Lots of good news

My dad and I at my commitment ceremony, May 2009

The big news around here is that my father, who has emphysema/COPD, was approved for a single lung transplant this week! He made it through all the tests and appointments and was given the green light by the committee. I can't tell you how happy we all are at the prospect of having dad be able to do all the things he hasn't been able to.

My mom continues to make great progress from her hip replacement surgery 2.5 weeks ago. She is going to be released from the rehab facility on Monday. She is going to have PT people come to her house during the week for a while still. And, while she will still need help with some things she should be able to get around relatively well. And she will be home!!

My leg/back (sciatica) has really improved in the last couple of weeks. The numbness is finally gone from my foot. My chiropractic adjustments have gotten easier - as he said they would if I did what he said and was patient - and my leg is a lot less painful. Unfortunately, the healing process is not super close to being over because my back was so messed up even before the sciatica, so there is a lot of ground to make up. I was approved to start PT this week, which is another positive step, and should help me to improve even more, and sustain the changes I've made.

Coumadin update: met with my coumadin doc last week and we decided that he is going to refer me to a hematologist. I am happy with this decision. It does mean that I will stay on the coumadin until then, which will be about a month or so. But we needed another perspective in order to make the decision of staying on coumadin for 3 or 6 months.

I have made a lot of positive changes in my life in the past week. The biggest is that I quit drinking soda. It has been way harder than I thought, because even before when I would cut out Diet Coke (which I think is probably the worst of the sodas that I drank), I would still drink stuff like Sprite Zero, Diet 7-up, Fresca, Diet Sunkist. Oh god, I was a total soda junkie.

The reason for this change is that diet stuff (in particular artificial sweetener and caffeine) is not good for you. I wanted to "detox" from artificial stuff (sweetener) and soda is the biggest culprit for me.

Also, Diet drinks are particularly bad for me because caffeine deteriorates your bones (I already have enough help with that having CF and being on steroids - double whammy) and dehydrates you. So I have been drinking a lot more water, which is another thing I've been wanting to do for a while. Pretty much juice, water, coffee, tea, and beer...the last three in moderate amounts.

Next to health there are the environmental reasons. Not wanting to have Diet Coke at the house, I would often stop and buy one after work. Drinks in plastic bottles really aren't good for the environment. Even if you recycle them, they are still a petroleum product. And the smallest reason was money - while cases of soda in cans are relatively inexpensive, those trips to the convenience store paying $1.50/drink are not.

Enough about soda.

Todd has been in Montana for a little over a week. He is having a great time. Lots of fishing. Seeing a lot of cool wildlife (he saw a moose a few days ago!) And getting to hang out with our little nephew. I am jealous of all these things.

Here at the house, Todd being gone has put me into full "project mode." I have straightened up, cleaned up (here as well as at work and some at my mom's house with the help of her awesome neighbor) - made 3-4 trips to the thrift store in the last week. My friend Jeff is power washing our deck. After that, I hope he'll do the house, and then maybe clean the outside of the windows. We are also gearing up for painting my office which I am very excited about (purple!!)

However, I fear that I may have pushed myself too far even thought I was trying to be conscious of my limitations and energy, and I hope that it is not too late - meaning I hope this doesn't turn into a CF-exacerbation requiring IV antibiotics. Thursday afternoon and evening I was very tired, even after a nap, and though I went to bed early that night, I woke up on Friday feeling pretty terrible. What I call my CF-I-did-too-much-and-stressed out-my-body-yuk. My whole body was sore, my skin actually, almost flu-like, and I was very tired. And my lungs were hurting (strange, I know) and suddenly more congested than usual. Went into work late, napped after work, and went to bed early again in an attempt to get back on track. So far I am feeling better today, but I still plan to take it easy this weekend.

What a week - whew!

Front of Little Duke Hospital

My mom's hip replacement went really well this past week! As in, so far there no complications with the surgery, her pain seems relatively well controlled, and she is making slow and steady progress every day.

The hospital her operation was at is very nice, Duke Raleigh hospital - Little Duke I will call it. They have an entire floor of all orthopedic patients, everyone is competent and friendly. It's a pretty plush place for a hospital.

They decided to release my mom to a rehab facility on day 3 after her surgery. I was never quite sure what went into that decision. In retrospect, we probably would have pushed to have her stay at Duke for another couple of days and then maybe she could have gone home or at least spent less time in the rehab facility.

She was transferred to the rehab facility yesterday. The place is basically a nicer than usual nursing home, not what we were expecting. (The case manager had told my mom it was "the best place" with this and that and the other...I'd hate to see the other places.) They didn't have a phone for her, a walker, the right kind of bed, her pain med lapsed several hours when she first arrived. Needless to say, it was a bit of a stressful day for her.

Anyway, this is my blog, but I thought at least some of you would be interested in hearing about my mom's surgery. There is obviously a lot of other details, but that is the overview. She seems great for having had major surgery four days ago! Which isn't to say the recovery will be easy.

What else... we had a house guest this week, Todd's awesome cousin. We went to see a concert Wednesday night downtown. The band was Mumford & Sons - I love their CD but the concert was just ok. In part because of the sweltering heat (over 90 degrees after the sun set!)

My leg is making a small amount of progress in the right direction. I was given some stretches to do each night and we hope that will keep my back open between adjustments and speed things along a bit. I can't WAIT to be cleared for more exercise. As it is right now, I've basically given up doing much of anything. Which is sad. I see my pulmonary doctor soon and this is not the ideal build-up for trying for awesome pfts, but whatever.

Lastly, I think sort of by default, my docs and I have decided to keep me on the coumadin for another three months. Ahhh...summer. Summer and blood clots.

Friends are the greatest

My friends Jacqueline and Brian and me, circa 2003

This has been a week of catching up with friends. Wednesday night, I had dinner with my friends Jacqueline and Amy. I hadn't sat down with Jacqueline in probably three years so it was really nice. Thursday, I had my friend Jeff over for dinner. He is always good company. And yesterday, I went out with two of my best female friends (and my two soap partners) Elaine and Maura. These kinds of days are so good for the spirit.

I spent a good bit of time yesterday going shopping for and helping my mom to prepare for her upcoming hip-replacement surgery on Tuesday. I think we both know what a huge thing we have ahead of us, but we are trying to roll with it as much as possible. My mom has gotten to the point where she is in a good bit of pain just walking around the house, so it will definitely be a big change for her to be more mobile again. Lunch out this week and a short shopping trip wore her completely out!

Todd's dad is coming for his second chemo treatment on Monday, just coming to Raleigh for the day. I hope that he continues to not have a difficult time with side effects. He and Todd are leaving for Montana in two weeks. Sadly, I don't think I'm going to be able to join them for part of it. We have had so many expenses this past month, and tickets out there are not cheap. I hate to miss it, but think the best thing for me to do is stay here.

My leg is doing about the same...not very good...although it did get a teeny bit better this week. I managed to get some lidoderm pain patches, but I'm not sure how much good they are doing (yet?) My turtle-paced progress continues to frustrate the hell out of me. And I am now gaining weight from my lessened schedule of exercising and the recent stresses which have made over-consumption sort-of inevitable.

Lastly, we have not for sure decided whether or not this week will be my last week on coumadin or not, but I have a feeling I am going to end up taking it for an additional three months. I am disappointed, but it is not the end of the world.

Sinking in

Roger blows out birthday candles with help from the little ones

Todd and I were back at Holden Beach for the long weekend (which also coincides with his father's birthday!) This trip was much more enjoyable than the last one. Roger has been back at the beach for over a week and is doing really well - seems back to his baseline not having too much pain or side effects from the chemo. He is, however, starting to lose a bit of his hair.

Birthdays and holidays have an added weight when family members have health issues. It was really great that Roger got to spend his birthday with three of his four sisters, Todd and I, and other members of his extended family. Roger seems to fit in at the beach like he's lived there forever.

For me, I don't really think it was the birthday that sent me into a phase of melancholy. It was, honestly, seeing how our dog Doc follows Roger around everywhere. Even if the other three dogs are hanging out together, Doc will be with Roger, always. It made me think about how much Doc is going to miss Roger when he is gone...how much we all will miss him...how much of a void there will be. I truly hope that he has several more good years ahead of him, but when someone is starting chemotherapy and we don't know the prognosis, it's unavoidable to think about sometimes.

I spent a lot of the weekend recovering from my extremely busy week, lots of appointments and an out-of-town work retreat left me zapped. But I also think that I was a bit depressed now that things are sinking in. When Roger and Brad were here a couple of weeks ago, I was just in survival mode - we would do anything and everything to make him comfortable and help him to feel better. And there wasn't room for the emotions that go along with that: sadness, uncertainty, helplessness. So now I am processing some of that.

Part of Roger's collection of sea shells

Also, in the spirit of enjoying the moments of Roger's health and feeling good, I have been tempted to see if there was a way I could get out to Montana with he and Todd and Brad in a few weeks. And I want to see Sawyer, our little nephew, as much as possible, too.

Finally, I will update you on my leg. I suspect that a good evening walk on the beach this past weekend was enough to set me back about 3 or 4 weeks. I am more than frustrated. I had been on a really good recovery course at the end of last week, although I was having a bit of pain and tightness crop up - even a bit ahead of schedule, my chiro said - and now I have regressed. He says to not get frustrated, but how can I not? My leg is really bothering me. My glut and back of my leg are really tight and painful. I am not limping anymore, but bending down or doing certain things where I twist or lean are really painful.

The sciatic nerve - I have an issue with my L5 vertebrae (labeled) pressing on it

Someone commented on my last blog that they hadn't heard about my leg. Frankly, I have become so tired of things going wrong with my body that I have tried to keep it to myself unless someone asks and is really interested. Anyway, for those who want to know: this issue first started with what I thought was hamstring tightness over a year ago. It came and went, but mostly got better until I started biking a lot this spring. I must have set something off in my back. Back - glut - leg - they are all connected.

In any case, I have sciatica in my right leg - the main manifestation was a partially numb foot, which has improved since my treatment started - thankfully not the terrible pain some people have. My primary care doctor recommended an excellent chiropractor, who I have been seeing twice a week for the last 3-4 weeks; eventually I will start PT as well, once things are not so "locked up." I am icing it 2-4 times per day, and, hardest for me, I've had to curtail my exercise to only elliptical, stationary bike, easy stretching (no yoga), and short walks. Humph.

And to pile on one more thing, my coumadin doc is now being wishy-washy about whether or not I can go off the coumadin in three months (coming up next week!) or whether I should continue on three more months. I am bummed about this as I am so ready for some Advil to help my leg (not allowed on coumadin) and to not have to be so mindful about the amount of alcohol I consume.

I wish there was more good stuff to report! But unfortunately, it's just this way right now. Also on the horizon is my mom's hip-replacement surgery next week. I am the only family member who lives here, so I imagine it will be a bit of work for me. How much isn't really clear yet.

Wish me luck with all of this!

Day by Day

Me and my Sam

What could have been a very difficult and stressful week ended up not too badly in the end. Todd's dad has been with us since last weekend. He had to start on chemotherapy for his prostate cancer that has metastasized to his bones. Fortunately, he tolerated his first dose very well and his pain is under much better control than it was last weekend.

Todd's brother Brad was also here for a good part of the week but has since returned to the mountains and will soon be on his way out to Montana for the summer. I enjoy having Roger and Brad here. We all get along well and they are easy house guests.

Guess who thought the new guest bed was especially for her? Miss Squeek!

This has also given us the opportunity to furnish our much talked-about guest room (aka Todd's office). I wish we had more space! But we are making do well with what we have for now. We got a really great twin bed and all the accouterments for a comfy stay.

As for me, my problems seem really minor right now but since this is my blog I will say that my leg is finally doing a tiny bit better. I think the numbness has improved in the last day. My doctor told me to be patient; my chiropractor told me to be patient; and my inner yogi told me to be patient. But it wasn't until today that things seemed at all better. I have modified my exercise and tried to be very mindful of anything that was uncomfortable. I hope this is a sign of good things to come.

Doc is handsome as ever. :)

Probably the most exciting thing that happened this week was getting the dogs groomed for the first time. Oh my gosh they look so incredibly cute, adorable and handsome!! We wanted our Sam to be cooler for the summer, and I thought that if I didn't take Doc too, he would look like a raggamuffin. They both look so so so good.

There is probably more to tell, but I can't remember right now. Life is intense; life is awesome; life is ever-changing. Happy to be here for it. Glad you joined me for the ride.

Raleigh - Holden - Raleigh

Doc and Sam laid out in the back of the Subaru coming home from Holden Beach (they were nice enough to share part of the back seat with me, too)

Me: went to the doctor on Monday about my leg pain - she prescribed me muscle relaxers, sent me to a really great chiropractor, and referred me for PT. I am glad because I finally feel like I am on a path to fixing this problem so that it won't keep cropping up. But I am also frustrated because I have been exercising a lot and the chiropractor told me to lay off exercising (and yoga!) for a week or two. Patience is not my best quality.

When I last wrote, I thought that the virus I caught weeks ago had settled into my sinuses. I decided to call my doctor and start on an antibiotic sinus rinse, which has worked wonders before. This turned into a week-long battle between the nurses at my doctor's office, my regular pharmacy, the compounding pharmacy that I newly elected, and my insurance company. When it was all said and done, I paid a mere $15 for the prescription and - this is the kicker - my sinus infection had basically cleared up on its own. As of now, my lungs and sinuses are feeling almost back to normal, which is great. Couldn't have done it without exercise!

Now to the real drama of the week. Todd's dad switched to a new hormone therapy for his cancer recently. It disagreed with him pretty badly, so they gave him some meds to treat those symptoms but then eventually took him off of the original treatment. Problem was, he started to get pretty out of it, really badly confused about things, and just wasn't himself, so we were all concerned.

Todd and I drove down to the beach where his dad is staying last night, thinking we would stick around and help him out, keep an eye on him for the weekend. But things were concerning enough that we turned around today and brought him back to the ER at Rex hospital in Raleigh, where he has been getting his cancer treatments. I am glad we did that, because they were able to rule out the most serious things like stroke, heart attack, dehydration, low oxygen saturation. But unfortunately, we still do not know the cause of his confusion.

So here it is Saturday night and I'm totally exhausted. I feel bad even saying that because I know that Todd and Roger must be ten times more tired than me. Family health drama can really take it out of you. But I tell you what: there is no place I would rather be when something like this is happening than with them. I hope that Roger is feeling better soon.

Not great, not terrible - somewhere in between

It is hard to describe how the week has been without sounding complain-ey, which is about my least favorite thing in the world. I will try to be brief on that stuff. But let's start with the good news!

808 Soap had a really successful First Friday. Several of our friends came out, and we had a really good time hanging out with everyone at Father & Son. We are doing a fundraiser for the Cystic Dreams Fund (founded in memory of my good friend Paul Mooney) giving 20% of our sales this month.

We also had a Kentucky Derby/Poker Tournament party yesterday that was a lot of fun. My horse was ahead until the very end! Such a tease. Really, we know next to nothing about horse racing but it is fun to get into it one day a year. Todd ended up winning poker! And I came in 5th place out of 20 people.

Also, had some really nice bike rides this week, continuing to enjoy the spring weather. On Monday, we rode to J. Betski's, a Polish and German restaurant not far from our house, and enjoyed an array of kielbasa, bratworst, pierogies and a strudel for dessert. It was good. :)

In less exciting news, my leg has continued to give me problems. I have been limping around now for over two weeks. I don't even notice it anymore, which is kind of sad. I was too busy to make it the chiropractor this week, but I was beginning to think I wasn't going to solve the problem there, anyway. I think this is an issue with my sciatic nerve, and I have an appointment with my primary care doctor tomorrow to start getting to the bottom of this. Biking or doing my elliptical machine don't seem to bother it, but walking a lot will irritate it. Fortunately it's not painful most of the time, for which I am thankful.

Also, the cold that I've been messing around with recently dropped into my chest sort of suddenly and I ended up taking Tuesday off work just to sleep all day. I did feel better after that. By about Friday I began to realize things might actually be settling into my sinuses, and I called my ENT to get on the antibiotic rinse we talked about. He was in surgery all day, and then when something did get called in, there was a problem at the pharmacy, and then my insurance didn't want to pay for it (that is very unusual.) So it will be Tuesday at the soonest before I can get on that.

I have mentioned here before about my father's respiratory problems and his pursuit of a lung transplant. He is now almost through with the evaluation process, and then his case goes to a committee to decide if he is eligible or not. Things are looking pretty good at this point. It is exciting, and also scary.

What I haven't mentioned is that my mom is also having some health issues right now. She has been off work on disability for the past couple of months not able to walk around easily. After this and that it was determined that she will need a hip replacement surgery. I hate that she has to make a decision like this, but I also believe that it can help her not only to be in less pain but also to get around more easily - she needs especially to be able to go see her new grandson when he is born in September (yay!). I'm also hoping that it will help get her into a better routine with being more active and being able to enjoy (hopefully soon!) her retirement.

Todd's dad is also having to deal with some progression in his cancer. But I think they've figured out another type of hormone treatment that might help him - after that they would have to try chemo. In the meantime, he and Todd are planning a trip out to Montana in June for two weeks. We hope the new hormone treatment will help, and that he can enjoy another good stretch of health.

So yes, I have a lot going on both with myself and my parents right now. As for me, I'm not really sure where I'm at. I am certainly not out of the clear as far as needing IVs. I have an eye to next weekend's camping trip, and I really want to be able to go - of course, only if I am feeling well. Maybe treating my sinuses will calm down my lungs. My lungs aren't terrible so I have some wiggle room.

My plan for the week is to get on the antibiotic sinus rinse and continue to push myself to exercise as long as I have the energy. And just take it day by day.