SECOND RADIATION TREATMENT TODAY

Yesterday was my first treatment...  I was very surprised when they told me it was over. I was expecting for it to last longer. For what I have read, the treatments last about 15 minutes. I was done in 10. Just when I was beginning to relax it was over. Not sure if all my treatments will last that long but I sure hope they do. 

Still had trouble with the mask being too tight on my neck where I could not swallow. I had to push my head up to the top of the mask to swallow. I didn't want to move so I just didn't swallow. My mouth was so dry from anxiety I didn't feel like swallowing. My appointment was for 3:30 and I was home for 4:00. My neighbor drove me to and from the clinic. 

Felt pretty good for the first few hours and took a nap.  I felt a little nausea on the ride home but I think it was because I was hungry.  I used my Fluoride trays for the first time and used the Aloe cream on my neck. This will be my ritual from now on. 

After about 4 hours I started feeling sick.  Lots of nausea and a headache.  Plus some constipation which was really painful.  I had taken some pain meds for the pain in my stoma several days ago and this is the result.  I no longer am taking pain meds.  I didn't get much sleep and tried everything I could to relieve the constipation but nothing worked.  Will get different meds tomorrow.  This was a little disappointing for my first treatment.  


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Today was my second treatment.  My neighbor Evelyn drove me to the clinic.  Took only one Xanax as I felt very little anxiety.  Went through treatment with no problems.  I will be seeing my Oncologist on Monday and will ask for something for nausea.  Bought some Miralax and took a dose around 4:30 today but still no relief.  If it weren't for this problem, I would not feel so bad considering being shot with radiation.  I will have to remember to take a stool softener when I begin taking pain meds later during treatment.

FIRST OF 35 RADIATION TREATMENTS SCHEDULED TO START TOMORROW

Received a call from the Cancer Center.  I was set up for a practice run-through and a Verification of measurements today at 3:30.  I finally got to meet Elekta, the Linear Accelerator.  When I entered the Mother Ship - LOL, there it was in all its glory.  It is indeed a foreign, alien, space-age looking machine.  But I think about it as the  machine that will save my life.  

I had to wear the mask and it was a little tight around my throat and took a while before I could manage to arrange my head where I could swallow.  Then the procedure began.  The machine made one rotation and paused several times during the process.  This took about 10 minutes then I was finished.  I could fully open my eyes this time and clearly see what was happening.  The mask around my eyes was not as tight as when I had it molded. 

So tomorrow I take my first Radiation Treatment (exactly 2 months since diagnosis) that will last 15 minutes.  Ten minutes wasn't so bad - so I imagine 15 minutes won't be as hard as I had imagined it might be.  Of course I attribute all this positive attitude to my friend Xanax... which I took two .5 mg. and hour prior to  my appointment and will continue to do so throughout treatment.    All in all it took 30 minutes for the explanation from the techs and then the process. I was told that tomorrow there will be no photos taken but will go straight to the treatment.   I was very relieved. 

I was able to drive myself home with no problems.  I live only 5 minutes from the clinic.  I may continue to do this till I feel too weak to do so. 

Taken when I finished the procedure.

Another photo of an Elekta Linear Accelerator machine. 

SIX WEEKS SINCE PET SCAN

Delivered some paperwork to the Medicaid office at the hospital today.  They wanted to see my receipts for all medical visits, procedures, and meds.  They also requested bank statements from the last three months as well as my 1099 Form.   Now just have to wait for a phone call from my case worker to see if I will get some financial assistance.

On my way out I stopped at the Cancer Center and spoke with Sarah, the Financial Officer, who was working the front desk today.  I asked if she could tell me when I will be scheduled for my first treatment.  She checked my files and said that my Humana Insurance approved my treatment plan about 7 days after it was submitted.  So it was approved 7 days ago.  Wish I knew what the hold up is.  They are going to wait so long that my PET Scan (taken 6 weeks ago) will no longer be up to date and changes are happening in my throat which scares me.  I hope their measurements are still accurate.

MAKING OF THE DREADED MASK

My friend Carolyn transported me to the Cancer Center and went to all the appointments I had prior to the procedure.  Lots of paperwork and information given by many staff members.  I was pleased to learn that I may qualify for financial assistance.  Completed the forms and will know something in a week or so.  My out of pocket cost for each treatment will be $50 -  $1750 for the 7 weeks of treatment.

So, yesterday was the day of the mask.  I was well prepared for what was to come.  My best friend Xanax was taking good care of me and I was very pleased at how well I responded to the procedure.  The technicians were friendly and talked me through the whole process which helped to put me at ease.  Carolyn stayed in an outer room where she could observe through a glass wall.

Once the mask was molded to my head and shoulders I was placed in the CAT Scan machine in order to take measurements.  This went by quickly and I didn't panic.  I've had several CAT Scans so the machine is very familiar to me.

As the warm, wet plastic screen was being placed on my face my eyes were open.  I wanted to see what it looked like.  I really thought that I would need to keep my eyes closed to reduce the anxiety.  However, I opened my eyes several times during the process.  My eyelashes touched the screen and I was not able to completely open my eyes.   At one point I felt that the mask was too tight around my neck and I had trouble breathing.  After this was adjusted I felt fine.  

I did not get to see the Elekta Infinity Linear Accelerator on this day.  We will meet at my next visit in about a week for a practice run then my first treatment out of 35. 

We went to the hospital food court and got sandwiches then returned home.  I was thankful that I didn't have to drive as I was not able to walk in a straight line.  I felt a little weak, drugged, and extremely relieved that it was over.  I also felt  some pride in myself for not having any problems with high anxiety while the mask was being molded to my face.

I think one of the reasons I was calm was because one of the staff members explained that I was not going to be bolted to the table and indeed would be able to sit up.  The mask is snapped to the head rest which is snapped to the table.  Once I heard this, I felt a great deal of relief.

So now I just have to wait for the Radiation Oncologist to check the measurements and approve the readings and then I will receive a phone call telling me when to go back for the treatment.  It should be in about a week.

Once I got home I slept for about 5 hours.  My neighbor Carolyn brought me some medical supplies which now cover a large portion of my kitchen counter and which I am grateful for.  Lots of lotions and creams for skin care that I am going to need.  I still have many other supplies to get but there is time for that.

RADIATION MASK FITTING APPOINTMENT POSTPONED AGAIN

The Cancer Center called this morning to inform me that the Radiation machine will be down for maintenance this Friday.  They rescheduled me for next Tuesday the 13th at 12:15. This makes about 5 times this procedure has been postponed for one reason or another by me or by the Center.  Is this an omen??

I can surely use the time for healing from the PEG tube surgery performed 8 days ago and which is still causing me painful muscle spasms.  So now I have 4 more days to recover.  Still taking pain meds and do get relief for about 4 or 5 hours at a time.  Yesterday was a good day and I went up to 6 hours before having to take another dose at 5:00am this morning.  I try to go longer each time.  If I remain still on the sofa I can go a little longer during the night but by morning the pain wakes me up.  I realize now that I heal a whole lot slower than most.  I guess the diabetes has a lot to do with it.    

I am in the middle of a dog sitting job and have to be real careful that the dog does not jump up on the sofa and hit my belly.  He is such a cute and playful little Shih Tzu and it saddens me that I can't play with him like I used to.  He is no trouble and sleeps all night long with me on the sofa.  I surround myself with pillows so he can't get to my belly.  I'm going to miss him when I can no longer dog sit.  In fact, he just may be my last sitting job.

STRONGER PAIN MEDS NEEDED

Called my Gastro doctor today to ask for stronger pain meds.  They said I had to go to the office to pick up the script.  Sure wish they would have called it in to my pharmacy.  I was not up to walking all that much today.  Then went to pick it up and bought a few groceries at the same time.  Was in pain the whole time.

I was taking Hydrocodone/acetaminophen 7.5-325mg tabs every 6 hours - but the pain would return at the four hour mark.  Now taking Hydrocodone/acetaminophen 10-325mg tabs every 6 hours.  Helps a lot with the spasms.  Took a nice long nap this afternoon.  However, at the 6th hour mark the pain is back full force.  When will it ever end?

LEGAL MATTERS TAKEN CARE OF

Called the Cancer Center this morning and cancelled my radiation mask fitting from Tuesday to Friday.  That gives me 3 more days to heal from the PEG tube surgery. 

My son drove in from Baton Rouge today to take care of some legal affairs.  We went to Capital One Bank and had his name added to my checking account.  Also put in a "Payable Upon Death" clause on my CD accounts.  Then went to the attorney's office to have him notarize two documents - A Durable Power of Attorney and a Medical Power of Attorney.   We did not go to Synergy Bank where I have another checking account.  Ran out of time so maybe we'll do that on his next visit.  I had booked a dog sitting job for 1:00pm but called to say I was running late and for her to bring the dog at 3:00 instead.  

We then went to lunch at Cicily's and I had my usual spinach pizza and a piece of baked chicken.  Also had a little banana pudding.

Once the dog was dropped off, my son and I sat down and relaxed and discussed all matters in depth.  I showed him around the house to point out all the things that needed to be fixed.  Showed him what I considered to be valuable and things that had sentimental value.  Let him read my will and discussed what I wanted done.  So now that is all out of the way and I feel a great sense of accomplishment.  He left around 6:00pm and I was sad to see him go.

Once this dog sitting job is done, I will no longer book any future jobs.  It's time to get my mind clear and start doing relaxation exercises.  I need to find a spot in my mind to go to when I'm anxious.  This takes practice.  Meditation is not easy to do without training.  I'm hoping to use these next few weeks to learn how to center myself.  This is going to be a big help when I'm under the radiation mask and getting fried.

At one time, a long time ago, I was very much into hypnosis.  It took weeks to learn how to "go down to level" but I could do it easily at the end of training.  I'm hoping to be able to do it once again during treatment.

I have had continued muscle spasms today.  In fact, I've had more today than any day before.  Maybe because I was moving more than usual.  In and out of my son's car - which sits low to the ground - was very painful.  Also sitting and waiting at the bank was hard to do.

This morning I cleaned the wound and dressed it.  This afternoon I flushed out the tube which had some debris in it.  It is very sore in this area and I freak out each time I have to deal with it.

The pain pills are not working as well as they were in the past.  I'll call the Gastro doctor tomorrow and ask for something stronger.  Being in constant pain is exhausting.  I'm now going to the sofa and try to relax my stomach muscles.  It's too late for a nap so I'll just watch a movie and remain still.

MUSCLE SPASMS ARE PAINFUL

Slept better last night.  Getting used to sleeping on my back.  Took pain meds at 5:00am when pain woke me up.  The pain is in the left side muscle not around the stoma.  If it weren't for that muscle pain I would feel great.

I wanted to take a bath this morning but decided against it.  Instead I flushed the stoma, cleaned around the plug, dried it, put antibacterial ointment around the PEG, and taped fresh gauze under the plastic plug.  Washed my hair in the sink and took a sponge bath so as not to get the gauze wet.  Feel much better.

Took another half of a pain pill this morning around 10:00am as I was having lots of spasms.  Also took more stool softeners.  It has been 3 days without a bowel movement.  Took a total of 8 softeners in 3 days before they started to work.  So relieved that I had my first movement since surgery.

My brother came by for a visit and played with the dogs for awhile.  They really miss having someone to pay attention to them.  I have been spending a lot of time on the sofa trying to keep still to ease the pain.  I had to cancel two dog sitting jobs for this month and next month.  Will still keep this next one who will be coming on Monday afternoon and staying for 6 nights.

Just ordered more gauze and syringes from Amazon.

FIRST PEG CLEANING

Had my PEG tube surgery two days ago and needed to clean it today. Wasn't sure if I was to remove the gauze that is under the plastic plug or not. I was not given specific instructions on how to clean it. 

I removed the tape and the gauze, and there was some bleeding. I used soap and water to clean the area but did not get very far under the plastic plug covering. Rinsed and dried and put some antibiotic cream all around the plug and managed to get some under it as well. Sure wish I could have gotten someone at the clinic to do the first cleaning in order for me to see how it is done. Now I'm scared that due to the bleeding I may get an infection. And of course it is the weekend and can't get my team on the phone.

Finally I decided to call my Gastro doctor.  Told him about the bleeding and also about the extreme painful spasms I feel on the left side of my abdomen away from the stoma.  He said that was muscle spasms and not to worry.  Because the bleeding has stopped he said not to clean it again for a day or so.   I felt better after talking to him and took some pain meds and will now try to take a nap on the sofa and relax that stomach muscle.  I hope I didn't make things worse by causing the stoma to bleed.  This is so upsetting.

PEG TUBE SURGERY

Had the PEG tube surgery yesterday.  My neighbor Evelyn took me to the Outpatient Pavilion.  I was taken in right away.  Put a hospital gown on but could keep my pants and socks on.  IV started and then waited my turn.  I was the second one in line for the procedure.  About 30 minutes later I was taken into the operating room.  The anesthesiologist administered the wonderful sleeping drug and I was out.  Woke up feeling great and relieved that it was over.  

My brother came by and talked to us about the procedure.  Then I had a nice surprise.  An old friend - Ann - that I had not seen in years came into the room.   She is a nurse and working at this hospital.  We chatted for awhile and I was so happy to see her.

Then it was time to get dressed and I was wheeled out to Evelyn's truck and taken home.  Evelyn went to get my pain meds at the pharmacy and another friend Sylvia came over to spend the afternoon and the night with me.  I was in a good bit of pain and was glad to have all of the help I was getting.  Took the pain meds which helped for about 4 hours but was not supposed to take them but every 6 hours.  Drank some beef broth and later had a popsicle.  Drank a lot of coke.

That night I went upstairs to sleep in my bed and had a really hard time getting into a position that didn't hurt.  Took pain meds during the night and then slept a few hours before the pain woke me up again.

This morning I woke and looked at my tube which had some brown liquid in it.  This really upset me and I called the clinic.  They said that this was nothing to worry about and to flush it.  I am to let them know if it continues or worsens.  

I called my friend Evelyn to come over and help me with the flushing.  I couldn't remember what they had told me to do for this procedure.  Evelyn was my second set of ears and reminded me of how to pinch the tube, open the large cap, then push the plunger of water into the tube.  It was hard for me to do this with only two hands but hope I will get better at it as time goes by.

Then I took a nap without eating any breakfast.  Woke up around lunch time and ate some potatoes and a small piece of meat.

Spent some time online learning how to clean the area.  I am to wait 3 days before bathing and am not to get the area under water.  I will wash it, rinse, then pat dry and put some antibiotic ointment on it and place a gauze pad over the area.  I will be doing this tomorrow.   Also ordered a band that fits around my body that will hold the tubing in place.  It should be here in a few days.  I'll also need some more gauze pads.  

This is a little freaky.  Having to do this myself and alone is not going to be easy for me.