Chemo Counseling Today at the Pearson Cancer Center

Today was a day I was not looking forward to.  It was a visit to the cancer center for instruction on what to expect from the very strong chemo I will be on.  At the end of the conversation, I asked how long I had after the whole chemo regimen was finished.  She said maybe 6 months or more.  So, that meant if I didn't have chemo, it was usually calculated I had 6 months.  With chemo, I would add on another 6 months.  I really want to try hard to stick with it, but, after you read this next part, you will wonder how that will happen.  Ruthie again took notes and wrote them all up.   I so appreciate how she can do this.  Here is what she wrote:

"Do you know what the phrase "thick as thieves" is ? "As thick as thieves describes a relationship between people that is very close....The word “thick” as used in the idiom as thick as two thieves means intimate, familiar, closely allied, sharing confidences."  I can only imagine this is what Cynthia, Mom's chemo counselor thought of our crew as Mom, Dad, Aunt Margie, Kathy, Paul, and I all entered into  her small office with only 3 chairs in it.   WE are definitely  a close family and this  part of Mom's journey is certainly one we all are sharing with her.  Not because we have to, because that's what we are...........THICK AS THIEVES😉.

So, Cynthia was very thorough with Mom's appt today.  She, in detail, went through many side effects Mom could possibly have.  She had a nice folder for Mom with all of the notes and dates highlighted for her upcoming visits.  She did an excellent job, but I'll just highlight a few because Mom asked me to:-)

Mom will undergo 12 cycles of treatment which will last 6 months.  Every other Monday she will go to the Cancer Center for IV chemo and return on Wednesday to get her pump taken off.

Mom is up to date on her pneumonia vaccine.  She stayed today and received her flu vaccine.  This is important for all of us, but especially those who are or will become  immune  suppressed.  Cynthia making sure Mom has a supply of Phenergan and Zofran on hand that she can take for nausea.  During her chemo treatments she will be given Emend IV for nausea  that will be in her system for 4-5 days.  Hoping this will do the trick along with her crystallized ginger so that she won't need much of the anti nausea meds.. .. They cause the constipation.  I did ask if she should start taking the anti nausea meds before it starts, and she told us no.. Don’t  take it unless you need it.   If she does need it , she can even alternate them.  Mom asked about vomiting during the side effects of chemo.  She said she should not ever  vomit.  If vomiting happens, call immediately.  Dehydration can occur.

Mom asked Cynthia how she would know if the chemo was working.  She told her this was something to ask Dr. Paul , she thought scans would be taken 1/2 through the treatment cycle.  If I remember correctly from our appt with Dr. Paul she will order lab work that will show her the # for her marker tumor.  If it's gone down, I'm assuming it’s an indication it is working.  We can ask Dr. Paul again on Monday when and how often she will check this once chemo is started.

The day Mom gets her pump taken off she will be given a shot of Neulasta, a medicine given to build up your white blood cells.  Mom's WBC has to be greater than 1.0 to continue with the next treatment.  Neulasta can cause bone pain that can last up to 5 days after the shot, so they recommend taking Claritin for five days with it.

Vitamins and alkaline water are fine to take with chemo. The herbal things need to be approved by Dr. Paul.  At this point Mom's just drinking Essiac tea sometimes and rubbing the essential oils on her abdomen.

She spoke to Mom about oral hygiene and sensitivities.

Generally patients start to feel bad on the 3rd day after chemo is administered.  Eating small meals throughout the day will make her feel better.   The cold intolerance she will have is one of the worst side effects from this particular chemo (Aloxotin) that patients say they have.  Deep breaths of cold air can hurt her.... She needs to bundle up!  Wear gloves, a scarf, cover her face, socks and mainly just dress warm to help with the sensitivities.  Nothing to touch, eat or drink cold for at least 4-5 days after the chemo.  Then she can test it if she wants.  Even placing her hand in the refrigerator can hurt without gloves.  Reaching into the washing machine and touching wet clothes.

Folks that have had fever, cold, coughing etc.  should stay away from Mom during this time.  Mom is contaminated with bodily fluids for 5 days total once 1st chemo started.  She will need to flush 2x and wipe her toilet with clorox wipes.  Mom was concerned about kissing her babies . Gideon's a big cuddler and kisser.  Only cheek  kisses:-)!

Mom will need to cover her port to shower with a press n seal..... We will need to get some of those.  Her pump will be in a fanny pack.  But she only has to have this for 3 days each time.

On the day of infusion Mom will be there for 5-6 hours so she will want to pack some food and snacks.  They have a microwave.  She can't forget to bring her  enzymes:-)

Lastly she told Mom the more active she stays the BETTER she will feel and stay.   Don't stop living your life!!!!!   Ruthie Gillespie"

Beautiful Sunday

   We had 2 offers to drive us to church this morning, but the thought of sitting in a pew is not comfortable for me at this point.  I guess if I could get up and move around when I got uncomfortable would help but who wants to be a spectacle at church☺?

    I sure would like to see my friends at church though💕!  So many have sent cards though and I appreciate that too!

    Every day is a new day and will not be like the day before or the next day.   I am told to just take each day and not worry about what is coming up.  

    This morning I was tired and not very comfortable but Kathy came over and we took another walk around the block (1000 meters).  I go slow but I go!  👏  I am so tired when I get back but feel I have accomplished something for myself and that is what this life is all about right now.  Keeping healthy as much as possible.

    I am going for chemo counseling on Tuesday. I hope I can prepare my brain for this. I know all the side effects that this medicine can produce and I just hope and pray I can handle it. My daughters are all into juicing, natural remedies, etc. I haven't ever been quite like that but, hey, if it is natural veggies and fruits without pesticides, I guess there is no harm in helping myself keep healthy through it all. I want to keep healthy even though the chemo will destroy the good with the bad. Who wins is the winner:) Helping my immune system  keep the good is the challenge, although I doubt I am ready to go to extremes in this either...there are so many options out there but I must keep focussed on not getting obcessed with alternatives either.  

     God is still in the driver's seat as far as I am concerned.  He has the final say in my life span.  

      I do love the frankincense oil that I can apply to my abdomen. It's fragrance is healing at least if nothing else ☺☺☺  Quite expensive though! 

     Today is another day that the Lord has made for us to rejoice and be thankful.   Another beautiful fall day with blue sky and gorgeous leaves.  I have a wonderful family to surround me with so much

 care.  I appreciate them so much💓💓💓💓

The Day after Thanksgiving, 2016

I am going to write about yesterday (Thanksgiving Day) and how special it was for me.  Agustin and I were picked up by Ruthie to go to her home for early pictures.  One of my long time friends, Keith Thienemann, whom I have sung with over  many years, is a professional photographer.  He asked me if he could photograph me as a gift.  I was really never in a "photo shoot" before, but, he was so artistic and volunteered to photograph our whole family as they showed up for Thanksgiving dinner.  I will always be grateful for his generosity and care for this situation.
Dinner was wonderful.  Everyone made everything without my help...for years I would stuff and bake  the turkeys but this year, I was the "queen".  These days I cannot eat much at one time, so served myself carefully avoiding any fat or lots of sugar.  Sarah made so many delicious pies, but "MIMI" could not indulge.
After dinner, my niece presented me with a booklet of letters from all the family members who had written personal letters to me.  What  a treat that was as I began to read their thoughts and endearing comments about their relationship with me over the years.  I will treasure that for as long as I have.  Even the wee ones drew pictures for "MIMI".
As is common to my situation after I eat (I now take pancreatic enzyme capsules prescribed by the doctor) I tend to have abdominal pain and bloating but not quite as severe.  Wearing snug pants around my waist is not comfortable, so, our son Paul went to our house and picked up my nightgown and bathrobe and brought it back for me to change into:)  These kids really spoiled me and I was so much more comfortable "lounging" with them in my night clothes:):):)😄😄😄
I slept well last night, only waking up ONCE with no negative thoughts or "dark" thoughts of the future.  God keeps us going with all the prayers that are being prayed these days and I am so thankful!  I have to tell myself the truth that if I expect God to hold me in the "palm of His hand", I must let Him:)  Each day counts. 

1 Praise, my soul, the King of heaven;
to his feet your tribute bring.
Ransomed, healed, restored, forgiven,
evermore his praises sing.
Alleluia, alleluia!
Praise the everlasting King!

2 Praise him for his grace and favor
to his people in distress.
Praise him, still the same as ever,
slow to chide, and swift to bless.
Alleluia, alleluia!
Glorious in his faithfulness!

3 Fatherlike he tends and spares us;
well our feeble frame he knows.
In his hand he gently bears us,
rescues us from all our foes.
Alleluia, alleluia!
Widely yet his mercy flows!

Matthew 6:34The Voice (VOICE)

³⁴ So do not worry about tomorrow. Let tomorrow worry about itself. Living faithfully is a large enough task for today.

Thoughts early Thanksgiving Morning

I woke up last night at 2:30 AM, not feeling very well.   I could not go back to sleep.  I had a slight gnawing pain in my abdomen and I thought if I took a Tramadol it would help me go back to sleep, but it did not.  I laid there praying and thinking.   I was thinking about the upcoming chemo starting and all the side effects that are connected with it.  It is a strong chemo that is very toxic.  I thought, how can I go through this?   Why do I think I have to go through this at my age and with the kind of cancer I have?  It is inoperable and is not curable totally.   I do have some good quality  life right now with certain set-backs but generally good.  I can go swimming at the "Y", I can go out sometimes, generally, with pain meds, etc, do things I feel like doing.  I imagine that when I start chemo, I will not be able or feel like doing any of that?   Is that worth the time I will be saving by adding a few months more to my life but enduring chemo which will rob me of some good quality time?
This whole dilemma struck me before I knew what hit me about 4 weeks ago.  I had always said to myself, if I ever find myself in the position of incurable cancer, would I in fact go for the chemo or just go for hospice when it got to that point?
I told the oncologist last week to set me up for the chemo.  I am to get the port in next Friday and go for the chemo counseling next Tuesday.  Chemo would start Dec.5, Monday.   I am getting very insecure about this whole prospect. I feel embarrassed that I told her to go ahead and now I am having such torn feelings about it.
I am 75, feel younger than I am, but realize the statistics out there say I won't have more than about 6 months if I don't start chemo....but, hey, starting chemo may add only a few months or more and what kind of quality of life would I have going through all of that?
 In the synagogue service they sing a very sweet song by Debbie Friedman which keeps going through my head this morning called  Mi Shebeirach avoteinu:

Mi shebeirach avoteinu
M'kor hab'racha l'imoteinu
May the source of strength,
Who blessed the ones before us,
Help us find the courage to make our lives a blessing,
and let us say, Amen.

Mi shebeirach imoteinu
M'kor habrachah l'avoteinu

Bless those in need of healing with r'fuah sh'leimah,
The renewal of body, the renewal of spirit,
And let us say, Amen

The Next Stage

Today has been another day of learning about the next phase of this new journey in my life.   I got the phone call this morning from the cancer center scheduling me for 4 appointments in the next few weeks.   Next Tuesday I will go for chemo counseling and then Friday, I will go to Lynchburg General Hospital Outpatient  to have the port put in.  That takes several hours to make sure it is going to work properly.   I just saw a port for the first time the other day when a neighbor came over and showed me hers.  I had no idea it did not show on the outside of the skin but is hidden under the skin.  So, every time they apply the chemo they have to puncture the skin.  Interesting! 
On December 5, I will start the first round of chemo therapy with a drug called FOLFIRINOX.  It is a combination drug that is very toxic.  I will stay at the center for 3 1/2 hours that first time and go home with a pump that will be removed 2 days later until the next round about 12-15 days later as I understand it.   If I can tolerate this for 2 months, they will test to see if it is helping to shrink the tumor, then I will decide if I can keep it up:)     If it does not work, I will  go on the advice of my oncologist.
I am so grateful for all the support I receive every day from family and friends who keep in touch and encourage me even on little things.   For example, today the pedicure girl was supposed to come to the house and give me a pedicure.  I was not feeling well and I just didn't know if I should cancel.  But, with encouragement from my daughters and my sister I decided to take a pain pill and get up and do it anyway.  As soon as she came, it was a different story altogether.   We chatted, Ruthie came over, she was so gentle and encouraging.  She shared that her step mom was a nurse at the oncology center and that her Grandma was a friend of ours from our church.  Small world!  She was a great massager for my feet and legs and I was so blessed to have had her come.  It was a real boost:)
All the little ways daily that people and situations help encourage are so appreciated when life is getting "serious".  We must remember to praise the Lord and thank the Lord for all these little things that come up.

This afternoon Hailey brought the grandkids over for a visit.  I got to hold little MacGyver who is already 4 weeks old.      

 "How sweet to hold a newborn baby,

               and feel the pride and joy he gives,

               but greater still the calm assurance,

               this child can face uncertain days because He lives.

               Because He lives, I can face tomorrow,

               Because He lives, all fear is gone.

               Because I know He holds the future,

               And life is worth the living just because He lives." 

Gaither

Adenocarcinoma

Well, here is the latest on my cancer.   It is all they said it was, just confirmed that it is in fact, adenocarcinoma, after the biopsy.  I was not told what "stage".  I do not understand what "marker" means but it is 4,700 when it only should be 12 (?)...something like that.
Next week a port will be inserted and I will receive instruction on chemo which I guess will soon follow.  Merry Christmas 🎄
I was undecided for so long as what I should do as far as chemo, hospice or going up to Johns Hopkins for a trial (which I was told by my the doctor here that I was probably a good candidate for).
I may be a "good candidate" but my support group is here and that is very important to me.  Really, God is in charge of the whole thing anyway.
I asked the doctor what my life span would be with the chemo and she said a year.  Without  it would be "less"....she didn't commit on that one though:)  So, God is still in charge.
As I look at this whole surreal thing, I realize that I  want good quality of life what I have left.  And, I  am not ready to give up yet either.    When I feel too much pain and fatigue, that makes me feel like giving up.  As soon as I get energy back without pain, then I have hope again.  I am just learning how to live with this.  How long and how, are the big questions.
I am looking forward to Thanksgiving Day with my family.  We will also have a family picture taken at that time by a professional photographer who has offered to do this.  I am deeply indebted to him.
Tomorrow I am having a pedicure, right here in my own house.
Life is short at 75.   Yesterday we celebrated the birthday of one of our friends from church....she is 100 years old.
Nothing profound at this writing.  Thanks for listening 💓 

Endoscopy

Yesterday we traveled to Charlottesville, VA, for another test.  This time it was a needle biopsy down my throat (endoscopy).   The tumor is 4X4 cms. and the pancreatic duct is blocked. They want me to take pancreatic enzymes.  The doctor in Charlottesville will send everything to Dr Paul probably on Monday. Definitive cytology will help my doctor, Dr Paul,  help me to make  decisions. I need to eat small amounts frequently to keep my weight up.  (Wow, that is a first:):):)  I can swim and rest as needed.  Oh, and from where she was she didn't see any liver lesions.  Another new learning experience for me.   Who would have thought in my 75th year, I would be having all these new experiences?
New experiences also come with new visions and new decisions.  So, I happen  to have an inoperable tumor in my pancreas near the duct...my only options are to apply for a trial at Johns Hopkins or elsewhere, chemo here in Lynchburg or hospice here in Lynchburg.
Since I have had some really good days within these last few weeks, am fairly healthy in my "old" age, have had some real soul searching and good discussions with doctors and nurses in the field, I am learning not to give up too fast as I once thought I would.
I am also thinking that I will not go elsewhere for opinions or therapy or trials. The doctors in Charlottesville have not said anything differently than my oncologist here.   My daughters have pointed out that God will give me the PEACE I need and that is how I will know it is the right thing for me to do.  Confusing myself with lots of options that tire me to even think about, is not my goal at this point in my life.
So, as of this writing, I am leaning toward the option Ruthie wrote about with the portacath in place and the chemo therapy to maybe retard my cancer and make a little more of life worth living, even though I realize that I won't live to be 90 or 100:)
I love my family and I love my Lord.  The day before yesterday was a very special time for me.  Ruthie and Kathy gathered friends at the Third Wave Coffee shop on 221 for a prayer meeting especially for me.  I was deeply touched.   I feel there is HOPE these days for lengthened days and I pray for the energy and the strength to get through the chemo with results that will lengthen my life and even include more quality of life a little longer.

Psalm 121  

I look up to the mountains.

    Where does my help come from?
² My help comes from the Lord.
    He is the Maker of heaven and earth.

³ He won’t let your foot slip.
    He who watches over you won’t get tired.
⁴ In fact, he who watches over Israel
    won’t get tired or go to sleep.

⁵ The Lord watches over you.
    The Lord is like a shade tree at your right hand.
⁶ The sun won’t harm you during the day.
    The moon won’t harm you during the night.

⁷ The Lord will keep you from every kind of harm.
    He will watch over your life.
⁸ The Lord will watch over your life no matter where you go,
    both now and forever.

Today's Oncologist Visit

Today is November 14, 2016

Ruthie wrote the following summary of our visit today. What a wonderful caring doctor Dr. Paul is.  I was able to frankly talk to her and have her answer my questions.   I am enclosing what Ruthie summarized for our family. Ruthie is a patient of Dr. Paul because Ruthie has CML..chronic myelogenous leukemia.

"I am typing a summary of my notes from today, otherwise, I may forget them:-)  Mom, Dad, & I went to see Dr. Kathleen Paul for Mom's first medical oncology appointment.  It was a very lengthy appointment that was filled with a lot of talking and questions from the doctor.

First, Mom was taken in for lab work.   We then were taken in the examining room to meet with Dr. Paul.  She was thrilled to know that she and Mom shared the same love for classical music.  They talked for quite a few minutes about their music.  Dr. Paul plays the harp:-)  Interestingly enough, I've known her for almost 2 years and never knew this about her:-) It was fun to see them talk together!!!

Next, Dr. Paul asked Mom all about her medical history....family history as well....She asked her to describe to her in detail how all this started.  How she came about finally realizing there was a problem and seeking medical help.

They discussed Mom's appetite and weight loss.  They discussed which foods were most likely going to be better for her to digest...example,  low fat & low protein. She was content in finding out that Mom was taking the over-the-counter enzymes which are from the Health Nut Store.  However, she felt it would be good for Mom to try a prescription strength enzyme supplement..Neither of us knew they had that.  Mom will try the sample bottle Dr. Paul gave to her.  She will see if these RX enzymes work better.  If they do, she should take them.  Mom will shop around for less expensive ones.  She is seeing her dietician this Wednesday at the Cancer Center to discuss her diet . This was a very important discussion for Mom & Dad.  In my opinion, she expressed to Mom that it's going to be trial and error for Mom.  Eat and then figure out which foods are easy to digest and don't give her discomfort.   Better to eat lean meats, easy starches..... bland diet. 

Dr. Paul seemed very pleased that Mom isn't having fever,jaundice, nausea, or diarrhea.   This is positive!  She encouraged her to take a full tablet of her Rx pain medicine Tramadol since she is tolerating her 1/2 tablet fine.  No need for suffering pain:-)

Next was the biopsy discussion.  Mom is scheduled Thursday to have this done @ UVA.  This biopsy of the pancreas will be useful.  It will tell what type of cancer it is, is it slow or fast growing,and  treatment options etc....

Then Dr. Paul discussed Mom's 4 Treatment Options as if she has the adenocarcinoma.

Please note, these are notes I jotted down to the best of my knowledge and understanding.  Mom and Dad may have more to add or take away....haha! I really wanted to record the visit, but didn't have time to get my sister's  tape-recorder so this will do.

1. CLINICAL TRIAL:    Johns Hopkins in Baltimore:  She said they are always revolving with new and different treatments for pancreatic cancer.  She has no idea what this looks like.  It could be chemo IV, it could be chemo Pills.  It's 100% dependent on the trial.  Mom would get a much better opinion in person.  Lines of treatment are based on 1st, 2nd,& 3rd lines of treatment.  Should Mom not choose to move forward with a clinical trial first, once she starts Chemo here, she would not be eligible for 1st line of treatment.  I think Dr. Paul used the term "judgemental" meaning at a clinical trial they want a "virgin" , an untouched patient.

2.  Standard Chemo FOLFIRINOX:    Here in Lynchburg, Mom would have a port inserted for treatment before it started.  An example of how this would look:  Come in on a Monday and have 6 hrs of treatment done in the cancer center.  She would go home with a pump in her port and return  back on Wed.  She would not have treatment for 12 days.  This is INTENSE. This chemo has the best track record of extended life.  There are increased side effects. (neuropathy, loss of taste, some hair loss, nausea, diarrhea, constipation, infection). She would not be able to touch, eat or drink anything cold for 48 hrs or would  feel a shock.  They would give her a WBC (white blood count) boost.  Dr. Paul usually cuts this chemo dose in the beginning so that it's more gentle and most patients do ok with it.

3. GEMAR/ABRAXANE:  This is a step down from the previous and more gentle but she still adjusts the dosing.  It's given 1x for 3 weeks in a row.

4. GEMZAR alone:   Gentler and not as effective in treating the cancer\ -  you don't lose your hair.

The last option is NO TREATMENT- Here Dr. Paul and Mom discussed some hard topics. Hospice of course.  Hospice is wonderful she said. Here are some answers to Mom's questions for her:  Not everyone has pain when they are dying.  They make sure patients are kept as comfortable as possible. When pancreatic cancer patients die , they die from their liver shutting down.  They are yellow and jaundiced. Their appetite goes down because their liver isn't processing.  You become sleepier and sleepier and you pass away in your sleep.  Not from pain.  Does it take long to die? It depends.  Dr. Paul said that this option is just as important as her other options.

The goal in Chemo is to accomplish a response to hold stable or shrink the tumor.  Mom had blood work today that was excellent. She is testing Mom for her tumor marker and will find those out, not sure when.  I'll call her in a few days.  This is helpful with chemo treatments, because sometimes instead of having to have the MRI's done etc., to see if the cancer it shrinking, they can tell by these markers (?) .I think this is what I understood.

I asked her what her prognosis thoughts were without treatment....she asked Mom if she wanted to know this answer.." Mom said of course.... She said around a year.  We also spoke of antidepressants.  She asked Mom if she thought she needed them.  Mom told her much of her emotions is based on her pain.  I don't think right now Mom thinks its necessary.

Dr. Paul was everything I had hoped and prayed she would be for my parents today.   She was thorough, professional, yet down to earth.  When Mom was emotional she came close to her and held her hand.  She is compassionate and spent a lot of time with her.  I couldn't have asked for a better appointment except for her to say she can cure Momma:-)  But she can't, only the Lord can.   I ask that you continue to lift my Mom up in all hthe decisions she has to make.   I'm praying for Peace for her .  I also am praying that Mom will make her decisions NOT based on money or time and not base them on the burden she feels treatment would entail.   She knows if she chooses to do any treatment she will have support and caregivers!!!! Let's cheer her on regardless what she chooses.

Dr. Paul did tell Mom she looks amazing!  She looks healthy to look at her. Even in her physical examination of Mom she couldn't feel anything.  Her swimming and singing have kept her healthy. She said as long as Mom feels like it,she should continue in her normal pre diagnosis activities. She also said Mom's medicare and insurance would and should cover all treatments including the clinical trial.

I hope this has summed it up.

Love,

Ruthie"