Wednesday, February 29, 2012

CT scan results

OK, here's what I know.  Ron's report was good but left us with areas of concern.  The pleural based nodule in the left lung has previously measured 9 mm and is now 1.1cm.  There is a new irregular nodule in the right lung.  In addition there is a slight bulging of the outer cortex on the right kidney.  They said it had been present on previous exams but now appears slightly more prominent.  Now, none of this really tells us anything but the mention of Ron's only remaining kidney really shook him up.  He wanted to know what it all means.  The doctor explained that if it is cancer the surgeon would try to remove the cancerous section of the kidney and save as much as possible.  If the kidney cannot be saved then of course Ron would be on dialysis.  In some cases they do a cadaver kidney transplant.  But there is concern about having to suppress the immune system.    So, really it is wait three more months and look again.

I was a little surprised to see Ron react the way he did.  He was immediately angry.  I don't know why it surprised me but it did.  I don't think he has ever even entertained the idea that this cancer could spread to his other kidney.  But I think about all possible scenarios.  I just have to give him space to deal with things in his own way.

Tuesday, February 28, 2012

I'm on a quest to find a new office chair.  I'm being plagued by back and leg pain.  I spend so much time sitting at a desk that I know I need a better chair.  It's just that there are so many to chose from but I think you definitely get what you pay for.  As a state agency we are limited to where and what we can purchase.  I'm actually considering buying the chair myself just so I can get what I need.  So far I'm up to $879.00 for a Herman Miller.  The reviews are so far the best I've found but I can't find a place that sells them so I could just go and sit in one.

Mike is doing really great.  The phone calls are minimal.  He's really thinking so much clearer.  The only problem he's having right now is occasional problems with his eyes.  They will suddenly start watering and even look swollen.  He says they burn and he can barely open them.  It usually lasts for about 30 minutes and then clears up.  I guess this will just be an ongoing issue he has to learn to cope with and he's really doing much better with it.  

Ron had his CT scan yesterday and we get the results tomorrow.  I've been feeling so punk myself I haven't thought much about anything other than how rotten I feel.  We get the results of his test tomorrow.  Everything in our lives is regulated by his 3 month tests.  We want to widen the driveway but we won't commit until we get the results of tomorrow's test.  I'm scared to spend any money for fear we will need it to fight cancer.  I try not to let cancer rule everything we do but it is hard at times.  I want to be prepared without "expecting" the worst.  Hard to do!

My best friend learned yesterday that she is going to be a grandmother.  I'm so happy for her.  I can only imagine how different my life would be if I had been lucky enough to be someone's grandmother.  It is a role I think I would have loved.  I always imagined myself in that role. I think because I had such wonderful role models.  My mother absolutely excelled in the role as a grandmother.  My children adored her and she played a huge role in their lives.  I always wanted to be like my mother both as a mother and as a grandmother.  But we don't always control what plays out in our lives.  

Monday, February 27, 2012

Check it Out

The above link is to a blog being written by our speech therapy director.  She is on a trip to Romania with Global Volunteers.  She is documenting her trip and what she will be doing in Romania during her stay.  

Wednesday, February 22, 2012

Swimming upstream

Well, I left my house at 6:45 am and drove an hour to the clinic.  Didn't get to see the doctor because she was home with  a sick child.  I had to reschedule appointment and that will be March 27th.  Oh well....even doctors have families.  They tried to call but I had already left the house.  Now I could call my PMP and schedule an appointment but that would take at least 2 weeks plus a $50.00 co-pay and probably a bunch of out-of-pocket expenses if she runs any tests.  Or...wait until March 27th and get it all for nothing thanks to the Indian Nation Health Services.   Hmmmmmmmmm I'll wait!

A friend of mine sent me another email about the healthcare system in the UK and how people are not getting care because they have to wait too long.  He said he'd rather go broke in America from healthcare costs than die in the UK from no care.  I said, "Don't worry, you will get to do both."  

As more and more providers require payment "before" treatment will be given there will be fewer people able to afford treatment even if they have health insurance.  For example, we have to pay for Ron's CT scans up front and then wait for reimbursement from the insurance company.  We are fortunate we have the money to do that.  What if we didn't?   It's $1,300 every 3 months and sometimes we don't receive reimbursement before the next test is due.  If I didn't get my healthcare for free we would really be up a creek without a paddle.

Tuesday, February 21, 2012

I need a new deal

Tomorrow I see the doctor and I have a long list of complaints.  I almost don't know where to start.  Hopefully I can get to the bottom of why I'm feeling so yuk.

My son-in-law has been attending a conference in San Antonio the past few days and had the pleasure of getting to know Anne Roosevelt, grand daughter of FDR and Eleanor.  FDR died 4 years before she was born but she knew her grandmother for 13 years.  She and Chris hit it off and he and Jamie have been invited to Maine where Ms. Roosevelt is currently living.  She offered also to give them a personal tour of the white house if they would like to go to Washington.  WOW that sounds so interesting to me.  I always said if I could have lunch with anyone (dead or alive) it would be Eleanor Roosevelt and Helen Keller.

Things are still progressing with Mike.  He sounds good and other than being tired he seems to be doing well.  I don't know what to do with myself these days.  No frantic phone calls 40 times a day.  I have way too much time to think about how awful I feel.  


Friday, February 17, 2012

A friend sent me an email the other day and a video about getting older.  The woman said she realized she was getting old when she tried to brush a hair off her shirt and realized it was attached to her chin. She said the thing about getting old is that we don't get to practice first.  Well, I'm with her.  This stuff just sort of sneaks up on you.  Every step I take reminds me that I'm on my way.  So far it is still a journey worth taking.

Mike's psych. appointment went well yesterday.  Dr. T. told him he thought he should wait awhile before getting a dog.  He told Mike he needs to learn the difference between being lonely and just being alone.  He was afraid Mike is sleeping too much to avoid loneliness and that he needs to learn to get comfortable with being alone.  So we are going to shoot for Mike's birthday in June.  It gives him something to work toward.  There were no med. changes yesterday and he doesn't have to go back for a month.  That worried Mike but he was assured that if he has a problem he can call and talk to Dr. T.

Thursday, February 16, 2012

Just call me wheezer!

I've been sick now for a couple of months.  Long enough that my husband is getting a little distressed.  It seems that my constant wheezing is giving him cause for concern.  He told me this morning that I'm wheezing so loud at night it wakes him up and he starts thinking I have pneumonia.  

I've always had a few environmental allergies that cause me to wheeze and cough.  Usually it is dust (which is why I now have all wood floors) but I'm not sure what's causing the problem now.  I get so out of breath just walking down the hospital hall.  So I'm ready to see the doctor.  I just don't have the time to be sick.

It's ironic that the minute things begin to calm down with Mike that's when I start feeling punk.  Guess I just didn't have time before now.  

Mike's seeing his psychiatrist this morning.  I had a 7am meeting so I wasn't able to go with him.  I believe he will actually meet with the doctor alone this time.  I think he'll be able to handle it just fine.  He's sounding more and more like his old self.  I don't want to get too optimistic but I've really seen a change this past week.  He's much calmer and the anxiety has really lessened.  I finally feel like I can breathe.......well almost!

Wednesday, February 15, 2012

Truth be told

Yesterday I went to Walmart on my way home from work.  It was about 5:15 or so and the first thing I saw when I walked in was a line-up in front of the greeting card section.  They were all men.  Each looking a bit perplexed as they perused the valentines trying to pick one for a wife or sweetheart.  I really got tickled.  Most of them had either a single rose in one hand or various stuffed animals.  The one thing they all had in common was a very pained look on their face.  There were more men there then at the recruiting station the day after the Vietnam (draft) lottery was held.

I ran into a young newlywed male I work with and he was carrying a lone plant and a card.  I laughed at him and he explained that he had to wait until the last minute or his wife would find any surprise he might have purchased.  I told him that I bought Ron's gift a month ago and he didn't find it.  The young man then put me in my place when he answered, "Yeah, but we don't look."

Tuesday, February 14, 2012

Happy Valentine's Day

Happy Valentine's Day!

I gave Ron his valentine and gift this morning.  He told me he was trying to think of something for me and he panicked and didn't get anything.  I got so tickled because this is a result of a Christmas about 5 years ago.  He got me perfume that gave me hives, a choker of pink pearls that really did choke me. (Plus they looked like they belonged to Thurston Howell III's wife Lovey.................)need I say more? and a doll case that was made for King Kong and my doll is more a Thumbalina.  Nothing that year was right.  It ended with me looking at him and asking,  "Have you ever looked at me?  Do you know me at all?" 

Poor Guy....I've made him gun shy.

Mike showed further signs of improvement last night when he told me he thinks he should talk to his doctor about getting a dog.  He said maybe he's not quite ready for that level of responsibility.  I told him that was good thinking and showed he is getting his impulsiveness under control.  Maybe getting a dog is a goal he can work towards.  

Monday, February 13, 2012

Snow flakes and chihuhuas

We had a good weekend.  Mike was doing well.  He came over Saturday to our house and watched a basketball game.  I fixed him pork chops which he seemed to have thoroughly enjoyed.  His choking phobia seems to have subsided and he's eating so much better now.  He asked me if he could get a dog.  My first reaction was no because I thought "Oh my gosh, one more thing for him to get anxious over" but then I softened and talked it over with Ron.  It might do Mike a world of good to have the company and something to think about other than himself.  He's always had a dog up until a year before our mother died.  I guess if it doesn't work out Ron and I can take the dog.  Soooooo we're going to start scouting for a rescue Chihuahua.  It won't require grooming and Mike had one when he was a kid.  Hope I know what I'm getting into here.

We celebrated Ron's birthday Saturday night.  He wanted a steak dinner with onion rings so we all went to Outback.  Then Ron and I and my daughters went to the movie, "The Woman in Black."  It was very little dialogue but a lot of ghosts jumping out and scaring the bejeebers out of you.  Not my kind of movie but I loved the company.

We woke up to snow this morning.  The streets are OK but a pretty blanket of snow covers the yards.  I was reminded just how spoiled I've become in a mere 9 months.  My sweet husband was out first thing clearing the snow from my car.  I couldn't help but wonder how did I get so helpless?  I've been so darn independent for so long but yet I have no problem relinquishing to the chivalry of my husband.  It never goes unnoticed nor unappreciated.  He makes me feel so taken care of and cared about.  It's the million little things like carrying in the groceries or the #1 reason I know I'm spoiled rotten...........he takes my car and fills it up with gas.  Before I even know it needs any.  No one has ever done that for me.  If the time comes that I'm on my own again I hope I won't have forgotten how to be independent.  It scares me a little.


Friday, February 10, 2012

I'm finding out these days that I don't have much to write about.  My life is so consumed with taking care of my brother that I don't have much time to just sit and reflect on anything.  So bare with me....I will probably just write when I have something new to say.  Right now I feel I'm just a broken record.

Tuesday, February 7, 2012

The things we remember.

Because I've been under the weather I haven't been able to get out and get a haircut for awhile.  I now have this unruly mess on my head that I found myself teasing this morning to try to give it some body.  You know the old ratting comb?  I immediately had flashbacks to junior high.  I remember the girls coming in the gym first thing before class started.  It was actually a huge auditorium where we gathered before school.  We segregated ourselves immediately according to social class.  The cool kids down in front, the socially awkward but not totally geeked somewhere in the middle, the total nerds further back and the hoods at the very back.

The cool girls would always get out their combs and start teasing each others hair.  The higher the better!!!!!!  Oh my, what confidence it took to allow someone to rat your hair like that in front of everyone.  Confidence I did not have.  I wasn't a total nerd but I was somewhere in the middle.  Definitely not on the front row!  I aspired to the belief that if I just slipped in no one would notice me. I definitely didn't want to draw attention to myself.

Transferring to junior high school was not an easy transition for me.  I was shy in grammar school.  I had the same best friend since 2nd grade and she moved out of state one week before the big move to junior high.  My mother was still forcing me to wear corrective shoes and I couldn't have felt more out of place.  CAN YOU SAY AWKWARD?  

So anyway, that was a pleasant memory this morning!  I ramble.....

Monday, February 6, 2012

Forgive & Forget

Well, if I ever doubted that my husband loves me (which I didn't) I really put him to the test over the weekend.  I was an absolute hacking, coughing, red nosed slug all weekend.  I finally got the energy to shower on Sunday and believe me I was in need.  In spite of my overall hag appearance this lovely man waited on me hand and foot.  He did the grocery shopping.  Looked after my brother and still managed to tell me I was pretty!  OMG Love IS Blind for sure! 

I cam back to work this morning but I'm not sure I will make it the whole day.  I'll just have to wait and see how it goes.

Mike is still doing well.  This improvement couldn't have come at a better time.   

Ron and I have been having an ongoing discussion on the subject of forgiveness.  Ron says that he forgives but doesn't forget.  A sentiment shared by a lot of people.  But the question is does that really constitute forgiveness?   We've had quite a discussion on the subject.  What are your thoughts?

Saturday, February 4, 2012

Death and Taxes

Two days in bed and I'm feeling a little better.  I'm still coughing and congested but I feel better than I did Thursday. 

Mike seems to be doing well on his new medication.  He at least hasn't called me 20 times a day but he also knows I've been sick so I know he's trying to let me rest.  Ron spent the whole day with him today.  There was lots of basketball to watch on tv.

Ron  and I have been living together a year now.  I can't believe it.  Our first anniversary will be in 3 months.  Where did the time go?  We've been so consumed with taking care of Mike that the time has flown by.  If we are able to get Mike settled down and not so dependent on us maybe we can take a short trip this spring.  I sure hope so. 

I guess we will start preparing our taxes tomorrow.  We have to see whether we will do better filing married and separate or married and jointly.  This is all new stuff for me.  I've never had enough deductions to file a long form but with all Ron's medical bills we may be able to this year.  I can't believe you have to owe money to save money on taxes but that's how it works.

Oklahoma will probably do away with state income tax this legislative session.  I'm not in favor of it because I know that it will be recooperated somehow and it will probably cost me a lot more than income tax did.  They estimate it will cost each taxpayer an additional $150.00/month if you have an income of $50,000 or less.  Now what is fair about that?  Just like the federal government, those that can least afford it end up with the greatest burden.  I can't believe Oklahoman's are so dumb to think the governor is doing them a favor!  It's hard being a liberal in a conservative state!

Thursday, February 2, 2012

I believe in miracles......................

Well, life is settling down.  Mike has his new med and we will see how it works.  I read the drug information on it and thought if the disease doesn't get you the cure surely will.  The doctor added Lorazepam to the drug cocktail.  He'll take it 3 times a day instead of his prn medication for anxiety.  If it makes him too sleepy we cut the noon dose.  The literature says not to take it for more than 4 months so I don't know what the plan is for this drug.  Mike didn't call me last night (that's a first) so that was good.  Ron did talk to him so I know he was OK.  Mike now takes 10 meds in the am, 2 at noon, 2 in the evening and 9 at bedtime.  Hopefully we will have a calmer week.

My cough and respiratory (pardon me) crap is back.  I'll get to the doctor if I ever get a chance.  I hated to come to work this morning but I have so much to do I just can't take off.  

Mike keeps me so busy I don't have time to worry about Ron.  I don't know if that's good or bad.  I don't want something to slip up on us and I find myself unprepared.  It's so easy to just forget that he has cancer.  He's feeling good.  I find myself thinking he's beat the odds.  It's easy to think that way until you see the oncologist who always has to remind us that "Ron's condition is grave".  What does that mean, grave?  Is that a really poor play on words?  Why does she insist on bursting our bubble?  She tells us that everything is stable and we get so excited and then she hits us with, "Now, you have to remember, Ron's condition is grave."  She says she doesn't want us to have false hope.  Why not?  Why not any kind of hope?  When you stop having hope you just stop!  I believe in miracles....why if I didn't I couldn't do what I do every day.  I see miracles every where I look.  To me Ron is a walking miracle.  Two major surgeries that he sailed through with little pain.  That's a miracle.  Every day he feels good and is free of pain or discomfort.  That's a miracle.  So........why not a miracle cure?  It could happen!

Wednesday, February 1, 2012

OK, I had to take off work this morning and go back to Mike's doctor.  It seems there was a mix up at the pharmacy and they didn't fill the new prescription.  Mike was freaking out so it was easier to just get it taken care of myself.  It is a 1 1/2 hour round trip which isn't that bad but it just takes time away from work.  But all is well for the moment.

I am getting that cough and cold back I had about a month ago.  My daughter and her husband both have pneumonia right now.  We are a mess.