9/1/96
It is finally September, and Brittany starts school in a few days. I now have the task of getting her ready for school, buying her uniforms, filling out all the paperwork, and finding her after-care for when my radiation starts. So far, everything is in place except for the after-care. I am on a multitude of lists, and I just have to believe that something will open up before October.

It has been nine months since my diagnosis, and I must say that it does not feel as gruesomely never-ending feeling as it was at times. That light that one is supposed to see at the end of the tunnel is now looking bright and wide!

9/4/96
I have been reading about radiation lately, and I have found out that the damage it causes is in the tissues it hits on the way to get to the tumor. So I thought that I had better think of a way to protect those tisuues, and I came up with a "Wall of Phunts" visualization where Phunts work as a protective armor around the healthy cells. Of course I will need to feed the Phunts to keep them happy, so I will need to eat the right foods. Those foods are on my list to learn about, and I should have the entire visualization put together and illustrated by the time I am radiated. I will also add to the visualization, a shower of Cloud Blort rain to keep all my tissues and skin highly moisturized. It will be a day at the beach!

9/10/96
I have not had chemo for a month or so, but I had a CT scan and mammogram today (I have an intense family history of breast cancer). I have my bone marrow biopsy on Friday and should find out the results of my restaging then. It makes me nervous to think about it, because I want to hear that I am in remission, but I am almost afraid to not have more chemo for fear that my HD will come raging back. Either way, I get radiation next month, and if I need more chemo it will follow the radiation. My hot flashes are all gone, thanks to the hormones I am now on. I am not supposed to eat salt though, for when I do I plump like an Armour hot dog. I have not been too good about it, but I have learned that when I eat too much salt that I can drink tons of water and it does get flushed out.

My latest hair report - is that I have an inch long semi-stylized do. I travel about town now without a hat, and I feel rather bold doing so! Lots of people comment on my nicely shaped head and small ears, and that is something I may never have known. I truly am an alien!

All in all, I am feeling rather normal, it is an overall feeling that I noticed while I was stretching the other day. You see, I have been riding my bike and doing my "Back to Fitness" body toning exercises for the past few weeks, and my body is responding the way it used to years ago. I cannot quite put my finger on it, but that does not matter, I am just so relieved to be heading toward being myself again. And I promise never to forget what is it like to be weakened by cancer in the isolated world that the disease thrust me into, and I am lucky that I have had the chance to see the world from the depths of near death. I am also fortunate to have had the time to accept that I may die, and actually relax with the thought in such a way that dying would be OK if that is what should happen. It all makes living easier and better, time slows way down in a way that will probably make my life seem longer than it ever could have before. And that is worth millions!

9/14/96
I had my bone marrow biopsy yesterday, Friday the 13th, and did I ever have a rude awakening. I got to the doctor's office all ready to be knocked out for a pain-free procedure, when I found out, lying on the table, that the drug used to knock me out was just outlawed by the state. It seems that the state is not happy with the way some people have abused the right to knock out a patient in the office, so they cut all the non-abusers off from their right too. These law makers need to taste a bone marrow biopsy and then maybe they will change their minds! So the nurse gave me a hefty dose of Demerol which I did not feel at all, so then she gave me some Compazine and another dose of Demerol which felt like doses of water. Perhaps it was my Adrenaline that fought the drugs, but I did not feel sleepy or anything remotely like I was supposedly heavily drugged up. Then, of course, I got some nice painful local injections to numb the entry site, but at that point I was going to flip out over the slightest iota of pressure or pain. I did get through it, and they did get some "beautiful" samples of my bone marrow. I now sport two small gauges on the back of my pelvic bones, and I must say that I am rather proud of myself for not jumping off the table during the procedure.

My blood counts were OK, WBC's were 3,400 which I hear is going to be semi-normal for me forever, and my RBC's (hemoglobin) were 11.2. I need to think of a way to get my WBC's up, for I believe that is the key to keeping my immune system staying strong and able to fight off any reoccurance. I must now do some studying on foods and such that can build the immune system. I know it is possible!

My cat scan results were all clear except for the decreased mass in my chest that may be nothing more than scar tissue. Dr. Cooney said it is typical of "bulky" mass disease in the chest to not respond completely to chemo, but that radiation is needed to finish the job. So I now have an appointment with the radiologist next Wednesday for a consultation on the extent of radiation that I will need. Dr. Cooney said that I will have slightly less rads than a breast cancer patient, and much less than a lung cancer patient. He said that the radiation will wear me down, but that I should not have any real problems with it, not even my skin. I will not have any radiation near my hair, so my hair is going to remain a force on my head. Also, according to my cat scans, Dr. Cooney thinks that I will not need any more chemo, but that we still need to see what the bone marrow biopsy tells us. He sent out for several special marrow stains that should be back in 3 to 5 weeks, so once again my chemo future is in the air, and the status of my remission is floating up there with it.

My mammogram results were negative, and that seems only fair! One cancer at a time, thank you!

As for my on-line status, I will be permanently back on the net this next Wednesday. The reason for my web-absence is that we moved, a feat I do not recommend to those filled with chemo. I really missed my computer, especially the blinking email icon and access to my web-sites, it made my computer seem like a dead entity. It just proves my theory that being on-line while sick makes one feel a part of the world, like being connected to a giant virtual support group! I will breathe freely again the second I see that blinking icon!

During my last chemo I had to stare at stacks of boxes and do nothing about it. My hands were totally useless at the time, so I used the time to practice the art of patience. The house is now nearing the unpacked state, and I love the brightness and lightness of this home that is the complete opposite of our old chemo house. Those chemo walls that I stared at for months are now in the past, and I am in the process of starting a fresh new life. Plus, changing abodes is one of the best ways to do a thorough house cleaning. For the first time, throwing away the old felt like I was tossing confetti into the air. It felt like a party!

Also, Brittany is now in Kindergarten and she loves it. Plus, I am so relieved that I just got her into the on campus after-care, and that the program they use is something that I know will benefit her. Taking her out of any kind of pre-school care this summer was the best thing I could have done. We had a few fun and relaxed months together after such a long chemo'd out year. We are able to laugh and play again!

9/19/96
I have finally begun my entry into the radioactive world, and I should be glowing in the dark in a little over a week. I got my first taste of radiology on Wednesday when I met with two doctors, both named Susan, and a medical student named Raymond, over a three hour period. Because Stanford is a teaching hospital, I have the extra added enjoyment of having a slew of fresh doctors-to-be in on my case. In fact, I can assure all these doctors that I will be an interesting case, and that is a great plus to me, for the worse one's case is, the more fascinated and attentive the doctors seem. So, you can imagine, I have these doctors entranced with my complicated disease. Well, it is complicated because I had every symptom in the HD book, and I was, as you all know, the worst case my doctor had seen in his 50 years of practice. I feel more than fortunate to be able to fascinate a new group of doctors!

The outcome of my long radiology consultation concluded in their request that I spend four days getting some new tests. I start with going to Nuclear Medicine for a Gallium scan tomorrow, where they will do the injecting part of the procedure. Then I go back on Monday for the actual Gallium Scan, followed by Tuesdays injection for Wednesday's Lymphangiogram. I am not looking forward to the Lymphangiogram for they will inject some kind of dye into my lymphatic system via my feet. The doctor said they will give me a local for the pain, but I have learned that the local is usually painful in itself. I am such a baby about pain, but I just do not like it after being jabbed so many times! I must tell myself that it will not last, and that the results will tell the doctors necessary information that will save my life. I am actually relieved that I am having these tests, for I want the doctors to turn me inside out if that what it takes to get every iota of HD cells out of my body.

I meet again with the two Susan doctors after my Lymphangiogram scan comes back, about two hours after the procedure. Then they and many-a-doctor will go over all my test results and make their decision on what to do radiation-wise. Then they will do the actual treatment planning and simulation which will set me up to start treatments the following week. The main doctor Susan, a big radiology wig at Stanford, initially told me that she would like to do extensive radiation on my chest, abdomen and pelvis, and that it should run 3 to 4 months. I am prepared for them to do exactly that. My theory is that radiation cannot be as rude as chemotherapy!

I just ran to get the phone and I got that dizzy head pounding sensation, which makes me think that my RBC hemoglobin count must be a tab bit on the low side. Or maybe I am just expecting to be feeling perfectly healthy too soon, especially since I have been feeling pretty close to normal these past few weeks. Dunno? I guess that my advice to myself would have to be, don't get up and run from a sitting position, and do some RBC making visualizations right away. OK, Dr. Diana, thanks for the house call.

Onto another subject - the internet, or shall I say, not being on the internet. I have now definitely proven to myself that being on the internet while ill is the best therapy, and conversely, not being on the internet while ill is a terrible stagnant experience. The internet is my walkway to the world, and I have missed it terribly, as if it were one of my closest friends. OK, I admit it, the internet is a live entity to me and it has become one of my closest friends. But like any best friend, no matter how much time passes, once you meet again, it is as if time stood still. I look forward to a big reunion!

Lastly, I have already begun a new addition to the Radiation section of this site. I hope to add it to my site this week-end, along with a few other additions I am working on now. It is just way too much fun!

9/23/96
AM Report - Last Friday, I went to the hospital, Nuclear Medicine, for my Gallium Scan injection. It was painless, no different than a blood test. They injected me with a radioactive substance, and I guess the glowing stuff has spent the week-end looking for active spots in my body to collect in. So, today, I get to lie on a nice long comfortable sliding bed-like thing while they take pictures of my insides. Luckily, I am feeling rather photogenic today.

Expect a lot of entries this week, for this is sort of a big hospital adventure for me. I get to roam around the hospital getting injected, and scanned and discussed heavily by a team of doctors. I am logging in a fair amount of hours at Stanford over the next few days, and during that time I should be able to gather an enormous amount of information. One might even go as far as to say I will be wiser by the end of the week, which is an important phenomenon for me, for I used to be known to many as - just a blond. But with my shorter darker hair, I have not heard a blond joke in eons. Perhaps someone could send me one right now! Send a joke!

PM Report - I just got back from my Gallium scan, and my first impression was one of boredom. I had to lie there for almost 2 hours, holding still for just about every kind of picture they could get. Next time I will wear a head set! But when they were done, I hopped off the machine and saw a 3-D rendition of my torso (hips to neck) on a computer screen, kind of like a see-through doll. Then the technician rotated my torso, and as he did he pointed out my liver and spleen. I could see my spine and a variety of other innards, and I even recognized my general shape. Imagine the Christmas card it would make! I must say, it was too cool!

9/24/96
I had my Lymphangiogram this morning. When I got there, I thought the technician would just need to use one foot, but she needed both. After a local anesthetic, she cut a small incision on the top of my arches, and once she got a needle into the lymph vessels she slowly injected contrast for about a half hour or so. I talked with the her the whole time, and she showed me x-rays she took showing the contrast going up my legs. I now have a few stitches in my feet, and I am supposed to elevate my legs a lot today. So I plan to kick back and watch the new "Spin City" show with Michael J. Fox, it ought to be good!
Tomorrow is a big day!

9/25/96
I have been tattooed! I now sport five, pin-head sized tattoos on my chest, just enough for a quick game of connect the dots. My radiation treatment is beginning with 180 rads a day beamed at the bottom half of my neck, down the middle of my chest, excluding my lungs, and out to my arm pits. This first course will go 4 weeks, a total of 3,600 rads for my chest. Then we shall move onto my abdomen and spleen, and if my white counts hold up, we will do my pelvis at the same time. If my counts go down, then we will do my pelvis after the four weeks of ab/spleen radiation. Each area of my body will get the same amount of rads. The side effects I might have on my chest are redness around the neck and back, some problem swallowing, and a lot of tiredness. I was told that my kind of radiation (I think they called it total Lymphoid radiation) will make me more tired than the kind that a breast cancer patient gets. I am still going to do my best to exercise a little.

My Gallium scans came back negative, and so did my bone marrow results. That means that I likely do not have any active disease in me at all. The mass that I still have in my chest is minute compared to what is was, and probably consists mostly of scar tissue. They still need to get the results back from my Lymphangiogram, and I really hope it tells them something important, for it was not a convenient test to take.

I begin radiation on Monday, so it is time to do some new visualizations. I want to shrink everything that is remotely related to Hodgkins, so I do believe that another visualization is about to emerge. I will let you know!

9/26/96
I just completed a new Wall of Phunts visualization for radiation! Now I shall work on another visualization for radiation. I must shrink any remaining or potential HD cells, and I must help the radiation beam directly at my lymph glands and the mass in my chest. I need to think about it first, but as always, the visualization will create itself!

9/30/96
I just got back from the hospital after a dry run for radiation to my chest. They lined me up, drew all over me, and then took a few x-rays to make sure everything was ready for my first real treatment tomorrow. When it came time to schedule my daily appointments, the technician told me that this week, besides the usual appointments, she had a BMT baby to do under anesthesia, which takes extra time. I understood that the baby came first, so she scheduled me for mid-afternoon appointments for now. She also said that the radiation schedule changes fast, so I hope to get earlier appointments soon.

I did not think that I was worried about the treatments too much, but I have had strange nightmarish dreams and an upset stomach all week-end. It is probably good news that in my dreams I ended up saving lives, including my own. Besides all that, I am prepared with lots of clear Aloe Vera, Vitamin E, Red Clover Tea, water and new visualizations. I am ready to be zapped and am relieved to have another treatment working for me!

I should find out about my Lymphangiogram results by the end of the week. One of my Susan doctors told me that she saw the scans and they looked abnormal, but that could just be because of scar tissue or benign changes left by the disease. So I will wait patiently for the official results. I am going to believe that they are fine!