A Day in The Life of Taxol. Four Left To Go.

Tossing and turning all night long has exhausted me daily. I dream, then wake as my cheeks become engulfed in flames and it slowly spreads to the top of my head. A strange cool feeling hits my head as tiny pin prick beads of sweat burst forth from every hair follicle. I touch my head to see if I’m sweating. Sometimes I am, sometimes, I’m simply hot. I fan furiously with one hand and feel instant relief. However, the moment my hand stops, the heat hits me in full force. I can only wait it out and tear the blankets off. In a few minutes I’m freezing. It’s a nightly battle.

During the day I’m treated to the same experience, but it seems less often. My hat often finds itself left on a counter while I’m at home because I’m only moments away from tearing it off.

When the sun comes up or when I’m ready to drag my tired body out of bed, I step carefully. My feet are half asleep and half in pain. This seems to be worse with each treatment, but not bad enough to slow the treatments down..yet.  HOT FLASH!

On this morning, I needed to hop in the shower and try to get my baby brother and little girl moving. They both had school. I felt nervous. All day Sunday I could barely move off the couch. This latest round of Taxol seemed to mimic the Red Devil. This past week or two I have also needed assistance in opening a can of pop or pushing a heart burn pill out of the bubble packaging, since my fingernails are so painful. Initially, I thought it was the nail polish I had on, but now I realize this is the neuropathy rearing it's ugly head.

I began to feel more awake as the shower progress, but also like I could crawl back in bed. However, once out of the shower I was now completely awake. And yet, neither the 15 year old nor the 5 year old had moved an inch. Seriously?

We finally got moving, even with flu like aches and pains and this bloated ugly feeling. I pulled into my brother’s school parking lot and caught a glimpse of my eyebrows in the rear view mirror. They are almost gone and the bags under my eyes look even bigger. Perhaps because half of my eyelashes are gone they appear larger? I sped away to the Caribou to get an additional boost before going to my mom’s. My daughter starts school later than her uncle, so we eat breakfast there before she gets dropped off.

While she is at school I always have high expectations of doing this, writing. Or getting paperwork filled out, responding to emails, or any number of things I should get done, and I usually end up talking with my mother and not accomplishing much in the 2.5. hours she is gone. Or I have a doctor appointment during this time. This day was no different. Not feeling well, I decided to just sit there and talk while I waited for my little girl to be done with school.

Once she is loaded back into the car, we head back home and I can’t wait to just lay down. If I stand for too long I feel the color drain from my face. I don’t feel nauseated, but more like if I don’t sit back or lay down, I will end up sitting or laying down without my consent. My wonderful fiancé dresses up our kiddo in her snow pants and boots and coat and allows me to rest while they go sledding for an hour. She returns sweaty and red cheeked bringing me back to my own sledding days. Even the smell of her sweat from out door play is sweet to me.

Finally, after three days of feeling less than human, I start to feel the side effects from last week wane. I'm not feeling so well that I would dare touch a glass of liquor right now, but I can maybe make my own dinner tonight. I can drink something without pain emanating from my teeth when the cold liquid touches them. I can be less careful about grabbing things without worrying if I tore a nail off because they are no longer as painful and do not feel as fragile, though they likely are very fragile.

I will not be escaping the sweats though. One curious thing seems to be happening that I just noticed today, it looks as though my hair on the top of my head is growing, somewhat? Immediately I googled this oddity as I feared it meant that the chemo may not be working, or the cancer is stronger than the medicine. I felt relieved as I read others had encountered this same thing on Taxol. I know everyone reacts differently, even to different chemos, but it seemed like an odd thing to happen when my eyebrows are still coming out.

I do reflect on one positive from the last few days. I have been way too busy feeling cruddy to allow the news to stress me out. I review my phone less in those moments. Log in less to facebook, turn the tv on less to the news stations. 

It is exhausting sitting up, grabbing a remote, and turning the channel. I simply can't be bothered with that. This may be something I begin doing regardless of how I feel just to keep my sanity and my blood pressure at a normal rate.

Taxol: Six of Them Left...

UPDATE: They said yesterday was six, but I only count 5. I will need to resolve this...

Sleeping has been my thing as of late, and when I’m not sleeping, I’m filling out paperwork or trying to keep up with the 5 year old. There is nothing like finding the energy to start doing the dishes and this when she wants me to help with her something. Seriously, for over an hour, nothing, and then I move or someone calls and she needs all of my focus. It's a wonder I get anything done with this not so tiny dictator in my home. Thank God for preschool or I think we would both be sick of each other by now. Okay, she adores me and I her, but some days...

Last week I went to treatment with my little brother. He is so cute.  (Don’t tell him I said that) We didn’t talk too much as we were both buried in our electronics we brought. I was bent over my laptop as the nurse tried to administer treatment. The cord kept getting in my way while I tried to type. But in my defense, I had to act quickly before she brought out the Benedryl. It's not long after this medication and I'm drooling and seeing 10 fingers...on one hand. 

Kellen, not noticing any of this as watched Netflix on IPAD. Whether we spoke or not it was nicer having someone with me than going it alone.

I hadn’t noticed neuropathy until this past week. My feet had become this weird fuzzy numbness on top of the dryness. I could only assume it was this neur..op..athy...the doctors spoke of. 

Now I have to be on the watch for this and whether or not it gets worse. I’m hoping with only 6 weeks left of chemo before the daily radiation begins that it won’t become too terrible. It can become permanent and I don’t want that to happen. I tend to not remember or notice things like this too much. I’m a big baby about needles, but yet I don’t react to other pain in the way that I should.

After celebrating, the kid brother’s birthday later that evening with a game of Pandemic (that is after we forced him off his laptop where he did nothing but talk to his friends online) I brought him home in the morning. It’s always lovely visiting with him. (sarcasm)

Next, I finally got back in to see my counselor, which they offer you with cancer treatment. It went well, but as is typical of me, I’m all over the place on topics in a short hour. It will be hard or I’ll need a lot of appointments just to nail down one topic. 

So many things stressing me out, not to mention our current POTUS, but I won’t get into that too much (if I can stop myself, which I probably won't be able to) as I know that it’s a very sensitive issue. I do get into it on my Facebook with posts here and there.  And I do delete posts that I don’t agree with, but I see that arguing with people almost seems fruitless. We only see what we want to see and we can’t see what we don’t understand or won't try to open our minds to understand. Yep just went off on a topic, I'll save that for another post I think. (Delete, delete, delete, delete)

So moving along, it was good to get things off of my chest. From my brother’s passing, who I have yet to deal with that, to financial issues, to wedding stress, to people that have aggravated me recently due to their lack of compassion for others, to cancer treatment, to just normal day to day. There is a heavy weight on me all of the time.  So this has likely contributed to me not updating my blog longer than usual. My heart simply hasn't been in writing. But hopefully that is changing now.

On another note, my daughter will be going with her dad this weekend. My wonderful fiancé and I will get some time to ourselves for the first time in awhile. It should be very stress relieving and relaxing. I think we will maybe go somewhere like a movie and play some board games, with out the tot taking the tiny pieces. She likes tiny objects.

Finally, today I went to another treatment, sans companion this time. And this round, along with the last, the port access was painless…thank the Lord. Another stressor, as I have mentioned previously.

I had my original Nurse again and the one I met recently. They are both such wonderful women. Quite frankly, they all are so wonderful. Doing what they do, makes me want to cry. To see what they see everyday (like most nurses), but dealing with life and death like they do and having such resolve to stay positive and happy for our benefits and making this process so much easier than it would otherwise be. I can’t thank them enough.

I had a later appointment this time, so no lunch menu, but that’s fine. It’s so flavorless for me. I remember enjoying the food so much more after having my daughter there, so I know it’s not horrible food. It’s not a five star restaurant, but no worse than cafeteria food in school. That’s just my opinion though.

Well I need more coffee and I have to finish getting Melina's bags ready for school and her dads, since insomnia and the head sweats have reared their ugly heads... It's totally sexy to be sweating from the bald head. Blah!

Round 3 Down, But Not Before Adding Fear to Round 4.

I woke up Wednesday morning with anxiety as I had on Monday, the originally scheduled appointment.  I was 6 appointments in and the anxiety about treatment as well as the despair about continued chemo were mounting. I cancelled Monday with elated joy as I realized my cold was still hanging on and I didn’t want to risk getting more sick from chemo with having a cold. I don’t know if it’s a real thing, but I didn’t want to chance it. (Okay, and I really didn’t want to go) My daughter was also sick.

I have been feeling down and depressed the last week and a half about so many things. Again, I hate to turn this blog into something sad and dark, but I think there are these moments for all of us. Some of us do well with treatment the majority of the time with bouts of sadness and some of them of us are doing poorly the majority of time with bouts of happy times. I think I’m somewhere in between, but I didn’t even realize how sad I was until this last week.

The first Taxol was awesome, or so I thought. I realized after the second round that the comparison of Red Devil to Taxol made the first Taxol seem awesome. The second round I started to feel the effects of the Taxol, itself. And for some reason I began to feel depressed.  I didn’t want to leave the house. I know I gained weight again. I feel like no matter what I do, I get nothing done. I worry about my finances and when I return to work. My eyebrows are slowly disappearing as are my eyelashes – and I still haven’t figured out how to do the fake lashes yet. I hate taking showers because I hate touching my body or seeing it at all, and I haven’t even had a mastectomy. Which makes me feel selfish for feeling so sorry for myself when I haven’t experienced the level to which others have. It makes me think of my brother and all that he went through.

I have dreams about him, followed by nightmares of my own fears of death. After conversations with my fiancé I have finally started scheduling my counseling appointments again. I forgot to schedule another one after the holidays. I just don’t know how to grieve the loss of Jake at all at this point because my own cancer came up so quickly after. It’s coming in bits and pieces. My 5 year old randomly cries about her uncle and she wants to give him a hug and a kiss. It breaks my heart.

Anyway, (tears wiped)…back to the appointment. I had my guest of honor all set up for Monday, my bestie Melissa, however, with my cancellation she lost the ability to go with me due to her work schedule. And I knew that was a possibility. Wednesday, I went alone. I had another new nurse that would be accessing my port for the first time, (meaning it was my first time having this particular nurse access my port, which always sends my hands into fits of the nervous sweats). Even with the numbing cream on my skin, it really hurt. And I have a mark now…that’s new.  Anyway, right away I thought, “Great! Next time I’m going to be so afraid of this part.” Quite honestly, I’m always afraid of this part, but now it’s going to be so much worse knowing that it truly can hurt. Tears ran down my cheeks as I knew in that moment that the remaining treatments would bring with it increased anxiety and it was not likely to dissipate.

As I mentioned before there was a mark on my skin. I thought, perhaps it was seeing what was being inserted into the port for the first time ever.  I always squeeze my eyes shut tight to NEVER see and I try to avoid looking at all of the medical equipment laid out in front of them. This time I looked, for some insane reason, and it was in my head. Surely, I freaked myself out.  However, two days later there is a lump and a mark.  A sure sign that something wasn’t done right.  The last time the nurse did an awesome job, and I didn’t feel a thing. I guess I’m paying my dues on that one.

Taxol #2 - Will food taste like crap forever, and why can't I stop eating it if it does?

Round 2.  I had a completely written post, ready to go and publish and then I realized, man it was depressing. I can express all that I’m feeling in a different more entertaining way, but how?

The side effects of Taxol are becoming more obvious now that I’m getting further away from the tough stuff. The biggest thing is still the taste buds. So many foods that I loved that I either no longer love or taste completely weird. I tried a screw driver the other day. Liquor doesn’t really do too much for me these days, but every so often I have to try one…you know, just to see. And it was bland and weird. My bestie told me that she too found that the orange juice tasted strange. Whew. Not just me. So I tried a greyhound. Grapefruit juice strong enough to make any mouth pucker and strong enough for me to taste it? Yep, taste it I certainly did.  It had a hint of grapefruit, a hint of vodka, and a hint of … tuna!!?? Well that isn’t right and most likely isn’t the juice, but my taste buds.

So I give up on enjoying most foods without pouring three pounds of salt on it. On the bright side, dry mouth isn’t as bad. And another bright side with the weird taste buds, I’m having to drink more water again.  Water had fallen to the wayside because I was feeling good and now that I’m not feeling great again, I want the water. It's for the best, I more than need the water.

That is one side effect. The other new thing since being on Taxol is I can’t wear a hat to bed. I’ve been avoiding going bald to bed because of my own insecurities, but apparently the night sweats are happening. Don’t panic, readers. It’s only on my head and only when I wear my hat. Most likely it’s chemopause. (And the nurse's aren't worried yet) I wake up with my hat drenched. Not a lovely look. So I gave up on wearing those to bed and Kevin's fiance is officially bald to him.

For those that are unsure chemopause is like menopause. Happens during chemo and can lead to knocking me into menopause. Which I’m hoping doesn’t happen, but given that I still have 10 weeks left of Taxol, I don’t have high hopes.

And the last side effect to write about is eyebrows.  As in bye bye eyebrows.  I haven’t even learned how to draw them on yet…gulp! I’m sure I can find some youtube videos to help train me. There is still some left, but each shower, they are less and less.

But in all seriousness, I miss my old life before all of this. It's been since September when this all began and I'm just so sick of it all, but I guess I should really be grateful and not complain. And yet I can't help but miss my ignorance...shit if I'm asking for things I think I'd like to go back before Jake got sick and have him still be here too...but then I would ask for dad too... Boo! 

I guess I miss the boring, mundane life of work and home. Not worrying about bills, other than the normal pay check to pay check.  And maybe from time to time going to the doctor for a check up, but having everything be fine. I guess it won't be like that again for a long time. 

So in the meantime, I'll sport some new hair and paint on some eyebrows. And in the near future, I imagine I will try to master the art of fake eyebrows. 

Taxol: I think I got this...

It has been a crazy week since my first treatment of Taxol and I have 11 more weeks of this to go. I brought my mother to this round as my support system since this one fell on a Tuesday and not Kevin's day off.

We arrived on time and everything went the way it usually goes, though the waiting was a bit longer. It was the day after New Years, so they had two days of patients. I was placed (at first) in the most exposed seat in the fusion room, which I was not a fan of, and there was no table for my computer. Life’s problems, right?

I right away started to feel sick and they had literally given me nothing, not even a saline drip. I was moments away from throwing up when she had (during this time) given me Benadryl. This made me so drowsy the nausea faded. I realized that most likely all the horrendous experiences with the red devil were messing with my head and showing up in a very, real, physical reaction.

Actually, before they had even taken me back I was handed my lunch menu and that made me sick. The memories of the lunches eaten before in the fusion room caused my stomach to swirl and head to spin in disgust, even if the food is quite good. And, honestly, it is good but the association to the treatment is more than my brain can bear.

Once I felt better the food came within moments, and the treatment went faster than the previous. If it weren’t for the delays, we may have gotten out of their earlier. Not a complaint, just a reality of the new chemo not taking as long as the first more aggressive treatment.

My ray of sunshine, I didn’t need to have the nulasta pack. Man I gagged just a little at the thought of that. 

It was a huge relief. I would rather do weekly treatments then have to go through that again. I felt nauseated every time the pack would kick on 27 hours after it was placed on my stomach. Once it kicked on it would inject medicine for 45 minutes. Vomit. I didn’t need the steroids anymore either. I had hoped that they were the cause of my heartburn, but turns out I still need to take that Prilosec.

I do forget to take my vitamins now that I have less other medications to take. And I just remembered I didn’t take it today either…oh boy. I also have been waning on the water intake. When you don’t feel as bad you forget, but I’m not so foolish to think that I will feel this good next time as the Red Devil was different each time as well.

With less meds, I hoped for less side effects and true they are less, however, there are some new ones as well. My eyebrows are disappearing.  My head is sweating profusely at night, so I can’t wear the hats like I like to when I sleep. I hear that it’s normal, but it scares me a little as I know cancer causes night sweats. But would I just sweat in one place? A question for the doctor tomorrow or nurse. I only see the doctor once every three weeks now, unless requested.

Oh, wait, there is more. I have extra dry feet and weird discolorations on my fingers and toes (though that kind of started with the Red Devil). It’s super cute. Plus, I feel like I have aged so much. And still, no weight loss. I want to be upset about the lack of weight loss, but (and I may have said this before) this could be the reason I have staved off sickness and/or infections. Maintaining, if not gaining, a glorious overweight weight.

Then the rest of the week I had so many worries. Combatting with how I feel with worrying about my forgetfulness and paying the bills. Let me tell you, chemo brain is a real thing. I have made more mistakes with my bills when on the Red Devil then I realized, and I feel like I’m coming out of that fog and trying to play catch up. I sit here trying to be sure there is nothing we are forgetting. The house is also falling behind in cleaning as Kevin is only one man.

And there is the paperwork in relationship to the treatments to fill out that required a trip to the post office. By 500 pm I’m ready for bed and I’m oversleeping. This week has been quite the opposite in some ways. No insomnia, that’s for sure. Staying awake is the problem.

And the one errand I ran this week that meant more to me than I could do justice with words was a visit to a friend of a friend. I was bestowed two wigs by this woman who she, herself, is battling cancer. However, she isn’t battling like me, she is foregoing her treatment and donating her vast collection of wigs that she never had the chance to use. She felt awesome helping me and I’m eternally grateful to have more options in hair ware. The shorter wigs are much better for more daily wear as the long ones don’t last as long if worn daily. The long one will be for special occasions.

Spending time with this wonderful woman and seeing her strength and spirit makes me realize how lucky I am at this point. I know things could change. I could be in the clear and then not. Or I could live to be 101, but I can only aspire to be as strong and generous as this woman is. I thank her. It seems small, but it really isn’t. She is one of so many women and men and sadly children facing a death sentence and still living her life. Still helping others with the time she has left. It’s incredible. She is incredible.

Another early morning appointment/day tomorrow. My lovely little brother joined me and Melina today for my cousin’s 4-year old’s birthday party, however, the little brother and Melina both have school.  Kevin and I will be dropping them off early in the morning before the next round of chemo. I should be getting my hiney to bed, but I realized I’m about to run into another post. Oops. Told you this week was a little nutty.