Saturday, March 31, 2012

Rocking On

Dearest Friends,

I am giddy. Yes, giddy. When I first met Rob it was kind of shocking to me that someone in their thirties had never owned a new car. His siblings had. This guy had worked two jobs at times. I knew that somewhere up the road, a new car was in his future. When I got my last job and we had two incomes one day we went shopping to get him a new car. He spotted the car I now have and insisted that I buy that for myself and he would take over my old car. That was six years ago and the old car is a 1999, that means it's 13 years old. While it was a nice car when we bought it back in 2002, it now had over 100k on it and was getting a bit rickety. It has been in good working order but we just had to put a new catalytic converter in it. When my father passed away my Mom split up his insurance money amongst us. It wasn't a lot but combined with what we were given of my grandmother's estate it made a nice downpayment. My younger brother was a Godsend as he just bought a Nissan Rouge for himself and had done all the research and knew what Rob liked. We had previously bought his old truck for Rob. He negotiated a phenomenal deal with the salesman as he set up deals for his mother-in-law, himself, my sister and then us. It was the end of the month too where dealerships have added incentives which buyers can take advantage of. I took Rob in to have him test drive it and he was in love. You know that look when you see it. He also mouthed "I LOVE this car."

Over the summer as I lay in ICU and Rob slept in the recliner next to me I thought of wanting to see Rob have a new car. When I prayed I asked God to let me live to see it. Last night that prayer was answered. They had a banner hanging in the car that had his name on it. It was so sweet that I admit it, I cried. Tears of joy. My joy is greater in giving than in receiving. The past three years have been like a tsunami for us. Our wedding song was "Come Rain or Come Shine". Little did we know what we would face. Throughout it all Rob ha been with me every step of the way. He has given up every vacation day to get me to Philly for doctor visits. He alone has seen me at my worst and shared my deepest fears. I could never repay him, nor would he expect that. What I can do is show him what he means to me. Last night was my chance and I seized it.

It was incredible. #2 on my bucket list is a trip to Ireland. I need a rest first though.

Life is good and sweet and full of moments that make the fight worthwhile.

Thursday, March 29, 2012

The Day Before Friday

Even though I know longer work, I love Fridays. Why? Because that means Rob will be home for two days (providing he isn't working Saturdays which he does every time they offer it.) After knowing Rob for twelve years I still enjoy his company. He never complains and always has a positive attitude. I am more of a realist and sometimes I need someone to point out the good a second time after I have evaluated the situation with both good and bad. Rob keeps me wanting to fight. At times I am tired of the fight. Remember that my first cancer was over thirty years ago. Since then I have had a few years where things went smoothly but it's been a battle of one sort or another. Honestly, this battle with the PAH and the fluid retention has been one of the most difficult things I have had to deal with. At this time last year I was in dire straights. It took about until May to realize that I had what would end up being 4 litres of fluid (about a gallon) in my chest. That was removed twice. Since then, I have battled with the fluid. When I have the fluid it interferes with the PH medicine working. I eat almost no salt but the problem persists because your heart is a pump and mine is not working properly. Most people who have heart issues have them either in the right or left side. Both sides of my heart have problems. It makes treating anything more complicated.

I want to get a box mailed off today to Rob's sister and her two young sons. We hadn't sent them anything for Christmas and since their birthdays are here I decided to send an Easter/birthday box. I think that will mean more to them than getting something at Christmas when they have so much then. Not many people acknowledge their birthdays as they live in the south away from her family.

Yesterday's mail brought many smiles to my face. My mother-in-law sent us a lovely card and money to go out to dinner for Easter. My friend, Dee, sent me a book and card and I received a card to test drive a Toyota and get a $50 prepaid credit card. I'll take it! That will give me a tank of gas. My friend and fellow blogger Mary has been sending me snail mail cards that brighten my days. Although I love email there is something about holding a tangible card in your hand that feels more personal. I miss that.

I am working on a fund raising project for the Pulmonary Hyptertension Association. It's a "no show tea." I have made a simple invitation which gets mailed to invitees with a tea bag. I sent an invitation to one friend who has already responded with a donation in my honor. I am doing this for Mother's Day to honor the mothers who have this disease. I learned, through my online chat, that some women develop this during their pregnancy. Once they have it they are not supposed to have more children since their life expectancy is lowered and it would take a toll on their health. Imagine having an infant and being told you have only two to three years to live. I want to try to raise public awareness about this disease which only one in a million people get. There are many doctors who feel that more people have it but because of the common symptoms (shortness of breath, fatigue) it is undiagnosed. Often it is secondary to another disease such as heart or autoimmune disease. IF you would like to receive an invitation to the Mother's Day Tea please email me your snail addy by using the email link on this page. I will be happy to send you an invitation. I know we are in economic hard times and for many this is not something you can consider. For any who can and choose to participate, thank you.

Have a great weekend.

Monday, March 26, 2012

Slide Show

decided to play around with SmileBox and this is something I quickly did. I weigh 50 plus pounds less than I did in these photos!

Click to play this Smilebox slideshow

Create your own slideshow - Powered by Smilebox
Another digital slideshow by Smilebox

Sunday, March 25, 2012

Being Understood

I have been chatting online in chat rooms and attended a webinar and made a PHriend who really knows what I am going through. We talked on Friday and I felt better. I am having great difficulty sleeping. I can't turn my brain off. My friend explained the first few years were the worst for her. Now she has meds that have been working for her. She thinks it is probably for the best if they change my medicine and the proposed medicine is one that has worked well for her.

I realize how much I lost when I lost my job. I was focused on the financial impact only the first several months. Now I realize that I lost many of my friends and my social life for the most part. I really miss some of my coworkers. They try to stay in touch. I still get emails and texts. It's just not the same.

I am trying to think about yardwork for the spring. I can't do much physical work anymore. I can get help from my son with planting and digging. He was here yesterday tuning up the lawn mower. I am hoping it will be a good distraction. We shall see.

Friday, March 23, 2012

Spring has Sprung

It was gorgeous here today and yesterday. I am really lightheaded yet toying with the idea of poking around in my flower garden. I have some new stuff to plant.
I took my diuretics (the super duper Z pill) and in the last two days six pounds of fluid has come off. YEAH!!!! I take it again today and Sunday. With the fluid off the adcirca has a chance to work.

I had a sort of an arguement with my mother. My little brother goes crying to her that I hate him (come on dude grow the hell up) because I told him I would not bother him again when he didn't want to help me on Sunday. I cannot stand the disappointment of having people tell me they are going to be there for me etc. and then when I call them for help they don't answer the phone or ignore the text or whatever. I need people who can lift me up not pull me down. Sorry but that's the bottom line. I am not doing well physically which has an impact on my emotional being. Either help me or get out of the way. Don't just stand there offering to and then leave me hanging. I wouldn't do that to others and I won't have it done to me.

On a good note I went out yesterday and had breakfast with a friend. It was SO ENJOYABLE. Most of my "friends" never call and specifically ask me to do anything anymore. Well, this morning my neighbor called and asked if I wanted to take a walk. Considering I am really short of breath that was not good timing and I had to say no. Still, I appreciated her thinking of me.
Ok, the dirt is calling me and the promise of having beautiful flowers. Enough so that I can cut some and bring them in the house to cheer me. I changed my header. These are actual pictures of plants that I planted here from my grandmother's flower garden in Maryland. Oh how I miss her. How I miss her kind words and loving gestures. The one thing about leaving here is knowing I will once again be with her. I still feel her love for me though she is gone. I still feel her influence on my life and thoughts. I knew her by heart.

Thursday, March 22, 2012

Exhausted and Struggling

I had very little sleep last night and had to be at a radiology facility at 8 a.m. so this will be brief before I take a nap. I went to Philly on Tuesday. It was a lovely day and smooth travel. That's the good part. When we arrived we sat for nearly an hour before being called to the nurse's station. Once there a nurse was being chastised for letting me wait that long when I was the first patient to be seen. (NOT by my PH specialist.) Finally they got my stats and began my six minute walk. I was breathing so hard at one point I had to stop and start a few minutes later. I did worse than I did back in December. I got inside and gave all the information to the "fellow", had an EKG then repeated for the nurse practioner. The PH doc finally came in and looked very deep in thought. He began to say that I was slightly worse, certainly no better. I wanted to cry. I explained I had just gotten over the pneumonia but then he asked if I had been better prior to getting it. Honestly, little, if any. He doesn't think the medicine is working. There are a few possiblilities why not. One is that my body is just not responding. Second is that I might have fluid on me. Fluid will stop the medicine from being absorbed. (To check if this is the cause he gave me a very strong RX to take three times this week to see if fluid comes off.) Thirdly, because my PAH is secondary to my heart disease it may not respond AT ALL. It felt like the floor was unsteady under me. I ask him a few questions and he is deep in thought. I almost thought he was ready to throw in the towel. Then he said "We fight. That's what we're all about. We'll keep fighting." That's all I can say right now. I have severe PAH. From what I have read one usually has two years from their diagnosis to live. I was unofficially diagnosed this time a year ago. I need something to work. If not the prognosis is not good.
Rob had a stoic face and we went to the lab. We had dinner, came home and I only made one call to my aunt. She shows more caring that my mother or siblings do. I had told Rob's Mom I had pneumonia over two weeks ago and she got me an email. I feel so alone, except for Rob and my son Tom. I have to lay down and will write again soon. I am drained.

Thursday, March 15, 2012

Sleepless in Robtopia

It's 2:30 in the morning and I should be sleeping. I don't think the iced tea I had with dinner was decaf, although I thought it was. I am going to be one tired girl tomorrow when the phone rings at 9 a.m. and the guy tells me when he'll be here to fill my oxygen tank. I'm down to two lights so I need a refill. This past week I was on it 24/7 so used much more.

I am happy to report that I saw Dr. F again on Tuesday. They called me Monday evening to let me know that I had pneumonia and it was in two lobes of my right lung. They wanted to see me again. Dr. F remarked my coloring was much better. My fever was also gone and my lungs sounded better. He is keeping me on the Avelox a few days more though and told me I wouldn't feel completely well for several more weeks. This morning when I woke up I noticed that I did feel better though. Last week was really bad. I actually was able to go to the grocery store and pick up some things.

The weather was gorgeous today. 72 degrees and sunny. I was sad not to be able to take my laptop out to the patio but my patio table was destroyed in the last bad windstorm. I have not been able to find another that is within my budget except for a tiny one that was not at all what I need. The doctor bills are rolling in every few days and over the next month I will be paying a lot for those. I am so grateful that in this economy Rob has a job. He will be working overtime on Saturday. I hate when he works on the weekend as I feel he deserves and needs two consecutive days off but he insists he doesn't mind. We are used to two incomes and over the past year the most income I have been able to have with disability is 60% of what I made. That is taxable income I believe. I still have yet to have my taxes done. I did get the paperwork together though.

Have I mentioned that I can no longer sing? Actually it's been quite awhile. When I went to the ENT I was so hopeful it was something simple. I found out that it's my lungs and I will never really sing again. I can make these attempts but it's not pretty. My voice cracks and I cannot sustain a note. I never had a great voice but I enjoyed singing along. I just purchased the Adele 21 cd which I have enjoyed so much. Now the singing must take place inside my head. It's difficult to get used to.

One of my high school friends called me the other day. She has ovarian cancer, stage 3. She was so overwhelmed and told me she had no clue what it was like to be in such a predicament. I listened while she expressed a lot of feelings. I told her that what she was thinking was normal under these circumstances. It occurred to me that sometimes just listening to someone is such a help to them. She lives in California, so very far away. I wish I could drive to her home and just hug her and cry with her. We all need people and to feel that someone understands and cares. No matter how tough we are. I am grateful that we have Facebook and emails and we can communicate almost instantly with someone so far away. I can call her but she has a cell phone with limited minutes instead of a home phone so I have to be mindful of that. At times like this I wish I were wealthy and could shower her with flowers and reminders that someone cares. Cards will have to do.

Monday, March 12, 2012

Pneumonia Again

I am a bit down tonight. (Good think Judith Heartsong's radio interview was on and it lifted my spirits. She is the artist who painted the lovely sunflower painting displayed on my page.) The doctor had me go for a chest x ray on Friday I think. He called tonight and said I have another pneumonia. It had been a year and I was ever so hopeful that after the new surgery I was home free. Not quite. This pneumonia is in my right lung which seems to be the weaker and it is in two lobes. He wants me back in his office tomorrow. I am hoping and praying I don't end up back in the hospital, or with a picc line. I already have things purchased for our St. Patrick's Day meal. In all honesty I have felt really bad for the past ten days or so. I am supposed to be on oxygen 24/7 and I can't tell you how inconvenient that is. Yet if I take it off I have so short of breath and dizzy at times that it's worth the inconvenience. I looked in the mirror and thought "I look awful." My coloring is off and my eyes look odd. Daylight bothers them right now. I will see the doctor tomorrow and see what he says. He might prescribe another antibiotic but I think at this point most pills don't work for me. The big gun is vancomyacin which can only be given IV I believe.
Going to sign off and go to bed. I am sleeping at least ten hours a night which is not normal for me. Usually eight is a lot. If you notice I'm not online for a few days then I may be inpatient. It's really bizarre when the nurses remember you. I was just there last May and June. If I could get frequent flyer miles I could take a nice trip.

Saturday, March 10, 2012


I first began blogging back in 2005 I think. My memory is not what it used to be since my fluid crisis of 2011 and another heart surgery. I try not to stress over it. The reason I began my original blog (which was on AOL Journals) was that I felt more people needed to know there were cancer survivors. At that time I had survived Hodgkins disease for about 30 years and wanted others to know that there were long term survivors. I soon learned that the radiation which had saved me had also done damage to my heart and I blogged about my first heart surgery when I received a mechanical aortic valve. Later I decided I wanted a more personal blog where I could journal about life in general and created Copious Chatter on AOL. Shortly thereafter AOL began allowing ads on our blogs and there was a mass exodus to other websites one could blog out. My blogging mentor Jennifer told me she was coming to blogger and I followed her. She was so wonderful always giving me tips on how to do things in my blog. It was hard to leave AOL because they had also highlighted my second blog and made it their #1 pick. Still, it was ridiculous to journal about something serious when there were banners on top of what your journal.

When I came to blogger I kept my journal a mix of the health issues and personal. When I was recently diagnosed with PAH I started a second journal as well. That one deals only with the disease and not all the other personal aspects of my life. Two nights ago I attended a Webinar about blogging and now I wonder if I actually need two. It's just that someone who doesn't know you might want to learn only about the disease and I don't have a way to sort the different posts. They might find the other details of my life boring. Most of my regular readers have been with me awhile. Many are not registered and can't post comments except for anonymously but send me emails if they want to share something about a posting.

I blog now because it's an outlet for me. It's also a way of keeping people I care about informed of what is going on. To quote Sally Field upon winning her second Oscar in 1985 "you like me". It's a wonderful feeling to know that others care about us, even in the virtual sense. Most of you who read my blog have your own and I read them as well. Each blog brings something else to my life. I am thrilled when my friend Ronni gets a good report. I love to see what Judith has going on in her studio. I could go on and on about what I love of each of the blogs I read. I hope people can go away from reading something I have written and find something meaningful to them in it. It also occurs to me that when I am no longer here to post, you might remember me. I have let you see the polished and the unpolished versions. I have shared hurts and disappointments but I have also shared joy and victory. I have let you in and shared my thoughts. I think that is what blogging is all about.

Thursday, March 08, 2012

Random Thoughts

I am actually in my bed on the laptop. I am freezing despite the fact that the heat is about 72. I have been laying here thinking (unable to fall back asleep) that my life could have inspired a Dickens novel. He had a little Nell in one of his novels. What about a follow up, years later she has a baby and three years later has cancer. She survives that but ends up widowed. (Don't think anyone other than royalty could have divorced back then.) She finds love again only to learn that she has a fatal lung disease. Somewhere in there would be the chapter where she is sick and has so many specialists she doesn't know which to call. She is so frustrated that she almost never goes out anymore that she begins to think she is Miss Haversham. I can almost picture the book jacket: Victorian style dress and bonnet but wearing an oxygen cannular. On her dress is embroidered a scarlet letter, an elegant script with the letter N. I think this could be a best seller, at least get Oprah's endorsement.

I saw my lung doctor two days ago. Actually, the one I am so attached to, Dr. G wasn't available to see me that day as it's one of the days she's not in the office so I saw her associate, Dr. F. This guy was damn cute for a doctor. If you watch the new Hawaii Five O he's like Danny but actually nicer looking. When they took my oxygen level it was low....low like you need to be on it 24/7 which I now am again. At least for the next few weeks. I have a cough and a lowgrade fever and chills. My lungs felt very tight. They did an xray at the radiology place but haven't heard anything, which I assume is good news. Bad news travels fast. He prescribed the drugs they give me for pneumonia and my lungs sounded okay but he thinks I might have a bad bronchitis which can easily turn into the dreaded p for me.
I have been babying myself all week. Not doing much of anything. It's not hard to take to a chair or your bed when you are sporting a 90 foot oxygen hose. This hose is long enough for me to come upstairs in my bedroom with. I shouldn't complain because oxygen makes me feel so much better. It's just that right now I still feel cold and sick.
Rob is working late all week. My mother has somewhat redeemed herself having come over here the one day and she took me to the lung doctor the other day. She also went out and picked us up salads for lunch one day. Honestly eating is the last thing on my mind right now but I have to eat something or the meds give me nausea. Folks, when I have a strawberry cheesecake sitting in my fridge and I feel like it's too much trouble to get a piece, I am sick. My mother called and said she will bring lunch if I tell her what I want. There's really nothing that even sounds good to me right now. Well, going to go downstairs and grab a hot cup of tea.