#17 SIDE EFFECTS HAVE BEGUN

MONDAY, MAY 2 - AM BP 129/56, PM BP 128/58 with symptoms, 2 radiation treatments

TUESDAY, MAY 3 - I woke up depressed from 2 things - struggling with being a complete quitter of cigarettes and worried that I wouldn't get to go to trail days because on Monday the radiation therapists told me Dr Sood plans on a radiation booster following the 30 treatments. 

After radiation a cat scan was done to check the progress. Good news - Although Dr Sood said it doesn't tell the whole story but the tumor is almost gone. After the radiation treatments I saw Dr Sood.  I saw him in the hallway and reached out for a hug which he returned big. He told me later that he could tell something was wrong. He said I didn't look my cheerful, happy, strong self. We talked about my depression and my struggle with the cigarettes. He was a great help. AND he said I can start the boost when I come back from Trail Days. http://www.traildays.us/

WEDNESDAY, MAY 4 - I went for my visit with Dr Veytsman and blood tests between radiation treatments. BP was 112/58 because I forgot and took a whole pill at 7 am. Received a call from Amy the nurse navigator and she said my white cell count is really low and reinforced the instructions given to me earlier. Basically, I have to be really careful because now my body can't fight infection.

Following the visit I went to the second floor to get my chemo schedule and met Candace, the scheduler.  Here is an updated schedule including doctor visits, radiation, and chemo:

WEDNESDAY EVENING SAD NEWS - I learned that a trail family member passed away. A toast to an absent friend. Big hug to all as we mourn Baltimore Jack's passing. May we find comfort that we had the pleasure of knowing him and joy and laughter in the memories. 

So many wonderful memories going through my head. 

FRIDAY, MAY 6 - Side effects started this week including extreme acid reflux and fatigue. Some days all I was able to do was make appointments, eat and sleep. I saw David C. Weksberg on Friday after my first radiation of the day.

After reviewing my chart and seeing my blood test results he gave me off for the second radiation on Friday hopefully giving my body more time to rebuild white blood cells. He also prescribed Omeprazole and Magic Swizzel for the acid reflux side effect. And ordered blood tests for Monday before radiation.
I also saw Dr Bibosa on Friday for a blood pressure check. He changed my blood pressure medicine to a less strong medication.

Day 13 of 15 of radiation complete.

UPDATE ON CIGARETTES - Thursday, Friday and Saturday no cigarettes. 4 on Sunday.

# 16 NICOTINE IS A BITCH

SMOKING ABOUT 4 CIGS A DAY DAMN IT

 

TIME TO GET RID OF THESE  TEMPTATIONS

THE LAST ASH TRAY IN THE APARTMENT

THE CIGARETTE ROLLING MACHINE

# 15 WEEK OF APRIL 25 NOTES - BRAIN MRI NEGATIVE!

MONDAY APRIL 25 THROUGH FRIDAY APRIL 29

MONDAY CHECKUP WITH DR VEYTSMAN - Met Kathleen Spadaro, Nurse Practitioner. She updated my chart for new system. Blood Pressure 118/60 Pulse 60. GREAT NEWS FROM DR VEYTSMAN - MRI OF BRAIN NEGATIVE! Nurse Melissa Mummert drew blood to check white count and electrolytes. Received call from her later that day saying my magnesium was low and to add 2 - 400 mg per day to my supplements. Magnesium is a trace metal needed in the diet that plays an essential role in energy use in the cell and in copying the cell’s genetic material.  I also researched magnesium rich foods.

I added a folder to my documents with lists and charts on nutrition.

http://www.bodybuilding.com/fun/ultimate-list-40-high-protein-foods.html By Matthew Kadey, MS, RD

 
 

 Will see Dr Veytsman and have blood tests once a week till next chemo treatment in May.

THIS WEEK WITH DR SOOD - On Monday Dietician Margaret said I should be eating 5 servings of protein a day. I researched protein rich foods.

BIG THANK YOU TO MY NEW FRIEND MEG BRANTNER who followed me to the garage to leave my van for inspection, took me to both radiation appointments and then to get my van. It was a good day - only thing van needed was a light bulb! It was great getting to know Meg better. We had a good time and she showed me the alternate route to get to radiation appointments next week when 11-15 will be closed.

 

On Tuesday Nurse Julie and Dr Sood said my face color has improved greatly and gave me big congrats on quitting (almost!) smoking. Julie said 4-6 puffs a day is nothing especially compared to what I used to smoke a day. But I am not giving up on becoming a complete non-smoker.

 

On Tuesday Dr Sood said I need to build up my protein to prepare for throat and swallowing issues which may start in a week or two.

 

On Wednesday my nails are getting brittle and soft. Nurse Julie said on Thursday that this is from the chemo. I purchased Biotin (B7) supplements.

"There are many supplements marketed for strengthening nails, but the only significant evidence to-date is for supplementing with biotin (vitamin B-7)."

http://www.consumerlab.com/answers/Can+vitamin+supplements+strengthen+brittle+nails%3F/brittle_nail_supplements/ 

On Wednesday, the radiation therapists gave me a box of donuts and container of cookies to give to hikers. I put them on Doyle Hotel balcony picnic table with a note before doing a shuttle at 6:30 am. I'm sure the hikers in town loved that trail magic! There was at least 6 hikers in town.

On Thursday at the end of the second radiation I was feeling lightheaded and asked the therapists about it. Their first reaction was that it is normal when rising from the table but after I had to sit back down 4 times Kathryn took me to a room to check my vitals. Nurse Julie came in the room and said my blood pressure was low. It was 105/60. About 10 minutes later it rose to 112/57, still much lower than previous BP's this month. 4/8/16 - 137/56; 4/22/16 - 128/56; and 4/26/16 - 126/63. She said there is a name for what is happening. It is called orthostatic hypotension. She said when getting out of bed (other times it is happening) to roll on my side, then sit up in bed before standing >> "Sit before you stand, stand before you walk, look straight ahead and TAKE IT SLOW!" And taking a few deep breaths at each step.  She also instructed me to call Dr Bibosa who prescribed my blood pressure medicine. 

Dr  Bibosa's instructions are to take 1/2 pill a day and I will go in next Friday for a blood pressure check with his nurse.

Friday is day 8 (radiation # 15 & 16) of 15 days of radiation! Half way there! I saw the nurse again and we talked about my blood pressure. Today at 8:20 am before taking a blood pressure pill it was 128/56. She said do not do any changes in my blood pressure medication on my own. It could cause serious damage to go off pills totally suddenly. I told her I take my blood pressure pill after my first radiation of day. She said yesterday's low bp was probably because medication was at it's peak at that time.  
Seen by Dr Prashant Desai

today because Dr Sood has a day off. He said my lungs sounded good and asked how I am doing with smoking. Not as good as I hoped -  4 - 1/2 cigs a day. He said I have to get off them completely.

ENJOY THE MUCH NEEDED LIQUID SUNSHINE, EVERYONE!

# 14 WHAT A WONDERFUL WAY TO VOLUNTEER!

Here's some I have met so far. 

This gentleman didn't just tell me where I needed to be when I was confused on the first day concerning which floor I needed, he escorted me on the elevator and to the door of the room I needed to be in! 

  Barbara, retired elementary teacher Susquenita School District was the first volunteer to greet me on my first visit to the infusion center. She came out to the lobby where I was waiting to be called! THANK YOU BARBARA!

Volunteer and her dog Lola! She dresses the dog for all the holidays!

# 13 LOVE THESE PEOPLE!

BIG, BIG THANKS AND LOVE  TO THIS TEAM

 AT THE ORTENZIO CANCER CENTER

 RADIOLOGY DEPARTMENT

 UNDER THE FINE DIRECTION OF CARING,  LOVING, AND INSPIRATIONAL DR SOOD.

This is the second time I have been under their care. Wish I wasn't seeing them again for this reason but overjoyed to have them as the team to care for me. 

 

AT WORK

# 12 OKAY, LET'S GET 'ER DONE!

RADIATION FIRST AT WEST SHORE FACILITY, THEN CHEMO AT EAST SHORE FACILITY THEN RADIATION AGAIN AT WEST SHORE FACILITY!

THE RADIATION ROOM

And here's me on the radiation table! Appointment only takes 20 minutes from the time I walk in door to walk back out!

BIG THANK YOU TO MY DAUGHTER TINA WHO DID ALL THE DRIVING FOR ME ON WED THROUGH FRI., APRIL 20 TO 22.  LOVE YOU TO THE MOON AND BACK.

  RECEIVED GUIDELINES OF SIDE EFFECTS AND WHEN TO CALL DOCTOR OR NURSE

CHEMOTHERAPY RECEIVED - CYCLE 1

Day 1  - Anti-nausea and steroid infused with saline then cancer drugs Carboplatin and Etopozide.

Day 2 - Saline flush to rid body of carboplatin so it doesn't lay in kidneys, Etoposide

Day 3 - Same as Day 2

ORAL MEDICATIONS SCHEDULE

Day 2, 3, 4, 5 am and pm Dexamethazone (steroid for all side effects) and Ondansentron (anti nausea)

Day 6 am and pm Ondansentron

OUCH !

Day 1 Needle going into my port brought tears to my eyes because of the pain but my nurse assured me it would hurt less each time.

Day 1 Arrived at 9:10 am. Infusion started at 10:20 am. Flush started at 1:44 pm and ended at 2:00 pm.

BIG THANK YOU TO MY NURSE MEGAN ON APRIL 20! She was very kind and caring and explained everything very well.

Day 2 - 4/21/16 My nurse on day 2 was Rita and the volunteer was Manoja. At 9:27 Rita infused the prehydration to clear out day 1 treatment. Rita elevated my legs because she noticed swelling. At 10:20 the etoposide was infused and at 11:30 am I was done. No pain today from the needle.

Day 3 - 4//22/16 My nurse was Jodi and the Volunteers were Barbara & Tom. I arrived at 9:15 and was done at 11:09 am.

 WEIGHT GAIN
Gained 5 lbs since first weigh in. Nurse assures me it is all the fluids and I should piss it out over the weekend.
CARE OF PORT
Always remove bandaids within an hour to prevent infection. Don't need to specially cover to kayak. Pat dry if port gets wet. Do not submerge port.
CONSTIPATION (my only side effect thus far)
is a side effect of the ondansentron and should be relieved by taking stool softeners, lots of water, prunes, fruit and vegetables. Start remedy as soon as start taking medications.

# 11 - BIG SHOUT OUT THANKS & LOVE TO A TRAIL FRIEND

On Wednesday April 20, when I came home from treatments there were two boxes on my balcony - one being my Doterra Essentail Oil order (which I totally forgot to change from previous month - shucks)!

https://www.mydoterra.com/trailangelmary/#/

AND a box from Amazon. I didn't remember ordering anything from Amazon! 

Then on Thursday while I was on computer at treatment center I saw message from my wonderful, kind trail friend Phoenix Rising from Arizona. 

She sent me a brand new humidifier which the doctor recommended to help heal my lungs as I quit smoking. 

She also sent me these great inspirations through facebook to encourage me to keep on towards quitting.

"Top half of my new dry wipe board. Every morning as I hit the alarm I see these names and pray for healing. All are fighting something known or unknown and all hold an important place in my heart." Angela Phoenix Rising Coates

AND she sent me these supplement products which arrived just in time to relieve the constipation I was having from chemo..

THANK YOU THANK YOU THANK YOU Phoenix Rising. I looked for a picture of us together in some of my cd's but couldn't find one. Definitely need to get one at Trail Days!