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Well, where to start. I am now 70 years old. A fact that I still haven't quite wrapped my brain around yet. My daughters hosted a birthday party for their old mom and it was great fun for old and young alike. The kids swam for hours, the younger crowd shared their dismay to see summer end. And the rest of us oldies just ate, stayed inside where it was cool and tried to figure out how we got so old so fast!
On Monday Mike had his pacemaker surgery and did great. He had to stay overnight in the hospital but was loving being the center of attention. He was discharged Tuesday morning with the restriction he is not to raise his left arm. They strapped his arm down as a reminder but we didn't feel comfortable leaving him on his own so he is staying with us. So far everything is going remarkably well.
I'd like to take this opportunity to say once more that I'm married to a saint! Ron has bathed my brother and helped him dress every day. A job he took on himself to preserve Mike's dignity. Also Mike has been so cooperative and pleasant that it's just worked out great. He has a follow-up with the heart doctor on Monday and we will evaluate the situation then. He may be with us the entire 4 weeks but it will all work out fine.
Over the past year Ron and I both gained weight. Today we recommitted to a healthier eating plan. I want to get the extra weight off so I'll be in a better position to have knee replacement surgery. I have a consultation August 22.
I drug out my sewing machine today and made new curtains for my daughter's classroom. She's decorating her class in a farmhouse theme and wanted buffalo check curtains. I haven't sewn in so long I couldn't even remember how to fill the bobbin. It's a new machine I had only used once about 4 years ago. Now I'm anxious to work on some other projects. Maybe a few Christmas projects.
I have managed to start my Christmas shopping. I think I've purchased 5 or 6 gifts so far and I know pretty much what I'm getting everyone this year. Just want to spread the money over the next 3 months. We still have to have the line replaced in our AC unit. Estimate was about $900. Not to mention the hit we took from the damaged carpet. The AC was patched up and freon added in the hope it would make it until the fall. However, we are having triple digit heat right now and I've got my fingers crossed the AC will make it.
Hope everyone is staying cool wherever you are. Oh, the heat made me think of a new bumper sticker. "If you voted for Trump, you better get used to the heat". That's my slam on climate change deniers!
Oh a final note. I'm still taking the cbd oil and lungs are continuing to improve. I had my first A1C taken yesterday since starting the oil and I was down from 7.1 to 6.0. That's a significant drop and I wasn't even eating as well as I should. I can't wait to see where it is after eating right!
Well, here we go again. Mike's pacemaker has been approved so we are just waiting to hear when the surgery is scheduled. We took him to the dermatologist Monday and now he has a suspected skin cancer on his back. Have to schedule surgery to remove it and get a biopsy. I'm still waiting to schedule my stomach procedure and colonoscopy. (Whew)
The carpet has been dried out, pad replaced and carpet reinstalled. So far to the tune of just over $500.00. I cleaned it myself and it looks pretty good. I'm going to wait to have it professionally cleaned because it appears the AC has decided to act up. Thank goodness it hasn't quit entirely but it isn't handling the 100+ weather we are having. It won't cool down past 76. Fortunately our HVAC guy is coming out today and praying it just needs freon. We've been taking the hits lately and we need a break!
We started moving the furniture back into our bedroom yesterday and hopefully we will finish it today. Slowly getting things back to normal.
I've been reading a few commentators on just what this presidency has done to the country and what the long term ramifications are projected to be and it isn't pretty. So many destructive behaviors have now become legitimized such as lying, bigotry, xenophobia to name a few. We have accepted this behavior from the most powerful position in the world. This is what has bothered me the most. Once people don't care about truth, honesty, decency in general, where do you go from there?
So much going on I can't keep up! Mike was scheduled to have the pacemaker put in tomorrow but it was canceled by the doctor on Tuesday but we didn't know about it until Friday. Confused? Just a tad!
Our bedroom carpet was ruined by a backed up drain. We are still in limbo about that. Have to move all the furniture out of our bedroom and store it while the flooring is tended to. We've had fans on the carpet but it is still damp because of the padding underneath.
I'm one of those people who has to have order to function. Sounds funny coming from me since for the most part my whole life is chaos. But I must have order in my surroundings to compensate for all the other things in my life of which I have no control. (Now that makes a little more sense I think)
So this upheaval of furniture and flooring is a REALLY big deal for me. I have to have a place for everything so that I don't start feeling overwhelmed. Unfortunately we do not have a garage or this would be much less disrupting. I think I'm going to look into renting one of those storage pods they drop on your driveway. We can put everything in it and leave my house intact so I don't lose my flipping mind. I know everyone around me would be happy! All of this has put me in a purging mood again. I'm ready to get rid of excess furniture and anything else I haven't used in the past two years. I go through these spells every time I feel like my life is out of control. (Which occurs quite regularly)
At these times I organize everything I can get my hands on. It just makes me feel peaceful. Anyone else a little compulsive or what strategies do you use for coping?
I saw the infectious disease doctor Tuesday. He didn't see anything he thought required treating. I told him I'm actually getting better but I didn't tell him I'm taking cbd oil. I'm playing "Don't ask, don't tell." I don't know why I'm hesitant to say anything I guess I'm afraid they won't like my "self treating" but hey, I was desperate.
Don't know where the time has gone but again life just gets in the way at times.
Mike had to wear a heart monitor for a couple of days and the result was that his heart rate drops significantly during the night and daytime hours. During the day it drops as low as 28. Hence he is scheduled for a pacemaker July 8th. He knows about it but not the date as of yet. We will keep that information from him until the 7th. Less time for him to become anxious. He's anxious enough just knowing about it. He imagines all kind of restrictions which are few. He can only raise his arms less than 90 degrees for a couple of weeks. That's it! But he thinks he can't shower among other imaginary restrictions. But hey, that's the way the ball rolls for now. The cardiologist said that otherwise he is in excellent health and could easily live another 20 years with a pacemaker.
Now you'd think my reaction to that news would be one of elation. But like so many caregivers the fear is always that a caregiver will not outlive their dependent. I hate to admit but a part of me thought why do this? Let him slip away one night in his sleep. But of course that was a fleeting thought brought about from constant worry about what his future looks like. So we will proceed!
Right after we saw the cardiologist Mike said, "I can just come live with you and Ron." I said "no". So hard to say that but I know it would never work out. My lifespan would be cut in half. He then said, "That's ok, Ron will just move in with me and take care of me." Again, I said "no". Then he asked if I resent him. I said, "Sometimes...I resent your illness. But I love you."
These conversations are so hard. I want to be honest with him while protecting him at the same time. Not always easy. The uncertainty of our healthcare system and lack of help for the aging, mental health and healthcare in general makes the future just unpredictable. I really am living my life one day at a time. I can't plan any further that the next minute.
I saw my oncologist yesterday and got the results of my recent CAT scan. Everything looked great. Great improvement. In fact so great I don't have to see her anymore since my lung doctor is following up with regular scans. I was very pleased. And the only change I have made in treatment is the cannabis oil. My lungs are so much clearer now it's amazing. My energy is increasing every day. I couldn't be happier.
Tuesday I get to pick up little miss at daycare and we are going to the museum to look at dinosaur bones. I think I'll take her for a hamburger afterwards. I can't wait. I enjoy the little stinker so much!
Ron is seeing a new neurologist this morning. He just hasn't been happy with his current medication and wants to see if this doctor will have any new suggestions.
Today is my brother Mike's 71st birthday. We took him out last night for a birthday dinner. He's doing good. One day at a time is what I tell him every day. But all in all he's doing well.
We actually had more rain last night. I don't think we will dry out in Oklahoma until August. We can just sit outside and watch the grass grow. Of course I know by the end of the summer we will be praying for rain so I'd better not complain.
Last week we were dog sitting Ellie's sister Winnie. It went pretty well but was a challenge with all the rain we've been having. My floors were horrible. Finally got everything clean yesterday.
Today I had another CT scan with contrast. Fortunately the IV was started on the first stick and no one had to go get an ultrasound machine to find a vein. I think all the water I've been drinking helped a lot....plumped up those veins. I see the oncologist on Thursday to get the results.
I still haven't gotten the results of the stomach biopsy but I'm sure if it had been bad someone would have called by now. I'm giving the office a call tomorrow though.
I must say that all this rain sure has made the flowers grow. Our backyard is really in bloom.
I had my favorite visitor over Saturday for a play date. She looked like she had grown a foot in just the past two weeks. She had us hopping for five hours playing catch in the backyard and blowing bubbles. She is one busy bee. I was glad I was feeling pretty good although Ron had to help keep her entertained because I couldn't keep up. Friday night we are taking her to see The Life of Pets II. I think I'm more excited to see it than Piper. I thought the first movie was darling.
For some reason I didn't sleep hardly at all last night. Maybe 3 hours total so I'm just exhausted tonight. I'm heading to bed.
I've been taking CBD oil now for about 6 weeks. I was put on a low and slow dosage plan. I've settled now at 13 drops (under the tongue) twice a day. I can't say I have experienced any miraculous cure of anything but I can say that I'm beginning to notice a decrease of some symptoms.
1. Mucus production is lower. It is easier to clear my lungs now than before I started.
2. Energy level is beginning to improve. Yesterday was one of the better days that I've had in quite a while.
3. I have a knee that is in need of a joint replacement. I'm walking better now after starting the oil.
One of the conditions that there has been reported improvement is anxiety. Since I don't really suffer from anxiety I can't weigh in on whether it helps.
I had just reached a place where I felt I had nothing to lose in trying it. I did some research before I decided on which one to try. I'm taking HempWorx because it is only one of a few that are actually inspected for purity. There are currently no government regulations on cbd oil and every Tom, Dick and Harry is setting up shop to sell it. I get it from a physician's assistant who became interested after taking it herself. She had a lung condition that had reduced her lung capacity by 75%. After 9 months she had improved it to 90%.
So I figured why not try it. I have been in constant contact with the PA during the whole process and she has guided me as to when to increase the dosage and when to back down. You are required to drink half your body weight in ounces of water per day. This has been good for me in general because I've never been too good about getting enough water.
I'll let you know what I experience as I go along.
Fatigue is my biggest problem lately. I get up and dressed about every other day now. I have enough energy to navigate what I need to do one day and then I need the next to recover. Yesterday I cooked my brother's weekly meals and today I recovered. I've made a note to talk to the doctor about this new development.
Ellie's sister is staying with us for a week. Ellie is having a hard time sharing Ron and I with her. She finally allowed Winnie to sit in our laps this evening but it took her all day to concede. She is definitely an only dog.
I forgot to mention I have a CT scan on the 11th and the the oncologist again on the 13th. I hope I have the results of the stomach biopsy by then. Still no word from them.
Two years ago my brother's identity was stolen. Someone used his social security number to order $2300 worth of I-phones over the telephone. They were delivered to my brother's old address and picked up by the thief. (Not a very good practice on T-Mobiles part) We sent them the police report but they continue to turn it over to collection agencies. I put a hold on Mike's credit so no one could open another account in his name but the collection agencies still call. Tomorrow I'm going to visit T-Mobile and tell them they are billing a schizophrenic and good luck with collecting. I'm getting sick of the bullying. Mike's not responsible for any debt according to the police. So I'm giving the last a final copy of the police report to them and I'll throw in some advice for free. STOP opening accounts over the phone...................... !!
Wow we have been busy. Lots of doctor appointments. Scheduled and then rescheduled procedures. The last lung wash and biopsy had to be canceled. My hand had started hurting the Friday before the procedure and by the time I got to the hospital on Monday it was really hurting. I had purchased a splint and had made an appointment with the hand specialist who removed thumb joints in my and 20 years ago. I couldn't get in for another week so I thought I would be able to get the biopsy done. But by the time I got in the operating room I just broke down in tears. The doctor said nope not doing this today but sent me straight to the ER. They exrayed my hand but didn't see anything. Put hand in a sling, called hand doctor and got an appointment for the next day. Thank goodness because by the time I got to see him my hand was 3 times normal size and red as a beet all the way to my shoulder. Pain was unbearable..... Turned out to be cellulitis. So I was on two antibiotics for 2 weeks and it took a month to recover.
So 2 weeks ago I had a lung wash and biopsy. Results were good. I also had an endoscopy and biopsy in my stomach. Don't have results because their computers are down. I see the infectious disease doctor in July.
The highlight of all this is that my childhood friend from Arizona came to visit along with her husband. It was a short stay but we had a good time. I was a bit under the weather because of the 2 procedures that week but I pushed through. I've reached the point where my stamina is low and I'm exhausted by 4:00 pm each day. Still coughing all day and wheezing. It just wears me out. My official diagnosis is COPD. Dr. D. is still trying to get it under control but Ron and I have decided that after all the tests and the appointment with Infection Disease if we don't have a new game plan we want to go to Denver to the Jewish Health Center. They are world re-known for the treatment of lung disease .
The new freezer has been a game changer for preparing my brother's meals. I've been able to make several entrees and freeze them plus purchase in greater quantities. It takes half the time to prepare the meals as in the past. The only problem is that with all the rain we've had the backyard was a swamp. Hard to get to the building. So Ron made me a paver path and it is GREAT! I love it!
Now no more muddy feet when it rains. All we need now is to put a cover over the path. ha ha way too expensive. I can carry an umbrella.
Mike is doing pretty good. He is having a birthday on the 14th. He'll be 71 years young as he says. His physical health is still great. Anxiety is up and down and he's as persistent as ever. My niece is now cleaning his condo every week as it just got to be too much for me. He enjoys having her company and its working out good for both of them.
Ron is now 6 years cancer free. We are so blessed!
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!
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.
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.
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.
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.
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.
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.
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.
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!
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!
