Christmas

We had a good Christmas. The kids got spoiled and Santa brought them everything their little minds could imagine. They have to put up with so much of my crap Dave and I can't help but spoil them on the holidays.

I have been going to therapy throughout the holidays just skipping Christmas eve and will stay home for Lee's birthday this week. Once the new year comes I will cut back to twice a week due to insurance limitations.

I have some more movement in my right leg and my therapist says I am making great progress. She still won't say if she thinks I will walk again - nobody will say that. Statistically people with my level of injury don't walk again. Hopefully my bodies tendency to buck the odds will do so in this case and actually work with me and not against me.

I need to follow up on a whole bunch of things; pet scan to see if the cancer is still at bay, immunizations, driving lessons, dentist. Everything in the new year.

I am still enjoying our holiday and need to get ready for Lee's 7th birthday. How did he get to be 7 already?

Getting lazy with this blog

I realize my posts are getting more infrequent as therapy drones on. Don't get me wrong I like therapy and get excited once I am there to see progress and possibly some new movement. But, you knew there was a but, it is just downright painful some mornings to get up a 6 a.m. let alone come home to do anything but crash before the kids get off the bus. I welcome my small breaks over the next couple of weeks.

Everyone knows that I am a huge Christmas decoration person; something that my chair and deadbeat legs don't seem to understand. Stringing lights and the wheelchair isn't a good match. Thankfully my dad decorated the outside and my mom decorated the tree while I got my Avastin drip. Don't even ask about the Avastin debacle on Monday. Let me just say it was an all day affair at Hopkins and I am not a happy camper on those days. Brings back memories of the transplant - yuck!

So as Dave was driving to NYC on yet another work trip we talked about how even though the house frustrates us to no end, Dave's travel is a big logistical nightmare now that I am in the chair, and we never seem to have time to ourselves we do need to be grateful. Grateful that Dave has a job in this crappy economy, grateful that our kids are healthy, we have a roof over our heads, and grateful that I am at home and not in the hospital. A reminder that God is good.

We do always have one happy place that puts all 5 of us at ease - West Virginia. My mom's cabin has become a second home. It is all one level, I get to sleep in a real bed, my chair fits through the bathroom door, Dave gets to sleep in, we take naps, read books, and don't stress about keeping the house tidy for showings. My mom built the kids a tree house and they love to hang out in the great outdoors. Or just play with toys and make forts inside -whatever their hearts desire.

Another year passes by

I turned 34 on Saturday. My dad and sister were in town to help us celebrate at my mom's house. It was a very nice birthday and it was wonderful to see my dad. He drove me up to therapy on Friday and got to see me in action and see me lift my left ankle.

My therapist wants to put me in leg braces this week since standing comes before walking I guess I need to learn to stand again. I was able to lift myself pretty much into a standing position on Friday.

I didn't attend therapy today to attend the funeral of the daughter of an old coworker of mine. The pastor did a nice job and there was a lot of support in the church to help the grieving family. The pastor gave me another reminder to live for the moment. A lesson I feel like god has personally designated for me some days.

Heather walking

Dan took video on his phone of me "walking" - short and sweet but very cool. Thanks Dan!

Thanksgiving, standing, and walking

We had a wonderful Thanksgiving and obviously we gave thanks to our health and happiness. Although I am going on 3 years of dealing with my medical drama I can't let a Thanksgiving go by without being happy to be alive.

Since I have begun rehab at KKI I have had more movement in my toes and recently movement in my left ankle. My therapy includes strength training, electrical stimulation while biking, standing in the stander (a machine that helps hold me up) and yesterday we did the gait walker which imitates me walking with the help of the therapists. I am worn out after therapy but it is good to see forward progress.

I am dealing with new insurance woes and fighting the recent denial of my next Avastin treatment. My docs are appealing and doing everything they can to get the new insurance to cover the treatments. Hopefully we will get some good news soon. I have a lot of faith in these treatments giving me an extra edge to get me walking again.

My dad is coming to town this weekend and I hope to get the Christmas tree up. I love Christmas and the kids are getting excited. Alex sees Santa and says HO HO HO. Too cute.

International Center for Spinal Cord Injury

One week down and about 50 more to go? My first week at KKI was good. My goal is to walk again one day and they are going to try to make it happen. I do about 2 hours of strength training and stretching. Then we do electrical stimulation on my legs in conjunction with a motorized bike. The goal is to regain my muscle mass in my legs so once I start to walk again I have something there to help me. Once I pass a bone density test they will start putting me in the stander. It will be a weird sensation since I haven't stood in over 3 months.

We are trying to schedule my next avastin treatment for this Friday. Just waiting on the new insurance to give the green light.

The house still won't sell and we are beginning to think about what it will take to make our place work. The list is very long but if this is where we are meant to be then so be it.

It is amazing the holiday's are upon us. Time flys by when your having fun.

Date is set for therapy!

Finally my insurance woes are all cleared up and they set the date for rehab up in Baltimore. I will start next Monday and go M/W/F each week for 12 weeks. They will re-evaluate me after 12 weeks and then adjust the plan accordingly. Mind you I won't be walking in 12 weeks but that is the cycle in which the evaluate folks.

We may have found a house out near Dave's parents. I am excited but cautiously optimistic since we can't seem to sell our place. We are giving it one more try this weekend with a new reduced price and open house. If we don't get an offer before the holidays we are taking it off the market and trying again in the spring. Maintaining a super pristine house with 3 kids and a lady in a wheelchair is not an easy task.

We are headed to my mom's cabin to get a break and let the house be shown to its hearts content. The price adjustment has already lead to a showing tomorrow morning.

Even if the house never sells we both recognize that we are blessed to have a home, 3 healthy kids, I am not in the hospital, and Dave is gainfully employed. Although our house is a pain in the butt it could be a lot worse.

Have a great weekend.

Insurance

As many of you know Dave's company was bought out by a larger tree care company. Due to this our insurance changed on Nov. 1. We were excited since it should be better coverage, no more referrals, and allow me to do tests/blood work up at Hopkins. However we had a huge scare the other night when the coordinator for the new rehab facility emailed saying there was a pre-existing waiting period of 1 year. Dave and I freaked out! We resolved the issue (knock on wood) last night but for a day my mind was reeling on what this could do to us if they didn't waive the clause. Considering everything about me is a pre-existing condition something like this would bankrupt us. I had been rather indifferent about the entire health care coverage issues being knocked around by the presidential candidates. I still believe it will be very difficult to implement a system to include everyone but boy do I see the need for it now. If Dave was to ever lose his job we would be screwed.

On the brighter side I think my new wheelchair will arrive by my birthday; possibly before Thanksgiving but that is a stretch. You don't even want to get me started on the entire wheelchair saga. Let me just say that it is disgusting how some wheelchair dealers treat the disabled. It is amazing that some can take advantage of people in difficult situations.

So we hit the pavement again this weekend to look for a house. Still no luck but maybe something will happen - you never can tell.

Voted

So I took the oldest two z's with me to vote today. Navigating a busy intersection, "standing" in line, and waiting took an hour and a half. Surprising since we live in a state that is definitely blue. The wait time I experienced was short compared to what others had in the morning from what people were saying in line.

I am constantly amazed at how many barriers there are for people in wheelchairs. I was crossing our main street and since my loner chair sucks I couldn't do a wheelie to get over the curb. A nice man in a car stopped to help me but if he hadn't I would have had to wheel up hill the long way around in oncoming traffic. Also the church we vote at (my church) has the line in the upper parking lot...since I am a member I rang the bell and they let me take the elevator. If I didn't know this existed I would have had to wheel all the way around - total pain. Lastly the voting booth guy let someone else in front of me use the accessible machine. Once he saw me he asked if I could just stand to vote - DUH I am in a wheelchair because I cannot stand! So we had to wait even longer to get to the accessible machine.

Life can be so frustrating in a wheelchair. You run across great people that totally help and then without a doubt you run across someone that has no clue. When I do walk again (pray to god) I will not forget what this chair has taught...I have learned more than anyone can imagine.

New outlook

I had my first appointment at Kennedy Krieger Spinal Cord Institute last week. They have a completely different mind set from my former rehab - simply they believe I will walk again. Granted they are not making any promises but they are going to work with me towards that common goal. It might take a year but they are hopeful that I will ditch the wheelchair one day. The doctor I meet with was very knowledgeable and light years ahead of the doctor I had at the inpatient rehab. I should start the program in mid November, will go 3 times a week, for 3 hours each day. They say it is like boot camp and I will be exhausted at the end of the day. Okay with me as long as I am working towards something positive.

Dave and I both went to the school for Lee and Charlotte's Halloween parade and parties. Lee was some Star Wars character, Charlotte was Hanna Montana, and Alex was Thomas. All of which they are completely obsessed with at the moment. The cousins and neighbors came over Halloween night for pizza and then headed out to trick or treat. They got a ton of good candy not like the crap I would pick up in my youth.

Dave and I spent the entire weekend looking for a house and still nothing that excites us. We are pretty much searching all over MD at this point. The housing situation continues to frustrate me beyond belief. If we don't find something and sell before Thanksgiving we are going to pull the house off the market for the holidays and put it back on in the spring.

Home again, home again

I apologize for the delay in posting since I have been home. We had some Internet connectivity issues that Dan has since resolved.

Many have asked what it is like to be at home - it is hard. Obviously a split level house and a wheelchair just don't get along. I am sleeping on our pull out couch on the main level and washing up in the kitchen. Those things don't bother me as much as needing to be dependent on others to get stuff done. I was such an independent person that asking for help is a hard pill to swallow.

The chair that I have been provided as a loner until my final chair arrives sucks big time! My order for the final chair is still waiting on insurance approval and I don't expect it to arrive in the 6 week time frame I was initially given.

So we are trying to make do with the living situation, sell our home, and find another to purchase. Of course selling a house during this economic climate is hard not to mention finding a home that meets our needs to purchase is even harder. We are looking everywhere and anywhere. We will most likely have to move the kids from their school; something that we don't want to do but might just not have a choice.

Being home is a mixture of good and bad. I love being around the kids and they definitely like me here as well. We just need to find a better living situation ASAP.

Going home!

I am so excited - I get to go home tomorrow! Michele picks me up at 11 AM and I am a free women.

I went home both days over the weekend and did come to the realization that the transition to home will be hard but not something that I can't overcome. I will have physical therapy and occupational therapy folks coming to the house most likely starting early next week. My therapist here at rehab said they will be very helpful in making the house work for the time being. Our goal is still to move as soon as possible. Not sure if everyone knows but the original house we made an offer on fell through - it had serious issues that we became aware of during the home inspection. So we are looking for a new place and still trying to sell ours. Not the best of times to be selling a home but we have had a lot of traffic over the weekends and are hopeful it won't take too long. I think the bigger challenge might be finding a place that meets our needs.

A bigger and exciting development that just happened this evening is I moved my right toe. It is a small movement but still movement! I have not been able to move my right toe for some time. I am hoping this is still more positive news that things are turning around.



So

Light bulb moment!

So my body must have turned on some light bulb and told my muscles to wake up because I am feeling a lot stronger today. It is that or simply my pure motivation to get the hell out of here. I bumped up stairs yesterday, worked my butt off in the gym, and today started getting back in my chair from the floor (with the assistance of some foam blocks).

So my therapist are releasing me Thursday - 6 days to be exact! I am going on a home pass Saturday and Sunday so this time should fly by.

Once home an occupational therapist and physical therapist will come out and help me adjust to getting around the house. Then I will do out patient rehab for who knows how long.

With all the stretching, getting dressed, working out, and undressed the days just fly by. I wonder when my full time job will not include my health.

Have a great weekend.

Strength not too bad

I have lost some trunk strength and it is harder to bump up the stairs then before. But overall I don't think I lost too much of my newly acquired skills.

At this point I think the risks of me getting sick at rehab outweigh the benefits of the therapy. The cleanliness conditions (or lack there of) here and medical staff incompetence just does not mix well with my complex medical history and whacked out immune system. Additionally, Dave and I agree that it is just time for me to be home. He really feels like the kids just need my presence and I don't blame him/them. So I am lobbying hard today to be out of this place by next Friday at the very latest. Pretty much I think I will just check myself out if they put up a fuss.

My insurance allows therapist to come to the home and then once they feel like I am beyond that need I move to out patient therapy in Baltimore. This set up will allow for me to see the kids and protect myself from infections better.

I will miss my exceptional physical/occupational/recreational therapists here but I just can't risk going back into the hospital with another infection.

Back at rehab

I am back at rehab. I totally feel like I am going in circles and not managing to land back home in the process. I hope that this rehab stay lasts only a week or two at the most. They are evaluating me again and we will see what they have to say on Monday when things get going around here - the weekends are always pretty quite. I just need to get my strength back and move on.

I did manage to score a Sunday pass and will get to see the kids, mom, and Michele for the day. Michele says mom made chocolate chip cookies - it's the little things in life.

Praise God

I had my MRI yesterday and the results are back and they are wonderful! My neurologist said the Avastin is working. I was so excited to hear him- so much I think I most definitely missed everything he said. Essentially things are shrinking and we are finally getting somewhere with all this neurological stuff. He really does have hope that I will walk again one day - that hope is contagious for sure. He said he has not lost hope for my legs!!!!

So my doc has to figure out the best timing for the next dose of Avastin and how much the next round should be. We are also going to abandon the high dose steroids to see if the Avastin is doing the trick or if it is the combination of the two drugs. I welcome a break from steroids. They have puffed out my face like a chipmunk and my weight is out of control. Medically speaking he is worried about my bone density since I am already osteopenic and quite possibly have osteoporosis - both of which are not ideal for when I go to walk again some day.

So I thank god for giving me this glorious day, my wonderful family, and renewed hope. I am living proof that releasing yourself into god's hands deliverers great rewards. I have Alex and now the possibility to walk again one day.

I am headed back to physical therapy rehab tomorrow morning. Hopefully for one or two weeks. I am excited just to be near home so I can see the kids more often. Plus I am ready to regain the strength I lost from this pneumonia.

What a great day. Life is good.

Back at Hopkins on my way to rehab

I am feeling better. I officially have pneumonia and they actually pin pointed the exact type so I am on the right meds to get rid of it. I am feeling better and will get out of here today or tomorrow and go back to rehab.

I am waiting to see if they can squeeze in my MRI before I leave so we know if the Avastin is working - hopefully it happens but I am not holding my breath.

Depending on the upcoming MRI results I will do another round of Avastin (if the results are positive) and high dose steroids. If the results are bad who knows what the plan will be and I just pray to god we don't have to go there.

This past week and a half has been a nightmare. Me physically breaking down, the stress of the move, and me not seeing much of the little z's. Hopefully the bad is behind us and things will start looking up from here on out.

Thanks again to everyone that came over to help Dave and our family deal with the house. I am forever grateful.

Thank you to everyone who helped Heather and Dave this week!

Hello Everyone,

This is Michele, Heather's sister. I spoke with Heather yesterday and she asked me to post an update. Don't worry, she is well enough to update herself, but no longer has access to a computer.

Heather is back at Johns Hopkins. Early this week she became ill and was unable to participate in rehab. Initially the physician at the rehab hospital thought she had a sinus infection. On Friday she went to the ER of Washington hospital and it turns out that instead she has pneumonia. After this diagnosis she was transferred to Johns Hopkins where the physicians confirmed this diagnosis.

For those of you who may be confused, as I was, my understanding is that the drug Heather was taking to try and stop the continuation of her paralysis to her upper body, Avastin, is essentially a form of chemotherapy. Given this, after Heather takes Avastin, her immune system weakens and leaves her open to contracting things like pneumonia. Given the state of her immune system, she has been transferred to the hyper-sterile ward in Hopkins that she called home during her stem cell transplant. Her physicians at Johns Hopkins are meeting to determine what the next steps are. According to my mother, they are hoping to treat her for the pneumonia this week and PERHAPS transfer her back to the rehab hospital later this week.

As you can imagine, this has been yet another dip on the roller-coaster that is Heather's life. As per usual, however, Heather and Dave continue to exhibit enormous amounts of emotional and psychological strength. In fact, the main reason Heather asked me to update this blog was because during all of this Heather and Dave have been thinking most about all of the people that have lent a helping hand this week. Of course my Mom and Dan and Louise Zeitlin have been helping Heather and Dave virtually around the clock with the house and the kids. Paul and Nikki Zeitlin also coordinated a brigade of volunteers to help recruit volunteer help to pack of Heather's house this week. We are all family, so of course our support is always there and unconditional.

Beyond this, what has REALLY touched Heather is the amount of help from her friends and the families of those friends who have stopped by the house this week in response to Paul and Nikki's request for help. Heather asked me to express her deepest gratitude to all of you who have helped over the last week to pack up boxes at Heather's house and who are marshaling resources to ease their transition to their new, wheel-chair friendly home. As a result of your help, Heather and Dave's house will go on the market this week. This absolutely would not have happened without you (she said there were too many to name!). So, on behalf of our entire family, thank you and God bless you.

I am on my way down to Maryland to help out for the month of October and will continue to provide updates when Heather can not.

Michele

Another week

The good news. Time is actually going by rather quickly in rehab. I was able to get into the pool and do some exercises this week. They put weights on my legs so I can actually stand. I am unable to stand on land - this is an issue with Lee. He just keeps asking if I will stand again and it breaks my heart to tell him no. I remind him I am still here so we are lucky.

My big goal before I leave is to go from the ground and then back into my wheelchair unassisted. It requires a ton of upper body strength. They simulated a fall on Friday but I fear the day it actually happens. They assure me it will happen so I just need to work through the fear.

More good news - we found a one level house in our neighborhood and in the kids school district. We hope to have out house on the market ASAP and move into the new place as soon as possible. This is going to require a ton of work on our part and anyone out there that is local and wants to pitch in we are ready to accept your offer! Dave will need whatever help we can get to pack up stuff.

Some minor bumps/bad news - my counts are dropping, I was sick Saturday, and the chemo side effects are setting in. I am back on the anti nausea meds and getting some drugs for mouth sores. Overall I just want to maintain my strength so I can learn as much as possible in rehab and go home. I am wondering however if my counts go much farther south how feasible rehab will be for me. Simply put being in the hospital setting with crappy counts is a bad mix. I have a conference with my doc and therapist tomorrow so hopefully we can sort this all out.

I do think the Avastin must be working if it is effecting me physically so it is not totally bad news that my counts are in the crapper. I just keep praying that the progression has stopped and I only have to worry about being a paraplegic. I see the people in this place that are quads and I am amazed at what they accomplish.....I just can't imagine how hard it is to overcome.

Freedom pass

My trip up to Baltimore was very long. Mom and I were gone from about 7 a.m. to 7 p.m. The avastin was uneventful and I don't even need pre meds for nausea. That is good news!

Friday night Dave brought the kids over for pizza and a movie. We are trying to make our life as normal as possible and setting up a routine to see one another so the kids don't freak out.

Saturday Dave came in the morning with the kids and we were able to use the playground here. It is all accessible for the kid patients so Alex had a ball. The family stuck around for my occupational therapy and they are very open in including them which is wonderful. I did an endurance test in my chair and had to wheel over the the other hospital, maneuver the gift shop, and then back. It was a solid hour of wheeling my chair around. If I would have know I would have let Dave push me more when the kids were here in the morning. I wrapped up the day with weight training and then early bed.



Sunday the doctors granted me a day pass home. We took the kids to a museum and then back to the house for the remainder of the day. Since our house is a split I could only access the first floor, kitchen, living room and outside driveway. It was wonderful just to be home and see the kids, eat real food, and hang out. I got back to the hospital late and tired but well worth seeing my kids and dave.

Continue to pray the Avastin works and that my symptoms stay at bay. Thanks to everyone for the kind notes, cards, flowers, and prayers.

Living at rehab.....

I am trying to establish a routine and it seems to be getting better. I wake early to begin the day with an hour of undress/bathroom/wash/dress routine. I successfully put on my shoes yesterday and today. Sounds like a little deal but it is huge for me.

Then I am off to physical therapy, group therapy with other paraplegics, lunch, recreational therapy, occupational therapy, and finally end the day in the gym lifting weights. I have a pass to eat my lunch in the cafeteria and the food is so much better. I managed the salad bar on my own but ran out of steam for soup. You don't realize how high those soup holder things are until you are in a chair. Let alone it is just a challenge working around a cafeteria with a tray, other people, and the wheelchair. Finally end the day back in my room with dinner and another long bedtime routine.

Tomorrow is my second round of Avastin at Hopkins and mom and I leave bright and early. Wish me luck and pray for no complications.

Frustrated

Today I learned that the rehab folks would like to release me in October! I was totally bummed out since I thought I was a short stay. I understand that the longer I am here the stronger I will get but an entire month away from Dave and the little z's breaks my heart. On top of this crappy news my symptoms are worse and my so called good leg I cannot wiggle like I used too. It makes physical therapy so hard because my condition is a moving target. My therapist is wonderful and said we will just keep moving forward, hope for the best, and prepare for the worst. Dave is helping me focus on what I can control (my upper body) for now and try not to get down.

They gave me a different chair to try out for a couple days. I continue to progress to a better and better chair. This one helps me sit up straight and not slouch. Since my symptoms effect my lower abs, balance and sitting up-right is a workout in itself. Even taking the measurements for my final go home chair was a workout.

My doc has the game plan to get the second dose of Avastin on Thursday. I get a day trip to Baltimore so that will be nice. My therapist also said they will ask the docs to allow me to go home every Sunday to test run real life and see the family. It will probably take every ounce of will power to not just stay home for good.

I also get a roomie tonight - sucks. I will have to step up the sleeping drugs and ipod. Maybe I am a bitch but I just don't feel like chit chat with strangers these days.

I will get through this - this shall pass.

Prayers are working!!

I heard from my spectacular neurologist and it appears that my insurance has initially approved the Avastin treatments! I read the email, called Dave, and just cried. I know our family was willing to find the money no matter what but this is such a relief to me I cannot thank god enough.

My doc is warning me that insurance has been known to change their minds but for right now we are approved and moving forward. I will get my second Avastin treatment next week. They will put me back in the ambulance, drive me up to Baltimore, drug me up, and return me back to rehab.

Of course I continue to pray that the Avastin actually works for me but this is such a good sign, gives me renewed hope, confirmation of my faith, and finally possibly a turn around for me and this diagnosis.

So THANK YOU to everyone that has reached out to me, our family, prayed, sent good thoughts, vibes or whatever it is you do! It is working I can just feel it.

My temporary home - rehab

I am settled into my rehabilitation center in DC. I was transferred late in the day Thursday and arrived a bit rattled and scared but mom saved the day and talked me down. I have a semi private room next the the window with no roomie just yet but I am sure that will change.

The doctors, occupational therapist, and physical therapist evaluated me yesterday and got a baseline down for the record. This should help us see if there is any improvement or deterioration.

I will essentially be doing 3 hours a day of therapy in addition to my hourly morning and nighttime routines. It seriously takes me an hour to bath, use the restroom, and get dressed. It is part time therapy on Saturday and Sundays we get off. The facility of course is very accessible and kid friendly. They allow all the little z's in my room and just about everywhere on campus. The three of them came to visit last night and stirred up the place.

They have excellent resources for getting a better wheelchair, hand controls in my car, assist with metro access rides, and will do whatever they can to help me get disability. Insurance has approved a 14 day stay so we will see what I can get done it that time. I just want my independence back.

Thanks for the thoughts and prayers. I am still praying that my hands don't get paralyzed. I am off my high does steroids so it always freaks me out what can happen. Just need to continue
to think positive.

Still no move

I am still in Baltimore waiting to transfer to DC for rehab hospital. I broke down, let it out, made some waves and moved on. I am fairly certain I will go tomorrow but worse case scenario I should be moved Friday. Being a type A personality with no tolerance for bull shit is not the recipe for success in a hospital. At least the darn doctor that said I would leave yesterday came in today and apologized for getting my hopes up. I think all medical professionals need to do a mandatory stay in the hospital so they get it.

Taking charge of my situation (with the help of Dave and my good doctor) got me another visit from physical therapy here. The therapist gave me exercises to do and a game plan on what to work on while I am killing time. I finally feel like I am doing something. Since I have numbness and lost of sensation in my lower abdomen I need to strengthen my muscles to regain my balance. It is scary since I feel like I am going to fall flat on my face but I just need to keep trying.

I also got off my duff, in my chair, grabbed my wallet, and got myself a good cup of coffee downstairs. I only spilled half of it trying to make it outside to enjoy the fresh air but it was so worth the spill. I also took a trip downstairs again tonight before dinner to get more fresh air. Why don't they make windows that open in hospitals?

I am doing better and my mental health has had a bounce with the help of Dave, my wonderful doctor, and faith.

Keep the prayers coming. Maybe the Avastin will kick in overnight and I can get up and walk out of here!!!! Worth the prayers even if it is a long shot.

Get me out of here!!!!

So I have come to the end of my rope with my stay at Hopkins Bayview Medical Campus. The nurses are great, the doctors top notch, but I just need some fresh air and change of scenery. My roomie is getting on my last neve and I couldn't have survived this long without my headphones and music. How much time can a human sit in a room (share it no less) without fresh air and go insane. I need to remind myself of the transplant days and get some perspective.

So by this Wednesday, pray to god, I will be transported to the National Rehabilitation Hospital in Washington DC. It is only about 20 minutes from home and my stay should last about a week. From what I hear they do about 3 hrs of physical therapy daily to teach me how to deal with my new mobility. I think they have resources to come to the house and check out what could help, get me a better wheelchair, and have some shrinks on hand in case I am getting nuts. As long as I can have some freedom with my chair and get fresh air hopefully I will stay sane.

There is just so much hurricane and Sarah Palin coverage once can watch on TV. I need freedom!!!!

Life in a wheelchair

I thought I would post about what life is really like for people with spinal cord injuries, paralysis, or loss of mobility. Let me just say I was SO naive prior to all of this happening.

The cane and walker were so manageable and how I dream of life with them and not a chair. But since the chair is what I have to deal with then so be it. You have no clue how heavy dead weight legs are until you have to use your own upper body strength to move them everywhere. I cannot even barely move them in bed, bend them on my own, wiggle my toes....just dead weight. .

Also I guess in my own stupidity, I thought that if you were in a chair that obviously meant that you couldn't feel your legs. Well I can feel my legs, they provide plenty of pain, spasms, but they just won't move. I don't know which is more frustrating. Steroids and some pain meds are helping me with the pain issue in the hospital. We will have to re-address that once I get discharged since the steroids will be lower dosages.

Something more personal that I had never even considered when looking at everyday people in wheelchairs is how do they use the facilities. With my condition, any many spinal cord injury people, I am unable to control my bladder. I retain my urine and it is amazing how much my bladder holds without me knowing since I have loss of sensation. I can measure up to about 6-9 coke cans of fluid. I must catheterize to empty my bladder or I get urinary tract infections. Of course I cannot feel any of the early symptoms so left unattended it would cause kidney infection. The bowels I still have control of but you can imagine getting to the bathroom is a royal pain.

I have realized that there are many helpful people out there willing to open a door or give me hand. To my amazement there are still very rude folks that just turn a blind eye to someone in need. I pray I raise my kids better than that.

My upper body strength is getting better each day and I am learning the tricks of the trade to get from my bed, chair, and back again. All of which is a work out in itself.

If I could pass along any unsolicited advise to anyone that reads this board - if you have the ability to get up a go the do it. You never know when it could be taken from you. I guess it's that same old thing I have been trying to remind myself; don't take today for granted because you don't know what tomorrow will bring.

Fighting for my arms/hands

I spoke to the doctors yesterday and explained I will do ANYTHING to keep my arms and hands from paralysis. We will keep me going on the high dose steroids then move forward with the 2nd round of avastin - not even waiting to scan first to see if it is working......just go ahead and do it.

The only other thing that keeps getting tossed around is doing a biopsy to make certain this isn't cancer. If it were there is nothing they can do to treat it and only do radiation to buy me time. The biopsy could also permanently paralyze me from the waist down. I am not going there, not doing the biopsy, and keeping hope alive that this can all turn itself around one day.

So we are taking a $20 K gamble on avastin right now. I just have to believe it will work. Only time will tell.

Thank you to everyone for the support and prayers.

Back in the hospital

So I am back up in Baltimore. The doctors have started the 1 gram of steroids again and will continue until Tuesday. I will then be transferred to in patient rehab so I can learn how to transfer my self from bed, to the chair, to the bathroom, etc.....

What I need right now is everyone to pray that this does not take my hands and arms from me. Unfortunately today they said they see signs that it is effecting my right hand. I am waiting to see the doctors to plead to give me everything they have to save my hands. I will do whatever it takes at this point. I can handle the chair and have accepted it. I just don't know how quickly I would bounce back from loosing my arms and hands.

Thanks for your support.

When will it kick in?

I am waiting for the Avastin to kick in. I think I have googled every possible combination of the question "how long will it take" and I can't find an answer.

In the meantime my symptoms are worsening. I am pretty much in a wheelchair and can walk only a few steps with my walker. Someone has to be around when I go to move from the bed to my wheelchair or if I need to shower.

Dave and I are seriously thinking about moving since he is going to break his back trying to help me down the stairs. The stairs are my enemy right now and going up/down is very painful.

So when will this medicine start working???? I pray it begins to work soon.

Another stay at the hospital

My symptoms worsened over last weekend and I was admitted to Hopkins on Monday. They preformed another MRI and the lesions have grown. My doctor suggested taking Avastin, a drug that blocks blood vessel growth. The drug has been used in patients that had radiation treatments for brain cancer. It seems effective in the brain cancer patients and they even show improvement. I took my first dose in the hospital and was discharged. We wait 2 weeks, do another MRI, and hopefully it has worked.

The only pitfall with this drug is the cost ($10K) a dose and we don't know if insurance is going to cover it. If it works I might need 6 doses - we really don't know since I am the first person ever to take this drug for radiation myelitis.

Meanwhile I am finding life frustrating at home. Our house is a split level and not made for a person that needs a walker and wheelchair. I am supposed to limit my trips up and down the stairs so I am spending a lot of time in my bedroom then coming down at night for dinner.

Thank god my sister was in town all week while I was at the hospital - helping with the kids. Dave is wonderful, helpful, and very understanding. Things are difficult right now but hopefully we can get beyond this stuff soon and life will settle back down.

Bikes, scooters, and cozy coupe

Lee learned how to ride a bike this weekend. Charlotte got a scooter (a belated bday gift from Nana) and is cruising up and down the driveway. Alex got an early bday present - a little tyke's cozy couple - and calls it his bike. He is a bit confused but having a blast.

So all in all the kids are definitely enjoying the new asphalt driveway. I think they spend more time on the side of the house then out back these days. Finally they have benefited from my new handicap - we upgraded the driveway so I wouldn't crack my neck.

We got some pictures on one of the kids cameras. I will post soon.

More oxygen

So I am still doing the oxygen treatments. To my utter confusion my lung function tests were better even though I still cough and wheez. So my doc is ordering a ct which will most likely happen early next week. Hopefully this will shed some light on what is going on inside my lungs. But I am not getting my hopes up too high since recently the medical field is more baffled by me and my problems then they are helpful.

Not much to report since I basically drag my sorry legs to treatment, suck up some oxygen, and then come back home. Michele was in town for the majority of the week so we went out to dinner with mom a couple times and drove around......but that has been the big excitement of the week. Oh yeah I got to go to Baltimore to do my lung function test - good times.

So possibly you sense my annoyance with all this medical crap. It has been over 2 years! It is wearing thin to say the least.

Dave and I are thinking we might do a family trip for Alex's big 2 yr old bday. We haven't really been together much since PR and that was back in May. Now if someone could please tell my lungs and legs to get their butt in gear so I can enjoy a weekend away....wouldn't it be nice if it were that easy.

Carrie out there?

This post is in reply to Carrie that published a comment to my blog. I would love to get in touch and share my experience with the radiation myelitis - can you send me your email address? I am at heatherzeitlin@yahoo.com.

Thanks!

Might be my last day in the tank

I have completed 9 oxygen treatments as of today with a total of 30 scheduled.

After 4 treatments my neurologist ordered a pulmonary function test (pft) because the technician said my lungs were wheezy. My neurologist tracked down my pulmonologist (whom I love and has since moved to Atlanta) and they discussed the results. My lung doc was not happy to hear that my lungs are slipping backwards. They decided to let me try the tank for the remainder of the week and then have another pft on Monday. If they have gotten any worse they are stopping the oxygen treatments and will start up cytoxan.

From what the doctors say there is such a thing as too much oxygen. And in my case all this O2 could possibly be aggravating my BOOP. My neurologist does not want to in any way cause damage to my lungs and I have to agree......lugging around an oxygen tank with my cane and foot drag is a recipe for disaster.

Maybe my lungs will pull through on Monday, maybe not, I am rather impartial. I have come to accept the fact that all these treatments have side effects - there is no free lunch. Hopefully we can find something that works on my neuro issues and doesn't harm any of my major organs.


So in the meantime I have been scouring the Internet for any information on radiation myelitis. There is just about nothing out there. I emailed the doctor I consulted with at NIH to see if he knew of any studies or doctors working on this - nope. I seriously do not know why I always end up in that small percentage of the population that gets crap like this, or my lung issues, liver issues, pregnant with cancer..........jeez! I just want to be the typical patient for once.

Oxygen

I began the oxygen treatments on Monday. My first session was cut short since my symptoms started to flare and my overactive bladder made me get out of the tube to pee. Today I managed to hang on the entire 2 1/2 hours but barely....even with meds the docs prescribed to help. Hopefully tomorrow will be better and I can stay in for the duration without feeling like I am going to pee my pants. My doctor said we will give this treatment 1 week and then assess the situation and see if the cytoxan is a better option.

My mobility sucks big time. Walking is very unsteady for me and it is best for me to be wheeled around when going long distances. I still cannot drive and it is painful to bend, reach, and pick up stuff.

We have hired full time help for the kids in the home since I am gone durining the morning hours getting treatments and then wiped out from all the walking afterwards. Essentially I just can't keep up anymore.

Today is Charlotte Marie's big 5 year old birthday. We had a little pre celebration at my mom's cabin over the weekend since my mom is out of town today. She got a princess boom box and a Hannah Montana cd. We are officially in Hannah Montana mode and Charlotte wants to be a rock star just like her!

I was recalling earlier that this time last year I was hospitalized for Charlotte's birthday. So I guess thing are crappy for me physically but at least I get to be home.

News from Hopkins

I had an appointment with my doc at Hopkins on Friday to follow up on my incident in AZ. My lesions have not grown nor have they shrunk. He also does not think we have hit the plateau needed to stop the progression of my symptoms.......obviously since I need assistance to walk right now.

We have the following options for reaching the plateau needed:

1. Take vitamin E - harmless and helps some people
2. Coumadin treatment - a blood thinner taken with the idea that there are possible tiny blood clots in my spine causing this problem. Risk is bleeding and I am a HUGE fall risk.
3. Hyperbaric oxygen treatments - the idea here is that my spine is being deprived o2. Risk is my lung condition from before (BOOP) and would I not be a good candidate. Also this treatment could put stress on my heart; an organ I have managed not to mess with yet.
4. Cytoxan - a chemo drug I have taking in the past that is sort of stepping the steroids up a notch to knock out any inflammation if that is the cause. The drawback with this treatment is my sensitive liver.

So my doctor is consulting with all the other docs to see what is best and hopefully get started with a treatment early this week. Pretty much he laid it out that there is not a lot of research for radiation myltetits. We don't know what is causing the flare ups (need for O2, inflammation, blood clots) and there is no simple test to do a check see. Pretty much we need to start trying treatments and hopefully something will work. He stressed again that this is a long road and that none of these treatments are going to have me wakeing up the next day feeling better.

I am in somewhat uncharted territory and it is reminiscent of the pregnant with cancer feeling. You just have to take the leap and have faith.

"If you are going through hell, keep going."

Words of wisdom from Winston Churchill for times filled with extreme frustration.

Based on your track record, I know that you will get through this Heather.

Love you - Michele

Radiation myelitis

It seems that my condition might be a bit confusing to people so I am posting to shed light on what exactly is wrong with me. I have radiation myelitis.

It is defined as: damage to a portion of the spinal cord from exposure to x-rays or other high-energy radiation; most often affects the cervical segments; depending on their time of onset and persistence, two forms are recognized: the early type which appears within 6 months following irradiation and may be transient, and the late, delayed type, which appears more than 6 months after radiation and is typically chronic and progressive.

The damage to my spinal cord is exactly where they did my rads. Since my diagnosis and recent set back I have had several MRI scans and steroid infusions. To date my scans and treatment have stopped the progression of my damage however it has not improved my situation.

Exactly how this damage to my spinal cord messes up my mobility and such can be better explained by the Transverse Myelitis Association at http://www.myelitis.org/. My myelitis isn't transverse but is very similar and I am given much the same treatment options and use their discussion boards as a resource for my symptoms and on the look out for drugs that could help.

I often get asked if I am better.......I feel the need to explain that this condition will not just get better overnight after a hospital stay or drip of drugs. My neurologist has told me that it could take several years to see improvements. So like the cancer I guess I am in this for the long haul. At this point I pray that my condition doesn't get worse and at some point gets better. Right now I need a cane to walk, I drag my right foot, the stairs are very difficult to maneuver, I have to sit to dress myself since I can barely bend over and I can't drive since I can hardly lift my right foot.

I am frustrated and emotionally spent these past few days. I need time to adjust to my new normal and move on with life. My priority is always the little z's and making sure my disabilities don't impact their lives. They are great, helpful, and mindful of my new issues. I just wish they didn't have to deal with all this bs.

Pictures from AZ

I am posting some pictures from the AZ trip. The kids had a blast with their aunts, uncles, grandparents, grand uncles/aunts, cousins.......

So this symbol totally sums up my past week's experience and life for the foreseeable future. Let me just say camping in the remote wilderness is not a good idea if you have neurological issues.

My trip to AZ caused my existing scars to flare up and I was falling and almost unable to walk without assistance. I ended up in the local hospital for a 2 day stay to confirm that it was just a flare up of my existing condition, given some meds, and released in time to fly home. Thank god my sister was on the trip with us - she took care of the kids, me, and rearranged her flight to help me on the plane.

What is next? I have to see my doctor this week and get some more drugs - fun fun since of course it is steroids. I HATE steroids!!!!! I need to find a permanent caregiver for the kids in our house since I can't drive right now or keep up with Alex. We need to get the house up to speed with more handrails and stuff....navigating the stairs is dangerous.

My life is totally upside down right now and my head spins when I try to figure it all out. Balancing my health issues, taking care of the kids, and making sure Dave stays gainfully employed is stressful to say the least.

I am bummed out the most that my independence is gone and that I am unable to care for my own children. I need some time to snap out of this rut but I am sure I will bounce back soon. I just need to remind myself that although my life is different it is still life after all.

Great news!

Still no evidence of disease to report - awesome news. I am thrilled since this last test freaked me out because of all those other findings by the neurologist.

The PET is indicating that my thyroid is toast just as they suspected would happen due to radiation. I will follow up soon but am excited to think there is a reason I am gaining all this darn weight.

Me and the little z's are headed to my dads to camp and hang out for the 4th with family. Enjoy your holiday!

Another PET

Going up for another PET scan today. I won't know the results until next Thursday since my doc is out of the office. The waiting is the worst but hopefully it is good news.

I will post with the results as soon as I have them.

Father's Day

I made this video for Dave as a father's day present. I promised my dad I would post so he could see the kids. Enjoy!

Update

Remind me never to have a meeting on Friday 13th again! Not because we had awful results but we had to wait FOREVER which is torture when you are waiting to find out if your cancer is back. Anyway it was somewhat no news......my doctor needs to scan my slides in to do some exact measurements but from just looking at it he does not think it is cancer. In the meantime we wait for these exact measurements to verify and I also have a PET scan in the next couple weeks. The PET would say for sure if the cancer is back. I got some meds for my pain due to the crap on my spine and he is hooking me up with physical therapy to help my walking. Actually he said a lot of people are very successful with the physical therapy and can walk normal again - that would be nice.

So more watching and more waiting which is the story of my life. I am completely mentally spent when it comes to these tests and waiting on the results. I am not big on patience nor do I do well with the unknown. I just need to continue to put my faith in gods hands and pray that he is going to take care of me.

I will keep everyone up to date on the medical stuff once I know more myself.

Enjoy the weekend and have a wonderful fathers day!

Back from Vieques

We are back from Vieques, PR and had a fabulous time. While I was away there was a glitch in my test so it has been postponed until this Friday. I will then meet with the doctor the following Friday for results. I am not happy that it is Friday the 13th but it is the soonest he can see me so I won't reschedule.
Here are some of my favorite pictures from the trip.






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Good weekend

We had a good weekend and I thought I would share some pictures of the kids. Lee is turning into a teenager right before my eyes. He bought himself a skateboard at our church yard sale and is begging me for an ipod.

Thanks for all the emails and posts. I appreciate everyones kind words and I am just positive that this MRI in June is gonna confrim that I am still cancer free.

This is a post I have been dragging my feet to type. My neurologist phoned last week with some unsettling news. I had taken my spinal tap slides up to Hopkins so they could do their own lab work and unfortunately the ever diligent Hopkins staff found signal abnormality in my T6 region. What does this mean? My neurologist said in 90% of the population they would not suspect anything but in my case (history of primary refractory cancer) they have to follow up to rule out cancer. How do they do this? Since I am currently on steroids for my transverse myelitis they need to get me completely off the steroids, wait, then do an MRI. I guess the steroids could skew any test results so it is best to wait. The MRI will be the first week of June.

So all in all it looks like I have a 50/50 chance that the Hodgkin's is back and in my bones. Dave and I are thinking positive and keeping hope alive that it is not cancer and that for once I am just like the rest of the population and this is nothing to be concerned about. Also, my next PET scan is scheduled for June too so we are just taking this in stride - just another scan to confirm that I am in remission.

I know I can handle anything that is thrown my way - I just pray that I only have to deal with these pain/mobility issues and not cancer again.

If you have the time these next couple of weeks keep the thoughts, prayers, good vibes coming - NO MORE CANCER for Heather please! Thank you very much.

Mom's birthday party

Finally put together some video from my mom's 60th birthday party in December. I am posting it here in case my link to the video didn't email out properly.

Feeling the buzz

Coming down from these drugs and doing the steroid taper just gives me the craziest buzz. I am sort of in la la land and I guess it is a throw back to my youthful pre little z days. It is a little tricky navigating the world buzzed with 3 kids under the age of 6 but thankfully Dave is back home and can make sure Alex doesn't crack his head open.

My symptoms are in full force again without my SOL-MEDROL but I am managing. I guess the trick is to just make sure they don't get worse. I am putting a follow up to see the doctors on my to do list for next week.

In the meantime life goes on. We are busy playing in our backyard, planting flowers, and Dave is attempting to build a tree house for the kids. The summer is fast approaching and we are all super excited to hang out and enjoy the outdoors.

Life is good.

Solu-Medrol

Oh how do I love Solu-Medrol! As I posted before I finished up my 5th course on Saturday. Sunday (without meds) my symptoms were back in full force and these past couple days have been bad with weakness, burning and numbness. The doctors have prescribed 3 more days of Solu-Medrol and I am such a happier camper. As I sit in the comfort of my own home and watch the medicine drip I feel better. This stuff rocks.

My home nurse said some people do a 3-5 day course every month - forever. Not sure it that is the best possible solution and I am making time to follow up with the docs to see what else is out there. I am happy to know that there is at least a drug that works. Hopefully we can maybe find something a little less potent to take over the long haul but in the meantime I will continue my love affair with solu-medrol.

I wonder what my post in 3 days will be coming down from this - probably cursing it and wanting more. Oh well I guess I can only take things a day at a time.

A week of the big meds - not that bad

The home nurse from Hopkins came out last week and hooked me up with the IV steroids. I took them Tues. - Sat. in the comfort of my own home with little Charlotte Marie as my nurse. She says she wants to be a nurse now but only for me - how cute. The drugs definitely improved the burning sensation I get when I overwork my legs. I still have the leg weakness and it is slow moving for me to get around. Good news is the symptoms didn't get any worse this week so hopefully the drugs did their trick and told my body to stop with this nonsense.

I am done with the high dose and back on just oral steroids for the next week or so. Amazingly enough I thought I would go ballistic with that much medicine in my system or get terribly depressed but none of that happened. This new condition of mine has actually forced me to slow down, stop being such a type A nut case, and help me live in the moment. The only side effect that bugs me is the puffy, water retention, weight gain. I have essentially been on steroids now since the fall and my stomach is growing. I just keep saying let it go - let it go - at least you are alive.........I would still like to fit in my old clothes though.

Alex is actually being sent back to his old daycare provider this past week and upcoming week to help keep him safe and sound. Our best sitter ever is also coming during some weeknights to help me with the kids. These people are the biggest lifesavers and I am so thankful that I have a support system here.

We celebrated Dave's 34th birthday which I couldn't have pulled it of without Dan and Louise. They are such a huge support and I thank my stars they are so close and so kind. Dave had a great day and the kids had fun playing outside in the weather.

So I continue to count my blessings - my family rocks! We love our Aunt Michele (my lifeline), are gearing up to visit my Dad in AZ this summer, Gramms (as the kids call my mom these days) is bringing us dinner today, and Uncle Paul let the older 2 spend the night last night with their cousins.

Life is good - maybe even better in slow motion.

Update from JHU

I visited the neurologist at Hopkins and have a game plan - finally!

The doctor thinks my condition is caused from either the radiation or some sort of autoimmune thing. They are leaning towards radiation causing everything but are still waiting for some tests to rule out the autoimmune option.

In the meantime I will go on high dose IV steroids for 5 days (1000 mg per day). This will hopefully stop the progression of all my symptoms. The best case scenario after the steroids is that my body thinks it has plateaued and then we can work over time (talking years) to regain almost all my mobility. I will not get back to 100% but close to it.

If it does turn out to be the autoimmune thing they have treatments for that as well and same scenario.... that I will over time get back to almost 100%.

So Dave and I are ecstatic for the good news! My worst case scenario fears of a wheel chair are gone and I see the light at the end of the tunnel. Yes this is going to be a journey and will take time but just knowing that we are on the road to a better me is great.

Next week I might be a bit of a nut on the steroids. I am also dealing with these symptoms and trying to manage the little z's - always a challenge. But all in all still just flying high that they keep saying the don't think it's cancer. Life is good.

Have a wonderful weekend.

Some test results

I got back the test results ruling out cancer once and for all. Always great news. The test for MS is still out and might take some time since they send it to Mayo.

I will see my local doctor tomorrow and then the Hopkins doctors on Friday.

I am feeling better and more mobile the farther away from that pesky spinal tap I am. I am up and about for a couple hours then back to sitting or I get this nasty headache and back pain.

Not much to report and just praying for the best outcome this Friday. The no cancer prayer vibes worked magic....now I just need some no wheelchair prayers.

Hospital visit

I had hoped to lay low after my wonderful clean PET scan results and take a break from the blogging world but it's not my luck I guess. I have been having some nerve issues in my lower extremities that has caused me to fall and put a strain on my mobility. A long story short my issues put me in the hospital last week to have an MRI and spinal tap.

The neurologists have ruled out infection from the spinal fluid. My oncologist is telling me in no way does Hodgkin's go to the nervous system so I should be free and clear of cancer recurrence (whew) but they are spinning the cells anyway to double check. There is talk of MS but in all honesty I think the doctors just don't know. I have a consultation next Friday with a neurologist at Hopkins and hopefully we can get to the bottom of all this soon. Thank god for a caring oncologist at Hopkins who hooks me up with all these great specialists. I also ran into my old onc. leaving the hospital and she said she would so some research for me.

In the meantime I am back on steroids and in some pain from the spinal tap. It is difficult for me to move around but hopefully that will go away sooner rather than later and I can once again be chasing Alex around.

Louise, my mom, Dave, and Michele are all here helping out - true lifesavers once again.
I will post something once I have any news. Still just thankful to be alive and cancer free. I can handle a little less mobility as long as it's not life threatening. Boy your outlook on things change after you have gotten off the cancer roller coaster.

Thank god

I had my 3 month PET scan and great results - no evidence of disease. Awesome news and I am so thankful to be alive.

Enjoy your spring!

Charlotte Marie

She takes such a good picture. My boys have no interest in holding still for the camera but Charlotte will do it any time.

all is quite and calm

Happy to report that everything is nice, quite, and calm. Usually the opposite happens when Dave is away for a long period of time but not this trip. Maybe we have broken the spell (knock on wood). My health is good, the finger is getting better, the kids are all well, and Alex slept through the night last night!

I got a good new picture of Maple and updated her slot on the right toolbar. She is such a photogenic dog. Also added this larger print since the small one just doesn't do my 80 + lb princess justice.

Next week Alex and I go to Philly for his pregnant with cancer study and I have my next scan.

Lee's movie

I am posting a movie I made for Lee of some of his pictures. He got a camera for xmas and likes to take a ton of pictures that I upload every 300 or so....yes he takes that many. This movie gives you some insight into what he is doing with his camera.

What next?

After my posting on Wednesday I spent the evening sick (praying to the porcelain god) and fearful I had caught another round of the flu. Lucky me it was only my antibiotics giving me grief and the doctor has since switched them. Hopefully I am on the road to getting rid of this infection. I can no longer smell or taste so it would be nice to have those 2 senses returned to me soon.

Lee came down with a fever and cold so I kept him home Friday. He is feeling better but has passed along whatever he has to Dave. Dave is hoping to get better in time to catch his flight to CA for a week. We are both just praying it is not the flu and just a cold.

So really I don't think much could happen next (knock on wood). After Dave and Lee getting sick we will all have had some form of something this winter.....I am so ready for spring!

good grief!

Yesterday involved 2 doctor's appointments for me....first to confirm with my ENT that I have a sinus infection. He doesn't think (that I had assumed) my infection is just back because I am off the steroids. However it is a lovely side effect from my sickness over presidents day weekend. Supposedly viral infections can linger and turn into other such nonsense! How many times must I pay the price for my obvious poor judgement last Valentine's day - exposing myself to every germ out there. So another round of meds ordered by my ENT. I must say once again that I LOVE my ENT. He got to meet Alex for the first time yesterday. Without this doctor finding my cancer who knows what would have happened. I am getting off track.

Next (unscheduled) doctor's trip yesterday was to my regular doc which I do not have anything nice to say and will leave it at that. However I had to make a run to her office after shutting (yep not just slamming) my finger in the truck door. Dave is still wondering how I managed to do it - I blame it on seriously low energy and lack of good sleep. So they think I sprained it but not broken. And oh yeah don't use the finger (on my right hand) to lift anything. Please I have 3 children. And by the way get an x ray to make sure it isn't broken....sure in all my spare time.

I am done with doctors for the week and will get the x ray once Dave starts to holler and the thing turns blue. Otherwise I am steering clear of the white coats before the next round of appointments is upon me.

Alex and I have been visiting Grandma this week to help her recover from her surgery. I get be the nurse and not just patient for once. Dave is heading out to CA this weekend for a week long trip. Not much else to write plus I need to lay off the gimp finger - what a dumb ass I am.

Lungs look good

Music to my ears - my lungs look good. The doctor isn't putting me back on steroids and everything sounds great. So I need to watch for symptoms since there is a 20% chance it can come back. But in the meantime I am free of meds....well almost. My sinus infection is coming back so my doc is helping me with that until my ENT appointment next week. Hopefully the sinus infection clears up quick and I am a healthy woman.

My next PET scan is coming soon. Where does the time go?

the new favorite picture of the z's

Flu?

Supposedly the flu is going around....wish I had heard that before I managed to expose my self and get sick! I took the kids up to CT to visit aunt Michele for what looked like an action packed weekend. Visions of trips to the beach by her house, the aquarium, see Nana (dave's Grandma) and go into the city to buy toys at the biggest toy store. Everything started out great then Saturday morning Charlotte and I were hit with sickness. Poor girl was soooo excited to go see her Aunt and was sooo disappointed to have to stay in bed all weekend. I guess the positive is I got a lot of close personal time with Char. Not exactly the one on one time I was searching for but hey - its still counts! I have realized with Alex getting older the challenge with having the 3 kids is giving them enough attention and one on one time; but that is talk for a parenting blog I suppose.

Thank god my sister is the BEST big sis in the entire world and drove back to MD with me to help me out this week. Yep surprise surprise Dave is traveling. I have an appointment tomorrow with my lung doc so she can watch the kido's. Poor doctor is getting to see me in crappy shape and with a list of drug requests. I should get some more anti nausea meds (who wants to suffer), my counts must be shot because I am getting mouth sores (fun fun) and could use some valtrex, and my back is killing me from lifting the littlest z and I want pain meds! I was asking Michele how I made it through all that chemo and transplant and she reminded me I was heavily medicated - yep and I need to make sure my meds are fully stocked. Winter is not over yet and I have managed to get this throwing up sickness twice already. I think I need to resort back to holing up in my house until all the bugs settle down.

Amongst all this excitement Dave's brother had a baby boy born on Valentine's day. There seems to be a lot of Feb. birthdays. Why do family's always have baby’s bunched up?

So looking forward to getting better and hopefully a gold star for lung function tomorrow. Will post any updates soon.

My Obama baby

Alex and I went to the Obama rally here in MD today. Alex was such a trooper and hung out for such a long time waiting on the big man. The crowd began to get really loud, doing the wave, and cheering. Then Obama came onto the stage and the crowd went wild. It was at this moment I realized that Alex LOVED the crowd and I think he thought they were cheering for him. He was waving his arms and was utterly joyful. I told him maybe someday he could fill a stadium but today wasn't it. Then in typical Alex fashion he went from cutie pie to little devil and we had to leave.

Walking away I was obviously moved by the speech (what I got to hear that is) and the enthusiasm of the crowd. But to be honest I was just thankful that I could attend. I have come a long way from being exiled to my home, banished from my own kids, and holed up in my bedroom.

Life is good - thank god.

a good family picture

life with alex

10 random tid bits about the littlest z.......

1. he is obsessed with the vacuum. he actually enjoys it when i clean and is starting to run to the vacuum and try to stick his fingers in it.
2. he loves his feet. he takes his shoes and socks off all the time. i could sit for hours and play little piggy and the kid would be in heaven.
3. he dances at the drop of a hat. he even dances to my ringtones on the cell phone. his latest dance move is a stevie wonder type sway.
4. he will randomly try to do the splits.
5. the boy loves a bath and understands now when i tell him to get undressed.
6. like all men he is obsessed with his penis.
7. at times i am convinced he loves maple more than me.
8. the only word he says consistently is "more" - such the baby
9. he has taken to throwing his sippy cup out of his crib when he is finished. something charlotte, his new roommate, doesn't appreciate at 6 a.m.
10. he is the true italian out of all the kids - he can eat more pasta with sauce than the others.

Hate this disease - cancer sucks in a big way. A women that I discovered on a blog lost her fight to hodgkins. A reminder that this is in no way shape or form the "good" cancer. I really want to meet someone that agrees with that statement.

I need to pull out the old cancer is my bitch t shirt tommorow. Feeling the need to give the disease my middle finger.

No news is good news

I have no new medical news to report and that is good news for me! I am almost done with my steroids (again) and the cough seems to be staying away. Okay coughing just a bit but Lex did have a bug so maybe that is it. So send your prayers my way come Thursday - I will be trying to kick the steroid habit again and hopefully this time it takes.

We have actually been hanging out as a complete family unit lately since Dave was home for a whole 2 weeks straight. He leaves again tomorow and the travel grinds on again. But it was nice while it lasted. Lee is doing really well in school, Charlotte is aspiring to be a cheerleader (I think she could be Michele's kid), and Alex is adorable but the WORST sleeper in the entire baby world. Come on already - almost 18 months and still waking up at night!

Lot's of photo opps coming up this weekend - hopefully I will remember my camera and get some new pictures of the little z's out to everyone.

Lung scan results

My lung doc called and pretty much said the ct scan of my lungs don't show evidence of anything. Could mean the steroids are working, maybe I don't have BOOP, or that the local doc didn't know what she was looking. He wants me to bring the slides to my next visit so he can interpret them himself - typical and I already have them. So I continue to decrease the steroids and see if the cough comes back. Hopefully it doesn't this time and I can get rid of the roids for good. If not oh well - at this point I don't care anymore. I just want to stay on the healthy side and have no more set backs. If that means I stay on meds for a bit longer then so be it.

Alex and I are having fun hanging out at home. He is getting more vocal but not saying many words. He says ma, ba (ball), da (dad or dog), and more. He is sharing a room with Charlotte now and Lee has his own room. Moving the rooms was a pain but it forced a big clean up and things seem more spacious for the time being. Until the kids clutter everything up again.

Hopefully winter is quick this year - there is only so much indoor stuff to do with a toddler.

+365

Today is the 1 year anniversary for my transplant. A year ago today I really was in a fight for my life. I was determined to get better and return to a normalcy or as I said a carefree life in my post a year ago today. Since I have learned that there is no going back but just "keep moving forward" (to quote Meet the Robinsons). My life has been forever changed by this illness and in a good way. I don't take as much shit for granted, I still try to live in the moment and succeed some days, and I am learning to roll with the punches.

I am healthy today - okay just some minor lung stuff to wrap up - but really in such a better spot then before. Those bags of cells gave me back time to hang out with my kids, get to know Alex, and be with my family. A lot packed into some little bags and a drip.

So thank you god for giving me my life so I could have those lovely cells and allowing me another year to enjoy them.

CT tommorow

I finally got my CT scheduled for tomorrow. The insurance is becoming more of a pain in the ass since I am no longer a special transplant patient. Don't get me wrong I do NOT want to be back in that group but come on already it shouldn't take 4 days to schedule a simple scan.

I am worried about the side effects from these steroids. I am watching my sugar intake more since I am fearful about diabetes. I think the doc is more worried about my breathing than I am since he called and asked today how it was going.

Dave flew in Friday night and out again Sunday morning so we all got to see a glimpse of him on Saturday. He did get to see my cousin's new baby in OR yesterday - a bonus to all his travels. A picture of the new parents.

The kids are doing good. I have finally figured out Alex's sleep schedule. Whenever he decides to sleep through the night either Charlotte, Lee, or Maple don't. Last night he slept soundly while I was up from 1 AM - 4 AM with Charlotte. I have officially given up thinking I will ever get a good nights sleep - it is over rated anyway.