Author: KimJHA

Not sure if it was my colon causing the strange dreams or not, but between the two, I didn’t sleep much from the time I went to bed and 2 AM when I finally gave into the spasm in my gut and headed for the bathroom. Despite some relief at that point I knew this would continue so gently closed our bedroom door and set myself up in my corner of the sofa to knit and watch House of Cards.

By 3 AM I had taken some Imodium.   I fell asleep soon after starting a fourth episode.  I woke before it finished and realized hubby was in the bathroom starting his morning routine.  When he came out he told me to go lay down again, try to get more sleep. But did I listen?  I had every intention of doing just that, but a news alert came across my phone – The Orionides meteor showers are visible this weekend. With peak viewing in the pre-dawn hours this morning. Out the back door I went.

The toothless wonder cat followed me to the back of the yard where there is the least amount of light pollution, and I stood there looking up at Orion, hoping to see a meteor or two.  I saw three before the sun slowly brightened the sky to the east, the stars winking out, edging closer and closer to the Orion constellation to the west.  The whole time the cat was complaining to me how empty his stomach was.  Once the sky had lighted to the point I knew I would not be able see any more meteors with the naked eye, I heard the first crow stir.  The wind is very active this morning and I can also hear the occasional soft note or two from our sheltered wind chime.  Took a quick picture of the sunrise, then told the toothless wonder cat OK, let’s get you some early breakfast.  He was more than happy to lead me back to the house to feed him.

He started to eat in the kitchen, but after just a few bites walked back to the back door to finish being fed where he prefers, on the lounger in the covered patio.

We headed out, me with all his food in hand, and got ourselves situated to finish his breakfast.  As the sky continued to lighten, I heard the first squirrel chatter his wake up call, and the dominant Hummer chirped a quick hello before getting his first drink of the morning from one of the two feeders I keep just for him and his allowed entourage (male humming birds are notoriously territorial).

It didn’t take the wonder cat long to eat his fill, then spend a few moments grooming, before he was curled up and purring in my lap, as I sat there listening to the neighborhood wake up.  The calling birds were the next to sound, and then the Jays.  The neighbors bathroom light snapped on.  I start to hear more traffic noises, as the trees continue to whisper their ancient knowledge and secrets in the morning breeze.

It amazes me how quickly I have become a morning person.  52 years of being a night owl, and now a little over a month of waking up before dawn, just like that.  No alarm needed.  I wonder what the coming months will bring?

I do need to get my CBC blood draw this morning in preparation for my second cycle of chemo.  My cousin arrives today from Nothern California to spend the weekend with me, with us, with me.  A nap will definitely be a must today!  Hubby had said he’ll take the spare mattress in the other room so us girls can have our girl time for the “whole” weekend.  It will be like old times, sharing a bed on family trips, and our WWT’s (my family can’t spell – the very first Wisnia Women’s Retreat was dubbed WWT, and it has stuck…)  I’m looking forward to having one on one time with her.  I’m excited and yet kind of bummed it’s this weekend though, and wonder how quickly I can get her to come back again.  I really want her help once I lose my eyelashes so she can teach me to apply fake ones.  That is something sisters do and she’s my sister.  I want to share the amusement of bad placement with her the most.  As I have previously said, I really don’t care about the rest of my hair, just my eyelashes!  It should start falling out here in a few days, probably Monday because my cousin leaves Sunday evening.

I finished a book my mother sent me written by a breast cancer survivor.  It was about her spiritual and emotional journey through her cancer.  There were several things in her book that stood out for me.

1. 1.  I need to update my will 
   2. She wrote about how she learned to enjoy the little things and to not get so upset/frustrated over minor issues, like being late. Which made me think about the Bucket List my husband wants me to write. Even as I was reading her epiphany of learning to appreciate the little things – noticing the birds in your yard, how different flowers smell, and all that, I was thinking I already do this! I do this on a daily  basis, multiple times a day. I’m the one taking pictures of the morning dew on the roof of my car because the way the sun hits it is stunningly beautiful, making me late for work; or sitting for hours with the cat in the backyard just listening to and watching what is going on around me, the sounds of my neighborhood telling me their stories.I’m the one that sees a dandelion seed ball, and in my head, immediately squeals with delight – WISHES!  I’m the one taking a 10 minute video of a itty, bitty jumping spider stalking a wasp, 3 time it’s size,  that I came across one afternoon while watering, narrating the action like it was Mutual if Omaha’s Animal Kingdom.  I’ve never felt the need for a Bucket List, I live my life everyday appreciating the moments of beauty and the abundance of people I love, that I have been blessed with so richly.   And I always do my best to not sweat the petty things.  (And not pet the sweaty things!)
   3. The author noted for those who are friends and family of the breast cancer patient to remember chemo is a long journey, but radiation treatment makes it  even longer. Be there for the whole journey.  This stood out to me as I know I do have a long haul ahead. 6 more weeks of phase one of chemo, then 12 weeks of phase two, and that is as long as by blood counts stay up. If they dip too low and stay low coming into my next cycle, that cycle will be delayed (come on Neulasta,  work for me!).  Once I finish chemo it’s on to surgery and from there, anywhere from 6 to 12 weeks of radiation 5 days a week.  And radiation will not start until I am healed enough from surgery to have my arm immobilized above my head for 30 minutes at a time. (Usually about 4 weeks). So I do worry about support network fatigue.  I worry that when I need them the most they will all be ready to get on with their lives, while I’m still trudging through mine.  I don’t want to be a burden, but I am asking you all to please help me with my journey for the long haul.  And I do this knowing I can’t say or do enough to thank you for all that support. Even now, there are no words encompassing enough to express my gratitude.

Life is the little things

As I do almost every morning upon waking, I feel the lump.  Some of you may have noticed when I first started this, I was capitalizing T and L in the lump, but I made a conscience decision to not let the lump have that much control in my life.  I should not give the lump that much emphasis, meaning or consideration.  It is an invader, extraneous, undesirable, and I will do EVERYTHING in my power to kill it.  It is nothing, lower than fungi, which the middle child insists is the lowest of life forms on this planet.

So, as I was palpating the lump it felt smaller,  not just softer.  I held my breath, and started over again.  I start on the left edge and slowly move my fingers towards the right, to the other edge.  Yes, that does not seem as wide.  I start over again, this time leaving one finger tip to mark the left edge, and slowly walk the next finger towards the right edge and plant it.  I then bring in my other hand to lay a finger between the two to get a “knuckle” measurement.  Yes, the width is smaller.  I repeat these steps for the length, same process, knuckle measurement.  I am not imagining this, the lump is smaller!

It was overnight!  I swear, I palpate the lump multiple times a day.  It’s SMALLER!!!!!  I jumped up and went to find hubby.  He was already in his office working.  I always knock when he’s in his office, I don’t want to disturb a train of thought or something he’s having to concentrate on to get correct. He acknowledged and asked why I was there before 6 AM.  I walk right up to him raise my right arm and said feel.  He looked at me slightly confused, but did as I told him.

He gently, tenderly starts palpating the lump.   He takes his time, and just as I had done, finds an edge and works his way to the other.  He starts over, repeats what he has just done.  He then looks up at me after many seconds of this and with astonishment in his eyes, he says “It’s smaller!”  Yes, yes it is!  It’s smaller!!!!!  We laugh and hug.

It’s smaller, it’s smaller, it’s smaller. (This is said in a sing song voice!)  I want to sing, I want to dance, I want to shout it from the mountain tops!  The damn fucking lump is SMALLER!

Now, I need to get on the treadmill and get some exercise before I go clean the bathroom and take a shower (while trying to remember to not face the water, and I dare you to try that, it’s not easy!).

It’s smaller!!!!

Life is celebration.

First let me start off with we went to our respective Support Groups last night.  One of the girls in my group started her second phase of chemo – the Taxol.  In my breast book Dr. Love does touch on “Chemo Brain”, and this has come up in group as well.  It has been a slight concern for me as in the book it stated some women experience such a change in brain chemistry/physiology (and this has been documented with MRI’s etc., there are physical changes to the brain from chemo), that they have to relearn how they work, they can no longer multi-task, and their concentration is off, and they never get back to where they were functionally prior to chemo.

This scares me.  It scared me even more last night when the one gal who is now on the Taxol portion of her chemo was expressing her difficulties that started the same day as her first cycle with memory, finding her words, and keeping a train of thought going.   When we left group and hubby and I started comparing notes, the husband of this wonderfully bright lady was also expressing concern at how quickly it went from – “Ha ha, chemo brain, to this shit is a serious issue”.

I have been doing my Crossword Puzzles, and brain training games almost daily so I can try and retrain my brain as I am losing function in hopes of gaining back what ever I lose due to Chemo.  But after watching “H” struggle so much last night to string words together and losing words as she was saying them, I have become extra worried as to what my outcome will be.

Hubby and I discussed this as well after groups were over.  He said her “Chemo Brain” is causing fights between them as well.  We have agreed to maintain open communication.  He also brought up my blog here to his group.  When he was asked if he reads it, he told his group no, I’m giving her the space to vent, that way she can talk bad about me all she wants and there are no repercussions.  I keep telling him it is OK for him to read this blog.  We agreed, even if it gets hard to communicate, we will continue to keep up our dialog.  And I reminded him that even though I have this blog to help me express my feelings, and to keep everyone updated on my progress, I will still have days when I will just need to breakdown, I need him to accept me on those days and not try to “fix” it.  He agreed he would allow me those days.

One of my dear friends sent me a PM last night, she had just finished catching up on the blog.  She told me she laughed, she cried, and totally caught up on my “boob thoughts”.   So much so that when she switched over to the following ad, she read it as Boob-toberfest!  Bwaahahahahahaha!!!

Cracked me up!  We should have a Boob-toberfest!  It is Breast Cancer Awareness month.  I’d drink to that, if I could taste it…..

This afternoon we meet the Plastic Surgeon and discuss what my surgical options will be and I can get some information on reconstruction if that becomes an option.  Yes, I am still  only looking at a lumpectomy, and if I actually stay with a lumpectomy I have to decide if I have additional surgery to make both breasts match.  If I end up having to have a mastectomy, again, I have to decide if I want reconstruction.   And yes, mastectomy could still be on the table.  Right now we’re all planning on lumpectomy, but quite frankly things could change between now and the end of chemo treatments that would warrant the mastectomy.  I need to understand what my options are and if I really want to go through extra surgeries.

Will let you all know how this goes after we’re done.

Life is …

Update:

Met with the Plastic Surgeon, saw some graphic photos of mastectomy and lumpectomy before and afters.  We spoke about radiation, I will have to have radiation, and what this does to your skin.  We were shown pictures of reconstruction after radiation.  Plastic Surgeon emphasized reconstruction or lift really must be done at the same time as my primary surgery.

After seeing all of the photos and the doctor explaining what can happen, and how delay of any reconstruction until after radiation makes this much harder to create a good looking repair, hubby and I discussed this on the way home.  Even if I have to have a mastectomy I will go with reconstruction.

Even after reading all the articles from O Magazine, I think I would go with a beautiful tattoo to emphasize my new beauty and power rather than no boob/half boob.  Hubby doesn’t know that part though.  He made me promise years ago no new tattoos, and I have kept that promise.  But for this, I might need to break that promise.  This is something we will have to discuss.  When we get closer to that decision I will bring it up.  No use arguing over it for the next 5 months, just causing friction for something I am not sure I will do yet.

So that happened, and I guess this means no matter the final outcome of surgery, there will be two nice boobies at the end of it.  That is my power, to choose to keep boobies and I do choose this outcome.

Dr. Goldberg advised as long as surgery remains as lumpectomy the total surgery should take about 4 hours, no drains and I could possibly go home same day.  That is not going to happen though, I have an insurance rider that pays out only after overnight hospitalization, so that will happen.  We will still have to discuss what happens if no clean margins are able to be obtained and I have to have a mastectomy, but we have time.  I still have 3 more cycles of phase 1 and 12 cycles of phase 2 to get through first.

Life is all about the boobs…

It’s always the little things.  The hand on your shoulder, as you attempt something new, that silently urges you on.  The quick embrace from a friend or co-worker that quickly celebrates a victory with you.  The calm hand that helps you face a difficult situation, or the quick rub by someone letting you know you’ve got this.

Those quick little emails from someone letting you know you’re doing a good job, or thanking you for helping them.  The sly look from someone you know is in your corner, but not sharing that with the rest of the world. The note in snail mail just to send you some kind words, or encouragement.  The social networks we build physically and electronically that boost us through our daily lives.  Even our phone calls made during business or pleasure where we all take a moment to connect.

All these little chance encounters daily make our journey, be it light or heavy, easier to bear.  Those connections we can take for granted in the midst of our daily lives.  Today, I was abundantly reminded how much all my connections mean to me, and how I am so grateful to have them in my life.  And I will continue to use all of my connections, no matter how small or insignificant they may seem to others, to help me through this journey.

Today was my first follow up with my Oncologist since starting treatment.  We discussed how my first cycle went, what we learned, how we plan to manage the aftereffects of each cycle.  We discussed what happens if my lump doesn’t shrink.  She palpated the lump as well and asked me beforehand if I thought is had shrunk any.  No, not yet.  She agreed, it’s still the same size, but it does feel slightly softer now.  Yes, that is the word, softer.  She told us that one of her patients was concerned as they got closer and closer to surgery and her lump had not seemed to shrink at all.  They went into surgery with the determination “we shall see what we shall see…”.   Even though she still had a lump, all evidence of cancer was completely gone.  This helps.  We also discussed my bowels and the multi-year journey it took to teach them to behave normally.  She apologized, but until we’re done with this trek, Imodium and possibly other remedies to get through this process will remain active protocols for me until we’re done, and then, will have to retrain my bowels again.  Honey – get the bio-hazard placard for the front door.

When we arrived home, mail had been delivered.  As hubby sorted, I started opening what I had received – two small packages and a letter.

I opened the first package, from my mother.  It contained a card and a little pillow with Velcro straps.  It was a gift from one of her new friends she has made in her new home.  It was his daughters, she used it to cushion her port from the seat belt when she was driving.   His daughter lost her battle with metastatic breast cancer earlier this year.  I have not mentioned this yet, but the one time I did drive myself after my port was installed was so uncomfortable, I have insisted that my husband be my chauffeur since.   To receive this little gift today, was a reminder of all my connections and how they are always there to boost me when I am need.  I shed a silent tear of gratitude and thanked God for allowing me to have so many wonderful people in my life who care.  I will gladly use this cushion with all the love and support it was given, and thank the wonderful women who lost her battle for helping me with mine.

Next, was a little package from a nephew and his wife.  If you really want to get technical, he’s my step-nephew, but our family has never looked at that distinction.  You are a member of this family, like it or not.  You will be loved, and we will rally around you in time of need, period.  No ifs, ands or buts about it.  We may fight with you as well, call you out, call you names, be angrier than a wet hen, but we will still love you.  Family is family, blood or not. This nephew is a Police Officer.  He and his wife sent me his Breast Cancer Awareness Patch with a quick note they have my back.  Again, the silent tears and the all-encompassing gratefulness I have for my family.  They mean so much to me and I know without them I would not be who I am today.

The letter was also from my mother, who took the time to send me articles from the latest O Magazine.  I used to have a subscription but I let it lapse when I realized my monthly magazines were piling up and I didn’t have the time to read them.  Due to this being Breast Cancer Awareness Month, they had several different write ups on the subject.  All of which I devoured while standing by the kitchen table, and again, all reminded me I am on the correct path.

You can read these articles here

Here

Here

and here

Despite the monsters that lurk in the dark, and as my other mom just reminded me, turn on the lights if there are monsters, I am back in the light, and ready for the next cycle to start.  Thank G-D it’s next week!

Life is Gratitude

As much as I made fun of my smelly predicament, and it has reached some most foul proportions of stench, worse than an 18-month old, non-potty trained boy, with explosive diarrhea, that has a penchant for Milk Bones (yes, the middle child, of course, who else…), mine has taken on the stench of having had a dinosaur die in my colon a million years ago.

That said, this has continued into the night.  I’ve finally given up on attempting to sleep as I am up every 45 minutes to an hour back on the “throne”.  I have now gone back over all the specific paperwork we received from Chemo School.  I knew to stock up on Coconut Water as this helps with dehydration, but I figured it would be more from vomiting not the diarrhea.  I’m currently sipping my first pint until hubby wakes up and he can run to the store and get me some Imodium.  I thought for sure we had some or I would have re-stocked that as well prior to this week.  If we have it, I can’t find it.  My “school work” says to take Imodium and then to call the office.  I have an appointment Monday with my Oncologist, think I’ll take today to see what the Imodium does, and if that doesn’t help will definitely be talking to Dr. Sikaria about it tomorrow.

On the bright side, BBC is playing Planet Earth so I am greatly entertained.  This very early morning it’s Blue Planet – about our oceans and all the animals that live there and how.

I’m also thinking that since this has been such a bad night for this Chemo Girl, that maybe somewhere out there some other Chemo Girl is having an easier night.  I sure hope so.  One of us should at least get some sleep…

Life is runny….

First, let me warn you, I’ll be getting graphic about bodily functions…

Friday was a good day, last day of the first cycle of chemo to take all the different anti-nausea meds, and I stopped taking the prophylactic Tylenol to counter effects of possible bone pain from the Neulasta.

I still don’t feel comfortable enough to feel safe driving myself around, so hubby again graciously agreed to shuttle me to the Oncology office to pick up leave paperwork that the Patient Advocate and filled out for me, and then head over first to my office, so I could pick up my lunch bag that I had left in my desk and to pay for a square that I “purchased” to support the Customer Service Manager’s daughter’s softball team.  They put together a chart to track scores during the playoffs and winners get a certain amount of return.  I always support her fund raisers.   After that I wanted him to take me by our dispatch satellite location where our HR is located so I could hand off all the FMLA paperwork.  And I could catch up with her on what has been going on in her life.  Son with some growing pain issues, that have been pretty serious, and her own medical issues with her Thyroid and the resulting traumas from that surgery that have been making her life miserable.

All stops were good, and it really helped  me feel more normal, but it did wear me out.  I fell asleep in the car on the way back.  But is was still very nice to add something normal to my day other than meds and feeling tired, and talking about Chemo.

When we got home I took the evening feeding of the cat, it was nice to sit outside with him for a few hours.  I have not done this since my first cycle of chemo started.

I was perusing Facebook later last night and ended up in a “Poke” war with two friends.  It was funny and making me laugh, but it was late so I had to post “I’ve had a nap, I can keep this up for about 5 minutes!”

Then I really did crash.  It was a day I didn’t have a bowel movement, and I was feeling pained, so asked Hubby to just hold me a while when we went to bed.  He didn’t ask any questions, just held me while we fell asleep.

This is where I start to get graphic…

I am a normally 2x a day bowel movement type person.  Since Tuesday, this has drastically changed to every other day.  And it hurts the days I don’t have a bowel movement.  It took me a long time to regulate my gut to two times a day.  I suffer from mild IBS with constipation, so worked with my doctors for years to get me to a comfortable place when it comes to pooping!  To make it worse, now when I do my pooping, it is ATOMIC poop!  OMG!!!  It overpowers EVERYTHING.  Poo-pourri doesn’t stand a chance against my now atomically chemo bathed, foul-stenched bowel movements.  It also overpowers the Febreeze air freshener sprayed after the fact and the double flush to rid the bowl of the extra amounts of Poo-Pourri added prior to sitting!

I think I’m going to have to add a HAZARD Placard to our front door as warning to any one who wants to visit on the days I can have a bowel movement.

So as fair warning, if you come visit on a pooping day, I have no control over this and I apologize profusely!

Today, we’re going to Costco… Rx’s to pick up, and hubby wants to replace the Microwave.  It’s stained beyond recognition, not even my normal explode a lemon in there cleans it up.  It still works, he just can’t stand looking at all the brown staining of the inside.  He also want’s a soft serve swirl.  Away we go!

Life is smelly!

Woke up this morning, feeling off and shaky.  Still tired, but I pushed through this, made myself eat some breakfast, oatmeal with dried blueberries added and a bit of honey and cream.  This is something I would normally love to eat, today it was ok.  I could still taste it mostly, just a little off, and it just doesn’t feel good to eat.  I needed to just veg for a bit, then logged in clean up my mail.  That helped get my mind off how I was feeling, but it was very draining.

I had a nice surprise call from our “red-headed step daughter”.  She happened to be temping at a company I had sent an email too about in invoice I was disputing before I went on leave.  She saw my name and number and tried to call me at work.  She found out I’m home going through “treatment”, so she called me on my cell.  It was so nice to hear from her again.  She’s going to call me back later.

Once I was done with all that, I decided I wanted a shower and to take a walk at the beach.  I needed to pick up some leave paperwork from the Oncology of office, so this was a good excuse to have hubby take me out.  Didn’t feel comfortable with trying to do this myself.

I took the shower, even though I have to keep my back to the water, which I thought would be easy (not as easy as I thought, I had to constantly remind myself to not turn around), but it felt good to wash under running water, not with just a washcloth.

I made myself some lunch – Chicken Noodle soup that my lovely daughter made for me.  Again, I still can taste, but I am noticing a difference already.  Added more pepper to the soup to help with the flavor, and of course I get a pepper flake or two get stuck to my tonsils or something, making me cough.  Wouldn’t be lunch without a coughing fit!

Hubby got ready and then we went off to run the errands and take that walk at the beach.  It wasn’t very long but it was enough to help me feel a little better.  I felt better being out for a bit.

We stopped at the grocery store as hubby needed just a few things, fresh fruit, some cookies, pop-tarts, and more lettuce for salads.  I picked up a red onion, couple tomatoes, some lox and I folded, I got a small box of red raspberry pop-tarts….  Maybe I’ll try one of those later.

When we got home I started to scrambled some eggs, and plopped in a few chunks of cream cheese, some bits of locks and added dill to the mix.  Topped my scramble with some chopped red onion and tomato.  It tasted good, but not what I was expecting.  Still tasting, but I can tell it’s slightly off.  Now I just feel like I shouldn’t have eaten.  But I know I need the protein.

I’m tired, still feeling a little shaky, even after the outing and food.  But I can’t complain too much if this is the worse it gets.  Chilling on the sofa is not so bad.  I’ll sure get a lot of knitting done!

Life is curious…

First let me start off with last night was not fun, as I indicated in my update to yesterday’s initial post, I retained fluid instead of eliminating it as should have happened.  I felt like crap.  I ordered an Uber for Hubby to go pick up my car from the repair shop, daughter came over to make the pot of chicken soup I was going to make, and I called the nurse at my oncology office and advised I was swelling.  Daughter arrived, hubby got back with my car, and they took off to Costco to get the diuretic Rx.

While they were gone, I suddenly could not take wearing so much clothing.  I just felt trapped, constricted, like I needed to be out of my body almost.  Went and changed into my Captain America PJ’s, I needed some super hero strength.  My head was still on the verge of full blown migraine, but I noticed when I would put just a little pressure around it that helped.  On went the new cap I had just finished.  I felt somewhat better.

Took the diuretic as soon as they got home, but stomach was still not happy with me.  I found myself sitting on the edge of the sofa with my hands rubbing the top of the ottoman I has been using to prop up my legs, and gently rocking back and forth.  That seemed to help me feel somewhat better.  Laying down did not help, nor did just sitting.  Walking/pacing was no good as that just intensified the overall yuck factor.

About 9:30 I was exhausted again, but too agitated still to sleep.  Took my first dose of Olanzapine and waited for it to kick in.  Went to bed shortly thereafter. Alarm I set on my phone went off at 12:35 am to remind me to take the Zofran, lo and behold I had to pee!  It felt sooooo good to pee.  When my husband got up later, he checked on me, yes, I am good, and went promptly back to sleep.  Woke up from a reminder alarm to send a weekly email at work, and felt so much better and had to pee again!

My head no longer hurts, feeling a bit drained, like I could curl up and fall right back to sleep.

Now for the good news – we reviewed my genetic testing results today.  I was tested for 36 different gene mutations that could indicate hereditary risk to various cancers and/or syndromes.

Results indicate I have two gene mutations with VUS – Variation with Unknown Significance.  Both genes are linked to Colon Cancers, and I do have regular colonoscopies, so I am covered.  When you receive a VUS designation, the recommendation is just to monitor under regular physician supervision, no additional therapies or testing is recommended at this time as they do not know what these mutations relate too, if anything.   Every other gene tested came back negative for any type of mutation.

No one else in the family needs to be tested either.  Such a great outcome!

Now, I think I might want to try eating a bit of breakfast and drink a cup of mint tea.  And wait to see what else these mighty fine chemo warrior drugs try to do to me.  Last night I was envisioning a mercenary Orcan army that once they have the blood lust, can’t tell the difference between good and bad cells, so they attacked them all while I yelled at them from my high observation spot, trying to direct the murderous hoard to The Lump.  That was my meditation to fall asleep.  It was a gruesome mediation, but strangely uplifting.  Whatever works!

Life is strange…

Update

Yesterday one of the last things done at my chemo treatment was to apply a timed release of Neulasta to my arm.  The instructions were it would blink a green light for the next 27 hours, then it would sound a chime of beeps, and the dose of Neulasta that they had primed it with.  The unit would take about 45 minutes to administer the timed release dose.  After the light went out I could remove the applied “disc”.

Right after the applied the disc, it sounded a beep, beep, beep and then it injected a catheter into my arm.  Oh!  Nurse told me oops forgot to warn you, yes the catheter goes in now.  Ok, now I know.  As I was sitting here just being tired today, all day, I heard the ping, ping, ping and then it started whirring, worked like a charm  I took some Tylenol about an hour later to get ahead of any bone pain that might try to kick in.  I loved that I could post a picture on Facebook saying I had “the machine that goes ping!”  Love Monty Python.

Nurse from Oncology office called this afternoon to see how I was doing.  Told her the saga of  not peeing, and how 6 hours after taking the diuretic I was peeing again.  She agreed that the water retention was the culprit of making me feel so crappy.  Today no nausea, just super tired.  Nurse was happy with how I am dealing.  We shall see what tomorrow brings. One day at a time, one day at a time.  TCST – Treatable, Cureable, Survivable and Temporary.

Oh and I forgot to mention, I had flowers waiting for me when I got home from Chemo yesterday.  My wonderful cousin loves me so much!

We arrived at my doctors office at the appointed time, and dropped of the FMLA paperwork with the Patient Advocate and told her I would come pick it up.  I still need to fill out my disability paperwork too, so I can get some payment while I’m off.

I packed my new chemo bag with some knitting and my iPad all set up and ready to go so I can start watching the new season of Outlander.  Nurse checked out my port, asked if it was still tender, yes, just a bit.  She numbed my with cold spray, on the count of three, take a deep breath, and in she went with the hook up.  Not too bad.  First they flush the port with saline, and insure I still have blood return.  Check, all systems go.

Next, because I agreed to be part of a study, she took a syringe of blood/saline to insure the tubes of blood she needed for the study were not diluted.  Then she took two vials of blood to send off to the study.  Then the first anti-nausea drug was administered, that was a 30 minute drip.  Then the next anti-nausea drug was administered, also another 30 minutes.

Next came the first chemotherapy drug.  This is the one that will make my urine pink to red for the next day or two.  It has to be pushed in manually as the nurse has to check after every 5 ml to insure I am still getting blood return through the port.  They do not want this drug mixing directly into tissue.  It’s very toxic and will kill any soft tissue cells it comes in direct contact with, so isn’t that special!

Once we were done pushing that in through my port hook up, my second chemotherapy drug was hung and plugged into my IV.  This one would take 40 minutes to administer.  I took the time to use the restroom, and yup, pink urine.

I finished my first chemo hat while there, watching Outlander and knitting.  I had to drink 2 quarts of Gatorade while there to insure I pumped enough fluids into me to flush the second chemotherapy drug out as quickly as possible.  This one can irritate my bladder so I need to make sure I urinate every few hours.

We need to call if I drink all this fluid, but it doesn’t come out, they will get me a diuretic.  Evidently this could happen, one of the anti-nausea drugs included a steroid.   The Neulasta disc was placed on the back of my left arm.  around 3 PM tomorrow it will activate and take about 45 minutes to deliver a dose of Neulasta to me.  Once it’s done I can remove the disc.  I need to take it back with me the next time so we can dispose of it correctly in their sharps bin.

Done shortly after noon, and we headed back home.  I drank some more and ate a small salad for lunch.  I went to remove my jewelry and my fingers are already swelling.  I was getting ready to check in with my boss and all of a sudden I had to sleep.  I had no choice in the matter.  So I laid down on our chaise lounge and passed out.  I  woke over an hour later feeling…  weird.  I feel fuzzy, tired, and have a very strong metal taste in my mouth.

I still have to make a big pot of chicken noodle soup.  I’m not sure I can do this now.  Not sure I can stand up for that long.  I feel weak.  I have not urinated for over 2 hours, and I don’t feel like I need to pee.  Great….  My head feels like I could have a headache come on any moment.  I know one of the anti-nausea drugs can contribute to migraines.

Day 1 and now I’m desperately reminding my self silently TCST – Treatable, Cureable, Survivable, TEMPORARY!

Update:

 

Not feeling so good, for a moment or two there after I started moving around I felt like I would be sick.  Took my first Zofran pill.  Husband asked if I still felt up to going to pick up my car from the repair shop.  Of course the headliner broke this past week and based on all the info we had, we figured I’d not start feeling bad until tomorrow at the earliest, so picking up the car tonight before heading off to our respective Support Groups, would be no problem.   This is what I get for making such grandiose plans for the first day of chemo.  G-d has laughed and said, “you think?”.

Now that I am sitting still again, only feel tired and have the chemo mouth.  I ordered up an Uber for Hubby to get the car.  Daughter is on her way over to make my soup for me, and the Doctors office has called in an Rx for a diuretic, and told me to back off on the amount of fluid intake I have been doing, Donna said not to throw off my electrolytes, and I also need to eat a banana every time I take one of the diuretics.

Hubby has already brought back the car, now he and daughter are off to get my new Rx.  Me, I’m going to sit here and watch TV, pray the headache I feel threatening just stays that way, and not move.  Movement is bad.