Taking a nice, long break

To start this post off on a positive note, I just want to announce that my long term disability application was approved today.  As I’ve mentioned previously, the application process has been long and stressful and I’ve been living without any income or savings for several months.  I’ve been planning hypothetically, based on a number of outcomes, how I was going to deal with my current financial situation and I’m extraordinarily grateful that I got the best of all the outcomes.  If I manage everything responsibly, I’ll be in a great position to start moving forward with all of my financial and life plans when I return to work, rather than being in debt with no savings and having to start over from scratch.

Prior to receiving my cancer diagnosis, I often scoffed at the cost of my long term disability benefits.  No more.  I know that they seem expensive, but if you are ever in a situation like mine (and anyone can be), you will be terribly happy that you have them.  Sometimes life throws curve balls at you and cancer can happen to anyone, even if you have no family history at all (which I don’t).

Now that I’ve dispensed with the happy news, it’s time to move on with the less happy news.  As I’ve said on social media and to friends privately, my health has been declining significantly over the past few weeks.  Because of this, writing has become much more difficult.  My low energy levels have been sapping any desire to be creative at all.  Coming up with topics to write about has become an exercise in pulling teeth and once I get started on writing something, I don’t feel attached to or interested in it at all.

And this is all okay, I expected that this would happen at some point.  I think the best thing to do is to take a step back.  I’m taking all of these feelings as my body’s way of telling me that I need a good, long break.  I need to rest and let my body do what it wants for my last two treatments so that I can begin to recover.  I’m going to focus on reading, resting and taking care of myself as best I can.

I can’t even begin to describe how happy writing has made me over the past six months.  I managed to mostly keep to my schedule and write essays that I am (mostly) genuinely happy with.  I am terribly proud of myself.  There were a few folks in my life who doubted that I could keep up with writing for so long during treatment and I can’t tell you how happy I am to have proven them wrong.

Thank you to everyone who has read what I’ve had to say during this time.  I’ve been writing for myself — just writing to write — but it’s been a tremendous boost and comfort to me to know that some of you have been reading and considering what I’ve had to say.  I will always be grateful for your time, attention, and kind feedback and comments.

If I have any significant updates to share or if the mood to write strikes me suddenly, I’ll definitely be posting.  Once I’m feeling better, I hope to resume a regular, if a little less frequent, posting schedule, but we’ll see.  Take care, everyone!

Advertisements

Life Update: the Chemo is working (and a lot of other random stuff)

I was going to start writing a series on my relationship with stuff and money today, but I don’t quite have my thoughts on it in order.  I know I want to write several posts on this topic, but I’m not yet sure about how I want to split them up and how I want to approach writing them.  I’m also a little shaken today by the Toronto terrorist attack and the relationship between the perpetrator and the Incel movement.  Since the 2014 Isla Vista killings, perpetrated by Elliott Rodger, this kind of misogynistic, woman-hating violence has been terrifying to me.  It drains my energy and makes me want to withdraw.

And so today I’m going to take things easy and just write a bit about what’s been going on in my life.  The biggest news I’ve had to share recently, of course, is that I received the preliminary results of my latest PET scan and they’re excellent.  I have very little active disease remaining and the chemotherapy is doing its job.  Hopefully, if all goes well over the next few weeks, I will be having my last infusion on May 25th.  And then, of course, the uphill climb toward recovery begins.

As I said in my last update, the recovery process is more than a little daunting.  I had a bad wake-up call on the severity of the neuropathy in my hands a last week.  I had been itching to play video games, so I spent more time than I should have playing my favourite MMO, Final Fantasy XIV, with a controller.  I had horrible nerve pain in my fingers for several days afterward.  I’m even more afraid of permanent damage now than I was a few weeks ago.  I have to test things out from time to time, though, or I won’t able to judge my limits.  I’m going to try playing for shorter periods and only a few days per week and see if I can manage that.

My long term disability situation is finally being worked out, though things were quite stressful there for a few days.  The company I work for decided some time ago to switch insurance companies and the transfer will be completed at the end of April.  I was assured that this would have no bearing on my LTD claim as our old insurer, who I was paying premiums to when I became disabled, would still be responsible for me.  I received a call from my boss the other day that sent me into a an awful spiral.  She told me that she had been informed by our company’s benefits administrator (who is a consultant) that my insurer had still not received the medical records from my doctor’s office.  She implied that those records needed to be sent to the insurer before the end of the month or it would cause problems with my claim due to the transfer.

Of course, my stomach dropped into my knees and I started cursing myself for not speaking with a lawyer as soon as I found out that my employer was switching insurance companies.  I had been doing my best to resolve the medical records issue (which, as I suspected, wound up being an enormous and frustrating problem) and had not been successful at getting my doctor’s office to fax my records properly.  I frantically drove to my doctor’s office, basically having a huge meltdown on the way there only to receive a call from their office manager, while in the car, confirming that the records had been sent.

The next day, I called my boss and asked for a meeting with the benefits administrator.  I got her contact information and she assured me that there is no problem with the transfer.  She had simply been following up on my claim and told my boss that I might be able to expedite the situation if I contacted my doctor’s office and prodded them about the medical records.  My boss then, without knowing what she was talking about at all, called me and gave me incorrect information and sent me into a complete meltdown about nothing.  It was more than a little frustrating.  I just don’t have the energy to deal with intense feelings like that right now, but thankfully my medical records have been sent in and now all I have left to do is wait for the results.  I just want an answer, I’ll be okay with whatever’s thrown at me.

To finish up, I want to say that Frankie is doing very well.  She’s a little small so far for a French Bulldog, but she’s finally starting to understand where she’s supposed to go to the bathroom and she’s starting to grow into a lovely dog.  My mother and I were getting close to hiring a private trainer for a little while there and I know I frustrated the hell out of my old friend Deirdre (who is an awesome trainer and dog walker) with my whining, but things are finally starting to work out now.  We’ve been enjoying the nice weather and she loves exploring in her yard.  I finally feel like I’m in control of my own life again and I’m starting to love her the way I wanted to when we first brought her home.

I have chemo this afternoon and will be hunkered down in bed for most of the weekend.  I hope you’re all well and plugging along!

 

 

Let’s read some books!

The chemotherapy-induced neuropathy in my hands has forced me to make a lot of changes. I love cooking and baking, doing arts and crafts, and playing video games, but I haven’t been able to do those things since my first treatment. To keep myself busy, I’ve had to fill my time with some of my older hobbies that I haven’t made as much time for over the past few years.  Mostly, I’ve been reading.

Right now, reading is exactly what I need.  I’ve been avoiding physical books because they’re hard for me to hang on to, but my iPad mini and Kindle are easy on my hands.  Books are also a great value for entertainment media: even if I’ve spent a bit more than what I should on them recently it’s pretty tough to get yourself into financial trouble by buying books, especially since I’m a fairly slow reader.  Even better for my budget right now is the fact that I’m able to borrow free ebooks from the library.  It’s a little tough to wait for the numerous holds on popular titles, but easy and free are worth it.

As I said above, I haven’t spent a lot of time reading books over the past few years.  I’m currently on track to read 7 books in April which is, on average, a little more than I’ve read per year since I graduated university.  This has definitely been a source of embarrassment. I’ve always seen myself as a reader and for most of my youth, reading was my main hobby. As I got older, I slowly found myself reading published books for fun less often. I think there were several reasons for this.  Mostly, I struggled with finding my identity as an adult reader. With world of books being so enormous, I had trouble finding well-written, contemporary fiction that suited my taste and I didn’t always enjoy slogging through well-known classics.  I would stick with one or two authors for awhile and then have no idea where to go when I had read all of their work that interested me.

University also took a lot of the fun out of reading.  As a history major I would often have upwards of 600 pages of reading (or more, especially if it was time for term papers) per week. It wasn’t fun, easy reading: so much academic writing is dry and boring and remarkably difficult to slog through, even if the subject matter is interesting. The last thing I wanted to do with my free time was read more, even if reading fiction was more fun than reading academic non-fiction.

After finishing my undergraduate degree, I started my long and strange journey of being intentionally single and trying new things.  I started playing video games. Video games led me down a path toward a lot of new (to me) media, like manga and anime. For a good while, I wanted to immerse myself in those new interests and give myself the time to enjoy them. This didn’t leave me with a lot of room for reading published books (though I did read lots of fanfiction, but that’s another story for another day).  It’s hard for me to admit it, but books just sat on the back burner for awhile.

Being absorbed in reading again has been wonderful, like settling in for a lovely afternoon with an old friend.  The ONTD reading challenge that I decided to participate in has been especially fantastic.  I have the freedom to choose any book that fits each month’s theme, but I’m also forced to try out authors and genres that I normally wouldn’t consider reading on my own.  Best of all, the participants all make loads of recommendations each month, which has helped me make some fun new discoveries!

In some ways, one of my greatest struggles as an adult has been balancing my free time.  There are so many different activities that bring me joy that I often have trouble choosing what I should do on any given day.  I hope that once my condition improves and I return to work that I’ll be able to make room in my life to continue reading.  I won’t have as much time as I do now, but I’ve realized that it’s a hobby I should keep up with.  I certainly have enough recommendations to keep me going for a good long while!

Are there any interests or hobbies that you aren’t making enough time for?  What books are you reading right now?  Let me know in the comments!

Things you shouldn’t do for your friend who has cancer

As a follow-up to last week’s post about things you should do for your friend or loved one who has cancer, I wanted to spend some time discussing a few things that it might be best to avoid.  Of course, everyone is different and your mileage with these tips may vary, but I would say that these are the issues that I’ve had the most trouble with.  It’s important to note that my intention is not to shame or scold, I’m just looking to provide you with some best practices that might help you avoid some awkward moments (or landmines).

1. Try to avoid asking invasive questions.

Even if your friend is comfortable speaking publicly about their health, it’s important to remember that you have no right to information about your friend’s body: their body is their business.  Asking questions about your friend’s ability to perform sexually or whether they’ve lost their pubic hair is incredibly rude and will likely make them feel uncomfortable.  Of course, there are people out there who won’t mind sharing this kind of information; however, in my opinion it’s best to give your friend the opportunity to make that choice for themselves.

When you have any serious medical issues, you give up a lot of your privacy.  When I was in the hospital, for example, I had to answer hundreds of invasive medical questions in front of an entire ward of strangers (and their visitors).  As a result, I’ve become both desensitized to sharing things about myself and also even more guarded about my privacy than I was before I became ill.  I don’t like it when people ask me invasive questions, because I think it’s rude, but if I’m comfortable I don’t mind providing information — particularly if I think it can be helpful.  Let your loved one share what they want to share and realize that your curiosity isn’t important.  As I said last time, this isn’t about you.

2. Try to avoid giving unsolicited advice, particularly if you have no firsthand experience.

This one is a little complicated.  In my experience, we tend to interpret a person’s posting about a problem on social media as a request for advice.  The uncomfortable truth, however, is that sometimes that person is only looking to share their experience and they’re not seeking advice at all.  Sometimes interpreting the difference between those two things is difficult, but in general I believe that it’s a good rule of thumb to avoid dispensing advice when you’re dealing with a topic in which you don’t have any personal expertise or experience.

Don’t tell your friend who has cancer what they should or shouldn’t be eating — oncology teams generally tell cancer patients to eat whatever they can stomach.  Don’t tell them what supplements to take or how they should manage their pain or nausea.  If you’re a survivor or you have another loved one who has cancer, feel free to share what may have worked for you or them in the past, but try to do so in a way that is respectful and polite: what worked for you or your other loved one may not work for the person in question and that’s okay.  It is, of course, fine to respond to a request for suggestions, if your loved one happens to make one.

If you do feel like you have some advice to offer in a given situation, I think it’s important to remember that it is your loved one’s right to follow through with your suggestion or not.  If they thank you for the advice, leave it there and know that they have respectfully considered your input.  In the end, your loved one will do what they believe is best for their mental and physical well-being and the rest isn’t really your business.

3. Do not congratulate them on their weight loss or tell them that cancer is a great diet plan.

In our culture right now, we almost universally see weight loss in a positive light and this is a complete fallacy.  People lose weight for all kinds of reasons and many of them can be negative, such as chronic illness, mental health issues or eating disorders (just to name a few).  If you know that your friend or loved one is suffering from any of these issues, it’s probably best to assume that the weight loss isn’t intentional.  Cancer sufferers, for example, often lose significant amounts of weight due to the cancer itself (lymphomas often cause unintended weight loss) and nausea.  The weight loss that they experience is likely a reminder that they are sick and can’t eat or digest food properly and not something to celebrate.

Of course, it’s possible that your loved one won’t find comments about weight loss offensive — they might even make a joke or two about it themselves.  The most important thing to remember in all of this is that everyone is different.  In order to really support your friend who has cancer let them take the lead.  Try to be as gentle as you can and pay attention to the cues that they give you.  I’ve said this a lot over the past few weeks, but it’s never going to be less true: it’s just not about you.

Cancer/Life Update: Neuropathy and disability application woes

It’s been an interesting few weeks and I’m totally behind on writing because I’ve been sick, so I figured I’d scrawl out a quick and dirty update about how I’m doing.  I also just wanted to quickly note that, due to illness and my boyfriend’s visit, I won’t be doing a goal review post for March.  Everything’s been a bit on hold recently and I think there will be more value in evaluating my progress in April.

Chemotherapy fucking sucks.  There really isn’t any nice way of saying it.  Whenever people ask me how I’m doing, I cock my head to one side and say “eeeeeh.”  I’m surviving and I’m putting one foot in front of the other but, to be honest, chemo just gets worse the further into it you get and that’s hard to explain to folks who don’t have first hand experience.  You feel hopeful, because the number of treatments you have left keeps getting smaller, but you also know that you feel a helluva lot worse than you did when you first started and that you’ll feel even more shitty by the time you’re finished.

I’ve had 8 chemotherapy treatments so far.  If all goes well, I have 4 remaining.  I hope that I won’t need any further treatment after those 4 infusions are completed, but even if I finish there, recovery is not going to be quick or easy.  I’ve been thinking more and more about recovery and survivorship recently and I’m more than a little scared.  When I first started chemo, I knew nothing about long term side effects and I thought that, if all went according to plan, I would be back at work soon after finishing treatment.  The neuropathy in my hands and feet says otherwise.

I’ve said before that the neuropathy in my hands has been a bit better.  This is partially due to the fact that my dosage of Vinblastine (the drug that causes the neuropathy) was reduced by 20%, but it’s mostly behaviour modification.  Sometimes I wish I could show folks how my hands feel, but basically my fingers are numb and tingly, like they’re asleep all the time.  This doesn’t bother me when my hands are at rest, but when I touch something, I can feel the tingling.  My grip strength has been greatly reduced and these symptoms worsen the more I use my hands.  If I type too much or work too much doing anything with my hands, the numbness increases and I have pain in my hands, wrists and forearms.  I’ve had to stop knitting, colouring, doing any arts and crafts, and playing most video games.  I can’t really cut tougher foods like steak without help and eating with chopsticks has become difficult.  I’ve also limited myself to cooking very simple dishes, though fortunately my mum has stepped in to take over most of the major meal prep: chopping and peeling for any length of time is nigh impossible.

My feet have also been showing signs of neuropathy, but it’s mostly been showing up as stiffness, pain, and cramping. This has worsened a great deal over the past few weeks and has limited what I can do in terms of physical activity — even just walking seems to make the nerve pain flare up.  I’ve been having these issues to a much lesser degree for some time now, but I would only get random sharp pains and a bit of stiffness — these days it’s far more frequent and consistent.  The pain is difficult to treat because it isn’t consistent and doesn’t respond to basic pain killers, such as Tylenol.  Due to my behaviour modification, I’ve been able to avoid medical cannabis so far, but I think I may have to go in that direction soon.

I don’t have any moral issues with using medical cannabis, but I will have difficulties paying for it.  My short term EI illness disability ended in early February and I have been without income since then.  I do have some support from my parents, but my long term disability application is in bureaucratic limbo hell.  I had been on my company’s benefits plan for just short of 1 year prior to my hospitalization.  As such, it’s standard procedure for my benefits provider to conduct a huge investigation to determine whether my illness was a pre-existing condition.  In order to conduct the investigation, my benefits provider had to request my complete medical history from the provincial government and my family doctor.  The records recently came in from the provincial government, but my family doctor’s office has completely dropped the ball on sending my records to the insurance company and there is a ridiculous dispute going on between the two about the cost of forwarding my records.

Given that I will likely be away from the office for substantially longer than I had previously imagined, the idea that I might not have any income for the majority of that time is extraordinarily stressful.  I have bills that need to be paid, medications that need to be purchased and a life that needs to be maintained.  Waiting around for someone to investigate whether or not you’re trying to scam them by claiming you have cancer is insulting and heartbreaking and not being able to support myself financially makes me feel like I have even less control over my life right now than I actually do.

I’m hoping that all this will be resolved soon, but something tells me that the long term disability application is going to continue to be a huge thorn in my side for quite some time.  I wish I could find more information about how to approach my claims specialist, but I really have no idea whether I should be verbally stomping on her neck or if I should try to be nice so she doesn’t stall my claim even further.  I don’t really want to get a lawyer involved.  If anyone has any experience with this sort of thing, please feel free to contact me privately — I’m interested in hearing your story.

I have a PET scan scheduled for tomorrow, which I hope will give us all a better idea of how my treatment is progressing.  I should have the results by the end of next week and will update when I can.

 

The results are in

I had intended to make this post a little sooner, but I needed some time to process a lot of the information I received at my last oncology appointment.  Once I was ready to start writing again, a bad cold and some awful emotional stress got in the way.  Needless to say, I have a lot of topics already lined up for future entries.

My official diagnosis is Stage IV Hodgkin’s Lymphoma.

Stage IV is what you generally don’t want to hear.  It means that the cancer has spread to another system of the body.  In my case, it has spread to my bone marrow.

Despite all that, my oncologist is still optimistic about my case and believes that my prognosis is good, particularly due to my age and the fact that am still able to accomplish ordinary tasks.  I also have not had any real symptoms of lymphoma at all, though I have been having night sweats the past few days, which is a common B symptom of Hodgkin’s.

Even with a good prognosis; however, this is horribly scary and everything seems to be moving too slowly again.  I need to have two procedures prior to starting chemotherapy: a bone marrow biopsy and a portacath installation.  The bone marrow biopsy is tomorrow morning and will establish a baseline for what my bone marrow looks like prior to chemotherapy, in case they need that information for further testing down the road. My portacath installation is December 20th.  A portacath is basically a permanent IV — a button is inserted under the skin in your chest so that an IV line can easily be inserted whenever necessary.  I’m grateful to have one installed, since I’m a difficult person to start IVs on, but I believe that the date will delay the start of my treatment until after the holidays.

I have seen posts by survivors in online cancer forums saying that many have had their first treatment on the same day they had their ports installed, but I’m not sure if that will be the case for me.  I have mixed feelings about this. I’m not thrilled at the prospect of being chemo-fucked at Christmas dinner (and honestly chemo scares the shit out of me), but I also don’t want the cancer to spread more than it already has.

The only things I’m really sure of right now are that I’m scared shitless and my life is never going to be the same after this.