Day 61

Happy Monday, I hope your week is starting off well.  I'm in Clinic with my cousin Cynthia, I have 90 minutes left on the IV's.  Now, that I have my picc lines I can get Magnesium and Potassium through the IV's.  The Potassium pill is huge and it's not easy on your stomach, I threw up my last dose so I knew I would need some today.

Dr. Horwitz has decided to start me on oral antibiotics which will take an hour out of my Clinic time. My CT scan came back looking really good, almost clear of any infection in my lungs.  Hopefully,  I'll be able to stop the IV lung medication soon. Our main goal is to get to a point where I can have a day off from Clinic, which would be awesome.  I'm really feeling good now, I haven't been sick, I've had only a little bit of nausea and I have energy. Cynthia commented that really there's not much for the care giver to do now, since I've become stronger. I still need help with things since I still can't prepare certain foods or clean the house.

The weather has turned warmer and it's supposed to be in the 80s by mid week.  I'm happy for the warmth, I haven't been able to walk outside the last two days.  Hopefully, this week won't be as crazy as last week.  No more hospital visits would be ideal.   Well that's all I have to report, I hope you all have a good Monday.  Signing off from the Clinic.

Day 60

Hello friends and family, I hope your weekend is going well.  I'm finally home from a long day at Clinic and the hospital. I found out last night that today after, I finished with Clinic, I was to go to the hospital where they would put in my picc line.  This morning, I went to Clinic at 8:30, was finished around 9:45, then Eric took me to the hospital.  I was not formally checked in but they had a room for me to hang out in, while I waited for the picc line nurse.

I ended up taking a long nap and a late lunch before she came at close to 3:00.  The whole procedure took about an hour, it didn't really hurt but it was kind of intense and my nerves were on edge.  They numb you up pretty well, it actually hurt less than having an IV placed.  Now I have two lumens coming out of the inside of my left arm, these will give me my treatments without IV's in the hands, yay!

After the procedure one of my favorite nurses, Victoria, took out my remaining IV, man, it feels good to have my hands back!  The IV's were really starting to hurt after having one in for two nights and the other for one night.  I posted a picture of me with my wrapped IV's, my hand wraps made me feel like a boxer. After that I called Eric, he picked me up and took me home.

Now we just finished dinner and will probably watch a few more Grimm episodes, we're hooked!  My cousin Cynthia arrives a little after 7:00. Eric was awesome and cleaned the apartment to prepare for her arrival.  Once again he continues to be an excellent care giver, husband and best friend.  This whole experience has made us so much stronger and we were pretty strong to begin with.

That's it for now, I hope you all are happy and thankful, I know I am.  Much love from apartment 302.

Day 59

I'm sitting in Clinic right now with two IV's one in each arm, but it will help to shorten my time here.  My nurse said why not have two IV's so we can get things done quicker, as much as I hate getting IV's I jumped at the chance.  The only thing is going to the bathroom might be a little complicated but I'm sure I'll work it out.  At least the IV's aren't in the back of my hands so I can type and have some functionality.

I wasn't able to get a picc line put in yesterday, I'll most likely have to wait until Monday which isn't that far away.  They have to get a clean blood culture showing no bacteria before they will put it in, hopefully they'll get my culture results back today.  Pray for a clean culture.

We dropped Dad off at the airport this morning, he had a 6:00 flight so it was early.  It's always hard to say goodbye but I'm so glad he came.  Dad took good care of me and it was nice to spend so much time together.  It's becoming a tradition for Dad to introduce us to a new show every time we visit.  First it was Dexter, then True Blood and now Grimm.  We stayed up watching episodes with him before bed, it's a cool show right up our alley.

Tomorrow night, my cousin Cynthia will arrive as my next care giver.  It will be nice to have her here.  Until then, Eric and I are enjoying a quiet weekend before he has to travel again.  Next week he goes to Greenville, SC just for a few days but the week after that he'll be home all week so he'll be my care giver.  I'm so thankful for all my care givers, I'm so blessed to have so many people to help us out.

Well that's it for today, typing with two IV's takes a lot more strength than I thought.  I hope you all have a wonderful Saturday.  Peace out from the Clinic.

Day 58

Happy Friday everyone!  I'm feeling really good today but I still have to spend lots of time in the Clinic.  In fact, all weekend I'll be here, which is not fun but it's necessary.  Now I have a peripheral IV (through the vein on my hand or arm) which is not as strong as my hick man and it takes a whole lot longer to get medicines since I only have one IV line. Yesterday, Dad and I were here from 9:30 until 5:00!

Today, we started at 8:30 and we are hoping to be done in time to get over to the main hospital because I have a CT scan scheduled for 4:00.  I think we'll make it especially since they gave me a magnesium pill instead of IV today.  Yesterday, magnesium was my last IV, typically it just makes you warm but it hurt so bad going through my vein that they cut it off early.

My CT scan is to check my lungs, hopefully it will be clear, it shows a lot more than the chest x-ray.  I'm sure I'll have to meet with my Infectious Disease doctors soon for them to confirm that I'm okay. My lungs really feel good, I just have a little bit of an ache when I breathe deep.

My blood cultures revealed that I have two types of bacteria that they think came from my hick man so I'll be on extra medication for a few more days.  Which sucks since that means my Clinic time will be increased for awhile and the weather has been beautiful!  Such a shame to spend so much time inside. Plus, I still haven't had a chance to see the Hunger Games, but I'm just about finished re-reading the book - it's seriously that good!

Wow, I just talked to one of my doctors and she said there's a chance I could get my pick line inserted today.  A pick line goes in your arm and has two IV ports, which would make my treatment go faster and I wouldn't have to be pricked for a new IV every day!  Originally, they told me it might not be put in until at least Monday!  Say a little prayer that we'll get it in today!

I must thank my Dad for being a great care giver, he's had to see some gruesome stuff and spend a lot of time at the Clinic.  He told me it's hard to see me in so much pain, but he's been great at making sure I have everything I need to feel better.  I'm very blessed to have such a great family.

Well that's it for today, I hope your day is beautiful!  Much love from the Clinic.

Day 57

I just learned that I will be spending my whole day at the Clinic but that's still better than being in the hospital.  This is what I miss about my Hick Man, I don't have 3 lines anymore, my poor hand has one IV and I have around 4 drugs that need to be pushed through one line.  Once I can give a clean blood culture, they will put a pick line in my arm.  I think the pick has 2 lines that would be much better than 1 and it would be nice to get the use of my hand back.  Right now I'm typing with 1 hand.

In other news, I took the most wonderful shower today.  For the first time since October, I was able to take a shower facing the water and be able to wash the skin around my hick man.  I would have to cover the whole area with saran press & seal, I couldn't get it wet so my top half of my body was covered.  Plus, (sorry men) I'm able to wear a bra again!  I never expected to be happy about wearing a bra but I am!  My poor father was nice enough to buy me one because I didn't even have any here in Durham.  Now I feel a little more normal, except for my hand IV which is wrapped with a bandage wrap, plus, my bald head isn't that normal.  Oh well, all this has taught me not to care what people think about me, I just go with it, whatever it may be.  

I'm feeling great and having an awesome time with Dad.  I'm so glad he could come be one of my care givers, it gives us lots of time to spend together and just hang out.  He's done great, dealing with being in the small hospital room and hanging out at the clinic.  It's just really nice to be around him.  

This morning, I got a call from Jaidee, one of my best friends from Buffalo.  She and her family are visiting family in Jacksonville, FL this weekend.  So she is hoping to stop by for a visit on their drive down.  I would love to see Jaidee, her hubby Chris, and her two beautiful children; Genevieve and Henry.  I just have to get the okay from the doctor about the kids, I'll be seeing one soon especially since I'll be here all day.  

Eric is in Tampa, working hard.  I miss him as usual but he'll be home tomorrow.  It's good for him to get back to his traveling, I know he'll be happy to see his accounts again. I guess that's about all, I did say a lot for one blog, so thanks for reading.  Love to you all, signing off from the Clinic!

Day 56

Great news!  They are letting me out of the hospital today!  My blood cultures show that the bacteria infection caused by my hick man is almost clear.  The doctors feel I can get my treatment through Clinic instead of staying in the hospital!  I love Dr. Chao, he's on call in the hospital and he made the decision.  He prefers to get people out of the here asap and he said your healthy enough you don't need to be here.

As you can imagine I am thrilled.  I just have to finish getting some blood and I think an antibiotic, once that's done we can go home.  Eric just left for Tampa so this will give Dad and I some good father - daughter time.  Plus, we can try out my new walking stick and run to REI since I think I want to buy another sunscreen shirt.

I feel great other than the IV in my hand, I hate having a permanent needle stuck in your hand.  Yesterday, when they took out my hick man it was horrible.  They literally pull it out of my chest by hand, only it took three good yanks before it came out and then there was a cuff attached to my vain that they could not get it out.  Eric described the cuff like a patch for a bicycle tile, it's what held everything together.

Man it was painful, no pain medicine or numbing.  Eric nearly passed out, he had to get Dad to provide his hand for me to squeeze because he felt so bad.  Finally, the Nurse Practitioner was able to cut the cuff out.  I think since I've had the hick man since October it really became attached to my body.  It truly was horrible, I thought they were joking when they said they would just yank it out but that's what they did. It's a miracle that the spot where it came out of doesn't really hurt.  I'm afraid to look at it but so glad it's gone, now I can take a shower with only covering one hand instead of half my chest!

So for your viewing pleasure I have posted a picture of the hick man right before it was yanked out.  Sorry if it's to graphic for you but to lighten it up I'm also posting some pics of Robyn, Eric and I, perhaps even some baby geese pictures.  The baby ducks and geese have become a slight obsession of mine.

Well that's it for today, so thankful for the early release, I'm sure your thoughts, prayers and my positive attitude is what made this possible.  Keep a positive outlook on your own life it makes things easier.  Peace out from room 9210!

Day 55

Well, yesterday was a tough day, while at the clinic I got the chills that literally shake my whole body, it's called riggers.  Next I threw up, and then, Finally  I had a fever of a 100.3, if it were 100.5 or higher they would have kept me and probably check me into the hospital if it didn't get better.  The gave me some antibiotics and took some blood cultures to find out what is going on.  I thought it might be graph vs host disease which they have just started treating me for which is not as horrible as I thought it would be, it's easy to treat and they aren't too concerned.  So we went home with the instruction to check my temperature every hour, if it got to 100.5 or I got riggers again with no temperature we were to call the clinic to find out what we needed to do.

Luckily, my fever went down, I think it helped that I slept for most of the afternoon - waking up every hour to take my temperature.  By dinner I felt pretty good, I slept well and I felt good this morning.  Dad and I show up to clinic today and find out that I have a bacteria in my blood that they believe came from my hick man lines.  The antibiotics they gave me have done a good job but they want to be safe and remove my hick man.  This is a scary thought for me, my hick man is inserted above my right breast and has three lines that come out of it that are attached to a major vain in my chest.  This is how they draw all my blood and give me all my IV medicines or liquids.  As much as I hate it, it makes my life a lot easier because I don't have to get IV's put in by needle every time.  Eventually, they will give me a pic line in my arm which will only have two lines but it will be better than a hand IV.

Because they are taking the hick man out I have to check into the hospital for a couple of days.  The reason is they have to treat me with 24 hour antibiotics just in case the infection caused by the hick man is still in me.  It's a very common occurrence and considering I have had my hick man since October I've made it a while without any problems.  They don't seem to concerned since they caught it early.

Of course, this means I can't go to the Hunger Games tonight but I'll get to see it eventually.  The only good thing about this is I get to see my nurse buddies again.  Plus, it's good that they are treating this and the graph vs host disease quickly.  As much as I hate to go back in it will be nice to know I won't be in for long!  This is just all a part of healing, these things happen all the time to transplant patients.

In closing I must thank my awesome sister in law, Jenn, for the circus peanuts she sent me!  They taste awesome and make me feel like a kid again.  Thanks so much Jenn!  Well that's it for now I'll keep you up to date as we learn more.  Hope you all are happy and doing well.  Peace out from the clinic!

Day 54

Well Dad and I are sitting at clinic, I still don't know if I'll need any extra blood products or magnesium but my lung IV medicine is already pumping.  If all goes well we will get out of here, find some lunch and then return for the new patient class so Dad can learn all the important stuff.  Once we finish with the clinic we'll go ahead and I'll either nap or we'll go for a walk.

Of course, Dad brought presents so I must give some thank yous.  First of all thank you Dad, Carole and Chase who gave me the acorn charm for my bracelet.  The acorn is retired and for me it stands for my maiden name, Ochs, which most of the time people think it's pronounced Oaks.  Now I have an acorn to remind me of growing up.  Plus, Dad's office put a collection together for us, they sent us quite a bit of cash and a bunch of gift cards to itunes and one to Amazon.com.  Thank you very much to the wonderful people at Bank of America, your generosity is touching and greatly appreciated.

Yesterday, Eric and I were on our walk and we saw that the Geese in the pond now have babies.  We didn't see the duck babies so I hope they are okay but there were a lot of baby geese.  We were careful not to get to close as Geese can be pretty aggressive and protective.  They didn't seem to mind us, they were probably hoping we had some bread crumbs to toss to them.  

In health news, I'm still puking at night, it seems like we can't find the right fix but I have faith we'll figure it out eventually.  I haven't seen the doctor yet so I don't have much else to report.

It's turned cold here so walking outside is not as pleasant but I've kept up with my routine.  Hopefully it will warm up soon.  Well I guess that's all for today, I hope you all have a great Monday!  Peace out from the clinic.

Day 53

Today my Dad comes to be my next care giver.  I'm so excited to see him and have him here for the week.  It's going to be a bit cooler, he won't get to enjoy the 80 degree temperatures but this is more spring like weather.  Eric will be traveling later this week so we'll get some real father-daughter time.

On Tuesday night we are planning to see the Hunger Games!  I am so freaking excited! We figured Tuesday would be a slower night but I'll wear my mask if I have to and I always have my hand sanitizer.  I'm pretty safe when out in public, I know how important it is to stay in my little germ free bubble.

I've had some easier clinics lately, I haven't needed anything except Magnesium, which makes my clinic time shorter!  Of course, I'm sure I'm due for some sort of test or doctor visit to add to my day. Whatever it takes, I'll do, just to get better so we can go home to Charlotte.  My lungs are feeling better, there's only a slight pain from the bottom of my lungs and it doesn't hurt unless I do some deep breathes.  Hard to believe when my lungs first became infected I could hardly move and breathe without feeling like a knife was stabbing my lungs and ribs.  Wow, how far I've come.

Well that's it for today, I hope your Sunday has been relaxing and fulfilling.  Peace and love from 302.

Day 52

Awe the weekend, I hope you all are relaxing and enjoying these two days to their maximum potential.  I'm at Clinic right now and I just learned I only have to have my regular daily IV medication and nothing else.  Yippie, that means more time to spend with Robyn.  We are definitely sad to see her go, she is flying out early afternoon.  This morning she made us delicious blueberry pancakes.  It was quite a treat.  

Robyn has been a great caregiver, she has pushed me athletically, I now walk 30 minutes a day and that time will increase each day.  She also helped me figure out our medical bills, which is a huge relief as I finally feel like I have a system and understanding on how to move forward.  You have no idea how stressed I have been over the bills.  Fortunately, we have met our deductible but we have to be careful that doctors don't over charge us now that we should owe zero as we have met our $6400 deductible.  Insurance can be so complicated and sneaky.

In health news, I'm feeling good.  My lungs only hurt if I use deep breaths, I seem to only puke in the evening, my headaches have stopped and my balance seems to be back.

Now I'll wait for my Dad to visit, he's my next caregiver.  I'm very excited to see Dad and I'm glad I'm up and moving around, I would hate for him to visit when I was at my worst.  

Well that's it for now.  I hope you all have a good Saturday.  Peace and Love from 302.

Day 51

It's Friday, I hope you all have had a good week and have a good weekend lined up.  I'm at Clinic waiting to see if I'll need blood, they were worried yesterday because I was a little low on my counts.  If I don't need blood I'll be here for just an hour, but if I do need blood I'll be here for another 2 hours.  Meanwhile, Robyn is home vacuuming and cleaning the apartment.  I can't be in the apartment when anyone vacuums and I'm not allowed to clean (one of the few limitations I don't mind).  

Robyn has been great, she keeps me very active, we walk 30 minutes a day and it might go up from there.  Another awesome thing is she has been helping me straighten out the medical bills and the insurance.  We came up with a system that should help me and we identified the bills that are actually due and which ones in my pile were duplicates or already paid.  I feel a lot better now, we still owe a lot of money but I'm hoping we can get payment plans set up.  The good news is once we pay we should be done for the year because we have already met our deductible.   

Anyway, enough about insurance.  Yesterday, I made it through a 30 minute walk and insurance billing without a nap.  Unfortunately, I puked after dinner, we thought we had found a medicine combo that works but it didn't last night.  We'll see what the nurses say today, I don't see a doctor today since I saw mine yesterday.  

Eric is coming home from Greenville today, it will be good to have him home.  Thanks to Robyn he'll have a clean apartment to come home to, which I know he'll appreciate.  Even though it's only been since Wednesday, I still miss him, he's my best friend and other half.  

I'm feeling good minus my issues with nausea and puking.  I'm hoping that will begin to fade away.  I know I'm getting stronger which feels good.  Two days ago I met another transplant patient about my age.  He was on day 83 and getting ready to go home.  It was so weird to hear the words "day 83" and "going home".  I told him I have Dr. Howritz, he then told me Howritz is good about sending people home once they are in their mid 80s, so let's hope this holds true.  

I'm trying to choke down my nasty liquid medicine, following about 6 pills, making my total for this morning: 8 pills & 5 ML of liquid nastiness.  I swear just taking the medicines can make you sick.  They tell me to take the liquid with fatty foods or ginger ale.  I don't like ginger ale so I'm constantly searching for fatty foods I can eat with the liquid.  This way the drug will absorb better in my body. Whatever they tell me to make it work best, I'll do, I want my lungs back to normal and I'm ready to be pulled off these drugs.  If I didn't have the daily IV, I could have a day off from clinic!  

In random news, we have learned that the maintenance men at the apartment are very nice and efficient.  We had a broken toilet, broken remote and parental controls on our cable.  Robyn and I walked up to the clubhouse to tell them all of this and to my surprise they jumped on it.  I didn't have to fill out any request forms or anything.  Not even 5 minutes after we got back to the apartment the maintenance guys knocked on our door!  The cable guy would come later but here they came two nice brothers who were very respectful, they took off their shoes, washed their hands and didn't come near me (infection/germ reasons).  When we realized our door wasn't staying closed and we needed our air filters to be changed they completed those tasks just like that.  We were impressed and expressed our happiness over their work.  Now they help us any time and say hello when we are on our walk.

I guess that's it for today.  I'm happy to be feeling good and strong, I'm not back to normal yet but I'm getting there, slowly but surely.  Thanks for all your love and support, I know it's been a while since we first started this blog, if you are still reading and keeping up with us, thank you.  It makes me feel very loved and supported.   Sometimes it takes the hard times to realize how wonderful life is, even with the hard times.  Peace out from the Duke Adult Bone Marrow Clinic!

Day 50

Hello everyone, I hope this Thursday has been good to you so far.  I just finished a little snack of strawberries and blueberries.  Not sure if I mentioned this but as of Sunday I wasn't allowed to eat berries, which broke my heart.  On Monday, Robyn and I went to the new patient class so she could learn about my transplant procedure and her job as a caregiver.  Martha the nurse who teaches the class told me she would rather I eat berries than keep loosing weight!  I was thrilled to hear that I could enjoy strawberries and blueberries again!

Not eating berries is part of the neutrapenic diet I'm on, but according to Martha they are getting ready to stop that since it's effectiveness has proven to be not that good.  I was thrilled because I miss my berries!  On that Monday night I gorged on strawberries, then of course I puked them up but they were worth getting sick.

Luckily, I did not puke again yesterday.  I shouldn't puke, considering I'm on three different nausea medications now.  Sometimes they make me feel a little loopy or sleepy but they do seem to stop the puking.  Today, at clinic, my weight showed I gained a pound, so everyone was excited.  I'm happy with just staying at my current weight, it's my goal weight anyway.

Now, Robyn and I are home getting ready to tackle our insurance bills.  We are going to track every payment that has been made because we fear we might have paid too much.  We have good insurance but they don't track where we are on reaching our deductible, so that's what I'm going to do.

Once we are done we'll go for the daily walk.  We are trying to add five minutes each day but it just depends on how I feel.  I'm definitely getting stronger and I can go without a nap if I have to.  Although I do love my naps.  :)  Skin is still very dark, thanks to my chemo burn or suntan as some people call it.  I've been feeling like the skin is going to start peeling as it's been very itchy and dry.  I feel like a freak cause my body is different colors, all different shades of tan, with my trunk being the darkest.  I've also noticed an increase in freckles both on my face and my body.  The doctors tell me it will fade or peel away in time, but I know the freckles will stay.

Anyway, I'm going to go dive into this insurance mess, wish me luck!  Love to you all from 302.  

Day 49

Today, we actually got out of clinic at like 11:00am, so early that we didn't have to pay for parking! I didn't need anything besides my daily medicine, bonus!  Since we had lots of time we went to Arby's for lunch which filled my craving.  Next we went to Sarah P. Duke Gardens which is close to the clinic and it's free.  We went for a thirty minute walk through the gardens, there were hills and Robyn kept the pace pretty fast so it was a good work out.

Now, we are back home and I'm just about to take a quick nap.  Eric is working a reseller show in Raleigh today and then he has to drive to Greenville to visit his account.  He won't be home until Friday evening.  So it's just us girls for a few days.  It's weird to see his stuff gone, he hasn't traveled recently but I'm glad he's able to.  He needs to do what he has to for work, that's why we have caregivers, like Robyn.  I really want to thank all of my caregivers, you help so much and give us the extra help we need, your work is greatly appreciated.

There isn't much to report in the health department.  Except that last night I didn't puke, I made it all day without puking!  This is very good since they are worried about me loosing more weight.   The doctors made me start taking three anti-nausea meds instead of just two.  What's one more medication anyway?!

In closing, I'll leave you with pics of our garden walk.  I hope your day is going well.  Much love from 302.  

Day 48

Wow, what a day, we were very busy.  First, we had clinic from 9:00 to 12:15.  While we were at clinic we learned that my doctors had set up an eye doctor appointment for me at 2:15.  Which was great because I have been a little concerned about the leakage in my left eye.

The Duke eye doctor did find the leakage and explained that my left eye is leaking blood.  It's not too close to my cornea so it shouldn't effect my vision.  The best thing she told me was that this is likely caused by my low platelets and that it will eventually fix itself.  I have to go back and see her in 4 weeks to see if it has begun to heal but until then I don't have to do anything unless my vision changes!

Now for the fun part of our day, we did some shopping!  I must thank Robyn Morgan and Mike Johnston as they treated me to an awesome sun-protective shirt, a hat, sun gloves and a walking stick all from REI.  Oh and how can I forget the cool walking belt that holds a water bottle, keys & phone or whatever I need.  It was awesome, since I know I need to be really careful about sun exposure because it's easier for me to develop cancer or graft vs host disease.  So I use 40+ sunscreen every day and now I have some clothes to wear while hiking or when I go to the beach.  You can't keep me out of the sun so I feel great knowing that I will be protected.  So thank you Robyn and Mike your gifts are greatly appreciated!

Finally, we went to the medical supply store where I bought a shower chair.  I have been taking baths every day because it's easier, that way I don't get my Hickman wet.  However, one of my nurses informed me that I shouldn't be taking baths and that I definitely need a shower chair.  So we found a shower chair which I will try out tonight.

Eric and I tested my new sun clothes on our walk after dinner, they are great!  They make me feel cool, I even included a picture so you can see!

Now we are relaxing and praying I don't puke tonight.  The last four days I've lost 2 lbs a day thanks to puking every night.  We are trying a different medicine combo so hopefully it will work.

Okay, that's it for me tonight.  The Biggest Loser is on and I feel like my blogs have been too long lately.  So good night everyone, from apartment 302.

Day 47

Well today has been a long day of doctors appointments and class.  First, we met with the lung doctor, they were never able to grow anything from my lung biopsy and still have no idea what this fungus in my lungs is.  What they do know is my lungs are getting better and they look clearer on the x-rays.  In a few weeks, I'll have another Cat Scan to make sure everything is really clear.

There was some thought of switching me off my medications which would be good since one is the IV drug, and one is what I call the 'nastiness'.  The only problem is my liver is a little irritated and a new drug could make the irritation worse.  In the end my main doctor, Dr. Horwitz decided not to mess with a good thing since my lungs are improving.  I was kind of bummed because I would like to get a day off from clinic which won't happen until I don't need the IV drug anymore.  Plus, the medicine I call the 'nastiness' is truly disgusting, it's a liquid that I have to take four times a day, it's been known to make me puke.  At least my lungs are getting better, that's what is most important.

Next we went to clinic where I only needed my lung IV medicine but we also stayed for the new patient class.  This way Robyn could hear all the facts that we were taught before we started treatment.  It was a good class for both of us, I asked some questions that I didn't think of before and Robyn asked some good questions as well.

We were at the clinic until about 3:00 but we got to meet with my doctor, nurse practitioner and take the class.  Once we left the clinic we went straight to the DMV.  Robyn, brought up a good question last night, why don't we have a handicapped pass for the car?  While we were at the clinic Robyn talked to the right people and we got approval and a doctors signature to apply for the temporary handicap pass.  So for $10 we were able to get two passes that are good until October.  It's only day 2 and Robyn has already come up with several ideas that we hadn't thought of!

Now, if only we could get our insurance to catch up with our payments and keep things straight, it's not easy keeping up with all the medical bills.  I swear they purposely confuse you in hopes of getting more money out of you.

Well that's it for today, I haven't had a walk or a nap yet so we'll see how the rest of the day goes. I hope you all have had a good start to the week.  Peace out, from 302.

Day 46

Happy Sunday, to you!  I just came back from a nice long walk with Eric and my cousin Robyn.  We picked her up around 2:30 grabbed some McDonald's and enjoyed catching up before leaving for our walk.  It's about 80 degrees out so it was a beautiful day to take a walk, and I made sure to wear lots of sunscreen and a hat.

Clinic took longer today because I needed magnesium, which I always seem to need.  I slept the whole time which was nice because I was feeling a little weak.  Eric was so good and did the grocery shopping while I got my treatment.

Tomorrow, I 'll see the infectious disease doctor to hopefully find out more about my lungs.  They feel a lot better today, they have been feeling like I had a life jacket strapped around them to tightly.  Now they just feel small, but they don't hurt, which is nice.

Well I think I'm going to take a quick nap before dinner, we are having tacos tonight so hopefully I'll keep them down.  For some reason I've been puking in the evening, not good since I keep loosing weight.

I hope you all have a wonderful Sunday.  I also want to say I'm so thankful that everyone of my family is okay after the tornado hit last night in Wichita.  I also say a prayer for those who were not as lucky, tornado's are not an easy thing to live through.  With that I'm signing off, love from 302.

Day 45

Today has been a tough day, Mom left and I am not feeling so hot.  It was so good having her here that it was hard to see her go.  We managed to do a little shopping before she left, I must give a huge THANK YOU to Mom and Mike (step dad) because they bought me prescription sunglasses!  I'm not able to wear contacts for about a year so it's so nice to have some sun glasses I can wear.  I feel like I can see again when we are outside!  Thank you so much, I've always wanted some prescription sunglasses, now I must protect them and make sure I don't loose them.

My clinic visit went well today, all my counts are up and I didn't need any extra products other than my  daily IV medicine.  Which was perfect, we were hoping we would get out of their quickly so we could go shopping for glasses.  The funny thing is when we were at Lenscrafters the girl that helped us recognized our last name and turns out she knows our cousin Jessica Pyjas who lives in Raleigh!  We have to get together with her now that I'm free to be out and about.  It's so funny to have someone recognize the name Pyjas.  I felt bad though because the girl kept wanting to talk and we didn't have much time.  Luckily, we made it to the airport just in time for Mom's flight.  By the time we had driven back to the Lenscrafters my new glasses were done!

Now Eric is taking good care of me, I might have over done it this morning but I got a lot of exercise.  He's such a wonderful husband, I'm so lucky to have him and I can't sing his praises enough.  With that, I'm signing off.  I hope you all are enjoying your weekend.  Love from apartment 302.

Day 44

It's a great day today, I feel good and I got some good news from the doctors.  My donor system has taken over my old immune system!  This is happening at the right time and the Doctors are happy with my progress.  This means my blood type will change to A- soon.  My chest x-ray came back and it looks clearer, less fluid than before.  I'll visit the infectious disease doctors on Monday, so hopefully they will have more good news for me.

Mom and I are having fun, we took two nice walks yesterday and we are about to go out again.  Unfortunately, she is leaving tomorrow, I'm so glad she came and it was good having her be the first care giver besides Eric, she did a great job.  Hopefully, tomorrow before she has to go we can find time to hit up a Lens crafters because I need new glasses.  I can't wear contacts for awhile, for risk of infections, so I'm hoping to get some prescription sunglasses and maybe another pair of regular glasses.  It would be so fun to get new glasses.  Plus, I miss having sunglasses.

I'm looking forward to see my cousin Robyn tomorrow, she's my next care giver.  I know we will have fun and she'll do great helping me out.  It's really kind of weird for me to need a care giver but there are some good reasons why.  For one, I can't drive because of the medicines I'm on.  Two, I can't prep, clean or cook food.  I can't clean the house, I can't be around when we vacuum.  All these restrictions so that I don't get sick.  Oh and the care giver is responsible for administering my medicines, all 14 of them.

I'm posting new pictures, finally!  Here are some great pictures, Buster, my meds and baby ducks we saw on our walk.  I hope you enjoy!   Much love from 302!

Day 43

It's back, my fabulous laptop is back!  The best part is we didn't have to pay a thing!  I only broke the ac adapter!  Finally, I can get back to blogging every day.  I felt so out of touch with everything.  Sure, I could use Eric's computer but I'm used to my laptop, I know exactly where everything is and the keys are familiar.  Anyway, I've been up and down the last week with both good days and bad.  Luckily, I've been in the excellent care of Eric and my Mom.  It's been so nice having Mom here, and it's even better to have her help with everything.  She keeps me company at the Clinic, even if I'm sleeping. She gets me everything I need and helps with the food and house work!  We are very blessed to have her come out and I'm very blessed that my Husband and Mom love and enjoy being around each other.

In health news, it's been interesting getting used to going to the Clinic every day - even Sunday! Some times it's not that bad, the shortest it can take is an hour, longer if I need more products, like blood or magnesium.  I chat with the Dr. or a Nurse Practitioner, they tell me my blood counts and other information from my daily blood draw.  Some times I just sleep, it's amazing how I can fall asleep so easily now.  I forget that I am on so many medicines that some may mix and make me feel kind of out of it, I guess that's why they won't let me drive.

Other than the annoyance of going to the Clinic daily, it's wonderful to be out of the hospital.  Mom and I just got back from a walk around the complex.  Actually, she just dropped me off and walked further.  It was so nice to get out, it was warm enough and it we just walked the side walk all around  the complex.  It's important for me to get out for a daily walk to build up my strength.  My first few days out of the hospital I could hardly walk, I had a tendency to fall.  Eric would get so mad at me for moving too quickly or not paying attention while standing up.  He gets so worried about me, but really takes good care of me.

I've discovered that I have quite a dark "chemo tan".  The skin on my trunk and legs has turned much darker and I have more freckles.  The doctor says that this skin will flake off and new skin will be revealed.  It's just like why I lost my hair, it turns unhealthy so it dies and falls out eventually new hair pushes the old dead hair out giving you new hair - which could be a different texture than before.  

My lungs are still tight and painful.  Not as bad as they were in the beginning, when they hurt all the time, now it's just when I breathe deep or become short of breathe.  They still don't know what is wrong with me but I have an appointment with Infectious Disease April 16th.  Maybe they will have some answers for me, although it is kind of cool baffling the doctors.  Besides all this I do feel better the only other thing to deal with is the occasional nausea or puking.  I just take things day by day and hope each day is going to be a good day.

Sorry for the extra long blog, I think I felt the need to make up for the lack of blogs recently.  Peace out my friends, it's good to be back.
Love from 302.

Day 40

Well this is my first visit at the clinic with my mom. She is learning how long these appointment's can last. Today I'll get two bags Of magnesium which will take two hrs to pump in me. After this we'll go back to our apartment and hopefully relaxing. Well I am getting tired now so I must say, peace out it's time for a siesta!

First Saturday of Freedom

Ah, Freedom, I will forever appreciate my right to make choices in my life.  So since I was discharged from the hospital Monday, I've spent every day at the clinic.  My appointments are usually pretty earlier which is nice.  Eric comes with me and works while I get my IV medicine, which takes about an hour.  They also check my vitals, my medical check list and my blood counts.  So you really never know how long you could be at the clinic.  The Clinic is really a day hospital that helps patients heal outside the hospital.  I definitely agree you feel better when you can be at home or with your loved one.  It's so fun for Eric and I to spend the days and nights together again.  He is doing a wonderful job of taking care or me, he handles all my meals and medicines plus, he is working full time.  It truly amazes me how he takes care of it all.  I sure am one blessed woman to have such an incredible husband.  

Tomorrow, Mom comes in town to take over the "care taker" role, give Eric a break.  I'm excited to see her and it will be nice to have her here for Easter.  Although, the weather hasn't been as nice.  It was like 85 now the lows are in the 30s!  Least I don't have to dress to impress.  I basically live in sweats but I add my awesome scarf from Kristina to spice it up a bit.  I always get compliments when I wear it, thanks girl!

Anyway, I'm still without a laptop, so bare with me on the consistency of the blog updates.  Again, I want to thank you Keith, Beatriz and Keifer for taking care of Buster, I know he is having a blast and I can't wait till it's safe to see him again!    With that I'm signing off, I'm thrilled to be out of the hospital and working hard to bring my strength back.  I still have the lung infection which they can't figure out but it's clearing up so my white cells are doing what they are supposed to!  Much love to you all, appreciate life even the days that aren't so ideal.  :)

Wednesday April, 4, 2012

I have been at home from the inpatient clinic hospital for 2 days!  It's so good to be out and about!  I never realized how quickly you loose muscle, when you spend multiple days in a row stuck in bed.  Now I'm walking outside, further than I have inside but I need to get my in door work out planned.   I need to start eating more and building muscle and strength.  I get winded if I push myself so I plan on walking laps while I receive my medication through IV.  It takes about an hour to get the medicine, which means that 7 days a week I'll stop the clinic to get my IV medication.  Or like today I needed blood along with my IV medicine.  Eric doesn't mind to stay up with me, he can use his wireless connection to keep up with his daily correspondence and business.  After time, we won't have to go every day or stay almost all day, it all depends on my daily blood stats.  

I'm just happy to be free and to be with Eric, I missed him so much when I was in the hospital.  All I have to say is I amazed by his daily support and actions.  He really is a proper care taker, plus he's working hard for Epson.  Eric cooks all our meals, and does all the cleaning.  Oh and top of that he manages all my medication, checking off times and type of medicine I'm due for.  I love him so much, and thank God brought us together.  That's it for today, Blogs might be few and far between since I broke my laptop.  Hopefully, it will be fixed soon and I'll be back to my daily blog schedule.  Much Love from 302. 

Day+ 35

It's been a long stay at Duke 42 days and +35 (post donor date)and today I am going home today, I am so ready to start outpaient care.  I still have  trouble with my lungs but the x-rays show improvement.  The Blog is going go be short today our goal is to be gone by 1:00pm.

Have a fantastic day! we are happy to be together and soon to be out  in public!  Much love from 9215