Category: Cancer

Cycle 12 and beyond

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Cycle 12 was pretty uneventful, except that it was the last. So, my last day of chemo was August 26, 2016.

The weird thing is that peripheral neuropathy got worse in the weeks following the end of chemo. My feet and fingertips tingle all the time now and my fingers feel kind of “dumb” – I can’t do some things requiring dexterity.

I had a follow-up appointment with my doctor a couple weeks later in early September. I’m eager to get my life back on track, to start exercising again, to have food taste normal again, to have my hands and feet stop tingling.

I had planned to start lifting weights after chemo was over. My doctor said I should be thinking more along the lines of resistance bands, not barbells. That was kind of a let down. He also suggests yoga, tai chi, and walking, all of which are doable for me now, if I can just make myself do it.

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And now it’s November and I never finished my post. 🙂

I had a CT scan and doctor’s appointment last week and so far everything looks good. I’m in remission. I’ll get a colonoscopy in a couple months and another CT scan in 6 months.

My hair is growing back. I’ve regained all the weight I lost. While that’s not a fantastic thing, because I’m overweight, my oncologist says, “Sick people don’t gain weight!” So I guess I have to accept that for now.

I’m not as physically active as I should be, as I’d like to be. Part of that is because I started a graduate school program through University of Maryland so my time is somewhat limited. I’m taking two classes and they are simply a LOT of reading and writing.

The b pantsuit log will likely take a different direction now, though I’m not sure what direction that’s going to be. I could write about things I’m learning for my job and my degree. I could talk about dealing with the VA. I could talk about knitting. I could talk about cats. I could talk about politics. More than likely, given how my brain jumps around on topics, I might talk about all those from time to time.

Cycles 9, 10, 11. . .

So, yeah, haven’t been good about keeping up with the blog or a few other things, but I’m on an upswing now, so let’s try to document some of this.

Cycle 9 – started July 6th

I was well into Cycle 9 when I posted about the last cycle, so the the henna pics was from cycle 9. This was the cycle where I stopped taking Oxaliplatin, like the doctor suggested in cycle 8. This makes the whole process a lot easier. It means I don’t get one of the “pre-meds”, cutting 20 mins out of my appointment (benadryl – which makes me sleepy). I only get one main med at my Wed appointment before the poison pack.

It means that the cold sensitivity is gone. I can touch metal now. I can EAT and DRINK cold things. No more room temp sodas and I can have ICE CREAM and my favorite frozen juice pops.

Cycle 10 – Started July 27th

Most of the time, I get a private room for my main treatment day. In fact, for the first 8 cycles, it was always the SAME room. This time, they were really full, so I got put in the common room that has about 6 treatment chairs.

Chandra did a second henna pattern this cycle. The henna we used was from a different source and I think it was bad. It got dark fast, but didn’t act normal and washed off too fast. So Chandra showed off her skills and refreshed it during my treatment. All the nurses and my doctor had to come over to see.

The weekend after I had treatment, my roommate’s son came to stay for an overnight trip. He was visiting his aunt in the metro area, so spending a day here was good for both my roommate and his son. I took this pic at breakfast the next morning. It was nice to see Roomie looking so happy.

The next weekend, I got to see a friend that lives in Reno for a couple of hours. We went to Ettore’s, a local bakery & cafe. Yum!

Cycle 11 – started Aug 10th

This cycle, my usual oncologist was on vacation, so I saw a different one. She was amazed at my energy and that I was still working. I asked when they’d want to take out the port in my chest and she’s leaving that up to my usual oncologist.

The only major change this cycle is that for the first time, the neuropathy caused by the Oxaliplatin is worse than it was while I was taking the med. I’ve done some research and this isn’t that unusual, but it’s still annoying. This past week, my feet hurt so often, I’ve been going a little crazy.

I had a massage today. My usual massage therapist usually does my feet. Today I told him that I wasn’t sure if a massage would hurt or help my feet. He suggested doing light pressure and letting me decide if he should continue. He was very light, but when he was done, my feet felt better. Not fantastic or normal, but a lot better. So, yay, massage!

And a third Henna Head pattern (you can see the cable of my “poison pack” attached to my port in a couple pics):

I’m letting the hair start to grow back now, so no more henna head. I got a lot of complements on it for the whole time I’ve been doing it, especially my daughter’s lovely artwork!

During this cycle, I found out that the small company I used to work for in various roles for several years went out of business. That’s very sad for all the people that kept working there because they believed in what the company was doing. I feel bad for the founder of the company. She put many years and all her energy into building that business and now it’s gone. 😦

But it also makes it clear that it was right for me to leave. I’m so thankful for having a federal job right now, for the lovely women at the Women Veterans Alliance and Women Vets Connect for encouraging me to apply for something different, and for the people at my current job that have been so supportive.

I went to lunch with a couple of other people that used to work there. The young pregnant woman is normally a very tiny thing, very slender. Seeing her with a belly is just so adorable!

My 12th and LAST chemo treatment is on this coming Wed, August 24th. I really am ready for food to taste NORMAL again.

Cycle 8

I’m a little later posting this than I intended to be, about a week later.

Cycle 8 started on June 29th.

We kept the oxaliplatin at a lower dose that cycle and the doc discussed stopping it for cycle 9. He continues to say I’m doing really well, much better than most through the process. We still haven’t had to delay any treatments or talk about stopping. He’s amazed I’m still working.

My hair thinning was getting sort of ridiculous. The last time I tried to dye it, I still had a lot of red on the hair and tried to do a turquoise color on top of it. It mixed with the red and made a nice dark purple, but my SCALP was turquoise.

That was it. I decided it was time to go bald.

I went to a hairdresser to have it done (even though roomie had been begging to let him do it for ages). It was nice. They did a scalp massage, hot towel treatment, she used clippers on the shortest setting. I probably could have left it like that, but part of the plan was for Chandra (my daughter) to do henna patterns on my bald head, so she the hairdresser then went over it with a straight razor. She was very careful, no nicks or anything. It was a good experience. I felt pampered.

I posted the above pic on Facebook, and people commented that I was “bad ass” or “brave”. It didn’t feel that way to me. It felt like this was just the next step in the process and I might as well embrace it instead of fight it.

The next day, Chandra did the henna. I showed her 5 or 6 images of other bald henna heads that I liked, discussed what I liked about each of them and then just let her have it. She combined elements from different patterns and did some of her own thing. I think it turned out awesome.

These little things make me feel good emotionally. But this still isn’t an easy process. It seems, based on things I’ve read and people I’ve talked to, that in some ways, my road has been a bit easier than most other people’s. I can eat most of the time. I’m maintaining my weight (in general, I still need to lose, but during chemo, the docs prefer if you maintain). I am able to keep working most of the time.

But I also feel really weak and tired. If I wasn’t working, I’d probably be sleeping more than 12 hours a day. When I went for a short walk around the apartment complex (to catch Pokemon, of course!) I had to sit and rest several times. I did a big grocery trip for the first time in weeks, and by the time I was at the checkout, I was shaking and had to actually accept help out to the car with my bags (which I never do). I HATE being weak (especially when the compliment I get the most is about my mental/emotional strength. I like to try to match my physical strength to the perceived emotional strength – if that makes any sense).

I’m not the best housekeeper in the best of times. I’m grateful that roomie has taken on most of the domestic duties recently, especially the laundry (the laundry room is a longer walk across the complex now in our new apartment). Don’t know what I’d do without that help (maybe bribe my kid to come over and help sometimes?) I can’t carry the laundry. I can’t take the full trash bags out. I can’t stand up long enough to clean the kitchen in one go.

The way my treatment works is that on Wed of treatment week, I get medication over a couple of hours. Then I take one medication home with me in a fanny pack, attached to my port. Friday, I go back in and they unhook the fanny pack from my port. At this point, I’ve got the maximum poison in my system. Also at this point, I start to feel really listless and sick. I still haven’t actually vomited since cycle 2 (which I think is AMAZING), but I get this particular . . . bile taste in my mouth/throat. It’s very specific. It’s different than other times I’ve been sick (pre-chemo), even different from the green bile I vomited when my gall bladder rebelled. I tend to think of it as “chemo-sick” rather than simply “sick”. And I get gassy, burping more than ever before in my life.

This is better than many people have it. I know this. But it’s still not easy.

Cycles 6 & 7

20160601_113912 — Relaxing with my kitty blanket getting cycle 6 meds. And wearing my Unconference tshirt!

Cycle 6 – Half-way!

Well, cycle 6 really kicked my butt.

I was nauseous the entire time, needing to take the nausea medicine every day. I was also really tired. I literally slept from Friday afternoon through Sunday afternoon, getting up only for potty breaks and to try to eat something. During the week, I left work early and came home and went right to bed.

I’ve been getting massages every couple of weeks, on a non-chemo weekend. During this cycle, I stopped at a shop near my massage place. They were having a sale and one of the items was something I thought they’d stopped making. They only had a handful, so I grabbed a couple and stood in line (a longish line). I started to feel sick while standing in line and couldn’t stay there long enough to make my purchase.

I barely remember those two weeks at all. Except, the second weekend my daughter and her BFF came over and we had a henna party. Chandra taught herself how to do henna patterns when she was still in high school and she’s really good at it (I think!) She’s considering maybe starting a little side business doing them.

Cycle 7

In cycle 7, the doctor said I’m holding up “remarkably well”. I’m still

20160615_111720 — Roomie, sleeping while I get treatment.

maintaining my weight after the initial weight loss in the first two cycles which means I’m eating. My blood counts have been good. I can see my test results online through MyHealtheVet and I know my white blood cell count is low. I mentioned this and he said, “Well, there’s low for normal people and then there’s low for chemo. You’re doing great for chemo.”

Not like it’s anything I can control, but each cycle that I’m doing well with means the quicker this can be over. When I started, they told me the plan was for 12 biweekly treatments, which is 6 months, but to plan more like 8-9 months. That’s because almost everyone at some point along the way gets too ill or their blood work says they aren’t healthy enough to receive treatment and it has to be postponed. We haven’t had to postpone any yet, and now I’m more than halfway through.

At this cycle, the doctor reduced one of the medications, Oxaliplatin. This medication causes the cold sensitivity (which is really freaky) and “peripheral neuropathy.” You know that feeling you get when your foot falls asleep and then starts to wake up? The pins and needles feeling that actually hurts for a minute? The neuropathy is like that – and you can’t really control when it happens, and it can be hands or feet. My neuropathy has been lasting longer into the cycle, but it only lasts for a short time each time it happens. It’s normal to reduce or even eliminate this drug partway through because the neuropathy indicates nerve damage – and can become permanent. They use the drug because it sort of boosts the effectiveness of the main medication (5-FU), but only slightly.

20160622_131238 — My BFF since middle school sent me this. It says, “She believed she could, so she did.” I love it!

My appointment for cycle 7 was earlier in the morning than usual, and Roomie and I both mostly slept through it. Usually, I’ll read or knit or watch something on my phone, but this time, we both conked out.

I’m starting to leave work early a little more often now, but I’m still working most days.

At work, I was working on setting up a desktop computer for someone, and old tower style. I was surprised at how weak I felt lifting it. I had to put it on a cart to get it to my desk instead of just hauling it over like I normally would. Then, today, I was in the stock room looking at inventory, and I couldn’t stand up for more than a few minutes. This felt like when I went to the store and couldn’t stand in line. The walk out to the parking lot at work is pretty intimidating now, especially in the afternoons.

With everything going on, I haven’t been consistent with my psych meds (for bipolar). I’ve been taking the mood stabilizer and the anxiety meds, but I’d dropped taking the antidepressant. Apparently, this is fairly noticeable. My roommate talked to me the other evening about it, mentioning that I’ve been moodier than normal and downright grumpy and asked how I was doing on my meds. This is something that my BFF, roomie and daughter are all “authorized” to ask me and tell me if they notice changes. I try to be self-aware, but sometimes I don’t see the changes until they’ve gone on awhile. So, yeah, getting back on those.

Cycle 8 starts on Wednesday this week. That will be 2/3 of the way done. I just want this over with. I’m tired of being sick and tired and WEAK.

Still here

I haven’t had a lot of time or energy to write lately, but I’m still here, still chugging along.

It seems every cycle adds a little something to the side effects column.

Just before cycle three, the doctor asked me if I was experiencing neuropathy yet. Nope, hadn’t had that issue, just the cold sensitivity (which lasts a little longer each cycle).

Guess what happened very soon after I got home that cycle? Yep, the neuropathy hit. Only lasted a few minutes each time and only for a couple of days, but again, this one lasts a little longer each cycle.

Cycle four added “first bite syndrome” which is is own kind of fun – but was milder in cycle 5.

Cycle 5 didn’t see new side effects, but they lasted longer this time. I needed to keep taking my nausea meds for well over a week. Earlier cycles, it was 3-5 days.

Work continues to be amazing and working with me and the time off I need. People have donated leave to me, enough so that if I keep working when I can, I won’t have to worry about missing any pay.

I worry that I may get too sick to work much at all the last couple of cycles, but I’m fighting to keep working as much as I can.

In other news, my roommate and I moved to a two bedroom apartment in the same complex I’ve lived in for 8 years.

They are renovating the apartments and we got one with all new appliances, wooden floors in the kitchen, bathrooms and entry way, new carpeting, new countertops, etc. One of the best things, as far as I’m concerned is that it faces east. The apartment I was in for so long faced west. In an area where is not uncommon to have several days of 100°+ each summer, that can make for a very hot apartment and high air conditioning costs. So, now we get morning sun instead of late afternoon sun and already I can tell how much better that’s going to be this summer. I’m already sitting out on the porch more than I ever did in the old place.

On moving day, we had a lot of help that I’m grateful for. I worked as much as I could, but by lunch I was wiped out and feeling a bit ill. A guy from my work came with a big truck and a dolly. My daughter and her boyfriend brought another couple and two more young men to help. It was one of the smoothest moves I’ve ever done. It’s been a couple weeks, and we’re selling in, still unpacking, trying to make things more organized and neater than they were before.

Last night, my roommate and I went to military appreciation night at the River Cats (local minor league baseball team). There were other women from the Women Veterans Alliance there, and most of them lead the 7th inning stretch.

I’m trying to be social on my non-chemo weekends. I’m not the most social person, but I need to maintain my relationships and stay connected to the world.

3rd Cycle

At my 2nd treatment, I only talked to a nurse, didn’t see a doctor.

This time, I saw a doctor and we talked for a bit about my side effects and how things were going. He was concerned about neuropathy – numbness/tingling in the hands/feet – which I had not really been experiencing. I was concerned about the nausea/vomiting. I’d been taking ondansetron but if I took it every 8 hours, I’d still get sick about hour 6 or 7.

He asked if I’ve taken ativan, and yes, it’s one of my normal meds. I normally take 0.5mg mostly at night when I’m having trouble sleeping. He suggested bumping it up to 1mg and taking it with the nausea medicine. He mentioned that the other anti-nausea medicine they might recommend can increase mania – and that’s not something we want to do.

Hooo boy. I basically slept all weekend. No vomiting, and I ate more than the weekend after the first two cycles. I think I maintained my weight, even, instead of dropping 10 lbs.

Of course, this cycle – after I told the doc I wasn’t having an issue – I got to experience some neuropathy. It was short-lived, so I could deal with it. The cold sensitivity seems to be lasting longer. I had to have my roommate cut up kielbasa and carrots for a soup I made yesterday.

The big news is my hair.

Last weekend, with the WVA event I played with my hair more than normal. I realized over the next week that my hair was thinning much more than normal for me.

So, I went and got my hair cut. It’s actually a little longer than I originally wanted, but it does some 90s “bed head” stuff that’s kind of fun. Also makes playing with colors a lot easier. 🙂

Keep moving

When I first got my job in August, I’d intended to join the gym on campus, but never got around to it. My birthday came, and I said, “After I talk to the doctor about my symptoms.” The winter holidays and new year came and I said, “After the colonoscopy, when I have a clean bill of health.” Then the need for surgery, and it’s not a good idea to start working out at that time. So, again, I put it off.

Now. . . What I really like to do is lift free weights. That’s going to still be out for some time, I think. Maybe if I had been lifting, I could modify the routine to maintain muscle, but I haven’t been.

Being active is necessary to maintaining health through chemo, so I’ve started walking again. I got a new fitbit Alta to try to track how I’m doing, at least on my good days (connect with me at fitbit here and MyFitnessPal here). Since I’ve been pretty sedentary, I set my daily goal fairly low at 5,000 steps. I met that goal 4 days and came close on one day in the past week. I’m bumping the goal up by 500 this week, at least on the before chemo days.

I keep saying I’m going to do yoga, but haven’t gotten the mat out yet. Now that the port site is healed, though, I should.

Yesterday, my roommate wanted to get out of the house and walk by the river, which was nice.

I complained about being tired after such a short walk. Then he reminded me: surgery, chemo, etc. He made me feel better about just doing what I can for now. It still bothers me that I’m getting tired when I don’t really think I’ve done much. I mean, I’ve only had one treatment. I’d expect to feel that tired in a couple months, but not now.

My appetite is back to normal, but I’ll be hitting chemo again in a few days. My weight is fluctuating as you might expect from a widely varying appetite.

Starting chemo

I started writing this on Wednesday, March 23rd after my first treatment, with the intention of finishing it up an publishing on Thursday or Friday. That didn’t happen. 😛

On Tuesday this week, I had a port put in my chest. It goes under the skin, with a line inside my body going along the jugular vein to sit just above the heart. Apparently, this is the most efficient way to get the medication into the body.

When this is done, they put you into a light sedation. I was aware of people talking. I could feel pressure where they were working, but no pain. By bedtime, there was some pain, but some ibuprofen helped.

Wednesday, I had my first treatment. The medication combo I’m taking is known as FOLFOX 6.

One of the medications is oxaliplatin. Apparently a very well known side effect of this is cold sensitivity. I was listening to the nurse talk about this one. She placed a lot of emphasis on it.

Don’t drink or eat anything cold like ice cream. Don’t put ice in your drinks. Use a straw. No chilled drinks. It seemed redundant. Don’t take food out of the freezer without gloves. It seemed excessive, and I was thinking the whole the time, “Yeah, right” and internally rolling my eyes. “Like that’s gonna happen.” I’m normally much more sensitive to heat than cold. I can wear short sleeves or tank tops when other people are bundled up.

Before I left the hospital, I was running my hand along a wooden banister in the hallway. My fingers felt like I’d touched an ice cube long enough to start to burn. WTF? When we got home, I was climbing the stairs to my apartment and couldn’t grip the metal railing. It hurt! The metal doorknobs in my apartment, the flush handle on the toilet. Cold water from the tap to wash my hands. All feel way colder than I know they are, only hours after the first treatment. Holy shit.

So this is gonna suck.

I’ve ordered some cotton gloves and I’m looking through my knitting patterns to see if I can find some cute ones I can make in cotton or linen.

I am carrying the 5-FU medication around until Friday morning, but I’m determined to go to work today. I’m letting my roommate take the car, so if I feel sick, he can come get me. That way, I won’t have to drive if I’m not up to it.

When we got home, I made a grocery list for him, including some cleaning supplies we’d need and stuff. He hasn’t lived with me long, but he’s starting to pick up on my likes and dislikes. He knew I wouldn’t be able to eat the frozen juice pops I’d bought for snacks, so he picked up some mint Milano cookies that I like. 🙂 I thought that was sweet.

Thursday wasn’t a bad day. I carried the pouch, worked, took the nausea medication. Went to bed at a normal time. Slept ok.

And vomited shortly after waking on Friday morning. Luckily, I had the day off already, since I had 2 medical appointments that day. They disconnected the pack. That was quick and easy. But I was tired and nauseous, despite the nausea medication. No food seemed appetizing.

The second procedure was taking a biopsy of my thryoid – a whole other issue.

According to my scale, between Thursday and Sunday, I lost 10 lbs. Only vomited 3 or 4 times, but simply couldn’t touch food and didn’t drink nearly enough water. I’ve gained 5-6 lbs back in the week since.

I managed to work all week, but I am pretty tired.

Different Direction – Colon Cancer

I’d originally intended this blog to be about learning data science and database systems. But things have changed since I started that path.

In August 2015, I started a new job with a federal agency as an IT specialist on the local help desk. After years of unemployment and underemployment, financial and emotional struggles, I finally had a job that was letting me live comfortably, pay my bills and start adding in some little luxuries.

But I was having some problems. I’m going to have to get a bit explicit here, to describe my symptoms. I was having intestinal pain. I’d experienced pain like this before, but only occasionally, and usually if I wasn’t consuming enough fiber. There was also blood in my stool.

And the symptoms didn’t go away.

I tried to be better about taking both a fiber supplement and Greek yogurt (for the probiotics). There was no change in the symptoms.

So, in November, I sent an email to my primary care doctor (the VA has secure messaging available so you can do that! It makes communicating so much easier than calling, leaving messages and hoping they contact you back). She asked a few questions and gave me a referral to a GI doc. Both she and the GI doc were thinking IBD – Inflammatory Bowel Disease. When I saw the GI doc in December, she suggested that I get a colonoscopy to rule out other things, just in case.

The colonoscopy was in January. By now, the pain was getting a bit worse. I was in the bathroom a dozen times a day, but I may only go a little bit or even not at all.

When they woke me up from the procedure, they pulled me into an office to tell me that they found something they didn’t expect. A 4 cm lesion that was highly suspicious for cancer in the sigmoid section of my large intestine. Biopsy confirmed an adenocarcinoma.

On February 11th, I had surgery to remove most of the sigmoid area (sigmoid colectomy or sigmoidectomy).

Recovery has been a little slower than I thought it would be. I’ve had a couple of abdominal surgeries before and bounced back faster. I’m 4 1/2 weeks post surgery and still very tender and moving a bit more slowly than I’d like.

This is a cancer that is much more common in people older than I am. I’ve seen age 69 as median age of diagnosis and 72 as a mean. I’m 46. Both the GI doc and the surgeon were convinced the surgery would be all that was needed. But they tested 15 lymph nodes and found cancer in 2.

So I need chemo.

Freaking out about that a little bit.