the soft tissue of my breast. The part which hurt the most, and it was primarily at a level of great discomfort, was when he took the reading with the sensor under the end of my breastbone. He also had to hook me up to, if I remember correctly, an EKG machine to monitor my heart in order to tell the sonogram machine when to record my heart’s functions. We had a nice chat about everything, including his path into sonography, while he did this, so I was quite distracted for much of the procedure. This took approximately an hour.

After this, I went to the lab for the blood draw. Very nice technician there answered all my nosy questions about the vials and where the blood was going (tests for the Oncologists and for the genetic testing). I always ask them to use a butterfly needle when they draw blood because sometimes them switching vials out on the standard needle with the vial holder jerks too much and causes minor pain. This woman’s touch was very gentle, she was very thorough, and when she removed the butterfly needle, I barely felt it. She also managed to get blood from the main vein in my arm—the one in the middle of the elbow pit—instead of the peripheral vein on the outside of the elbow pit when the arm is turned up for such a blood draw.

Then I had lunch. I should say there was some confusion over the phone when I was told about the echocardiogram; the nurse arranging it for me told me I needed to come in fasting, which, it turns out, is for a slightly more invasive procedure which involves them putting a tube with an ultrasound sensor down the throat, which is numbed prior to this. I was told also I needed to bring someone because I may be drowsy from this if they had to further sedate me, so Mom was with me up until I finished lunch.

Then Mom went home, and I went up to the AMU section where the Oncologists are and sat reading while awaiting my 3PM appointment with them. At about forty five minutes before my appointment, the receptionist at the counter asked me if I’d done my PET/CT scan follow-up yet.

What?! I hadn’t even been to that section of the hospital for an initial appointment yet.

Turns out, she meant if I’d made an appointment for it yet. That made more sense, and she told me to go make that appointment right then. This is, I think the result of my talk with Dr. Poppe from Tuesday. It’s good to know the VA is on the ball. Down in the Nuclear Medicine section of the hospital, I made my appointment for, guess what? Tomorrow! I’m to go in at ten for the PET/CT scan, which will take anywhere from two to four hours according to what I understand.

I made it back to the Oncology unit with time to spare before my appointment and checked in, had vitals taken, and went to the room instructed to wait. And wait. I read more of the book I’d brought, but also took the time to read the PET/CT paperwork the receptionist there had given me. A Resident finally came in, and we discussed things briefly, and she left. Then Nyna, the head Chemo nurse, came in and we talked much more. She had a little notebook with a lesson on breast cancer and a folder with paperwork for me to read. I saw Dr. Weiss briefly again, and he gave me a more thorough explanation of Chemo and the regimen they had planned for me.

I’m apparently to receive the “easier” Chemo regimen. This involves two drugs (down from three), and has been chosen because I had only one cancerous lymph node out of fourteen removed and they got all the cancerous tissue from my breast. They had me sign a release form, then I went back to the room with Nyna to further discuss my upcoming appointments.

They wanted to give me my first Chemo treatment on the 15th of this month . . . the afternoon of the same day I’m to get the Porta-Cath put in. I asked to change the date, and we moved the first Chemo treatment to the following Monday—the 18th. Next week is going to busy and pretty stressful, and I didn’t want to get Chemo right after undergoing a minor surgical procedure which would leave me groggy for at least part of the remainder of the day.

Then I was free to go, and boy did I hotfoot it out of there.

So, for tomorrow: 1. 10AM PET/CT scan; 2. Visit with Nyna about Chemo calendar and other sundry topics needing to be settled (for instance, what I do and when I do it for the Porta-Cath placement); and 3. Go to pharmacy to pick up anti-nausea meds so I have them on hand when the Chemo starts. I figure I should be up there all day (LOL).


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.


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)

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)

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