This is real life. A great story.

Still kicking!

noreply@blogger.com (Heather) — Wed, 13 Jan 2016 02:22:00 +0000

Hi! For those who might check this page and wondering about me and the family. I've decide not to blog here anymore because I want to keep it as is, including the introduction. Hopefully I will have the courage Monday to read all of that again and maybe write a book. I'm on Facebook as Heather Warren Cape. I'm updating my medical info on my go fund me page. I continue to have medical issues and mounting medical bills. Even if you can't donate, you can sign up for updates and please please share through Facebook , emails, or print it out. You can always get in touch with me at Heather.cape@yahoo.com. Thank you all for reading this blog. You helped me make it through. I still have a long ways to go. God bless you and your family.

A hippie getting a new hip

noreply@blogger.com (Heather) — Mon, 12 Jan 2015 16:06:00 +0000

Hello all,
It's been a long time since I have wrote a blog. I have several excuses such as not being able to stare at a computer for a long time, not having much feeling in my right two fingers, adding more and more doctors to my lists, changes in medicines, surgeries, and just living life more and more. In truth though I think it has been more about my emotional state over the last year. I always try to blog when I'm in a more or less positive or at least neutral mood, but it seemed like every time I would think of writing something else would come along and knock me down making me not want to share the bad with good. I have always aimed to be as transparent in my writing even more so now that I know how many people from all over the world have read and been helped by my blog. I also felt and still do feel alone in my condition. Not that I would expect or want someone to go through as much as I have and still be living, but as humans we find comfort the most from others who have have empathy and not only sympathy. By feeling this way and not feeling comfortable with my usual long rants with misspelling and lots of dots, I avoided the thing that helped me the most, writing and sharing my story, being there as a support for others going through a BMT and beyond, sharing how the Lord continues to lead and guide me, and getting more people aware that signing up to be a bone marrow donor does not mean they are going to actually cut you open to get it.
I have been just strong enough, subborn enough, and helped enough for me to be able to enjoy so many experiences over the last year. See I knew this right total hip replacement was going to have to happen sooner or later to be able to live my life, I just had to jump through some hoops to get it approved. The surgery is today and after all I have been through you would think it would be a walk in the park and a year ago I probably would not be feeling this way. I am glad that I have not had to be inpatient for more than a day or two at a time. I got so used to regular hospital stays, I had it down to an art, with even a checklist my husband made.
The hoops I had to jump through was getting my eye better, they are somewhat but have a lot of issues with vision and had a failed cataract surgery but they made drops from my blood, weird, and that has helped with the burning. I also had to get surgery on my ulna nerved which proved to be a more difficult recovery than I thought so the left one is on hold for now. I had my big GVHD (graft versus host disease) last Feb and still recovering from it with continued skin issues, eyes, but my mouth is better and good thing cause I have to get used to my new teeth. I'm doing great with the top but not really the bottom. The experiences that I have been able to enjoy have been vital to my state of mind. Concerts,being in my sisters wedding church, yoga, seeing friends and family, being able to do a little more for myself, the joy I get from having the most wonderful dogs, traveling to Gatlinburg with Jonathan's family, birthday parties, and amazing trip to Sea World and Disney World over Christmas, unforgettable trip with Evalyn to the hostel, seeing my cuz on his break from boot camp, being with Jonathan and Evalyn, people blessing us in so many ways, from rides, sewing, dog care, food, love, support, prayers and much more. But the thing that has held me together and continues to give me hope in my faith.
As my hip become worse and I spent more and more time not being able to do anything but talk on phone (which I don't like very much) and listening to sermons online, and praying more than I ever have in my life. I shared with my small group that being in this state I have really been able to fill my cup with the love of the Lord and know that he has a plan to use the continued overflow to help others. But in the meantime and in the thick of it I went though some very depressing times, and medication changes and at one point given false hope that I could be on a medication that would help me get off the steroids, Evalyn being at school all day, not being able to do house work due to pain, risk of falling, or chronic fatigue, not being able to exercise to help the fatigue, and just dealing with the crap like paperwork that keeps having to be filled out over and over, and honestly difficult times that are too personal tor the world to read just year, all of this together I believe could have made me bitter, more depressed, and at one time I just wanted to give up. Hitting wall after wall, breaking my first bone, my toe, itching all the time, side effects of meds, all I have been though, who would judged me for wanting to right? Luckily I made the choice that I have come this far and needed to seek God. Not being able to read or get on the computer much, I found listening to online sermons.
As a family we kinda have three different churches, our small group that we have been in for five years, the Vineyard where we have met the most wonderful people who I love so much, not just because of all the support, but who they are. The people have been so sweet and caring and for once in a long time I realized there where still Jesus followers that really followed him and served others and not just for show. I still have a lot of healing to do with some of my bad church experiences, which leads me too the online messages I listen to the most and they actually have messages called "My bad church experience" Then there is Athens Church, an partner church of North Point Community Church, where I love the organization, the style of teaching , and possible small groups that we may look into.So as I said not being able to do much but lay here, I started listening to messages off of the Vineyard site as well as North Point and all their partner churches. I found myself craving more and more of the word of God and messages that inspire, teach, and for goodness sake interesting, non judgmental, as well as transparency from the speakers. This may sound awful, but i grew up in church from eight years old and up and if I could just walk up and give a sermon on the chosen topic and verses just as well as the person speaker, well I hate to say it, but I feel like it is a waste of time. Not judging or saying others are not enjoying it, just not for me. I despise waste, and wasting time is my least favorite, especially with all I have been through, but everyone should live like they would if they knew they could die at anytime. It takes so much time and effort for me to go anywhere and know I'm going to pay for it the next day I have to choose wisely. I love how adding history, being explained the Greek words and thoughts that have been lost in translation, real people sharing life together for better or for worse, and feeling for sure that who ever is speaking has searched, worked, and prayed over the message, and share personal stories that many times are hidden in fear of judgment and keeping up the appearance that when you trust in the Lord, you life with suddenly be perfect and bad things wont happen to good people. Well we all know that is not true and the biggest reason why I feel that after seeing so many leaders fail, hypocrites that have too much pride to ask for help, and those that are asked either say they will or dont, or don't do it out of love for the person. Church, real church, the way Jesus intended, should be first, a group of believers, not just a place, where people can come in their most broken state and not feel they have to "get there act together" before someone will be willing to show the love of the Lord with patience, not trying to force feed the ABC's of accepting Christ. The bible says we work out our salvation, so many people have prayed the little magic prayer and then left alone to feel that for some reason the magic didn't work for them, and then they leave the church, and I hate to say it, didn't seem to be missed, cause most churches want there people to keep it together. Ok.. I could soap box that one for a while. I don't have much time today cause I got to pack and go to Atlanta to spend the night and I'm going to eat with family and then ride the ferris wheel downtown, which is one of thing on my increasing bucket list, everyone should have one. So back to the point.
I came upon a series of messages from the church North Point called "In the Meantime" which has really helped me to deal with the "why me" the "what if:" and "what now" that at some point everyone asked. It's always seem that God had a purpose through my Cancer and recovery because I naturally love to talk to people and seemed to have something about me that people want to share how they feel, even when I didn't want to hear, ha ha. I know that Lord has lead me though hell and back and back a few more times, but there I was able to rise above to help spead the word about people becoming a bone marrow donor, raised money, met wonderful people that I would have never known and not to mention all the changes in myself. I listened to the eight messages three times... yes I do have short term memory loss, but I just had to digest every word of it. I went on to listen to other sermons and even ones that inspired me to rethink how I felt about the old testament. No longer did it not bore me, it was interesting, and useful to apply to my life.
I have a mountain to clime right now. To get through this surgery and the long and painful recovery and seeking what the Lord has for me on the other side. And that is where some fear comes in... I have gotten my hopes up so many times that I could do the things I wanted and needed to do only to have to deal with something else. There is so much I want to do, to be a part or, to help others, be a better wife and mother, and give God the glory for it all.
Due to common risks with surgeries I just have to say that if I don't wake up for some reasons words cannot describe the how much I am blessed to have had so many opportunities, knowing love on certain levels, choosing to be a follower of Christ and I do expect all of you that been there for us to continue to be. We are so lucky so have so much family and friends and I couldn't even name them for fear I would miss someone.

Picture blog Early 2014

noreply@blogger.com (Heather) — Tue, 30 Dec 2014 22:42:00 +0000

Evalyn in a Texas tree Christmas Day!

Evalyn likes to have what she calls, "lay down party", her guest of honor, Abby.

We are barely able to fit into the recliner together anymore but we manage.

My aunt Lisa gave me this beautiful bracelet, one of the few that acually fit.

Prettied up for her Dec dance recital. Wait till you see the video. People stopped us
at the place they held it as well as the pizza place saying that she was their favorite!

Me after a fall with a concusion and Evalyn said this lady bug hat would help.

My hospital away from hospital.

On the way to the hostel in the forest in April got a hotel on the way down.

She wore herself out everyday at the hostel and slept so well with no fuss!

She loved the turtle room

This is her first coolage. She did it all on her own with glue. Hes, it's for sale.

I had like 20 babysitters at the hostel. Not that she needed it. She would just walk out of the room and say I'm going to the fire pit, or can I go to the garden with so and so, and everyone was so impressed with her behavior. Only once did someone come tell me thatshe was not listensing to them...pretty good I say.

Yep Naked as a jay bird. Not a care in the world. How I wish we were all so innocent. Forgive me Evalyn... I won't post anymore naked pics... I guess three and a half should be the end of that. But just so you know the pharse naked as a jay bird made me think jay walking meant streaking across road.

My aunt Susan and Uncle Fred from Texas . The vists this spring were due to my Granny passing but always great to se a Warren. But don't ever wait on one cause when waiting my Granny would say " I'll beleive it when I see the whites of their eyes" Miss you Granny.

Our Abby Girl that we adopted a year or so ago before Chloe past. They said that she would never learn to play. Well I thought I would always be skinny too. She is a joy.. an itchy, dominant, snoring licking, joy.

A very rare date iindeed. We had the place to ourselves and played music from our Iphone.

This girl can spot a glower, the smallest feather, the cutest acorn and anything else. She is like her mommy and Corynne, it does have to be gold to be a treasure. She has her little shelves in her room and we just combined our feather collection. This is one of her favorite dresses.

Hissy my parents cat... a rare half way I mike like you you you dog person.

Pictures from the botanical gargens with Susan and Fred.

Seeing my girl Corynne is always a treat, A surprise run in on a beautiful day and hear her sweet voice call my name, a true blessing. This young lady has it going on, with a great choices in her friends, an intership atUGA this fall, and her loving nature, I know God has great things planned for her!

More pics from the hostel in the forest. She loves it as much as I do and we were suppose to come home after three days. Then 3 turned into four

The glass room at the hostel.

Loves her Indian dress from Grandma Carol.

My main man Dr. Khoury and his nurse.

Medical Update " And the answer is....what do I not have."

noreply@blogger.com (Heather) — Sat, 07 Jun 2014 20:06:00 +0000

FYI... writing this with eyes closed and edited it with one eye open and seeing double...Yes, I did say I was going to update the introduction of the blog because it really needs updating and the blog needs some organization, but I have forgotten how to edit that part and haven't asked for help yet... I also said I would post about all the wonderful things that that happened with beautiful pics and I have acually managed to get them off the camera, which I had to find. But I just watched like 5 episodes of mob wives in the middle of the night, weired because I say I hate shows like that. The music is kinda cool and maybe it made my drama not look so bad. I pretty sure I'm not going to have FBI agents arrest my husband at 5am or knock one of my girlfriends upside the head. That saying... I should be sleeping, but sleep has been even harder the last six months or so because of not being on the med routine I was on, and was working, until I had the whole IV thing start up in November. I'm in pain. What was working thatI felt comfortable with and I could sleep on conteracted with those new meds and so I have been up and down.
I told, and shared some gross pics , in the last medical update, the GVHD attack I had on my skin,, mouth, and eyes, which I am still dealing with. Now I had to start another med for the GVHD which is messing with the last newest med and just has made me feel worse. I'm acually typing with my eyes closed right now because I can't see well enough to type and will have to edit on more sleep. Ha but even my editing needs editing. I just hope I'm keeping my fingers where they need to be so I can read this later.
So the most recent medical news is relatively positive. I'm getting my picc line out this week and have stopped two of the medications that I started in november. Glad to stop the IV drug because it is so bad for me. However, the reason isn't because I don't necessarily need it any more but because there is no protocol for me and we are just making it up as we go. Gosh, I'm such a lab rat. So since the arm infection is better right now, the doc said he was going to talk to someone else and then we would stop. I gave him a week to call back and so I've decided to stop it and the oral med that goes with it and get this damn picc line out of my arm I have been subjected to for the last 7 months. What is another couple weeks going to do except swimming with my sweet daughter and ruining all my fashion ideas since I have to have it covered. FYI, cutting panty hose to cover is less hot, less to match with, as if I should care, and even though you can see through, well at least people don't have to don't have to wonder.
Now I can go back and mes with my meds and hopefully get back on track on getting off of them all. I think I'm pretty much telling the docs the plan and then they are oking it or not. Is it too late to go to medical school because I can go into a medical appt and pretty much tell my driver what the docis going to say and what they are going to do and even give them ideas. Medical school in Costa rica doesn't sound too bad, suely I'd get a job if I survived this and paved the way for others. It's just cheaper outside the country then I'd get more training hrere. Who am I kidding I don't want to spend anymore time in the hospital as possible because when I grow up I'm going to be a professinal artist, dancer, and singer, right?
I have had a lot of pain in my right hip and was so scared that it was going out too, but the doc said no, and added two more diagnoses to my list. Tendinitis in my knees and bursitis in my hips. That makes me feel so old. They also discovered castrates due to the long term use of medication., oh so thats 3 more diagnosis. Got a couple more with critical low calcium and high potassium, but now they say that has stablelized.
Yes, I'm still shedding. not as bad of course but bad enough that I can still just pull some off is you arein the mood to get out the microscope and still thick enough not to be able to get a stray tan without out looking like a new species of of an African animal.
Mentally, I'm a little crazy. Been through a lot with family, deaths, dealing with not being able to drive but being too depressed to do anything that needs to be done, and soooo tired. When I was teaching I thought summers where the best. What was I thinking? Evalyn wore me out so much in the first week out of preschool I spent a whole day in bed, missed so activities, and had to call my in laws to come get her. When I have sleep I have the crazy dreams and so many are from God and are overwhelming. Hey at least we are communicating right?
My poor mouth. Most of the sores are gone but still having issues swallowing, and eating anything that my have been in the same state with something spicey. I love spicey food. But even things that should n't be spices can hurt and then I just don't eat, or eat chocolate. New diagnosis... scizophenic tasted budes. You know they have strawberry whoppers now?
A week after I saw the hip doc and he said what he siad I started having really bad painds in my froin muscle. I'm missing the three times a week PT so it could heal, if it is indeed a pulled muscle. I rested it up and thought it would be fine then bam the pain is back. So now I have to get some more radiation thrown at me to see what's going on. I'm going to put that off this next week.
Also self image is huge, stop eating sweets right heather, thats not the issue with weight going. I have learned over four years that predizone is the weight, not piece of chocolate. Chocolate has saved my life, And I guess the predizone has too. But normal people go through a slow aging process but I just feel so ugly so fast. I'm alive, shouldn't I be thankful instead of pissed that instead of people saying, oh this must be your sister, I have to be introduced. I never got to grow old, I just got old.
Financial stress without know too many details and just feeling the stress from Jonathan was bad enough but now I see that how much of our income and debt is medical bills. I really want to find a job or really set up my epsy site with my art like I have said. People love my hand made recycled jewelry, paintings, prints, etc and have already sold some just in person. I just have to commit to the whole mailing process where they will come pick it up cause for some reason the post office seems so hard, well everything is harder when you can't drive or are too tired. I don't want to sell stuff just to pay off medical bills but also so I don't have to feel bad about doing things for myself that I shouldn't have to feel bad like getting my hair cut or a spray tan. Then I watched too many pawn shows and started thinking of all the stuff I could sell like my vintage Raggity Ann and Andy that
s going for fifty and I got for ten, But I don't want to sell them, I like them. If I start selling stuff like that then there goes my vintage clothing collection and a few other things I really like. I'd think I'd rather eat sandwiches for a month or two... I don't know. Got some stuff to put on craiglist but all that money is suppose to go to big magnolia tree to plant in my Granny's honor at the farm. Anyone own a tree farm? We do and plan little vacations here and there but most are paid for through points from paying medical bills. Yea, I don't think I want to know anymore about medical bills.
Going to Emory next week to get the special breathing treatment and IVIG to help with my immune system but don't have a ride or a sitter yet but pray that all goes well and works. I know that Dr. K wants me to go to Philly sometime soon to see a doc and get a second opinion about doing a stem cell boost, which of course no one has tried on someone like me, cause no one is like me.
Well wanted to put the good and bad out there for you all to pray for. Wish those of you that talk to me about reading to blog would comment so I could remember your pray requests and advice could be part of the blog one day book!
Thank you for your prayers and words of encouragement!

Medical update "Who is in charge here?" and other questions

noreply@blogger.com (Heather) — Sun, 04 May 2014 01:40:00 +0000

For those that this blog encourages, educates, or whatever, I'm sorry I have been distant. Just know that sometimes I let the worst get to me. I think after my last blog and someone contacted me telling me their sister just relapse and I was the only one she could find that is still living this long. And I am the only one right now. Well, I gave them my information to get in touch with me, but I never heard back so I'm not sure if she is still with us. With that, and everything I have been going through and my family and friends have been dealing with, I realized how this blog can either affect people in a positive or negative way. That's a lot of responsibility and I wasn't sure I wanted it anymore. I was suffering terrible depression and a multitude of unanswered questions and lots of pain. I never want to write blog when I'm really down because I want to show everyone how I was able to see the light again. I just kept getting hit over and over again and as soon as I would pop up, like one of those kids punching blow up things (anyone know that the name of those things) and I would feel like writing, I would get knocked down again. (Random memory of my brother and I dancing in the basement to that sone "I get knocked down but I get up again) He was 10 and I was 20. Tangents I am known for.... So I will try to tell you the best I can what has been going on the last 6 months without you feeling sorry for me. I give all the glory to God for me still being alive and trying the thrive. I did lose 15 lbs cause my predizone was down to 5mg. But I was not eating well so I'm afraid a lot of those lbs were muscle. I was not exercising and used the excuse of my pain, lack of vision, and general depression. There is a funny story... I finally was able to fit into one of my thift store night gowns and robe and it was white. You know the kind that is the old worn polyester ones that are so thin and soft. So, I barely nicked my hand and started yelling I'm bleeding and wearing white!!! We told the bleeding had stopped but just like hospitals we make medication errors at home. I was taking twice the amount of aspirin I should have been on and so my blood was thin. I looked down and had blood on my precisous nightgown I could finally wear. I have a lot of short term memory loss but remembered an article I read about stains, very close to my face, and remembered a fifth of the article, the one I needed.... blood. We poared peroxcide on it and it was like Jesus and his angles came down and a miracle occurred... the blood disappeared in front of our eyes. I think I heard harps.
As much as I have been through, you'd think nothing would bring me to the brink of insanity. I'm serious when I say that a 747 could crash right in front of me and I don't think I would blink. This IV medication, Amikcen (that I spoke about in the Nov 1st blog) has horrible side effects. I felt so much like a zombie for most of the first week, not to mention the new picc line in my arm that causes all kind of issues with showering, doing the IV itself, home health coming in, and skin ripping from tape after tape.. There were days I couldn't bear to even drink anything or get out of bed, feeling like a failer as a mother and wife, and praying so hard for people I care about going through terrible things.They kept changing the dose and the frequency of the dose etc.The IV is very hard on the ears and kidneys. I had a huge freak out scare when I woke up one morning and could not hear out of my right ear. I went two days thinking that I may be going deaf. Lucky for me the IV meds or changes in meds cause an increase in ear wax and completely blocked my ear. I had them cleaned and and omg did it feel good. It was gross but now I know why my pup Wallace loves for Abby to clean his clears. It really should be a spa treatment and next time I was at the doctor, if I were you, I would request to have your ears cleaned. I'm also on a pill for this rare skin infection that caused an up roar in the medication regimen we finally worked out. So I had to change a lot of medications due to contradictions which is a very hard thing to do. We had to figure out how to deal with pain management, staying fungal free, and deal with the clot in my heart. I had not, and still, am not sleeping well do a multitude of things including medication. So that happening at the beginning of winter with the business of the holidays was putting a lot of mental and physical stress on me. The long term use of steroids was really starting to mess with my vision making it harder than ever to write my blog which is truly therapeutic for me. Not being able to see well meant not driving and drove me to more depression because I had to ask for even more help.
We missed most thankgiving and Christmas dinners due to me not feeling well and out decision to fly out to Texas to see my Aunt and Uncle. It had been able ten years since I had been out there. Evalyn did an amazing job on the plane and we had a great trip. Some family member were upset about us missing family gatherings but I do find it more important to spend time with family during the year and not just at holidays, which we make a point to do. It is difficult when everyone is divorced and you have 5 families to see. So sometimes we are just going to get the hell out of dodge.
In January, the lump in my leg that was very deep started the slowly rise up to the surface. This was very scary for me . I have been asking for a PET scan for a while because the treatment for my all over body cancer increase the chance of all other cancers and my friends that had [assed on my still be alive if they would have had routine scans to check. I'm so sick of doctors, nurses, scheduling people etc asking me who is in charge of my care. Well , your talking to her. I'm lucky to have the brain cells left to see this and know I have to beg my doctors to work together and to request scans and tests that I feel like I needed being 3 years post BMT. At this point Im over a million dollar baby and it would be great to have a social worker that helped me coordinate my health care while I found rides and sitters. What would happen if I was 80 and didn't have anyone to help. I spend hours and hours on the phone each week trying to make things work the best for getting the appts and the people that I am so fortunate to have helping me. That's when I decided that insurance companies, pharmasutical distributers, and maybe the whole health care system never really wants us to get better. It would cost them too much.
I finally went to the ER after the pain in my leg was just too much and spent several days in the hospital. I first went to my local hospital but as many times before they look at my file and say, "We are sending you to Emory". Actually I think this time I requested the move because there were already errors being made. But, yes, most of the time they choose to send me to my home hospital, Emory.
Ambulance rides are not so bad. They are nice people and let me smoke my e cig (we will talk about that later) in there and once stopped cause I had to go potty. They did do an ultrasould of the pulsing lump that had a huge whie had on it and I wanted to stab it, really. The ultasound came bace as being t "tumor like". Geez... Fay, my step mom more big sister, took me to the ER and since I was going by ambulance and had done this so many times before I had her go home and Jonathan bring me some needed items. I had already been through the admitting process which for me takes forever and can be very frustrating do go through over and over. I think im up to 12 diagnosis now, 4 pages of medications, and maybe 8 or 9 doctors, and still need to go see some new ones. So by the time I got picked up, taken to emory,sat my stuff up by myself that usually my loving husband does and knows right where I want everything, went through all the same admitting stuff again, it was at least 3 in the morning. My leg starting hurting really bad and I looked down and it was explodinging. The nurse was in the room and I told him and he said he didn't have orders yet to get any samples. Who cares? You don't tell a baby coming out, WAIT we don't havethe orders. So I told him to give me a tube, I sanitized, put gloves on, took the sample myself, labeled the tube and put it on ice. I got an excellent sample which of course they said the next day they couldn't use it due to wrong tube color or not taken according to protocol. Whatever. I hadn't been admitted to the hospital in a while so there had been some staff change and I got to see new friends.
About that time, my new immune system decided to attact the remaining old one, called Graft Vs Host Disease and it can attack many different parts of your body. I'm so glad it didn't attack my gut this time, I think if I have to be in diapers again I might lose it. Instead it attacted my skin (I have a blog from 2years ago where it did the same thing), my mouth with sores and difficultly swollowing, and my eyes.I have almost choked several times and think I might could have died once at the movie if my aunt had not been there. The GVHD didn't really hit hard until after I left the hospital, so then I was back again. And then again for a "tune up". Where we worked on my medications and I recieved an IV called IVGI which is the combination of 1000 peoples platelets that is suppose to help my immune system and also had to start a once a month breathing treatment that can only be given in a hospital setting and promise to take my inhailer everyday, which I forget sometimes, and my predizone went back up to 20 and in exchange I didn't have to take the horrible drug cyclosporin. It was probably the most heated discussion that my doctor and I have had. My skin is still shedding but almost better. My aunt Susan and Fred were down to see my ailing Granny (more about that later) and gently help me take of at least three layers with many to come. I was like what's his name on Charlie brown that has all the dirt around him. I couldn't go anywhere, sitting or walking, withouth the need to vaccum up huge peices of skin. Due to the picc line for the IV, I had home health coming in once a week and had the most wondeful nurse, Carmen. She loved Evalyn and Evalyn loved seeing her work and her little girl and Evalyn would exchange pictures. So now with everything else I was expected to mostrise daily and add i dropped to the list. The mouth sores have been horrible. I'm still dealing with these and can not wear my new beautiful dentures. Anything even a little spice will set me on fire and I consumed a great deal of chocolate because that was one of the only things I could taste.The medicationwas like pouring whiskey over an open wound. When I finally said enough, they started to get better and continue to do so, very slowly. I know two different languages now, one with or without teeth. The latter I have to learn again.I kid with people when they give me the "you poor thing" look and says hey.. I got a fake hip, fake spine, fake teeth, and another persons marrow, I'm going to be a bionic women and out live everyone!! That always lightens the mood. My skin was so sensitive that even clothing or even some natural items would burn my skin to the point I would have to run to the nearest hydrocodone bottle. I learned quickly about doing a test spot. My eyes, well they continued to get worse, but I would have good days and bad days. My right hip, both knees, back, and right wrist were all showing signs something wrong. I had a fall, that I risked myself while trying to train my grandparents dog. I ended up with a mild concusion and scans all over my body. So the fall was worth it because I got scans and know I don't have a tumor in my brain or somewhere else.
Right after my Granny passed away (tell ya more later), Evalyn and I already had reservations at the hotel in the forest, my home away from home. This was the third attempt to go to the hostel since Nov. Since we were waiting to have her service for another week and a half, Evalyn and I took off on the best mother/daughter trip ever, our first, and will tell you more in the next blog. We got into a wreak on the way home and the air bag hitting my face didn't help my eyes. Everyone was ok, I got the the ticket of course.
Right now, I'm trying to get it together. I saw the eye doc and they have added cateractes to my diagnosis list and I now have eye drops four times a day, lowered the steroids to 15, found out that my bones in my knees and right hip are doing ok for now but I have tendinitis and burcited and they have ordered exstensive PT at home to build up the muscles that have weakened so much.I'm very thankful cause I was already trying to figure out how and when these surgery would occur. Next week I'm getting my spine and neck checked out. After that my wrist and bone density and vitimin D shots, and the very slow dosage reduction of steroids. Please pray for these things and for God will in my life. I'm trying to seek him more and more and even when I feel that I can't hear him or he is not there it's people like you that help my faith even on the darkest days. Always try to look for God in the smallest places and in every smile someone gives you. I do prefer the neon signs though.

GVHD of skin... I was molting like a lizard.

Just some of what they got out of my ear.

Medical Update... it must be November

noreply@blogger.com (Heather) — Sat, 02 Nov 2013 03:50:00 +0000

Mind you, I do need to update the start of this blog, as things have changed, and new events have occurred. For example, I no longer have a booth anymore but do intend to set up a site at some point. I do hope to do something with myself in the area of bringing home some money and enjoying art and music again. I'm super sad, mad, and very tired.. that really shouldn't be an excuse for grammar or spelling for me but sound like a good one for today

Well on to the point. As negative as it sounds, please know my chin is up and I know I'm lucky, however if something happens at the same time for 3 years in a row, anyone would be a little nervous. Three years ago today I was rushed to Emory in horrible pain and shut up in room 601 and suddenly had spinal taps, huge needles in my bones, and wonderful aunts fighting for pain meds, and away from my 4 month old baby. Seems like a life time away and definitely a different person. I think I'm a better person. I'm glad to not have passed on, as I was beginning to think I might the the 3, in the " they come in three" saying. What I have is a very rare infection called mycobacterium chelonae, google it if you must, but I prefer not to know anything else about it at this point. One can only handle so much. This horrible rash is painful, itchy, and very ugly and it all goes back to when I had my port taken out, without the call to order and without any numbing, due to it being put in wrong, and the malpracticing wound care lady, whom I shall know the name of when my medical records get here, did not following or bother to read the order of how to take care of the wound, leading to the first infection... almost a year ago. Do I want revenge, not really. I'd say compensation... gas, time, nightmares, medical supplies, medication that is horrible for my kidneys and hearing (weird), pain, distrust, scars, and possibly my life. The least I can do for my family and for myself is to keep up the fight, not only against cancer, but for self advocacy. Anyhow, I got my fourth picc/port but this time it's on the inside of my left arm and covered with an itchy netted sleeve thing. Back to flushing every night, taste of saline, home health, ordering medical supplies that insurance doesn't cover, more doctors appointments, more blaring bad news on the T.v. at the doctors office,changing dressings, weekly blood work , and have to get a hearing doctor, etc. At least when it's in my chest I can hide it. My new plus size model career is over, not that I was banking on it. Geez, it's like cancer 101 all over again. So I guess the prayer for me would be to have a good attitude, not look in too many mirrors, take ALL my medicines, IV each day, shots, drops, mists, and inhalants and try to go about my merry business of living and living abundantly. I been at this too long to question God really, or fate, or myself. I'm still here for a reason and if I can focus my will on the task at hand I know I can continue to do the Lord's will. That saying, as my cousin said, I can still be pissed off. Would I choose this, no. Do I trust God has a plan, YES. I'm just going to hold on to that. There.

Enough about me. More importantly, there are many people who are hurting because they have lost loves ones this week. According to the news this morning and facebook this week, a lot more than the ones I'm mentioning below. (Thinking of you April) Jonathan's coworker and the person that hired him passed away suddenly. Then a dear neighbor of ours passed Monday. Closer to our heart, our dear uncle passed today. He was diagnosed soon after I was and never in my dreams did I think he would go first. He was always so strong and positive and would come and see me when he could at Emory. Always positive and the memory of his smile and his positive energy will continue to give me hope. Please pray for us and Jonathan's huge family during this very difficult time. May I be a light of hope to others during my treatments as he was to me and others. I smile thinking of him now. He even wants a party instead of a funeral... my kinda man and a handsome one too, if I do say so myself. You will be missed and I'll drink to ya.

God Bless,
Heather

Really, Really, Look,Think,than Look Again

noreply@blogger.com (Heather) — Wed, 09 Oct 2013 20:48:00 +0000

This is the time of year that for the last three years, everything is getting better, I'm involved, exercise, my child is still alive, etc. I haven't posted in so long mostly because this is also the time of year when the shit hits the fan and I'm back in the hospital and everything I have been working toward gets thrown back in the back of my mine. Maybe I feel that if I tell all the great things going on...I'll be doomed. Not that I believe it has to happen but imagine how you would feel is everything Christmas for three years were ruined no matter how hard you tried to prepare and plan. Medically, I have a few updates. I still have these horrible patches and bumps near my port that never worked and got infected due to malpractice, not following orders, and a secondary infection that is going down my arm and I'm finding new lumps each day. It's so ugly and people stare at it like I'm a lepored. I really need a malpractice doctor who will help me figure all this out. I don't want to get rich off this. I want justice, I want to feel that the last year and three months of this pain and horrible medication was work something. This not to mention the emotional trama I endure during the procedure when the doctor started cutting into me with no pain medication and month and months of wound care with home health. Anyone out there have any connections? Advice? Experience? Otherwise, I had a CT done and the blood clot in my heart is still there, now I have to give myself two shots a day so it won't get bigger. I really need a PET scan, where they look at your whole body, however, they are expensive, but hey what's 7,000 more bucks after they spent a million at least on me to save my life... how about the rest of my life? All the treatment can cause a huge increase in every kind of cancer in my body. A neighbor of mine, just found out her cancer is back but not just the kind she had, but it's all over her body. How was that not caught. Insurance crap, I'm sure, or doctor's not following up, or her hope that it wouldn't happen again.

Well for now I'll just continue to pray and hope and plan. Right now I'm planning a tea party for my lady friends, spending Christmas in Texas, seeing Michael Buble in concert, planning my emotional vacation in the forest and in March going to see Stomp.

I love photography and plan on adding more prints on my etpsy site with my paintings and crafts..well as soon as I get that up and running. This beautiful spider was outside my friend Tasha's house.

My friend Tasha and I going to the airport for my flight to Las Vegas. She took me to get my new teeth, the connection, and drove a lot to get me from Atlanta to her house then to the airport. Except for the fussing over me of "did I need anything", I can't complain, she painted my toe nails. She is a great friend... just lives too far away.

First time in an airplane for 5 years. NO I didn't ask my doctor for permission but I did wear a mask..

Flying over the Grand Canyon, I spent maybe 3 hours there once on a crazy 7 day road trip when I was 20.

In Vegas, God if I don't get off this predizone and get then again, I'm going to try my hand, or should I say belly, at plus size modeling.

Hello.... blond hair.

We saw an awesome show in Vegas. I still can't believe how they could do all those effects. Besides that Vegas is over rated if your not dressed like a flusy, want to be out all night, and lose losts of money. I think next year, bringing Evalyn will be better, hanging by the pool, doing the kids stuff, and riding the lazy river.

We got our game day out fits on, I think they lost. Go DAWGS!

Sunset at the farm, Evalyn said, look how beautiful, of course she said that about a worm the other day too.

Oh this girl, her preschool thinks that she is the best kid ever and want to take her home. She is a sweetly but we are helping her develop her conscience right now. We are learning about telling the truth, that we need to try to do the right thing, being thoughtful and sweet in her speech, minding manners, and being brave. Heck, she reminds us to say our prayers.

I have a picture somewhere when I was a phone at her age... gotta find that.

You can't say Golf Cart Ride at our house without the dogs going nuts. Evalyn likes to ride and help drive.

Really, is she 15 here? I hope she learns this look won't get her far.

Christy and Robbie came to Athens for the weekend and spent two nights. The guys went to the game and we took the kids to the splash pad and had a great time... then it was nap time....a better time.

I'm so lucky to live in such a beautiful place.

Learning to ride, finally got her to wear her to wear the helmet. To be fair, I bought me one too, a cheap white one which she plans to decorate for me with paint, stickers,

She is coming home with so many papers. We give them to family, to neighbors, and of course to friends and there are plenty hanging up at the house. But my goodness...tons of papers come in. I'm not a mail person...unless it's something I ordered online, hee. Luckily, Jonathan checks the mail, sorts, it, recycles, and mostly organizes. He's the closest thing to a secretary I have.

Here is Abby and Wallace. They like to sun sometimes and are both little moles when a blanket comes around. We call it BOB, when we have Boston's on Both sides. They have been all over me, I don't mind. Evalyn is learning to approach a dog that doesn't like surprises, but otherwise they both are very sweet to each other. Since we lost Chloe, Wallace and Abby have been laying, sharing, and playing together. At first she didn't know how to play but is learning. She's learning knew tricks and loves riding on the golf cart, we have to say GCR cause they KNOW, and running with Wallace through the fields and roads. She still seems to have a bad allergy despite the meds she is on not to mention the topical meds, as if we need anymore meds around here.

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This is what Evalyn called setting up her tea party... we had much more than tea.

Having fun at Brooks third birthday party.

She got this Happy Birthday headband from the party. She didn't take it off for a week. I kept thinking that I was going to put an UN on it. Alice in Wonderland is one of her favorite movies.

We were able to take a part in a special kids dance party to support Keep Athens Clean. We had so much fun watching the different dancers, Irish, Salsa, and amazing hula hoopers. If they had an adult contest, I was ready to use this new hip... and I did, I had so much fun dancing for the first time in forever. I didn't want to leave!! Evalyn had on her original Michael Jackson shirt from the 80's, it's a dress right now.

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Amma and the princess.

We went to visit Ms. Dover and Evalyn brought her a gift and showed her new dances.
This girl has moves and her first show is Dec 10th! Mrs. Dover wrote a very nice thank you card and even mailed it. She is soooo sweet and always cheered me up with her cards when I was very sick.

This is my new wonderful 70's chandeler I found at Modern Vintage. I saw it and when I saved the money I bought it, oh yea and because I sold a painting. This goes PERFECT with my kitchen. Ester was said to see it go, but you got to be willing to sale right? It was the main light for the store.

We went to visit my parents and watched the GA game. Evalyn had lots of fun on the visit, yummy wings, and she had lots of play time with her Paw Paw. She loves to go ourtide and play with him.

We had six dogs total that day! They did well playing together and figuring out who was in charge. Since the Sheriff isn't around anymore, Chloe, they are holding elections.

And what happens after most games.....

Paw Paw, Evalyn, and the Pups.

Evalyn is so excited about her new snow white costume. It's a little too long but Velcro and duck tape helped. She finally realized that she is not a real princess and can't grow up to be one. So now she will say, "I'm a pretend princess." and kinda gets sassy when others try to play with her about being a princess.

We had a great play date with Noah. They dressed up and we went on a nature walk. Silly faces.

The new puppy in the family, Jennifer and Matt's, her name is Sadie and she is a sweetie. Abby really liked her, I guess cause she has had so many puppy's.

The title of this blog, " Really, Really, Look,Think,than Look Again" is about looking for the good, the magical, the wonder of the world, the people around you, the strength and weaknesses in yourself. It's so easy to get so busy, stressed, going through the motions, turning our back on choosing joy instead of despair, thankfulness over being ungrateful, choosing to help other instead of looking the other way, giving instead of always wanting, looking at the world through the innocents of a child's view. "It's a beautiful day mommy" "It's raining but that's ok, it's makes the flower grow" " That earthworm is so beautiful". God watches the sparrow, I'm thinking he watches the worm, so he is definable watching over us. Remember we are trees in a huge forest, his plans and the ripples events make affect the plan of God's will. Only when we admit that we don't have all the answers, that we have weaknesses, only then can God work through us, through others, through nature, or music, or a worms the strength to endure and be victorious. If we were able to do it all by ourselves what would the point of having any reasons to pray, to knell when your love one is on their death bed, ask for help, take the help, or to hope. We do not have to believe on faith alone....Really Really Look, Think, than Look Again.

With Love and Thankfulness,
Heather

Watch your P's and Q's

noreply@blogger.com (Heather) — Fri, 23 Aug 2013 01:34:00 +0000

If I only had a blue tooth in my brain that recorded my thoughts and would automatically show up on this blog. I go through stages where I just can’t pick up the computer to write, to surf on facebook, to google something, or even to shop, I know it’s hard to believe. Maybe it’s a good thing, meaning I’m busy and even though very much still in this battle, I’m living my life. Again, no news usually means good news, for the most part. Writing this blog used to be an obsession, something I had to do, well cause I couldn’t do anything else. Yet now I’m capable of doing so much more but lack the energy or time to do them. I’ve let some of this go… seeing small steps turn into an almost completed project such as reorganizing the laundry room or going through our closet. Big Woop, don’t get too excited. Medically, I’m a walking Miracle and I think that after my 2 friends passed after relapsing, I just shut down a little. So many good things have happened over the couple of months. You know how I’ve said it’s hard to write when the bad things happen because once it’s “out there” it makes it true. Really true, for all to read. I have also started feeling strange feelings about writing about the good things in my life. Almost like if I write about them I’m giving myself a false hope or saying “wow look at me”. Then everything will come crashing down again. I’m on my third year… this is the time of year when everything looks up. The city is buzzing with students, football season, new things for Evalyn to do, I’m driving, able to walk, not in and out of the hospital and then as the ball starts rolling again…. Wall, hospital, yada yada. I know I shouldn’t think like that and I do praise God for his many blessings but I can’t help but feel I’m walking on a tight rope here. I mean really we all our but it’s really seen and felt by someone who has been through hell and back and back for more. Like a boxer that just doesn't know when to stay down. I know, it sounds psychotic and I probably am.

I like time piece films or shows. The clothes, hair, horses, dances, real dancing, lanterns and petticoats just makes me feel happy and think of the simple things we take for granted this day in age. The wonder of traveling by railroad, families staying together, modesty and manners, and where everyone loved to read and learned to play an instrument or do something with their hands that had nothing to do with technology. Now we are like “ oh they are growing beef for us to each in tubes, no big deal” One of the shows I watched in the middle of the night “Hell on Wheels”, one of the lead railroad workers said “watch your p’s and q’s mister” and the cowboy said, “ I’ll mind the whole alphabet.” Ha Ha now that’s funny I don’t care who you are. I have a lot of P’s in my life… Preschool, Preschooler, payments, pools of water causing roof leaks, Parties, Panties, mostly Princess Panties for my Potty training Preschooler, Poop, lots of Poop. Dog Poop, Poo Poo in the Potty, Prizes,Pee,Pullups, Prices, Praying, Praying more, Playing, Pretending, Patient, Patience, Parenting, Prednizone, Protecting, Procrastinating on going to new doctors they want me to see, Plenty of food, love, and support, People that are affected by cancer, Preparing for the worse case and the best case , Probiotics, Piles of stuff, Pounding of rain and more rain, Pain, Puppies, lots of Pickles. Are you bored yet.

Well just know that all the great things going on that I’m going to tell you about is by the grace of God and if that makes this demon cancer try to kill me again or something related, I hope I Pull though, again and again. I got the P’s covered. The Q’s… well those are a little harder. Quitting, I won’t quit. It’s a fight to do almost anything do to my energy level but just like my new immune system is fighting the old and causing problems, I expect me refusing to give up is fighting the powers at be and every one that stand behind me and beside me. Or maybe I’m just full of it.

Oh, my new bed… it’s a wonderful feeling to be able to be that comfortable with all my aches and pains and surgeries. I don’t regret one minute taking out my retirement money that I may never live to enjoy, to be able to rest… even if I still can’t sleep due to the voices in my head and someone or some dog snoring.

Walking…. The last time I went to Emory a few weeks ago, so many of the staff were praise God because I didn’t have medical equipment attached to me and I almost look like a normal person. I thought one lady was going to have a holy ghost moment right there. Well, she kinda did in her own way. They think I’m so strong, so uplifting to others, so amazing. “You lift my spirits” my oncologists says “you are doing great.” And I think “I’m a lab rat, there is no plan here according to you, cause you all don’t know what to do about me, you don’t know why I’m still here, or how you are going to keep me here, we can put a man on the moon in the 60’s but you can’t figure out this horrid skin issue or what to do about this heart clot that scares the hell out of me, I think what you mean doctor is I’m doing great…considering.” I don’t feel great, that’s for sure, better, yes, but great? God is Great and that is the only thing. Yea, I know glass half empty. I’m here because of God and there is no other explanation. If it were up to me I would have been willing to die in a heartbeat, many times I wished it would just be over and if you felt the same way at some point about me, I don’t blame you. I’m passed that now. Now I take each day for what it is, even when I’m scraping my lazy butt out of bed to be a half ass mom to my extraordinary daughter. I am a good mother, just not in the ways I expected I would be. But I'm definitely a better person in general.

During a very short period I was pushed into full time patient to full time parenting with the exception of some help from family and a couple friends, which I am lucky to have for sure. As to no fault of their own finding rides, caretakers, and sitters has been harder than ever. So much that it has been hard to follow up with my appointments but this past week I was sick and my cousin and in law jumped right in. What doesn't kill you makes you stronger right? I think I mostly want her to be around a lot of different people because I know that if something happened to me she could go on going to school, dance, and see her friends and loved adults that understand our values and being consistent is the reason she is such a sweet girl. At preschool, everyday (3 so far) a different teacher or after school worker has told me that she is so kind, friendly, pleasant, nicest preschooler they every met, and one lady said something like a kindred spirit or compassionate soul or what is that term. Ahhh short term memory.

We are booked to put our 13 year old lab down on Sat. Please pray for us and esp Evalyn. She loves Chloe. No one has been through more with me than this dog. I wouldn't say that she is at the very very end yet. But with the incontinence (and the effect it has on other dogs) and the anxiety that she experiences during storms or at the threat of rain, if affecting our quality of life as well as hers. I was up most the night with her to keep her calm. We watched a documentary on bird watchers in Central park. She's a pretty big dog so when she pees or poops in the house it's a lot. She's also pretty deaf and doesn't seem to see very well. I know she is in some pain with her hips and joints but sometimes her and Wallace will play like nothing is wrong. I always thought I would wait until she couldn't get up or stopped wagging her tail. There are already things she can't do anymore that she loved.. going to little river canyon and cliff diving and bouldering, catching anything in the air, and jumping up on my bed. She still loves to swim, but should everything be taken from her before she goes. My Granny always says we are more humane to animals than people. God give me strength to do this.

I have been able to get out and do more things... and wish I would have taken more pictures. My sister, Jennifer had a nice night out before she moved back to ATL and my daughter Corynne and I had a fun day shopping for school stuff. My newer and great friend Leslie has been a lot of fun and she loves to have Evalyn around. I have started back to my cancer recovery yoga class and can tell a difference in how I feel when I can get myself there. Evalyn and I both are taking classes at Dance FX. Your can google them... they are a non-profit dance organization and was able to give us scholarships to come to class. She is taking preschool tap/ballet and I'm taking a strength and flexibility class to work on the areas I had surgeries on. We had a great birthday party for Evalyn and everyone had so much fun! That being said, we have had to miss some celebrations, parties, classes, church, etc at times when I have not felt good. But, hey.... you make plans, some you can keep some you can't but you still make plans. The biggest plan yet is that I'm going to meet Jonathan in Las Vegas after his business trip for our 5th anniversary! I'm a little nervous, haven't traveled by plane in a while and I have to where a stupid mask. You wouldn't believe the man power and effort it is taking to get Evalyn taken care of and get me to the airport. It's crazy.

My friend Leslie and I went to eat yummy chargrilled oysters. You can tell I'm having a hot flash cause my hair is all slicked back. Like many new friends this year, she has a child and we have had play dates and she watched Evalyn at her house and even took her to a play... a princess play at that.

Evalyn's first day of dance. I got her a child size umbrella for back to school/dance. She seems to really like it and dances all over the house.

First day of Pre K in Mrs. Sherrie's class. She goes on Tuesdays and Thursdays. Each morning is a little battle from the time we get up to getting dressed, to eating, and getting out the door. "I'm too tired I don't want to go Mommy." Then there is usually a 5 min time when I have to say "ok, if you don't want to eat breakfast, get dress, or whatever it is, go sit in the living room, while mommy eats and gets ready." Then she comes back and says "Hey mommy, do you want to share breakfast." Sure. Then when I pick her us she says " Can I go there again" I'm convinced that tots are bipolar.

Our three pups... Abby, Wallace, and Chloe.

We had a bad bad storm a few weeks ago that was almost tornado like. It took out many trees including this huge pine that has been at the farm forever. I'm not a huge pine tree fan but this one hung down over the water and provide much needed shade. Can't tell you how many hooks and bobbers I lost fishing near this tree. This has to be one of the last pictures taken of it. It will be missed.

Birthday girl turned 3 in July and had a big Dora party.

We sang songs, colored, played dress up, won prizes, had pizza and some friends brought some wild animals to play with including turtles, birds, and a huge rabbit!

My brother Scott said an amazing sweet prayer in front of everyone which shows how much he has grown up. My sister Anna was able to bring him to the party. Here is me with my side kick Dora outfit.

Here are the explorers making a silly face. We had a map of the farm and piled into the back of the truck to head to the troll bridge, the butterfly garden, the dock, and the rocky road. Singing kids songs and finding treasures (pool toys).

And here is the whole explorer crew. Thanks for your help!!

My cuz Shanna and her daughter stayed for swimming along with a few other friends!

Daddy's first time in the pool for the summer!

Visit with "Amma" and a nice lunch.

Evalyn with our new pup (5 years old). Her name is Abby.

She's my little pinup girl.

On Evalyn's birthday and my sister's too!

Out to eat for birthday week!

New dress, hot wig, and yummy mussels.

The closest thing to this years family pictures.

Yes...I'm still here and walking

noreply@blogger.com (Heather) — Fri, 26 Jul 2013 00:28:00 +0000

I know a lot of people still don't have face book but I forget and then I don't feel like writing or don't have the time or energy to enlighten you on my fab life. But yes, I'm still here. I promise that if something bad happens, Jonathan would update my page if I could not, and if I know that the end is coming then we will have a big party with me there.... so you can tell me to my face, ha ha, and then a small and cheap burial at the monastery in Covington, GA, which I would not want anyone to drive for hours to come to, that's what the party is for. Very cool natural cemetery... all woods and trails, no chemicals, just you and a wooden box. Sounding a little morbid today, ay? Well, I found out the the last two people I was friends with have passed. One of which the family can't even pay for a headstone, anyone in the granite business? Two beautiful strong women, close to my age, one with a son, the other with a smile that lit anyone up. I was so busy with my hip, and teeth, and back, and blah blah... we lost touch for a few months. I found out about both on Tuesday... of course that settle my decision that I should promptly cancel my Emory appt for the next day. Might cancel it again next week, because I can. They don't know what to do with me anymore than I know how to fix a car. I feel like a walking time bomb and miracle at the same time and I'm doing a little dance to entertain everyone that has a place in their heart for lab rats.
Well besides that little psychotic information in my head, everything seems to be going well. Of course, at this time of year, this being the third, everything always seems to be going well. I get better, start something new, last year was my booth and dance lessons and children music and art. This year preschool for Evalyn, exercise classes, and starting an art site, getting back into shape and off more meds. Learning to use false teeth soon. Not to be pessimistic, for just scared, sorry but true, something about Oct/Nov.... it hits the fan again and there I go... paving the way for the next lucky person to get this horrible disease and learn from what happens to me. Yes, we are praying that it won't be the same this year... I'm currently working on being a bionic women and outliving you all.
There are a lot of wonderful things of course but I'd rather share them in another blog that doesn't sound like I'm fishing for encouragement. My family,friends, and pups bring so much joy.. that is why I am still here, and the grace of God, or the plan of God. I'm just one pissed off patient trying to figure out how to go from being sick to getting better and back and forth, mad that we can do all this amazing stuff with computers and space but can't figure out cancer and treatments that don't us falling apart and infertile? And I'm tired. Tired of not sleeping well, tired of taking meds, tired of aching, I'm tired of sucking on this damn pretzel. Tired of being tired and not being able to get my house clean and organized as I want it...tired of the short term memory loss, tired of thinking about money, tired of my husband having to drive a little green jelly bean car and I'm tired of asking for help from everyone. I'm tired of looking at my favorite clothes I still can't fit into and I'm almost tired of looking at this lake love so much but don't have the energy to fix my poles, get bait, get dressed, get Evalyn dressed, safely get down to the lake and then fall over in a mad hot flash and then got back. That is NOT how fishing is suppose to be. Ok, well I'm tired of looking at this screen. Hope your not tired of me yet. By the way I can WALK... without any help... how far, haven't chanced it yet, but I am getting on a plane in the next month. Also, planning on getting out of town for Christmas.... Texas here we come....

What have you peed in lately?

noreply@blogger.com (Heather) — Wed, 29 May 2013 09:35:00 +0000

Friends that came to help in the yard and the house. Thank you!

Well, most of you will say the toilet only, or men may say the occasional outside pee, which they really enjoy for some reason, or outside cause they were camping. I'm starting this blog off with this because I haven't blogged in a while and that usually means it's too hard to talk about, to gross, I'm too tired, or as I have said before when something is in writing it seem more real. And I promised to be real, hence the title of the blog, because I know others are going through the same thing, or will. So in the last month due to my bladder issues along with my hip problems I have peed in a coffee cup, a plastic cup, a female urinal (ever heard of that?), a bed plan, a bed side potty, and often times my depends that Im still wearing everyday. Not only is it embarressing to carry them around, wear them, but haveing to ask people to help me get them on my bad leg, or legs now. I have even peed in the floor before I could get one on and couldn't get to the bathroom. Do you know how hard it is to potty train a child? Do you know how hard it is to train a child when you yourself have to ask her to get your "pink panties" . Luckily, she is wearing real underwear ( ok just got really side track eating chocholate and looking at Rick Steve Europe Trips) most of the time but just won't poop in the bowl, any advice? Evalyn is so sweet though, she will say do you want a pink one or a white one, mommy. She will sometimes give me a prize for going to the potty. So at this point, I just try to laugh about it and add it to my joke of 32 going on 70. It's really fun when you tech comes in and says " Mrs. Cape, have you had a BM today??" very loudly. But I guess they are use to shit and I hate to say it but I think my husband is getting use to it also between a child and a sick wife. I feel so bad when he has to help me, or clean out my potty chair. He has to be the best man in the world. I still do not have any teeth which I have found also affect the kissing department, as if we needed another reason not to get friendly if you know what I mean. A friend of mine knows someone that said they would donate money for me to be able to get me some good dentures. I don't want the best but not the worse either. He is a missionary that does dental work and he is trying to work out details. I'm trying to be patience, we dont need to pay any more interest on medical bills but I feel that I'm looking older everyday. At one appointment, my sister brought me to, the nurse or tech said " Do you want your daughter in here?" Needless to say, since I used to model and people thought Jen and I were twins, I busted out crying and said " That is my younger sister, I'm only 32." Grrrrr
I'm not sure if I ever explained why I decided to go ahead and get them all out. First, all of my doctors agreed with me, except of course the oral surgeon. I could have save, for now, 10 teeth, but the rate that my teeth were chipping and falling apart I would have need constant dental work. Not only expensive, but time consuming, and a nightmare. Also, the medication, reclape, that I needed to take soon for my s osteoporosis, may cause deformaties and other problems if I needed any work in the jaw such as a root canal or an infection. I have them ,the teeth, in a bag, I don't know why, but I haven't even looked at them yet.
As most of you know, I had hip replacement at the beginning of April and a few week later I fell in the backyard and got 3 more fractures in my pelvis. Painful as it was, I healing faster than I thought, I just need to slow down and remember just one wrong step set me back 4 to 6 weeks. Recently, I was having swelling in my feet, nothing unusual and have found weird lumps around my body. I just got out of the hospital and they said I had cellulites, an infection of the tissue, which can be very dangerous. We are still waiting on the punch biopsy I had at the dermatology last week. They may have kept me another day if pipes wouldn't have busted in the wall and no kidding, 4 floor were flooded, all the linens used for the next day, and ceilings were falling apart. They had to move me to the cancer unit in the middle of the night after giving me my 4th IV. At the least the food is pretty go at Athens Regional.
I looked over my medical stuff I have and I have been in the hospital every month since last Oct., except Feb, but twice so far in May. We are selling anything we can and I'm closing my booth. We also decided to cash in my retirement, no pentalty for disabilities, and will try to pay off most of the debt we have right now. Otherwise, I've also decided to use some of the money to increase my quality of life now and not bank on living till I'm 60 or something. This includes fixing our dock that is a danger to anyone that decides to get on it. I have some stuff on ebay, craigslist, and stuff for said in my front yard. I'll be posting some of the things for sale in case you are interested. A few is a white 6 piece wicker set in fair to good condition, useable, but could use some work. Another is a rare baby bumper, quilt and 2 sheet set called Sweet strawberry by pottery barn, and a queen size termperpedic classic mattress with foundation and cover. Going to a vintage store this week to see if this girl will purchase some of my vintage collection, and consigning Evalyn's clothes and shoes. Now that I'm starting to feel somewhat better I hope to finally get my etspy site up and going with my art.
There's so much more to say but I'll wait for another day. Someone told me this week that if I make it through this stuff I will have a huge testimony. Funny, the day after I went to church for the first time in a while, the sermon was on trials and tests. The next morning I fell and got 3 more fractures. Ha Ha Well, I think I will and do. God is the only reason I have made it this far and plan to keep fighting. I pray you do the same where ever you are your journey.

Evalyn giving love at the hospital.

Heather's Parallel universes between the needles and the love

noreply@blogger.com (Heather) — Tue, 16 Apr 2013 09:31:00 +0000

Good evening…. Not getting to the horried sponge bath, the results of dancing with stars, and really cute stuff about Evalyn (there is too much cursing in my head for name to grace this page too many times)

Warning do not read this if you want a warm comforting feeling... go buy yourself a heated blankets off Target.com. Don't really have much direction in this blog since so much has happened, is happening, and well may just keep on going as the mirage of a light at the end of the tunnel seems to be either death or a break in the tunnel to put on a new part, take something out, or the graciousness of someone that stops me from getting off the train, flicking the finger, cashing out the retirement fund, go travel and settle in Amsterdam, if I had not dropped yet due to the shock in my system of no medications except those deemed natural by most and natural therapies. So this mixed media blog may be the worse. Frankly my dear, I dont give ..... Ha made you cause in your head. Does it count if it doesn't come out. Yes, Yes, I think there is a verse, something about oo hhh I don’t know. I have lost a lot of memory of the bible right now.

I got a free pair of pearl earrings while making sure the right my husband got me for a present. Oh and getting my two other rings cut off because my hands may never not be swollen and I don’t want some ER nurse pulling on them if I die. No offence Jenna Boo. Hee Hee

So I'm just going to write. It's 12:48am on the 2nd Tuesday after what I would call the first major surgery of my life, watching dancing with the stars on Hule... don't know who these people are, I just love dancing, and I have officially become a TV head when I can't do anything else. Oh and eating my favorite gummy bears now Grachs tiny gummi Bears. Seeing this computer screen right now due to my vision family... note: make appointment with eye doc , thought; crap didn't take my eye drops again today, what else did I forget. note: make appointment to get reclape and pic up vitamin D shots so I don't keep falling apart (please God, please). Note: contact lead that my cuz gave me for a lawyer. ok, this a to do this, that you can't do.

Did I do enough PT today? Should I have left the house today, not that I can drive, but risk getting covered in pollen when every ones nose is running and the swing set isn't totally up and working, or playing,then I'm just so tired and me darting after Evalyn and then.... whew the things I cant imagine. Thank you Verna for coming today on short notice and bringing me yummy sour crout (sp) You just should have seen my hip doctors face when he came in to talk to me. I'm so lucky to have gotten Dr. Monson, so so lucky thank you Dr. Khoury. He not only pick up a patient when not accepting any, but a rare one at that. His face and his words said, we did it, it looks great , your legs are the same length ......but what the fake bone is holding on to is pretty much sh..... so I have to be more careful and use my walker twice as longer, put hardly any weight on it, and follow all protocols. No 90 degrees or above, no pointing toe in, no twisting, no crossing legs ,even at ankles, is that forever... I don't know. thought.... should I eat some peanuts.... green out of the can of course. hmmm hell I should have a soda too. I'm trying to eat all the easter candy I can, trying to rot my teeth out haha. Now, I'm gumming some gum weird.

Andy.... loved the soup, so healthy. Thanks for dropping it by when you didn't feel good. Jonathan disinfected everywhere you went.... don't worry sure it's allergies. If you do go to the doc ask for Resscon GG, it is awesome.

Kinda missing a friend of mine that wont respond to me and have no idea why. Cant think of what I did but I can't think clearly as I take a drag off my fake cig, I will tell you about that later, or maybe not.

12 min later...crying now.. I went to the bathroom... takes me a while to get there, it's a commitment. I have a potty chair right next to me for emergencies and Jonathan has to clean it in the morning even if is so gross. I stopped for a few sec and touch the slowly healing mostly raised scar that put the cherry on top of my "I was in a horrific car wreak look" on my chest ( I liked the bald cancer look better, I'm going to shave it again if I have one more hot flash) that is hideous and still has red cyst bumps that they don't know how what they are and the memory of of the pain of how it was removed with no pain medication and incorrectly taken care of at the hospital leading to a 5 night stay instead of 1 and months, of gory dressings and how it was refusing to heal, then the pain of getting it scraped off , feeling everything, only to remember that it started with an incorrect placement where it was unusable and painful from the beginning. Talk about post traumatic stress, how about some paranoia in there. That's about all Im going to say about that right now. I am no way vain at this point and have 10 other scars speaks to those that have been mistreated due to something.... in a hurry, apathtic, doing something you don't want to do because it's late? FU (I say that a lot in my head, so And you too bank of america for sending us 300 dollars today for not working with us during our foreclosure. As if 300 dollars, shouldn’t make my day better… but it’s not really here…. I don’t even get to see it… it’s to pay a doctor, a lawyer, or a business man. All good things to be…. You didn’t say no to the notion of a lease purchase to stop it. But someone did. I did apologize to God for thinking I could throw up on the floor of his thrown room yesterday when I was pretending to have all this figured out. Sorry, God, again. This is what too much TV will do to you. Yea it's kinda sick when you are watching Tinkerbell and there's the Garden Fairy, water Fairy, Fall Fairy, and I say out loud I would be the "bear the weight of the world Fairy", wait that was Jesus. Stigmata Fairy.

Now at 5am, I feel something of a word I can’t think of right now, or maybe I spell so bad that spell check won’t even pick it up…. Anyway…. I was thinking about my family… not just my family under this roof… my family. Jen,Daniel, Me, Kim and Ken…. We have not been together since last July… and one more is missing…my first baby girl… she knows who she is.

Starting to have a hot flash.… can’t remember where my hormone meds are for that.. boiled peanuts, cold sounds good. Pray my sister Anna caught enough food for us to eat tomorrow. Hmmmm brim. Steriods are not under control.

Good morning

Love Heather

Wallace even started to snuggle with her.

Our Penny that we had for a few weeks and it didn't work out except we saved her life when she got sick. She was blind and my new baby. Such a good doggie, miss you Penny.

Medical Update 3/23

noreply@blogger.com (Heather) — Sat, 23 Mar 2013 17:01:00 +0000

Hi Everyone,
Sorry to keep you hanging for a couple of days. Believe me, if had huge good or terrible news you would know as soon as I could type. So the good news is that I'm cleared for hip replacement, which sounds like horrible news, but compared to the pain I'm having now, it has to get better. Little Evalyn will say, every time I come from the doctor, "are you better yet mommy, can you crawl in my puppy house or take a bike rid.?" Breaks my heart. [

The weird news is that I'm apparently the longest living person after a BMT, with my particular leukemia, that relapsed, with this much GVHD, and all the surgeries etc, that Dr. Khoury has seen. I hope that makes me a light to others and leads research in the right direction.

The not so good news is that my CMV levels are high again and I don't know what that means for the short term or long term.The other issues is medical bills that are really piling up. As most of you know, I got all my teeth taken out due to all the treatment I've had. We're hoping my medical insurance will help pay for some of the dental work.

I should be having my surgery the week of April 8th and will need so much more assistance than we've had. We are thankful to have such a good support system of family and friends. Thank you for your prayers and generosity. Please keep it up!

Thanks!

Love, Heather

Medical update 3/5/13 ghost or oven mitt

noreply@blogger.com (Heather) — Wed, 06 Mar 2013 00:28:00 +0000

I knew something was wrong last week. It seemed too good to be true that almost everyone I knew was sick in some kind of way and visiting new doctors offices away provides new germs. Add in my mystery low count, Dr. Khoury going out of town, and not being able to do anything that require moving and holding something. (Try making lunch and getting it safely to the table, thank you Evalyn for not dropping that plate that day) Then the fever, which I don't normally get very many because I run low, luckily we didn't have to go to Emory till Sat morning and Evalyn was already spending then night with Grandma and Poppa Frank. I got there and they decided to admit me and since it was Sat in the clinic I got a room pretty quick on 7E, not may favorite because home is 8E, but close enough. Last time I was here in I was on 5 where I playfully said the "crazy people are." It's just a normal hospital floor where people don't stay very long and there just happens to be a lot of crazy people there. There were people screaming in the hall and they had a lock on the fridge. I was wishing I had a lock on the door.

I used to have the best veins in the south, now sometimes they have to stick me over and over again. I don't get outside much so I play the cloud game with my bruises... what do you say a waving ghost or a oven mitt?

My lovely hip that has to be replaced. It can't hurt much worse than it does.

I thought I would spare you a pic of my toothless mouth right now.

So I've been getting pumped full of antibiotics because an infection could kill me and given tons of fluids, not good cause getting to the bathroom on time is very difficult. I've been in less pain of course because they have the good stuff here. Nah, it's really because there is noting to do so I'm not moving as much.My lung Xray was negative labs are about the same. The oral surgeon same my gums are healing well and have no infection and..... that he feels I made the right decision to get them all out, my port wound is healing well and not infected. I still have this mystery bump on my left arm that looks very angry. Best thing, is I have not had a fever again and they must have a new chef because the food is a lot better. I was able to eat Meatloaf and Mac and cheese. The schedule had to be tweeked and Evalyn got a little sick but never had a fever. It goes to show that I really don't need to around anyone that is sick even though most people just say oh it's just allergies. Yes, I'm still planning on going on my 3 day vacation next week to the hostel in the forest. I haven't been in almost a year. Don't worry my brother is going to.He'll make sure I don't use my cane on the pool table. Yes so what, I might die. Guess what, I might die, or your may die. No sense in the healthy having all the fun.

Going home tomorrow. I miss it so much. The infection... probably something spinning off the cold, yep tested positive for the rhinovirus.... the common cold. Which antibiotics don't do anything for, but for me it could have stopped a spring up cause of pneumonia.

Thanks for your prayers, pray as I go home and try to be patient, wife, and mom.

Love to you and my best friend Jim Banks, thats also in the hospital right now and my sister that is getting better!

Love, Heather

The Three Magic Words

noreply@blogger.com (Heather) — Mon, 25 Feb 2013 04:50:00 +0000

Hi everyone!
I'm not really sure where to begin and it will probably take me a couple of days to write this since I have some serious short term memory issues and a full time job of a medical coordinator/ advocate for myself. Don't forget the 2.5 year old, although she is probably the only reason I am still on this earth, that girl of min is fast, strong, and way to smart for her own good.
A quick medical update.... guess what..... they don't know. That's right, they don't know. They don't know what these cysts are that are popping up under my skin. They don't know if a hip replacement is going to work since my bone are falling apart, so they don't know if I will need other surguries or be lame forever. They don't know if it would be best to take all my teeth at one time or risk getting something call OMJ if my teeth continue to chip away. It's when your on osteoporosis medication and you have dental work done and can cause problems in your jaw not to mention deformities. They don't know why my body is not adsorbing Vit D and in my spine it is the lowest the specialist in Atlanta has every seen. I guess the good thing is that they are not afraid to say "i don't know.

OK so I just stopped writing this post like a week ago, so if I just change tone, I'm not a schizo, no offense if you are....., at least not yet. It could be on the side effects list of the next med they decide to try me out on a new med. Of course, then I will stop taking all of them. That will show 'em.

Last Friday, I made a hard decision to have all my teeth removed in to eliminate the risk of having dental work later on which according to how bad they were, genetics, treatment, and research, there was a pretty good chance the above mentioned would happen to me. They were literal falling apart and to save them would have cost more money and more pain. So I'm recovering and they said it hurts worse the first day but I'm on the third. I'm awaiting tons of appointments having to with pain to vitimin D shots. You name it, I've had it or got or the stats say I will. I just seem to keep getting lucky enough to be in the 1 percent.

On a good note, I'm also lucky enough to know true love and that is what my sweet husband Jonathan has given me. Toothless, in pain, can't walk, can barely read, can't drive, etc etc. He loves me anyway. The things this man does for me you would not believe. Maybe I'm in the 1 percent there too. They can't say I don't know all they want. But I know , I love you, Jonathan Cape.

noreply@blogger.com (Heather) — Sat, 23 Feb 2013 19:01:00 +0000

December Fun....

I do believe that I was in the hospital for part of Dec., ah yea, that was went I got my port out and it was suppose to be just an outpatient procedure and it turned into a traumatic 5 day stay because of some malpractice. I still have to take care of some of this and haven't quite decided what I'm going to do about it, but I can't just let it go or it will happen to someone else.

We had a great time at the Zoo with Sarah, Noah, Evalyn, and Amma had a great time at the Zoo. Sarah's step dad was great to drive us there. We also went to Rock City, walking through the lights are a lot of fun and magical.

Anyway, Evalyn was very excited about Christmas this year. We didn't push the whole Santa thing but didn't not acknowledge it either. She is so sweet and giving that when she woke up and saw all her presents she turned and said " Mommy where are your presents." and then proceeded to want to hand out everyone elses gifts. We were so blessed with love over the last year and we had a great we had a great Christmas.

Sarah and I.... a rare pic since we are chasing afterr two year olds.

This Lion was awesome. He went to the highest rock and roared for like 3 or 4 min.

They call each other best friends.

I love this pic!!

Daddy's Girl.

She got this during the party game and came home and gave it it me.

We went to rock city and the lights were beautiful . Evalyn had her light up shoes on so we could see her!

Add caption

This girl loves her care bears.

November picture blog

noreply@blogger.com (Heather) — Sat, 26 Jan 2013 04:01:00 +0000

We had so mnch fun at the GA game.

November 2010 picture blog

I guess one good thing about the wheelchair that day , we were in the first row..

I had all kinds of stuff hidden in this chair. I didn't need any $8 nachos.

Mom and Evalyn having a tea party.

Uncle Fred came to visit and Evalyn loved how he could talk like
Donald Duck.

Eva;um really started to get silly and learning so fast.

noreply@blogger.com (Heather) — Thu, 24 Jan 2013 07:47:00 +0000

October 2012 Picture Blog

Our sweet girl Just couldn't go on......

My mom was so wonderful and would spend the night with mel

Oh my sweetie, once he was at the hospital as much.

Strawberry Bottom

My aunt Sheri took a turn learning how to make a balloon dog;

My cousins getting ready for the tot trot. She got a metal.

Evalyn crossing the finish line with Jonathan and her Ama.

My cuz Andy, always up for coming to see and bring foot. If you think this next brace is horrible you should see the big one.

Evalyn just doesn't see as competitive as the other children.

Halloween, or at least , near it. .

We went to a church that had trunk or treat..

Evalyn liked my toe socks.

We love drawing pictures and painting.

My mom, me, sister, and Evalyn stopped to buy pumpkins and I got some local honey.

Our new puppy, my brothers, Lexi.

Still able to kick with my Right Leg

noreply@blogger.com (Heather) — Thu, 17 Jan 2013 20:13:00 +0000

This blog has taken weeks to write this blog. This may be a really depressing for my first post in a while, so if you are close enough to me to already know what all has been going on... just don't read it. I know 1/2 of you probably think I'm still in the hospital, dead, or worse..... captive in a house where almost everything that needs to be done around me I can't accomplish either due to my physical limitations, doctors orders, on the toilet or have my beautiful little girl asking me to play with her.I'm just so slow with everything that as Evalyn gets older I seem to have less time to write. By her naptime, I have to lay down sleep, or call all the doctor's offices, schedule sitters and rides, try to remember what type of medication I have forgotten to take and try to make some money in my booth with my art and items,, that God told me to do...... hello God are you there.... or are your little care bears staring me down with a new diagnosis ???? Yea, lets just say I'm a little angry with God at times and that is hard to admit when I really want my life to be an inspiration to others so at least this hell on earth will mean something. I'll come around like I always do. Everyone that has read this blog, all the horrible and/or wonderful details and prayed for us and supported us didn't deserve a silence treatment from me. And honestly, I don't think it has been healthy to not share and not write it out so that it does become so real that I have to deal with it. All I can say that the last 3 months have been hell and maybe that is why I could not write. . The beautiful times were just that wonderful and I have had many. I should have shared those also. I think I wanted to make myself believe that no one really cared about the details anymore. You know when your in and out of the hospital so much, people stop coming as much or at all. Even people that said they would be by your side no matter what. It just happened... peoples lives continue to move at a faster rate while, as my Granny says, being held together with pills and scotch tape.I do understand, it's a long drive, and when I'm in so much pain I think it's harder for the person watching.

I think I have had 4 hospital admissions since October. Memories in and out of the hospital are not in order and very blurry. I figured if I couln't tell you what month something happened in that maybe I had no business sharing my obvious IQ decline. Now I keep up with the days of the week, the day, and the month using Evalyn potty chart where we put stickers and stamps. How the child will ever get out of diapers as long as I am in them, I do not know.I'm really having to face the reality that this is never going to be completely over. For the rest of my life I will be following up to see if the cancer has returned, if the treatments have given me other cancers, and I will always deal with the side effects of the medications and treatments that saved my life. Learning to deal with this has been so hard. How naive was I to think I would have the BMT and then if it worked I would just be fine. Of course, my doctors knew what could happen and there would be side effects but I agree that giving someone too much information at one time can hinder treatment. Something good that has happened is I have finally gotten some of the weight off that the steriods were causing. I still have my chubby cheeks and budda belly but I have lost 40 lbs of pretty much water weight.

Some things I'm dealing with physically ..... I heal very very slow. I still have wounds from last summer that are not completely healed. I have a wound where my port was taken out and then not taken care of properly in the hospital is not healing well. I have the "port story" that was pretty traumatic that I will tell you here or in another blog. Anyone want to offer you legal advice for free out there? It seems that my osteoporosis increase it rate of chipping away my bone overnight. All of a sudden not only will I need a total hip replacement, knee replacements one day, but I had fractures in my spine, couldn't lift my neck and had to wear a huge neck brace just to keep my head up. I had two surgeries on my vertebra that I'm glad to say worked and I'm sitting up straiter than ever and do not have pain anymore in those two areas. However, although the T7 and T8 are stable at this point my T5 is totally crushed and the only thing they can so about that is pain shots, burning nerves, and major surgery involving rods. Not sure about my neck yet, have to get a new doctor, the last one was a real jerk and didn't even examine me during my 40 visits. The wounds and bone issues of course led to home health and PT to put more layers on a cake that is about to tip over.You never know whenthey are coming and if you miss then, well too bad. And for another cherry on top.....I'm going to lose many of my teeth very soon. Not that I was ever fond of my God given teeth, they have always given me greif, but I didn't expect to lose them in my 30's. My new ones will look a lot better but pray I don't lose them. Someone I'm close to, lost thiers for a while and finally found them in a shoe.

Oh what else.... I still have GVHD, meaning I still have the eye issues which will probably lead to cateract t surgery if I want to continue driving, which I'm just starting to do again, but not far. I get so tired so easy, Jonathan is afraid I won't make it back if I go too far. I'm not too afraid of anything anymore except being useless or a burden on others. I also have GVHD in my gut which means lots of sickness and have add random vomitting to my list of bad things that can and will happen in public places. I have this cough that will not go away. I feel that I have had it since the BMT. I have GVHD on my skin and I'm in my second session of an outbreak and boy does it itch. I have a weak bladder now and sometimes don't get through the sentence of " I gotta go....." Great. Scars.... I have horrible scars, I'll leave it at that. I have a blood clot in my heart that for some reason they do not seem too concerned about because no one has followed up to see if it has change or moved since I have been taking these painful shots each day. Menopause or medication hot flashes are killing me on top of everything else. I will just start sweating so much that the hair I have will be soaked. I'm sure there is more, I'm sure they will find more. It seems that it is very up to me to request follow ups and to be referred to physicians. My main doctor at Emory is a BMT doctor, not a whats going to happen in the next 5 years doctor. There needs to be so much more research in this area. I'm been looking at something that was in Cure magazine the last two months. It's called a Survivorship Care Plan. I would meet with someone and get evaluated and based on tests, what side effects I already have, aging, research, etc we would come up with a plan on how to survive life after Cancer. I know there is a place in Texas, but I have a lot more to learn about all that. I just don't have much time/energy to do it right now, but that is one of my goals.

Personal Life and of Dearly Loved People..... I think I told you about my Uncle passing away. It seems to be most difficult for some that were the closest to him. We could talk about anything because neither one of us had any dignity left and went through the same things. Someone I love is going to prison, someone I love is pregnant and it's not the best idea, Someone close to me attempted suicide someone close to me almost overdosed in my arms, any marriage that goes through something like this, the weak areas are exposed and have to be dealt with or walls will be created, Many people I know are aging and in pain and I want to be able to help more, I don't want to lose them, a family member has had major surgery and been in bad pain with a long recovery, understanding some of how our finances are affected due to medical bills, we had a grandparent pass away, I miss my siblings. I have to rely on others for most everything that a normal 32 year old can do. But is it not hopeless.

There are so many people still helping our family. They are such a blessing and without seeing some kindness and compassion, surly there would have have been a point that enough is enough , smother me with a pillow already if I can not find good in the world. But luckily there has been people who have given us money, let me cry on there shoulder and even pay for cleaning. People are still making us food at times and it is a huge help. Those that have fallen in love with sweet Evalyn Rose are always in for a treat. She is truly a blessing. More on her amazing discoveries coming soon and of course pictures.

Well that's all I have time for now. Thank you for your prayers and support.

Love Heather.

Medical Update

noreply@blogger.com (Heather) — Fri, 12 Oct 2012 01:14:00 +0000

(A Guest Post by Jonathan)

For those of you who don't know, Heather is back at Emory. She came here because of uncontrollable diarrhea and intense pain. Her lungs became of concern because her coughs sounded a little crazy (like possible fluid in her lungs). Well, that turned out to be nothing... and her diarrhea is better (because they aren't letting her eat), but now there's another concern.

The docs saw a spot on Heather's heart during a scan of her lungs. They did an ultrasound, and they found a 2 cm long shiny object in the right atrium of her heart. They have absolutely no idea what it is, but it isn't a tumor, since it's shiny. They are doing an EET (an endoscopy of sorts with something that can see her heart closer up) tomorrow, and we should know the results soon after. If the results are not conclusive, a special kind of MRI will be done to get even more results. After that, we will know if surgery is needed to remove it.

Another unknown. Another crazy medical mystery. Another crazy day in the life of the Cape's.

More Day by Day photos and paintings

noreply@blogger.com (Heather) — Wed, 05 Sep 2012 05:25:00 +0000

This is just a short blog of art I will be having at Day by Day, on my website when i finally get it finished, and hopefully somewhere that people for silent auctions, etc, can go for the time being to look and see what types of art they could sell in the store. For those of you that don't know, I canceled my art show in September because there were too many darts, but there will be other ones. Right now, I'm trying to be chosen to be part of a silent auction for Be the Match since, especially since I haven't be able to really raise any money due to those dangers. I been busy putting on my body armor the Lord made for me. Please if you plan on singing up for the run/walk/tot trot/volunteering, don't wait. We will send you post cards to hand out and you can promote under you own name as well as the team. Remember, you can always just donate and we need a lot of volunteers. Most of all we need more donors to save lives We are going to have great entertainment this year: music, dancers, kids songs, the tot trot, and many more fun events. You can go to our teams BE THE MATCH FUNDRAISING PAGE.

The following are some of my photographs and painting I plan on getting matted and/or made into note cards. At this point it depends on what is chosen for the auction but most will be available through the website and booth. Excuse the camera quality on some pictures, I’m still trying to figure this thing out but will replace them with larger pictures as I take better ones. Also remember to look back at “older posts” where there is some of the recycled jewelry and that I can personalize Item. I love wearing the coke a cola earrings with picture of my puppies.

shoeew

noreply@blogger.com (Heather) — Thu, 09 Aug 2012 22:42:00 +0000

Wearing her mama's shoes

Sleeping with pawpaw

She helps her mom by rubbing lotion on her feet

She gets money for helping.

On the top of Stone Mountain with Her Aunt Anna

She loves her pink shoes

Heather is at Emory

noreply@blogger.com (Heather) — Tue, 07 Aug 2012 22:46:00 +0000

(An update from Jonathan)

Heather came to the hospital at Emory this morning. She came for pain (in her hip, back and neck) and other symptoms, but they found that she has a perforated bowel.

The surgeons don't want to do surgery on it yet. The docs are giving her antibiotics to see if that "clears up" anything, and they will access her for 24-48 hours before they make a decision to operate or not.

Also, they are concerned about her nervous system. They will do a spinal tap sometime soon to see if she has Leukemia in her spinal fluid / brain, or to see if there is any other nervous issue.

And the doc just old us that there is some Pneumonic evidence at the base of her lungs.

So we are waiting, and praying, and hoping that the docs make wise decisions and take care of her...

(I know lots of people want to show their support, but please don't drop by without calling Heather's mom or myself... and please don't call Heather's cell more than once. She probably won't answer... and most likely won't listen to voicemails for a few days. If you want updates or want to send her "well wishes", please text her or call/text/email me [jonathan_cape@yahoo.com]. And you can check facebook for periodic updates. Thanks for your help with this, because Heather needs her rest, and needs to be in a germ-free environment.)

Medical Update: At Emory

noreply@blogger.com (Heather) — Mon, 30 Jul 2012 14:40:00 +0000

(Guest blog by Jonathan Cape)

I was supposed to update Heather’s blog on Saturday. Whoops!!!

It’s been a crazy week. It’s been so crazy that Heather has not even updated her blog in over a week and a half. So I am writing to give you the lowdown. This blog won’t be creative, witty, or even clever in any way… just purely informative…

Heather is in the hospital. She went to Athens Regional on Monday, and then they took her to Emory on Tuesday.

Why she is in the hospital:

1. Her feet are so swollen that one of them is leaking fluid. There are 2 spots on one of her feet that are seeping fluid just as if they were a dripping faucet. It’s one of the craziest thigns I’ve ever seen.

2. She is in pain. It sounds like she isn’t in as much pain as she was when she went in… but the pain has been pretty extreme. And the pain is in all types of places.

3. Her neck is messed up. She is having a tough time keeping her head up. There is something wrong with the C4 and C5 vertebrae. The docs will be fitting her for a neck brace… and a surgery may be required at some point.

4. Stomach issues. Her stomach issues are still going on. There has been no relief for that.

So, all in all, it's been a tough week. I was even out of town for business when Heather got admitted... but Heather's family was awesome and took care of her and Evalyn so well. I appreciate all that they have done and are still doing.

-Jonathan

Medical and Mental health 7-19

noreply@blogger.com (Heather) — Thu, 19 Jul 2012 11:52:00 +0000

I just got finish reading Our Daily Bread. I feel that it relates to me because lately I have been putting on this front that says I'm ok. Well, I'm not ok. My sense of motherhood is not ok, my yard, my feet, oh Lord are not ok, the fact that I'm wearing adult diapers an can't make it to the bathroom is not not ok, my uncle Frank dying when the treatments, not ok, My Grandma Bobbie being 5 doors down from where her son was is so sad to me. My body hurting to the point of having to take pain medication is not ok. My husbands job sending him out of state for a week, we just found this out yesterday, is not ok. I can't even take care of myself. My booth loosing money last month, way not ok. I hope to have the website up and hopefully talk my boss into letting work via home or internet to promote our store.... maybe ok.

Not you have not thought about it before . "Maybe I'm just a burden." or lets just shoot it straight " I don't want to live through this pain anymore. " Yes, jen, I' m being a Negitive Nancy. I have so much on my "plenty plate" I can't keep up. I can't remember to take all my meds, I've lost some medical items somewhere on my trips back and forth. Now, I can't remember to take all my meds, get my daughter up to her free dance lessons, make myself pay 40 dollars for extra follow ups.

Wearing one style of shoes for the last few months, although they are cute are getting harder and harder. Finding clothes that fit me, well, that's really depressing.

I know all this sounds awful, but it is the truth. I'm so depressed and have never wanted to not get out of my bed, except I may be pooping in it.

Happier news and pics ahead....

FYI, no interventions please.
Love,
Heather

Fun summer time pic blogs

noreply@blogger.com (Heather) — Thu, 19 Jul 2012 03:54:00 +0000

SUMMER FUN

Near the first of June and my sis and bro came out to hang out and watched one of my frrst open mic nights.

What is that Mommy?

Fun in the sun at my parents house.

How sweet!

Evalyn loves to help and is helping put lotion on my feet.

She had to get dressed up to watch Annie.

The Monestary of the Holy Spirit

We went to the Monestary in Conyers for a couple of nights, we enjoyed the services and the awesome food.

Daniel did a great job with learning to drive a stick!

My 32nd Birthday: We went out to eat and then I played at open mic night.

Verna and Vic... Evalyn loves when Verna babysits her.

Evalyn's favorite activity was the painting.

4th of July

My helpers did a great classic job with the gold carts this year. Thanks for all your help with Evalyn too!

I can't beleive how well Evalyn did with the fireworks. We watched the end of Annie lot and really talked to her about how loud it would be. She was clapping and laughing.

Two giant cat fish.... I just got one little brim.