BROTHER THROWING UP

Transported my brother to the cancer center for his infusion today.  He threw up his morning tube feeding and had diarrhea as well.  Not sure what brought that on.

He is feeling pretty down and thinks he is regressing with his recovery.  I stressed that he is only 2 months out of treatment and things will get better.  It just takes a long time.

He had been scheduled for his 3 month PET scan on January 6th.

ANEMIA IMPROVING

Transported my brother to his appointment with the Medical Oncologist today.  He stated that my brother has shown some improvement.  We informed him that the iron supplement for his anemia seems to be working and he is feeling stronger and no longer needing a wheelchair.  His lab results showed an improvement in his anemia.  His wife checked on past lab results and they all showed that he was anemic since the beginning of treatment.  She asked why he was not given iron all this time.  Doctor said that the body usually replenishes the iron on its own.  However, in my brother's case it only got worse.  So it seems somebody dropped the ball in this case.

My brother told the doctor that he would like to attend physical therapy at the hospital but not that interested in speech therapy as he has no trouble swallowing.  

We discussed his first PET scan that is due in the middle of January and the doctor said he would start the process of getting that scheduled.

We then went to the Infusion Center for him to get his weekly fluids.  He has gained a few pounds and is only eating broth by mouth and using his PEG tube for his protein drinks.  It is still not enough as he feels that he still needs the infusions as he feels so much better afterwards.  He spoke to his Dietician today as well.

BROTHER'S ONCE A WEEK INFUSION

Transported my brother to the cancer center for his labs and infusion yesterday.  He also saw the nurse practitioner who informed him that he has lost a lot of muscle mass and would benefit from physical therapy.  She also said that his lab results showed that he was anemic.  

This would explain why he is so weak.  Today was the first time that he needed a wheelchair to get around.  He gets light headed due to his low blood pressure.  She advised him to have all his medications checked by his doctor.  She gave him a hand out listing different liquid iron supplements and foods that he can eat to help with his anemia.  He will be getting another infusion next Tuesday.  Not sure when they are going to cut him off completely as he is still getting dehydrated.  

He had a Swallow Study done and was told that he can be on a soft diet.  He is eating by mouth a little and still using his PEG tube for protein drinks.   

Today he went to his cardiologist and had his pacemaker checked which is fine and also had an echocardiogram.  His heart is fine.

BROTHER SIPPED GUMBO BROTH TODAY

My brother tasted broth for the first time today.  Still using PEG tube.

He had an appointment with the Speech Therapist yesterday.

Tomorrow he sees his ENT doctor.  He is concerned about pain in his neck where lymph node cancer was.  I told him it was probably lymphedema.  My lymphedema still hurts in my neck, if touched, as well.  He fears the cancer has returned.

BROTHER'S FIRST DRINK OF WATER

Transported my brother yesterday to his infusion appointment and Radiology Oncologist appointment.  His doctor looked at his throat and allowed me to look on as well.  His throat was full of mucous which made it hard to see the throat.  The doctor wanted to scope him but decided not to due to his thrush.

The doctor stressed the need for him to begin drinking water.  My brother has refused to ingest anything by mouth.  I have stressed to him the need for sips of water often.

He also had a visit with his dietician who stressed the need for him to begin drinking fluids by mouth.  He informed her that he does not drink anything as it nauseates him and gags him.

I tried to explain to him that things will improve - but slowly.  He is running out of patience and I can understand that.  However, I feel that he needs to take more responsibility for his recovery.

He is now scheduled for only one infusion a week and he is afraid that it won't be enough.  We all feel that he needs to start hydrating himself at home and not rely on the infusions.

So this morning I received a text from him stating that he drank 3 sips of water last night and did not gag.  He expressed fear that it might go down the wrong way.  I explained to him that he would choke and cough if it did.  He said that it didn't.  He wanted to know if he should try some soup now.  I said he could try some warm soup broth but nothing else till he has the Swallow Study.  They will then tell him what he can ingest by mouth.  

Told him to sip water all during the day to help train his throat muscles again.  I hope he does this.

   

    

BROTHER'S GOT THRUSH

Transported my brother to his appointment with the Medical Oncologist.  He told him it looks real good that the cancer is gone.  He looked in his mouth and saw that he had Thrush.  Gave him a prescription for it.  Wants to see him back in 2 weeks.

He was very weak today and his lab work showed his white blood cell count was low and his potassium and magnesium were low as well.  He received his infusion of fluids with nausea meds, and potassium and magnesium.

He will be receiving one more week of fluids on Monday and Thursday then it will be cut back to once a week.  He was told that he would have to start hydrating himself at home.  He needs to take sips of water by mouth which he is not doing.  Says it hurts to swallow but tells his doctors that he is not in any pain and won't take any pain meds.  Does not gargle like he should with the magic mouthwash which contains Nystatin for prevention of Thrush and mouth sores.

Not sure why he is non compliant.

HOW I LOVE BACON

Just finished a wonderful breakfast of bacon and egg, English Muffin and hot chocolate.  Of course I was only able to eat half of the egg, one quarter of the muffin, and a couple of strips of bacon that I chewed till all flavor gone then spit out.  It was great.  I've come a long way in these last two years since treatment.  

Still don't have 100% saliva back but do have a small amount that helps me break down foods and swallow easier.  Meat and bread are always going to be a problem it seems.  However, after almost 2 years of being a vegetarian I can once again enjoy the taste of bread and meat with an occasional ability to swallow.

Today is a good day.

I'm enjoying this cool 60 degree weather we are having.  Fireplace is going and I'm snuggled up on the sofa with my electric lap blanket and my fur babies watching great television on Netflix.  

Today is a good day.

I'm once again working in my art studio that had become a store room over the last 2 years.  Tried cleaning out a lot of stuff to have room for my next project.  It is still overcrowded but I can at least have a small space on a table to create.

Since starting my front courtyard container garden I have grown lots and lots of ivy.  So much ivy that I started to give some away.  Then I decided to take some small cuttings and root them, plant them in small containers and sell them on Facebook Marketplace.

In order to keep the cost down, I thought I would use small containers that I can recycle from what I use at home.  I started with my coffee containers then used my butter containers then tried cat litter containers.  Finally decided to use styrofoam cups.  I drill holes in the bottom of these containers and then paint and decorate them.  Then add the soil and the cuttings.  I am really enjoying this project and look forward to making a few dollars.

I purchased some cute supplies at the craft store but the cost will be too high in order to make a profit.  So the cups are a great idea.  They are 20 for $.98 while the butter, coffee, and litter containers are between $3 and $5 and not available to me for a length of time.  

So off I go... creating and painting - once again.

Today is a good day.

My small work space.

Getting some inventory ready for plants.

These are so cute but will bring the price up.

The painted cups fit perfectly in these containers.

These were only $.99 but are too small. 

These are the coffee containers.

This is the bottom of a cat litter container covered with burlap.  

BROTHER STILL HAVING TROUBLE WITH NAUSEA

Transported my brother to the cancer center today for his lab work and infusion of fluids.  He is feeling really bad and is low on potassium and magnesium.  They added these in his infusion and also included nausea meds and steroids.  This always makes him feel better but lasts only about 2 days.  He is to see the Radiation Oncologist next Wednesday.

He also met with his dietician who gave him a new feeding schedule for his PEG tube.  She said that he had maintained his weight so well that he could cut down his feeding to 4 times a day and only one box of the protein drink.

BROTHER'S FOLLOW UP APPOINTMENT WITH RADIATION ONCOLOGIST

Transported my brother to the cancer center today.  His wife met us there.  We all met with the Radiation Oncologist who examined his neck and looked in his throat and said it all looked good.  He paid special attention to the burn on his neck.  Gave him a script for antibiotic cream.  Wants to see him in one week.

My brother's main complaint is the pain from the neck burn.  He is not complaining about pain in his throat which is rare.  His doctor said that this is the time when the pain really kicks in.  At this point in my treatment I was in some really bad pain and taking a lot of pain meds.

He was in a really bad mood today.  Seems angry at everybody.  Wants it to be all over.  In a way, it has just begun. 

BROTHER COMPLETED CHEMO AND RADIATION TREATMENT TODAY

Drove my brother to the cancer center this morning for his last of 3 chemo treatments and the last of 35 radiation treatments.  He was given a Ring The Bell ceremony at each department and given a small bell as a remembrance.  He also received a certificate from each department which was signed by the nurses and technicians.

It was a very long day.  We were there around 8:00am and left after 5:00pm.  He will still be going in for his fluid infusion every few days until he can maintain on his own.  It will probably be several weeks of infusions as the chemo treatment really takes its toll on his fluid balance.

The radiation burn on his neck is not looking good but will soon be on the mend.  He is putting two different types of cream on the burn.

His Medical Oncologist looked into his throat and said there is a hole where the tumor was.  He asked his wife and I if we wanted to see and we said yes - so we took a peek.  The two lymph nodes in his neck has reduced as well.  He won't be getting a PET scan for 3 months at which time we will know for sure if he is cancer free.  His Radiation Oncologist feels that it will be good news.

With radiation treatment you still cook for 4 to 6 weeks following the last treatment so he has a way to go with pain and discomfort.  Recovery is a slow process but it will get better.   He will probably continue feeding through his PEG tube for several more months.  He is getting good nutrition and keeping his weight at a good level - only lost a few pounds.  

BROTHER HAS BLISTER ON NECK.

On Monday October 7, I transported my brother to the cancer center for his radiation treatment and infusion.  He requested to see the Radiation Oncologist prior to his treatment in order to speak to him about the breakdown of the skin on his neck.  He was worried that the continued radiation treatments would make his neck worse and he feared an infection. 

The doctor he usually sees was out but he was able to see another oncologist named Dr. Low.  This doctor took a long time to explain things to him.  He went into detail as to what my brother could expect if he discontinued treatment.  It's a pretty horrible way to die from head and neck cancer.

He stressed the importance of nutrition.  His body needs the protein in order to heal.  My brother does not understand that the infusions he receives is not nutrition.  However, he is fighting nausea and does throw up his feedings so in order to keep his protein drinks down he needs to feed through his tube a lot slower and more often.

The doctor did mention continuous bag feeding which I had explained to my brother earlier.  However, the doctor said that he should wait on that and just try feeding slower and more often.

The doctor said his neck was not infected and gave him a script for Silverdeen cream.  Also said that it will get worse as the treatments continue.  He said that he could also give him an antibiotic patch that he can put on a couple of times a day.  This will all help him get through to his last treatment.  He only had 7 left at that time.

My brother will be receiving fluids every other day now -   Monday, Wednesday, and Friday.   The infusion includes nausea meds so this along with the 3 nausea pills he takes should help.

He is looking pretty bad these days.  Cheeks sunken in and eyes dark and sad.  He said he just wanted to die.  He doesn't feel that he is going to make it through this ordeal.

BROTHER DEHYDRATED AGAIN 7 DAYS AFTER SECOND CHEMO TREATMENT

It's been two days since his last infusion and he is really sick.  Very weak and nauseated.  Can not tolerate tube feeding.  Looks very bad with cheeks sunken in.  Very dehydrated.  The second chemo treatment is really kicking and taking its toll.

His neck is also starting to peel and crack from the radiation.  He is not cleaning it as he should and putting Aquaphor ointment several times a day.  He is not taking in the amount of water he needs to help with the dehydration.  He also refused Speech Therapy which would teach him how to help in swallowing.  I don't think this is the right time for that.  Maybe in a few weeks.  Right now he is not taking anything by mouth.

I spoke with his wife about getting an order for fluid infusion every day.  Also encouraged inpatient treatment for the third chemo treatment and after.

We will see the Medical Oncologist on the 16th prior to his third chemo treatment.  Hopefully we can discuss these issues at that time.

He is having the expected discomfort of no taste buds and smell is off - but no pain.  

Today he said he just wanted to die.  So little energy he used signs in order to communicate with us.  His throat is not hurting him, however, that radiation pain will be here in a few more weeks.

BROTHER'S SECOND CHEMO TREATMENT

Met my brother at the cancer center this morning.  He had already had his labs and was waiting to see the Medical Oncologist.  I was just in time.  The doctor was very encouraging and said that my brother was progressing nicely.  His labs were fine.  He has been using his tube for feeding and for liquid magnesium and potassium.  He also said that he would only have to have 3 chemo treatments and not 4 as he was originally told by the Radiation Oncologist.  That is good  news. 

He told the doctor that he gets dizzy and weak easily and that is probably from the low blood pressure he had been experiencing lately.  He is still not ingesting enough water and is dehydrated again.  So today he will be getting lots of fluids and chemo as well.

I stayed with him for about an hour then came home.  He is in a private room today as he will be doing a tube feeding at noon.  He is no longer swallowing food due to the taste buds being affected by the radiation.

Tomorrow he will be seeing his heart doctor and ask about his low blood pressure.  He then will be back at the cancer center for more fluids.

Today he had his 20th radiation treatment out of 35.

BROTHER'S 17th RADIATION TREATMENT

Drove my brother to the cardiac center this morning to have his pacemaker checked.  It is fine.  We then went to the cancer center where he had lab work done to see if he would be able to have his second chemo treatment today.  His magnesium and potassium numbers were fine but his white blood cells were still very low.  So all he received today was saline in his infusion - lasting an hour and a half.

He had a meeting with the nurse practitioner Rose and asked several questions which helped clarify what is expected of him to maintain his different blood levels.  She advised him to take a teaspoon of liquid magnesium and a teaspoon of potassium in 6 to 8 ounces of water and use as a flush into his PEG tube on a daily basis.  This will help to keep his blood levels up.  Rose expects that he will be able to take his second chemo treatment in about 5 days if his white blood cell count has improved.  This will push his treatment completion date by a week which will end on the same day as his radiation - October 16.

He asked if could take the flu shot and she advised to take it the third week after his next chemo treatment right before taking his third chemo.  She also cautioned about being in crowds or around people who have been exposed to others who have the flu.

We then went down to the radiation department for his 17th treatment. 

BROTHER'S SECOND CHEMO CANCELLED

My brother was not able to take his second chemo treatment due to his dehydration, low blood pressure, and he was in afib.  They are going to let his body replenish his white blood cells before any further chemo.  He received more fluids with magnesium and potassium.

He is still getting his radiation treatments.  Just had number 16.

APOPTOSIS

Apoptosis is when a cell commits suicide.

Scientists are trying to learn how they can modulate apoptosis, so that they can control which cells live and which undergo programmed cell death. Anti-cancer drugs and radiation, for example, work by triggering apoptosis in diseased cells. 

Many diseases and disorders are linked with the life and death of cells -- increased apoptosis is a characteristic of AIDS, Alzheimer's and Parkinson's disease, while decreased apoptosis can signal lupus or cancer. Understanding how to regulate apoptosis could be the first step to treating these conditions.

BROTHER'S FIRST TUBE FEEDING AFTER 12th RADIATION TREATMENT

Lab results show that he does not have sepsis.  I guess the fever is just from the chemo.  I researched chemo fever and it is a disorder that usually means an infection is present.  Don't know what to think at this point.

Chemotherapy often leads to a reduced white blood cell count, called neutropenia. This condition causes the patient's body to be less effective at fighting off infection. Neutropenic fever is common in chemotherapy patients. Fever can indicate infection.

An infection or sepsis can happen at any time. However, when your body has very low levels of a certain type of white blood cell (neutrophils), your risk of getting an infection that can lead to sepsis increases. This condition is a common side effect of chemo called neutropenia.

He used his PEG tube for the first time with a protein drink.  He threw up when he tried to swallow it so agreed to use the tube.  He is still able to swallow with little discomfort.  However, his taste buds are starting to reject food.  His sense of smell has not yet been affected.  He'll get used to it in time as everything will have to go into the tube as the radiation kicks in.

He really should not be rocking. LOL

BROTHER RUNNING FEVER AGAIN - MORE LAB WORK

Met my brother at the cancer center today.  Had labs which showed he was dehydrated again so will be getting fluids for about 2 hours.  His nurse practitioner came and spoke to us and said that the fever is usually caused by the reaction the chemo is having on the cancer.  It's like they are in battle and I wonder who will win.

She ordered more blood work, urinalysis, and a chest x ray.  Will know results tomorrow.

She said that she wants him to receive fluids 2 to 3 times a week from now on.  I think this is a good idea as he will be getting a lot sicker when the radiation kicks in which should be in another week or two.

He now weighs 189 pounds.  Has gained back a few pounds since last week.

BROTHER RUNNING FEVER

My brother ran a fever that his nurse practitioner was concerned about.  She instructed him to go to the emergency room if it did not reduce with aspirin.  He took some Tylenol and it went down.

The next day his blood work showed that his potassium and magnesium were very low and he was dehydrated again.  So back in for more fluids.  This time he was there for over 4 hours.  I stayed with him till 4:00.  He was back home by 6:00 and feeling good.

Today he goes in for his daily radiation treatment and will drive himself. 

I encouraged him to eat some bananas to help with the potassium.  Not sure how much that will help but it couldn't hurt.  He admitted that he is not drinking the amount of water that he was told to drink which is 4 bottles a day.  He could use his PEG tube but does not want to at this time.  He does not seem to understand what his role in his treatment consists of.  This could easily be his undoing.

BROTHER HITTING THE BRICK WALL

His first chemo treatment made itself known about 5 days after receiving it.  He became weak and could not get the nausea under control.  Was not taking the meds as prescribed.  Had to go in for infusion.  They gave him saline, nausea meds, and steroids.  We were there all day.  He felt better and was able to eat once again.  He lost almost 10 pounds in one week.

His nurse practitioner ordered fluids twice a week as he is not hydrating at home.  I'm glad for this because he is alone all day and can not remember what he is to do.  Is now on 3 nausea meds and all the fluids he is receiving is keeping him feeling good and able to eat.

He is driving himself to the clinic once again.

I'm hoping he gains some of that weight back as he will lose more when the radiation kicks in which will be in a few weeks.

BROTHER'S SECOND RADIATION TREATMENT AND SALINE INFUSION

My brother drove himself to and from his treatments today.  I met him at the Cardiac Clinic for his pacemaker check and an EKG to see if anything was affected by the cancer treatments.  His cardiologist said everything is fine and he does not know why the Radiation Oncologist suggested he be seen by the Cardiologist.

However, the Cardiologist did schedule a weekly visit for a pacemaker interrogation by placing a wand over the chest where the device is located. It takes only 10 or 15 minutes.  So it was set for every Friday at 2:30 in the afternoon - right after his radiation treatment scheduled for 1:45.

They are keeping very close tabs on all of his fluid levels and pacemaker.  I'm very impressed with the high degree of care he is receiving from the Chemo Therapy Department.

Today he received one infusion bag of saline solution which took an hour and a half.  No chemo today.  Yesterday he had saline and steroids and nausea meds then his chemo.

His wife brought him some lunch and I went to the cafeteria and ate.  By the time I returned it was about time to leave for the Radiation Department.

He had his ten minute treatment and all went well and he drove himself home.

On September 4th he is scheduled to have Lab work at 1:30 then his radiation treatment at 1:45 then see the Nurse Practitioner Ms. Rose at 2:00.

  

BROTHER'S FIRST CHEMO AND RADIATION TREATMENT

Picked up my brother at his house at 7:30am and drove to the cancer center.  He received two infusions of fluids containing various elements including steroids and nausea meds.  Then after each bag of fluids his lines were flushed with more fluids.  That took 4 hours.  Then he was given the chemo fluids which took another 2 hours to drip into his port followed by more fluids.  He finished right after 4:00pm.

He went to the radiation department at around 4:30 for his first radiation treatment.  They tested his pacemaker to see if it was affected by the chemo and radiation and showed the Oncologist who now wants him to see his Cardiologist tomorrow morning before any more treatments.  Something on the reading of the pacemaker has the doctor concerned.  So tomorrow morning before his infusion at 11:30 he needs to see Dr. Abben at the Cardiac Center.  If all is ok he will get fluids only - no chemo - and then after lunch his daily radiation treatment. 

It was a long day for both of us.  His wife brought him some lunch and I came home for an hour or so and then returned till all was done.  He returned home with his wife.

I'll be picking him up tomorrow morning at 7:30 to go to the Cardiac Center and then to the Cancer Center for fluids and his second radiation treatment.

I'm calling his cancer Jack.

Finally got approved for his meds after several phone calls.

BROTHER'S APPOINTMENT AT CANCER CENTER FOR BLOOD WORK PRIOR TO FIRST TREATMENT

Met my brother at the cancer center for his blood work prior to his first Chemo and Radiation treatment tomorrow.  All results in normal range.

We had a long visit with the Nurse  Practitioner Ms. Rose and got a lot of information from her.

After his first chemo tomorrow he will be sent to the Radiation Center for his first treatment there.  Then the next day he is to return to the chemo department for a check on his blood work and for fluids if needed.  Then to the radiation department for his second treatment.  She said that he will feel the effects for a few days after his first treatment.

He is to go 5 days a week for radiation treatments and once every 3 weeks for chemo.

We were shown the chemo room and there were a lot of chairs and a lot of people in them receiving chemo.  There was a whole wall of windows with a great view of the trees and sky outside.  There was a bathroom on one end of the room and also a place with food and snacks on the other side of the room.

It was kinda strange looking to me.  These patients were sitting comfortably in their soft reclining chairs - hooked up to the IV bags and doing normal things like reading, using their phones and computers.  It just looked surreal.  Like something out of a futuristic movie.  All these patients with cancer doing normal things while hooked up to poison that will try and kill the cancer growing in them and could possibly kill them as well.  Poison that will make them really ill and leave them with many side effects.  I'll never forget the feeling I got when I walked into that room.  The scene is burned into my mind.

I really liked the nurse practitioner who did a great job of explaining the procedure and what to expect.  In my opinion, chemo patients receive a lot of attention to detail and closely cared for - more so than radiation patients.  

I would have needed fluids on many occasions during my radiation treatments but it was not mentioned or offered to me.  In fact it was ignored when I showed symptoms of dehydration.  At one point I had to sit down outside of the center as I felt that I would faint.  A friend was with me and wanted to drive me home but I rested a while then drove home.  I was really sick at this point which was early in my treatment.

We all left the center and all felt overwhelmed by the experience.  I will be driving him to all of his treatments starting tomorrow at 7:30am.

BROTHER'S SIMULATION FOR RADIATION MASK

Met my brother at the cancer center today for his run through with the radiation mask.  Took many photos of him on the radiation table with the mask on.  He did not receive radiation today it was just to see if the measurements were in line.  Took about 10 minutes.  It also gave him a good idea of how the treatments were going to be.  After complaining that it was too tight around his throat they adjusted it and he went through it well.  

He expressed how he does not understand why he has to have chemo.  I reminded him that his tumor is larger than mine was and that he needs more aggressive therapy.  The techs agreed.  He seems to be remembering things differently than what was explained to him by the oncologists.

He is having some problems with low blood pressure.  Told him to talk to his family doctor about this.

His mouth is still not healed completely and today is day 7.  There is some bruising on the outside of his jaw.

He will be hearing from his chemo doctor and radiation doctor as soon as the results of today's run through are calculated and when the oral surgeon has released him.  He sees the surgeon this afternoon.

They want to do chemo and radiation at the same time.  I'm thinking in about two weeks.

Putting on the dreaded mask.

Taking measurements.

I'm in awe of this machine and the power it has.

The Elekta Proton Accelerator in rotation.  

Photo blurry as my hands began to shake.  Memories... you know.

Coming out and glad it's over.

BROTHER'S ORAL SURGERY FOR TEETH EXTRACTION

Met my brother and his wife at the surgeon's office this morning.  He was taken in at 9:30am and we returned home by 11:30am.  All went well.  Thirteen teeth removed.

I changed his mouth dressing while his wife went to the store to obtain items he will be needing.  Can only have cold liquids today.  Tomorrow will need to rinse with salt water.  Then he can have soup and ice cream, etc.  Will return to surgeon in a week for follow up.

MAMO RESULTS

Mammogram results showed no lump or mass but scattered fibroglandular elements are present.  Will continue to get scanned every year.

MAMMOGRAM

Had a mammogram done yesterday.  Last one was done in February of 2017 - a couple of months before finding the enlarged lymph node in my neck and my ensuing battle with cancer.

SECOND CLEANING OF STOMA

Went to my brother's house yesterday to flush his tube and clean his stoma.  It had a good deal of blood on the gauze and was hard to clean it all out.  I feel that it needs to be loosened as it a appears too tight against his body.  Didn't see any more bleeding after placing a new gauze with antibiotic cream.

My main concern now is that he hasn't had a bowel movement in 3 days and is taking pain meds which has him constipated.  I warned him about the dangers of an impaction.  Encouraged him to take Miralax when taking the hydrocodone.  Hope it works today.

BROTHER HAVING FEVER AGAIN

My brother is running a low grade fever again today.  I went over to flush his tube and clean his stoma.  Told him to take a pain pill before I clean his wound as it would hurt.  So he took one hydrocodone which brought his fever down as well. 

He is complaining of pain in his side and back under his shoulder blade on the left side.  Is worried that it is a collapsed lung.  I did some research and a symptom would include coughing which he does not have so we both think it is a pulled muscle from pulling himself up out of bed.  Will take a wait and see on this.

MY 72nd BIRTHDAY SPENT IN THE HOSPITAL

My brother had his surgery today for placement of the PEG tube and the Port.  Surgery went well and after a long period in recovery he was sent home with pain meds.  

A few hours later he developed a fever of 102.4 and his wife placed a call to the Gastro doctor who said to take him to ER.  Spent the next 3 hours in ER waiting for results of blood work and chest X-Ray.  I left at around 9:00 pm and still no results.  He was admitted to the 5th floor which is the surgery floor of the hospital.

The next morning he was informed that all of his tests were normal and that he would be getting IV antibiotics and a 2 night stay.  He was discharged with "fever of unknown origin" and sent home with no antibiotics.

BROTHER'S APPOINTMENT WITH ORAL SURGEON

Met my brother at the surgeon's office today for his dental evaluation.  Gave him the protein drinks I purchased for him as well as a print out of an outline I typed up showing the dates of all of my procedures and recovery from my cancer journey.  This will show him the time frame of my recovery which he has asked questions about. 

The surgeon examined his teeth and gums and advised him on the best way to approach the situation.  After a time my brother decided it best to have all of remaining teeth pulled.  He asked questions concerning the blood thinner he is taking for his AFib and the surgeon said he would talk with his cardiologist about this.

The doctor informed him that he will not be getting dental plates until after his cancer treatment is complete as it will be very uncomfortable to get used to his new teeth while going through chemo and radiation.

My brother is concerned about being able to eat but was reminded that he will have a stomach tube for use when he can no longer swallow.  Before that he will just have to eat soft foods and protein drinks.

When we got to the front desk to check out he was informed about the cost and how much the insurance would cover.  He will have to pay $2000 out of pocket as his share of the cost.  They gave him a tentative appointment for August 12th.

It was a rough day for him and I came home in really a sad mood.  

Next stop is surgery for placement of the PEG tube and Port in 3 days.  He is currently off of his blood thinner.  

MY ONCOLOGIST APPOINTMENT

My Oncologist appointment went well yesterday.  He was very pleased with the improvements since my last visit with him 6 months ago.  I informed him that I can eat almost anything except steak and hamburger meat.  I have regained about 50% of my saliva which helps with swallowing foods I was not able to swallow before.  I have gained 5 pounds in the last 6 months which I am not happy about.  However, I enjoy my cake and ice cream every day.  I now weigh 156 pounds.

My throat does not hurt anymore and is barely red.  I do still have days when I am hoarse and think it is due to the foods I am eating.

Talked to him about some recent pain in my right side under my breast.  He felt the area and said it could be cartilage pain and to have my family doctor check it out.  I made an appointment for next Thursday - August 1st at 2:20 with Dr. Scott Haydel. 

I will be seeing my Oncologist again in 6 months.  

Later in the afternoon I met with my brother and his wife to go over some information he will need that will help him with his cancer treatment.  I showed him all of the items that are in my Survival Box that I used on a daily basis to combat the effects of my radiation treatment.  He said he would not remember all of the things I told him.  I explained that I wrote all the info down and gave him the paper.  His wife will be purchasing the items on the list.  I offered to do his first few tube feedings until he felt that he could do them himself.

BROTHER'S APPOINTMENT WITH SURGEON AND GASTRO DOCTOR

Met my brother at the doctor's office today.  First he met with a surgeon who will be placing a port in his right shoulder.  The procedure was explained to him.  We informed the doctor that we want this procedure and the PEG tube to be placed at the same time.  The doctor said he would communicate with the Gastro doctor and they would perform these two procedures at the same time.

Later that afternoon we met with the Gastro doctor who explained the PEG placement procedure in detail and answered all questions.  He then made a phone call to the surgeon and they came up with a date for the surgery.  It will be on August 2 which is also my 72nd birthday.  

My brother's next doctor's appointment is on July 30th with an Oral Surgeon to evaluate his teeth and schedule surgery to remove any that are in bad shape.  Then when he is healed from this he will have his first radiation and chemo treatments.

All this preparation is overwhelming to him but necessary in order to begin treatment.  

BROTHER'S MEDICAL ONCOLOGIST APPOINTMENT

Went with my brother to his Medical Oncologist appointment today.  The doctor explained in detail about the Chemotherapy he will be receiving.  He will be getting 3 rounds of Cisplatin to be given every 3 weeks.  He may also be given a 4th round.

He was informed that this will be causing some painful discomfort in the throat area as well as what the radiation will be causing at the same time.  

The doctor said that he was a Stage II - Squamous Cell Carcinoma - HPV 16+ which has a high rate of survival but did not say what percent.

So now he has an appointment next week with the Gastro doctor for a consult on the PEG tube placement.  Then a consult with a doctor for the Port placement to be done at the same time.

The following week is his appointment with the Oral Surgeon to see if he needs to have all of his teeth pulled.  

The Medical Oncologist wanted to start treatment the first week of August but that won't be possible due to the dental appointment so said he would wait and see what the dentist says and then begin about 7 days after dental work is completed.  

My brother was a bit overwhelmed again today.  Voiced concerns about his blood thinner and pacemaker and how this treatment will affect these things.   He was assured that this will be monitored and care taken.

He does not have his whole heart into fighting this cancer and stated it may not be worth the effort if his chances are slim.

His wife and I are giving encouragement and hope it is helping him some.

BROTHER'S PET SCAN RESULTS

Drove my brother to his Radiation Oncology appointment.  The doctor explained in detail exactly what he will be experiencing with radiation.  He will receive radiation 5 days a week for 35 total treatments.  He will also be getting Chemotherapy.  He needs to see a different Oncologist for information on that treatment which will be administered at the same time.  He is waiting for a call to schedule that appointment.

According to his PET Scan results, his cancer is localized to head and neck which is good news.  However, his cancer is advanced and larger than what I had so his treatment and recovery will be more painful.  He was given a 60 to 70% chance for cure.

He needs to see an Oral Surgeon to have an eval on his teeth.  May need them all pulled.  Also needs to see a Gastro doctor to have a PEG tube placed for tube feeding.  Will be getting a port placed in order to receive Chemo.

He was given a lot of info today and is pretty much wiped out about it all.   So am I.

THROAT CANCER STRIKES AGAIN - MY BROTHER

Spent this morning at the hospital with my older brother who had a biopsy done on his right tonsil.  Came back as Squamous Cell Carcinoma with metastasis in a lymph node on the right side.  Won't know of it is HPV+16 till next week.

So that makes 3 members of my family who have had SCC of the throat.  My father and my brother were both heavy drinkers and smokers.  I was not.

I'm pretty sure he has had it for at least a year or more.  So while he was helping me go through my battle he also had cancer and didn't know it.

CAT SCAN FINDINGS

FINDINGS:

The rib parotid glands appear unremarkable. The submandibular glands are atrophic (radiation fried my saliva glands).

There is a stable 5 mm stone in the right submandibular duct. 

No enlarged cervical lymph nodes are seen. 

No laryngeal mass is identified.   

There is a 1.6 cm nodule in the right lobe of the thyroid, decreased from 03/07/2018.    (This is good news.)

Images through the upper lungs demonstrate no significant abnormality.

ANOTHER CAT SCAN WITH CONTRAST

Had a CAT Scan with contrast today.  Had to take pre meds due to my allergy to the contrast dye they insert into my vein.

They wanted me to pay a co-payment of $199 but I informed them that I am on Financial Assistance from the hospital.  I made a partial payment then after the scan spoke with Jennifer in Financial Services Department.  She said that I have not yet been approved.  I informed her that I had received a letter last month stating that I was approved.  She does not have a record of that.  When I came home I found the letter I received last month stating I was approved for 90% free care.  Will wait to receive a bill then contact her again.

ENT APPOINTMENT

Saw Dr. Beyer today and informed him of the pain in my throat and ear for the last few weeks.  This pain is similar to what I experienced before I was diagnosed 2 years ago.  I am a bit concerned.  

He scoped me and said everything looked fine.  However, he ordered a CAT Scan with contrast and pre meds for my allergy to the contrast.

I'm going to have to pay the deductible of $250 I guess.  Will know in a couple of days when the appointment is made for the scan.

SURVIVING CANCER

Here are some insights to celebrate my upcoming 2 year recovery from Oropharyngeal Cancer.

1. When I say, “I’m fine,” I’m lying. Why? Because I can’t stand to explain what I’m going through one more time. Because every time I do, I remind myself of the details. 

No, I’m not okay. I’m different. My current different may be less bad than when I was in treatment or immediately after treatment. But that does not mean I’m okay. In order to kill my cancer, they nearly killed me. I may be okay, eventually. Or I may just have to get used to my “new normal.” (I hate that phrase!) One thing I will never be is, “who I was before.” I’m going to have to get used to that.  I may have been cured of the cancer but I still have the HPV+ virus that gave me cancer.  And if my immune system crashes again the cancer will most likely return.  That's just how it works.

2. When you ask me if I’m afraid and I say, “no,” I’m lying. It's always on my mind that it might return.

3. When you ask, “What can I do to help?” it makes me want to scream. I am facing the most physically, psychologically, and emotionally trying ordeal of my life. Don’t make me evaluate your willingness or ability to do any of the 1,001 things on my To Do list. Make a specific offer of something you’re already willing and able to do to help. “Can I wash your car?” "Can I walk the dogs?" “Can I do your laundry?” Or, just show up and do something. I promise, if I look out the window and see you mowing my lawn, I will not call the police.

4. If you offer to help, and I accept your offer, do what you say you will do.  Be the stability that I’m having a really hard time finding right now.  My treatment may not be as effective as I had hoped.  My side effects may be worse than I was told. My recovery may take longer than I was promised.  Remember, the real pain begins after treatment ends.

5. Yes, someone else has told me about your herbal tea, essential oil, eye of newt, holistic lip balm that will magically cure my cancer in one application. But since my care team has never heard of it and they cure people with cancer every day, I’m going to sincerely thank you for your compassion while ignoring your advice, however heartfelt it may be. If you persist in promoting “alternative cures,” I may also block you on social media and even in real life.

6. Yes, I’m lonely. Cancer is not just a disease, it’s a place. Once you get here, you can never go back. It’s lonely here. And often, being alone makes it even scarier. Just come sit with me. You do NOT have to say the right thing. You don’t have to say ANYthing. Just being with me matters.

On the flip side of that coin, while I am lonely, sometimes I also need to be alone. Because, sometimes, I just need to be able to think, or to kick a piece of furniture, or to punch a wall.  Please don’t be offended. It’s not you, it’s me.

Yes, it’s a paradox. If you want to know whether I need you, or need to be alone, you’ll just have to work up the courage to ask.

7. Unless you have had cancer – and in many cases, unless you have had the same cancer as the survivor you’re talking to – no, you do not understand. Please stop saying that you do. It hurts. It also hurts when you question my symptoms or side effects. Stop trying to make cancer make sense. Stop trying to make cancer treatment make sense. Stop trying to make the side effects of cancer treatment make sense. We’re talking about cancer. None of it makes sense.

8. So much I don’t know. I don’t know if my cancer will return, though I’ve read every study ever done about my particular cancer and can quote all the relevant statistics. I don’t know if my side effects are permanent or temporary. I don’t know if my side effects will get better or worse. I don’t know if my “new normal” will be enjoyable, just bearable, or intolerable. I just don’t know.

9. But, I’m okay with not knowing. Why? Because regardless of what other adversity I have faced in my life, nothing – I mean nothing – has brought me more strength and belief in myself more than being diagnosed with, undergoing treatment for, and surviving cancer.   I learned that I am a warrior and have the armour to prove it.  My radiation mask hangs on my wall as a reminder of the inner strength I found that I didn't know I had - to endure this torture.

10. My name is Linda Corley and I am a cancer survivor.