Cancer Part 4 - Chemotherapy and the Scary Day

After my surgery in February 1999, they determined that the chemo had basically done nothing. I had undergone months of hell and the chemo had killed less than 20% of the tumor. In terms of fighting cancer, anything less than 90% is deemed to have been ineffective. Needless to say we were discouraged at best. I will get into my surgeries in another post as well, but after I recovered from that surgery, the chemo started all over again.

They changed up my drugs this time. My next round of chemo started on Tuesday March 2nd and this time it would be 4-5 days in the hospital straight, no return trip home in between. The new meds were adriamycin, as before, along with ifosfamide and methotrexate.

I was always getting high doses of the chemo drugs, but that was about to get ratcheted up. The adriamycin would be administered as a drip (instead of a push as before) over a couple of days, then a full day IV drip of ifosfamide. The last would be methotrexate. The amount of that drug would be 10 times the lethal dose for someone of my size. I would therefore be given an antidote along with the drug to keep it from destroying my digestive tract along with the tumor.

I was only able to undergo 2 treatments with methotrexate. My body did not metabolize it. I spent about 6 days in the hospital taking the antidote with blood analysis for the level of the drug in my system every 6 hours or so. They poked my arm so much it developed scar material inside and they had to start poking me somewhere else.

On April 13, 1999 they told us they were discontinuing the methotrexate. It was causing damage to my kidneys. Not long after, they discontinued the adriamycin as well. It was causing heart damage.

The most ironic thing is that twice I nearly died, and both times were caused by the chemo, not the cancer. Once was at Christmas time in 1998. The other was the summer of 1999.

On Thursday, June 10th, 1999 Glynna wrote the following in her journal:

Chad nearly died Monday night. Chad had been in intensive care (ICU) all week due to his low blood pressure (49/16) and difficulty breathing. He is improving, but recovery is slow.

I almost died on Monday, June 7th. Over the weekend I had been experiencing a lot of pain in my chest and difficulty breathing. Saturday night I started coughing up blood and I had a fever. We called my doctor and he told me to take something for the fever and get some rest and see how I felt Monday. Sunday I was very lethargic, and early Monday morning I woke up because every breath was a new experience in pain.

Glynna called my doctor and he told us to get to the hospital. Of course, knowing now how close to death I was, we know we should have called 911, but at the time I had been through so much that we thought it was just another thing. Glynna called my dad to come take me to the hospital so she could stay with the kids and we tried to get me out to the living room.

I could not stand up without passing out. I crawled, with Glynna pulling on me, into the living room. I was sitting on the couch, nearly unconscious when my dad arrived. Glynna and my dad tried to carry me to the car, but I ended up crawling the last few feet. I could not stand up. At the ER, they brought out a gurney and a couple of guys helped me get onto it.

I do not remember much from that morning.

I remember someone holding me up against an x-ray machine because I could not sit up enough for them to x-ray my chest since I passed out so easily. I remember about 6 or 8 people rushing around in the ER room, putting in IVs into the back of my hand (OUCH! worst place for an IV), talking to my dad, taking my blood pressure. Before I knew it I was taken up to a room.

It was not long before my doctor arrived and looked me over. He immediately sent me to the ICU. I remmeber vaguely being wheeled into the ICU room, then it all goes blank. For the next 3 days or so.

I understand that night they told Glynna that I would probably not survive the night, that she should go be with me for a bit one last time just in case. I don't remember any of that, and I am glad that I don't. I can't imagine what it would have been like to go home to your 3 small children, trying to figure out how to tell them their daddy died last night. Sorry for the melo-drama, but that is what hits me when I think about what that night must have been like for her.

I had pneumonia, brought on by the destruction of my immune system by the chemo. The chemo had greatly suppressed my bone marrow, which means my body had stopped producing white blood cells, which fight infection. Bone marrow also replenishes your blood supply. Your body replaces your blood supply every few weeks, and your blood cells naturally die off and are replaced in that time period. Since my bone marrow was basically dormant due to the effects of the chemo, it could not replace the missing red blood cells. Also, I was partially dehydrated, so that meant my blood fluid level (plasma) was very low. They doubted I could fight off the infection, and even with transfusions they thought I would not be able to last long enough for my body to start to support itself. Luckily, this was one of the miracles we witnessed as part of my battle with cancer.

As of June 12th my blood pressure had improved to 98/42. If you don't already know, normal blood pressure is usually somewhere around 120/70 give or take. 49/16 is barely readable on blood pressure instruments.

I would spend 9 days in the hospital. At the end, I was begging them to let me go home. Being in the hospital is bad, not because you are sick, but because it is BORING. More boring than you can imagine. Math class boring. Long lines at the DMV boring. Only worse. You can only watch so much TV and read so much and play so many mindless games (I must admit however that a little hand-held monopoly game really saved my sanity quite a bit during that year), until you are ready to pop.

My monopoly game.

After that my chemo was done. They had given me, literally, MORE than what should have been my lifetime limit for more than one chemo drug. The adriamycin in fact they continued past the point of my lifetime limit, giving me a dose, then giving me an EKG to ensure my heart was not yet damaged, then another dose of chemo. This continued until the EKG showed damage to my heart, then they stopped. The methotrexate I could never use again as my body could not handle it and it damaged my kidneys. I was done with chemo, probably forever since there were several drugs I could never have again. Hopefully, I will never need them.

I went in for some follow-up scans to see what if anything was left of the tumor. Standard scans like MRI and CAT scans showed nothing, but they did a couple of other scans to look for the tumor in ways the CAT and MRI scans cannot.

Both of the other scans are part of what they call nuclear scans. That is, they inject you with a radioactive isotope that then attaches itself to the tumor, and then they scan to see where the isotope collected. If there is tumor remaining it will give them a "hot spot" on the scan.

First, I underwent a PET scan. That is a postitron emission tomography scan. Here is a picture of a PET scanner.


A pet scan is done by injecting a radioactive glucose solution (glucose molecules attached to a radioactive isotope) into a vein. You then lay quietly for an hour. Then they put you in the machine. The idea is that your organs use glucose at different rates. By lying very still you allow the glucose to be absorbed by the organs that use it the most at rest. This includes your brain, heart, and liver...as well as cancerous tumors. Since tumors are typically growing at a rate faster than any other organs in your body, they will use more of the glucose. You are then scanned by a device that can "see" the radioactive isotope that was attached to the glucose, which can then give you a picture of the active parts of your body, which includes tumor material.

The results of the PET scan were negative, there was negligible tumor material remaining. It was about what they thought it would be. The tumor was not completely eradicated, but what remained was less than they thought would be there.

This was followed up by a bone scan, which is similar to a PET scan, but uses an isotope that is designed to attach itself to bone material, so they can see if any of my tumor picked up the isotope, since what I had was a bone cancer tumor. This was mostly to look for metastasis, or migration of the cancer to other parts of the body. This also came back negative.

So far, so good.

Since the scans came out ok, the next step was what to do with the remaining tumor. It was decided to send me to Loma Linda University for Proton Therapy, and that will be the subject of a future post.

Next posts: Surgeries and Proton Therapy.

Cancer Part 3 - Chemotherapy

In the early fall of 1998 we were sent to Dr. Alton Wagnon. He would be my primary oncologist through this entire mess. This is when reality set in. In our 2nd or 3rd meeting, Dr. Wagnon had researched my cancer enough to lay out a plan of attack...and let us know what the odds were. Less than 15%. I had less than a 15% chance to be alive after 5 years.

Osteosarcoma in the trunk, especially in the area of the chest, and encroaching on the spinal cord, is VERY rare. I cannot remember exactly how many cases he said there had been in the literatue he researched, but it was in the low double-digits. Most often osteosarcoma occurred in teens in the long bones (legs, arms, etc.) and resulted in an amputation to remove the disease. In all surgeries involving malignant tumors, the goal is to remove the tumor with a margin.

It was explained to me to think of the tumor as the pit of a peach. In the surgery, they want to remove the entire peach. This makes it much more likely that you will survive as the cancer cells can be migrating in the space around the tumor, and removing that extra tissue means you are keeping the cancer from growing. This is different from metastasis, which is when the cancer moves to entire other body parts (lungs, liver, lymph nodes, etc.) but along the same lines.

Keep the cancer from growing or moving, kill it, and remove it, and maybe you will survive.

In my case removing a margin was impossible. My tumor had grown into my spine and was beginning to encroach upon the dura, or the lining of the spinal cord. So, since you can't live with a good 3 or 4 inch chunk of your spin removed, there was no way to remove the tumor with a margin.

So we had to hope that chemotherapy would do the trick. Heavy chemo and lots of it. I had the good, and bad, fortune of being young, big, healthy, and relatively strong. This meant a heavier load of chemo than most people get. My doctor told me that during his 30 years as an oncologist he had never adminstered these drugs in such heavy doses before. Lucky me, huh?

My first chemo treatment was September 15th, 1998, a Tuesday. We arrived at the hospital early in the morning and they ushered us to a room. The nurses came in with all the admissions paperwork and took my blood pressure. I cannot remember the exact numbers but I can tell you that it was 170-something over 110 or in the 1-teens. That is EXTREMELY high. I never have felt so much anxiety in my life. They gave me a few minutes to calm down to get my blood pressure down and once it dropped below 90 on the low end, they started the IV.

My first regimen of chemo consisted of 2 drugs, adriamycin and cisplatin. Both were IV administered. The cisplatin was given as a drip over a day and a half, and the adriamycin was a "push". They used a huge syringe to put it into the IV and pushed it at a measured rate. The really freaky thing is that adriamycin is bright red. They call it the red devil.

I know it was mostly in my head, but when I say that line of red in the IV enter my arm, I could feel it hit my body. It was a horrid feeling. Like that full-body shudder you get when you think about eating something vile, or see someone throw up, or see a graphic picture, like of an open wound. I could taste it too. It was kind of a faint metalic taste, almost like chewing on aluminum but not that strong, kind of in the back of my throat.

I was in the hospital for 2 days, receiving cisplatin in a slow drip, and a push of adriamycin. They then sent me home overnight, and I went back the next day for a second adriamycin push.

This was the regimen for the next few months. 2-4 days in the hospital, then home for 3 weeks.

Rinse, repeat.

I cannot describe to you what chemo feels like. I am sure it is different for everyone, but for me the best way I can describe it is to imagine the worst flu you have ever had...the body aches, the runny nose, the woozy kinda half-awake half-passing out feeling, the head aches, but especially the body aches...then multiply that by about 1000. Everything hurts.

I could feel my hair, until I lost it anyway. How is that for weird. And it hurt. It was almost impossible to get comfortable, because it hurt to touch your skin...well hurt is not exactly right, it was like it was over-sensitive, like when you have a really strong fever, and it bugs you for anyone to touch your skin. It also made me feel restless, like I had ants crawling on me...not so much itchy as, well, squirmy maybe.

After about 2 days another disquieting sympton set in: my hearing and vision changed. I felt like I was in a tunnel, everything around the periphery of my vision was blurred, my hearing was like I was inside a tin can. Everything sounded muddled, no sharp tones, no highs and lows. Take your speaker system and turn the treble all the way down, and the bass all the way down, and the mid-range all the way up and that is close.

Another change was to my senses of taste and smell, and of course, nausea. The chemo attacks cells that are rapidly dividing, and the cells in your digestive tract (mouth, throat, stomach, intestines) replace themselves more frequently than any other cells in your body, which explains why chemo patients get sick - the chemo is actively attacking your gut, so you throw up. I could no longer taste sweet very well, and sour was muted too...so everything tasted salty and bitter. Ice cream, soda pop, chocolate, pizza, ketchup, everything. Ice cream has more salt in it than you think. I could taste it. And all I could smell after a time seemed to be the chemo itself.

Everything smelled, and tasted...I don't know...wrong. Just wrong.

With that change, and the fact that throwing up had become the norm, it was small wonder that I lost around 75 pounds while on chemo. I gravitated to foods that I expected to fit this profile anyway: salty and/or bitter. Dark chocolate was ok. I ate a lot of chicken soup and other broth-based soups, since they were expected to be salty. Pizza was ok too, but it upset my stomach.

I took anti-nausea pills (anti-emetics) to help with the nausea, but they were only partially effective. One of them was experimental at the time and cost more than $80 per pill. Crazy.

Along with all this come lethargy, weakness, mouth sores, sleeplessness and countless other annoyances, from little to big, that are things you might not think about when you think about someone having chemotherapy. At one point I had to go get my driver's license renewed, and in the photo I look like death warmed over. I could have passed for a 60-year old man who was not in good health.

Another intersting thing was that where they put in the IV in my arm for these first few chemo treatments I experienced calcification of the vein. You could feel it like a stick under my skin and see it as a dark line. The vein closed off and they had to find a new place to give me the chemo. This resulted in my second surgery, to implant a portacath.

It was implanted just under the skin on the upper right side of my chest, and attached to the muscle with a suture. The catheter was threaded around my collar bone and down straight into a vein leading into my heart. They accessed the portacath by jabbing a needly a little thicker than a thumbtack stright through the skin into the center of the portacath. There are lots of fun stories about this as well, that I might get to in another post...like the time the nurse was new to this and hesitated, then glanced the needle off the edge of the cath under my skin and jabbed it into my chest wall instead. FUN!

Here are a couple of pictures of the actual portacath they inserted into me, along with the needle marks from accessing it.

In this one you can see the needle punctures and even a gouge in the metal from when they "missed" when inserting the needle.

The worst part about the chemo was what it did to my psyche. I know that you truly cannot undestand if you have not been there. I felt like I was not really alive, but just kind of "there", and I did not want to be anywhere anymore. The worst thing probably was how my mood changed. Glynna remarks on this in her journal at that time. I felt dark. I was mad at God and ready to give up. The really bad thing is that for the next year, it did not get better. I had my moments, the times in between the chemo when I recovered somewhat, the good days (we were looking at some of the pictures from that time and remembering that good things happened that year too), like Halloween and Christmas. But in lots of ways I did not recover from that dark feeling.

Later my doctors would label it post-traumatic stress disorder, but that is another post.

On September 30th, my hair started falling out. Jordan and Glynna pulled it out in clumps. What was weird, and what you can see in these photos, is that it does not all come out. I learned that is because chemo drugs work by interrupting cellular mitosis, meaning they affect cells as they divide. Your hair follicles divide fairly regularly for your hair to grow. But some of your hair is "dormant" for a period of time, and so the chemo won't work on it. Here are some pictures of that time.





Now, here is the handsome devil we all know and love!

This first regimen of chemo lasted until a few weeks before Christmas, 1998. I had receovered enough to have a nice Christmas. I remember feeling ok, or as ok as I had up to that point. It was as good a time as we had during that year really.

The next trial was about to begin. That will be the topic of my next post, but to give you a sneak preview, I spent about a week in the hospital battling pneumonia caused by the chemo over New Year's.

And I will finish the story about chemo in another post. Sorry for the long read.

Facebook

I, along with the rest of my family, have become a facebook junky. It is great fun and a fantastic way to reconnect with old friends, make new friends, support one another...and PLAY. Well, I have totally neglected my 'blogging' because I have been too busy visiting and farming on facebook. (If you want to know about farming, just check out facebook.com . It is fun, but I hear there are a lot of other really fun games too, such as Vampire Wars and Fashion Wars, to name a few.) Sadly, I could not log on to the facebook site at this time, due to 'maintenance' issues or something like that. The good news is, HERE I AM AGAIN! Yeh!

On the second, I started a post entitled, 'Glynna's Health Log 2009'. I did not finish it and ended up deleting it, since it was old news, so I will give it a shot again. I thought if I am accountable to 'the internet world', maybe I will stick to my goals better. :)I am weighing in every Monday morning at the gym. My goal is 135 pounds. My highest weight was 225 pounds back in the early spring of 2005. My size 20 jeans were too tight for me so I was wearing elastic pants or sweats because I refused to purchase a size 22. I decided it was time to do something about this. I was uncomfortable and depressed all the time. I could not sleep very well because my hips and back hurt so I tossed and turned all night. I started walking with a friend/neighbor of mine in Fernley, NV. By May, I had lost 10 pounds and was down to 215 pounds. I could fit into my size 20 jeans again and I was just elated. I loved exercise again, but food (namely, chocolate and pastries) was a great challenge for me to control. So, I decided to join Weight Watchers. One year later, in June, 2006, I became a lifetime member of Weight Watchers and have been an advocate for the program ever since. Attending meetings faithfully was key for me. I loved the support and the valuable information taught each week, and, of course, I needed the accountability. All of the people who work for Weight Watchers 'have been there and done that' so they are terrific supporters. They totally understand how hard it is to lose weight and keep it off. I even worked for WW for a few months. My ultimate goal is 135 pounds, but I set my Weight Watchers goal at 155 to become a lifetime member faster. I got my weight down to 147 pounds over the summer of 2006, I was a size 10, felt fabulous, and was sleeping through the night without a problem at all.

Anyway, about a year ago, or so, I started putting a little bit of weight back on. I have gained 20 pounds back. I weigh 167 pounds as of yesterday's weigh in. And, I know EXACTLY why. It is because I STOPPED ATTENDING WW MEETINGS EVERY SINGLE WEEK. For the past two weeks I have been back on track. I am exercising regularly and keeping track of what I am eating. I was a little frustrated that I did so well last week and did not lose one pound, but I know from past experience that if I persevere - and I will - that the weight will come off. This time I will not quit at 147 pounds (if my 40 year old body will allow it) and I will reach my real goal of 135 pounds.

Well, that is it for now...I've got to go see if I can get back on Facebook before the Daycare kids wake up from their naps...hee hee.

I hope you are all having a fabulous start to your new year! I certainly am. I know Chad is out of work right now and I only have two full-time daycare kids, but I have really enjoyed having Chad around. He and I are great friends. We really enjoy one another's company...and isn't that just how it should be in a marriage. I am very happy and very grateful. I love you honey!

Cancer Part 2 - Biopsy

(NOTE: As this is the 10 year anniversary of my diagnosis with, and treatment of Osteosarcoma, I thought I would recount my memories of the significant moments in that year. Read part 1 here.)

The date was August 6th 1998, coincidentally, and fortunately, 3 years to the very day that I started to work for Autoliv in Brigham City Utah. Fortuntately because after 3 years of service I was eligible for full short term disability, 80% of my salary, vs. just 40% is I went on disability any earlier. One of many blessings and miracles, if you choose to see it that way, that we experienced through this entire ordeal.

We had been referred to a neurosurgeon to consult on what to do about my tumor, discovered in the MRI I had in July. We were sent to a neurosurgeon because the MRI revealed that the tumor encased the nerve roots at C7, C8, T1, and T2 and partially at C6. By the way, this link gives a pretty darn good approximation of what they did when they fused my spine in February of 1999.

These are designations for vertebrae, particularly in the cervical spine (neck) and the thoracic spine (upper back). C6, C7, and C8 are the lower-most vertebrae in the cervical spine and the very next is T1, the top-most vertebra in the thoracic spine.

The nerves that come out of these vertebrae make up what is called the brachial plexus, a junction of the nerves that come out of the spine at the lower neck and upper back and go into your shoulder and arm. Most all of the nerves that control the arm come through the brachial plexus. My tumor was smack-dab in the middle of the brachial plexus and all of the nerves there went right through the tumor. Since the danger to damage these nerves was very great, a neurosurgeon was necessary to ensure that at little damage as possible was done.

August 6th we went in for the first of what would be several surgeries over the years. The plan was to go in above the colar bone and simply pull the tumor out. It was assumed that the tumor at this point was benign and that would likely mean it was like a balloon and could just be pulled out through a relatively small incision. Here is the scar this and subsequent surgeries left behind (luckily kind of hard to see, but more visible in real life).

I was nervous more than I thought I would be for this surgery. We just did not know what this would all mean to us, and the threat of cancer loomed, even though the doctor was reasonably confident it was not cancerous. Cancerous tumors in this part of the body were just too rare. The odds were against it being cancer. Still, I wondered.

The surgery lasted about 5 hours, pretty short compared to others I have had. In the end, the tumor was not like a balloon, it was more like a mass of peanut butter. It stuck to everything. The doctor did all he could to "debulk" the tumor to at least give me some relief of the pain that started all this off, and he took material for a biopsy. It turns out that "sticky" tumors indicate they are encroaching on surrounding tissue, meaning they are spreading aggressively, which is a prime indicator of cancer.

One interesting side effect of this surgery is that they cut nerves that control some of the autonomous functions on the left side of my head. My left eye droops just a little now, and I don't sweat on the left side of my head. It is literally like a line. When I work out or play basketball or whatever you can actually see a line on my forehead, sweat beads visible on the right side, dry as a bone on the left. This also means I overheat very easily since I do not sweat enough to cool my head down. I guess I have truly become a hot-head through all this!

I also am largely numb across the upper left part of my chest. This started with this surgery and got worse with other surgeries. Also, no hair grows there. Weird. The little things you just don't think about in situations like this. Really adds new meaning to "the devil is in the details".

I recovered just fine from the surgery. One rather funny memory is when I was in the hospital (I was there for about 3 or 4 days I think), and I was on pain meds. They had be hooked up to a machine that would dole out a specific dose of morphine when I pushed a button, then would not give me any more for a certain amount of time, then would give me another dose and so on. My sisters came to visit right after I had pushed that little button and I was somewhat loopy. I had a big grin on my face and they asked me if I was alright. I responded with "Now I know why they call it MORE-phine...cuz you just want more."

You take what laughs you can get, right?

I need to look up the exact date, but it was nearly a month later that we met again with the neurosurgeon. They had sent out the tumor material for testing and the results were grim. Glynna and I both sat in his office after he gave me a once-over to see how I was healing. He then sat down and told us that they tests had come back positive. The tumor was malignant.

Osteosarcoma, he said. Bone cancer.

We were both kind of in shock at that point. What do you say about that? The tears did not really come in force until we got home. I was scared, but I really had no idea how bad it would get. We were then referred to Dr. Alton Wagnon, my first oncologist.

I remember telling my dad. He was supportive and understanding and just awesome about the whole thing. My dad is just that way, one of the best people you could ever hope to know.

The news came as a pretty big shock for my whole family. My paternal grandmother had died of cancer when I was about 7. I could vaguely remember that. My brother-in-law, Art, had died of cancer while I was on my mission, a mere 7 years before, to the very month I received my diagnosis. I could not imagine how hard that was for my sister to relive some of that horrible time through me.

Uncertainty is a terrible feeling, and up to that point I really did not understand the phrase "all we have to fear is fear itself". Our lives changed dramatically on that day, in some ways for the better, and in other ways for the worse.

I turned 28 in 1998. And I graduated from college. My kids were 5, 3, and 1. I had been married for 6 years. And I had cancer.

Happy New Year 2009

Here I sit at one o'clock in the afternoon, barely out of bed, hair a mess, third rice krispy treat in hand, last night's make-up all over my face...(lovely image isn't it?), READY TO START MY NEW YEAR RIGHT...Hey, I did get dressed.

Not only am I blowing that 'fresh new start', but I am admitting it to the world...hang on a sec...I am having a muddy buddy attack...What kind of nut job am I?! Don't answer that.

Ok, ok, I admit it. I am not as witty as my husband or children, but at least I try. Hey! I have done two good things this fine new year! I got dressed and I tried to be witty. Whoo hoo!

We had a great Mormon celebration last night. Instead of waking up with hang-overs, we wake up with puzzle gut (as my mother-in-law calls it). Ya, we like to claim we are not addicts...and then someone shows up with a BIG bowl of muddy buddies...and someone else shows up with a mountain high tray of donuts...then someone else shows up with a lovely package of chocolates just screaming out my name...I mean your name...he he...Before you know it, it is 3am and you wish you could barf...Gee, that sure sounds a little teensy bit like a non-mormon celebration...he he...

Anyway, we did have a great party. I took lots of pictures, as usual, and irritated alot of people, as usual...hee hee. Hey, everyone just has to deal with the fact that I like memories. We had 16 people eating, playing a Wii bowling tournament, chatting, texting, eating some more, laughing, cleaning (Mom), and eating some more, etc. etc....It was great fun.

I told my family I would make crepes for breakfast on New Year's Day...no matter what time of day it was...but the only response I got when I mentioned making more sweet food was "Uuuuuhhgggghhhh". I took that as a "Please! No! Just shoot me before you put more sugar in my body!". Needless to say, we ate eggs instead.

I am officially part of facebook now so any of you out there who want to be my friend are invited...so far I have two friends...Angie and Kelly. I NEED FRIENDS!!! What I really need is to know how to create my own farm...That looked so fun.

Happy New Year 2009! Best wishes and lots of love to you all!