Virtual Living With Cancer is my personal journal about coping with the diagnosis of metastasized breast cancer. I spent hours literally on the internet researching cancer treatments, learning about proper nutrition for cancer patients. I agonized about how and when to tell my adult children.
Reading about someone else's personal health problems can be boring. However, the LIVING WITH CANCER NOTEBOOK RESOURCES PAGE has many links to sites that provide professional information about Cancer - Diagnosis of metastasized breast cancer, Cancer treatments, decision about treatment, Nutrition for cancer patients, Breast Cancer, learning more about cancer, Clinical Trials.
A BRIEF BACKGROUND: 1996 - 1999
In the Spring of 1996 a routine mammogram showed some activity in my left breast. A biopsy revealed malignant cells were present and a modified radical mastectomy was performed. Two of the fourteen lymph nodes removed were malignant.
After the operation and several Chemotherapy Treatments, I moved from Colorado to recover at one of my daughter's (Bonnie) home in California. I kept quarterly appointments for blood tests and for a physical examination by an oncologist.
There was no observable sign of cancer and I was feeling fine so I moved back to Colorado in June 1999.
This journal will also include notes from Richard's records of my medical appointments, treatments, and some of his observations.
09-15-99 Wednesday Someday I am going to write about all the trouble, time, and energy it has taken to transfer from a California HMO to a Colorado HMO although both have the same parent conpany.
So far it has been a month of numerous phone calls, differing/conflicting instructions/directions.
I need to transfer as soon as possible because my regular three month blood tests and physical exam are past due.
Today a lady from the local HMO came to help me (I thought)transfer my membership from the the HMO in California to the one in Colorado.
She was more of a salesperson than a patient's representative. She explained the various medical plans and discussed how they differed from the California medical plan.
Although the HMO's have the same parent company, I must cancel membership in the HMO in California and enroll as a new member here in Colorado.
She prepares the paper work and effective October 1, 1999 my new membership here will be in force.
10-06-99 Wednesday Appointment with Intake Doctor at HMO who entered my medical history - as much as I could remember - into computer.
He also entered orders for a blood test and mammogram.
10-25-99 Monday Mammogram.
10-27-99 Wednesday First appointment with Oncologist for routine check-up.
My medical records or copies of xrays from California could not be found on his computer.
The blood tests indicate
no return of cancer. A mammogram of the remaining right breast
shows no suspicious signs of breast cancer.
I am in good spirits although I have been feeling puny for
the past several months and I do have a slight swelling above
the left sternum/collar bone - nothing to worry about.
All the tests and examinations by an Oncologist every three months for the past three years or so have shown no sign of breast cancer. I figure that I have beat the big "C".
The doctor orders a chest x-ray which I usually have annually and it is time for another one. However, the doctor wants to take a look at the swelling above my long-gone left breast.
10-28-99 Thursday Oncologist left message to call him.
10-29-99 Friday Talked to doctor. They found three tumors in/on lung.
OOOh No!!!
10-30-99 Saturday Decided not to get flu shot.
11-04-99 Thursday Pickup two bottles of Barium at Radiology.
11-07-99 Sunday 01:00pm CT Scan.
11-10-99 Wednesday 02:00pm-05:00pm Bone Scan.
Check in at reception (no preparation needed)
11-11-99 Thursday Oncologist called and left message that he had the results and
needed to talk to Mom. He won't be in on Friday.
11-15-99 Monday Called and left message for doctor. Doctor called with results of CT and Bone scan. 6 nodules
in lung(s), large mass in chest wall.
11-16-99 Tuesday Appointment made for Friday for the CT Biopsy.
Blood drawn, filled prescriptions.
Left message with doctor he called back saying that Mom
can continue to take regular prescriptions, they won't affect the Biopsy on
Friday.
11-18-99 Thursday A woman from Radiology called to go over the procedure and
preparations for Friday's Biopsy with me.
11-19-99 Friday 09:30am Radiology for CT Biopsy.
11-22-99 Monday Someone called from HMO to see how I am doing after biopsy.
11-23-99 Tuesday 04:00pm Richard took me to clinic pharmacy and got regular prescription: Paxil
and Thyroid.
Oncologist appointment. (his nurse made the
appointment).
11-24-99 Wednesday Richard took me to pharmacy to fill Tamoxifin prescription
(hormone treatment).
I want to keep a journal about what is going on with my body, emotions, and mind.
It's not easy to write about/to think about the breast cancer metastasizing but there is no denying the xrays, CAT scans, radiologist's report, other tests that I can't recall and the oncologist's medical opinion AND the pain.
However, I am coping somehow, as bravely as I can - but I am not very brave about suffering pain nor am I ready to die. I keep hoping that the Tomoxifin will cause a remission.
11-29-99 Monday Someone called from oncologist's office to set up the one month
appointment.
Some days I feel the need to prepare for not recovering and make plans so the kids will have everything in order to make the final decisions. Richard knows what to do generally from what I've told him. Most of the burden will fall on his shoulders.
12-10-99 Friday 01:40pm First appointment with primary physician at HMO clinic.
Too busy to think about cancer.
I was busy all day sorting, addressing, writing letters and address changes to include with the Xmas cards.
I searched the internet to find a small tree to insert on the change of address notes. I spent hours (literally) reading about graphics and how to insert the tree.
Fortunately, I have a knowledgeable son and a great teacher who took his valuable time help me out.
He knows a lot of short cuts - if I can only remember all he has taught me. I am so lucky to have such a patient, kind,
Caring, warm, thoughtful son and friend whom so generously and graciously Shares his home with me.
Oh I am so fortunate! I hope that I can always show my appreciation for his help and hospitality.
I can't write any more today as I want to make preparations for celebrating Xmas Eve and opening presents this evening.
12-27-99 Monday 04:00pm Appointment with oncoligist.
He had her get a blood test and chest x-ray.
He gave me his card for me to call him tomorrow to find out the
results.
12-28-99 Tuesday Called and left a voice mail for Dr. Beers to call me with the
results of Mom's x-ray and blood test from yesterday.
He called and recommended radiation treatment at St. Joe's.
12-29-99 Wednesday B from St. Joseph's radiology oncology called.
Had Mom call her back, made appointment for this afternoon at 2:00 with Dr. Mateskon.
Went to St. Joseph's, met with Mateskon and got set up for
radiation treatment, that will start tomorrow at 1:00.
12-30-99 Thursday 1:00pm.
First radiation treatment
JANUARY 2000
Saturday, January 01, 2000
Another Century in a new Millenium!!! I watched some of the many
fantastic, colorful New Year celebrations from all over our world on two TV
channels - CNN and FOX.
The most exciting part of their programs was
instantaneous live coverage of several cities in the same time zone with
PIP - Picture(s) In Picture.
I predict that the TV industry is entering a new
era in this new century. It was a major undertaking for the industry.
We probably wont see this kind of world coverage on a daily basis soon
but in the immediate future especially when/if there is a world crisis like
environmental threat.
These pages are supposed to be about me, my feelings about my struggles
with life, my successes/limitations. But it is easier to write intellectually
about external matters. It isn't that I can't, but I resist learning how to get
into that type of thinking.
How am I dealing with a life threatening disease (is cancer considered a
disease)? I have a large mass of breast cancer coming from the top of the
upper left lung into the chest wall under, through and on top of the sternum
at its juncture with the collarbone. Also there are several cancerous
nodules in other areas of the lung.
The mass effects a nerve that causes
severe pain and another nerve that effects the throat that causes the
hoarseness and tenderness in the throat area.
The mass is being treated
with radiology treatments at St. Joseph's Radiology Cancer Treatment
Center and a drug Tomoxifen is for reducing or coaxing the nodules into
remission. Also, I am taking Vicodin for the pain.
I think that I understand the physical problems and treatments.
Maybe
tomorrow I can define my feelings. Mostly I am concerned that my death
(hopefully not for a few years) will not be a hardship for my children,
especially Richard will handle most of the final details, nor will there be any
ill feelings among my children about my very meager possessions.
01-02-00 Sunday Told Betty, Andree, and Bonnie about Mom's condition.
Mom had a rough night trying to sleep, the pain would get worse
when she would lie down.
01-03-00 Monday 1:00pm Radiation treatment. Picked up Vicodin Prescription.
Mom felt a lot better after treatment, even had an appetite in
the afternoon so we got McDonald's after getting her prescription.
It is doubtful that I can write these pages in the AM during the week when I have radiation treatment. Perhaps I will write after the treatment if I'm not too tired.
I really felt rotten yesterday AM. It took a great deal of effort to get ready to go to the Radiology. But I felt much better afterwards.
Last night the terrible pain condition when I am prone on the bed was resolved by some logical thinking, which I can do on occasion, by propping several pillows to lay/lie on.
The best rest I've had in bed for several days. Guess the pressure that the mass has on the nerve is increased when I'm prone but eased when propped up in bed. What a relief!
The cramps in my legs has been resolved (I think) by returning to my old habit of daily taking Vitamins - especially calcium and drinking more milk. When I was taking antibiotics and something else (can't remember what) for hoarseness and aching throat and neck, I got out of the habit of taking vitamins and didn't have my usual desire for milk.
Also, I haven't been eating as many bananas as usual because I haven't been grocery shopping lately. Betty is taking me to visit my mother in a nursing home (for fractured pelvis) today and for some light grocery shopping
01-04-00 Tuesday Mom tried sleeping with pillows propped up. This worked
better.
She felt good when she got up this morning, at 7:00am (she had set her alarm).
1:00pm radiation.
She said her ear popped in the dressing room after the radiation treatment, and that it had been plugged up for quite awhile, she's thinking it
may be related to the pressure on the nerve that also causes her laryngitis.
01-05-00 Wednesday Mom called and got an appointment with a new oncologist scheduled.
I am looking forward to another treatment today because I feel so much better afterward. Yesterday was the best day that I have had in ages. How sweet it is!!
Betty took me to visit my mother at the nursing home and shopping.
We had just kissed and hugged her "goodbye" when we were surprised by someone at the nurses desk asking if we were there for the Family Conference which was going to begin in a few minutes. I asked why I hadn't been notified. The headnurse checked her information about Mom and told us that the only relative listed was Alta.
I told her to put my name on the family list and to notify me when the next Family Conference was scheduled. We were at the conference before Alta arrived after she got off work from her primary job - and on her way to her evening job.
She looked exhausted and she was. Who wouldn't be with her heavy work schedule and trying to take care of Mom. I know she was surprised to see me and seemed hostile and resentful at first.
I hope that I didn't upset her by what I said at the conference. But it really made me mad when the social worker who was chairing the conference said that Mom would probably be released to go home on January 14.
I was already angry because Betty and I had just seen Mom in a wheelchair, her head leaning down almost to her lap, shivering and shaking. We had an attendant put her to bed get her an extra pillow for her head, another blanket because she was so cold, also another pillow for under her knees. She brought two thin blankets and one pillow. She couldn't find another pillow for Mom's knees so brought the other thin blanket, which she rolled up and put it under her knees. So when the SW started talking about her being released to go home
I knew that whoever gave her that information had not seen Mom recently.
I will try to finish this another time because I have to get ready for radiation therapy after I do a few other chores.
1:00pm Radiation.
I am so thankful that my children have given me so much support and care. I
had a mastectomy about three and one half years ago during which time three
of my children in Colorado, Will, Betty and Richard took care of my needs.
After chemotherapy Bonnie moved me to California to live with her. Andree
has been in NM getting another degree (PHD) and teaching at the University
in Albuquerque and I didn't want her to quit. Andree sends money, gifts and visits as often as she can.
The past summer (June) Bonnie and her husband Bill moved to help their
daughter Angela with expanding her small Arabian show horse ranch so I moved
back to CO to live with Richard where I have a small apartment and share the
kitchen with him.
Monday, January 10, 2000
Yesterday afternoon, Betty and Randy brought me two beautiful robes, four nightgowns and fourteen shirts for an early birthday present.
I wore one of the nightgowns and the warm and cozy pink robe last night. In fact I am still wearing them this AM and will until I shower.
We visited with them and showed them several features of the computer: Christmas pictures with imaging software, the Spanish and Gardening software they gave me for Christmas. We really enjoyed their visit.
Someday I hope to write more about how I am feeling about and dealing with cancer. It seems as if there are so many other things that need to be done.
Richard is mailing two letters for me today - to Will and Andree. I owe a letter to Billy D. - Writing takes a lot of time, thought and effort for me,even writing these pages take time.
Of course, I just played around all day on the computer and it was a fun day but a little wacky because my memory button was turned off.
Also, I am getting a lot of email from cousins, niece and nephew all of whom I am keeping posted about my Mother who has been in a convalescence home for a fractured pelvis. I called other nieces and nephews who don't have email capabilities to let them know about Mom.
I have to go now because there are chores to do before going to radiation therapy. Today the Radiologist-Oncologist will see me and tell me what the ex rays show about the progress of the treatment. However, I can tell that the mass is definitely shrinking.
01-10-00 Monday 1:00pm radiation and see doctor.
Doctor didn't say much. Just that she should notice shrinkage
over the next week and that it may become hard for her to swallow or get a sore throat.
Mom has a stomach ache (or something with her stomach), could
be from visiting with Betty and Randy yesterday (Sunday) and catching a stomach
flu.
01-11-00 Tuesday 1:00pm radiation.
Mom still has a stomach ache.
01-12-00 Wednesday 1:00pm radiation.
Mom's stomach ache/flu is gone.
01-13-00 Thursday 1:00pm radiation.
01-14-00 Friday 1:00pm radiation.
Did copay $25.00
01-17-00 Monday 1:00pm radiation.
Saw doctor.
Mom hasn't had a pain pill in two days. Throat's a little sore, the doctor had told her this would happen.
01-18-00 Tuesday 1:00pm radiation.
01-19-00 Wednesday 1:00pm radiation.
01-20-00 Thursday 1:00pm radiation, did copay.
01-21-00 Friday 1:00pm radiation.
01-24-00 Monday 1:00pm radiation and doctor.
01-25-00 Tuesday 11:30am Appointment with Dr. A (new oncologist). Stop taking tamoxifen, hormone treatment's not working.
01:00pm radiation. Got hamburgers on the way home (2nd time).
01-26-00 Wednesday 1:00pm radiation.
Helped Mom get her Medicaid paperwork done.
01-27-00 Thursday Faxed medical release to Oncologist in Boulder, to send Mom's
records to my new HMO oncologist.
Mailed release to Oncologist in Boulder.
Mailed in Medicaid application (paperwork).
1:00pm radiation, did copay.
01-28-00 Friday 1:00pm radiation.
02-01-00 Tuesday
1:00pm - radiation.
02-02-00 Wednesday
1:00pm - radiation.
02-03-00 Thursday
1:00pm - radiation, did copay.
Picked up Mom's prescription.
Mom couldn't sleep last night.
02-04-00 Friday
1:00pm - radiation.
Mom slept yesterday afternoon from about four or five in the
afternoon, until
almost midnight. Then back to sleep at 5:30am. Says she feels
great today,
best in quite awhile.
02-07-00 Monday
1:00pm - radiation and doctor.
02-08-00 Tuesday
1:00pm - radiation.
02-09-00 Wednesday
1:00pm - radiation.
02-10-00 Thursday
1:00pm - radiation.
02-11-00 Friday
1:00pm - radiation.
02-14-00 Monday
1:00pm - radiation and doctor.
02-15-00 Tuesday
1:00pm - radiation and copay.
02-28-00 Monday
1:30pm - CAT scan.
03-02-00 Thursday
10:00am - Dr. A
03-20-00 Monday
11:00am - Debbie (Nurse), start Chemo #1.
1:00pm - Dr. M, radiation one month follow-up.
03-23-00 Thursday
Mom isn't eating, and is sleeping all the time.
03-30-00 Thursday
Mom is feeling better.
04-04-00 Tuesday
Mom felt great, best since chemo treatment, had a lot of energy.
04-05-00 Wednesday
Mom feels good, but not as good as yesterday.
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