Is This A Miracle . . . ?

After I had my brain washed, literally brain washed. This is where they opened my skull back up and literally rinsed my brain of all infection or almost all of the infection. I was put on a round of intravenous antibiotics for 6 weeks. I didn't seem to have the trouble speaking as did before but my face was really really swollen. I mean really swollen. You couldn't tell who I was by looking at me. At this time, I became very short of breath. Now I am not sure that the surgery caused the shortness of breath but I couldn't hardly catch my breath. When I would stand up, just standing up would wear me out and make me shaky. I just couldn't seem to breathe so the nurses hooked me up on oxygen. Not knowing whether this was normal after two major surgeries or not, I didn't complain. Then again, everyone that I know says that I don't usually complain. I just like to think of it as looking on the bright side of things. I have said it before and I will keep saying it . . . nobody wants to be around a whiny person, so I try my best not to whine. My thinking is that "it is what it is". Now back to the story . . . I was in the hospital for several more days. They finally sent me down to check for blood clots. They found out that my lungs were filled with blood clots. The proper terminology for this condition is a pulmonary embolism. Just one blood clot to the lungs can literally kill a person. I had literally 100's of them, some of them were pretty good sized. So this was what was really wrong with me. I remember thinking, "Lord, Why didn't you take me then," it would have been so easy for Him to do this. I didn't want to lay around and suffer like I have seen so many others do. I soon put this out of my head because He didn't take me and there must be some reason I was left here although I didn't know why. My work wasn't done here. I still don't know why He left me here but the fact is, I am here and I guess He wanted me to write about my experiences more or something of that nature. I remember thinking if I lived through all this that I might just do something about it. Something that could benefit others, you know, tell my story. Well, here I am telling my stories and here you are reading them, so that must be at least a part of God's will. 


Over all these years battling with cancer, it never ceases to amaze me how God works things out. He really does know best. He can take the suffering of others and make lessons of them, lessons we can all learn from. Lessons that we might not believe otherwise. I am thankful that I am here and I am thankful that I can tell you all these stories of my battles. I am just thankful!

You Can't Keep Me Down!!

When they found my tangerine sized tumor resting on my brain, putting pressure on the brain, they wouldn't allow me to go back home. They sent me straight to UVA, no passing go, no collecting $200 dollars. I have to admit, I had no idea just how big the tumor was at this time. My doctors had shared it with Terry, my husband, but not with me, at least I didn't remember it if they did. Don't get me wrong . . the doctors had said that it was a large tumor, large to me was the size of a dime, a nickle at the largest. It wasn't until afterwards they would tell me just how big it was.

My surgery, yes, I said surgery, was set for February 14th, 2012. I carefully talked to the doctors about this procedure. I wanted to make sure that it wouldn't affect who I was and there wasn't going to be any adverse affects in a reasonable percentage of these cases. Then again, my case has always been new and exciting anyway, don't know what I was thinking then. Anyway . . . the tumor was in a part of the brain that would not adversely affect my memories and who I am and that was what I wanted to hear. When I awoke from the surgery my thought patterns were pretty much the same as when I had been put to sleep. There was only one difference . . . I couldn't communicate, I found it hard to speak even the simplest words. I didn't always say what I meant either. I couldn't even write down what I wanted because the surgery had affected my communication skills. There was nothing wrong with me as far as my thought patterns, I just could not communicate them. Thankfully, Terry could see I was still me in my mind, I did have thoughts, I just couldn't get it to the outside and communicate properly. I know it was very confusing to those of you that had contact with me at this point because I didn't fully understand it myself. I mean since I didn't always say what I meant . . . it could get a little confusing if you didn't pay attention. I kept hoping it would get better and over time . . . it did. In the meantime I was reduced to pointing at pictures of what I wanted and stuttering a few words out that could have no meaning what so ever to do with what it was I wanted. I did remain calm, I knew getting frustrated would only make things worse, so I made a concerted effort not to get frustrated. Believe it or not, I was determined to not allow this to get me down. After all, I had been through so much, how could I let this set back affect me. 

As the days and weeks went by, I soon began to say what I meant with more and more accuracy. Still had a stutter but that was probably the least of my worries, after all, I had brain surgery and was making progress so who could ask for more than that? Well, when I went back to  UVA for a check up at one of my other doctors (the radiation doctor), I noticed that my head was leaking from the stitches that had been put in my head. Now, they had replaced a portion of my skull with a titanium mesh. It appeared that there was fluid gathering around the side of my skull, well, you know, what was left of it. I had some radiation treatments that were scheduled and had one of them at this point. The doctors decided to send me over to the neurosurgeon to have the place where the fluid was gathering checked out. Sooooooo, after several hours in the emergency room there at UVA, they admitted me. Now, I had plans of my own. I mean my friend Jennifer had come in from Nebraska (by the way, it was a surprise to see her) and we were going to spend some time together. It was going to be Jennifer, my friend Lisa and my Mom and we were going to sew, sew, sew till our hearts content. I mean think about it . . . the radiation only takes a few minutes and then we would have the rest of the day to play. Now they had gone and messed up my plans. We had packed the van to do some work and now we weren't going to get to do it. I was soooooo disappointed. After they admitted me, they sent in a doctor who would drain the place on my head, then I could go home . . . OK, so we were making progress and our plans weren't totally ruined. OK, OK, I can handle that. So, after we had the area drained, they let us go and be released from the hospital. Boy was I hungry and I knew just where to go . . . The Wood Grill there in Charlottesville.  This was my favorite place to eat. After waiting on the wheel chair guy to take me down for a few minutes, we decided that we didn't need to have him wheel me down, I could leave on my own and the sooner we left, the sooner I could eat that delicious meal that was waiting for me at The Wood Grill. MMmmmm it was good. While we were there I received a phone call. It was the hospital. Seems that they had released me too soon, there was bacteria in the fluid they had drained off. I would need antibiotics. There go my plans again, down the drain. Shoot and Double Shoot. I can't seem to catch a break. So, I go back to the hospital (not before I ate mind you, I mean they did let me go and all). When I arrived back at the hospital, the nurses gave me the antibiotics using an IV. I was hospitalized all week and so the best laid plans for sewing were foiled. I did have a really nice visit with Jennifer, Lisa and Mom, but it just wasn't the same as the visit would have been if we had gotten to sew. I was sent home and had six weeks of IV antibiotics to follow while resting at home. Jennifer had to go back to Nebraska. Thank goodness we got to visit the time that we did. I can't tell you how touched I was with all the people that contacted me during this time. The Lord is truly Good and Merciful. I can not express the many thanks to those that have contacted me during this time. It is just so over whelming. Thank you, Thank you, Thank you, to all of you and you know who you are!!

Still Undefeated!!

Well, I am long over due to post a blog. A lot has transpired since my last blog of over a year ago. I have grown closer to God through it all and am thankful for this opportunity to post another blog. I just wasn't in the mood to talk about the experiences yet, I am ready to do so now.

In January of 2012, my husband, Terry, suggested I go see my family doctor to see about my supposed memory loss. I thought he was really being paranoid and looking for things to be wrong. So, I humored him, and went to the doctor. Now, from my perspective, there was nothing wrong with me. Sure, I was just a tad forgetful, but at my age, who isn't. I had friends that talked about being forgetful, I was no different from them. I told the Doctor Terry was just being paranoid and he was just imagining things. I had been holding down a job in an office and had been doing it quite well, there was certainly nothing wrong with me.

One day Terry showed up at my work and told me that we were going to the emergency room. I looked at him like he was crazy. He had talked to my parents and to my co-workers (one of which is a good friend of mine) and he had talked to my doctor and explained what was going on with me. Well, I thought there was nothing wrong with me, little did I know, there was. I had been holding down a job that was temporary and was soon to be made part time but with benefits. You know, Insurance and all the state holidays off etc. I waited for a month and had just begun my new job . . . I was three days into it when Terry showed up at work. It seems Terry had talked to all these people and they felt like I was not myself. You know, just the little things. Memory loss, not finding or remembering the words that came so effortlessly before, not remembering whole conversations that took place. At first I just thought Terry was just trying to pull one over on my, I would find out later that wasn't so.

We spent hours and hours in the emergency room that day. It seemed like it was taking forever for them to get results of tests, etc. Finally, after 8 hours of waiting in the emergency room, the doctors were ready to talk. Praise God!! What I didn't expect was what was about to happen . . . I had another brain tumor. It too had grown out of the skull inward towards the brain. This one was located in the upper part of my brain where the two lobes come together. It was the size of a tangerine. The doctors wouldn't let me go home, they wouldn't let me even get dressed and they sent me straight to UVA in Charlottesville via ambulance. The EMT guys gave me a sedative and I slept and prayed and I prayed and slept on the almost 3 hour trip. Terry was driving up after gathering some of my clothes at home. I again spent many hours in the Charlottesville emergency room. It was just too hard to believe. I didn't fall apart, after all, I had been here before, I was tired of being here in this place but not at all alarmed . . . at least not yet.

Picture of my Brain Scan

This is just a picture of the tumor. Just to give you an idea of the size. This tumor was just as big on the outside of my skull as it was inside. Thankfully, I went to the doctor to get it checked out and even though it wasn't a small tumor, they could still help me and treat me. I'm good now!

Where did that knot come from?

While taking the blood thinners, we had to adjust the dosage time and time again. During this time, while washing my hair in the shower I felt a bump on the front left part of my head, just inside my hairline. It was probably just a little smaller than a marble. I remember thinking, how strange, it didn’t hurt. Just figured I had hit my head on a cabinet or something else and had forgotten about it. A couple of weeks later, I could just about swear that the bump on my head was larger. The next appointment for my blood tests was to see if it was too thin or not. I mentioned the knot on my head to my family doctor. He took the time to feel it and said it didn’t feel like anything bad and I should just keep an eye on it to make sure I didn’t have any other symptoms, which at the time I had no symptoms at all, just a knot head. My husband had a knot on his head several years earlier and it turned out to be fatty tissue. I just figured it was probably the same type thing.

I go back and forth to the doctor for the blood tests. Blood clots don’t go away very quickly. It’s a good lesson in patience even though I didn’t really want the lesson. Before I knew it, it was time to go back to UVA for my 12 month check up. About two weeks before the appointment, I notice that the knot on my head was getting even larger. At this point I am beginning to get pretty concerned about it because I noticed one night my vision seemed a little off. Things I could see a few weeks before were blurry, not real blurry but enough to notice the difference. I had begun to have slight headaches. It was spring time and for me when everything is in bloom I experience allergy problems and headaches. The headaches didn’t alarm me as much as realizing that the bump was even bigger and my vision seemed to be getting worse in my left eye. I do wear glasses but both eyes have always been the same and now they weren’t. I called my Oncologists Assistant at UVA and asked for her to call me back because I had some questions for her. She called me back pretty quickly and I began to tell her what had been going on with my health and the knot on my head and the vision impairment. I could tell by the tone of her voice and the questions she was asking me that she already had a pretty good idea of what was going on. I just had a feeling. First thought is, No, not again, I just did this last year. We made an appointment for a PET scan the day before I was to see the Doctors in Charlottesville.

Once again, I went to the internet. Now when I tell you that I went to the internet, I am very careful about what websites I get information from. I do some with WEB MD and most of my information comes from the American Cancer Society and other organizations that are reputable and have valid information. Keep in mind though the Big C (Cancer) is never exactly the same in anyone. There can be and are similarities etc. but what treatments work for one person doesn’t always work exactly the same on others. Some will get sick, some will not. Best thing to do is to ask questions and then once you get the answers, ask some more questions. Don’t be afraid to ask questions. Your doctor will most likely be your best place to get information. One of the things that I like about UVA is that they have what they call “Tumor Board”. It is a group of Oncologists from several areas of specialty and resident doctors that have a meeting once a week and they discuss their patients and treatment plans and how all of the above are progressing. The way I look at it, I am getting expertise from each and everyone in that room during that meeting. Keep that in mind.

Went for my PET scan and received the results the next day. My Mom was with me, she has been such a blessing through all of this, and it’s been nice to have her with me through all this. My oncologist came into the room, said, I’m not going to beat around the bush, I am just going to spell it out clearly and then we will talk. He sat down, looked at my Mom then looked me in the eye and said, “your PET scan reports came back positive.” Well, no surprise there for me but my sweet Mom was rejoicing and saying how thankful she was. I knew at that point, Mom thought positive was good. So, I looked at her, she looked confused by the look on my face. I said, no Mom, we wanted the tests to be negative. I still remember the look of disappointment on her face. I felt as though I had let her down, I know I have no control over whether I get cancer or not, just don’t like breaking that kind of news over and over again, even if it is over several years time.

Now for a little bit of good news. Turns out the tumor was in an area of the brain that’s fairly easy to treat. I had taken extra clothes just in case I needed to stay longer, turns out that was a good thing too. My oncologist sent me down to my radiation doctor so they could do a work up and get me set up for treatments. Because it was dealing with the brain, they wanted me to have the treatments at UVA rather than at home. Even better news . . . I received my first treatment that very day. I am all for let’s (as Larry the Cable Guy would say) git er done!

After the Second Set of Treatments . . .

While receiving the radiation for the bone cancer in my sternum area, I was pleasantly surprised as to how quickly the pain began to subside. What once was a horribly sharp and constant pain quickly began to become less painful within about a week and a half. What a wonderful blessing when the treatments began to work so quickly. Bone cancer is extremely painful. It is something that hurts all the time and then when you move it hurts even more.  If you try applying any pressure or weight to the area that is affected, then the pain becomes terribly intense. Even some of the strongest pain medications don’t help all that much. They do make it a little more tolerable. There were times before treatments the pain had gotten so strong I thought I might pass out. This is why I was so surprised and pleased when the pain began to leave so quickly.  I would like to add, these cancer spots on my sternum were found pretty quickly. My doctor even made the statement that I had pretty much diagnosed myself. I didn’t care how it was found, just so thankful that it was and again it was something the doctors and technicians could help with.

Once the all clear was given by my doctors, I began to resume the ole familiar appointments every three months. This is just a standard procedure for cancer patients. It’s one of those precautions that the doctors take to make sure that you are well and that they got everything. There are a lot of people that don’t go to these appointments and that is a very dangerous thing for them to do. It’s just so much better if you go to all the appointments so that if there is anything to pop up they can catch it early and take care of it more quickly. The treatments for cancers that are found early are less severe and also last less time as well. I have found it is so much easier to follow the doctor’s instructions. Think about it, chances are they have been dealing with this dreaded disease for years; they have so many studies at their finger tips with the internet. They even have associates that they can confer with. Who am I to question their wisdom, especially when it makes so much sense to me? I have not attended medical school but usually went to the internet to see some of the other doctor’s opinions and treatments for the same types of cancers that I have had.  So, I went to these appointments for 9 months.

During the following 9 months, I developed a blood clot in one of my arms. It was in the left arm and being left handed made me act on it pretty quickly. I went to my family doctor immediately. I called the nurse and told her what I was experiencing so they let me just stop by really quickly so they could take just a quick peek at the arm. Sure enough, they were pretty sure that it was a blood clot so they sent me on to the hospital emergency room. Now, you ask, why would they send you to the emergency room and it’s pretty simple, I needed an ultrasound on the arm to see how big, bad and deep the clot was in the arm. When you have seen as many doctors and nurses and technicians as I have, you learn pretty quickly how to read peoples expressions and you can tell pretty fast if they find something. I knew after the ultra sound that it wasn’t good news. Did I mention that I am always the one that has really weird stuff? Well, I do, seems almost every stage of this process what I experience is in the 5% range. Turns out I had deep thrombosis of the arm. It’s supposed to be pretty rare. It’s usually something that happens in people’s legs and it can be very dangerous if the blood clot breaks free and travels to your heart, lungs or brain. There are those that would tell you that if mine had gone to my brain, it probably wouldn’t have caused any problems cause I am a little off in the head anyway. I was put on a regimen of blood thinners and put back on weekly visits to the doctor to make sure my blood didn’t get too thin.

Second Set of Treatments . . .

Before we could begin the second set of treatments we needed to know if it was the same type of cancer as before. The doctors told me that they would just put a needle into the bone to get the biopsy. OK, so now I am picturing something like a hammer and chisel. I am so not looking forward to this. I am not the smartest but I’m not stupid either. Those of you that know me . . . no comments from the peanut gallery please. Arrive at UVA for the test, still picturing the hammer and chisel procedure and yes still not looking forward to it. Much to my relief, the doctor explains the procedure and then shows me the gun with a little needle in it that just pops in and out very quickly. Whew, thank God they aren’t as primitive as expected. It was all over very quickly, Praise God Again!

Tattoos are pretty popular right now, but when I was growing up it just wasn’t something you did unless you were in the military or something similar. The technician informed me once again that I would need to be tattooed for the treatments. The tattoos look like a little black mole or something. It’s ironic that I wouldn’t even date someone that had a tattoo when I was young, now I had six.

Thankfully the radiation treatments on my sternum area were done at a hospital close to home. My family doctor had recommended a local Radiation Doctor to administer the treatments the doctors at UVA had decided upon. Treatments began and ended fairly quickly. Sorry, no really funny tales to tell during treatments. The only complication is there were a couple of weeks that my throat was sore, nothing to write home about.

About a month or so after treatments the burns from radiation began to show up (externally). Yes, with radiation it is almost always a delayed reaction but everyone reacts differently. The burns were bad enough to where I couldn’t wear a bra and just wore loose fitting tops in layers. I went to my family doctor’s office to get some burn cream so that the burns would heal faster. So, I am sitting in the room waiting for the doctor to come in to talk to me, he arrives and asks to see my burns, so he could see how bad they were. Did I mention that when you have babies or cancer or any other major illness that you tend to lose your inhibitions? Well, it is so true. Ok, moving on, so the doc asks me to see my radiation burns . . . I simply lifted my shirts up, figured that was the quickest, easiest way. My doctors face turned a little red, I could tell he was surprised (although I don’t know why) and then he laughed a little nervously and looked at the nurse and told her, well, I love my job. We all laughed about it and I did get the burn cream prescription and was on the road to healing in a short time. It’s just another one of those wonderful things to be thankful for.

I returned to UVA for a checkup and tests to see how the treatments had worked. Test results proved that I was in remission once again and so thankful and blessed to be back on the road to recovery. I am still Praising God for His healing whether it is through divine healing or through the technology that God gives to the doctors and researchers. The best things to remember is don’t give up, keep your chin up, and keep your attitude up as best you can. If you have trouble with that then ask a friend or family to come over and find something to laugh about. Laughter is one of the best medicines there is!

Second Diagnosis . . .

I went for check-ups for over four years. I had begun to work again after getting some other health issues under control. I was working in a bakery and decorating cakes, baking all kinds of goodies. I enjoyed it for the most part. I had learned to decorate cakes from my Mom, who was known as the cake lady when I was growing up. She made cakes to earn money so she could be a stay at home Mom. She also taught cake decorating for our local community college for several years.

About three months before I was going for my FIVE year check up, I noticed a place on my chest that was a little sore. The five year check-up is something all cancer patients look forward to because after five years you are considered cancer free and cured. I wasn’t concerned about the soreness, I just figured I had injured myself somehow and just didn’t remember what I had done. As time passed I noticed the spot getting more sore. After about six weeks I had begun to have problems with soreness in my arms and shoulders and noticed that when I would reach for something that it had become rather painful to do so. About two weeks before my five year check up I decided I should call the doctor at UVA and let him know what was going on. At this point it was pretty apparent there was something wrong and I was only two weeks from my “final” appointment. When I made the call I talked with my doctors assistant. She had a whole long list of questions and I answered them. The more questions she asked the more serious I began to think it was. After one-hundred and fifty seven questions (OK it probably wasn’t that many) she told me she would talk to the doctor and call me back.  She called back within a couple of hours. It has been my experience when they call you back right away; it isn’t usually a good thing. I was to have a PET scan when I came in for my five year check-up.

Now I have had lots and lots of tests but had never had a PET scan so I didn’t know what to expect. It’s a lot like a CT scan, they just use a different kind of fluid to “light” everything up. The substance they use is a nuclear medication.  The technician conducting the test did several things to prepare you for the test, none of which were very eventful. They do put an IV in etc. When he came to inject the nuclear medication, you know me, I laugh at weird stuff. He was all dressed up and no place to go. As he came near me, he was wearing a suit of lead complete with protective goggles and protective gloves. He looked like he was going to go deep sea diving all he needed now was an air tank strapped to his back. He was walking very slowly toward me so he wouldn’t “spill” any of the medication in the syringe. I burst out into a laugh. All I could think was he was being so careful not to get any of that substance on himself and he was going to put it in my veins. He injected the liquid into my IV, there was no reaction, and I mean I didn’t feel anything so it was pretty uneventful. You go into the room and they do the scan and then you are done. It’s pretty simple and then you wait for the doctors to get their results. They did put in a catheter, which also wasn’t really any big deal. Your bladder has to be empty - completely empty when they do the scan.

I go to leave the room and one of the technicians notices my bag has leaked just a little (two whole drops, literally). They immediately went into panic mode. I am standing there thinking, let’s overreact now. They started making calls. I go to walk out of the room and they tell me I can’t walk out that way because of those two little itty bitty drops. I’m thinking, how stupid is that? The drops came out of me and now they won’t even let me walk around it? As Charlie Brown would say . . . “Good Grief”. I offered to clean it up and they informed me that only the hazmat team could clean it up. And so they proceeded to call the hazmat team to come “clear” the room. At this point I am laughing out loud again about the huge deal they are making about two little drops of pee. Just didn’t make sense to me, then again, as I have said before, I know I am a little weird. It takes the hazmat team approximately 3 hours to “clear the area.” Talk about overkill.

After the doctors received my results, I was informed that the cancer had spread and I now had bone cancer in my sternum area. There were two spots that would need to be treated with radiation. Praise God it wasn’t as bad as it could have been. And Praise God the treatment only entailed radiation treatments. They even arranged for me to have the treatments close to home. And here we are, another blessing from God.