Chemo's a No Go

My port was drawing fine, had beautiful blood return and took the drip for all the premeds fine. When they went to push my Adriamycin (the wonder drug that turns your Urine red and makes your hair fall out) it wouldn't go in. So I had too go for a dye study and have a clot dissolved. Chemo is rescheduled for Monday. WhooPee!! At least it means I can go to my office party tomorrow night. As my husband says I'll be sauced up.

Chinese Christmas Party

Well, it's chemo time again. Luckily a couple of friends of ours, Chris & Mary, threw a Christmas party on an off-chemo week. It was so much fun. This is the best group of people I have ever known. They all have such huge hearts and are so kind, but yet you can be a total smart ass with them and it's all cool. Here's a pic of me & Jerry at the party. As you can see the eyebrows are giving up their fight. I'm down to about 12 eyelashes. I thought I'd put some mascara on the other day to make them look larger. HA! Mascara looks pretty funny on just 12 lashes. I looked like some wierd anorexic Tammy Baker!

CT Results

Well I had a CT scan last week and the results are pretty good. The tumors in my neck are completely clear. The tumors on either side of my diaphragm have shrunk to almost gone and the mass under my right sternum/clavical region has gone from 6x5 cm to 5x4 cm. I have 3 more Chemo's left then we'll do another CT. If CT still looks good then we'll do another PET scan. If there are still active cancer cells, but no more shrinkage then we'll have to do radiation.

Thanksgiving is Canceled

Well Thanksgiving is canceled. I just wansn't feeling up to cooking and playing hostess, I've been too cranky. Every treatment it gets a little harder and takes a little longer to bounce back. Since I always do Thanksgiving at my house it is a bit depressing. Mom and Jeff are now eating alone, Misty has the twins and Nana's going to our friend Ginger's to spend the day with her family. They are all looking forward to it. It's better off this way anyway. The twins have been sending a cold back and forth with each other for the last week, Jeff is teaching 2nd grade and a lot of his kids are sick, so at least this way we are keeping the germs out of the house. It's a bit depressing, but I have to think of my health. I like Thanksgiving because it is the one day a year I cook usually and our house is structured very well for entertaining. This was also the last year Jeff and the girls will be here for the Holidays. He ships out for Navy OCS on Jan 22. I already bought everything so I am going to pop the Turkey in the oven and prepare the stuff that won't keep. A 12 pound Turkey for only me and Jerry! Last year I made a 16 pound bird for 18 people. We are going to be eating Turkey for weeks!



The good news is I've raised about $2,000 on Ebay in the last 60 days selling off a good portion of my collection. I figure I've sold about 350-400 doughboys so far. I still have about 200 left, but most will be gone soon. It's a little sad for me because they took so many years and travels to accumulate them all, but I'll keep a few as mementos. The treatments have gotten to the point where I can only work about 10 hours on treatment weeks and about 20 on non-treatment weeks. Since I'm paid by the hour, it is a little rougher for us. Luckily the money raised paid off my Husband's 2001 Elantra, so that's one less car payment. His was the big payment ($300, I was sending $500) and mine is only $150, so That's an extra $500 a month to play with. After I'm off all these meds we'll be able to roll his payment into mine and hopefully I'll have a clear title as a birthday present in April. I've been stockpiling meds before December 31 so I can get the most out of my deduction for this year on my taxes and will be able to save a little on meds next year. I have enough Vicodin set aside to kill an elephant now.

Nothing new going on.

Well there's really nothing new to report. It took a few days longer than usual to recover from my last treatment. Tonight I've just been listing auctions on Ebay. In the past 60 days I've had 200 auctions so it keeps me occupied and keeps Jerry busy going to the Post Office:-) Oh well, our bank account appreciates the infusion since I've only been working only 15-20 hours a week. We're not quite to the stage of only eating Ramen Noodles yet! Although even with insurance my at home medications alone run $200.00 a month. I can't imagine how people without insurance manage at all. Each of my treatments runs $12,000, and I have 12 of them scheduled! That doesn't include labs every other week and all the scans. Even after my insurance company disallows and adjusts the cost per their contracts, the treatments still run about $5,000. If you don't have insurance you get screwed more ways than one. First you have to pay out of your pocket, then you get price gouged on top of it! It's the people that don't have insurance you hear about that hospitals charge $100 for a Tylenol. For the record, after my insurance adjusts the cost of my Tylenol to 10 cents at the Doctors Office!



Oh well, I guess I'll climb down off of my soapbox before I really get going. Healthcare is an issue I have very strong feelings and opinions about and I don't want to still be writing at 5:00 am.





PS. If all goes according to plan we will be having a Superbowl/Chemo's Over party on Feb 6, so keep us in mind for your Superbowl plans, we have 2 guest rooms and Aero Beds:-) GO PATS!

I feel like an airhead

Well the fever is being controlled with Tylenol, but I'm still pretty light headed and dizzy. I'm going to rest for one more day because I don't feel like being behind the wheel of the car just yet. Walking makes me feel like I'm floating on clouds and a little swervy. I think my body has just gotten worn out and each treatment takes a little longer to recover from.

It's fever time.

Well I'm sitting here with a fever and chills. I hate having chills! I just took 2 Tylenol and we're waiting to see if my temp goes down. If it doesn't we're off to the ER. If it does I have to see my Doc tomorrow, who himself is sounding pretty sick. Such is the days of our Chemo lives!!

4 more years!!

Well, Bush took the election. 4 more years. Whoopee!! I can't believe Kerry conceded so quickly. Oh well, he's the better man.



It's chemo time again. Lately I've really been wanting to just go out and have alot of fun. I think it's sensing my own mortality after the bad spell a couple of weeks ago and feeling a little unattractive, frumpy and just wierd. I'm sure it will pass when Chemo is over.



On a positive note, I did win a prize in our companies Costume contest last Friday! Whewwwhoo!



Right now I'm just living every day to the most that I can.

The honeymoons Over!!

I've been a little remiss in blogging lately, but the last 10 days have been rough. My Oncologist likes to use the analogy of "Your first Chemo is like your wedding night, you don't know what to expect", if that's the case, my Honeymoon is over! I prefer "Life is like a box of chocolates..." only my entire box consists of chocolate covered cherries, which I hate!!



Over the last 10 days I've experienced weakness, cold sweats, light-headedness, accelerated heart rate, chest pain and even memory loss. We bought our house almost 3 years ago and I can't remember which switch is for the lights and which is the garbage disposal. No one told me I'd have to buy more silverware after Chemo! My husband is painting the Disposal Switch red, so I know not too touch! Talk about feeling like a 10 year old!



I had a Chest CT that showed a small blood clot at the end of my catheter so my Coumadin dosage is being increased to 2mg QD. The Muga showed no heart damage. We think maybe I was just over tired. I hate that I'm nauseas from about 1 hour after I wake up until I go to sleep. Everything I put in my mouth lately seems to make me more queasy. I think the only reason the anti-nausea medicine works is because it puts me to sleep for the next 15 hours so I don't notice I'm nauseas. One good thing about the sleep is that I don't notice how depressed I've gotten the last week. I'm starting to feel a little better, but I'm not near my usual Mary Poppin's, perky self.



I'm hoping that this just a temporary set back and my body will recoup with some extra rest. If this is how I'm going to be for the last half of my treatment, I have no idea if I'll be able to keep working. My boss says yes, but I feel guilty going to work and not giving at least 100%.

Anyone get the number of the truck that hit me!!

Well I definately got a reality check this weekend! On Friday I went for my post-chemo injection. Jerry's been working nights so I haven't seen him much without tubes protruding out of my chest, so we spent the day together for the first time in a few weeks. We did a little shopping and for the first time in our marriage bought something totally frivolous and impractical. Maybe it was the chemo brain affecting my judgment, but we threw logic to the wind and picked up a projection TV. It will take us until the end of next year to pay off, but we don't go out much and other than the mortgage, we have no debt so we figure what the hell. The TV was being delivered but we brought the stand home to assemble ahead of time. I was helping Jerry carry it in (it wasn't really heavy) and before I even picked it up my heart started to pound so hard I though it was going to explode in my chest. Then I got lightheaded and dizzy and almost passed out. I can't even really describe what it felt like, only that I never want to feel like that again. I've never felt such fatigue so suddenly in my life. It really freaked us both out.

Cycle 3 Treatment 1

Well it's chemo time again. I seem to be handling the treatments much better than before. I guess my body is adjusting to the poison. I even managed to go out with my work buddies for an evening out for a going away party. Here is a picture of me and one of the nuttiest people in the office Lani.

Cycle 2 Treatment 2

Well I am handling the 2nd cycle much better than the first. I don't come home on Thursday afternoon and pass out until Monday morning anymore. I'm still not very active, but at least I'm awake!!



I am a little bummed out this week. For starters, before diagnosis I get stuck with the most annoying symptom, extreme all over body itching instead of the most common, dramatic 20-30 pound weight loss (which would have been nice). Luckily I'm not itching anymore and all of the scratches have healed without any scarring. Then when I was diagnosed, I tried to think of the positive, CHEMO DIET!! Finally, I would be able to shed these last pesky 15 pounds that have hung on for dear life since I worked so hard to loose 50 last year. Unfortunately, the steroids that I have to take to combat nausea and keep my immune system up have the opposite effect. I'm up 10 pounds! Geesh, can't catch a break. I thought I would at least have a chance to evict my 'monthly visitor' permanently, but since the treatment is no longer MOPP, but ABVD the chances of that are less than 10%. The old treatment guaranteed sterililty in men and gave women a 50% chance at early menopause. I suppose that's a good thing overall for the masses, but I would appreciate having one side effect or symptom that can be a positive instead of annoying. Oh well, at least I don't have the nausea and vomiting. I just have to deal with jaw pain, headaches and insomnia.

Nothing big...

On Friday I was supposed to be at work at 8:30. Unfortunately, I think I turned off my alarm in my sleep and didn't wake up until Noon! Oh well! I got to work and everyone just laughed and said I must of needed the rest, all 14 hours of it. I don't think my boss even noticed I wasn't there until I called him at 12:15 and told I'd be there shortly. I'm not sure if that's good or bad. I like to think that it means I do my job so well that I have anticipated every need and handled all requests so proficiently there's never a need to come see me!



One new chemo development is that it's drying my body out so much I have an almost constant nosebleed from dry sinuses. Considering Ragweed is high right now and I'm sniffling all the time it's hard to believe, but I'm cutting back on the Allegra to try and combat the bleeding.



One good thing is that my headache finally went away.

OOOWWWWW!

Today is pretty bad. I've had a headache for 24 hours and it will not go away. It gets a little better for a while, then comes back with a vengeance. I've taken 2 Tylenol 3 with codeine and 2 Vicodin with little relief. They usually only last until about Thursday, so 2 more days to go!

Cycle 2 Treatment 1

I just started my 2nd cycle of Chemo and I am amazed at how well I am handling this weeks treatment. I haven't stayed in bed waiting for Monday morning to roll around (my treatments are on Thursday). We went out for Chinese today, I haven't felt any nausea or pain yet really. My tongue is starting too tingle so the jaw pain and mouth sensitivity will probably hit by tomorrow. My tongue feels like it would if you burned your tongue on pizza yesterday at lunch, but it lasts for a week or so. It's an annoyance, but manageable.

Chemo, Chemo and more Chemo

Well tomorrow is Chemo day. The only thing that really sucks about Chemo for me is that afterward I have quite a bit of jaw and mouth pain which also causes headaches. It takes about a week or so for this to go away and as soon as it does, bingo, it's time for chemo again! Oh well, I really can't complain because in the grand scheme of things I am getting off pretty easy. When you hear what other people go through while being treated for cancer I am only having mild discomfort by comparison.



I have a wonderful boss, who actually makes me feel guilty for coming into work sometimes so staying home and leaving early is not a problem. He lets me come and go as desired and everyone else at work is extremely supportive. They gave me a brand new IBM Thinkpad so I could stay home and work if I wanted to without coming into the office. My co-workers really have helped me maintain a sense of normalcy. Of course, my bank account does miss my working 40 hour weeks! I only work about 25 right now.

Happy Birthday!!

Todays Jerry's birthday. We went out for lunch and are trying to figure out what else to do today. So far we haven't come up with anything.

Everything's A OK

So far so good. Had a CBC today and my red cells and white cells are all within normal range, so no more shots for now and we are go for Chemo again next Thursday. The side effects have been prety mild so far. I get headaches in the afternoons usually sometime after 1:00 pm, but that's a small price to pay compared to what some folks go through on Chemo.



Jerry's Birthday is Saturday so we're going to dinner at Pappadeux. Thank God! I need an evening out. I'm tired of going from home to work to bed every day.



I ordered Adobe Photoshop yesterday, so hopefully over the weekend we'll be able to finish up the pictures.

Hairy Scary!!

Well my family thinks it's pretty funny to prance around in my wigs, so here they are...



Bonnie & Jeffrey

Saturdays Suck

Chemo was on Thursday and like clockwork here it is Saturday and every time I get out of bed I feel light-headed and queasy. I'm fine as long as I stay Horitzonal. Oh well, I'm still getting off the hook pretty easy, it could be a whole lot worse.

No more Neupogen, Yeah!!

White cells are back to >3,000, so no more Neupogen for now. Thank God, I'd rather have Chemo. I'll have my 2nd Chemo this Thursday. I'm starting to look a bit puffy from the steroids, but Oh well, I'll worry about that after treatment is complete. Here's a picture of me taken after work today in one of my wigs.

Pain, Pain, Go Away!

The last few days have been spent in bed or on my couch. The Neupogen injections cause rather intense pain in the lower back and hip regions. The Dr. told me to take Allegra or Zyrtec for the pain yesterday. Sounds wierd to take an allergy pill for pain, but the pain is caused by a histamine reaction in the hip region when the Neupogen starts stimulating white cell production. That along with a Tylenol 3 initially while waiting for the allergy med to kick in worked pretty well. I'm still a bit sore, but the pain has gone from a 7 or 8 down to about a 3 or 4.

No Chemo for Krystyna...

Well I went in for Chemo today only to find out I am Neutropenic so I have to have Neupogen injections every day until Monday then re-test my Blood to see if I can have Chemo next Thursday.



Neutropenia is a depletion of white blood cells which makes me more prone to infections. Normal levels of Neutrophils are 1500-7000. They will give Chemo down to 1000, I am at 971.



Oh well, C'est la vie! (Gaelle if you're reading this, that's for you!)

Birthday Party

Here's a pic from the girls B-day last Sunday. We hope to have the album up soon.

Hair today, Gone tomorrow...

Well I am 14 days post my first chemo dose and everytime I touch my head, my hand comes back with a clump of hair stuck to it. I've decided to shave off my hair once it starts really coming out for several reasons. First, it makes a mess! There's hair all over your pillow, your clothes and everywhere else. Second, you have to clean the shower drain every time you take a shower to remove the clog. Third, I'm not too vain about my hair, it'll grow back and hey, I haven't seen my natural color in 19 years so it will be a treat (except for the grey hairs that are bound to be there by now)! Finally, August in San Antonio, TX is a great month to be bald!

Personally, I blame my good friend Deb Price-Page. My hair didn't start falling out until I was on the phone with her today. Muah! You know I love you Deb!

Second Chemo is scheduled for tomorrow morning. One interesting side effect is the clumsiness! I am dropping everything and stumbling over my words making me sound pretty kooky!

 

All dressed up and nowhere to go!

Well I think the Chemo brain effect has settled in. Jerry is working from 8p-6a right now so he came home went to sleep around 9:00 am and I woke him up at 12:00 to get showered and ready for the girls party from 1-3 at Gymboree. We get dressed, purse is on my shoulder, keys in hand, when the phone rings. It's my Mother-in-Law. She asks me if I'm aware that when the party planning was in its' early stages, Saturday was the day, but Gymboree was booked so it was moved to Sunday. Well no I tell her, you never told me that and silly me, I didn't even notice the invitations were made out for the 15th. So here we are all dressed up with nowhere to go Repeat performance scheduled for tomorrow! At least we found out before we left the house. The Gymboree people would have thought us a little nuts showing up a day early for the party.

Happy Birthday!

Today is the girls 3rd birthday. Luckily the party isn't until Saturday because I'm having a rough day. It started with a headache and muscle pain last night. So I laid in bed on a heating pad with an icepack on my head. Come this morning it was still aching, so I called my boss and told him I would not be in. Good thing I did, I slept until 7:00pm!! I went to sleep around Midnight so I got around 19 hours of sleep, no wonder I'm having trouble getting to sleep tonight!

5 days post treatment 1

Day 1 - Feel great today. Did a little hat shopping, took the day off of work to be safe, but I got tired of being in the house. Besides, it was a tax free shopping day and JC Penney's is closing so they were having incredible sales!



Day 2 - A bit queasy today. Not getting sick, but took a Compazine. My Husband's boss is retiring and his party tonight so I'm going to try and make an appearance. The food was great! Maybe a little too great. Didn't feel too hot. I left early and asked Jerry's supervisor to give him a lift so he could stay.



Day 3 - Ok today. Ate some Mac & Cheese which made me a little queasy. Stayed in the bedroom all day, mainly because I was tired and it is actually too exhausting to sit up! So, I take my laptop to bed with me. Our house is Wi-Fi so I can do anything on the computer from bed. My mouth is getting a little sore (which is a side effect of 3 of the drugs) so I went to Walgreen's and bought some Biotene toothpast for dry mouth. After 2 days it really seems to be working well.



Day 4 - Back to work! Really tired. I feel like I'm going to fall asleep while driving home, so I took the afternoon off and came home to rest. Unfortunately, I was exhausted, but with Insomnia. Go figure!



Day 5 - Feel Great! A little bit of a tension headache brought on by jaw pain, which is a side effect of some of the drugs. I figured out that Chinese food is great with Chemo! I can eat a lot of it and there is no nausea! I guess MSG is good for Lymphoma! My mother in law will freak at that!

Chemo - Cycle 1 Treatment 1

I will be having Chemo every other Thursday. Each Cycle is 2 treatments 15 days apart. I will be in treatment for 6-8 months. After 2 months I'll have another CT and in 6 months I'll have another PET scan to see if there are any cancer cells left. The survival rate for my cancer is 80% at 10 years so it's almost "curable" but no one will use that term.



No problems after todays treatment. A little tired, but that's more stress than anything else. I just want to go home and go to bed! My initial treatment took 5 1/2 hours because of the preliminary drugs and paperwork. The Medi-Port is a godsend. They gave me some lidocaine cream called Emla to apply 2 hours before. Just slather it on and cover with a piece of Saran Wrap to allow it to absorb and you don't feel anything! Maybe I'll use the cream to get a tatoo, hhhmmmm!!



I am posting photos of my first treatment, even though I am not photogenic! I'm really much cuter than the pictures show and I don't have a triple chin like it seems in the picture. I got my hair cut short because the hair loss shows less and I'm not used to it yet.

Chemo 101

Well tonight me and "my loved one" attended Chemo class. I will be on the ABVD protocol, which stands for Adriamycin, Bleomycin, Vincristine and Dacarbazine (DIC). Half of the drugs cause hair loss, so I'll definately be going bald. We live in San Antonio, TX, so being bald in August is not a bad thing. It will be refreshing!

Drum Roll Please....

Well the verdict is finally in...



Hodgkin's Disease Stage 3B. This means the Lymphoma is in both the right and left side of my body AND above and below the diagram, but has not yet infilitrated my bone marrow.



Chemo will start next week.

Radiologists are supposed to look at pictures, aren't they?

Well today I am getting a mediport installed so I won't need IV's anymore. Cool! Of course it takes them 1 false stick, 1 blown vein and 2 hep locks to finally get an IV going.




Now, I don't know about you, but Radiologists are just supposed to look at pictures of xrays, CTscans, etc... right? I mean, they don't even take the pictures themselves, they just look at the pictures the tech takes. Keeping this in mind I was a little freaked out when they said a Radiologist was going to be cutting into my Jugular! Radiologist look at pictures, Surgeon's cut, right?... No! It's called Special Procedures. Yipes! What will they think of next? Housekeeping doing Vital Signs?!



Anyway... My appt is at 8:00 am. They tell me to be there by 6:30 am for labs etc... By 7:30 am I am ready to go lying on a gurney trying to stay awake talking to my husband. The Radiologist is nowhere to be found. They have paged him 3 times and emailed him twice. Finally at 8:15 am Radio #2 comes in to go over the procedure, sign the paperwork and show me what the Medi-Port looks like (surprisingly, it looks like a Star Trek communicator, One to beam up Scotty!).



They finally wheel me into the room at 8:45. Radio #2 said they prefer to put the port on the right side and the neck wound won't matter. Well at 9:10 Radio #1 finally shows up! He says he doesn't come in until 9:00. Well excuse me! Shouldn't you not schedule procedures for times you don't plan on being there?!?!? Anyways...





I'm all hooked up and ready to go when Radio #1 says he doesn't want to do the right side, so they move all of the monitors to the left. Then he decides he'll look at my CT's and notices there are enlarged nodes on the left and he will do it on the right. Move the equipment again! Now we're set. The tech gets me all scrubbed up and disinfected when low and behold the Radio changes his mind AGAIN!!! Now they move everything so he can use the left side. We get all scrubbed up again for the left side and he decides I now need another IV in the left hand (I already had one in the right). A cafeteria lady could have stuck me better than this tech that was there OOOWWWW! The port is installed in front of a rib where my chest wall ends and the breast tissue starts. So it kinda floats on top of my boob. Interesting.

Finally, at 10:35 we get started. Remember, it was supposed to start at 8:00 and be done by 9:30. This whole time my husband is pacing the waiting room hearing Code Blues and Stat pages for Doctors really getting worried. No one at the reception desk can tell him anything!



By 12:00 I am back in the waiting room to wait again for a chest Xray to check placement. The Xray gets done at 12:30 pm. I should be home in a Vicodin induced euphoria by now! I tell my husband to hand me my clothes and am so fed up by this point I tell him if the films aren't read by 1:00, I'm leaving AMA. They'll call me if there's a problem. At 12:55 they announce I'm fine and can leave!!



Now I know this is a long entry. My husband and I have a really positive attitude and pretty much nothing bothers us. BUT, this day just pushed us too far.

Stephen King's IT...

Today is PFT day! My allergist is giving me a Pulmonary Function Test to determine if my lungs are strong enough to handle the chemo. Yeah! You blow into this cardboard tube and a computer animated birthday cake simulates you blowing out the candles while a really freaky looking clown looks on. I feel about 6 years old!

Bride of Frankenstein

Well, had the Lymph Nodes taken out today. The node was taken out under General Anesthesia at Methodist Outpatient. The Surgeon used the natural crease in my neck for the incision line so over time the scar will fade and not be noticeable. That being said however, right now it looks like Dr. Frankenstein got a hold of me! The incision is 2-3 inches long with stitches hanging out and its black from the dried blood. As if that's not enough, my husband says I look like one of those snakes that swallows eggs whole and you can see it bulging out as it goes through them! They removed several nodes and I guess one little guy misses his buddies because he has swelled up pretty big in protest!

This piture is one week post-op. So it looks a little better than it did.

Surgical Oncologist

Met with a Surgical Oncologist today. They are going to remove some Lymph Nodes on the right side of my neck for biopsy. They have to remove the entire Node rather than do a Needle Biopsy to get an accurate Lymphoma Classification. We're looking at sometime next week. Dr. Newman's office is so good we got in and out within the 30 minute parking grace period and didn't have to pay for parking! WooHooo!

Cat Scan, Pet Scan, Dog Scan Anyone?

The PET scan wasn't as bad as I thought it would be. I took a muscle relaxant ahead of time and it really helped. The scan is laying down with a camera starting at your head and slowly moving down to the mid-thigh level. The whole thing takes about 45 minutes for the Glucose to work and 45 minutes for the scan. The Glucose injection binds with the cancer cells to make them more visible on the scan and to tell how far the cancer has spread through the Lymphatic System.

Muga Scan

Well today it's off for a Muga Scan. There is a history of heart problems with my father so we have to be extra careful with the chemo. All this and it only took my father 2 weeks to return a phone call for heart history so I could start chemo confident it wouldn't kill me by inducing heart failure.

"It's Bad News, but it's Good News"

In the words of my PCP...



Bad News...Cancer

Good News...Lymphoma



I now have 25 minutes to get to the Hematologist's office for a consult. This is good. Tell a hyper red-head she has cancer then put her behind the wheel of her cruiser to whisk off to another unexpected appt. Pedestrians Beware!



Dr. Guzley (my Hemo) says I'm stage 3 Lymphoma but will need a biopsy to confirm what kind. I'm still yellow, but the good news is my Bilirubin is SLOWLY going down, only 7.3 now.

Got Barium?

Yummy! Lemon flavored barium, my favorite. After choking down 2 liters of this stuff, it's off to CT my Abdomen and Pelvis.



1 hour after I left the Imaging Center my Doctor called me personally (you know that's never good). Something looks odd with my Lymoh Nodes on the CT. Lucky me, I get to drink 2 more liters of Lemon Barium on Tuesday (holiday weekend) and have IV Enhancement to CT my Abdomen and Chest.

Labs are back

Well all Hepatitis labs came back Negative. My Liver labs however are way out of whack!

Bilirubin 10.7 (normal is .2-1.3)

Alkaline Phosphate 652 (normal 20-125)

AST 162 (normal 2-35)

ALT 218 (normal 2-40)



YIKES!!! The lab had to re-run the blood to verify because they were so high they thought it was a mistake.

Hepatitis What?!

Well after one look at me, my Doctor and his nurse have taken to calling me the Banana. They do however promise to get me back to being a Peach. It's definitely not Carotene. Time for labs!



They suspect it's Hepatitis, so if it is, it has to be Hep A. I don't sleep with men that sleep with other men (unless there's something my husband isn't telling me), I haven't had a transfusion and I don't use dirty needles (only sterile needles for my drug use:-)!



Now I'm quarantined for a week with daytime TV!!

Projectile Vomiting

After reliving the famous "Pea Soup" scene from the exorcist this weekend, I Email my Dr again and make an appt for Tuesday.

They call me Mellow Yellow...

Well the Jaundice is very pronounced. I Emailed my Doctor and he thinks it is Carotene from the vitamins I have been taking. I tell him that the vitamins I take don't even have Carotene, but he says wait a week and call him if it's not better by next Friday.

Are my contacts dirty?...

I looked in the mirror this morning and noticed that I look like a summer squash! I have morphed into a yellowish looking special effects project.

Maybe I need a shrink??

Follow Up with Allergist. Itching has been somewhat relieved, but is still there. For now, nothing else to do. All labs are still normal.



I'm starting to think I'm developing some weird Obsessive Compulsive Disorder, maybe I need to see a shrink.

Possible Cause of my Hodgkin's Disease...

For the last 8 years I have dealt with numerous afflictions ranging from fatigue to pain. My Doctor's were always saying I had a weak immune system, but couldn't figure out why. For those of you familiar with the movie "A Civil Action" starring John Travolta(for more information, go to our Links page), you may be surprised to know that I spent some of my formidable years prior to age 5 in the same neighborhood where all the kids were dying from predominantly Acute Lymphatic leukemia. Had I stayed, many of these kids would have been my classmates and friends. My husband and I did some research on the chemicals involved with the lawsuit and did find research to support that early exposure to these chemicals can manifest in symptoms in the late teen and early adulthood years. While this is not the cause of the Hodgkin's Disease, no one knows what causes it, the suppressed immune system for so many years is a contributing factor.

I'm getting desperate...

Now I'm desperate! Maybe I'm allergic to something? Off to an Allergist. Same results. Still itching, but he has now added 7 new medications to try! Oh, he also recommends keeping bathing to a minimum except for the 'stinky areas'?! Do these Dr's really want us coming in to see them while we've been keeping bathing to a minimum?!?!?!?

April 2004

Well off to the Dermatologist! She thinks maybe the itching is caused by dry skin except that shouldn't make my palms and the bottom of my feet itch. So basically since my labs are normal, we don't know why I am itching. She tells me to not use dryer sheets, switch to Aveeno and use lotion alot. Also to keep bathing to a minimum (yeah right)! After following all her instructions and taking a course of Prednisone, guess what? STILL ITCHING!

March 2004

Well, still itching. I can't let that bother me though so I load up on Benadryl and Cortisone cream because we are leaving on a long awaited trip to Ireland! Unfortunately, by day 3 of our Ireland trip I am sniffling, coughing and using a box of Kleenex an hour. All this and I can't even track down some NyQuill. Come St Patrick's Day (our 5th anniversary) in the fair city of Dublin, I am absolutely miserable! I can't breathe and the fever is getting out of control. We find a clinic that gives me some flu medicine and that works enough for me to make the best of it. My first day back to work, my cough is so bad, my boss sends me home!

February 2004

The itching was driving me crazy! I started using props to scratch with. My cat's hairbrush was my preferred tool. My Plastic Surgeon's office said this was not normal and any itching associated with the lipo should have subsided by now.

January 2004

My husband and I had an agreement that if I got down to a certain weight, I could have liposuction for my 'spare tire'. So last year I joined a gym called Curves and 50 pounds later I was ready to go. That was a week before Thanksgiving. My Plastic Surgeon's office said that itching was part of the healing process, so when the itching started I wasn't concerned.

A brief timeline 1996-2003...

1996- I first started experiencing fatigue. The fatigue would common phases and last anywhere from a week to a month. This still plagues me to this day. I can sleep anywhere from 8-16 hours a day and never feel refreshed. My husband and I joke that if sleeping were an Olympic event I'd win the gold! I also started experiencing pain in my joints, especially my wrists, that was so intense there were times I would just cry because I couldn't hold a pen, make a peanut butter sandwich or even was my hands with our excruciating pain.



1997- My Doctor sends me to a Rheumatologist for a Carpal Tunnel exam. Surprise, the results are negative. Everything continues on except now the depression starts setting in from dealing with these symptoms all the time. There were nights I would curl up on the bathroom vanity in my apartment and hug my cat Merlin and just cry for hours. Luckily there was a bright spot that year. In October I met my husband, Jerry.



1998- Well, the year keeps going and I catch everything that goes around. If someone so much as sniffles around me, I'm out for the next week with a fever. I am diagnosed with Asthma (incorrectly) and have Sinusitis and Bronchitis at least twice a year.



1999- Symptoms still running amuck, but Jerry decides to marry me on St Patrick's Day anyway. At this point I have just learned to live with everything the best I can and no one really knows how miserable I feel.



2000- Well new insurance means a new Primary Physician. Despite having seen more Dr's than I care to count over the years, this one thinks I have Fibromyalgia and sends me to a new Rhuematologist who confirms diagnosis. Finally, a name for my pain.



2001- Having a lot of nausea and stomach pain. Finally end up in the ER on July 4, thinking my appendix had burst or something else that was going to kill me. Turns out my Gall Bladder has decided it wants to be evicted. That was the worst pain I could imagine! So a week later I say "Goodbye old pal" and bid farewell to this mysterious little green organ.



2001-2003 I still am having boughts of pain and fatigue. I have tried every arthritic medication known to man (much to my insurance companies delight). I still catch every bug that goes around. In 2003 alone, I spent weeks in February, May, August and November sick and on antibiotics.



Well that takes us into 2004... The year of the Cancer!