And it's Monday

I spend most of my time trying to keep my calendar up-to-date.  Just keeping track of doctor appointments for myself and my brother is enough to make my head spin.  Right now I have 3 appointments with 3 different specialists.  

Mike has an appointment to get a heart monitor that he will wear for a couple of days.  This should be an interesting experiment.  It's just another thing to throw his routine out of wack.  I hope the monitor isn't too cumbersome or he won't wear it.  I also hope he doesn't become obsessed by it either.  There is never a happy balance.

I purchased a small upright freezer.  I plan to use it to store prepared meals for Mike.  The bottom freezer in my refrigerator just isn't big enough and I'm always running out of space.  I really hope the additional freezer space helps.

After doing some further research on the Flexogenix clinic and patient results I've decided not to give it a try.  From all the reviews I was able to find the injections do not relieve pain as frequently or to the extent they suggested.  I think I'll just stick with my orthopedist.  I'm always skeptical when things sound too good to be true because most often they are just that, too good to be true.

We've been having some wonderful spring weather and though everyone is biting at the bit to plant flowers and work in the yard I just know we haven't seen the last cold blast.  Sure enough I just heard we are getting a freeze this weekend. Glad I didn't get sucked in my Oklahoma's tricky weather.

Soon spring will be sprung!
 

More doctors

Monday and Tuesday were busy days.  I went to the Flexogenix clinic on Monday to have a consultation about my knee.  After some x-rays and an ultrasound it was confirmed my right knee is bone-on-bone.  I expected that bit of news.  What they offer are injections that help lubricate the knee and a custom fitted brace.  All this is supposed to delay the need for knee replacement but no one could tell me how long.  I left without making any commitment.  I want to see my orthopedic surgeon and get his opinion.

Tuesday I saw the lung doctor.  He has ordered another lung wash and a biopsy.  I go in for the procedure next Tuesday.  He also made a referral to an infectious disease doctor.  Discussed IV antibiotics through a port and an immunologist.  I'm still seeing the gastric doctor on the 20th.  I left his office feeling a bit overwhelmed yesterday but I've got my head straightened out today.

Tomorrow I'm going to with my daughter's to their lake house.  We're just staying the day but it will be a nice break from everything. 

I have so many projects I'd like to complete but there just hasn't been time for anything but doctors lately.  I finally received the sofa I purchased at the end of December.  Since it was a custom order it took forever to get it.  Of course every time you get something new it just makes you notice everything else that needs to be updated.  It never ends.

Luck of the Irish

Hope the sun is shining wherever you are.  We are expecting a couple of days of sunshine followed by 5 days of rain.  We have all kinds of outdoor projects to complete but our two days of sun are interrupted by more doctor appointments.  I'm going to a clinic today to see about a treatment for knee pain that is supposed to be an alternative to knee replacement.  It seems that the minute I knew I didn't have cancer my knee decided to go south.  I've been hobbling around for the past two days.  I do not want surgery because I'm afraid my lung condition could cause complications, mainly pneumonia.  So I want to put it off as long as possible.

Tomorrow I go back to see the lung specialist.  I guess he's going to go over the results of the PET scan again.  I have his referral to the gastrointerologist. 

Mike is still working on his independence.  He's working hard to limit his phone calls and so far so good.  Ron kept him busy all weekend attending baseball games so I guess we really haven't challenged him.

My daughter hosted a St. Patrick's celebration to celebrate my extremely good luck!  We had Irish stew, Bailey's brownies, Irish soda bread and another dish I can't recall the name of right now.  All the kids were there and Piper.  Jamie's in-laws are here from Alabama and we just had a great time.  I love my family and I'm so blessed!

Disney has a new version of Dumbo that will be out the end of the month.  I've never taken Piper to a movie but I'm going to see if her mom and dad will let me take her to see Dumbo.  I don't feel I've had much time with her lately.  She's changing every day.  The time goes too fast.

I hope my luck continues and we find the answer to my lung problem.  It would be wonderful to feel 100% again but I'm not complaining.  I know it could be worse.

In the blink of an eye

I don't know where to start but at the beginning.  I had the PT scan on Tuesday and everything went well except finding a vein which took 30 minutes and then realizing I had my shirt on inside out.  But besides those set backs there was nothing to it.

Yesterday I met with the oncologist fully expecting to hear what our next plan of treatment would be.  Instead while entering the exam room she was saying, "I think I have good news for you." Her next words were, "You do not have cancer."  At this point I was both elated and confused.  She explained that because of the bronchitis I have had for 3 years it has begun to affect the cells in my lung making them misshapen and "atypical".  They look like cancer cells but that are not cancerous.  That is why the pathologist interpreted them as cancer cells.  Her recommendation is that I have regular CAT scans and continue to be followed.  She said because of the prolonged infection I could develop cancer but it may never happen.  Just reason to stay vigilant.

Now don't get me wrong I was thrilled but my reaction was to cry.  Not for myself because I had come to terms with the idea of having cancer.  I wanted to cry because I realized how blessed I was but there were so many people who would not be hearing the good news I had just heard.  I guess I felt guilty.  I just couldn't grasp why I would be so lucky and others not.

I came home utterly exhausted and went to bed at 8:00 p.m. and slept straight through to 8:30 a.m.  More sleep than I've had since I can't remember when.  I'm still trying to interpret lessons I'm learning from all of this and trying to make sense of it all.  I've already been able to have a long talk with an old friend who has helped me a great deal.  It is just that we are never "finished" in our quest for understanding.  There is no end point in all of this.  This human experience is just one lesson after another.  Some we get and others may never even be recognized.  All I know is that I've got more to do.

Sometimes there is just too much shared information

I don't know if you would call it denial or what but I don't want to hear every cancer story or about someone's aunt Lizzy who had stage 4 lung cancer or where someone's uncle went for treatment.  I'm barely able to think from one moment to the next and feel pretty good that I've already picked an oncologist at all.  I haven't even gotten confirmation as to what type of cancer I have and really don't want my imagination taking me to places I have no business visiting.  It seems everyone wants to tell me where I need to go or that I need to eat this diet or use these essential oils or purchase a $700 water filter.  It's just too much information and it is honestly just going in one ear and out the other.  I'm truly just taking it one day at a time.

But....all that said.  I had dinner tonight with to former co-workers and it was very enjoyable.  Down side is it was over too fast.  The time just flew by and I was left longing for more time.  But all good things must come to an end.  Now I am preparing for tomorrow and my PET scan.  Nothing but water after 7 am tomorrow.  PET scan at 1:00 p.m.  I figure the prep will take 45 minutes to an hour and the scan will be around 2:00.  We should be back home by 3:30 at the latest.  Then Wednesday I will get the results and the plan for proceeding.

I'm going to listen to an audible book, "The Places That Scare You" by Pema Chodron.   I just downloaded it this evening.  I'm going to download a list of books to listen to while receiving treatment.  I think this will be the first.  Another one by the same author is "Being Mortal".  If anyone has any recommended reading they would care to share please do.

Satisfying Saturday

Had a lovely day in spite of the wind with my daughter Jamie.  We had lunch downtown and went to some vintage malls.  We each found some things we have been looking for to complete our farmhouse decorating themes.  Mike called me about 4 times while we were out.  He has had some paranoid idea that the police want to take him to jail.  I asked him why they would want to do that and he came up with some idea about when he worked with my dad in his pawn shop.  They sold guns and somehow Mike now thinks that is why they want to put him in jail.  I tried my best to explain and #1 my dad had a license to sell guns and it was 50 years ago and none of it has anything to do with Mike.  But that wasn't good enough..... he is obsessing about it and no amount of reasoning will shake him out of it.  Sure makes it hard to just enjoy doing anything.  Seems like I'm always balancing a phone on my shoulder talking him off a ledge.  If you ever saw the movie "Love Actually" you know just what I'm talking about.

I told Jamie about my lack of a bucket list and she asked if there wasn't somewhere I always wanted to visit.  The only place that came to mind was Astoria Oregon and she said, "Then you should go there."  I told her that I wouldn't want to go unless we could all go because I really don't enjoy things without them.  So after some further discussion I told her I'd always wanted to see a Broadway play in New York.  She suggested that she, her sister and I plan to go to Boston so I can meet my 20 + year pen pal and then ride the train to New York to see a Broadway play and fly back home from there.  Poor Ron would have to stay behind to take care of Mike.  I have to admit that a trip isn't something that I just have to do but I'd do it for the girls.  We have some memories attached to Boston because it is the only trip we ever took together.   They were still in college at the time and we had an absolutely wonderful time.  It would be nice to recreate that trip.  Jamie wants to plan the trip while I'm in treatment as something to look forward to when it is done.  I told her I also need time to recover and to grow some hair!

I also told her I having been thinking about Piper.  I don't want her to be scared of me if I lose my hair.  I suggested they talk with James and Miranda (Piper's parents) about how they think the best way of preparing Piper.  We even tossed around the idea of having her help shave my head when the time comes.  That way it won't be a shock to her.  Jamie suggested we get her a doctor kit so she can "help take care of me".  Since my girls are both early childhood educators I know they will research the best way to prepare a little one for such things.

For some reason I woke up this morning about 4:14 am and couldn't go back to sleep.  So it's been a long day and I plan to get to bed in a few.  I took an anxiety pill before I went to bed and slept hard until 4:14.  Unfortunately I didn't go to sleep until about 11:45.  So not much sleep in total.  
 
My anxiety comes in waves.  I'm fine for awhile and then this fear just comes waving over me.  I feel my insides shaking and then my hands start trembling.  I don't know from where it comes or when it's coming.  I just have to ride through the it.

One thing I know about life is that all things are temporary.  Life itself is temporary.  But somehow we humans have an unspoken sense of immortality.  We simply cannot imagine "Not Being".  It's a concept we can't possibly comprehend.  It speaks to our rather egocentric nature.  We wonder just how  the world could possibly function without us. But it will as it does with every human loss.  These are things I think about alone in the dark at 4:00 am.

Tomorrow I have to prepare my brother's meals for the week.  I usually do that on Saturday but I wanted to spend the day with Jamie today so I put it off.  I still have to go to the store before I get started on the meals.  Tomorrow will be busy with church and then meal prep.  I guess I'd better get to bed ASAP.

Putting my ducks in a row!

There is a certain amount of business to tend to when you are faced with the possibility of death.  I am a person who needs to exercise control over the things I can.

Today we started the process of getting our ducks in a row.  We met with an attorney to see what we need to do to ensure my brother is provided for in the event this all goes South.  It was decided that Ron and I need to each have separate wills.  It was also discussed the possibility of putting the condo in a trust (to the tune of $2,000)  that one I'm going to discuss with my lawyer cousin.  With all the possible anticipated medical bills we are about to incur $2,000 is a lot to spend right now.  If we don't do a trust we will simply do a transfer upon death for the condo the same as I have done for my home.  Anyway it gave us some things to think about.

Yesterday the oncologist called and moved my appointment up to Wednesday the 13th.  She will have the results of the PET scan so maybe we will get some answers.  What I'm anticipating is that she will want a biopsy.  My lung doctor has already anticipated that as well so hopefully there will be no delay in getting it done.  

My daughter Julie drew this picture for me.  I put it right next to my bed.  She is also having T-shirts made with this on it.  I plan to wear one to my treatments.  I need lots of reminders.  So far 60 of our friends have asked to purchase a t-shirt as well.  Julie originally wanted it to say, "I'm tougher than cancer."  I told her I prefer a universal message that could apply to anyone.  She said she may put the lung cancer ribbon on the girl's dress instead which is ok with me.

Something occurred to me today.  I was thinking that the end of life comes when you have no more lessons to learn.  Then I realized that death is the final lesson.  It is the one lesson we will all have to face and learn from eventually.  I also have always wondered that if given the choice of knowing that the predicted time of my death would I want to know? I still don't know the answer to that question.  Would knowing change anything for me?  I'm not sure.  I don't have a bucket list to fulfill.  I don't think I'd do anything different than I'm doing now.  I learned along time ago to tell those I love how I feel and I've done so every day.  I have left nothing unsaid.  I think I would just continue to live just as I am hoping that I would have time to say good-bye.

Riding the emotional roller coaster

I'm still riding the roller coaster of emotions.  The dips are coming less frequently but they still come.  I saw my primary care doctor yesterday and asked for something I could take for anxiety as needed just until I see the oncologist.  I'm sure she will address the problem then.

I was lucky enough to get a referral to Ron's oncologist and will see her on the 20th.  I will see the lung doctor on the 19th to get the results of the PET scan.  So everything is lining up pretty well.  I also found out that we will not have to make the hour long drive for treatment but we will be able to go to the Cancer center where my lung doctor is located.  That's only a 20 minute drive from here and we don't have to drive the interstate. 

The pulmonoligist called me on Monday to see how I'm doing.  He is still shocked by the pathology report and said part of him doesn't want to believe it.  I asked if nothing shows up from the PET scan would he still proceed for further confirmation.  I didn't want to just dismiss it.  He said yes, he would schedule a biopsy.  I wonder why we don't go straight to a biopsy but I'm sure that is a Medicare and insurance thing.  I think I am just anxious to get started doing whatever I need to do.  

Side note.  Ron and I came home this afternoon and our electricity had been shut off.  We assumed there was a power outage but found out that the electric company had shut it off.  Seems someone called the wrong number (us) and tried to schedule turning on the electricity I guess for a new account.  We didn't get the call and they didn't leave a message.  Because we didn't call them they cancel the request for power.  That was in November.  Because they didn't know we had power it didn't get caught until now.  So they shut if off.  What makes it really interesting is that I had continued to pay them every month even though I noticed I wasn't getting a paper bill anymore.  I have our electricity on a fixed amount so I knew what to pay and just kept paying it.  Anyway, they weren't quite sure how to handle the situation.  I would say the billing department needs a little more training.  They sure accepted payment for a canceled account without any problem.  But all ended well.  They had to give me a new account number and now I'm a new customer.  After paying the bill for this address for 50 years this September! Oh well!

Well, trying to continue living as usual when nothing is as usual is hard.  But I'm so lucky to have my daughters and Ron to support me through this.  I have no illusions of living forever but I'm just not ready to go just yet.  I'm a person who wants to know I've left nothing unfinished but now I wonder if we are ever finished. 

Feeling more normal

Now I totally understand what a support animal does.  Having Ellie these past few days has taught me something.  When she is in my lap or sleeping with me I feel calmer and more relaxed.  Petting her and all is well with the world.  She may even sense that I need her right now.  Either way it's a win, win.

Yesterday I spent the afternoon with my daughters shopping and having lunch.  It was just what I needed.  We didn't talk about cancer of treatments or anything.  We just enjoyed our time together.  

I finally get to buy little girl dresses.  Dillard'a had a huge sale and I bought Piper 3 outfits and a darling little blouse.  The girls and I took them to her after we finished shopping and she was as thrilled as a 3 year old who hasn't had a nap all day.  Maybe after a good night's sleep she will be more impressed. (ha ha)

Today I think my appetite is returning.  I can actually imagine eating.   The one thing is that I'm ready to get on with this fight.  I can't believe I have to wait 9 more days for the PET scan and then another week before I see the doctor.  I want to pass GO and go straight to the cancer center and see an oncologist.  But I'm sure they would order a PET scan as well and  at least we already have that in the works.

We have icy roads and sidewalks.  I will not be venturing out for anything today!

When the Big C comes to call!

Well, I have finally started to come down from shock and able to stop shaking long enough to type.  This past Tuesday I went in for another bronchoscopy to "wash" my lungs.  Just as last year everything was sent to the pathologist.  He also wanted a culture done as well.  It all went smoothly but not something I'd want to do every day.  Then on Thursday my doctor called to tell me I had a bacterial infection in my right lung that was a surprise to him.  He said it is one that is usually found in people with suppressed immune systems.  Then he said the pathologist had just called him to say cancer cells were found in the upper lobe of my left lung.  Also a shock to him as well as myself.  I had just had a CT scan two weeks ago and not only did it look good there was barely any evidence of bronchitis.  It was referred to as "mild" bronchitis.  But now cancer!

To say that my mind has been racing is putting it lightly.  Being that I'm a person who needs to plan for every possible scenario in life this scenario is one I don't know how to plan for or at least not yet.   Of course my first concern was my brother.  I don't want to tell him but don't know if it will be possible to hide it from him.  Either way it won't go well.  He could easily have a psychotic episode.  One side of me says do it now while I have the ability to make decisions and help him.  The other side of me isn't ready for it.  I'm terrified for him.

My older brother is now completely out of the picture.  About 2 months ago I received a letter from him telling me he is no longer a member of our family.  He accused me of talking bad about his wife.  It was strange and completely out of  nowhere.  He told me to not contact him in any way or he'd take legal action.  The last contact I've had is the Christmas card I sent in December.  I had tried to call him after his heart surgery.  I talked to his wife maybe twice and Ron took a wheelchair to them.  After that I called two or three times and left messages and no one ever returned my call.  That was last April.  I admit I stopped trying.  I also learned he sent the same letter to both of his daughters.

Fortunately he didn't cut contact off with Mike.  I haven't even told Mike anything about the letter.  Mike still calls his brother every day but usually has to leave a message.  Butch calls eventually but its taking longer and longer.  I'm afraid he may be cutting Mike off as well and that will shatter Mike.  Especially now when he learns about my cancer.  He will panic and worry that he will have no one.  He's always turned to our brother especially when he is frightened.  It's all very sad.

The next step in my journey is a PET scan March 12th.  See the doctor March 19th for the results and get his input as to where we go from here.  In the meantime I'm trying to go on as usual but I can say it is requiring a minute by minute decision to do so.  Control is a hard thing to lose.  Especially when you have always been the caregiver to others.  I take care of them not the other way around.  I'm still trying to take care of them first.  I want to take care of Mike, Ron and my daughters.  When I told the girls I just said I'm sorry over and over.  I'm sorry for the pain this is causing them.  I'm sorry that it could take me from them.  I'm just very sorry!