Purple!

The much talked about and anticipated purple office has arrived! Spent three days last weekend prepping, painting, and putting back together. I was not quite done by the time Todd and Roger got home Tuesday night: I had not anticipated my stained bookshelves needing so much time to air out before bringing them back inside. Everything looks great! And it makes me happy happy.

Newly stained bookshelves

Aside from a small backtrack with all of the moving of books and furniture last weekend, my back and leg have been doing really well. And I started PT this week! Which is both exciting and daunting. I know it is going to be a long process. Now I trade my twice-weekly chiro appts for twice weekly PT. But hopefully it will all be worth it.

So yes, Todd made it home. Roger had another chemo treatment and as far as I know has continued to tolerate it well.

My mom is getting better walking every day. I was over at her house yesterday and she is almost able to walk without a limp, which is excellent. She will be transitioning to the cane next. Yay mom!

Anyone who wants to see more home improvement pictures can check out my album on facebook. You do not need to have a facebook account to do so, and doing so will not sign you up for facebook.*


*disclaimer for my mom :)

Home Stretch

Mom with Dr. Comstock - er, Dr. Clooney - at her appointment this week

I would be lying if I said I haven't been really down and missing Todd the last week. I am ready for him to be home. I feel so disconnected from him having not seen him for two weeks and only talking briefly on the phone every other day or so.

At first I was engrossed in making the best of "the single life" - and, truthfully, I do fine by myself. I enjoy alone time, it's nice to not have to plan for or think about other people... but it does get lonely.

I was also not looking forward to this loooong weekend during which most people will be out of town or are doing fun stuff and I have no plans. I do, however, have one very fun house project planned: painting my office purple! It's going to be a lot of work but I have three days to do it. If I finish the walls I also have two bookshelves I want to paint. Stay tuned.

Me update: leg is doing about the same, which is to say continuing to get better. Had a (painful!) massage this week and it helped loosen things up and I subsequently had my best adjustment yet afterward.

The run-down feeling from last weekend fortunately didn't escalate to anything. yay!

Had a dental cleaning this week and I'm going to need my first crown. boo! I think the cause is actually the way that I hold my nebulizer cup in my teeth - go figure.

I was really dreading my pulmonary appointment on Thursday because I haven't been able to exercise like I want with my sciatica. I kind of got let off the hook, though. I did my PFTs and then my doctor had to run somewhere for some kind of emergency, so we agreed to talk on the phone in an hour or so.

The basic story with my lungs right now is that they are fine (FEV1 46%, up from 43% last time, which was down from 49% previously.) Not awesome, but the numbers are ok at least. (I exercised right before and I really think that made a difference because I checked them the night before at home and they were only so-so.)

I have been coming down sloooowly off of a Prednisone taper since my last appointment three months ago and I haven't been able to get lower than 7.5 mg/day. I have gotten down to 5 before when I was feeling good - which is a daily amount I am comfortable with. (Let's just say my mom's hip-replacement surgery has inspired me to really try to take care of my bones...I already have osteopenia and I'm only 32!)

I just don't understand why my allergies/asthma could continue to be an issue with all of the stuff I am on for it! Just to review:

• Advair 500/50
• Singluar
• Allegra
• Prednisone
• Allergy shots
• Xolair shots

I seriously feel like we are throwing everything at it and it's still not great, which is very frustrating. We talked about a few things to try: upping my Prednisone temporarily, having me do a bronco-dilator before my treatments, and, possibly, trying an inhaled medication for emphysema that is being used for some CF patients. (Spiriva.) I'm going to try to get some samples next time I'm in clinic. Dr. C says he has another patient very similar to me that has done well on it. Leave no stone unturned...

We also talked about my continuing to be on coumadin... ugh. He thinks I should go off of it and is going to see if the hematology folks can get me in any sooner than the end of August. He said that I am a unique situation in the clinic, that there aren't really other patients they've had in this situation. That seems crazy to me because a lot of CF patients get ports and some of them must get clots. But the majority of clots they see are with picc lines, which are removed, so they don't continue to have the foreign body in them. So it is a whole different ballgame.

And lastly, I may participate in a trial for a new inhaled antibiotic for CF: levofloxacin - it is in the same family as Cipro. Very cool that we may soon have another inhaled antibiotic for CF!

My mom continues to do well although she's been a little down since getting home. I'm not sure why, I think she is just processing all that has happened - it's a lot! The picture above is from mom's appointment this week, her 3-week follow up, which went very well. Her doctor is not only awesome with exquisite bedside manner, but also very handsome - so we asked to take his picture. :)

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.