Kicking Out Taxol with Relaxation And a Jacuzzi for Two...Sort Of.

I’m so very sorry for the long delay. It’s been a little hectic around here for sure. I feel overwhelmed most days. The wedding is looming as well as the return to work. I’ll need a refresher course in passwords at my desk.

But before that, I’m looking at doing both radiation on the 26^th as well as physical therapy now, but I won’t know anything for sure until Monday when I go in to meet with the oncologist.

The physical therapy came out last week when my fiancé and I got to go to a bed and breakfast that caters to those going through cancer treatment. Though they take anyone as a customer, the woman who runs this B&B gives a, free, three-night stay with meals to those going through active treatment.

As you can see from the pictures below of our stay, Mystic Views (which runs in conjunction with Priceless4Purpose), was a relaxing getaway vacation, with delicious food. I am famously known for my immense hatred for eggs. I won’t even eat French toast most times because I can taste the egg. The only way I have managed to eat eggs is if I have them over easy and dip my toast in the yolk, then toss the rest. But this lovely woman, Cindy, made an Omelet so good I ate the entire thing. Now I couldn’t eat the egg alone, but there was so much wonderfulness inside this Omelet I had nothing to worry about and I inhaled it. Sausage, onions, wild rice, Portobello mushrooms, celery, and cheese. It was heaven in an egg shell.

It has to be said (about the below picture) that it's advertised on the pamphlet for the bed and breakfast, that there is a Jacuzzi for two. Of course when I got there I had to ask her, is this for two MINNESOTA bodies or two ARIZONA bodies. 

I admit, there was some necessary maneuvering needed, but we made it work.  We probably just needed less water than people from Arizona would have needed. 

On the second day there we went antiquing in Nisswa and had a scrumptious pizza at Rafferty’s. Then we went to The Big Axe Brewery and had a Tart Cherry Shandy…yum! 

This was our only adventure. So most of our stay we played games and watched Netflix. I heart Stranger Things!

The stars were amazing all the nights we were there and I was even able to glimpse a shooting star. Kevin got a kick out of the sunsets and sunrises. I only peeked as these as my energy waned in the evening and I slept later than he did in the morning. I will not forget this trip anytime soon. I most certainly worried so little and for me, that is saying a lot.

Though the chemo was done and had been done for a week at that point, my feet had begun to swell, and I could only wear slippers. Not to mention my right arm was in pain. I’m fearing this is lymphedema. This is basically caused by the lumpectomy I had, and the three lymph nodes that were removed. It can cause the swelling of my feet and could possibly swell my arm to twice or more it’s natural size. It’s very rare, but from everything I googled, that’s what this pain sounds like. Another thing it could be is cording. The cause being the same.

Again, I’ll find out next week for sure. In the meantime, I’ve been doing my stretches I found online to help me along. They remind me of 70s workout videos in the sense they aren't as hardcore as the newest workouts tend to be, but I do find that they help my arm to hurt less if I do these once a day. And they aren't meant to be hardcore either, obviously. I mean I can barely put my right arm above my head in a straight line without wincing...screaming...whatever.

The worst part is my engagement ring hasn’t been fitting. I can get it on, but I can’t get it off easily. I worry it will get stuck, so I haven’t been wearing it. I haven’t been eating nearly as much as I was on chemo, but I don’t believe any weight loss has yet to occur…ugh!  The expectation that I had lost weight on chemo has not happened, but rather weight gain which is more common with breast cancer.

I still have the hot flashes and heartburn and I’m still tired, but each day it’s getting better and better. I also have started taking pictures of my head each week to document hair growth. I think it’s growing quickly and maybe I’ll have a pixie hairdo at the wedding, but I’m still going to wear a wig. I wanted long hair at my wedding all my life. At least that is how I always pictured it, and I intend for that to happen. However, I do worry about how well that thing stays on. That could be embarrassing in wedding photos...crooked wig. People just need to not hug me and it should stay on just fine. I mean who is gonna want to hug me at my wedding? Oh yeah, about 200 people. Great. That's what personal attendants are for, right?

After our wonderful get away, it was back to the hospital to set up the radiation process and mark me up. I couldn’t stop the tears that sprung up as I lay there on a machine similar to an MRI. The doctor came in and immediately noticed my upset seeing how I was unable to wipe away the tears with my arms stuck above my head at this point. He asked me what was wrong and all I could say was that it was another new thing and I was just scared.

As I lay there during the simulation I thought of my dearly departed brother and the video my mother took as he rang the bell after his own radiation treatment was completed. There was this proud happy smile on his face as he nervously rang away. And in that moment, remembering his moment, I decided I will NOT be ringing any bell when my radiation is complete. I now see it as bad luck. A moment locked in time taunting us. As I write this I once again cannot stop the tears from rolling down my cheeks. It’s almost been a year since he died, and it still feels like yesterday.

Well enough blubbering for one day, I still have so much to get done in regards to paperwork…it seems never-ending. And that darn kitchen, it still needs more cleaning. My book has not been worked on either, so don’t feel bad blog readers. I neglected both.

All things seem to be coming to a head, so as stressful as it is now, I guess that means that stress is about to dramatically decrease. 

One of those things that adds stress (good and bad) came at another bad time. I had a few ladies from the wedding party come over to help with putting bouquets together. It was really the officiant that did the bulk of it all. Being a wedding planner, she was just better at it anyway. ha ha ha!

In reality, I had just had my last chemo (though I was not aware of that at the time) and I was struggling. Each treatment was getting worse and worse with side effects. (Such as neuropathy, feeling tired, nails starting to pull away from my skin and break and just everything compounding. Anytime I bumped a finger lightly I burst into tears from the pain) This is why the chemo was stopped a bit early. I was to have three more, but we (the oncologist and I) decided against it at this point due to how I was doing. I also have to schedule surgery again to remove the port. I'm not looking forward to that because of how painful the hand IVs are for me. 

Anyway, I was suffering the effects big time at this point, and couldn't do much to help my friend put these together. I was ready to just take the first one she did and work on it at a later date, but she whipped right through them. On a mission to finish them. 

The other bridesmaid there was sick and just as useful as me. I mean between my tiredness and the mad sweating and the other woman looking like death, we didn't leave her many options. I felt so terrible that she had to do this alone, but she really did it quickly and wonderfully, how bad can I feel. Who knows what I would have done to it? And it was greatly appreciated. 

Over time, I know that things will go back to normal. I just hope that they don't go so much back to normal that I take everything for granted. After June I intend to make a lot of changes to my life to hopefully ensure I have a lot of life left. But I also don't want to live in fear and dwell on it either.

At least my child keeps things normal with her sweet nature that turns quickly to meltdowns and tantrums. It helps me to forget everything else when she is driving me nuts like 5 year-olds do.

5 Treatments of Taxol and Counting

I need to focus on writing about my cancer treatments, but lately social media has my blood pressure on the rise. I open up my Facebook account and I immediately begin firing off words in response to shared memes or articles. I’m also not so foolish to believe it’s not the same response or feelings on both sides. Neither of us listening to each other, just wanting to be heard, believing we are right.

Don’t get me wrong, I still won’t be convinced that an AR-15 is a necessary civilian weapon or that food boxes should be a thing for SNAP, but I do know that other people for one reason or another do believe it. And no matter what I say or how I feel, I will not change their feelings on the matter, nor will they change mine. With that in mind, I need to breathe and not allow myself to get worked up about the things I cannot change.

So I digress and return to the current state of my affairs and treatments. Besides avoiding social media unsuccessfully, so that my blood pressure doesn’t sky rocket, I have many other symptoms rearing their ugly heads each week. Some are repeat visitors and sometimes there are new ones, and sometimes there are sporadic returns of other side effects. Now I'm focused on things I can change...oh wait...I can't control any of these things either. Sure I can make them easier to deal with. Some of them anyway, but overall I'm completely out of the control.

My feet feel fuzzy and numb. My finger nails are misshaped and are extremely tender for a day or two.  After that then they just become mildly tender. Both stem from the neuropathy, which they are closely monitoring as I count down the chemo treatments. My teeth hurt, even though I brush and floss every day. My head aches from day to day as will my body on certain days. My ankles feel swollen and hurt too. Not to mention my constant hot to cold flashes at night. It’s miserable. There is a soreness creeps out from the inner right arm and runs down to my thumb and hand. Sometimes I wonder if I’m dehydrated, but I don’t believe that is it. I believe it’s in relation to the lumpectomy (from what I’ve read) and it will likely spring up from time to time for a while.

I begin to feel guilty on these days as I feel I neglect my family. I neglect my chores and paperwork and my book writing. All the other symptoms have stayed the same for the most part or increased.  Whatever you call this wonderful life of poison. But I do it with a purpose, so I won’t give up. 😉 

Today is a day where my lovely child will spend one more day with her father and we can get some more things, done, but it’s not a great day for me physically and I don’t know that I will move around much once again.

The treatment this week was also the same old same old, as I mentioned previously. Initially, I panicked as it appeared that the nurse who had hurt me with the port access last time, would be the one doing it again this week, but luckily she read my apprehension and got a different nurse to do it. It was once again pain free. Whew!

I went solo again to the appointment as well, and played on the computer while they administered the medicine. I once again fought off the urge to pass out under the influence of the Benadryl. I just refuse to rest while I’m there. I like to drink my coffee or tea and type away or watch Netflix.

HOT FLASH!!!! It’s awful. I pull my hat off and it feels like instant relief.

I have 5 weeks or 5 treatments left before the radiation starts. I can’t wait. I can’t wait to feel normal. I know I will be worried for the next four years or so that this will return, but I can’t wait to not need heart burn meds, or for food to taste normal, or for hair to grow back. I can’t wait (sadly) to have a cocktail and not have it make me feel yucky instantly. I am grateful that I have just a few appointments left of this. I am grateful that these appointments are designed to give me the best odds of survival. Now I just need to take part and start doing things to help the medicine. You know, like take better care of myself.

Seriously, another hot flash? Ugh!  It's every 30 minutes.

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.