Another anxiety attack filled with hyperventilation and tears

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

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 ?

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

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

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

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

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

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

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

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

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.