chemo

All posts tagged chemo

Cancer Updates continue….

Published May 29, 2018 by lynn k scott

About a month ago, I picked up a part-time job waiting tables on the weekends.  I work a day job, Monday through Friday and then started waiting tables; working seven days a week.

I admit, I don’t eat the best on the weekends, with having to be to work at 7 and off around 3:30.  Sure, I could eat on my break, but 1) I don’t want to waste the money to buy the food I serve and 2) it’s not really gluten-free and I don’t want to risk having a reaction with a packed cafe.

After I got off work on Sunday, I was very dizzy.  It continued to get worse.  I tried sleeping it off and was barely able to get out of bed.  This continued into Monday, which I thankfully had off.  I had to hold my daughter’s hand for stability, just to walk when we went out of the house.

My husband and I debated if I should go to the hospital.  I know it’s related to extremely low iron levels.  My anemia is taking forever to get under control and I am not ready to admit I need an IV transfusion.  In part, because my veins roll and collapse and IVs (or even blood draws) are extremely challenging.  Let’s not mention, how I despise doctors and hospitals and my oncologist and I are still aren’t speaking.

I wasn’t sure I was going to be able to drive to work this morning.  It was really bad and scary yesterday.  I reluctantly emailed my part-time job, explained the situation and stated as an ADA accommodation, I can only work Saturdays now.  I will use Sunday as a day of rest.  Even though chemo is completed, my body isn’t as healed as I had hoped.  I will be picking up more iron pills, as I cannot skip taking them or I will end up back in the hospital.

The silver lining is I will be able to return to attending church on a regular basis.  I have missed that.  It’s important to have fellowship on a consistent basis.

 

 

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Cancer Journey: Part 11

Published April 6, 2018 by lynn k scott

It’s been a while since I’ve updated.  I haven’t been able to bring myself to do so.  I’m at the end of my treatment; or so I’m told.  I have 3 days left of meds and I won’t be taking them.  I’m OVER IT!

I’m over people asking me what I’ve done to my hands.  Depending on the person, I just say it’s a medication side effect or my chemo meds did this.  Funny, doctors couldn’t be bothered to tell me how my hands and feet would dry out.  How my skin would peel off in strips (off my feet).  How my hands would crack, bust open and make using my using my hands a luxury.  Can’t even open a bag of dog treats when my fingers have sores on them.  You truly have no idea how much you use your thumbs; until you can’t!

I’m tired of “that look” people give me.  They know I have cancer but the pity look sucks.  I haven’t changed but am now seen as my disease and not the person I was.  I’ve cancelled my upcoming oncology appointment.   Why go?  For her to ask me the same questions she’s asked for the last 6 months?  For her now to tell me to come back in 3 months?  For me to remain in limbo if the cancer is still there or if the poison of chemo actually worked?  I’d rather not waste my time or what little money I have left. I’ll go next month, if I feel up to it.

I have testing that still has to be done and I just don’t want to do it.  Let’s not mention I can’t afford it.  Sutter Health Plus is a joke of insurance.  There are no native-English speaking, female oncologists in my area.  If the insurance is offered for my area, I should have the ability to see a doctor who makes me feel somewhat comfortable.  I should be able to understand her.  I shouldn’t have to discuss very intimate details with a male doctor.  I can waste time traveling over 30-90 minutes away from my home, just to receive the proper care I should already be getting.

I have learned the medical profession has no empathy.  They see cancer patients, day in and day out.  It’s their routine.  They don’t live our lives or suffer our side effects.  A few looks of pity from nurses; maybe.  Doctors just don’t care.  They have a bunch of patients to see and you’re just one of them.

I am angry.  I know the medication has played a role in this.  My emotions are all over the map and I can’t keep them in check.  I have given in to the anger and just want to be left alone.  I have been here before.  It’s a scary place and hard to leave.  I’m pushing people away.  I have deactivated Facebook; for now.  I just don’t want to interact with anyone.

I am creating a bucket list.  I doubt any of it will ever happen. It’s truly the only thing I look forward to; regardless if the items are mostly pipe dreams.  I just continue to work, day in and day out, as if nothing is wrong with me.  I have taken one, half-day, since I started chemo.  The rest of the time, I have been at work.

I continue to pray and I know people are praying for me too.  Right now, it’s not any comfort.  So, it’s just another day in the life, of the average cancer patient.  So, I still exist, but I can’t say I’m living.

 

Treatment Fundraiser

 

Cancer Journey: Part 9

Published January 30, 2018 by lynn k scott

I know I’m a few days late posting the next installment of my cancer journey.  I almost laugh now because in one of my support groups, they posted this….   1517344294492.jpg

Now I covered up a word (use your imagination), but it’s still funny.  In fact, my response to this was, “I’m small enough to be a hobbit”.  So…onward with my journey…

I logged into Sutter Health’s system yesterday to pay for my labs and doctor visits.  In addition to chemo meds, these charges are always waiting to be paid.  I started exploring their system and found my visit summaries from my oncologist.

Whether it was lack of sleep, a chemical imbalance because of the medication, or the fact fighting cancer is mentally (in addition to physically) exhausting, I became an emotional wreck.  First, I was very angry at what was noted and then I cried all the way home from work.

I am more than aware these notations are not for communication with the patient.  However, if doctors are going to note conversations or their interactions with their patients, they need to stop the one-sided comments.

For example, one of the notations state that I “refused IV chemo”.  First, let’s use the appropriate words.  I was given information, made an informed choice about MY health and “declined” IV chemo.  It was my choice.  Using “refused” sounds like I was an obstinate child who didn’t do as her parents ordered.  They think “informed consent” is a punchline of a joke instead of a patient’s right.

Several observations use the word, “denied”.  Denied symptoms, denied having this or that, etc.  In my opinion, that’s another word that shouldn’t be used in this area.  I was asked a question and I answered that it didn’t happen or didn’t apply to me.  How about “negative” and “positive” when correlating responses to symptoms, side effects, etc.  Using the word “denied” implies the patient isn’t being truthful.

My doctor was nice enough to notate how I am generally unhappy with my treatment.  Yes, I can say that’s a fair statement.  What isn’t accurate is she neglected to mention how her nurse verbally attacked me for refusing the preferred IV chemo when I asked for another medication because I am having trouble paying $232.68. every three weeks.  Or I’m unhappy Sutter Health chooses to only provide cancer support groups for one area of the county, during the day and it’s not accessible to all patients.

Now, testing showed up in the notes.  I refused a few suggested tests.  Why?  One again, was over 20 miles away and would cost me a day of work.  They have an imaging center close to where I am, but refuse to offer all testing there.  I don’t think it’s out of the question to provide genetic testing in all locations; esp. when it’s just meeting with a doctor and taking a DNA swab.  Silly me for being practical (and cynical; at this point).  Oh, she also left off that I mentioned I couldn’t afford the $350 for another one of the tests she suggested.

I am fully convinced healhcare doesn’t exist.  There is no caring on behalf of these desensitized doctors and nurses.  A health system is in place to offer treatment; if you can afford it.  If you can’t, they don’t want to hear it.  They will give you referrals, but most don’t work out (make too much money, not enough grant money, not old enough, not the right cancer, etc.).

So, going forward, to protect my sanity, answers will only be “yes” or “no” or “fine”; unless some further explanation is needed.  This is not the first time my character has been accosted by those who are supposed to be helping me.  I neither can fight this notation battle, nor do I care to.

I read another cancer blog today where the writer received some negative feedback because she wasn’t upbeat enough.  That’s how I feel sharing this with my friends and church family.  I feel negative.  Yet, the reality is, this battle is far from easy.  The trials we have to go through aren’t perky, happy, or fun.  In reality, battling cancer SUCKS!  It’s horrible.  Doctors only care about treating the body; to hell with the mind or soul.  The purpose of my documenting this is to give a realistic guide to what I am having to deal with.  This is a real-life, first-hand accounting.  I know it’s hard for some people to deal with; but I’m not sorry for sharing what gets covered up with mainstream accounts.

It’s almost depressing to feel so alone, while trying to retain your dignity, sanity and carry on in your daily life and battling a life-threatening disease.  I take longer showers now so I can cry uninterrupted and it won’t be visible.  My 12-year old doesn’t need to see my worries, insecurities and breakdowns.  Being strong has never been harder.

I am eternally grateful to those who have been able to donate, which allows me to continue treatment.

Chemo & Medication Fundraiser

Angels Walk Among Us

Published January 5, 2018 by lynn k scott

I honestly believe that angels walk among us and they take the form of friends.

A few weeks ago, I was lost.  I was having daily meltdowns regarding how I am going to pay for my cancer treatment and medications.  I was shutting down and beginning to withdraw.

I had a long-time friend invite me over to her home after church.  I was such in a bad place, I didn’t want to go.  I told her I would think about it.  She tempted me with seeing their Siberian Husky.  I have unofficially adopted him…well adopted him in the sense he is my main focus when I get to visit him; and his owners.

I relented and asked when we should be at her house.  I grabbed a toy for Kona (the Siberian).  I love that dog; even if he’s not mine.  I get through church, take a much-needed nap (thanks to my meds) and woke up in time to leave.

Standard greetings took place and then it was time to see Kona; who is normally outside – he loves it outside.  I walk out, hear a guy’s voice, who I just assumed was my friend’s boyfriend.  When I say, I go to see the dog, I’m not kidding.  I was so dog-focused, I failed to realize my son was the one holding onto the dog’s leash.  Right next to him, was my daughter-in-law and granddaughter.          20171231_165213.jpg

It’s been six years since I’ve seen my son.   He’s in the Army, so visits are few and far between and he’s stationed across the country.  Another one of my friends used air miles that would expire before she could use them and flew them all out to see me.  I had yet to meet my daughter-in-law or meet my (now) eight-month old granddaughter.

To say tears were flowing would be an understatement.  I was beyond surprised.  Several people were in on it.  They kept me going til the surprise took place.  They knew how difficult life had become and brought a beacon of light to brighten up my world.

I have had the pleasure of having my oldest and youngest together for three weeks.  We did a few low-key tourist things, but mostly stayed near home.  I still have had to work while they have been here.

Walking through my front door and to be greeted by my smiling grandbaby brings joy like nothing else.  Cooking dinner every night has been great.  My daughter-in-law LOVES mashed potatoes!  It may seem trivial, but my husband is Asian and we eat a lot of rice.  I had another person in my corner for side dishes.  My son did good marrying her.  LOL

My granddaughter celebrated her first Christmas in my home.  My daughter and son were able to celebrate their birthdays together (New Year’s Eve and New Year’s Day).  I was able to bring the “kids” to church and introduce them to my church family.  My son isn’t big on attending church, but he did so for his mom.

I will be sad when I have to take them to the airport tomorrow.  Tonight will be the last night that I will sit on the sofa, holding the baby, and giving her a bottle.  She can hold it herself, but each evening, we’ve had our little bonding time.  I will miss it greatly!

I am blessed that I have angels walking among us and I get the privilege of calling them friends.

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Cancer Journey: Part 6

Published December 27, 2017 by lynn k scott

This is not the easiest post and it doesn’t have anything to do with the status of my diagnosis.

The last couple weeks have been tough.  I had to change my insurance plan, at work, and elected the “gold” versus the “silver” plan, in order to get rid of the annual deductible and bring down the usage fees when I see the doctor or get labs.  It also raised my weekly contribution costs, but it had to be done.

Unfortunately, with this plan change, came with a carrier change.  I joined the Sutter Health network and am sad to report they choose to charge patients a 20% copay for chemo medication, where other plans cover it 100% or charge a max of $50/prescription.  Hopefully, one day they realize how punitive this is and begin to cover oral chemotherapy pills as effectively as they do IV chemotherapy.

I left a plan where I was receiving negligent care and now I have a decent oncologist, but can’t afford an additional $300; every three weeks.  That includes the cost of the doctor visit, blood work and the expensive medication copays.  If I give up the ability to work (which eventually puts my job in jeopardy), submit to another surgery for a port, start IV medications, lose my independence, risk permanent side effects and not provide for my family, then the medication would be covered 100%.  Riddle me this…oral chemo is cheaper than IV treatment, but the insurance refuses to cover it 100.  Why?  Never mind; I digress.

After numerous breakdowns, I conceded I had to ask for help. I have had to resort to something I really hate doing.  I know fundraisers have helped many people and I have donated to those in need.  I was brought up that you work hard and support yourself.

I have followed the proper channels to ask for medication assistance.  It appears I was diagnosed at the wrong time of the year.  Nonprofit sources run out of money to help with prescriptions by the end of the year; that’s if they even acknowledge your disease.  Again, not all cancers are pink, but that’s where the funding is.

I have applied for part-time jobs.  I already work a full-time job, but need something to pay for my medication; even if it means working seven days a week.  I still am waiting for someone to hire me.  Problem is, I’m overqualified for the minimum wage jobs, even though I am willing to work weekends.

I have managed to get enough donations for another round of chemo.  However, I now have two weeks to raise enough money for the next round.  My pride is temporarily on a shelf and I have to post a link to my fundraiser.

If you are able to donate, even a $1.00, I would appreciate it.  If you are able to share either via blog or on your FaceBook page, that’s appreciated.  I plan on removing the fundraiser if I am hired or if some non-profit is available to help.

I apologize for having to post the link; but if I don’t raise the $300, in the next two weeks, my chemo treatment stops.  Please take a moment to read the fundraiser and if you don’t mind, share it where you can.

THANK YOU!

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