Ashe Elton Parker

A Writer of LGBTQ+ Characters in Speculative Fiction

Series: Breast Cancer Posts (page 1 of 5)

The Beginning

This entry is part 1 of 44 in the series Breast Cancer Posts

I found the lump in my right breast in the wee hours of 6 August 2013.

Oddly, realizing it was there didn’t keep me awake that night. I’d discovered it while laying in bed, and I told myself, “I’ll email my primary care doc directly tomorrow when I get up.” If you’re a veteran, and you’re getting care at a VA hospital, they encourage you strongly to sign up for the VA’s veterans’ health care site, (I’m not linking it because it would be useless for pretty much all readers here; suffice it to say the site enables you to contact your care team, do things like record food intake and exercise, and order prescription refills). Normal procedure, since my primary care doc works primarily for the University and its hospital and sees VA patients only on Thursday mornings, is to use the site to send a secure email to my doctor. Problem with this when I found the lump was that the email goes through her nurse, and she might not get the message until she got to work on Thursday, and I needed to tell her as soon as possible. Luckily, my primary care doc had given me her business card, with her direct email address, so I used this.

A week after the Thursday following my discovery of the lump, I was at the VA to see my doc on a squeeze-in appointment. First an intern did the breast exam thing, then my doc came in after I chatted with the intern, and my doc did another exam and we discussed what would be happening.

Next step happened to be getting a mammogram, and I got an appointment up at the Huntsman Cancer Institute, taking over a spot left by someone else’s cancellation. There, I had a mammogram, which led into an ultrasound, and then a biopsy of the lump in my breast and one they discovered on the lymph nodes under my arm. The biopsy was a relatively simple procedure complicated slightly when doing the breast lump because I’d given permission for a resident doctor to perform it (because the guy has to learn somehow). Overall, the procedure was faster and easier to endure than I would have expected.

I went home that day (it was another Thursday), and cried. Having the biopsy, and especially after all I learned and saw about my lumps while I was there, brought home the possibility of cancer. Until that point, I’d been able to get by with the thought it probably wasn’t cancer. But after hearing the doctors and assistants and technicians attending to my care discuss the fact the lump was not regularly-shaped and was solid and firm, not squishy or as if it were full of liquid, and, especially after discovering the lump on my lymph nodes, I couldn’t help but assume it was in fact cancer.

The Next Step

This entry is part 02 of 44 in the series Breast Cancer Posts

By the Monday following my mammogram appointment, I had a diagnosis of cancer.

The result of this was things kicked into high gear on the VA’s end of things. Within a week, I got to see my surgeon. I think I got really lucky with this appointment. I saw him on a day he usually doesn’t see patients, right after a meeting. His Physician’s Assistant left the meeting early, and we spent about twenty or so minutes with her alone, outlining what to expect of the visit with the surgeon. I remember her first name was Robyn (could have misspelled it). When my surgeon, Dr. Savarise, joined us, my mom, who’d accompanied me to the meeting, started asking him questions she hadn’t gotten to with his assistant. He spent at least forty-five minutes to an hour with us. During his visit, he detailed the procedures I’d be undergoing in surgery, helped us with any questions we had, and generally eased my mind a great deal with his willingness to sit there and be pestered. I feel I wouldn’t have gotten this time if it had been a typical clinic day for him, and he was able to assure me he did this procedure every day up at Huntsman Cancer Institute. That reassured me a great deal, along with his physical appearance: dark hair greying at the temples, crinkles around the corners of his eyes. He’s not some young doc coming in and telling me what’s going to happen, he’s someone who is experienced and knows all the variables which may be expected during such a procedure. By the time he left me to finish up with Robyn, I felt very confident in his abilities and comforted by his patient and informative character.

After the meeting, Robyn gave me a Guide to Your Surgical Experience flier and a red day-glow list of places in the hospital to visit prior to my surgery, preferably the next day. As I had to see the Oncologist the next afternoon, I went to the VA early to perform this errand run. I also happened to be able to get my flu shot since the VA had them available and I had the time; the last thing I’ll need later on this fall is to come down with the flu in the middle of chemotherapy. Then, all errands done, I waited out in the main lobby for Mom to join me for my Oncology appointment.

Mom and I arrived at the Oncology department a little before the appointed time of Noon. After we were shown to a room with a hospital bed (covered in fresh pee pads for some reason), we waited for approximately half an hour. The Oncologist who arrived was not the one we actually had been told we were to meet, but someone else. I’ve forgotten her name. She sat with us for about half an hour or so and talked with us, explaining the differences between Stage and Grade and what my likely path through cancer treatment was to be. When she finished, she hunted down the woman I’d been told we would meet, who popped in for about thirty seconds before hurrying off to wherever she needed to be. Then the first Oncologist went off to find the head Oncologist.

Now, here, I’d like to say that when I got back from my appointment with the Oncologists, I wasn’t in any way ready to discuss much about it. I was, however, willing to talk about the people I’d met, and I likened them to various animals, much to the amusement of my writing friends at Forward Motion for Writers. All my chat friends were in, and I likened the head Oncologist to a contented cat. I cannot imagine him ever rushing anywhere, though I’m sure he does on occasion when necessary, but he was so laid back, spoke so quietly and calmly and with a kind of peacefulness that I felt very comfortable and comforted in his presence. It was quite an experience speaking with him and being examined by him; I felt very at peace and calm with him there, as if his presence was guarantee nothing wrong would happen either before, during, or after my cancer care. Someone commented I’d better not liken any of my Oncologists to a bird, and I said I’d liken the one Mom and I sat and talked with a while as one, but she was the kind of bird who sits in a tree and sings. Not at all concerned with rushing off onto another appointment. The one I was supposed to meet, and who I actually saw for only about thirty seconds, I likened to a squirrel—busy-busy and rushing off to her next meeting or duty. I was pleased to hear the birdlike Oncologist would be my primary caregiver. She had a manner which was comforting as well, and I felt very confident in her wisdom and knowledge of cancer care by the end of the meeting.

As of this date, Saturday, 28 Sept 2013, my surgical appointment is set for 11 AM on Monday, 30 Sept 2013. I am somewhat nervous, but want this cancer out so I can begin the rest of my treatment. My next cancer-related appointment is for Thursday, 17 Oct 2013, when I see the Oncologist for a follow-up and hopefully to begin at least planning my chemotherapy appointments.

Post-Op Update

This entry is part 03 of 44 in the series Breast Cancer Posts

Yesterday, I had my surgery.  I want to get down what happened during it before I forget, so here goes.

I arrived at the hospital, with my mom, just prior to my appointed time of eleven AM.  They called me back into the surgical prep area about ten after, and I changed into an open-backed robe and socks.  You know those hospital socks, with the grip-spots on the tops and bottoms so you can put them on either way and not worry about slipping on the highly-polished floor.  Kept my toes warm, which was nice.  They covered me with a warm sheet and had me sign consent forms and I met my surgeons surgical assistant (whose name I forgot—but I do remember she was of Austrian/Hungarian descent and had a pleasant little accent).  Before they wheeled my bed into the surgical chamber at one PM, my surgeon, surgical nurse, and Anesthesiologist “ganged up” on me and we went over what I could expect of the surgery and what the procedure would be.

Then into Surgical chamber number four.  They had me move to the surgical table, got my head comfortable, and everything ready, down to leggings which strapped around my calves to keep the blood circulating and prevent blood clots.  Then I was out.

When I woke, I was in recovery.  Had lots of vertigo at first, even just laying down, and the nurses on staff were kind enough to give me some orange juice and peanut-butter-cracker sandwiches for a snack.  It was the first food I’d had all day.  After the nurse saw I’d been awake/alert with a blood oxygen level of 95% or above without an oxygen mask for an hour, she cleared me to go and I was wheeled out of the hospital.

Mom and I took a cab home. I should say here the hospital wouldn’t have let me go home if I hadn’t had someone to stay with me overnight.  Not only do they want someone with you, they also don’t want you to drive yourself or travel by yourself if you’re on public transit.  Even with Mom’s presence, I was told I may not be able to go home last night—it all depended upon how the anesthesia affected me and whether or not I required my cpap machine.

At home, I had a light bowl of veggie soup (as I was advised to eat lightly), then went to bed around eight or eight thirty after taking one of the scrip painkillers they gave me.  There are no restrictions on my diet or activity, so I’m eating normally now and am going to go square dancing tonight.

Results of Surgery

This entry is part 04 of 44 in the series Breast Cancer Posts

What, you may ask, did this surgery get me?  Well!  Here is where I tell you.

First and foremost, it means that all the cancer is now hopefully removed from my body.  I now have bandages over my right breast and under my arm due to this.  The ones under my arm are more annoying.  It feels like they’ve bunched up in one spot and are digging in now.  I’ll be glad to get these things taken off tomorrow.  My breast has had little discomfort from its surgical wound.

In addition to all these bandages, I now have a nifty little drainage system.  This includes a tube sutured into place in the wound under my arm, which extends to about hip-length, with a bulb attached to it.  As demonstrated by the nurse in recovery, emptying the bulb involves squeezing it viciously until all liquid is expelled.  She left the bulb squeezed almost flat, but I don’t do that. It seems to need to be somewhat squeezed, or it doesn’t draw the fluid, but if it’s squeezed too much, it needs to be emptied more frequently.  I think I’ve got a nice compromise with it right now.  The fluid it collects is a combination of secretions to the missing lymph nodes and blood, though there seems to be much less of the latter now.  I won’t tell you what it looks like to me (it might make you too sick to eat).  I’m to keep track of how much fluid comes out of this bulb, so I squeeze the contents into a little urine-sample cup to get the measurement and write it down before dumping the fluid in the toilet to flush away.  Simple, if a little gross.

I spent most of yesterday in bed, thanks in part to the trauma of the surgery itself.  For me, part of the surgery included them putting a tube down my throat so I could breathe because I have acid reflux.  This has left me with a phlegmy cough which produces very little.  Thankfully, they put the tube down while I was asleep, or I would have had much to try to say.

The rest of the reason why I spent yesterday in bed is because of the painkillers my surgeon prescribed. A  combination of hydrocodone and acetaminophen. I took one of these at 8PM and another at about midnight on Monday night, and they knocked me out for the rest of the following day. Not again.  I do not like spending the day in bed.  I finally made myself get up a little before I wrote/posted yesterday’s post here, and I did not get any fiction writing at all done.  In comparison, today I got up around nine thirty, washed dishes, got a plot card on Brotherhood, took a nap from noon to two, and got up to cook a late lunch; this is more like a typical day for me, though my naps usually aren’t quite so long.

I haven’t showered since Sunday night.  Kind of not supposed to until the bandages come off, and Mom couldn’t make it out today to help me remove them—I definitely want help on the underarm ones due to the tubing.  And showering will be a challenge.  I’m not to get the area under my arm wet.  Either way, tomorrow night (if Mom’s able to make it), the rest of my body will be clean, and I’m really looking forward to that.

Nano and Chemo

This entry is part 05 of 44 in the series Breast Cancer Posts

For the past few years, I’ve participated in National Novel Writing Month (Nano, where I can be found as Ashe Elton Parker with The Power of Music 3 listed as my project), which happens each November. A few weeks ago, I wasn’t certain I’d be participating due in part to the cancer treatments I’ll be undergoing during that month and in part to the fact I didn’t know what project I’d be writing for November. I wanted something I could either prepare quickly or which was already somewhat prepared and only needed finishing-up in the way of outlining so I could hopefully work in the word count around my chemotherapy treatment visits up at the VA.

Night before last, I started making progress on TPOM3’s outline once more. I’ve also got ideas for how to handle the big major conflict that’s supposed to happen in it, which was primarily what I needed in order to continue with the outline. Now that I have those bits, I can finish the outline, hopefully before the end of October, and be ready to jump into Nano on November first. I’m not sure I’ll be sitting up ’til midnight to start progress on it, but I’ll definitely be doing my best to get words later on that day.

I expect to be starting chemotherapy up at the VA sometime either in late October or early November, so this will have some effect on my writing. I won’t know for sure the start date until the 17th of this month, when I see the Oncologist again. By that time, I’ll have seen my surgeon again and I hope I’ll have my drainage system removed then. Since I expect to be taking weekday-daily trips up to the VA, for two or three weeks in a row for the chemo, I’m kind of hoping they have at least a place where I can hook up my laptop so I can work on my writing. If they don’t, I’ll probably just read, or I may start working on another story I plan to write after Brotherhood is finished.

Issues . . .

This entry is part 06 of 44 in the series Breast Cancer Posts

My first shower since surgery was Thursday, due to the fact my mom couldn’t get over to my place until then to help me remove the bandages and cover the incision area with plastic to keep the drainage tube insertion point dry. I’ve noticed, since that day, a distressing reaction to either having my underarm all taped up or the surgery itself. Part of my right arm is numb, from the underside around to the back. I think this numbness goes onto my back, and I know it extends to an inch or two above my elbow on the back of my arm. I have some minor numbness around the front where more tape was, but my breast has not had this reaction at all, and it was also pretty extensively taped with a bandage of its own. Also, I’ve noticed a propensity for this numb area to itch and tingle, two sensations I have to endure because scratching does nothing whatsoever due to the lack of sensation when I touch my arm.

I, however, do not consider this something to worry about right now. If it’s still bothering me when I have my surgical follow-up on the fifteenth, I’ll ask about it.

What I do find of greater (though not necessarily extremely great) concern is the fact my drainage tube seems to be blocked up. I won’t describe what seems to be in it (it might make you sick), but it definitely fills the tube all the way around. I’ve been trying to squeeze this blockage down on and off since yesterday, and it’s just not working. I’m not greatly concerned yet due to the fact I still seem to be draining . . . through the incision point where the tube enters my body. This is all clear (or relatively clear) liquid, so I’m not staining my clothes. Whatever I wear will just need to be cleaned before I put it on again.

I’m not sure if I should go to the emergency room with this complaint or wait and call on Monday to see someone. Since I’m definitely still draining, I don’t want to cause undue concern. My main issue with it is the fact I’m supposed to be recording the output for some reason, and having my lymph drain the way it is now is preventing that.

There’s also the fact that transit isn’t its best here on weekends, and if I end up hanging out at the emergency room with this late, I won’t be able to get home without taking a cab. I’d really rather not do this because my income is rather limited and I’m having to save up money for the first round of Chemo appointments later on, so I can cover my transportation costs before the VA pays me back for it all.

I’ll have to figure something out. Maybe a friend can drive me to/from the hospital.

Edited to add:

It seems to be draining into the bulb again. I feel no additional pain or discomfort from retention of any fluid, and I don’t see any bloating. Looks like all that tube-squeezing I did worked.

Edited again to add:

Everything seems to be back on track with the drainage system. I had a bit of drainage through the incision where the tube enters, squeezed a few more times, and the blockage is now in the bulb reservoir. I apparently was having some sort of collection of fluid up under my arm, because after the drainage and the blockage moved, I noticed a great relief of pain I’d been having, which I’d thought was due to me moving my arm up and around too much (similar to normal, despite discomfort). Now the pain is gone and movement of my arm over my head is accompanied by the same level of discomfort as it was before the blockage happened. So all is well, thank goodness.

The Path to Cancer?

This entry is part 07 of 44 in the series Breast Cancer Posts

I have Poly-Cystic Ovarian Syndrome. This is a condition where cysts have formed on my ovaries (both), which prevents regular periods. Symptoms include things like no menstruation (or, for someone with cysts on only one ovary, menstruating every other month), growth of facial hair, and an imbalance of hormones which, if I remember correctly, can cause menopause-like symptoms. I’m not sure on that though. It’s been a while since I read up on the condition.

Because of this, I took birth control pills in order to have a period. Because not having a period can be dangerous healthwise for a woman. The buildup of the lining in preparation of possible pregnancy each month needs to be sloughed off, and that doesn’t happen without menstruating. I think one of the possible issues is possibility of uterine cancer. There are others, I’m not sure what. Again, it’s been a while since I looked all this information up and I’ve forgotten most of it.

My PCOS may have been caused by the Depo-Provera shot I got while in the Navy. I liked that shot. I don’t know what it did to keep my uterus healthy, but it ended periods for a year, and I had a quarterly the next year. After that, I didn’t have any more periods. I think that’s when the PCOS started. So, whenever I could afford health care, I pretty regularly took BC pills to keep having periods. I’d been on the pill I’d been taking for about four or five years when I found the cancer.

I’m not longer taking birth control pills, and will have to take hormone suppressants no matter what else I do. I will be discussing things with my Oncologist and whoever else will listen to see about getting a full hysterectomy. I’m not old enough for natural menopause, and the last thing I need is to develop uterine or ovarian cancer, which are both possibilities if I’m not on hormones.

I can’t take BC pills any more because the tumor in my breast and on my lymph nodes was hormone receptive. That means it really liked the estrogen and progesterone it was getting from my pills. Going theory is birth control pills is the reason why I got breast cancer.

Busy Day . . .

This entry is part 08 of 44 in the series Breast Cancer Posts

Yesterday, the 10th, I had a busy day.

My first stop was the VA, where I solved the blockage issue once and for all. I got to see Robyn again, and she spent a good half hour to forty-five minutes with me, helping me clear the blockage in my drainage tube, scrubbing off the adhesive residue from the dressings’ tape, and generally giving me advice and chatting with me. The biggest thing she did for me is show me that the tube isn’t going to break if I squeeze and stretch it with trying to get something down it. She even removed the collection bulb, which I wasn’t aware could be done. After doing that, she checked for infection (none) and scrubbed my skin using adhesive removal wipes. Then, before sending me on my way, she gave me more adhesive removal swabs and various other items I needed.

Another thing she was able to do for me which I think is pretty important was tell me the numbness and phantom sensations in the numb area of my arm are perfectly normal following removal of lymph nodes. She said I’d either get used to it, or I may get sensation back. I’m not too upset at the thought of the neuropathy being a permanent symptom. I’d rather have it than cancer, for one thing. For another, I know I’m not the only one who’s gone through this, and there’s no use getting angry or upset about it. Doing so won’t change anything. At this point, it’s a minor discomfort, not even a concern or irritation. I know why it feels that way, and I’ve been told it may be permanent, so I have all the information I need.

After that, I had lunch, went to my therapy appointment, then headed downtown to do some errands I’d neglected. I didn’t get home until after nine.

Surgery Follow-Up

This entry is part 09 of 44 in the series Breast Cancer Posts

Today, I went in for my surgical follow up. Got to see Dr. Savarise and Robyn again, and we discussed a few things, including something they found with my tumor, a DCIS or Ductal Carcinoma In Situ. As I remember this being described to me, this is basically the precursor to the cancer I had, so it wasn’t unusual to find it. Dr. Savarise went on to explain Chemo and radiation are the methods they use to ensure any other such carcinomas don’t form up into proper cancers. According to him, the next step is traditionally Chemotherapy, then radiation, which, to me, didn’t make much sense until he explained it. Can’t remember his explanation, or I’d repeat it here—I was in no condition (in a hospital gown on an exam bed) to take notes and Mom, who was with me, didn’t think to write anything down except “DCIS.”

Dr. Savarise took out fourteen or fifteen of my lymph nodes, but the only one with cancer was the one they found on ultrasound. This is good, though. It means no more surgery required at all. I can go on to the next step of cancer care without any concerns we’ve left anything undone.

Oh, and I had my drain out today! Yay! It’s such a relief to have it gone. Robyn did the removal for me, and she tried to explain what it would feel like (“a little discomfort with a little pain, but so fast you won’t really be able to register it”), before she did the procedure. To be honest, I was expecting to feel a great deal more than I did. She snipped the sutures holding the tube in place (didn’t feel those being snipped or removed), then she said, “One, two, three and we go!” and I didn’t feel the removal of the tube. I looked at her when she got done and asked, “That’s it? I didn’t feel anything!” She was very pleased to hear that. She and Dr. Savarise bandaged me up (he put the tape on the gauze), and she showed me the end of the tube which had been in me; it’s made of silicone and looked somewhat like a ladder on one side because of all the collection holes.

Both my surgeon and Robyn were quite pleased with my range of movement, but, honestly, I’ve had full range of movement since the day after my surgery. Yes, it hurt the first day after, but I felt confident I could handle it, so I moved normally. Most of my pain and discomfort now come from the effects of the surgery, which I forgot to ask about, and I meant to. However, I have Robyn’s contact information, and I can call her with my questions later.

Oncological Update

This entry is part 10 of 44 in the series Breast Cancer Posts

My mind is blasted. It started at the VA Hospital today, at my late afternoon appointment with the oncology department. I did not expect this to happen, and I wish now I’d taken notes because I just can’t seem to sort anything out of what I was told.

I’d like to go into what specific chemotherapy drugs I’ll likely receive. Didn’t write any of them down. I do know one is a steroid, though.

I’d like to write about how long I’ll be in chemotherapy. I can’t, though, because I didn’t write that down, either. I do know it’ll be anywhere from four months to at least eight.

I do know I’ll likely be going for chemo about once a month. It’s tentative, but that’s what the head oncologist plans for me. This, I must say, is a relief to hear, and I rather hope it comes true. I’d far rather make one monthly visit for several months rather than two or three visits a month for a shorter period of time. Especially after what I heard about some of the side effects of the chemo medications. He’s going to call someone at the Huntsman Cancer Institute to discuss his plans and see what they say, and I’m glad he’s getting a second opinion. General consensus from the people I spoke with today, including the head oncologist, is that since it looks like all the cancer was removed, they don’t need to do a major attack with the chemo stuff. From what I understand, this is simple follow-up to make sure nothing which may have been left behind survives. My prognosis for surviving this cancer is very good.

I do remember a little about the side effects of the chemo. I’m definitely going to lose all my hair. My eybrows. My eyelashes. I was so far behind on what they were telling me by the time the woman who spoke longest with us got to this part of the side effects that the only question I thought to ask was, “Will my eyelashes grow back?” This makes me laugh now, but I was very concerned about it at the time. As much as it annoys me that my eyelashes brush on my glasses lenses, which then require cleaning, I just could not imagine not having eyelashes.

Oddly, the woman we spoke with longest (who was neither of the two I met last time), told us (Mom was with me) her own mother had recently gone through breast cancer. She said each individual’s reaction to chemo is different, so while she could tell me what most people went through, she said things might not be on the same timeline as theirs, if it happened at all for me. For instance, her mother lost her hair early on, but not her eyelashes or brows until near the end. I might have one chemo treatment and have everything fall out before the next time I go in. She was also able to verify the differences Dr. Savarise told us about—that the energy-sapping effects of chemo may be different for different people—and that I should expect to be tired around ten days following treatments. She said this is because my white blood cell count will drop, and that I should stay at home if at all possible on the tenth day and on days preceding and following it, to ensure I don’t come down with a more mundane illness on top of everything else.

She was also able to tell me that I would most likely experience at least nausea. Vomiting is possible, but she said it’s not as common any more. They include three anti-nausea/vomiting drugs in the chemo treatment (one for short-term prevention of nausea/vomiting, the others for long-term prevention), and I’ll also receive prescriptions for more anti-nausea medications to take at home. She told me it was best that if I woke up the next day with a feeling of nausea I need to take the anti-nausea medication ASAP, to prevent the nausea getting worse, because it’s a matter of staying ahead of it. In addition to the nausea and possible vomiting, I may also experience a lack of taste or food may develop an odd or metallic taste for the day or so following the treatments, but those are temporary.

Basic advice was to try to keep my life as “normal” as possible while undergoing chemo treatments. This means I’m to continue rising at a regular time each day and performing my daily habits. I’m to go grocery shopping (though preferably not around the tenth day after treatments), and I should likely stay home on any square dance night which falls around the tenth day of treatments, to ensure I don’t get ill. However, every other Tuesday of the month, I’m to continue dancing as usual, because keeping spirits up is important.

I’m surprised I remember so much. Anyway, I’ll be getting all this again before treatment, in writing as well as in another discussion.

Next step toward chemo treatment is having a heart test done. Either EKG or the other test (which I’ve forgotten the name of) which was called by a different name. They need this as a baseline because the chemo can affect my heart. I’m to call the hospital tomorrow for my heart-test appointment, and, today, I also had a blood test done, for a baseline reading of everything, which passed.

I hope things go well.

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