Feeling Vulnerable but brave

                     

Before

                                             

                                                                                    After

I had hoped this day would never come but no such luck! Over this past weekend, my hair began to fall out, slowly at first and then by Sunday morning it was driving me crazy.  The only solution was shave it all off.  I always considered my hair my best feature.  As you can guess making the decision to go bald was traumatic. I cried and cried some more. Good news was my son has experience with clippers.  He keeps his own hair short, so he knew how to do it.  The other good news was I had ordered a wig, anticipating the inevitable. You can see the wig below at the end of this blog.

So why am I posting this and putting myself out there.  When I started this blog, my main reason was maybe I could help someone else going through this journey.  The other reason was because my Son-in-law fights this battle every day.  It's his line of work, Cancer research.  I can't even tell you how invaluable it is to have him in my corner.  He goes to all my doctor appointments with me and my daughter, Tracy.  Doing a blog was his suggestion.  Tracy also goes with me to all my chemo treatments every Monday.  This isn't the normal procedure, but I have a hearing disability. We obtained special permission for her to be with me during treatment.  The infusion nurses are mostly ok with this arrangement. There have been one or two who give her a hard time about being "in the way" but she's a warrior and usually puts them in their place pretty quick. This is vitally important; you have to stick up for yourself especially if something doesn't feel right at any time. 

Let's get back to the hair subject.  My advice is "be prepared ahead of time".  There's a very good company called Paula Young Wigs.  Their wigs are good quality and affordable.  There are hundreds of choices and colors to choose from.  It took about a week and a half to receive my order.  The total cost of the one I chose was just over $60.00.  

RWJ/Barnabus also has a program called "Liz Inspiration Boutique" their number is 732-232-3110.  The first day in the infusion center, I was visited by Jane the Nurse Navigator.  She gave me this information.  The only drawback is, you have to wait until your hair is gone before you can get measured for a wig from them.  Apparently, the cost is covered by Medicare.  But don't quote me on that because I haven't called them yet to find out what it's all about.

I've now had six chemo treatments and for the most part, I feel really good.  Some of the things I've noticed, some foods taste different and not as good as before.  I don't get nauseous, but I do get heart burn.  Omeprazole or Tums usually helps. I also have noticed that the day of chemo, I have a lot of energy that evening.  That's due to the pre-meds I'm given to keep the nasty side effects from happening.  One of them is a steroid. After it wears off, I find I get tired more.  Luckily, I sleep very well.  I guess that's enough information for now so here is the much-anticipated last photo of beautiful me:

                     

                     Wig

💞

Week 4

 

I know I'm late posting this week.  Thankfully, it's because it was a pretty good week.  I didn't have very many side effects from the treatment.  Just some minor stomach rumblings.  I did experience some fatigue on Friday, but I think I did too much.  Since I don't have much to report this week, I'm thinking maybe I will only post once a month.  Unless, of course, I have something to report.  As long as things keep going smoothly, I can't complain.  I still have all my hair as well, yeah! 😁

I'll post again in a few weeks or sooner if anything changes.  Thank you for following my journey, I hope it's helping someone traveling this journey with me.  💘

Week three

Monday 9:30 arrived at infusion center for third chemo treatment.  Things got off to a slow start because I had to have blood drawn before treatment.  I sat around in the not so comfy recliner for two hours before treatment actually started.  Once the first bag was hung on the IV pole it took 30 minutes to run.  There's a little down time in-between each bag.  Last bag also took 30 minutes to run.  Then it takes a few minutes to disconnect from the IV.  I was free to go home. 

My Son Don picked me up and we were home by 1:30.  Somewhere around 3:00 I was hit with excruciating stomach pain.  I won't go into detail but let's just say once a trip to the rest room was over, I felt better.  I tried to drink lots of water and I had a little bit of soup at dinner.  I was feeling pretty good except for being tired.  I went to bed around 10:00.  I woke up off and on thru the night feeling mildly nauseous.  By 4:00 am I was throwing up.  My mistake was not taking the anti-nausea pill.  My excuse was, I was too sick to walk to the kitchen to get it.  I know, dumb reason.  Going forward each week I now know to not wait but take the medicine before it's an issue.  

Tuesday, the day after chemo.  I was so wiped out all day, all I wanted to do was sleep.  I was sick again in the afternoon after eating some leftover soup.  Finally, after the last bout I started to feel better.  I kept thinking to myself, I have to eat something, but what?  I asked google what foods settle an upset stomach.  I made some white rice that I boiled in chicken broth and ate that.  Then I ate a cup of applesauce and a few ginger snaps.  I also drank a cup of mint tea.  All things google recommended.  Good old google to the rescue!   

So, some lessons learned; take the anti-nausea pill before you feel bad.  Could I have eliminated the stomach upset?  I guess I'll know next week. Drink as much water as you can, it helps to flush out the chemo drugs.  I still have all my hair, I'm not sure when that will start falling out.  I have to tell you also, the nurses that work in the infusion center are angels sent from above.  They work so hard and have many patients to care for.  They are constantly moving and doing something for each patient.  They are always asking if you need anything, a warm blanket (there's a blanket warmer in the center) something to drink or a snack.  I only wish they had bottled water but all they offer is juice or ginger ale.  Did I tell you they offer sandwiches too?  Each day at 11:00 am they come around with sandwiches and drinks.  The sandwiches are always fresh and really good.

To sum up my third treatment, it could have gone better.  Most of the reason for that was because of me and my choices.  Now I know better.  As I take this journey I'll be learning things as I go and hopefully I'm also helping others who may be taking the journey along with me.  It's hard to open yourself up for all the world to see but if it helps someone else it's worth the embarrassment.  Till next week 💘

My fight against the big C

It's been a year since I've posted anything here.  I guess I didn't have anything to say.  Well all that has changed for me.  I'm fighting for a longer life right now.  Yes, the big C, Cancer has caught up with me.   

My story starts back in 2021 during our year of lock down due to Covid.  I went to my primary Doctor for a normal check up as I do every 3 months.  I'm type two diabetic, therefore my blood work gets checked on that schedule.  While there I told my Physician's Assistant I was concerned by some vaginal bleeding,  a concern when you're post-menopausal.  She suggested I make an appointment with a genecologist.  From this point I'm going to outline the time frame for you:

February 2021 - Saw a genecologist.

March 2021 -  had an ultrasound

April 2021 - I went back to genecologist for results and consultation.  Her recommendation was to have a biopsy.  I was told I would get a call to set up an appointment at the hospital.    

This is where things went wrong, I never got a call from anyone.  Also at this time (May 2021) I found out that my son Bob was diagnosed with cancer.  The next months were some of the worst of my life.  He passed away in September and I was devastated.   As you might imagine, I wasn't thinking about me and my health.  In other words, I blew it off.  I had plenty of excuses, must be covid related reason for hospital not calling was the one I used the most.

Jump forward to 2022 -  Another appointment with my primary.  He asked me about my original concerns regarding my  gynecological problems.  I told him I never got a call from anyone and I wasn't too thrilled with the Doctor I saw anyway.  He recommended another Doctor and urged me to make an appointment.  I did because now my discomfort has increased to add pain to the mix.

April 2023 -  First appointment with Dr. Sutherland.  His recommendation was a biopsy.  I agreed to have it done at Community.

June 28, 2023 -  Checked into Same day surgery and had the biopsy done.   

July 5, 2023 -  appointment with Dr. Sutherland for results.  Biopsy is positive for Cancer.  Referred me to Dr. Hackett for further treatment.

July 13, 2023 -  First appointment with Surgeon, Dr. Hackett.  He recommended complete hysterectomy.  

July 26, 2023-  Went to Community for pre op testing. 

August 8, 2023 - Checked into Hospital for surgery.  Things didn't go as planned.  My surgery was more complicated,  Dr. Hackett couldn't do the laparoscopic/robotic procedure.  My hystorectomy was done the old fashioded way.  My stay in the hospital was 4 days.  

August 16, 2023 -  Follow up appointment with Dr. Hackett.  My prognosis was not good.  My cancer has spread outside the uterus.  Dr. Hackett referred me to and Oncologist, Dr. Tang.  

 August 24, 2023 - First appointment with Dr. Tang.  I liked him right away because he didn't hold back on the reality of what I'm up against.  There's no cure but my condition is treatable to extend what time I have left.

  Sept. 8, 2023 -  Appt. at Community Outpatient dept. to have port implanted.  This is for easier administration of Chemo drugs.  The actual procedure took about an hour.  It was uncomfortable but I was mildly sedated and alert.

Sept. 11, 2023 -  Back to Community Outpatient dept. for a CT Scan.  This was to establish a base line for future scans.  Hopefully future scans will show improvement after receiving chemo.

Sept. 18, 2023 - First day of Chemo treatment.  Reported to Infusion Center at 8:00.  The center is very well run and everything was going smoothly.  Around 1:00 pm I had an allergic reaction to one of the drugs.  The staff were incredible and reacted immediately.  Treatment was cancelled and I was transported to the ER.  I was checked out there and it was determined it was indeed a reaction to the drug.

Sept. 25, 2023 -  Reported to Infusion Center to start again.  Everything went well this time.  A replacement was ordered  and I received my full chemo treatment.  I will be going every Monday for how ever long it takes to receive treatment.

This brings me up to date on my timeline.  So far I haven't had any side effects from my first chemo treatment.  Keeping my figures crossed to keep it that way.

I know this has been long, but hopefully even if it helps only one person going through something like me, it will be worth it.  

If I can give one good piece of advice it's this, Don't be afraid to seek treatment for anything abnormal with your health.  Your life could depend on it.

I will try my best to update my blog at least once a week.

Recession or Depression?

                                                                                    

This morning I was paying bills, as I do every month when my Social Security deposit arrives in the bank.  In the past few months several bills have gone up.  Today I was surprised once again by an unexpected increase in my Natural Gas bill.  I got an increase of $29.00.  Add this to the $30.00 increase to my phone bill, the increase to my out-of-pocket cost for medication, you can see where this is going.  The cost of living increase I received in January is wiped out and then some.  I got to thinking about how I can reduce my grocery costs.  Groceries are the only place I can lower spending since rent and utilities are non-negotiable.  That in turn brought my thoughts to my parents and how they survived during the great depression of 1929.  That brought me to another question, what is the difference between a depression and a recession?  I asked Siri and this is what she told me:

So, in my opinion in my own personal experience, we are in a depression.  When I have to make choices between buying food or paying bills, I think there's something rotten in this country.  Set aside your politics for a minute and just answer this question, are you better off or worse off than you were two years ago?  I know what my answer is.  Where do I go from here, I've already cut out just about everything to save money.  I don't go out to restaurants, or movies and I haven't had a hair cut in almost a year.  I shop mostly at Aldi now for groceries and I never go shopping for anything new like clothes or household items.  Maybe technically we aren't in a depression or recession yet, but I am certainly depressed about my quality of life.  The Golden Years, that's a joke.  

A Celebration of Life

 

Yesterday we had a Celebration of Life gathering to remember my son, Bob.  It was exactly the kind of gathering he would have loved.  The venue was my daughter and Son-in-laws Farm.  The weather was almost perfect but could have been a little warmer.  Everything was set up outdoors as a precaution against Covid.  

I have to give a huge thank you to our friend Dee Dee.  She went above and beyond to prepare most of the food.  Thank you Denis for grilling the sausage.  Thank you Dan for making some killer wings.  Thank you to my grand daughter, Jessica for making the awesome salad.  I would be remiss to not mention all the desserts that everyone brought, too numerous to mention by names.  If I left anyone out I'm sorry, just know I thank you so much.

The roses you see above were given to me by my friend Deb.  I met her through Tracy and Denis and she is like family to us.  Our family is truly blessed to have people in our lives that have shown again and again that we are loved.

There were so many of those caring friends that came yesterday to honor Bob.  Some of his friends from childhood that I hadn't seen in years.  Some of Bob's newer friends that I had never met also came.  Kurt and his wife brought a remembrance for all the ladies to take home (see mine here):

Each pot of flowers was a little different and each contained a packet of flower seeds (forget me nots) to plant next year.  The flowers are all real and very cleverly kept fresh.  She put a lot of effort into making these beautiful remembrances and I can't thank her enough for doing it.

We are a large family and therefore there were a lot of extended family.  Nieces, Nephews, cousins, in-laws, grandchildren and even great grandchildren.  I can't name you all but I am so very grateful to you for coming.

The day was spent sharing good food, and sharing memories and pictures.  The only down side came when it started getting really cold.  People started to head for home when suddenly a storm descended on us from out of nowhere.  All of a sudden the wind kicked up and rain poured down on us.  We all started grabbing the food and running for the house.  I mean it was so strange, we had no warning.  And just as fast as it came, it left.  Could it have been some mischievous spirit who thought it would be funny to see us all getting soaked, I wonder!! 👻👻👻 

In closing I'd like to share the poem we chose for the prayer cards:

My heart is broken

 

This is my son Robert H. Reed

He was called home to be with God yesterday

His pain and suffering are over.  His passing caught us all off guard because his cancer was stage two and he was responding to treatment.  God had other plans for him it seems.  Bob left behind his wife Donna and their daughter Ashley.  He would have been 55 in November.  Please pray for those of us who loved him..