an f-ing huge headache

I really didn't think there was a bigger headache than my cancer. Turns out I was wrong. What with all the diagnoses, changes is status, medical and surgical treatments, treatments that don't work or cause side effects, doctors who come to you with all kinds of news, good or bad, waiting times, scheduling times, meeting other people who's diagnoses and treatment is either way worse or way better than you, people who get into clinical trials that you aren't a candidate for, even though you were hopeful to be in the trial, awful hospital parking lots, side effects from chemo, changes in taste buds, gaining weight, loosing weight, exhaustion from chemo, speed from steroids, staying away from germs, trying to eat out without crowds, trying to see movies without crowds, trying to use the new Wii you got from your family, but your too tired to stand up and work with it, having your husband do most of the cooking and housework cause you're too tired, driving a long commute and feeling like you could fall asleep at the wheel, bad weather and watching the snow flakes fall while toxic meds creep through the IV tube into your port, nurses who are afraid of your port because it tilts towards your left breast, the nurses faces when they're afraid but they don't want you to know about it, watching blood and plasma dripping into your chair mates arms while they smilingly talk to you during your treatment, being offered hospital Jello as a kind gesture during your treatment (yuck), having to wait even longer to schedule tests and even longer to get the tests done, not being able to sleep because of anxiety, taking your sleeping meds too late because you think you can sleep only to find you're wide awake at 1:30 and need to be on the road in 5 hours, to late to take something now~!!, nose running, nose bleeding, sore nose, peeling hands, peeling feet, swollen feet, swollen fingers, aches, pains, sensitive nerve endings in your scalp, in your fingers, freezing cold one minute, boiling hot and beet red the next.......... the list goes on and on and on and on......
Turns out, the worse things in life are still with interpersonal issues. You can take the rest on with a smile on your face, but when those close to you hurt you, it hurts you to your soul. It makes you angry and insecure and you feel guilty when you want to spurt out all that you are feeling.
My human spirit is so strong, yet so tender, make sure your care for yourself..... be strong when you must and cry when you need to. Always remember..... you and you're healing are the most important thing. It's your job and responsibility to get as well as possible, do the best you can. Try not to let others, bring you down, even when it's harder than you think possible.
Peace

bummer

Today's note will be short. I'm doing really well in chemo. Seems to be working. But it's the little things that are the most challenging to deal with. The perpetual running nose. The sensitivity of my sinuses, non-stop. The bleeding nose that happens whenever I sneeze or blow.
Today's little nonsense was that my hemoglobin (HGB) went from 10+ (normal for women is 12 - 14) down to 8.7. That's not a good thing. Maybe it's why I have been feeing so tired this week. The chemo is suppressing my ability to produce Red Blood Cells (RBCs). So today I got a new "shot" Procrit. I gave it to my friend Fernando when he was really sick with cancer, God rest his soul....... very nice and lovely man and family. Now, I have to go back next week, MY ONLY WEEK OFF OF CHEMO FOR A MONTH, to have blood work done and probably get another one of these shots. It's a drag I know, but I hope the shot works. The shot itself is not painful, but when the medicine is going in, it feels like a bee sting. Hot.......This is the first chemo with the capacity to change my markers and my scans. I don't want to change it!!!!!
So that's today's story of woe.
But, as usual, I remain optimistic, always. It's the little things that make me bummed out.
Peace,
Jeanne

chemo tomorrow

Don't know exactly what I'm thinking right now other than I should be asleep, took the X, took the sleeper, had a glass of wine, yet inevitably the night before chemo, I can't sleep. That's tonight. I'm not thinking anything drastic, not afraid, at least not that I can detect, not spooked out, anxious yes. I guess that's what I feel if I really pick it apart. Anxious. It's not an easy feeling to explain. I'm not conscious of anything, but there's an undertow, something that makes me feel awake, not relaxed, un-calm, anxious. I wish I could pick it apart, then I could act on it. Perhaps I'll do some guided meditation after I write, Beliefnet, they have some good ones.... then maybe I'll be ready to sleep. 5:30 AM comes awfully quickly, especially when you're not sleeping too much. And to think I was yawning at 3 this afternoon and 4 and 6 PM. Crazy I suppose.
I was talking to my friend Elle at work today. She has 3 more chemo treatments to go.... then I think she's done. But she's in a clinical trial and if she's getting avastin, she may be part of a continued study till Oct. But.... she has radiation treatments to deal with next. I think she's amazing...... always at work.... hands like an alligator at the moment, side effect from the toxic stuff..... she's tired.... it's like looking in a mirror and seeing another face.... we go through so much of the same stuff.
Well. I think I'll read the other blogs on the site now........ hope you all are sleeping well.
Peace

birthday

Some would say they hate the day
Another year older, no other way
I have assumed an alternate bliss
A beautiful year, I have not missed
While others depress in the years as they fly
I'll be so grateful as a new year arrives
Be happy to see the world as it spins
Not fearing age as a new year begins
Be diligent to think of a new perspective
To live in the moment and be more reflective
Life goes on in its own scheduled way
We get to choose how we spend every day
Peace

kevin bacon

Lately I feel a bit like Kevin Bacon, you know the game 7 degrees of Kevin Bacon? Well, I have the 7 degrees of cancer connection now. I'm helping people all around me and it seems the numbers of cancer victims grows everyday.
Tomorrow, one of my best pals from work, who is currently in the second phase of treatment for aggressive breast cancer in NY, is seeing a new radiologist. It seems there's a new form of radiation treatment they can do with your body in the prone position. Your little or big booby hangs down and they do the radiation through the breast thus saving your chest cavity and chest organs from the later side effects of radiation treatment. So many changes so quickly in these fields. This was probably unavailable a year or 2 ago. Amazing.
A "new" friend at work, was recently diagnosed with stage 1 breast cancer. I was actually given her diagnosis information about the breast cancer before I had ever one conversation with her. She and the staff who work with her moved into our wonderful basement office space while I was on sick leave and I'm still catching up with the new staff. Anyway, a co-worker asked if I would speak to her, she was kind of like deer in the headlights having just been diagnosed. She couldn't even formulate questions. She's young, has young children. She doesn't want to be treated far from her home, so NY and Philly are really out, but she did agree to get a "big city" doctor's second opinion at Fox Chase, Philly I think. She is likely to have a mastectomy which will relieve her of the necessity of having and chemo or radiation. She has chosen to keep her other breast, I don't know how she came to the conclusion to do this or even if her doctors recommended bilateral mastectomy.
It's just so amazing to me now that I've entered this world of cancer. People come to me and say "you're such and inspiration to us" will you talk to my friend or husband or family member. I always say yes and I always will. I really don't know what help I am, but somehow the people come back to me or their friends or families thank me for whatever I've done.
Pretty soon, I'll be like the 7 degrees of Jeanne Caldwell. Wish I was in the movies like Kevin Bacon though.

ovarian cancer awareness

So today, I'd like to talk a bit about the very covert signs and symptoms of the type of cancer that I'm currently in treatment for "Ovarian Cancer." Of course if you have a family history of ovarian cancer, you should be followed closely by your gynecologist, have your ovaries ultrasound done and ALWAYS have routine CA-125 done. It's a simple blood test that "may" predict the likely hood of the presence of ovarian cancer if the numbers are elevated. If you have an elevated CA-125 your physician should immediately do an ovarian ultrasound. If the ultrasound is abnormal at all, a CT of the pelvis must be done.
So, if this is your first experience hearing about ovarian cancer, it can only happen to women, since we're the only ones who have ovaries. Symptoms are vague and are often overlooked which is one reason I'm hoping that the CA-125 blood tests becomes a routine part of a woman's annual Gyno exam, PAP smear etc. If the numbers are elevated an ultrasound must be performed to confirm if the ovaries have lesions/masses etc.
So back to the symptoms of ovarian cancer.
- abdominal bloating
- frequent urination
- pelvic discomfort
- change in bowels
- feeling full after eating regular portions or smaller than usual amounts of food
- low back pain
- abnormal vaginal bleeding
Are you getting the feeling that this disease may be hard to distinguish from other illnesses. You'd be correct! Often women are treated for urinary tract infections, GI tract disturbances, medications for back pain.
I met a woman, she has sadly passed on now. I met her at Gilda's Club in Hackensack NJ. (Gilda's deserves a whole blog of it's own and I'll get to that in the near future) Anyway, this was a woman of little means. She was on charity health care and I believe, but can't be sure that she had some psychological issues as well. Additionally, she had not support system, like family, friends or church. This woman originally went to her clinic complaining about bloating and GI issues. They gave her medications. She returned after completing the medication only to be scoped for GI problems and put back on new meds. This went on for a year!! They never examined her gynecological condition!!! Well, she was reading the paper one day and saw that they were having a free seminar at another local hospital and she decided to go. It was sponsored by "The Maureen Fund" which also deserves it's own day on these pages. At the seminar they handed out papers, one of which included a check list of ovarian cancer symptoms. The woman spoke to a Maureen Fund representative that day, they scheduled a gyno appointment and CT of the pelvis immediately. It turned out she had the same doc group as me who treated her. I can only say the best words about Dr. Dan Smith. He is my angel and has protected me at my very weakest moments along with Dr. Donna McNamara, my oncologist. The Maureen Fund helped this woman get diagnosis and treatment immediately, unfortunately, the disease was already at a very advanced stage. I used to see her at chemo once in a while, we spoke a bit, but not much, you're kind of tired and want to shut the world out when you're getting IV poison run into you to kill your cancer. The last time I saw her, she was getting a blood transfusion, she didn't look good, we didn't speak, she slept the entire time I was there that day. It was later, I heard from another Gilda member she had passed away.
Sad now, so sorry.
But remember kids, it's very important to have your tits examined and don't forget about the PAP and if you can get your MD to agree, get him or her to do an annual CA-125 blood test. BE SAFE and stand up for yourself.
Peace

What a freaking freezing day today. My mind has just been in a fog. I'm thinking about how nice it will be to return to work on Monday and stop slacking off being sick. That's how I see it, I'm a slacker. Sometimes this disease makes things happen to your body and you just can't get out of bed and when you do get out of bed, you barely have enough energy to do anything. Other times, and I'm glad it's most days, I feel normal. Like a normal human being. Productive, alive, energetic and happy. I'm glad those are how most of my days are spent. I find it's much easier to whine about how you feel when you feel bad, than it is to recognize when you're smiling and laughing and feeling good, happy, normal.
On a contemplative note, remember, you must face the things you fear the most and overcome them. (not exactly a quote from Elenore Roosevelt, but close to it, someday when my immune system isn't in shit shape I'll have that tattooed somewhere on my body, somewhere visible) Following that advise isn't always easy. Every one's life is scary sometimes. Other's have lives that are scary a lot. But try when you can to just look at what you fear, look at it right in the eye and spit!

This week

So I"ve been in the cancer system for 2 years now. It's been the holidays, the first week went well, the second one sucked. NO chemo last week, but non the less, I get sick as a dog with fevers, massive GI issues and a sinus infection. HAPPY F-ING NEW YEAR. I shouldn't complain, hey, I'm alive.
Sometimes are easier and harder than others and I've got to admit after 3 rather difficult rounds of different treatments, I'm finally on a medication that isn't trying to kill me along with the cancer.
I was sad today. A co-worker, an inner city woman from Trenton, Trevor, died on New Years eve. She was one of the nicest woman I have know, although she lacked what we know as an education, when ever I saw her on her breaks, she was reading classics. My mom, when she was alive would occassionally call me on the phone. If Trevor was the clerical person who answered, my mom would always compliment her on her professionalism. She even sent Trevor flowers and plants on occassion. My mom was an excellent secretary for her whole life and appreciated a skilled and talented person in the office. When you're a state worker, it's not always easy to get really professional help.
Anyway, I cried, I'll miss her...... she tried so hard.... chemo... radiation.... feeding tubes the whole gammet. I heard she had a heart attack......so in the world of cancer, what else is new?
Day by day, just take it day by day.