When You’re Down and Troubled…

All days with cancer and chemo treatments aren’t all rainbows and unicorns. Some days it all just sucks. While I try to take each day that I’ve gotten past another day or month of treatment in stride, I do have my down days. Actually, I had several last week. When I got a virus and my temp was all over the place and Tylenol wasn’t doing anything for it, it was a lot easier to walk around the house grumping that I was sick and tired of being sick and tired than it was to see the brighter side. I mean, let’s get real. I’ve had some sort of cold or cold virus for over 4 months. Enough already!!

But in the grand scheme of things, those were a few miserable days that I would have been miserable cancer or not. When people ask me why I’m not just curling up into a ball and giving up because of chemo or cancer, it’s an easy question for me to answer. This is all temporary. The virus will go away and I’ll feel better. The chemo I’m supposed to start this week will be different from the last one, and from what I’m hearing, easier for my system to tolerate. Three more months and I’ll be done with chemo for a bit. Check! A few months after that, I will be healed from the surgery and through the radiation and on the home stretch to hearing about 9 months from now that I’m free to live my, albeit very changed, life again. Check! Check! Check!

On top of the fact that this is all temporary, it could be a lot worse. I’m not laying on my bathroom floor for days on end. I’m not really bedridden. I take more naps than I’ve ever taken in my life, but that’s more of a bonus than a downside. The medications to keep me from feeling completely miserable for the week of chemo work pretty well. For the most part, the side effects of chemo are not all that bad. The taste in my mouth will go away. My hair will eventually grow back.  The exceptions are things that I’m finding out will be longer lasting, and no one told me ahead of time, and I wasn’t as prepared to experience. For 99% of these things, there are preventive measures and/or workarounds. Again, it boils down to the fact that this is all temporary.

So, like everything else, the down days, too, shall pass. Right now I’m just frustrated between the cold and the effects of chemo brain. I know that so far, chemo brain isn’t as bad for me as I’ve heard it is for some other people, but it’s still a rough adjustment to rewire my brain so that I can remember things better. It’s hard to do training when you’re struggling hard to focus and you can’t remember the important things you’ve just read. I’m thankful that I’m able to do most of this from home where there are a lot fewer distractions – you know, the usual office noise makers: people walking by my desk, people stopping by to talk while I’m in the middle of something else, someone’s phone ringing across the room, and loud conversations from the lunch room. It’s normally pretty quiet at home when I’m working.

One thing at a time. One day at a time. Still my daily motto.

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When You Need a Helping Hand

I’m not here to say you can’t “do” cancer alone. You most certainly can. It just really, really helps to have a good support network.

While chemo treatments were going along like they’re supposed to, and the anti-nausea meds weren’t knocking me completely on my ass, I didn’t need a ton of help. That meant I was able to enjoy my visitors rather than lay lethargically staring at them trying to stay awake. The week where I was horizontal for 5 days wasn’t fun by myself. Only had to do that once to find a better way. Luckily, none of my meds make me lose all presence of mind, so while I felt particularly unable to do much of anything, I was smart enough to know that I shouldn’t be doing anything other than trying to sort my socks, and that was a job all by itself.

I suppose I got a little spoiled having my aunt here for the week after my last AC chemo doing laundry, cooking and cleaning up the dishes and trash without me having to lift a finger. What this made me realize is that while it would be really awesome to have a significant other or a roommate around all the time to help with the daily stuff. These days, though, there are now more single people than there are people with spouses, so that also goes to say that there are a lot of single people with cancer.  Fortunately, there are services available to chemo patients that can help when you can’t manage it all alone.

I feel lucky to be in an area where I can get free housecleaning while I’m on chemo. Many people don’t. I wish this weren’t the case. Cleaning for a Reason is a non-profit organization that connects people on chemo with cleaning services who will provide cleaning services free of charge for women going through treatment for cancer.

Getting a ride to and from appointments from friends is awesome, and I’m very lucky to have a network of folks willing to help. For those who aren’t so lucky, there are services available to help with the financial burden that cancer can be. There are services that will provide free gas to those who are struggling to afford it. There are resources available if you need to fly somewhere to get to treatment. I just saw a lady on the news out of Montecito, CA, where a huge number of people came together to help her get to her chemo appointments while the mudslides were blocking Highway 101. There are some really amazing people in this world!

Grocery Delivery Services
When you need groceries, you can’t get out, and a friend isn’t available, there are plenty of delivery services that can help. Friends, if they’re so inclined, can help with gift cards to the stores in your area. Note: There are delivery fees included, but it’s still better than having to go out in an immuno-suppressed state and be around people where you don’t know if they’re sick or not.

Meal Delivery Services
Most folks have a bunch of menus at home and favorites that deliver. There are a few other services around that will pick up food and deliver it to you if your favorite restaurant doesn’t deliver on their own.

Other Services and Resources
There are other resources that offer services or goods for people with cancer, and some specifically for women with breast cancer and who are on chemo.

 

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Tips for Friends & Family

I’ve had some visitors and helpers in the past couple of months. I thought I’d post what I want/need to help others who will be helping, and others who might be going through this.

Energy
Cancer isn’t like having a cold. It doesn’t get better by sleeping all the time, so please don’t expect me to be napping all day. While I’m not up for a big gym workout, but I can get a short walk here and there, or doing some things at home help. I am on an intermittent leave from work, which means that when I’m able to work, I do, and when I can’t, I don’t. This is hard for me. I’m not used to not being able to focus on documents or tasks.

I don’t have the energy I used to have, and I don’t have the energy I’m used to having. Some days this is frustrating. Some days I don’t know I’m tired until I am, and when that happens, I need to be able to be home and settling down or taking a nap. Some days I just need to sit quietly on the couch and do nothing.

This isn’t to say I don’t have up and down days – I do. Some days I can get up and clean the house or go out for the day, and some days I just can’t. On the days that I can’t, I do some light reading or similar tasks at home.

Out and About
Chemo compromises my immune system. Seriously enough that if I get a cold, it could kill me. I can’t be around lots of people. I wear a surgical mask out in public as much as possible, and use a ton of hand sanitizer. I time my trips to the store (when I’m going on my own) to times when it’s less busy so that I can avoid being around strangers. This is especially important during cold and flu season.

I can go an entire week without leaving the house and that doesn’t bother me much. Really. It doesn’t. Well, as long as I have food in the house, anyway. The risk of what could happen if I get the flu is enough to cure me of cabin fever. Sometimes, just going to the mailbox is enough.

I do, however, usually have a bunch of appointments right before and after my chemo treatments – acupuncture, chiropractor, dentist, etc. They are like any other time I need to leave the house. I take my mask and I don’t linger around groups of people or strangers, and especially kids.

Eating Out
Even before cancer I wasn’t eating out much. While I was traveling, I would to go to the store and get some cereal for breakfast, soup and sandwich fixings for lunches, and I would try to eat something sensible for dinner. Aside from the fact that cooking at home is a lot less expensive, it’s still a lot about avoiding being around other people. Call this paranoia if you want, but I also don’t trust that everyone working in a restaurant of any kind is always wearing a face mask or gloves, especially if they’re sick. I know some places don’t allow the to wear gloves or masks, and I know some people can’t afford to stay home as much as I wish they would. It’s up to me to take care of myself, so please try to understand if I am not interested in going out to eat with anyone.

If I do go to a restaurant, I need to sit as far away from other people as I can and I will ask the host/hostess for this kind of seating. If they seat someone next to me that I think is sick, I will want to leave or be re-seated. I’m not being a jerk. I really, really, really can’t get sick while going through this treatment. Please support me in this.

Errands
I can utilize the Safeway and Fred Meyer delivery services as well as Instacart when needed. I sometimes like to browse the store in case there’s something I want or I forgot to put on my list. What works well is when someone can make a run to the store for simple things like bread and milk. What works best is a divide an conquer approach – go to the store with me, take half my list and we meet at the front checkouts. This minimizes the time in the store, and we get some time to hang out.

Visitors and Socializing
I am a people person, but I *can* stay home alone for a week, even though I do get a little stir crazy sometimes. If you’re interested in visiting, I have some rules.

  1. If you’re sick, think you’re getting sick or have been around sick people, please think twice and stay home til you’re feeling better.
  2. As much as I’d like to, I learned the hard way over Christmas break that I can do very limited stints as a tour guide. If you’d like to visit and go see the sights, I’m happy to help point out some cool things, but you’ll need to get yourself there and back. Google Maps and Waze work great here.
  3. I’m cool with trying new foods. Mostly. There are only a few things I really don’t eat. If you have a new recipe to try, I’m probably game. Just ask.
  4. Because of the limitations on going out and about, my ability to watch movies is now limited to cable on-demand or Amazon. Both work fine for me. I’m thinking about trying Redbox. Otherwise, movie theaters are pretty much out til next year.

What Do I Need? 
Well, I’m glad you asked. No, really. I am! My needs change depending on where I am in the chemo cycle. If there’s nothing specific when you ask, gift cards are always helpful.

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My ER Adventure

As I’ve mentioned before, I have had trouble shaking some sort of cold or upper respiratory crud since October. After 2 rounds of really stunning antibiotics, it seemed it was finally going away the week after Christmas. New Year’s week, though, I started coughing again.

At my January 12th chemo, I asked my oncologist first to refill the antibiotic, and after our conversation, to culture it because I’m truly sick of being sick. I got a ‘no’ to both. Another round of antibiotics would put me at risk for c-diff or a couple of other infections that are caused by imbalances after taking antibiotics. So the only option was to wait it out. She did give me tessalon pearls, which is an expectorant, for the cough.

For the first week after chemo, I just felt sorta tired. Starting a week later, I started noticing a low-grade fever, feeling more tired, drenching night sweats, and more coughing. This went on into the following week when my temp started to rise. When you’re on chemo, a temp of 100.5 is enough to excite the medical team. By Tuesday night, my fever had finally gone over the magic line to 101.6. My oncologist was the on-call that night. She said again she thought it was a virus and to take Tylenol every 4 hours, keep up the fluids and follow the protocol. By Wednesday, it was not any better. She decided to prescribe Tamiflu in case I’d picked up the flu somewhere. After I picked up the Tamiflu  and 2 hours after I had taken Tylenol, my fever hit 102.6. I took the Tamiflu and went to bed. I took it again Thursday morning and hung out on the couch. My temp had been hovering in the 101.6 range most of the day, and when the nurse called at 4 pm, it was 102.7, and I got orders to go to the ER. I had just taken some Tylenol, and while it *was* the middle of rush hour and we’re in the middle of a flu pandemic, I was in no hurry to get to the ER to be exposed to something worse than I already have. During the few hours I was waiting, my temp went down to 99.4. I didn’t think there was much point in going to an ER with a temp of 99.4 so I called the oncologist’s nurse and let them know that my temp was back down to 99.4 and I’d come in to the clinic for the blood work they were looking for. When the nurse called Friday, my temp had gone up to 101.4 but not over that point, and I was told again to go to the ER. Not what I wanted to hear, and they empathized. It took me a while to get myself together. Mostly fighting again not wanting to be in an ER.

All the above considered, I put the numbing cream on my port and drove to the ER mid-afternoon on Friday. When I arrived, I valet parked in my “normal” spot. It’s one of the few garages at the hospital where my 4 Runner fits in a parking spot. I had to walk halfway across the hospital to get to the ER. There were 2 or 3 other people waiting when I got there to check in. It didn’t take long to figure out why people were sitting where they were – there was a woman sitting in a wheel chair by the door who was very clearly sick, and very most probably with the flu. What made me livid was watching this woman sit with her back to the security people and the registration desk, pulling her mask off her face and having a minutes long coughing jag. There were other people in this ER waiting room who weren’t sick. I hate to think of what this woman was spreading with her reckless behavior. Part of what saved me is not only having cancer and being in the middle of chemo, but also that the lidocaine cream on my port only lasts so long, so if they wanted to start getting blood out of me, they needed to get me into a room, which they did.

Once in my room, I had a chest x-ray first. Then a nurse and a phlebotomist came in to get the blood draws going. I was surprised that the phlebotomist went for my other arm because I thought all blood draws would be through the port since I had one. This was a rude awakening. She needed separate blood for cultures. The blood panel (CBC) stuff where they check my white counts and all that came out of my port. They let me sit a bit watching my vitals, then came looking for a flu swab, a urine culture and an EKG. After all the blood and urine cultures, the chest x-ray and the flu swab, I was told I have a cold and I am a bit dehydrated, and once they got some saline into me, they’d let me go home. I asked about something to eat, as I’d been there for more than 4 hours over the dinner hour without even a snack and I was getting hungry. They brought the saline in with half a sandwich, and I watched some TV until the bags were finally empty.

I got another bit of a rude awakening – they lock off access to the wing where the chemo clinic resides, so I couldn’t walk through the hospital to get to my truck. Lucky for me, there was an admitting desk I didn’t notice was occupied on the way by the first time, where the very nice young man working there called security for me to get my key from the valet and take me to the garage I didn’t know existed before where my truck was parked – with elbow room! The security guy joked they could have parked it in there sideways. LOL

I got on my way and was home about 9:30 Friday night. I fell asleep on the couch probably about 10 pm. I woke up a few hours later and went to bed and slept til noon. When I got up, my temp was 99.4. I hung out on the couch Saturday half awake, watching movies on demand. I went to bed at 10 pm and was up 4 times, mostly because I was soaked. The 5th time I lost my bed and went and slept a few hours on the couch. I went through a record 5 shirts and 3 pair of pajama pants last night. My temp was 98.5 earlier. I sincerely hope that I’m about done with this virus!

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More on Chemo Brain

First, if you hadn’t figured it out already, my last post was not as much about chemo brain itself as it is me working out some of the things cancer is putting into perspective for me. This one will tell you more about what chemo brain is and how it’s showing up for me.

The American Cancer Society has a rather vague (IMO) definition for chemo brain.  The one I like best so far, because it’s way more inclusive of the symptoms, is the definition from Mayo Clinic. This article from the National Cancer Institute, the government research office, has more information about the various studies being conducted to see which therapies have a higher incidence of chemo brain and what studies are being done to counteract it.

Let’s be clear – the whole point of chemotherapy is to kill cancer cells. How it does this is to target cells that grow more quickly than others. Chemo doesn’t discriminate to target only cancer cells. It kills skin, blood, brain, liver, and other cells that are also quickly dividing. Your skin cells reproduce about once a week, blood replaces itself every 4 months, and there are some cells in your body that only reproduce every 7 years. It only makes sense that the cells in your brain that are doing a lot of active work to learn and store new things would be targeted by chemotherapy. During the week after chemo, I take an injection every day for 7 days to help build up my white blood cells to prevent infections. If they could figure this out, why isn’t there something more we can be doing to help our brains recover?

Radiation therapy does much the same as chemo except that it alters cell DNA. Like chemo, it doesn’t know the difference between what’s cancer and what isn’t, either. How this minimizes damage to “healthy” cells is how the radiation is targeted to various parts of the body. For me, it will be my chest and armpit where the cancerous lymph nodes are.

While the folks who study this stuff seem to think it’s the whole treatment package that causes these issues, I’m here to say it’s not. It’s just the chemo, and for me, just the AC chemo. So far. And if this is what’s happening now, after only 2 months, it’s not a stretch to understand that I’m not at all happy about this as I look down the road at at least another 8 months of chemo before this part of my cancer adventure is over for me.

Before my cancer diagnosis, I was on the road and not feeling myself, but not enough not myself to be too concerned. In hindsight, I should have been more concerned. I wasn’t because whatever was going on wasn’t interfering with my ability to function during the week while I was working – I worked some evenings and late nights and went to bed early on others. Not necessarily abnormal for me.

When I got my diagnosis, I also found out I had no iron. Not just low iron, but like next to none. There are a number of measures in your blood work that tell your doctor how much iron is in your blood and how effective your blood cells are at doing their job. Two that jumped out at me in that first blood test result were my serum ferritin level, which was 4 ng/mL. Normal is 10-205 ng/mL and my iron saturation (%), which was also 4 when normal is 15-50%.  So… severely anemic at the time, no? A month later, after taking double doses of iron, those numbers were back well into the normal range, and all the issues that should have been related to being anemic that weren’t there when I was anemic started popping up after my iron went up.

What am I trying to say? Well, when I had no iron and was chronically tired, I was still able to function like I always had.  I was doing a lot of complex tasks, multitasking and not making mistakes. I wasn’t forgetting what tasks I’d done or needed to do next. I was able to focus on tasks at hand without being any more distracted than normal. Yes, I was tired. Yes, I’d forget the occasional thing, but not like now. The biggest change in my life at this point is that I’ve been given high doses of two powerful chemo drugs.

What’s different now?

  • I can’t focus. Depending on where I am in the treatment cycle, I can’t focus to save my life, or toward the end, I can focus for a few minutes.
  • My short term memory sucks. I can’t remember what I did 5 minutes ago. I can remember the combination to the bathroom door at the acupuncture office where I haven’t been for 8 months, but I can’t remember where I put my glasses not 5 minutes after I got out of the car.
  • I have to keep an actual written list of things I need to do and check them off as I do them. This isn’t, and never has been, me. Outside of maybe an occasional grocery list. Seriously.
  • I interchange words. Words that are not remotely related to each other but start with the same letters. Banana can become Band-Aid. Unless someone catches me doing that, I have no idea that I did it.
  • Words escape me. I don’t usually have problems accessing my vocabulary. Now? It takes a good 30 seconds to a minute IF I’m going to remember the word. Sometimes they never come.
  • I’m having a hell of a time retaining things I’ve read. I’m trying to do some certification training for work. Before I would write down the things I was struggling with and remember that later. Not anymore. This truly sucks. And this piece, I don’t know how to fix or work around.

For someone who relies on a partially idetic memory, which means that I can usually picture the screen you’re on troubleshooting a computer issue, or details of things based on a picture in my head of the web page where I found the fix, this type of cognitive function loss is frustrating. Thinking about spending the next 5-20 years like this is not only scary, but unacceptable to me.

The oncologist and I will be talking about this on Friday. There are drugs coming out of studies at Sloan Kettering. There have to be supplements or enzymes that help. Knowing that pretty much every cancer survivor in the country has had this issue or is still experiencing this issue gives me hope that they’ll figure something out. Treating us like 80 year old dementia patients is no longer good enough.

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Chemo Brain

Yesterday, there was an article posted on the WBUR site under their This Moment in Cancer series that was picked up by NPR, titled, “After Cancer At 18, I Learned ‘Chemo Brain’ Can Last Long Past Chemo.”

This article lit a fire for me.

One of the struggles I’ve had for the past few years is balancing my desire to be fiercely independent with having someone who could and would want to take care of me. In all honesty, it would drive me up a wall to have someone that made all of my decisions for me and I just had to go along for the ride, so the question I need to answer is why do I think I want that at all.

In the past few years I’ve not been good about taking charge of some life and most health choices. Looking back, my diet’s been pretty abysmal. Same with exercise except that instead of abysmal, it’s been non-existent, and that’s for other reasons that no one else would understand so I won’t indulge that here. In general, I’ve allowed entirely too much “tomorrow’s another day” mentality to seep into my being rather than taking better control of my life and my choices. This is something I need to do some serious thinking about in terms of which areas I flip flop and why. Again, not really for this forum, but these are things that go into the conversation about what I’m willing to accept from chemo and its effects.

Cancer is something that happens to you. There are probably things we can do to prevent some types, but some of us are going to get it anyway. The best we can do is make sure we get our screenings done so that we catch it before it gets out of control and it’s treatable in less toxic and invasive ways. That was one of my mistakes and part of this weird mental space where I let tomorrow be another day to put my head in the sand and ignore the things I was supposed to be doing to take care of me. Even during these treatments, I find that I’m bargaining with myself about things that I need to be doing –  I was up 5 or 6 times Friday night drinking water and going to the bathroom. AC chemo is a bladder irritant, so there isn’t much bargaining I can do with a full bladder, so I get up and do what’s necessary. Now, sitting on the couch, I’m bargaining with myself about whether I’m going to get up and get something else to drink. I have to stop doing this. I simply need to take better care of myself.

By the same token, I need to make an effort to better understand the treatment plan my oncologist has determined for me and then become a more active and vocal participant in what else I can be doing to ensure I don’t have lifelong effects from chemotherapy. There are different things they recommend for each type of chemo and the doctors and nurses will work with you to minimize and/or monitor the effects. For example, they take quarterly echocardiograms to ensure that there isn’t heart damage from any of the drug cocktails I’m on. Part of my blood work checks to see that I have good liver and kidney function before each treatment. For my upcoming Taxol, I will need to take some new supplements that will help prevent neuropathy, which is tingling and numbness in extremities.

This brings us back to chemo brain. When I asked at the beginning of my treatments if there were vitamins or supplements I should be taking, I was told to just take a multivitamin and it would be fine. I didn’t know of any other issues that I should be concerned about, so I went about my business and did 4 rounds of AC chemo. While I had some short term memory issues from my iron deficiency, I did notice that I was sometimes more foggy or couldn’t keep track of a list of simple items after my first chemo treatment. I didn’t know at the time that this would be a long term issue. After reading the article, I learned from other cancer survivors that they had issues with chemo brain for at least 5 and many for almost 10 years after their treatments stopped. I felt like nobody cared as long as it happened to people over 40. I took away that it was something that needed to be fixed because when it happens to someone who’s young, it’s a lot less okay an outcome than for someone my age. That’s not okay with me. I could see it better if I were in my 80s, but being only in my early 50s, that doesn’t fly. It also makes me wonder what the effects are when you have a family history of early onset Alzheimer’s and dementia. I’m now raising it as an outcome that we need to do what we can to prevent ahead of time and mitigate the long term effects. If it’s not okay that I come out of this with heart, liver or kidney issues, it shouldn’t be okay that survivors have to accept long term cognitive and memory issues because well… you’re still here aren’t you?

That’s not how I want to live.

There is way more to life than I’m standing here in front of you post-cancer.
I didn’t go through all of this to eek by and merely survive my treatment.
No. I did this so that I have another chance to live the one and only life I’ve got and live it well. No one should accept any less from our medical community.

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1st Milestone – Last AC Chemo

This past Friday, January 12th, marked my first milestone on this cancer journey. I had my last AC chemo. I haven’t had any major issues with this treatment, but I am super glad and grateful to say that this was my last dose and it’s time to move onto the next phase.

I’ve been really lucky to have my aunt here helping out this time so that I can just rest my body more than I have been. It feels nice to be able to let someone else handle the meals, the dishes and the laundry for a few days.

Medication-wise, this time I was able to drop the Compazine entirely and I took only one Zofran. I otherwise made it through this treatment phase on the steroids alone. I had a nastier, more bitter taste in my mouth this time, which made it really hard to drink and get enough fluids. Now that I’m on Day 5, I can kind of make up for some of that. I’m also  thinking now that I will try this weekend to drink as much water as I can and soak in a nice Epsom Salt bath to see if I can treat my skin a little better.

What is the next phase? 12 weeks of weekly Taxol with Hercepta and Perjeta added every three. While there are still the same restrictions to work within (not going out where there are a lot of people, making sure I have support around to help when I need it, etc.), and the side effects will be a little different. I need to have some different supplements this time to help ensure I don’t have neuropathy issues – the ones where your hands and feet tingle. I am hoping to be able to work more than I have been able since starting this chemo back in November. I probably won’t get my hair back, but that’s okay because I have my awesome wig! Next milestone is at the end of April when we re-do scans and make decisions about surgery.

 

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