Journal, continued, posts 5-10
Post # 5 7-9-05
Think I'll do a quick post of pics:
My son and I at my wedding, he was only 10!
DH and I at our wedding, yep he's shorter & skinnier!
This is my son in the local parade this year:
Ok, I think thats enough, hope they aren't too big!
If I can find any pics of us that are recent, I'll post those but I hate my pic taken!!
DH on the way home! Got to get dinner ready!
Post # 6 - 7-9-05
I'm 43 now, got my nursing license at 39, married again at 40. I'd working in nursing homes from the time I was 17, my mom happened to work at one, and all of us kids (my 2 sisters and brothers) all started there when we finished high school. I never thought about going to college, well, I thought about it, but had no money, so I never went. I worked in the nursing home from the time I was 17 (with a short lapse after I turned 18 for 4 months) off and on until I turned 25 or so. My DH was in the navy, we went to Hawaii for 2 years, then I left and came back home to get a job and save money for when he was getting out of the navy in a year and a half, yep, we stayed apart for 1 1/2 years, seeing each other only every 6 months.
When my Dh got out of the navy, we moved to his hometown of Philadelphia, the city of Brotherly love. I got my first dose of it when we were first married and I saw my first street person eating out of a trash can. Yeah, that's a way to scare a 19 year old girl! So, we moved back there, his entire family worked for the school district, they were positive they could get him a job there, and after a 6 month wait, us working part time jobs making peanuts, he got hired. I got a job working customer service, then moved into bookkeeping. I loved it, but when I got an offer to work for AT&T, I jumped at the chance! I loved working there too! We were doing well, trying to figure out why we weren't having a baby, doing infertility stuff, buying our first house, first new car, etc. When we finally decided we had the money and our insurance was going to cover invitro, we found out my DH had cancer. Yep, what a blow!
time to post, gotta finish dinner!
I've been trying to be really good about spending money and paying off bills, etc. We are set to be able to pay off all our old bills within 18 months. So, buying this new boat set me back a month, and it kind of peaved me. But, with the old boat sold, I'm feeling better about things.
I'm really a shop-a-holic, so saving is a hard concept to me. I mean, I need a 12 step program sometimes. I have a fridge magnet that says, "Shopping is cheaper than a psychiatrist". I think thats true in my case. I've always been a shopper, it's...whats the word, hmmm, maybe cathartic for me? Problem is, I never had the money before, now, we make good money, and I can just go and shop, when I want, so it's dangerous sometimes!
Ok, back to my Kahlua, I'll be out (sleeping) soon, with alcohol on board!
Post # 8 - 7-10-05
As DH gets all the stuff ready to sell the boat, I'm sitting here looking through stuff. I think maybe, I'll continue my story. Why do I feel the need for this?? I don't know, I guess it kind of sets up my life somehow, and this journal will be whats going on in the future. At least thats my hope.
So, we found out in August 1989 that my DH had end stage Non-hodgkins lymphoma. Why he got this cancer was unknown. We'd been at a friends over the 4th of July in upstate NY swimming in their pool when we noticed the lump in his groin. We immediately called our family doctor, he was on vacation, so we saw his replacement. The guy didn't want to deal with it, and told my DH to go to a surgeon. I question...why a surgeon, when you don't even know what it is?? So we found a new family doctor. He drew some blood looked at the lump and called us immediately and told us that my DH had cancer. Stage 4 B, end stage. He immediately set us up with an oncologist for more tests. What a great guy, he was so totally honest with us, and open, the best kind of doctor you could want, we continued to see him as a family doctor until I moved back to the West Coast.
So we went to an oncologist, he did tests, suggested chemo's, did a bone marrow biopsy to see how involved that was, my dh hated it, and that doctor. When he went through his 6 rounds of chemo, the doctor told him he was in remission, and he should go down to the U of PA and consult with an doc there about possibly getting a bone marrow transplant. So, we started making the almost daily trip to downtown Philly, actually almost right across the street where I worked! We found the best oncologist in the world, him and his staff were fantastic! But, my dh wasn't in remission and required another 6 rounds of chemo to get him through. He was finally in remission in the end of May, and started his transplant procedure immediately. He had what was known as an autologus (sp?) transplant, they didn't feel he would make it through a donor transplant. So, his own bonemarrow was harvested, cleansed with chemo and radiation, while they did continuous chemo and radiation on my dh and then they re-introduced his own bone marrow back into his system, and we waited. Waited for days for him to grow new cells that were cancer free and for his body to make it through the procedures. It was a rough first few weeks. He had several infections although he was in isolation, he had a severe reaction to an antibiotic that almost killed him. In the midst of all this, my dh was transfused on June 1, and our ds was born on June 10th. I wasn't allowed at the hospital to pick him up until June 13th, so I was going to 2 different hospitals for a few days. I tried to spend as much time as possible with my dh, but he was as excited as I was to see our son. I truly think it's what gave him the extra energy to get through all the tough times.
On June 14th, I brought my ds to the hospital to meet his father, he saw him through the glass window of the sterilized unit he was living on. A week later, I was allowed to bring the baby in, and my dh got to hold him. He got better and better. By June 30th, my dh came home. I have the most adorable video of him changing his sons diaper for the first time ever! He ended up with desitin all over his hands, poop dropping out of the diaper, as I sat there and filmed, instructing him, and giggling my butt off! He got to be a much better diaper changer after that, but that is the most precious video ever!
I was lucky while all this was going on with my dh that I worked for a wonderful boss at AT&T. He had been going through the same thing with his MIL, so he knew what I was going through and let me have a lot of time off, let me work through my lunch to get off early etc. When my son came, there had just been a new contract with the union, and even though I adopted, I was allowed to take leave to be home with my newborn, which was great!
So that summer we played with our new baby as my dh got stronger. In October, I had to go back to work, my dh was still on leave but getting well, and he stayed home with the baby. In December, I found out I was getting laid off because all the jobs were moving south, so unless I wanted to move my family, I was out of a job. Well, that wasn't happening, so my dh felt he was well enough to go back to work, and he did, and I got to stay home with the baby. It was great, I collected UE for 18 months and stayed home with my son, while my dh went back to his full-time job, which he loved.
When my son was 2, I went back to work full-time. We put him in a wonderful daycare where they taught him french, and lots of other great things. That daycare closed when he was 2 1/2 so we put him into another, more expensive daycare, but it was also a learning daycare. This was when we learned that he couldn't sit still with the other kids, etc. His teacher, who I still keep in touch with, had done extensive studying on children with add/adhd and she thought he might be. So, we talked to the docs, had him tested, etc. And he was adhd. We tried numerous other things, taking away sugar, no food dye's etc. He wasn't a big sweet eater at all, so that wasn't hard, the food dyes, he'd not had a lot of that either. But we tried. Finally, when he was 3 1/2 and almost killed himself by running into traffic, we had to put him on something, because he was becoming out of control. It's been a long road with him and his adhd, but he's turned into a great kid who's only able to sit still with his medication. We're lucky in that he hasn't had any other problems healthwise, but I found out later that all his biological brothers and sisters all have adhd. They are all, also living in Foster care in PA, because their mother went on drugs and lost them all! He's the luckiest of the 6 children she brought into this world, living with the only family he's ever known and not being thrown around the system. What a shame for those children.
Anyway, I'd better post and go check on a few things. I guess I'm really a talker/typer!
Post #9 - 7-10-05
My dh worked his butt off at his job, but we still did the fun things like go "down the shore" with all our friends during the summer months. We had tons of friends due to my DH's interest in the "mummers", something usually only Philadelphians know about, but kept us busy all year long! In July/August of 2003, I came home for 3 weeks to see my mom and dad, I got back first week of August. My mom even said my son was hyperactive (he'd not been diagnosed yet!).
After that, things began to go downhill. Although my dh worked, he was getting weaker and weaker. We found out about October that his cancer was back. He worked the entire time, going almost daily to the cancer center getting chemo, transfusions, platelet transfusions, etc. There were several times when (I'm sorry this is gross, but true) his platelets were so low (they are for blood to clot) that he'd just start bleeding from his nose and we couldnt' stop it, we had to emergency him down the the hospital. We only ever called 911 once, in a snow storm, because they'd only take him to the closest hospital, which definitely didn't know how to take care of a cancer patient. By the time I got there, they'd stuffed something up his nose to try and make the bleeding stop, but they had no platelets to give him and he finally had to be transferred down to the Univ by ambulance to get those. It was horrible and he begged me to get him out of that first hospital.
So that winter he continued to get thinner, working full time. He had no choice, he'd used up all his long-term disability with his work. After work he'd head down to the Univ for blood or platelets. We got a huge snow storm about the 5th of January, then it froze over, and we had nothing about 30 degrees for almost a month, so nothing could thaw out. They closed all the schools for 3 weeks, but since he worked maintenance at a Jr High, and the school system was responsible for cleaning sidewalks etc, he had to work. His job consisted of hauling 80 lb bags of rock salt daily and dispersing it on the sidewalks, steps etc. He worked very hard that winter, all the time getting sicker and sicker. About the beginning of March, he got really sick and had to be hospitalized. He stayed there for about 2 weeks. He had some type of reaction to something and he blew up like a puffer fish. He was unrecognizable. The local hosp transferred him once again to the U of Pa. Aparently there was a tumor blocking something, they gave him a week of radiation and it went away, I don't remember every detail though. That was good and things looked up! And he came home and went back to work.
His cousin left that Friday, crying. His parents decided to go back home to DE, 3 hours away, not sure why, but I think it's because they were totally unrealistic about things. They thought he'd get better again and had argued with me about planning a funeral that Friday. They went home. My dh and I were left alone that Friday night, I gave him his medication, we turned the tv on to watch something, he loved tv, and I fell asleep on the couch. My girlfriend had wanted to stay with me, but I sent her home, she had an instinct I guess. So, I fell asleep on the couch, about 1:30am I woke up and just instinctivly knew he was gone. I went over to him, he wasn't breathing. I turned off the oxygen and started to hold him and cry. He was still a bit warm, so he'd not been gone long. I wasn't sure what to do at that point, so I called the hospice nurse, who talked me through things. I then hung up with her, and called my girlfriend. She lived 15 minutes away, and was at my house within about 8 minutes. I was a basket case, but managed to call my IL's in DE. I don't know how, but my DH's cousin, his brother (who he didn't want to see b4 he died, long story there), my brother, who lived within 5 mins away and all his friends. Geez, this is harder than I thought to remember.
