Week 13 – Answers to my earlier questions

It’s week 13, treatment 7, day 6.  I wanted to go back and try to answer some of the bigger questions I had early on.  I have 1 treatment and 3 weeks of chemo left.  I can see the end, yet the pain keeps me shortsighted.  Perspective shifts with pain I find.  It’s a gorgeous day, however, and on this Sunday I got to both the gym and the park on my bike.  If I don’t stop or look at my reflection I can almost forget I have cancer.  I feel very fatigued but somehow strong at the same time.

This is what I wrote originally.  See Week 6 – Chemotherapy side effects.  “The questions I had, and some I still have, that others may share:  What will chemo feel like?  What are the side effects?  Can I still work?  Will I be throwing up all the time?  Will I really lose my hair and when?  What is “chemo-brain”?  Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?  Will I have ‘moon face’?  What happens to my skin and nails? Will my old fibromyalgia re-emerge? Will the chemo kill me?  Will I wish I were dead instead of having it? Will it hurt?  What else might happen? Will I need help?  How much? Who will be there with me and who will not?”

Answers:

“What will chemo feel like?  It feels like a bomb hit me some days. It feels like something exploded in my body and can’t get out at times.  It alters both mind and body with symptoms and fog.  Other days it just feels like fatigue – operating my body at quarter energy.  My spirit and clear mind come back during these days and I live life intensely.  I’ve written much on chemo already so I’ll stop here.

What are the side effects?  You can read the original post and updates for more gory details but basically I’m on the 16 week ACT program for breast cancer.  I received treatment every two weeks.  The side effects during the first 4 treatments of my A/C where different than they are now during the last 4 treatments of T.  I can’t say which I prefer.  Maybe the latter.  They both suck.  I advise avoiding them completely, if you can.  With the first 4 treatments, the worst side effects were nausea, fatigue, some pain, chemo brain, mouth sores, hair loss…   In that order of severity.  For these past three T treatments the worst side effects are bone pain all over my body, hot flashes, fatigue and nausea.  I hear more neuropathy in my hands and feet, as well as excessive fatigue, will increase with this third treatment.  Yippee.

Can I still work?  Not really.  Very part time.  I still have to work some, 1) for my sanity and 2) because I am self-employed and my sole support.  No sick time, no disability insurance, no good to get sick my friend.  I have a mortgage and studio to pay for in addition to all the medical bills.  At first I tried to work most of the second week of chemo treatment but was completely overwhelmed by managing the details when I still had bad chemo brain.  After crying with four clients in a row I had to stop.  I now take one or two clients at the end of each two week treatment and focus all my energy on them and hope they buy a lot.  That’s it.  I don’t pressure myself to do more and I let it be.  Whatever income I create will be enough until I can work PT or FT again.  Now is not the time to work, although I feel the financial pressure.  I’m living on savings, and have rented a room in my home as well as part of my studio.  I’ll miss the holiday season, my busiest time of the year, which usually gets me though the winter.  I’ll ask those clients to come after the New Year when the surgery is complete and I just have radiation to manage.  Post holiday photographs will be the new thing this year.  Spread the word, it’s all the rage.

Will I be throwing up all the time?  No.  Anti-nausea drugs are amazing.  I’ve felt nauseous most of the time, but haven’t actually thrown up.  It is better for me now during the T treatments than with the AC.  This was one very welcome discovery!

Will I really lose my hair and when?  Yep.  Two weeks after my first treatment, like clockwork.  My head, legs, underarms and yes, pubic, hair all gone.  My eyebrows and lashes are barely holding on but I’ve heard that may be short lived with the T drug.  Damn it, I thought I was going to get away with them!  I “leak” now whenever the wind blows as there are so few lashes to stop the tears from overflowing.  I’m happy to have had them as long as I have.  Eyelashes are lovely.  They will grow back quickly, however.  I’m still pissed off that my brows are thinning.  If they go I’ll start a riot!  The bright side – I’m happy not to have to shave my legs and pits!  My head grows stubble, which I shave every two weeks because I like the feeling.  Nice!  I hear it starts growing in as soon as chemo ends and grows back at about ½ inch per month.  It’s going to be a while until it’s any sort of style, but I’m glad I wore it short for a week and liked how that looked. Can’t wait to get that sassy bob grown out!

What is chemo-brain?  This is still hard to describe.  It’s a fog.  It’s like my mind working in slow motion.  I can see the pieces, but I can’t put them together quickly.  It’s like slogging through mud to get to the answer.  I’ve found myself asking people to talk more slowly on the really bad days.  I make lists to remember things and then forget to read the lists.  Fortunately, this is not a side effect that is bad every day.  It’s usually just the first few days after treatment and then it lessens.  It is much less of a problem with the T portion of my treatment these last 3 sessions.  I’m sharper now but dulled by more pain.

 

Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?   The one you’ve been waiting for.  Well, the answer is I don’t really know. (Damn it! And only 3 weeks left to find out…) The 24-hour rendezvous man fell away the same week as my hair.  Pity, I liked him.  To my great surprise, others have emerged and I’ve even had 3 interesting dates with someone and put off the attention of others.  Who meets people to date during chemo?!  That’s nuts.  I even shocked myself.  It’s been good to rally my energy on a good day and enjoy company and dinner once in a while.  My heart and my mind are slow to focus on a new romantic love and prospective relationship right now, however.  Sex, for me, is connected to those things (usually, at least), and so while I’m sure the answer would have been ‘yes’ in the context of a relationship (the interest is still there on the good days), the truth is I just don’t know.  Nothing rallies the mind and body like romance and I love the prospect.  I’m so glad chemo is almost over!!

Will I have ‘moon face’?  No.  As far as I know this is caused by higher doses of steroid than what I was given.

What’s happens to my skin and nails?  I heard horror stories before.  My skin has become very dry, however, virgin coconut has been my favorite solution and cured the problem.  I slather it on after every shower and then wear a hula skirt.  I also really like CV Skinlabs and Violets are Blue products that are made specifically for cancer patients.  Very excited about both of them.  Overall my skin has done very well with a combination of these products and coconut oil.  Radiation will be it’s own story.  My sister says she has horse utter balm for me from the vet.  My nails have been fine (and yes, I’ve had them done and they are sexy).

Will my old fibromyalgia re-emerge?  No, thank god!  However, the pain from the Nulasta shot that stimulates bone marrow does cause me pain that is as intense and does migrate like fibromyalgia.  It’s bad and it, like fibromyalgia, is very difficult to tolerate.  While the doctors ask me if I ‘ache,’ this is definitely pain not an ache.  Maybe I have a different level of pain than most. Perhaps that is from having some form of fibromyalgia and nuerological pain issues still underlying everything.  I do not usually experience fibromyalgia pain or symptoms now due to new medication.  (Don’t even get me started on the idiotic argument that fibromyalgia may not be real.  Anyone who has lived with it will tell you exactly where to put that ill-informed opinion.  That can be filed with cancer cure diets consisting of pot and cantaloupe.  I received both.)  My chemo pain feels as bad as fibromyalgia, or the surprise may be that fibromyalgia feels as bad as chemo.  The good news is that the pain does lessen and almost goes away before the subsequent treatment.  I can deal with this.  The drugs I’ve tried do take the edge off, but do not take the pain away.  The pain has gotten worse with each treatment and this most recent #7 treatment has been very painful.  During the first part of chemo I thought that overall it was still easier than 7 years of intense fibromyalgia.  Now that the pain has started I find the two very similar, except I know it will go away once chemo ends, which makes chemo bearable.

Will the chemo kill me?  Will I wish I were dead instead of having it?   Although some days suck, chemo will not kill me, and I’m happy to be alive.  My blood work is being managed and, although I am vulnerable, I am not in danger of the side effects of chemo taking me out.  I can, however, imagine why people chose NOT to continue chemo sometimes.  It’s overwhelming, exhausting and feels very out of control.  Everyone in chemo makes their own choice.  Many people are in chemo not to “cure cancer,” but to manage terminal cancer.  I have a new understanding of what it means to choose not to have chemo.  Where the side effects make the quality of life worse than simply living without it.   I can imagine a time I would not want more.  For now, I’m happy to do it and finish.  It’s much better than the alternative, and I am fortunately enough to have the option.

Will it hurt?  What else might happen?  Yes, it hurts me, but not all of it.  Receiving chemo itself does not hurt.  Some of the side effects and the drug Nulasta do hurt.  Almost anything else might happen and does. I’ve seen others experience a wide variety of complications, but have been fortunate to have followed a fairly predictable path.

Will I need help?  How much? Yes, a lot some days.  None other days.  I need different amounts of help at different moments.  It’s so hard to predict.  From making food to making sure I take my millions of pills at specific hours.  When the side effects set in I want to do neither.  I like the comfort of having people around, and the company friends and family provide.

Who will be there with me and who will not?

To be written about later.

 

 

 

 

 

 

 

 

 

 

 

 

 

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