So I have the big “C”

A few months ago I was diagnosed with Breast Cancer. I couldn’t believe I really had The “Big C” . I remember joking with my older sisters, I have two of them, about that when I had my very first mammogram a few years ago. I had never had one and since I am very large breasted they needed to do a compression mammogram, my very first time out.

Of course in my head I was freaking out, that was the reason for all the teasing and convincing them I way back then was sure I’m dying , I would dramatically state. That was about 5 years ago and I was healthier then. I didn’t know how healthy I was. But I was much heavier than I am now, I couldn’t get my much needed knee surgeries and I felt awful.

I still have yet to get those knee surgeries, however I have lost a ton of weight and that has helped a lot, I still have a bit to go but as I am very happy with my progress I take the slow road, I know that I have make real lifestyle changes, this is what will matter in the long run.

Fast forward to now, I felt a lump around 5 months ago. At first I thought it was nothing and would go away, after 2-3 weeks this starts actually getting bigger. I realize that everything I have read leads me to believe this could be cancer. So I use my past knowledge and decide I better tell my best dr. Which is my rheumatologist. She right away sent me for a mammogram, they sent me for a biopsy, they sent me for an MRI and right away I was diagnosed with Invasive ductal carcinoma, Stage 2 . I guess for me some parts of the Pathology are good and bad considering. The good was that it’s all treatable and curable. The bad is it’s aggressive and likely to come back.

I was fortunate to be seen by a great team and was scheduled for surgery with in just a few weeks from diagnosis. By the time I was healing up and getting my appointments with Oncology and Radiology the tests were starting to come back for the doctors to be able to give me some accurate statistics to go by.

My options are really clear, if I don’t do the Chemotherapy and radiation this cancer will likely come back very quickly. If I do them I will most likely beat all the cancer I currently have and knock down reoccurrence 90%.

Looks like the odds are basically laid out for me. Being no-one wishes to do this kind of stuff, I will say I am not really too happy about it either. The doctor said it shouldn’t be too bad though. Just 4 cycles of Chemotherapy and then I think 3 weeks of Radiation.

I know lots of people of who have handles much more, I know that I just need to stay as Positive as I can. I need to hope to get through it quickly and maybe I will get lucky and not wind up a bald headed chick. But if that happens then well I guess I will cut it off buy a cute wig or two and rock that ?

I think that losing my hair -as vain as it sounds might be one of the things I am concerned with the most. I feel like I have had long hair a very long time. I don’t know if I hide behind it because I have been up and down with my weight for most of my life and I have serious anxiety issues . Somehow between the two I think like anything we all hide behind something. I hide behind my hair , just a little bit.

This is the beginning of my journey.

I will be starting Chemotherapy this upcoming week after some bones scans to ensure no spreading of the cancer.

I hope to have people come along this journey with me , since I have decided I am going to blog about it. A way to share my experiences, a way to attempt to stay positive. A way to see what it is like for me at 50 with everything I have already been through, to now kick Cancers ass.

Well cancer looks like I’ll be training on the regular so I hope you know who you are messing with cause this crazy chick isn’t going down with out a knock ‘em drag out…

So let the games begin….

Adding a few more worries!

This week is moving week. I have been packing for days and although I am almost done, there is still plenty of work to do.

I have not been looking forward to this move as I am putting my stuff in storage and staying with my Dad. After 25 years of living on my own, I am kind of sad that I have to pack it in a move home. I have been stressed about it, but have recently decided to look at it another way.

I have decided to see the good in it. I will be able to start saving some money, I will be able to not have to worry about lack of money and I will get to spend a ton of time with my Dad. I will get to live in a very nice area of town and I will be safe and loved. (of course so will my kids)

I always felt like I did not want to burden him. I know it will be an adjustment but in the long run it is short term and I jumping from one bad rental to another bad rental is just becoming silly at this point. I do have some concerns that my dog will be a nuisance to his dog as mine is much younger and a lot more energetic. Maybe it will all surprise me and they will become buddies, I hope at least.

I have not been able to work much the past few years, due to my daughter’s chronic illness and needs and my own medical needs. My knees are shot and my anxiety and depression were taking over full force. I have since started on a new medication and it is helping me to be more focused on what is important in my life. My family. My Health, their health and so on.

My daughter’s health has been a challenge to balance since the day she was born just about 13 years ago. She has Vater Syndrome(VACTERL Syndrome) Chronic Kidney disease and a whole bunch of other health concerns.

She is currently about 1-1/2 years post Kidney Transplant. She has had a lot of challenges in the past year or so but so far her Kidney seems pretty happy. She has some  virus issues that come and go and a constant battle with urine infections due to her lack of a bladder. At the end of next month we see Urology and they will make plans for surgical intervention to try to help with these constant infections. The procedure is called a Mitrofanoff and it is a long and complicated surgery at the time they will create a bladder for her and make a passageway using her appendix to allow for proper urination. It is big, she hates thinking or talking about it but it is truly starting to become an issue that is is not done already.

Yesterday was her monthly lab day. Although she was just discharged from the hospital last week and is just now finishing her round of antibiotics it seems something else is brewing. Her labs are off, her numbers are heading in the wrong direction and she is looking at another possible admission on Friday when she goes back to have a minor procedure(stent change) and repeat labs.

We are moving on Saturday so this could not come at a more complicated time, but hey that is what we do, complicated. I feel so sad thinking that the kidney could truly be acting up, but the doc said no panicking, it is not time to panic. It is time to watch for things and time to take care of the urological issues.

I would hate to think she could go through all this and potentially lose the kidney anyway. My poor little girl should simply be getting ready to celebrate her big 13th birthday. She should be ready to finish up school for year and enjoy staying at Grandpa’s where she can actually use the community pool as it is very clean and very well supervised.

Well I guess my worry hat is on this morning, but since she is in school , luckily she is not paying any attention to me. Hopefully today will be busy and distracting so we won’t be thinking about it much and hopefully I will close my eyes and my kitchen will pack itself. Yeah, I doubt that will happen but wishful thinking. As a Charmed fan, I wish I had that powers to move crap by just saying the name of the items like Paige does.. Yes I watch way too much TV!!

A wish for today…

 

My wish for today is that everyone take one second to be thankful to that Mom, Dad, Grandparent, Aunt , Uncle, Teacher, or whomever taught them to cope with things. To learn to accept life on life’s terms to be good to one another. In the end of life the only that will be said at a funeral (what your legacy is) is the kind of person you are. No one is saying wow they had an awesome stove and what a lovely yard they had. Do you know how many great jobs they had. What will be said was how you treated others , how you impacted others and the type of way of living you lived. So make your legacy one to proud of.

In my 25 years as an adult, I have learned so much. I used to think working all day and being able to buy things was the most important. Then I started having kids and I learned loving and caring for them and teaching them is most important. Then my youngest was born with VATER(VACTERL) Syndrome and I learned even more about life. I learned how to be a caregiver, and advocate for her health and so so much more. I have an honorary nursing degree as I fondly call it. I could go on and on about our experiences and sometimes I do but today I am just thankful to have learned the importance of simply being there. The importance of listening and the importance of hearing what you are listening to. The other day my daughter was having a rough time, she is noticing that all of her peers are so much taller than her. She is realizing that the medicines she must take make her face puffy and there is not much she could do about that and it is giving her some self doubt. I believe that is pretty typical type emotions for one turning the big 13 in 2 weeks.

She was telling me her concerns and I tried to respond with a joke. I thought perhaps it would lighten her mood and distract what was bothering her. Joking and laughing is one of my coping mechanisms. I would rather laugh than cry although sometimes inside I am crying while others see me laughing. It works not always but a good part of the time anyway. This time it did not work, she said Mom you are a clown always laughing but I don’t find this funny, I am feeling like and she explained herself. I immediately told her she can tell me anything and I will hear her out and try to find a way to make her feel better and if I can’t than well I can’t but at least she can get it off her chest. I let her rant for a good ten minutes and then I told her that somethings in life we have control over and others we do not. The things we can control we should and sadly sometimes we must accept the things we can’t and if there is a way to make those things a little better, we should at least try. This seemed to help on this particular conversation. I was proud of myself for knowing I had to turn off my coping mechanism and hear out hers. Had someone along the line not teach this to me maybe our lives would be even more of a mess than they already are. That night she hugged me tight before bed and said she is kind of glad she is small so she can still snuggle with me.

If that is my only legacy in life was that I loved and was loved, truly that will be sufficient!

 

Team Angel- Spinal Fusion

Thanks for the reminder Vater Syndrome!

These are the Before and After X-Rays of my daughter’s spine. Actually they are after and before as the pictures are posted.

Just last week we had her spinal fusion done. It was about a 4 hour procedure, although this is Angel we are talking about so you probably already know it was not really 4 hours. We got to the hospital ahead of time about 5:45 am and the day hospital opens at 6. By 6:20 they are looking for a good spot to put an IV. I explained to them she is a very hard stick. Even though they heard me they really were not listening to me. Not one of the 4 nurses could get a good vein. Don’t get me wrong the nurses found veins. They just did not work from all the scar tissue. The reason I tried telling them she is a hard stick. Eventually the Anesthesiologist Doctor came in and popped one right in an artery. I guess he can do that. At this point she was slightly overwhelmed but she is getting older now and learning to deal with the fact that she can’t stop all the doctors and nurses to come in when they need help. That is overwhelming for Angel she hates that. At home(TGH) they know that, at The Joes as Angel calls it they are learning.

So now the procedure is supposed to start at 7:30 and in fact they do take her back at that time. The nurse told me I will call you once the procedure actually starts and then each hour until it is completed. I was happy with that. I figured I would be less stressed getting the calls. I go back to the waiting area with me son and a gentleman from the hospital approaches me and asks if I would be willing to be part of their pilot program , updated text messages. I thought it was a great idea so I agreed. Now time is passing, My Dad shows up, now we are sitting waiting, my son, my Dad and myself. I am starting to worry why have they not called out yet? What is going on? Finally just after 10 am I get a call from the nurse explaining that the procedure is just now starting as they could not find a spot to put a central line, All of her access spots are shot and they struggled to find one.  It truly breaks my heart as I told them this from jump.

In any event she was comfortable and did not know anything going on as she was already sedated. Each hour or so they called out and each time assured me she was doing great. I also received a few text messages in between so I was super informed. I think the texting is great as it is not as scary as the phone some how or another.

When she first came out of surgery we were fortunate enough to know the recovery nurse. She has known Angel since she was a little baby and was quite familiar with her past health experiences. She recognized right away that her potassium was way too high for a Renal patient and immediately worked to get that reversed. By that evening her lab were almost back to normal. That was a good thing as any stress to Stevie(her transplanted kidney) is scary stuff.

The next two days were spent managing pain , only to wind up having a reaction to one of the IV pain meds so lots of steroids and benadryl and eventually figured out another pain plan. By the third day she was out of the ICU and on the second day of Physical Therapy. By day 5 we made discharge plans and have been continuing to heal at home. Aside from the obvious pain she is doing wonderful.

We are already noticing some differences, such as she is taller, her ribs are no longer sticking out in the front and back making her shirts fit wonky as she says. She said no longer feels the pressure in her lungs she was feeling from the ribs pushing and she is now practicing being straight which is quite different than it feels.

I knew this would be a big surgery, I was not surprised by the amount of blood she needed, or the issues getting the correct plan for pain. I was totally surprised by how quickly she was able to shift herself and put full weight on her legs.

Tomorrow she goes to get her stitches out and speak with the doctor about the amount of pain she is still currently having and the best way to manage it and hopefully get clearance to go back to teleclasses as the more you miss the harder it is to make up in school.

@TeamAngel

One Less Doctor

The following article was written by CPR Podcast. I shared it as it is a description of a Cardiac medical condition that my daughter had. When she was born they told us she may have some cardiac issues. They only ever discussed a heart murmur. Then when she was 3 they found that she had WPW- Wolfe Parkinson White syndrome. She had an extra pathway in her heart and it caused her heart to race and potentially could be very dangerous if not properly handled.

I came across this article this morning and wanted to share it as this week , we got exciting news from my daughters Cardiologist. He has officially discharged my daughter from Cardiac care. He stated that is just about 2 years since her Ablation and she is not showing any signs that the pathway has returned. He of course will be available if she needed him but as complicated as she is any progress is giant progress. Thank you CPR Podcast for the medical description of this condition. 

You are dispatched to a residence on a report of a child with an altered mental status. Upon arrival, you find an 8 year old boy lying on the couch responsive to verbal stimuli. His mother states he had been playing outside today when he came inside and complained of extreme weakness. He laid on […]

via Pediatric Tachyarrhythmias — CPR PODCAST

So now they tell me, ugg….

My daughter has been taking a medication for her Gastroparesis, a disease where the muscles in your stomach do not cooperate. The muscles fail to do their job causing the food in your stomach to just sit there. It takes many many hours to digest and what it does not digest you are likely to throw-up. My daughter takes this medication called Reglan. Reglan is supposed to speed up the motility doing the job the muscles are failing to do. She spends a ridiculous amount of time throwing up. The poor kid and I joke about are you sure you want to eat that, think about later when you throw it up. It sounds gross but what am I supposed to do allow a 12 year old to feel bad about this, obviously no, so joking gets us through and well lots of trips to lots of doctors also keeps us going. So yesterday we finally went to see the GI doctor. There is always some issues with these doctors and us. Either they cancel us due to doctor emergencies or we cancel them due to my daughter’s other health issues. Well we finally saw them outpatient. I am talking with them, explaining what has been going on since discharge and what we need their help with. So she asks me how much Reglan are you giving her. I explained she was discharged with 7 ml 4 times a day. She said that she needs to be on a much lower dose as higher doses cause involuntary muscle spasms that can become permanent, there can be other neurological issues but mostly more throwing up, diarrhea, nausea , fatigue, restlessness and on and on. Ugg wouldn’t it be nice if they would tell you about all this crap before, She is constantly tired, constantly having tummy troubles she complains of cramps and pains in her muscles and bones and this medicine can very well be contributing to all of that. Now we know why I let Nephrology handle everything as they warn me knowing how tricky she always is.

The good thing is now she is on half that dose and although we just finished cleaning up from an episode she feels better and we have scheduled an endoscopy to see if we can come up with a reason for the throwing up that may not be the gastroparesis. They can treat it with antibiotics but I think that is a bad idea as she already has very low immune system from her Kidney Transplant and she takes antibiotics daily from that and she is constantly with the urine infections so they are always treating her for that.

Well the life of a Vacterl Association kid is always going to be complicated. Glad at least she has amazing spirit and is fun to be around. I tell her all the time, kid I have cleaned up more of your stuff than the average parent you better be nice to me when I get old!

#TeamAngel

Team Angel- 1st of series…

I have written before about my Daugher Angel and have shared some of our lives. Thingscontinue to be complicated with my girl. She is now 12 but she is turning the corner towards 13, as she adorably tells me. In the past 2-3 years my family has been through a lot of change and we are trying to work towards what will be normal. When we get there it will be time for my son to head off to college I hope or whatever is going to be his future. My oldest daughter is 23 and lives on her own now.

Just about 3 years ago we were moving out of the house we had lived in for 8-9 years. We were moving to a totally new neighborhood to a better house and schools. No sooner did we move into that house than we found out my husband had Terminal Brain Cancer. We went from finding out about this disease and watching this disease eat him alive. I could actually write an entire series about my relationship with him. He was something else I used to call him Shenanigans as he was always involved in something. Building this, moving that, fixing this, breaking that. He was a good spirited man who had a lifetime filled with mind damaging emotional baggages. He fought through his life by outweighing the bad with the good. Somehow he stole my heart with his unique ways and truly fun to be around. During the time he was sick only parts of our lives could be altered. Angel still needed to go to dialysis and take care of her medical needs. She had Spinal surgery( the same one she just had 4 weeks ago today) the day after her Dad had a brain biopsy. There were 6 weeks where I would take Angel to Dialysis get her hooked up, drive home 45 minutes and get him and my oldest daughter who would take care of him and get him ready, off to radiation then we would usually all go home together, unless one of them needed to be admitted and then my oldest and I took turns driving back and forth taking care of everyone.

He passed on 9 months after diagnosis. Angel went to dialysis the next day. Some people think so what it is routine for her she has been doing this since she was 4 years old. Dialysis is not routine, you make it part of your routine. Any day, any treatment can go from relaxed and laughing to throwing up, or getting fever. Can go from feeling great to needing fluids, because you are crashing. It is a toll on the patient seeing their blood go in and out of them for 3-4 hours, Angel was on 4. It is also difficult on the family members who go with them. They have to hope for good days, hope there is no problems with the machines, or the water, or your access. Then your 4-5 hour day turns much longer. Angel went to dialysis the next day. We came in the afternoon instead of our normal morning the nurses said it will be quieter and be better for her to not be forced to deal with others so quickly. Her dialysis center is her comfort zone. She has grown up there and has been loved by the nurses, taught by the nurses, teased by the nurses and nurtured by them. They have been the same team for a long time and each brings different personality and experience to the unit. It makes for good outcomes during treatments, they notice something is off sometimes before the patient themselves. They also know the I have a tummy ache please play with me to the real let’s call the doctor pains. It is a comfort zone that only a person who experiences should know when they are among good people.

So back to Angel 5 months ago we were told that Angel has the BK virus. This is a virus a lot of people carry. It is likely it came with her transplanted kidney. She has not been able to beat this virus. They have taken her off this medication, started her on that and so on. It came down to Infusions every two weeks. During that time she caught many urinary infections. She was running low grade fevers on and off and something was not right. She was admitted many times. Each time the stay was about 10 days. She had the first of her spinal surgeries. Although there was complication during surgery she seems to be better from that each day.  2 weeks ago she was admitted to the hospital with terrible stomach pains, low fevers, throwing up on and off, no appetite and non consolable kind of pain. Once we got to the day hospital , the pharmacist who knows us for a very long time said, called the doctor immediately when he heard her cries. He said Dr. P, this is not Angel she does not cry like this. It took 10 days or so to figure out what is truly wrong with her, so much tests. So many things ruled out. We finally got a diagnosis. No wonder she is screaming in pain her native kidney is filled with cysts and totally infected. So now we have a source but what do we do about it. She is still with fevers and terrible pain so how do we proceed. Infectious disease is helping with antibiotics and surgery has weighed in on the we don’t want to take it out. They have already done the following surgeries on that area of her body:

Colostomy

2 Reconstructive surgeries

Colostomy reversal

Kidney  Transplant

Kidney transplant removed

Kidney transplant and Urostomy placed.

She has had many other surgeries but they were on the other side or her back or other body parts.

So now for them to go back in and take out that infected kidney is going to be very hard on Angel and very hard on the surgeon. They will do what they have to for Angel but what does it mean for her health. On Wednesday we will re-evaluate blood tests, inflammatory markers and something else and then a plan will be formed from there.

My daughter is one tough kid and she is no crybaby. They wake her up for blood work and she just fusses about the light coming on. When it is time for meds the most she will do is grunt and sit up. When she is feeling good we go for walks, if she is hungry which is not often I get her whatever I can that she likes. If she wants to play or do arts and crafts we do it but a very good part of the time she sleeps. She likes when the family comes to visit it makes her feel like she has people pulling for her.

She has been really surprised this admission with all the terrible pain and all the crap she has gone through, she has had some good come with it. She won a school raffle and won an IPAD Mini with a case, headphones and an Itunes card. That was so awesome for her she is loving it. Also a friend of ours did a fundraiser with the company she works for and they get her a new outfit and a donation that will be coming. Not only was it something fun to be part of it made her feel loved. People that know her people that don’t were sending her messages.

So hopefully wednesday we will get a good plan. It breaks my heart listening to her cry in pain all night. Some nurses are wonderful and know to have the meds ready that she calls out every so many hours and  others want to go through the process when she is already screaming in pain. I know some people will follow all rules but when in Peds, the rule are meant to be broken when it comes to pain management and comfort.

Today was the first day that she attended Teleclass in over 2 weeks and she was hoping her teacher would come down and see her today also, although it is not a scheduled day.She gave me the greenlight to come home, grocery shop for my son and shower and come back. I am cheating taking a little me time to write. I am glad I can type quick 🙂 .

 

Check back for updates about Angel

if interested you can follow her story on Facebook

https://www.facebook.com/teamangelraye/?fref=ts

 

#teamangel

 

 

 

 

and the journey continues….

I have been blogging about my daughter’s health conditions and her journey’s for quite some time. I don’t have a very big following but that is ok. I am good with whatever comes as it makes me feel good to share her, our journey. It helps me to speak about things, hear it for myself and I enjoy writing sometimes.

While everyone all over the internet is going crazy talking politics, I am mostly quietly sitting in my daughter’s hospital room. I am likely to be doing something for or with my daughter or chatting with our hospital family as I call them. This staff of amazing people that truly continues to grow. This admission has been 10 days so far or maybe it is 11 I can’t even be sure. We have very high hopes of discharge tomorrow and very much looking to be home.

We initially went into the hospital for stomach and back pain and throwing up. She is now 8 months post Kidney Transplant and is having some complications. She has BK virus, which I have written about if you would like to know more, Somehow this particular virus likes transplanted kidneys. It is trying to take over but the doctors are like, nah we are really not going for that. So they have done a few things to try to get it to go away but it is still there and putting up its fight. It is quite likely they will reduce, stop or change what little anti-rejection medication she is still currently taking. With this many things can happen, what we would hope for is that her immune system would increase on its own. We would hope that her body would fight it off. If this does not happen there are not too many options and it is likely it will damage the kidney. I have learned from other families that they have experienced this and the kidney is still hanging on, they just have a lot of complications.

During this admission she has undergone, 3 ivs at least 15 blood draws from all up and down her hands and arms,  She got two shots of pain medication before she could even get an iv placed, she has had kidney ultrasound, and nephrostogram and stent removal and replacement. She has had x-rays to her stomach, a head MRI cultures of everything they could culture and finally the gastric emptying study.

I will hope for the best and understand it is not in my control. I can only do what is best for her and let her have fun and enjoy life.

We found a source of her stomach issues by doing a gastric emptying study. It took about 5 hours, she had to eat some scrambled eggs with some radioactive stuff in it and then take x-rays one time an hour starting 5 minutes after eating. This shows how quickly the food digests and looks like it is very very slow way more than normal. They are going to add a medication to see if it can help with that. Should resolve the stomach pain as long as she is not throwing up or anything else that has been on and off for a little while now.

I am pretty sure she is heading on the other side of this urine infection that she has. She is getting annoyed being in the hospital and when she does not feel good she does not want to be at home wondering if she will go to the hospital she would rather just go. So when she starts feeling better she looks forward to coming home. I decided to come home tonight as it was midnight and I just need to sleep in my bed. I have two knees that need replacing and some joint pain throughout my body and I can do 2 nights in a row but the third night if she is well I come home.The chairs that open are tolerable but the older I get the harder they are to sleep in.  She is 12 and totally has a blast with the nurses when I am not there. Some of the nurse’s and tech’s have cared for her since she was a baby. The interventional radiology department , knows her so well that they sedate her for procedures quite regularly and they are on first name basis’ and she is totally comfortable in their care. She has nurses that just come in the room to get hugs from her , just because. That is the amazing part of this whole journey. It is about the love. The people who come to work to survive their own lives and actually work diligently to save other people’s lives. It is beautiful and amazing and rarely appreciated.

Social Work, worries about paperwork. Make sure you have all of your papers in order. Make sure everything signed. I know they do this to protect the hospital and the patient so I follow formalities. The Doctor’s order tests and work on figuring out the sources of the symptoms. The nurses try their hardest to follow every procedure and always hoping for the best outcome, knowing that sometimes it is going to hurt the patient or maybe scare them. They have to put up with the personalities of the patients, families, doctors , techs,  and other personal , it is so much to do with each patient having constant needs and they get it done, and they show compassion almost all the time. My daughter knows the housekeeping staff, the dietary staff the lady who sits in the front desk information,She is buddies with child-life, she knows the people in admissions and the transporter people and they all do their jobs with the intention of making that hospital a place people can feel confident to trust them when they are already vulnerable.

I am truly thankful for these people I just spoke about but I am also thankful for the experience. I have learned about compassion and empathy and how they interact and are not the same. I have learned strength and vulnerability and I have learned just how far a little information can comfort a racing mind.

I will continue to share bits and pieces of my daughter’s journeys and of other things I decide to write about and I hope somehow sharing her ups and downs along this thing called life, that somehow it will make it a little better to go through. Perhaps her strength will be someone else’s rope when they are falling down and need help back up.

 

 

BK Virus and Kidney Transplants

My daughter received a kidney transplant in 12/2015. She is now 12 years old and she was on dialysis for 8 years prior to receiving her transplant. She has other health issues, besides her kidney disease and it was a combination of reasons that she needed to wait that many years for a transplant. We knew going into it that Kidney Transplant is another treatment option. One of our dialysis nurses constantly reminded us of that. I did not completely understand why until now. She  wanted us to be prepared that although some things will get better others may not. She also saw other patients go through different battles and all of them did not have the best outcomes. Being a medical professional is not simply having the job of hooking someone to a machine, or taking blood or performing a surgery. It is so much more, it is learning to help people understand it all, help people accept it and so many other comforting things that just go along with most compassionate people. I have watched a nurse love my daughter back to health.

My daughter had a failed transplant when she was 5 she was one year on dialysis and all the signs showed it was a great time for her to receive a transplant. We all tested to see if any of our family members could be a live donor. This was not the case and she went on the National Donor List. She received the kidney, surgery went great, first night went great and then the urine output slowed down. Then she stopped breathing then came intubation and a very long recovery. During that time the kidney failed and she wound up in a medically induced coma to try to heal her. She had surgery they removed the failing kidney and back on dialysis she went. During that time one of her dialysis nurses came daily to give her dialysis and she would read to her, love on her, talk to her and pray for her. She not only did her job but she went miles above it. That was the only time her Dad and I would feel comfortable to go home together, shower and pay a little attention to our other children and family things that needed to be done like laundry every now and again and giving the other kids some kind of stability. Luckily for us our kids are amazing and they took care of cooking and cleaning and going to school and just doing what they would do if we were home. We were fortunate in those ways.

After the failed transplant, her Dad and I told everyone we will go to dialysis as long as needed or forever to not ever see our daughter like that. She was truly suffering and we very easily could have lost her. We did not and we gladly went to dialysis for years. About 5 years later the doctors started talking transplant again. We told them we will make ourselves ready when you believe she is healthy enough. They did testing each year until they decided it was time. They saw it was time right around the time we found out about her Dad’s health failing him, he was diagnosed with terminal Brain Cancer and I was not mentally prepared to watch his life go and then risk a repeat of the first kidney transplant. I told her doctors my concerns and they agreed that I needed to be prepared so that I could continue to be her caregiver and support.

About 1 year after my husband passed on, the doctors approached me again. They said that health wise she is ready for another transplant. Some of the issues with being on dialysis for so long was becoming obvious and moving forward to transplant was what was best. They also told us that since her age, the amount of time she has been on dialysis and the list and the amount of health issues she is having she will go to the top of the list, not first as she was still doing ok with dialysis but the top meaning could get a call same day they activate. We joked and said that won’t happen we are moving in two months, we will get the call five minutes after we get our moving truck. Well we were close, we got the call the night before, it did not work out the kidney was not healthy enough. We went home , went to dialysis in the morning and prepared to move that afternoon. We moved went to sleep and 5 in the morning we got the call again.Transplant went great, Kidney started working right away and we did not experience any issues that we dealt with the first time. This time we saw what successful transplant was all about.

We followed strict lab schedules and medicines. On time without fail everyday. Followed rules, drink tons of water!!! We did and continue to do what our doctors recommend. After the first month they did Viral Studies through blood and urine tests. They found she has the BK Virus, which is the number one reason for loss of a transplanted kidney(graft). At first it was not high in her blood and was just high in her urine. Then it started creeping up in her blood also. They reduced one of her Anti-Rejection meds, Then eventually they took her off of it. Then she started having dark and bloody urine. She spent about a week in the hospital and she wound up having angioplasty and a stent placement in her Ureter.

On this past Friday she went in for Labs. I was waiting all afternoon to hear about her lab work, of course  hoping for the best. I did not hear so I said that is probably good news, but I left a message anyway. On Monday I waited to see if they would call but they did not. Now I  said one of two things, they are totally slammed with kids that need more attention right now or they are deciding what direction they want to go with something. Yesterday I got a call from the transplant coordinator, I missed the call but her message was that she was still trying to get some information from the doctors and that she would call me in the morning. This morning came and I got a call from her Doctor. The BK is higher in her blood. Even though they took her off the one anti rejection and reduced the other and had strong antibiotics it did not boost her own immune system enough to reduce this viral load. So now tomorrow we will go to the hospital in the morning for labs, iv fluids and a medicine that will hopefully attack the virus and then more iv fluids. This medicine is pretty much a last resort at fighting this virus. This medication is also toxic to the new kidney. We will of course keep positive and hope that somehow she beats the odds, knocks out the virus and keeps the kidney. But reality has already set it that that might be the case and she can very well lose the kidney. I would love to hide in my room and cry right now but that will just scare her and right now she totally understands it that one way or another we will fight it with everything we have but we are not guaranteed a win.

On a good side though, she was approached by an organization called a second wish, my daugher was approached by Make a Wish when she was very little. She was granted a wish when she was 3. We went to Give kids the world and it was amazing, Sadly she was way to young and does not remember a thing. We have pictures and I try to show her and spark a memory but that does not happen. Well we met with the founder of this organization and she was amazing. My daughter wished to go to New York, She wants to shop, and go to shows and or museums and parks and she wants to meet her Big sister from her Dad that she has never actually met in person. We have this crazy relationship on the phone, computer and text but situations have not allowed us to be together in person. This wonderful lady is putting together this trip that surely will be a highlight of her childhood. So with all the good comes bad and with all the bad comes good.

I am hoping tomorrow goes smoothly and that this medicine does not make her feel like crap. Doc said it should not, hoping it all goes ok and that her kidney finds a happy balance. But no matter what the outcome she will have me and her brother and sister and other family members that adore her and will do whatever to make her at peace with whatever her body does.

Kidney Transplant is simply a treatment option

When it comes to talking about my daughter’s health, the words come easily. She is complicated at best and if you read my other posts you can learn a lot about her. She is now 12 years old and just about 7 months post Kidney Transplant. Everyone just assumes that since she got a kidney everything is better. She is no longer in need of dialysis treatments but she is certainly not out of danger. Her health has improved but she is far from healthy.

The first few weeks labs were required twice a week and have now dwindled down to every 2-3 weeks. During one of her very first set of labs we found out that she has a virus called the BK virus. Apparently this particular virus can lay dormant or can creep up and attack the kidney. It has been the most likely cause of a transplant patient losing the kidney. Rejection of course is another huge concern as it can happen at any time. For this virus to become a troublemaker it must be in the blood and urine. For a while it was just in her urine and they went to half dose of one of her anti-rejection medicines. Going down on the medicine allows for her own immune system to pick up and hopefully knock down the virus. This was working for a while. It has now come to our attention that it is back in the blood and urine so they had to stop that anti-rejection medicine all together. She is still on one so hopefully her body won’t start to attack her new(and very loved) kidney.

This past Saturday morning she woke up and said her urine smelled terrible and that it was a bit cloudy. As she has a Urostomy it is very easy for me to monitor color, clarity and volume. I told her to drink more water and see what happens. We were fortunate enough to get tickets to see a Major League baseball game and the seats were what they call Field box as they were right on the field in front of First base. My daughter really wanted to go to the game as we already made plans with my sister and my nephew(from either side of the family) I told her to keep drinking and since it was an inside ballpark being overheated was not an issue, we decided to see how the day went and call the doctor when we got home , if need be. When we got home she said Mom I did not want to complain but I am having some pain and my urine looks a little pink. We decided that we would empty it, change her ostomy bag make sure that there was not a little cut or something that would easily explain this pink color. Everything looked really good so we called the on call doctor. He stated to take extra fluids and re-evaluate in the morning. In the morning there was more blood and it was obvious sometime was not right. I called doctor again and he again told me to keep her hydrated and to call him if a fever developed. I really did not like the answer but I figured she was to see her doctor the two days later.

Without fever and the blood coming and going it did appear it was not an infection. We toughed it out until yesterday when we saw her doctor and she did full lab work and urine tests. She confirmed no infection but of course sent off for cultures which sometimes take days to grow. She is concerned but so far has not told us the next course of action. This morning there was blood again and now she fell asleep complaining of pain. She is not running a fever so I will wait until the morning but tomorrow for sure I will bring her in as they need to do an ultrasound of that kidney. I have tried to learn what could be causing this but truly I need to stop confronting Dr. Google.

A transplant is a great treatment option as quality of life can surely be improved, not being held down to diet and fluid restriction, not being tied down to a machine 3 times a week and all the other things that go along with being on dialysis. But, the truth is a transplant can be just as scary. Each and every day that she thrives is a true blessing and the days that don’t go so well are just reminders of how delicate life can be.

Am I becoming paranoid????

Next week will be 4 months since my daughter got her Kidney transplant. She was on HemoDialysis for about 8 years before receiving her new kidney. I try not to be such a worry wort, but I can’t help myself. I spend a good part of my life trying my best to take care of this precious little girl. She comes with great blessing. She is what some would call “A Hoot”. You are never quite sure what will come out of her mouth, and likely it will be a reference to one of the many shows tv series she enjoys, or something random she has picked up along the way.

Ever since she was a baby, as a family we had to learn to adjust and we had to learn to accept. We have always know that her future is uncertain. We pretend like we don’t know and we live as though somehow everything will work out. I get a lot of real support from my family and some friends I have made around the hospital between the staff and the families we bond in a way that is hard to describe. We can peep our head into a room for a quick hi and how things are going to spending hours on end with one another. I have mentioned before in other things I have written how much our hospital family means to us.

So now that the little one is almost 4 months post transplant, I have had the opportunity to observe a few things. I see that nothing about “After” is guaranteed. I have learned that there will be ups and downs and there will be lab errors. I have learned that just because your transplant book says you should look for these things, means those things are as dangerous as they sound and make you think. We have had a few scares so far. A few weeks post transplant she came down with a virus I am sure some type of common cold or bug. We were very scared but she came through with flying colors. Then there was and still is the Virus that seems to have colonized in her system. This may or may not become a problem but her Nephrologist feels that even though it could happen it does not usually present itself so quickly. She got a terrible set of labs, that turned out to be a lab error and she had a visit to the ER for stomach pains, and she is now admitted to the hospital until tomorrow morning with some strange symptoms that have presented nothing. Her lab work looks great and her Urine is not showing signs of issue other than its output which is poor and she is sluggish. If you read the transplant book it will tell you that these are two signs of rejection as well as her Blood Pressure was very high but came down with her medication. Ultrasound shows a great Kidney so we don’t really know what the sluggish urine output is other than possibly we have been doing a lot more walking and it is hotter outside now so maybe she is losing fluid through sweat which is something we never could have recognized before when she was on dialysis.

I feel like every time her temp is 99 and not 98 something is not right, I feel like each time she complains of a pain(which is multiple times a day) something has come apart to her delicately put together insides. I try to slow down my brain and say these are natural worries, it is new and she had a 7 hour surgery including a new organ, a Urostomy and a stint that jumped out! as I say, just a couple of days after surgery. (In the hands of the wound care nurse so that  part was not my paranoid I screwed up, it was the paranoid oh no what is going to happen, answer is nothing ) I have never been a paranoid person. As a matter of fact I kind of go through life oblivious to things. Not that I don’t know, not that I can’t and don’t find out the really important stuff, I just don’t pay mind to it. I have always been the person to find humor to get myself through it all. I did it last night while me, my daughter and my friend who was having her own hospital sleepover with her little boy. They had been there for many days and since, my daughter got admitted around 11 he was sleeping and she could sit with us while we waited for the dreaded labs. I have never done this with anyone other than my sisters, or my children and of course my husband when he was alive, losing him has proved to be difficult and in the hospital situations I really realized just how much I miss him. It was so cool to be having a slumber party late at night and our kids were there but ok. Having a Mom who goes through the exact same worries just with their own personal situations, truly was awesome. She would tell us stories and we would tell her stories and I am sure that the bond between my daughter and my friend has been cemented.

I don’t know if every single time she does not follow the exact path I expect(medically) I will get nervous. I don’t know if we will become the hospital pain in the ass family that comes in just to visit and hang out .But this time,  what happened was she was nervous. She woke up and said Mommy I feel swollen like when I was on dialysis, she had a headache on and off and she had low blood pressure in the morning and sky high at night, this all sounded like stuff that happened when she had no functioning kidney. So I don’t know if I just love her so much and want to make sure that I am doing the best I can to take care of her. I don’t know if I am becoming a paranoid mess….

Cancer! You Suck!

Again, I have to accept the fact the cancer has reared it’s ugly head to someone else I love dearly. This person is probably the person I love the most in the entire world, My Dad. I have so much love for my other family members, but my Dad has always been the one to I wanted to hang out with.

When I was a child I was the youngest. I was the one that was different. I lived among a family who believed very much that love is something you don’t need to talk about. Showy love is for some but not everyone. I was told by my Mom, Lisa do you have a roof over your head, clothes on your back, food in your house, is it cold in here? Is there any time you have gone with out by necessity? I would of course say no. She would then tell me that is love. Why in the world we would work hard to make sure you are all ok, do things we think will teach you about life, culture and a little of everything in between. That is love. Love is not something you can describe in a word. Love is a action. It is something that you do always when you really love. So I did know and understand but I still wanted to be told and I still wanted to be the huggy kissy one, as my sisters would say. I would kiss the relatives and hug them when they would come and go. Typically they probably thought I was annoying. I guess I was.

My Uncle , he never cared though he would say get off me you little monkey and pat me on the head. When I got older I realized that I was the one who liked to do these things. They did not so what. Why should I stop being me because someone else is them. I never did and still do not. Now that I am older I realize that love for family is not something that you have to do. It is something that should simply come naturally. If it does not come naturally then it should not be. I have relatives that I don’t really think give a crap about any of my family, only their extensions of it. That is ok. I used to be offended now I could care less. I wish them the best and I am sure that if we found ourselves together we would enjoy one another’s company. Life just gets in the way, likely it is not personal.

I mention my family ties and a little about me for a couple of reasons. One I am easily distracted. I can go from one topic to another, well almost accidentally. Other reasons are ,I want it to be known that I feel, and always felt that I have a small family. My Mother’s side was small to me. Many of my Aunt’s passed a away before I ever got to know them. Cancer. These ladies were my mother’s cousins but they grew up in the same household so they were sister’s, sort of. The older relatives, grandparents and their siblings passed over the years. I will admit I am fortunate in saying three of my four grandparents lived to pretty old ages. By standard at least. Grandparents on Dad’s side- Cancer. Not really sure was my grandfather on my Mom’s side. He passed before me and my sisters were born and I am not really sure from what. He was sick and for a long time and he likely had -Cancer but I really don’t know. My Mom always said he was really sick. I don’t know. The only grandparent who did not die of cancer was my Mom’s Mom. She lived to the ripe old age of 93. She did have Alzheimer’s and  she did suffer a few strokes and the effects of that, but she was not a cancer victim. My Dad is like the main important person in our family. For me, for my sisters, for our kids.  My husband also another victim of cancer used to say, I met you Lisa so your Dad could be my Dad. He is the greatest guy ever. He would say I make my self a better person because I see how much a better person gets loved by his family. He thought he was great, because he is and that is the other reasons I wanted to mention a little of our back story.

My Mom passed 15 years ago, she had heart disease. It could easily be argued that her smoking habit caused this heart disease. I believe she would agree to that statement. I know she was being checked on for cancer but the heart disease became the precedence.

I have seen cancer and the outcomes of it many many times. Seems to me this damn disease has no boundaries. I have seen skin cancer on at least 5 people I know. My Dad included, my sister included. My husbands sister and a few other people I have known. I have seen stomach and lung cancer, I have seen brain cancer I have seen lung cancer spread to brain cancer and breast cancer and well I could just go on and on. Now my own father, my top dog, my superhero dad who always knows the answer and always as a joke to go with your issues, now has this threat hanging over his head. I will add my Dad is approaching 80. He is about to get a pacemaker but his actual heart muscle’s are quite strong, says a very trusted cardiology group so I will believe that the pacemaker, will help him to feel better. But prostate cancer. Docs are saying in beginning and very very good chance as long as it has not spread. Now the days will feel very long until he has those tests and awaits those answers.

It has been only one years since my husband’ s passing, but it has been going on my entire life. I am always grieving the loss of someone. Just recently it has been the loss of the ones I have been closer too. It seems that my little family only gets littler. I wish there was a way for me to be the hero. I could find a way to save my Dad from any ill affects of this disease. I truly believed my husband, could fight brain cancer. I believed he was this guy who could fight his way out of anything, and win. He could win an argument that he is wrong, He can win a fight with a guy, who is bigger and stronger and well he is just Ray. Glioblastoma,  a stage 4 brain cancer is a monster of all monsters. It has tentacle like appendages that grow into the brain, not out like a typical tumor. This disease was found far to late. From every bit of research I did I could not find a way to save him of this horrible disease. If there was a way me and my oldest daughter would have found it . We believed in knowledge is power and we tried. We are naive, obviously but truth is we just loved him. Now I find myself reading everything I can about a disease I know very little about. During all my research it was specific to the disease he had or my daughters medical conditions, as she is special needs. Now I have to learn about this one. I realize that this is different. This has several different treatment options. My sister was with my Dad at this appointment and she said the doctors are very hopeful. They were urology not oncology so again we wait. I have played this waiting game before and I don’t like it. I have no choice though.

My poor Dad, He had to live life after losing his wife. She died right when they were supposed to start really having fun. They raised their family. They had grand kids. Retirement was heading in the right directions and then Bang, No more wife. Enter the widower’s club. A crappy place to be but like anything else , you learn to live again. My Dad was pretty fortunate in that area. He is handsome, friendly, funny and can fend for himself. As a matter of fact my father does not want to be catered to does not expect it and would probably be put off by it.I am glad he lived. He traveled some places my mother was not interested in, that he was. He spent time learning how to be a single guy and I think he did a great job. I continued to be Dad, Grandpa, and brother to his remaining close family and he is an Uncle to many who are well, not so close. He is also a friend. My Dad, has more friends than I could count and I am always so sad for him when he tells me that one is no more. The older you get the more often you will experience that type of loss as death is the only outcome for life. I am pretty sure my Dad has more life to live. His doctors have not led him to believe otherwise. I do not believe any medical professional gives false hope. I believe they base your prognosis on the facts presented to them.

I am kind of overwhelmed by this information though. I think wow why does Cancer just keep on affecting people. My people. I know I am not the only one. I sound selfish, but truly I am not. I am just sad by the fact that my has to feel pain. He has to endure treatments. He has to put up with peoples personalities and after experiencing the amazing radiation tech’s my husband had to the horrible infusion techs he had I know it will be only wishful thinking to expect something totally different, although I will hope for it anyway.

Damn Cancer- You suck Go away already!!!!

Steroid Psychosis- a personal experience

There are some things in life we don’t ever believe we would have to experience. Not only do we not believe we would experience them, but we don’t even focus on the the fact that these things could happen. Why would we? I don’t know but I did experience this and there are many times that I believe me and my children we traumatized by this entire experience.

My husband, was a really great guy. Sure he had his issues, and maybe even a little more than the next guy but he did not deserve to leave this earth the way he did. Well in his opinion he did. He always said,”I have done a lot of bad things and I will die a miserable death from some horrible disease.” I would get angry and tell him shut up, you are being dramatic. Well he must have had great instincts, in fact he did but who would think that great. In November 2013 he was diagnosed with stage 4 brain cancer(glioblastoma). This is the most deadly and aggressive brain cancers a person can get. Sadly by the time we found out treatment was only a way to delay the inevitable. He did fight with everything a person could fight with. He did have his ups and downs and he did pass on knowing just how much his wife and kids loved him and a few other people as well.

When I took him to the emergency room, the staff(front desk) thought he was over reacting. They saw him going in and out of the front doors. He kept sneaking cigarettes(he had quit for a very long time but some how right before we knew he was sick he started again) He was on the phone and talking and joking and being himself. However, I knew that he was very sick. I knew the crap he was talking was not really making sense. I knew that the time frames he would be referring to were not current and he was not seeing correctly. He was walking into things and other signs only someone who knew him would notice.

When he finally saw a nurse they saw his heart beat was extremely low. This concerned them. I told them he is very sick. Terrible headaches and he is confused and so on. They agreed to do an MRI. I guess they saw something when assessing him that they agreed something was going on. Once they did the MRI, the doctor came in and said we have an ambulance on the way, you are being transferred to another hospital. Your brain is very swollen and we see a lot of blood. We don’t even know how you are walking and talking. At that moment he passed out and I had to soak in the information and try to comfort him. I made the pertinent phone calls and went to pick my son from school and bring him to my daughters who were both at home. I told them what was going on and went to the other hospital. After a few days we transferred hospitals again only to get the proper diagnosis.

After the brain biopsy a few days later we went home. We had the first appointment with the cancer center. We were told by the oncologist, that with out treatment he has days to weeks to live. He opted for the chemo and radiation. This bought him 9 months and I am very happy he did. Funny that I started this off explaining that we should be traumatized but I have not told you why. The reason for this is I want you to understand the back story a little. We were in love and we had our issues but who does not. Our kids were scared they loved their Dad and I was scared also. We banded together to make this as comfortable for him as possible.

This is the part that gets crazy. At first they started him on a lowish dose of Decadron. This is a very potent steroid. This is the kind of medicine that if not monitored properly will make a person insane and violent. They call this steroid psychosis. The doctors or nurses or anyone else mention this to the patient or the family. For a guy whose brain was shot he was pretty in tact. When he was on the low does I would joke and say here honey I have your cocaine ready. Time for you to run around the house and clean. He did this for weeks. He had fun cleaning it was easy for him to do and kept him busy. After about 3 weeks we noticed he was becoming a little obsessive about it. We also notices that he was easily annoyed. We mentioned to the doctor. We were told this is probably from the brain cancer and we should expect a lot of ups and downs with his personality.

Weeks are passing. His health is up and down as they said they kept increasing the steroids to deal with the increase of the swelling in his brain. After this whole nightmare ended we were told that this is a necessary evil. Well now he was starting to get really hyper. He would want to exercise and smoke cigarettes, he would want to eat every 2 hours and clean and go here and go there. He was literally running me to the ground as in between taking him back and forth to chemo and radiation and all of his extra and I do mean extra curricular activities, I had to take care of my kids, I had to take my daughter to dialysis three times a week and deal with all of her medical issues. I also worked part time and had a torn meniscus(knee) and required surgery. I was at my wits end and he would be more and more hyper. When I say hyper I mean. Lets paint the house(that we rent), Lets re arrange the furniture. Lets go here and there and back again. Lets clean out the garage. Lets go to the casino, Lets go and lets go. I could not go for much longer when he started becoming weird. At first it was my son who had it the worst. He would start talking to him about the bible. He was saying weird things and insisting he saw angels. Then he started forcing my son to pray. I mean pray out loud prayers he does not know, never learned and never needed to learn as I am Jewish and our kids are raised that way. He then started on all of us. He would be very nice to every one and then curse us out. He would call us names that would make the toughest guy in the world blush. He would get angry about nothing and because of the steroids he was strong. Because of the cancer he was starting to go crazy and because of the steroids he was becoming psychotic.

There were days were he would choke us, me the kids, any combination. Calling the cops on him would be quite counter productive. It was not him. He was very sick and dying. He did not need to be abused and sent to jail. One day he was so crazy and mad about nothing I was driving us home from who knows where and doing 50 down a main road. He reached over and turned my car off. He grabbed the key with such force it bent in half. Luckily I am a good driver. Luckily I know how to handle pressure and luckily we did not crash. He would get angry regularly and say he was moving out. He would literally pack everything he believed he owned(meaning well I paid for the tv, I bought that picture, I picked out those pillow) everything. He would say he was moving out and put everything in front of the house. When he was really really mad he would call his family, mother, sister and tell them that we don’t take care of him. That we don’t feed him and we hide his medicine. He would tell him that our oldest daughter was to busy screwing the guys in the neighborhood to help him get dressed and get to the bathroom. He said I was not taking him to his appointments. This of course was far from the truth. We stayed with him every minute day and night and when he ever got to a reasonable amount of steroids again he did realize it. That is the saving grace in the whole thing is that he did not leave this earth angry mean and violent.

This steroid induced rage lasted about 2-1/2 months. We had days that were truly nightmares. We had to listen to him every word he said or he would flip out. He would call family members and lie to them. Sometimes he would decide to fight with them to. They always blamed it on us. They believed we were being bad to him and all the crazy lies they believed. To this day I can’t stand them for sitting home living their lives while he literally went crazy abusing us and then they have the nerve to think we did something wrong. My mother in law to this day exactly one year past his death has not seen my children, asked how they. 90 percent of his family is out of our lives now. Sad, but good they are pretty worthless anyway.

My family did not know what we were going through. I never believed they would understand. I would lie and say he was not feeling well so no one would visit. I just did not want them to see the holes in the walls and the broken things from his fits of rage. I can look back on it and laugh as I have a gift of sense of humor. I am blessed with the ability to say it was not him. He loved me, he loved us this was the drugs talking. When we finally could not take him anymore I had to do something drastic. I felt that he was going to really harm us more than what we already were and I did not want to see it turn into a tragedy. I gave him Tylenol and told him it was his medicine. I knew that once the steriods started wearing down he would crash. He would fall asleep and feel like crap. The steroids were keeping him alive, they were also killing him. Finally he woke up feeling down and hurting and sad. He said I think I am dying now and I need to go to the hospital. I played the loving wife and comforted him. Once we got to the hospital they doped him up on the steroids again. They admitted him just because he did not feel well and the stage of his disease. The emergency did not understand that he was going crazy from the steroids. It took several days of him being in the hospital for it to start getting resolved. It took for nurses to hear him screaming at us on the phone when we were down stairs in dialysis with my youngest daughter. He would swear we were out doing something bad. He would be nice in front of the doctors and nurses but be mean to us. Finally after a doctor saw me crying in the hallway to listen to me. I explained what was going on and he knew right away that it was the steroid psychosis. He was not the doctor caring for him. The only way he was able to help was by putting him in a seizure room. This way he was being monitored by camera. This way they could see what was really happening when they were not in the room. They saw him throwing waffles at the kids. They saw him screaming at us and all kind of things. They would come in the room and he would pretend to be nice and that we were playing. He would want us to go along. Of course we did because we did not want more problems but we would tell the nurses when we would go into the hallway for whatever reason. Eventually they figured out they need to get him weaned down to the lowest possible dose. This would take many weeks and we would not see the benefit for several weeks. They have us some medicine that would knock him out if he went crazy at home and sent him home. Well he was crazy for about 3 weeks or so. We agreed to take him home only if he would agree in front of the doctors that if he went crazy at home he had to take it. Well too bad that did not happen he would throw the pills across the house and call a cab to take him somewhere. He would have no money and I would have to send the cab driver away. This was a very very low point in our lives. The kids and I were really starting to be afraid of him. We were tired. We were annoyed and we were scared we would never see him as himself again.

Finally he got to a reasonable dose. He was awake and functioning but not psychotic. This was better. He did not remember anything from that time. He did not remember painting, He kind of remember making the  holes in the walls. He did not remember the name calling and choking and punching and everything else. He did not remember cursing out his mother. This all came back on me eventually. When he started getting normal again. He would call them. They would say are they still treating you bad. That wife and daughter and all this nastiness. He would lie to me and say they did not say it but I would be sitting right next to him and hear the conversation. He felt terrible and spent many many nights apologizing for hurting us. It took the kids a while to get close with him again. They always loved him and that is what allowed us to look past the horribleness of it all.

As the time passed his health continued to fail. We did everything possible to fight it. I loved him with all my heart and while he was going through that terrible time, I kept it to myself. I did not share with anyone except one time his sister because he called and forced her to come get him. That was one of his big moving out days. I told her he was going crazy. She took it like really, but not serious.

He was admitted to the hospital several times during the next few months. Each time he came home a little weaker, a little more tired and a little nicer. He eventually got so nice that it was nicer than I ever knew him. This made it so much harder to lose him. I would try so hard to boost him up. Any little thing he did I would tell him he was great and full of will. He eventually lost his left side completely. He would still walk. He would use his right side to his full advantage until this no longer was possible. He did fight this horrible disease with as much fight as you could ask for. He kept positive. He would make this videos and looking back on them I cry my eyes out. He would sit at the table for hours drawing and it would usually be something saying that he loved me or one of the kids names or something that was easy for him. He really did amazing considering our first visit to oncology told us days to weeks to live. He managed to get past the horrible couple of months and make the next and last 7 a whole lot better. Even when he would lay in the bed for weeks on end and barely get up to eat or use the bathroom, he would yell out Babe- I love you. He would do roll call with the kids and tell them how much he loved them no less than 20 times a day. No one could know just how much he needed to say it and we needed to hear it. I still see his face all swollen, with his eyes shut and him yelling to my oldest daughter, he would yell hey G come here. She would be right next time him watching tv or reading and he would say you know I love you. We spent months sitting quietly while he rested. The kids, the dogs and I would just sit there. We did not know what to say or do. We would just talk to him when he was awake. The good thing is that with each down came an up for a while. He would have up days or nights where we would actually have fun. We would watch movies. We would make videos play cards and one night we even sat and had a few drinks(this is rare for us ever and I mean ever) We would take those good times and cherish them. My oldest daughter and I spend months researching this disease, If there was a way to cure him of it we would have found it for sure.

I would hope that no one ever has to experience this disease, or any like it. I know that cancer is a monster that just keeps on. I would hope if you had the time to read this and the misfortune of knowing someone that must take these high dosed steroids to see the signs before they experience what we experienced.

I hope my kids really can move past all the bad and just remember the good. I know that is not really possible as I know I can’t. But like I said before I am quick to make a joke to help ease the pain.

I will always and forever miss him. In 9 days it will be the one year anniversary of his death. I don’t really think this is the kind of anniversary we dreamed of. Hoping he is resting in peace….until we meet again.