Surreal

Another anxiety attack filled with hyperventilation and tears

2006-03-18T22:22:00.000-08:00

As I await the results to my March 17th scans, I feel the anxiety in my bones, muscles, and chest. Everything hurts…eating, sleeping, and especially smiling. I am so tired of waiting for test results and what my chances are for the next 6 months. I try not to ask why? WHY? What did I do? What do any of us do to deserve this haunting? It is my own ghost that haunts me, my own death … too young to accept gracefully, too old to feel safe in a faith.
When can I stop holding my breath?

Time flies

2006-02-15T12:12:00.000-08:00

It has been over two months since my last blog. I suppose too much has happened to simply update you all. One month spent in the hospital, one month spent recovering at home. What matters now is not all the chaos and stories of my stem cell transplant… oddly enough some funny and some sad. What matters to me now is that I am home and have been since January 19th. I am getting stronger everyday, not out on any dance floors yet, but I am walking around and meeting friends for lunch or dinner, visiting the folks in the south bay, being silly at home with Thomas, or having friends over for food and conversation.
My mind plays with me at times as I fall into my little moods of sadness and fear for the results of my scans in a little over a month. I cannot go there though, that place is too dark. I prefer to just live day by day now and look forward to more beauty in life. There is so much more but it is too much now, maybe another time, over coffee perhaps.

Can I yell ?

2005-12-02T13:40:00.000-08:00

It is not just physical but mental, I am becoming sick mentally. I have nothing to stimulate me during the day. Everyday from 9am to 7pm I either have appointments at UCSF or am at home either on the computer or watching mind-numbing TV. My relatives visit which helps but I am still a lump on the couch. Yes, this changes when my counts are up and so I run errands around the city and try to get out of the house. I still have no one to hang out with or talk to, everyone works which is what I should be doing. Not that I want to get on the phone and make meaningless sales calls right now.

Honestly, I want to get on a plane and go somewhere beautiful and just forget about all the medical chaos that has taken over my days. Of course, I will stay and fight and do whatever I have to but I am so F**king bored during the day. My boyfriend comes home at night and it is great to be with him but I miss going to the park or to a movie at night when it is crowded or to a bar or club and hearing music and getting all dressed up. Forgetting.

I argue with my mother because she calls me everyday and wants to chat but nothing has changed in my life from day to day. I love her so much but I get frustrated and my terrible attitude that few have seen comes out. Then guilt sets in and I want to call back and apologize but know I still wont have anything to say.

I am at least reading ... Memoirs of a Geisha. It’s nice to go to another world especially during the many hours I have spent in waiting rooms these last weeks. I cannot even stress to what degree I hate hospitals. Despite the fact that these hospitals are saving my life and I should be grateful. It is just the association with that awful feeling chemo puts into your belly and your pores. I hope technology and science will lead to future medications that won’t do so much damage while trying to destroy these tumors.

It is scary how cancer is just everywhere I turn. In the last three years I have had cancer on and off and almost everyone I have known or talked to have had someone in his or her life with a history of cancer. No one talks about it until it happens to them, then it is just everywhere.

50 50

2005-11-30T11:11:00.000-08:00

It has been a while since I last wrote and quite a bit has happened I suppose. I had my family conference with my doctor. All the tests I took that insane week show that I am okay for transplant. Even though by own standards I do not feel my lungs are working as they should be, they tell me my lung and heart functions are doing better than they expected. Whatever that means? I suppose they are used to giving transplants to older people who are frailer. Pretty much the doctor said my long term survival rate after the transplant is 50 50. However, I learned a valuable lesson over the last 3 years, numbers mean nothing, so I am not going to get cocky now because I am considered a healthy candidate. Instead I am hopeful and grateful for any possibility I have to keep my future.

I had a lovely Thanksgiving in the hospital (sarcasm). Actually, I had a lot of great visitors on Thanksgiving Day and I am certainly thankful for that. Thanks so much!!
I wanted to get out early on Friday so I pretty much let them just give me everything at once. I felt like utter road kill until today I think. I am not up to my usual old tricks but I feel good.

This upcoming Monday I am going to get a special catheter put into a big ole vein in my neck. This I will use for the stem cell collection. I will not be in the hospital for this. What I will do is starting Tuesday at the ungodly hour of 7:30am go to UCSF so they can take out my blood, giving me back my red blood cells and keeping the yummy stuff for my transplant. I will do this every day until they get the amount they need. So my prayer for this week is that they can collect in one or two days. If they cannot collect enough stem cells than we are out of business here.

Oh I forget to say that my bone marrow transplant shows my chromosomes are totally normal so I do not need a donor!!! This is such good news!!

Well that’s all the medical stuff, assuming collection goes well I will probably begin the stem cell transplant process Dec 22. This will be the long haul and I am dreading it. I just hope this works!!!!

Happy Late Turkey Day !!!

More than just a Medical Update

2005-11-16T10:07:00.000-08:00

What a week! I am in the process of staging, meaning they are checking my body functions and measuring any changes in my tumor. Monday I was supposed to have a Muga and Pet Ct scan. A muga looks at your heart and see how well it’s operating. Unfortunately after waiting 45 minutes they were unable to access a vein and had to cancel the exam. With the Muga they want use an IV to take out your blood and then add something radioactive and the give it back to you. Well with out some kind of catheter or line my vein is not going to just allow some IV to do all that. There is another exam called an ECHO that they will do Thursday instead, his exam requires no needles, instead they use an ultra sound. They just scheduled me for what they could get first. I think by now they should learn to pick the exam that is less invasive on my veins. I luckily still managed to get my PET/CT scan done with an IV. I went to my clinic and with a nurse and 20 minutes of patience she got a line in. It was so hard driving across town to China Basin with an IV sticking out of my hand, very stiff.
When I was in the waiting room at the PET scan I saw this women who I would guess to be in her late 50’s, she was in a wheel chair and very week. I overheard her talking to her husband about the 2 cancers she has had, 3 strokes, 10 brain tumors, 6 surgeries etc. She was saying how hard it has been. I immediately started crying, not just for her but also for myself and the fear of cancer and how it can follow you for so many years. Her husband later told me she was first diagnosed with breast cancer in 1983 but kicked it quick, later came a series of strokes due to a family bloodline of something or other in the brain causing strokes. He said she survived them all well. They have kids and live in SF and seem to be very intelligent and active in the community. Sadly he finally said that she was diagnosed with a sickle cell lung cancer of sorts that spread to her brain and that doctors are giving her one-year to live. He said she is very week and tired but that she has always been a fighter so she always tells her doctors don’t give me numbers just fix me. They have been married for 36 years and this thanksgiving they will go to Yosemite with their whole family. I wish them the best. I could not get her out of my mind that day, she must have been quite a woman, fighting cancer for 23 years and still had a family and a life worth fighting for. Imagine all that pain and still wanting to live and continue.

I hope I find such a strength in myself, I also hope this will be the last time but I know it may not. I cannot let that drive me crazy though. The last 7 days or so I have been so sad and worried that I will die in a year and be robbed of my future and happiness. Today though I feel strong and I want to fight. The last two days I have been feeling much better. I slept at a friends place and caught up on my phone calls. All very positive.

Back to the tests, Tuesday I had a lung test that I am actually a bit worried about. I am not at full capacity. For instance the level of oxygen to my blood when I breathe is only 57% of what it should be. I suppose with chemotherapy this is expected however I know I have more treatment and I fear things like emphysema developing if my lungs continue to work less. I could not imagine being strapped to an oxygen tank and this only works for so long. This is a prime example of my paranoia’s getting out of hand. On the other hand my regular air capacity is at about 80%, which is good, and the oxygen in the blood cells that are flowing are at 96%. So some good some bad. They will analyze the numbers and my history and discuss the results with me Monday.

After my pulmonary exam I had my bone marrow biopsy. I am so glad my father was with me, it was one of those days you need daddy’s arm around you. After waiting two hours and eating some crappy Mexican food at UCSF’s pathetic excuse for a food court I had to get a bone marrow biopsy. First of all to remind everyone it was UCSF fault that I had to redu this painful test. GRR. So they gave me a delodid (not sure of spelling, but it is stronger than two vicodin) and two ativan, which is an anti anxiety. Now I start feeling a bit loopy and hope I wont feel much. WRONG! I am not sure if it was the nurse or what but of all three Bone Marrow Biopsies this was by far the worst pain ever. I could feel her pushing into the bone and this awful pain shooting throughout my leg. It was warm and aching. Yes, they numb the site but they cannot numb down in the bone...I burst into tears on the table and grabbed the pillow gasping for the air that I felt was leaving my body. They painkillers of course really kick in later and I was talking and walking like I had three drinks too many. I am sure anyone I spoke with can laugh at me today. I have to admit I do like painkillers but they never give you extra.

I am a bit anxious for my Monday results they will be looking at my bone marrow, lungs, heart, and how the chemo is working. Then they will give an assessment of how they think I will do in transplant and probably say something like “ your chances are…”

On a better note I got my latest blood work and my immunity is back up which means I am going out to eat and I can run around a bit until next Wednesday when I go back to UCSF for my last round of ICE.

Misunderstood

2005-11-13T18:19:00.000-08:00

I feel like my words are not coming through correctly. People think they cannot call me or that I am going to catch pneumonia if I breathe near them. This is the deal I get out of the hospital and I feel awful BUT I love to talk to my friends and I want to see people. I just may not pick up the phone if I am tired or feeling down, I will call back though.

I feel isolated. My love makes me so happy but I spend many hours during the day alone and I know everyone is working but I would love to see my friends. You can always visit, I live in the middle of things, I am not too far. It is true that I cannot be around people with full blown colds but please do not be afraid of me.

It is funny, in the scene you have a million friends but when you get sick and cannot party all of a sudden you can count the people in your life on your fingers. I do not blame anyone, I understand. Life is busy with work, errands, life in general. I thank god for the people who have been so supportive though, honestly I have had some dear people visiting me in the hospital and at home. I just do not want anyone to be afraid of me, I am still alive and here.

In hiding

2005-11-10T12:21:00.000-08:00

It is funny even though I miss everyone so much and get lonely sitting on the couch watching TV during the day; I still have been somewhat of a recluse. I want to call everyone back and will. I want to see my friends, I just cannot go to so many places and hope you will come by and visit. My sister, sister in law, parents, and boyfriend keep me pretty fulfilled but I miss everyone else as well.
I hope you are all well.

I got out of the hospital last Friday night and have been recovering not so much isolated this time. I changed nausea medications and I have been much more alert.

I have the staging exams next week to see if this poison is working, I hope it is. Monday, Tuesday, and Friday I have a heart exam, endosopy, bone marrow biopsy, and Pet/CT scans.

I will let you know the results when I get them.

Back to the bubble

2005-11-02T09:45:00.000-08:00

I am at UCSF now. I was supposed to come in Monday morning but there were no beds and then last night one opened up. I have not started treatment yet so I am still fully alert. They will put a catheter into my neck again today. Same as last time and then I am hoping to start chemo right away. I want to do better this time so they let me out Friday night instead of Saturday. I need to walk laps and be sure to eat and drink well.

I have a very talkative roommate, she is nice but I prefer to just chill on my own. So here I am escaping to the Family lounge to write a bit.

My cool shaved head is now a silly bald head. My wonderful boyfriend still makes me feel good about myself even without my hair. It is amazing the difference it makes between half an inch of hair and no hair. My head is so white. Oh well, it will grow back.

On the medical front nothing new. The last medical update said most of what is to come. I am just back at UCSF to do round two of my ICE chemo. I will update if anything new comes up. If anyone wants to call or text me, go ahead and I will send you the hospital number.

Hugs

Tears at 7:00 am

2005-10-30T07:26:00.000-08:00

I am sad this morning. Last night I slept in cupertino at my parents place and hung out with my cousin. We watched three movies and chatted, by midnight I started to get depressed. It was the big Halloween party night and I thought about last year when I was healthy and care free. I suppose it’s a combination of feeling left out and knowing that the next 3-6 months will never feel care free. I have needles, doctor’s appointments, and nausea to look forward to. I wish I had guarantees; I wish someone could say its 6 months and then you will be cured and never have cancer again. I know that is impossible and of course this pain is worth my life if I have the chance. I still feel sad though. All the winter holidays and my birthday will be spent in a hospital with a catheter sticking out of my neck and a variety of medications making me feel sick.

I cannot help but to cry this morning, I am scared. I go into the hospital tomorrow and I know of the IV needles awaiting me and the smell of chemical therapy invading me. I feel alone and I just want it all to disappear. Being in my parent’s house reminds of a time where cancer hadn’t entered my vocabulary, a time where the tiniest issues where all I had to worry about.

My life is surreal, my life, is this my life? Why am I even surprised? So many people have cancer, it is everywhere. I suppose at 25 I never thought I would have a three year history of cancer. Insane.

Medical Update 5 : 41000 Baby

2005-10-25T16:07:00.000-07:00

Where to begin? When I started chemotherapy (ICE) there is a whole regime, it’s a timeline. Day 1 into the hospital, Day 4 go home, Day 10 white blood cells go down and I am highly susceptible to infection, Day 14/15 my white blood cells come back and I am healthy and normal, Day 21 I go back into the hospital for the next round of ICE.

Today is Day 15, my white blood cell count was like 1400 on Friday low and dangerous, a healthy normal white blood cell count is 4000-10,000. Today I am at 41,000.
Great news, my white blood cells are higher than most. Why is this good? A number of reasons:
One: when they do the stem cell collection they need me to have a very high white blood cell count and this shows that my body rejuvenates lots of white yummy stem cell quick. Good sign for the transplant.
Two: I can now pluck my eyebrows without worry of infection!

I am going to explain more with a brief time line. Unlike what I thought there will be 3 rounds of ICE not two.
This Monday October 31 I go back into the hospital for the same as the last 21 days. Except when I get out I will do a staging process to see how the tumor is reacting. The week of Nov 14 I will do an endoscopy, bone marrow aspiration, Pet, and CT scan. All of this will tell us how the tumor has shrunk, lets all pray for this. I am hoping it will be very well gone. Then the Monday before Thanksgiving I will go into the hospital for my final (hopefully) round of ICE.

After Round # 3 of Ice on the 14th day they will do a blood count like I did today to see once again if my white blood cells sky rocket if they do then they will immediately start the stem cell collection called Foresis. This is when they put a catheter in my neck with two lumen. One IV will take out my blood and the other will return it, like a transfusion. The one taking out will keep the white blood cells and harvest the stem cell in a bag for the transplant. The Red blood cells will be returned to me. Now this will hopefully work the first time with my happy white cells jumping to 41,000 but in case it does not they will do it everyday until they get enough stem cell for the transplant. I am hoping once is enough.

Then phase two begins: The stem cell transplant.

This is all good news… my high white blood cell count shows that my body reacts very well and that I am hopefully going to have a good collection. Positive Thoughts.

Feeling Lovely at 4:45 am

2005-10-25T05:09:00.000-07:00

Its 4:45 am, why am I awake? I have been taking this anti-nausea medicine Compazine since I got out of the hospital. It has a sedative effect to put it mildly. Overall yes it works, however the first day off this medication and I have been hyper and full of energy. Hmmm…I have to say I feel much better than usual.
Why do these medications require even more of us? I feel sick to my stomach after chemo so give me something that will help nausea and not make me feel anti social and depressed as well. I understand week 1 out of the hospital is crucial. But it is now day 14 from when I started. I heard there is another medication that should help with nausea without making me feel tired, this one of course is more expensive and requires extra consent from my insurance. I really cannot complain too much. My fight over Insurance is non-existent compared to many others.
Now what? I have 6 days off the Compazine to feel human, before going back into bubble time… people you can call me now!!! I wont sound like a dope case!! Hahahha
Really I have been such a recluse, my phone rings and I either mumble hello, I am fine, can I call u later, blah, and I cannot even remember all that have called under my daze of meds. I have a bag of antibiotics and counter drugs for the antibiotics. My first night off compazine and I obviously am not sleeping too well. I took a valium at about midnight and here I am awake at 4 am.

I started reading again tonight. I am half way through this book called “ The life and Times of Dorothy Parker” It is interesting. She was a bitter cynic who loved to party( the façade) , had many literary lovers, and most famously was a writer for the New Yorker, Vanity Fair back in the early to mid 1990’s, center of the famous round table later know as the “vicious circle” of the Algonquin Hotel .

I want to quote one of my favorite poems of Dorothy Parkers …
“Razors pain you; Rivers are damp;
Acids stain you; And drugs cause cramp.
Guns aren't lawful; Nooses give;
Gas smells awful; You might as well live.

Back to me… I am totally awake on the fact that this is my first moment to really think and use my mind and read in 14 days. At this moment I feel GOOD .

One more thing my fabulous boyfriend shaved my head and I love it...Thanks Baby.

Where am I ?

2005-10-24T09:58:00.000-07:00

Its official ladies and gentlemen, as of this morning, Wafa’a is losing her hair. My boyfriend will be kind enough to shave my head this evening. I am almost looking forward to it… Might as well take some charge!!!

Not many new medical updates. A few though.
The slip they wanted to give me via endoscopy in the hospital in order to be proactive in case a tear forms in my esophagus was not put in. Mostly for bureaucratic reasons, it has not been approved yet. Therefore, I wont know if a tear will form, freeing food and drink into my chest, unless I get very very sick. So I have been told.

I am feeling better these days and feeling worse. I am better in the sense that I feel more alert; I am eating double what I was but unfortunately have not seen pounds raise yet. This is a crucial part of my day… FOOD. I am so sick of it but I need to increase my intake daily. I am also getting out of the house more.
On the other hand I am going insane, stir crazy, other than my dear boyfriend, million phone calls, and family, I feel so unbelievably alone. I start to wonder how much more if this I can take.
The drugs make me groggy, my vision blurry, my stomach hurts, and it’s a bit of everything. All of it just makes me feel blah. I want to feel NORMAL !!!!!!!!!!

Heavier Heavier

2005-10-21T17:24:00.000-07:00

I am 97 pounds now… I have lost 5 pounds in the last week. To me this news is catastrophic. I need to gain a real pound in a week and eat better or they will put me on a feeding tube. I cannot imagine the pain of that and embarrassment of this tube up my nose. I have to try but imagine being full all the time and having to eat more and more that is how I feel. No appetite. The doctor prescribed something that is supposed to help me gain an appetite. I hope it works. I am really scared now. Scared of a million things. I go back into the hospital for ICE# round 2 October 31st but I need to be strong. This last round of chemo floored me, I have been lethargic with no will to eat or do anything.
I am really scared now to be honest, afraid of losing too much weight and not being strong enough to beat this.

Am I awake yet ?

2005-10-19T17:49:00.000-07:00

So my cousin tells me to stop sleeping and write or read or do something. I try really I do! I picked up a book today and thanks to the anti nausea meds all I see is a blur begin to form.

So I went back to bed and lying there I began to wander what I would tell someone on the street that asked, “What do u do?” You know that completely unoriginal question people always ask at a party or dinner trying to get to know someone.

So what do I do?
I just started chemotherapy in order to get ready for a stem cell transplant. Before that I worked in marketing and as a buyer. This has nothing to do with who I am or what I love of course.

To answer what do you enjoy doing? A much better cocktail question!!!! I like photography; I miss my camera more and more each day I am stuck at home on bubble time. Shall I find my old manual 35 mm and start taking photots of the ceiling or my shoes?
I like to write but have been in a mental anti social coma the last week, not sure if I am out now but I am writing so that’s good.

My boyfriend says it would take 150 laps around the living room to walk a mile, I should do it but I might get dizzy or I am just too lazy. I walked a bit today… through the kitchen… down the hall, into the closet.

I like Six Feet Under… I have just completed season 4. Can you believe I am home a week and haven’t seen anything during the day. Where do the hours go? I think I have been sleeping.

Ranting and Raving

2005-10-15T12:43:00.000-07:00

I understand that Bulimia is a disease that must be worked out. BUT , as someone who has no choice but to puke everyday and continuously lose weight... I have to say , why would anyone choose this . I may offend a million people if i go on, but really it has been about two months that i have been wrapping my arms around the toilet and it sucks. I WANT to gain 10 pounds, I want to stop throwing up, I want a huge burger, I want sushi, I want to eat food that is any kind of tecture I desire. Too much to ask I suppose.

I also cannot believe that now i have to give myself shots... needles are fine but that doesn't mean I want to be the one injecting myself.

What else do I want to complain about ??!! I want to go out , I want energy, I want to feel beautiful again.

aahhhh poor baby, now i am just being self absorbed. As long as i get another 25 years !!!

Bubble Break

2005-10-13T16:26:00.000-07:00

I am home now after my lovely 11th Floor retreat. This morning they took the catheter central line (COOK) out of my chest. I had to lie flat on my back, legs up in the air and stay still while the Intern cut open the stitches and proceeded to pull out the foot long 18 gage (BIG) IV out of my subclavian vein. She asked me to hum so I wouldn’t get air into the vein… scary.

Well that was my little goodbye… I rested 45 minutes flat after and then He took me home. Oh my my how sweet home is.

So what now? I will probably go on a little walk to Dolores Park after finishing the movie The Crash. I am taking it easy!!

To my dear friends and family a special thanks for the calls, e-mails, and visits. I was barely alone one moment in the hospital.

Ok kids, I am back to the real world until October 31st and then back to business.
My blood count will be down the next 10 days so no major crowds, But assuming NO colds. I would love to see you all soon… for tea or a visit.

One little note to my fellow party comrades… please make sure I am not on any of your party blasts ... sadly no more parties for me including Halloween. So I hope you all have a blast and e-mail me hellos, But shove your parties up your….hehheh JUST KIDDING.

Love and Kisses

Long Nights ahead

2005-10-11T09:12:00.000-07:00

The Nightmare begins now. First I will warn you that I am FU##ED up. I specifically told them not to give me Ativan except for emergencies (which in my head means I am pucking all over myself. Anyway, I was just a bit blah and now I am on this ridiculous drug, which causes short-term memory loss and has made me completely drunk right now. You know the feeling. Like I am writing, rambling, and blurring all of a sudden.

I slept awful, terrible, how can I complain even more. They wake you up EVERY 2 or 3 hours to check your blood counts, to do vitals, weigh you, what else?? I don’t know? All I do know is I slept 10 hours but feel like utter hell. I awoke to the smell of eggs. Normally at home I know I am awake have an aciphex wait 30 minutes and then have a relaxing breakfast. So of course the 5 bites came back to haunt me, not to say I am not starving. I am so hungry barely ate anything yesterday and now if I miss breakfast then I have to wait to lunch.

Well at least the pain is gone… I was crying and so pissed off that my nurse who I buzzed 10 times never came that I got off my ass and drag my new best friend (The Medical box of chemical drugs) to the nurses station in full frustration. Imagine me there crying, begging for Tylenol, tripping over the IV sticking out from deep inside my neck, me in my slip PJ hanging off me... dragon tattoo on full show my few inches of hair falling over my eyes. I felt desperate. You cannot imagine how much drugs are available and wanted. After yesterday: 2 Vicodine, other numbing shots, 2 valium for sleep and possibley demoral and I don’t know what else purely for nausea. I get up after NO GOOD SLEEP, crashing on sobriety. I was practically begging for morphine or Tylenol and they gave me Ativan.

I will explain why I hate Ativan. Three years ago I had chemo and Ativan was my best friend. I forgot stuff, slept all the time and when I got off it. I could not sleep and felt like shit.
How hard is it? Just give me another complimentary drug, or just give me give me give me.

Hook Me Up

2005-10-10T22:07:00.000-07:00

It is 9:50 pm of Day 1 at UCSF, I have been here since noon and this is my first moment alone. The laptop I was hoping to have in the room is not working so I am in the family room using the computer. I spent the day with my mom, sister in law, dear friend, and my love. I had so much love and support around me that I did not feel the hours go by at all. Here I am alone for the first time and of course time begins to slow and silence creeps in. He just left and it was hard to say goodnight, but sweet since I still feel him here with me.

So how was my day?
I awoke this morning at 6:30 am after snoozing as long as I could. Yesterday day I enjoyed decompression in my big platform boots dancing my last dance for some months ahead. After a long wonderful day in full playa costume, I went home for pizza and a homemade haircut. Yes, he did it. Eight inches of long beautiful hair on the bathroom sink and floor. He did pretty well though… no not even at all. But with love and it’s really not that bad at all.

Back to today… 8 am pet scans at China Basin, 10am shuttle to the hospital, 11 am snack, 12pm check in to my 11th floor hide out. Not really a hide out … I was in back to back meetings with nurses, interns, doctors, nutritionists, family, and friends. I am blessed really. I cannot imagine being the one whose family is across the country or who doesn’t have a close network nearby. I love you all so much for everything.

To the veins: My veins suck! When I get an IV put in they tend to blow (self explanatory) so they had ICU come to my room to put a line into my neck. This was awful… imagine being awake as they numb up your neck and put a IV that stretches below the skin, near the collarbone, and into a big fat vein. OUCH. Well now it’s in until I leave, so hopefully no more getting poked. They just hook me up when I need a fill... Actually I am always hooked to saline or something. I had my first 2-hour session of Chemotherapy; I feel fine but not sure how the night will go.

As of now, I am coming down from the Vicodin with a bit of a headache and I am hungry because I couldn’t really handle dinner. Luckily I have crackers (sarcasm).

Enough for now, I will sleep soon.

Medical Update 4: The beginning

2005-10-07T14:33:00.000-07:00

I had an endoscopy last Wednesday to biopsy the tumor pressing on my esophegus. Stanford never bothered to get back to my messages , despite my complaints of loss of weight, a growing tumor, and vomiting. Luckily UCSF got involved and booked me an endoscopy within a day. I do not think I need to spell out the fact that UCSF is the best choice for me. Perhaps Stanford has a bit of an ego problem.

The doctors at UCSF have been great though and I feel I am getting quite a bit of information now.

It is official : Biopsy concludes that the tumor has almost all characteristics of Hodgkin's. They could not find the main cell with the samples but all else concludes Hodgkin's. The tumor is beginning to grow into the wall of my esophegus, which is why my doctor feels the need to rush into chemotherapy this coming Monday.

One fear due to the tumor is that when it hopefully shrinks it will create a hole in the wall of my esophegus where food etc may freely flow into my chest. To be proactive they will perform a third endoscopy on me while I am admitted, in order to put a kind of slip into my esophegus that will hug the walls and seal a possible hole. This will be in for approximately 6 weeks until the wall naturally heals itself.

This Monday I will be receiving ICE chemotherapy which is the 6 week outpatient chemo. Meaning I will be in for 3 days mostly due to the fact that they want me on hand to perform all kinds of fun pokes and prodes on me. They say this is not because of the major fears on infection such as with Stem cell. It is just easier for the nature of the treatment. There will be a set procedure for each of the days. I will be out of the hospital either Wednesday night or Thursday morning depending on bloodwork etc.

When I go home I will just rest, they say the blood and immunity begin to be affected a few days after chemo. I will have my blood monitored and when I am well enough I can go back into the hospital for round 2 of ICE. Most likely after 3 weeks. I will not be on house arrest but don't expect to see me at any underground parties .

All in all despite a morning of tears and venting, this is all positive and heading in the right direction.

I had a lovely afternoon with a dear friend of mine and hope to continue my social weekend before 3 day lockdown. I will be online in the hospital so that is great, I can also have visitors, and I don't have to take out my navel ring .

So kids.. Wish me luck.

A bit of me today

2005-10-04T13:35:00.000-07:00

I am in a strange world these days. I can truly say I am happy, yet I cry at least 5 minutes a day. He makes me laugh and smile but I still have this little fear in me that surfaces during random moments of the day. Each night in the warmth of bed I think of each night I will sleep in the silence of a hospital room, with its white walls, linoleum floors, and the smell of sanitation. I live for the smiles and laughter and chaos of the real world.

Yet in this “real world” I border anti social. I rarely answer my phone unless it is in the present … meeting someone or scheduling appointments. I get calls from my sister, sister in law etc who want to hear how I am. I get long beautiful e-mails from caring friends and I want to respond and cannot. I do care and I do appreciate the thoughts. I suppose when SBC finally gets me online from home I will have more time. Right now I find time here and there to peak into my e-mails. Always happy to hear how everyone is doing.

I am rambling now. I don’t feel too good this week. I have a cough ever since gingerbread last Saturday, not sure but maybe all the smoke. Parties mean less than they used to. They are still fun but with my life it is no longer a priority. I much prefer a play or friends in our living room. Maybe it makes me sad to think of the parties I will miss. Or maybe my life is just more important right now. Maybe I just prefer to sit face to face and talk or see a live band. I have tickets for Cat on a hot tin Roof, Tennessee Williams is my favorite playwright. I am really excited to see his work on a live stage for the first time.

I was watching my diving video from Thailand and it made me cry. I just wanted to jump back into that beautiful sea and drift with the waves, bouncing around with the sun on my face. It will be a long time until I can go back there.

I guess it is all that makes me cry that makes me fight now. It is this life today that I am fighting for. I suppose that is where I am at right now.

How much isolation ?

2005-09-30T14:53:00.000-07:00

Well it seems I wont be in the bubble I expected, however I will use the term bubble time as my isolation period.
Yes, I can have visitors anytime as long as no one has a cold or flu’s etc. I will have a laptop and will be keeping up my blog and correspondence throughout my bubble time. I know everyone has their lives and work and all I expect from people is to be themselves. E-mail is great and I hope I will get lots of e-mails to write back to; I will also be on Yahoo IM. People can visit if they have time but I hope everyone knows that I don’t expect it. I know hospitals suck and it’s not the most exciting thing to do, so e-mail will be lovely.
I can watch movies, read magazines, hang out with people, and they will even force me to walk 12 rounds of the hospital a day, which is a mile. I may be more in shape there than out hear in the real world.
When I am not in the hospital I should avoid large groups for a bit and during flu season I will be more of a homebody for a couple weeks after stem cell transplant but then I should be back into the real world. On a good note: The doctors are positive and say that I am healthier than 99% of the people they treat. I know numbers don’t mean anything but I will trust that I have a fighting chance and I hope to live a full life. I just need to be willing to give my 100% and I will cry and be sad at times, but as long as my will stays then I hope to see you all in about 25 years.

Medical Update 3 : ICE vs BEAM

2005-09-30T14:45:00.000-07:00

I had a meeting at UCSF today with a very nice nurse who will pretty much be my contact. I have her number stored in my phone and I am ready to call . Nice to finally have people talking to me. I have been leaving messages at Stanford for my biopsy the last week and a half and it’s been a nightmare game of phone tag.
The nurse said that we are pretty much held up waiting for the biopsy at Stanford, this is the Hodgkin’s Biopsy not the bone marrow biopsy. It seems that a group of top Lymphoma doctors at UCSF had a meeting to discuss my treatment ( heheheh), so much attention.
Assuming that I am being treated for Hodgkin’s with my own stem cell, they are debating between ICE chemo and BEAM chemo. I love these names!! The doctor that has seen me and who is highly recognized seems to think BEAM the inpatient, more intensive 3 week chemo may be the way to go. However this is up to debate since my history has been relatively focused tumors that were in one place and generally smaller. The issue is stimulating my stem cell into the blood… something like that. In the end I am willing to do what is best for me. I prefer to be home but I will do whatever it takes. On a positive note I can get a month break after this before starting the transplant.

Medical Update 2 :Getting answers at UCSF

2005-09-28T13:36:00.000-07:00

The latest in hospital bureaucracy… maybe it is because I am a 25 year old with a stubborn attitude but I cannot stand a rude receptionist. I had an appointment with UCSF yesterday and my appointment was specifically for blood work at 1:20 and the Doctor visit at 2:20.
So when I am standing around for 40 minutes hungry and surrounded by older sick people I of course start to get aggravated. I know this sounds awful but I immediately was annoyed that there were no younger people. Am I the only 25 year old with cancer or what??? Ok, yes I am terrible but I know other young people exist with cancer and I would feel better if we could see each other for once.
I of course begin to bug the receptionist who proceeds to tell me they have this amazing system that works… so I respond well why don’t you tell people ahead of time so we don’t expect to be actually helped at the time of our appointment instead of 1 hour later. Her reply was that “no one would show up then”Exactly my point!! Finally with her attitude she says that “ they have been doing this for 5 years and it is nothing new “ I told her “ well I have had cancer for three years so I am not new to this either !!” What a B##ch!
Finally, I get my blood work done and get to see my DR around 3:00, maybe later.

The doctor was nice … We went through my history which he described as somewhat odd. It would take me a while to go through all that now so I will add a history blog later... But pretty much this is my 4th recurrence of a cancer that should normally have a 95% cure rate the first time. As usually I have to be unique!!

Back to the present… well looks like in the next two weeks I will do a biopsy, more CT and Pet scans, and a bone marrow biopsy.

The Bone Marrow Biopsy will be to check two things…
Is there Hodgkin’s in my Bone marrow? – If yes then we clean it with chemo before the stem cell transplant.
To see if past radiation has caused my bone marrow to become abnormal meaning a possible lead to leukemia etc. – This is the scary one! If my bone marrow is very abnormal and dangerous to give back to myself then I will need a donor.

Now there are two types of transplant …
There are two types of bone marrow transplants:
Allogeneic Transplant -- The patient receives bone marrow or blood stem cells from a donor who may or may not be a relative.
Autologous Transplant -- The patient receives his or her own stem cells that were collected and frozen before the high-dose chemotherapy or radiation treatment.
http://www.ucsfhealth.org/adult/medical_services/blood/bmt/index.html
The Autologous is the one we all prefer since it is much easier on the body and the rate for surviving treatment is significantly higher. There is no point in going into my fears on these two, I will just wait and hope that I will not need a donor. This I should know in two weeks after the bone marrow biopsy reports come back.
Step one will be either outpatient chemotherapy (ICE) for 6 weeks or Inpatient chemotherapy for 3.5 weeks. I of course prefer to be home during chemo so I am hoping for ICE.
Therefore I will either be admitted in approximately 8 weeks for Stem Cell with outpatient chemo or I will be admitted in about 3 weeks to start inpatient chemo before they then do the high dose chemo + Stem cell transplant which itself takes 4 weeks. Uggg. Can you imagine spending 7 weeks in a hospital?

Medical Update 1

2005-09-23T12:08:00.000-07:00

Since I have been having trouble eating the last month or so… meaning food doesn’t go down much and has a tendency to make an encore appearance. Lovely.

To try and get to the bottom of this, last week I had an endoscopic ultrasound and biopsy. The biopsy came out inconclusive since my esophagus was so tight that even the scope would not go down. They tried to get a needle into the tumor and did, but they still could not get enough of a sample.

The reason we need a biopsy is to know exactly what we are going after . Of course, the assumption is Hodgkin’s but I have had radiation to the chest and in this day and age … well who know what other little monster might be after me. To be 100% clear on treatment myself and Dr’s agree that a Biopsy is absolutely necessary.

The funny (but not really) thing is my monsters are always problematic… one of my recurrences the monster was sitting near my heart so we tried this needle biopsy aided by a Ct scanner. After signing that the hospital was not liable if they killed me (a whole blog on its own), they gave me a wonderful thing called morphine and I remember looking down and seeing this big needle poking out of me. I found it to be oddly humorous. I cannot tell you how many times my medical procedures had made me laugh, when I am not crying of course. Well that little needle biopsy didn’t work either so we did an endoscopic biopsy at Stanford, yes didn’t work either. That time we just made the assumption it was Hodgkin’s and started radiation. Now with stem cell on the way … I am not accepting any assumptions.

I have completely gone off the topic… like I said the biopsy I had last week did not work. Therefore I will be doing a 2^nd biopsy at Stanford where they have a smaller scope that the doctor’s hope will fit into my esophagus. If it does not fit they will do a small dilation procedure. This does not thrill me since if they dilated too much then they can rip my esophagus causing the need for a huge surgery that could possible kill me. I am sure that I will be signing another release form for this.

I have to say if a doctor is being paid xyz dollars and has a degree that cost so much then shouldn’t he be liable to do his job without killing me. I cannot even tell you how frustrating it is to be on a bed in the surgery room when they start telling you all the ways they may accidentally kill you and then please sign that you gave us permission. Ridiculous!!

One thing I do know now is the reason I am having trouble eating is because the tumor is pushing on my esophagus not because of GERD/Reflux or scarred tissue on my esophagus from radiation. Finally, some information to go on.

I also have an appointment next week with my new oncologist at UCSF, who was very hard to book, looks like there are plenty of cancer patients to go around. Anyway, I am actually very grateful to be going there and I really hope they can help me. I do get frustrated (see how many times I will use this word) but deep down I thank god and science every day for a little help.

Enough for now.

Morning Ramble

2005-09-23T10:55:00.000-07:00

It is mostly about getting things in order before I start treatment.

Looks like I will be having a stem cell transplant: (http://www.ucsfhealth.org/adult/medical_services/blood/bmt/index.html)

I moved into a new place and am fixing it up now; cleaning, etc… it is fun actually. I want to come out of the hospital to a warm place not an apt of boxes. Luckily the place is looking more and more like home each day. It is a great distraction from the upcoming nightmare.

It is strange how my thought processes have changed. In the past when I had my recurrences I was more annoyed and frustrated that I had to schedule in appointments and disrupt my life. Radiation was a relief because at least I wouldn’t have to lose my hair again. There was a time I was more worried about hair loss than dying of cancer.

This time I feel different… I don’t care that much about losing my hair and no longer going clubbing (huge part of my past) … all I really care about is living so I can have a future with my loved ones… my family, my boyfriend, my friends.

It is disappointing though … I may miss a dear friends wedding (maybe not though), I will miss all the parties my friends are going to, I will lose my long beautiful hair … But if I get at least another 25 yrs it is well worth it.

Honestly, I fear stem cell transplant more than the monster sitting on my esophagus or near… its never very clear. Reading about the side effects make you wonder if it is really worth it all. Lets see, there are about a million possibilities for infections that cause this, that, and more of whatever. Seriously, the link is a nightmare. Not only will I be poked and prodded and sucked dry but then I will be a sitting duck with no immunity. Let’s hope the hospital can keep me from being infected by the zillion germs that live on us already.

I guess its all about chances and risks… I take risks all the time. I have walked to my car at night alone, I have gone diving, I go to countries that have a history of war, I go to countries that recently had health epidemics, I fly overseas at least twice a year. I step out my door everyday into a world of violence, natural disasters, speeding on the freeway, other people who have a chip on their shoulders, etc… the list goes on and on. Ok, so some Doctor tells me my long-term chances are lower than the 95% cure rate 3 years ago. Lets say 20% - 30% maybe more maybe less…does it matter, I have learned that there is no cut and dry answer to any of this. It is all a matter of my life and it cannot be compared to anyone else, no matter how similar his or her stats are.

a new flavor

2005-09-22T17:16:00.000-07:00

This is the fourth time i have had Hodgkin’s Lymphoma since my first diagnosis March 2002. Is it easier? Is it harder?
Thoughts begin to develop as the years go by and the disease continues to haunt me...
Am I going to die? (ok that’s obvious )
What are my chances? (percentages begin to decrease) ?
What the F**K ? (Obvious)

Fears set in ...
Death
It wont go away, it just keeps coming back.
My immunity is diminishing.
I will never have little cute nightmares running around (kids).
I will fade away in the white halls of a hospital.

Strength pokes its head through...
I kicked it 3 times already.
I have amazing friends and family.
He is amazing and supportive.
I have gone though a million trials that I have survived.... war, teenage rebellion, decompression and artial gas embolism (diving), cancer 3 times so far, most awful the last two presidential elections!!
I have to say it... I am a survivor and I am filled with a strength that sometimes annoys even myself.

Yes, of course there is more… but this is my start.