Always in our hearts and Memories...
Carcinosarcoma Ovarian Cancer - Stage III C
This page was developed to spread the awareness of Ovarian Cancer. Particularly Carcinosarcoma cancer. There are no known tests at this time to find this cancer, just women's intuition.
Remember, you know your body better than anyone else. Even better than your own Doctor. Be polite, and persistence. Challenge the doctor by asking them how they derive at their conclusions. E.g. Why do you think it is gas when I have not been passing any? Remember Doctors are humans. They can not nor should they know everything. A good doctor is one who knows what he/she knows and does not know and would not hesitate to refer you to someone else immediately.
In Memory of Karen We love you. See You Soon. :)
It has been a gut wrenching experience that I do not wish anyone to go through. Unfortunately, since there is life, there is death. We had 30+ years together, with 26 of these being married. Karen raised three GREAT children and until the Cancer, none of us have ever been seriously sick. For this we are grateful. Money can not buy good health.
After piping at the 2010 "race for the cure", Maura and I got in the car to head home. Maura was very quiet. I asked her if she was OK. Maura replied, that during at the 2009 "race for the cure", while walking behind me as I played the bagpipes, Karen had stated "how lucky our family was that none of us have Cancer"... Who knew, that 6 months later Karen would be diagnose with Ovarian Cancer.
Thank all of your for your support, condolences, prayers and sharing memories of Karen and sorry it has taken so long to send out thank you letters. We figured, since each of you took time to help us honor and remember Karen's family, we at the minimum, should reply back to each and every person individually via the U.S. Postage. - Maura, William, Emily and Tyge.
Karen was brought up Methodist, I was brought up Lutheran. We both believe that there is something bigger and better than Earth and someday we will all find out. Karen and I also agreed that all people, religious or not, are good and deserve respect. The reason for having said this, is that at Karen's memorial service, which was at her Methodist church, every religion you can imagine was represented (Hinduism, Buddhism, Lutheranism, Catholicism, Sikh, Jehovah's Witnesses, Mormonism, Protestants, Muslims, Roman Catholics) and non-religious people too. This is how Karen viewed the World. People from different Cultures respecting each other. Simple philosophy, but hard to do at times.
In 2001 Karen adopted MacGregor from the animal shelter. Then in 2002, Seamus was presented to us as a gift and companion for MacGregor. Both Dogs would wait downstairs for Karen and follow her to bed before jumping up on the bed and sleeping between Karen and myself. It is now 2012, and both dogs still wait downstairs every night for Karen. Once in awhile, they will come upstairs to see if she is there, then go back down to wait for her. I wish I had taken them to the Hospital for them to say "good-bye". :)
Both dogs continued waiting for Karen's arrival up until their deaths, 11 years later.
Karen would be proud of both Dogs. Especially MacGregor. She has appeared in countless "Wizard of Oz" stage performances. Something Karen always wanted to do with MacGregor.
Common symptoms of Ovarian Cancer
- Pelvic or abdominal pain
- Difficulty eating
- Feeling full quickly
- An urgency or frequency in urinary symptoms
NOTE: Pap smears do NOT detect Ovarian Cancer
- Rolls and Objectives
- Attitude and Team Work is Everything
- Examples of Rules
- Examples of Decisions We Had to Make
- Accounts and Important Information
- How the cancer was found
- Prior Health about Karen
- Surgical Pathology Report
- Chemos Used
- Food, Drink and Dietary Supplements
- Other excellent resources
- September 2009
- October 2009
- November 2009
- December 2009
- January 2010
- February 2010
- March 2010
- April 2010
- May 2010
How you can help out
- Why not donate your unused computer time to World Community Grid and the Help Conquer Cancer. This project is used to help scientists better understand and treat cancer through the discovery of proteins involved in cancer, and their function.
- Please consider donations to either
- Ovarian Cancer Research Fund https://ocrahope.org
- Michigan Ovarian Cancer https://www.mioca.org/
- Ovarian Cancer Awareness USPS Postage Stamp
- I wanted to draw your attention to this important petition. There is no costs to sign. However, you will be asked to donate to the iPetitions fund, but can opt-out.
- Sign Petition
Rolls and Objectives:
Patient: Focus on getting well. Mentally and physically.
Patient Advocate: A patient advocate acts as a liaison between the patient and Health Care Provider (insurance, Doctors, Nurses, etc.) to help improve or maintain a high quality of health. You are the voice of the patient.
Nurses: Work with the patience advocate to ensure the patiences comfort.
Doctors: Develop and present to patient and the patient advocate the road map to good health.
Most doctors develop this road map working and consulting with other doctors. Do not be afraid to ask if his/her decision was base on a group effort.
Social Worker: The Social Worker works for the hospital and to ensure the hospital and insurance rules are followed.
Attitude and Team Work is Everything
Always, always have a positive attitude. Hope for the best, prepare for the worst.
Do not worry about the outcome.
Select ONE doctor to be the captain. Select the doctor YOU think is the best. Inform the entire hospital staff (doctors, nurses, etc.) of this decision. There can be a lot of politics. Do not let the politics impact the well being of the patient.
Focus on what you and the doctors have control over. Do NOT waste time focusing on things you have no control over.
Listen carefully to the doctors, nurses and other hospital staff members.
If you do not fully understand their comments or position, do NOT be afraid to ask them to re-state their comments or position. Even if is takes several requests.
Take good notes on everything, from heart beats per minute to timing and type of medications. There are some excellent smart phone and tablet applications out there for this type of tracking.
Examples of Rules
After 5 hospital days, some insurances and hospitals force the patient out to a re-hap facilities. Insurance companies and hospitals will NOT provide you information unless you specifically ask for the information.
Make sure you and at least 5 other people have permissions and access to the patient's medical records. You will need this to make decisions.
Examples of Decisions We Had to Make
Ask about the pros and cons of the different decisions.
Ask "what would you do if this was you or one of your family members?"
As the Patient Advocate, you must try to prevent other medical complications from interfering with the main problem. For example, if the patient is in the hospital bed for more than 3 days, the patient's body must be massage 2-3 times a day to prevent bed sores. Most hospitals are not setup for this. Therefore, the Patient Advocate must do it. It's a lot of work, but the patient will like it.
Do NOT be afraid to challenge and work with the Social Worker for the well being of the patient. In our case, the Social Worker moved Karen to a facility that could not accommodate her. After 4 days, she was placed back into the hospital. I should have prevented the Social Worker from moving Karen from the hospital. The second time around, Karen wanted to stay in the hospital. So, when the Social Worker wanted to move Karen back to re-hab, I stopped it. I did the re-hab myself.
Accounts and Important Information
This is tough to do, but needs to be done to protect the patient's assets. Find out where all the patient's important information is. Anything that has the patient's name on it should have someone else's name as well.
Bank accounts (joints and non-joints)
Accounts the patient may have with her family members. (e.g. father, brother, etc.)
Retirement accounts (joints and non-joints)
Deeds to properties
Any Storage Units
Memorial Service request, if any.
Carcinosarcoma Ovarian Cancer - Stage III C
How the cancer was found
2009 - Around Labor Day, Karen was not feeling good and a week later (Sept. 18th) she went to our family doctor (Dr. Peters). The Doctor told her she was having gas problems and to come back in a week. Sept. 25th Karen went back to the doctors office, looking about 6-7 months pregnant. A Pap Smear (papanicolaou) was done with negative results. Doctor once again stated it was gas and to come back in two weeks.
Over the weekend(Sept 26,27), Karen and I did some searches over the web (Yes!! Google ) and decided to go back to the doctors on Monday Sept. 28 and ask the doctor to perform tests.
Monday Sept. 28 Karen went back to Dr. Peters insisting that her blotting "was not normal" and requested other tests be done. Reluctantly, Dr. Peters offered a cat scan. On that same day at 7pm, Karen had her cat scan. Since Dr. Peters believed it was still gas, he only authorized a cat scan from the breast to the top of the pelvis. Luckily, the radiologist spotted the top of an unusual object. The radiologist suggested to Dr. Peters that a second cat scan be done below the pelvis. A second scan was done, however, only a front view and not sectional view. Therefore, we did not know how large the largest tumor was until the operation was done. Four tumors were found. The largest was about 6 inches in diameter.
Wednesday, October 7, Karen had surgery. One day before her 53rd birthday. On Oct. 8th, Karen received a birthday card from the hospital. I told Karen that is probably the most expensive birthday card she will ever receive. Our surgeon (Dr. Hicks) was great. Besides the tumors, Dr. Hicks took out 9 liters of fluid and 12 inches of the Colon.
On Oct. 30, Karen had a "port" place in her and we started chemotherapy Nov. 9. The chemo is 8 hours a day, 5 days in a row per month. At the end of three and six months they will determine if the chemotherapy is working. From Dr. Hicks past experience using these drugs with this type of cancer is stated as either the body response good or not good. There is no in-between.
Lesson learn - Doctors are not always right nor do they always listen. Like any other professional group of people, there are some good ones and some not so good ones. Doctors are the same way. Make sure that if you ever feel blotted and you are not passing gas, get a check up for ovarian cancer. A simple x-ray in the pelvis area should show something.
Information about Karen
- Excellent - Prior to this, patient never had any health issues
- Allergies - None
- Medication - None
- Age - 53 years - at time cancer was discovered.
- Height - 5' 7"
- Weight - 145 pounds
- Four (4) Pregnancies - 3 natural, one miscarriage
Surgical Pathology Report
- Diagnosis /History
- Pelvic mass
- Total abdominal hysterectomy, bilateral salpingo-oophorectomy, staging
- Specimen(s) Received
- A. Right ovary
- B. Omentum
- C. Right pelvic lymph node
- D. Uterus, cervix, bilateral tubes, left ovary and recto sigmoid colon with tumor
- E. proximal and distal donuts
Immunohistochemical stains were preformed. The poorly differentiated neoplasm has areas that are pan-keratin positive. In aliition, there is sarcomatous area that are CD10 positive, thus indicating an endometrial stromal component to the sarcomatous.
- Final Pathologic Diagnosis
- A. Carcinosarcoma (malignant mixed mullerian tumor).
- B. Metastatic carcinosarcoma, omentum
- C. Right pelvic lymph nodes (2), negative for metastatic carcincoma
- D. Uterus, bilateral fallopian tubes, and left ovary;
- Metastatic carcinosarcoma involving uterine serosa and surface of left ovary, Endometrial polyp.
- Rectosigmoid colon with metastatic carcinosarcoma involving serosal surface.
- E. Adhesions, full thickness colonic tissues.
- Comment: Tumor stage is pT3c pN0 pMx, Stage grouping is IIIC.
- 10/12/2009 - 12:04 Gross Description:
- A. Container labeled right ovary. The specimen is a 490 gram granular, hemorrhagic ovary, measuring 13x11x9 cm. sectioning reveals gray-tan, glistening, soft tissue with scattered hemorrhagic areas present. Representative sections are submitted for frozen section and placed in block FS1 and FS2. Remaining representative sections are submitted in cassettes 3-8.
- B. Labeled omentum, and is congested omental-like adipose tissue, 60cm long, varying from 10 to 4 cm wide, and up to 1 cm thick. The surface is covered with some fibrous adhesions. Within the omentum is a single gray-white nodule, 2 cm. Representative sections in five cassettes.
- C. Labeled right pelvic lymph node. The specimen is adipose tissue, 4 x2 x 0.3 cm containing three nodules or nodes, 0.5, 1.4 and 1.3 cm, respectively. All in one cassette.
- D. Labeled rectosigmoid colon with tumor, uterus, bilateral tubes, left ovary, cervix. The specimen is uterus, attached left tube and ovary, detached right tube, adherent segment of colon and separate fragments of soft tissue and tumor. The uterus is 121 grams, is 9 cm from fundus to ectocervical surface. The corpus is symmetrical, 6.5 x 5 x3.8 cm, covered with mostly smooth serosa, roughened by some nodules near the uterine neck. The cylindrical cervix is 3 cm long and 3.8 cm across the vaginal surface. The ectocervix white and smooth and surrounds a slit-like external cervical os, 1.5 cm long. The cervical canal is patent and has a trabeculated lining. The uterine cavity is triangular and lined by thin, tan endometrium, 0.1 cm thick. There is a plaque-like endometrial polyp that measures 1 cm. The myometrium is pink-tan, soft, 1.5 cm thick. The right fallopian tube is 4 cm long, 0.5 cm in diameter. The serosa is roughened with fibrous adhesions. The fimbria is not recognized. Attached to the fallopian tube is membranous tissue covered with gray-white tumor tissue.
- The left fallopian tube is 7 cm long, 0.5 cm in diameter. The serosa is smooth. The fimbria is unremarkable. The attached left ovary is 4.3 x2 x1.3 cm and has a surface roughened with some fibrous adhesions. The attached colon is 14 cm long, 5.5 cm in circumference. The mucosa is grossly unremarkable. The serosal surface of the bowel is congested and covered with some hemorrhagic adhesions and gray-white tumor tissue. Separate fragments of gray-white, necrotic tumor tissue is received, 9 x 7 x 2 cm.
- Representative sections in 17 cassettes as follows:
- 1-2: cervix
- 3: uterine serosal adhesions
- 4-6: endometrium
- 7-8: right fallopian tube and attached membranous and tumor tissue
- 9: left fallopian tube
- 10-11: left ovary
- 12-13: margins of colon
- 14-15: colon, serosal adhesions and attached tumor
- 16-17: separately submitted tumor
- E. Labeled proximal and distal donuts. The specimen is two complete rings of bowel, 2 cm in circumference and 3 cm in circumference, each containing metal staples. The mucosa of each is grossly unremarkable. A section of each in two cassettes. LW
Frozen section diagnosis:
- Poorly differentiated carcinoma with sarcomatous elements. /GB
- A. The sections are of a malignant mixed mullerian tumor (carcinosarcoma). There is extensive necrosis. The majority of the neoplasm is composed of undifferentiated epithelial cells with minimal glandular differentiation. There are areas of malignant cartilage differentiation.
- B. Omentum contains similar tumor as that described in part A.
- C. There are two lymph nodes and neither contain metastatic tumor.
- D. The cervix is unremarkable. Both fallopian tubes are unremarkable. There is an endometrial polyp present. There is a tumor similar to that described above on the uterine serosa and on the surface of the left ovary. Similar tumor is on the serosa of the colon.
- E. There are adhesions on the serosal surface of otherwise unremarkable full thickness colonic tissues.
- Cancer Antigen (CA125) Normal Range 0-35
- More information about ca125
- 28 October 2009 - 37.3
- 02 December 2009 - 70.0
- 30 December 2009 - 37.3
- 27 January 2010 - 47.9
- 23 February 2010 - 20.4 This is good
- 24 March 2010 - 117.0
- Paracentesis (Body fluids with cancer)
- 07 October 2009 - 9.0 liters
- 08 December 2009 - 6.0 liters
- 22 December 2009 - 5.0 liters
- 31 December 2009 - 7.2 liters
- 07 January 2010 - 10.0 liters
- 14 January 2010 - 8.0 liters
- 21 January 2010 - 4.0 liters
- 03 February 2010 - 5.5 liters
- 11 February 2010 - 8.0 liters
- 18 February 2010 - 6.3 liters
- 25 February 2010 - 6.3 liters
- 03 March 2010 - 7.0 liters
- 11 March 2010 - 8.0 liters
- 16 March 2010 - 3.0 liters
- 23 March 2010 - 2.0 liters
- 28 March 2010 - 3.8 liters
- 01 April 2010 - Could not remove any fluids. Reason: To many small pockets of fluids
- 05 April 2010 - 2.0 liters
- 21 April 2010 - 2.2 liters +aliitional draining during the evening.
- Blood Transfusion
- 08 October 2010 - 2 units
- 11 March 2010 - 2 units
- 25 March 2010 - 2 units
- 02 April 2010 - 2 units
- 07 April 2010 - 2 units
- Hemoglobin Normal Range 11.9-15.9 g/ul
- 09 March 2010 - 7.4
- 24 March 2010 - 9.7
- 25 March 2010 - 8.3
- 02 April 2010 - 8.4
- 07 April 2010 - 7.4
Ovarian Cancer Chemo Used
First set of chemo
- Date: November - December 2009
- Chemo: Brand name Platinol (Generic Cisplatin) used with Brand name Ifex (generic Ifosfamide)
- Comments: After first treatment there were no fluids. However, after second treatment fluids started to build up. CA125 did not go down. Cancer mutated
- Results: Did not work for Karen
Second set of chemo
- Date: January, February, March
- Chemo: Brand name Paraplatin (Generic Carboplatin) used with Brand name Taxol (Generic Paclitaxel)
- Comments: After first chemo there were no fluids. However, after second treatment fluids started to build up. CA125 went down.
- Results: Seems to be helping cure one of the two cancers. Need to confirm.
- Date: April 21 19:30 hours, March 29, 21:00 hours
- Mixture: 100ml .9% Sodium Chloride with 1125mg Bevacizumab at 200ml/hour
- Medication: Bevacizumab
- More information - Doctor's Guide, National Cancer Institute
Foods and Drinks
Foods eating with high protein and Electrolyte drinks
- Good resource
- banana - good source of potassium
- avocado - good source of magnesium
- dried cranberries
- Instant Breakfast Essentials
- Vitamin water
- Metagenisc Adrenogen
- 1 tablet three (3) times a day
- Metagenisc Andrographics Plus - Herbal Immune Support
- 2 tablets every 2 hours for 12 hours w/unchilled water. Then take one (1) tablet three (3) times a day between meals for five (5) days
- Metagenics Vessel Care
- One (1) tablet daily or as directed
- Metagenics Multigenics
- Six (6) tablets daily with meals or as directed
- Metagenics Multigenics Intensive Care
- 2-3 tablets twice a day
- Metagenics D3 5000
- One (1) tablet daily
- Metagenics Celapro
- One (1) tablet daily
- Metagenics Kaprex AI
- One (1) tablet three (3) daily with food
- Metagenics NanoCell-Q
- One (1) teaspoon (5.1 ml) alone or added to a cup of beverage
The incidence of ovarian cancer rises with age. Half of all cases are detected in women older than 65, and most are diagnosed after age 60. The American Cancer Society recommends annual pelvic exams for all women over age 40 to increase the chances of early detection.
Women with a family history of ovarian cancer face an increased risk. Having one close relative with the disease increases the risk threefold, and the more relatives with the disease, the greater the risk.
Part of the increased familial risk can be explained by genetic mutations in the BRCA1 and BRCA2 genes, which normally help protect against both breast and ovarian cancer. Women who inherit mutations in BRCA1 have a 50 percent risk of developing the disease, while a mutation in the BRCA2 genes results in a 20 percent risk. A mutation in another gene that normally protects against a type of colon cancer called hereditary nonpolyposis colon cancer also raises the risk of ovarian cancer, but to a lesser degree than mutations in BRCA1 and BRCA2.
Families that carry mutations in these genes can come from any background, but a National Cancer Institute study found that the mutations are highest among Asheknazi Jews (whose ancestors came from Eastern and Central Europe); about 2 percent of all Asheknazi Jews carry mutations in BRCA1 or BRCA2.
Read more about Genetic Testing and Risk Assessment
Other Excellent Resources
- Ovarian Cancer Research Fund
- Links - Thanks to Ralph Nozzi (Friend)
- Articles Regarding Immunocal
- McGill, Dec. 14, 2009 - New protein key for cell proliferation
History of Events
Scales - There are two scales used. One for tiredness and one for pain. Scales are 1-5 with 1 not being tired or no pain and 5 being extremely tired or painfully. The suffix "t" is for tiredness and suffix "p" for pain.
scale 1- Running around like a little id
scale 5 - Tired and thinking like a teenager
Up until after surgery patient was "not in pain" but was discomfort.
- Labor day weekend- Sept. 5, 6, 7
- Sept. 5 - Saturday - not feeling well, pale look, "just not feeling good", slight temperature
I had played my bagpipes at a Saturday morning weliing and heading to my fathers memorial service. As I arrived at the cemetery, the service was finishing up and I saw Karen walking down the hill towards me. She was very pail. I told her she did not look well. She replied back stating she was not feeling good.
- Sept. 6 - 18 Bloated still not feeling right. looked 3 months pregnant
- Sept. 18 - Visited doctor. Showed Dr. Peters the bloating and had Dr. Peters check for urinary infection. Dr. Peters stated it was gas and to come back Sept. 25.
- Sept. 25 - Visited doctor 2nd time. Dr. Peters preformed Pap smear, pelvic exam. Found nothing, patient still bloated. Dr. Peters stated it was gas and to come back in two weeks
- Sept. 26 - Still bloated, now hard and looking about 6-7 months pregnant
- Sept. 28 - Visited Dr. Peters again. Insisted on some other exam method. Dr. Peters approved a cat scan. However, the scan was to be done from the top of the breasts to the top of the pelvis.
- Sept. 28 - 5:00pm Karen was scanned. The first scanned showed the top of a large object. The client called Dr. Peters and asked if the pelvis area could be scanned for more data. The pelvis area was re-scanned, however, only one view (not 3D) meaning the actual size could not be determined.The final scanned showed four tumors
- Sept. 29 - Visited Dr. Hicks for scheduling surgery. Date Oct. 14.
- Oct. 5 - Surgery moved from Oct. 14 to Oct. 7.
Note: From Sept. 29 - Oct. 5 stomach grew by 4 inches.
- Oct. 6 - Took medication to clean out system - Over the counter laxative
- Oct. 7 - Surgery early afternoon. Surgery lasted 3 hours. As Karen woke up I leaned over her and smiled at her. "I got some good news and bad news", I told her. "Good new" you are not in Hell". "Bad news, you are with me." We smiled at each other and gave her a little kiss on the lips. Later that evening Karen has moved to intensive care for one week. Right after surgery, epidural reduced from scale of 10 to 6
- Oct. 8 - ICU eating ice - 2 units of blood to stabilize blood pressure
- Oct. 12 - Started walking while in ICU
- Oct. 10 - Played my bagpipes at a funeral for a young lady (age 35) who had passed away from cancer. A week prior, her husband passed away as well. They had three young children. When I saw Karen this day, I told her how lucky we were that we got to see our children grow up and our children knew us as well.
- Oct. 14 - Moved to standard care floor. Eating ice and drinking fluids
- Oct. 21 - Passed Gas. epidural was to be removed. The Dr. asked if the patient eating. The patient answered "yes", was ready to remove epidural, however, I questioned the Dr. to define "what does eating mean?" Patient had eaten only about 1 spoon of solid food in which case the Dr. left the epidural in place.
- Oct. 23-27 - Unable to hold food down. stopped eating. Started drinking electrolytes
- Oct. 23 - No walking up/down stairs until Nov. 21
- Oct. 23 - Left for home after having successfully urinating.
- Oct. 27 - Started slowly eating foods. Eggs, cheeses, peanuts, drinking electrolytes.
- Oct. 28 - Blood tested for something. Not sure what.
- Oct. 30 - Port in place for chemotherapy - Right-hand side below shoulder blade
- Nov. 1 - Started eating full meals.
- Nov. 9 - 13, 8am-4pm. Chemo is Cisplatin, Ifosfamide, Mesna
- Nov. 09 - Day 1 - OK tired from surgery - walked while taking chemotherapy rate t1
- Nov. 10 - Day 2 - Still OK - walked around while taking chemotherapy rate t1
- Nov. 11 - Day 3 - Still OK rate t2
- Nov. 12 - Day 4 - Started to feel tied. Appetite gone. Cereal morning and 3 eggs for dinner. rate t4
- Nov. 13 - Day 5 starting to feel tired. Appetite gone. Cereal morning and 3 eggs for dinner. rate t4
- Nov. 14-15 Extremely tired. 3 eggs for both morning and dinner. rate t5
- Nov. 16-18 Walking around but tired. rate t4
- Nov. 19-30 Tiredness rates slowly improved to t3 and t2. Has remained at t2
- Nov. 25 - Blood for white cells. - Nothing came back so white cell counts are good. White cells protect against infections.
- Nov. 30 - Starting to lose hair
Medications for Nausea
- Prochlorperazine (Compazine, Stemzine, Buccastem, Stemetil, Phenotil) Every 12 hours.
- zofran ondansetron drug seemed have work the best for this chemo application.
- Note:These drugs are not taken together. Either one drug of the other
- Dec. 1 - Blood CA 125
- Dec. 7 Day 1 - t2 before the chemotherapy started
- Dec. 6-7 -Tired t4
- Dec. 8 Day 2 - Paracentesis (Drain fluid) 6 liters, t2
- Dec. 09 Day 3 - Nothing unusual t2
- Dec. 10 Day 4 - Started to feel tied. t3
- Dec. 11 Day 5 Starting to feel tired. t3
- Dec. 22 - Paracentesis - removed 5 liters of fluid. Hair lost slowed down and the amount of fluid may indicate Chemo may have stopped working
- Dec. 23 - Blood CA 125
- Dec. 25 - Tired t2 - tiredness comes and goes with the type of activity
- Dec. 31 - Due to fluid build up, unable to eat solid foods without vomiting. Decided to go to emergency. Heart rate was 150bpm, blood pressure 125/99. X-ray of lungs and heart area. Lungs looked good, however, fluid (moderate amount) build up around heart.
- Dec. 31 Paracentesis - Doctors removed 7.2 liters
- At this time, we have only filled the prescription but are not taking it. The reason, we believe the less medication you use, the better off you are. The body is a wonderful machine and can learn to correct itself.
- Note:It is not common to have some fluid build-up around the heart while doing chemo.
- Spent night in hospital. Dr. Hicks and his inter stopped by the hospital, on new years eve - unbelievable... nice touch...
- John, Karen and I celebrate New Years together in the hospital with A&W Root beer... only the best
Medication for heart
- The current chemo does not seem to be working. In January, we will try using a different mix of chemo. Taxol and Carboplatin
- Jan. 1 - Still in hospital. Nothing going on.
- Jan. 2 - 11:00am from hospital. Fluid still by heart, no action taken. Not enough fluid to worry about at this time.
- Jan. 3 - Eating small amounts of food. vomited once in the morning
- Jan. 5 - Started new chemo. One 8 hour treatment. Very tired. t4
Different Chemo - 1/2 liter Taxol, 250mg Carboplatin, 50mg Benadryl - Help control nausea
- Jan. 6 - Still tired t4. Not eating solids.
- Jan. 7 - 9:00am Arrive for Paracentesis - 10 liters. Very tired sleeping most of the day and night.
- Jan. 8 - Tired and slightly nausea. Drinking Powerade. Unable to keep a lot down.
- Jan. 9 - Tired and slightly more nausea. Drinking Powerade. Unable to keep a lot down.
- Jan. 10 - Rough day. Extremely weak nausea (current nausea drugs not working). Drinking Powerade. Unable to keep a lot down.
- Jan. 11 - Rough day. Extremely weak nausea (current nausea drugs not working). Drinking Powerade. Unable to keep a lot down.
- Jan. 12 - Request a different nausea drug at 10am. 11am received kytril granisetron The "BIG GUNS"
- Jan. 12 - 1 pm. Drinking Powerade and Boost. Nausea under control. Took Kytril before bed.
- Jan. 13 - No medication today. Eating small amounts of solid food. Continue drinking Powerade and Boost.
- Jan. 14 - 12:30pm Arrived for Paracentesis - Removed 8 liters
- Jan. 14 - Asked for medication that would create an appetite. Marinol Dronabinol
- Jan. 15 - Went out to eat dinner. Only taken Marinol
- Jan. 16 - 2 medications of Marinol. Eating small eggs, drinking Powerade, boost.
- Jan. 18 - CBC Differential and Platelet Count
- Jan. 19 - Not eating many solid foods. Still drinking Powerade, boost and eating peanuts.
- Jan. 20 - No change
- Jan. 21 - 10:30am Arrived for paracentesis - Removed 4 liters.
Good sign that the chemo might be working.
Starting to take Imodium to stop diarrheal since Karen has not eaten a lot of solid foods
Need to start eating solid foods. Bananas, Avocados, crackers.
Trying a new food drink. 16oz of milk, 2 scoops of vanilla ice cream, 8oz Insure, 2 scoops of UltraInflamX PLUS 360, 1 banana, 1/2 avocado. - Taste is good. I might have one myself. :) t4
- Jan. 22 - Created more drinks containing a banana, apple, pear, avocado, ensure, milk, 2 scoops of UltraInflamX PLUS 360. Made about 1/2 gallon
- Jan. 23 - Morning Karen finished 1/2 gallon. Eat hot dog
- Jan. 24 - Eat three eggs, toast, banana, PowerAde and "Tyge" power Drink
Dinner - Eat 1/2 white fish and lasagna, potato, chicken noodle soup
- Jan. 25 and rest of the week. Eat at least one banana and one avocado per day
- Jan. 27 - CBC Differential and Platelet Count, CMP, Magnesium, LDH, CA 125
low sodium and low protein
- Before starting chemo, had Karen drink one 8oz 30g protein drink. During chemo, continue drinking "Tyge's big bang" drink". This drink contained 63g of protein. If the chemo does not kill the cancer, than these drinks will. :)
- Feb. 2 - Chemo. First time use of Aloxi to control nausea
- Unbelievable - After chemo and after Karen got home, she ate a 3 egg omelette with cheese and avocado. At night, she took one pill of kytril.
- Feb. 3 - Paracentesis. Removed 5.5 liters.
- Feb. 3 - Before the paracentesis, Karen drank 50g of protein. Came home, eat a bowl of cereal and walked about 1/4 mile. Rested, continue drinking lots of powerade and "Tyge" protein drinks. Dinner ate a salmon burger. So far everything is good. Nausea is under control. Next steps, eat, get fat, exercise and continue being happy.
- Started lifting 10 pound weights while setting down
- Weight - 142 lbs. - reason for recording weight is to see how fast, if any, fluids come back.
- Feb. 5-6 - Looks like fluids are coming back. Weight 150 lbs. About 2 pounds per 1 liter of fluid.
- Feb. 10 - Weight is 159 pounds.
- Feb. 11 - 8am Paracentesis. Removed 8 liters.
- Feb. 10 - Walked for 45 minutes. lifting 3 pound weights with arms. Tired scale t3. Still eating 100+ grams of protein.
- Feb. 11-14 Karen eating very well. Still tired t3
- Feb. 15 - CBC Differential and Platelet Count
- Feb. 15-17 Fluids starting to come back. Karen continues to eat well; However, still tired t3
- Feb. 18 - 9:30am Arrived for paracentesis - Removed 6.3 liters.
- Feb. 23 - CBC Differential and Platelet Count, CMP, Magnesium, LDH, CA 125
- Mar. 2 - Appointment with Dr. Hicks
Good, ca125 count is below 35
Bad, still creating fluids. Usually, fluids disappear before ca125 count goes down
Therefore 1/2 the cancer seems to be under control. As such, we agreed to keep the same chemo for the 3rd time.
Tyge's theory - Drain the fluids before the chemo (less cancer for the chemo do have to fight with), monitor fluids after chemo. If the chemo is working, by Karen's next paracentesis (Mar. 11), she should have 3-4 liters or less of fluids
Mar. 16th paracentesis, 2-3 liters or less
Mar. 23rd paracentesis, 1-2 liters or less
Mar. 30th paracentesis, 0 liter
If there are still fluids by Mar. 31st., then the chemo will need to be changed. To what? is the big question.
- Mar. 2 - Paracentesis removed 7.0 liters
- Mar. 3 - Chemo, Ate very little during chemo
medication Kytril (11pm)
- Mar. 4 - Very tired - medication Kytril(10am/11pm) -
- Mar. 5 - Very tired - medication Kytril(10am/11pm) -
- Mar. 6 - Very tired - medication Kytril(11pm), Switch medication compazine(4pm/10pm)
morning ensure (threw up), rough day. Only able to drink 2 8oz ensures and one milk shake (2 scoops ice cream, ensure, whole milk)
- Mar. 7 - Extremely tried level t1 - Fluids are starting to build up
- Mar. 8 - Extremely tired level t1 - Has not been able to eat solid foods since Thursday/Friday March 4,5 Drinking protein drinks and electrolytes
- Mar. 9 - CBC-D blood - Very low (see Reports below)
- Mar. 11 - Blood transfusion - 2 units
- Mar. 12 - Back to hospital for another possible blood transfusion. Hemoglobin count at 10. No need for aliitional blood transfusion
- Mar. 15 - CBC-D blood (need results)
- Mar. 16 - Paracentesis - removed 2 liters
- Mar. 20 - Diarrhea started. Started taken Imodium A-D
- Mar. 21 - Diarrhea is hard to contain. Still drinking fluids continue taken Imodium A-D.
- Mar. 22 - Extreme diarrhea.
- Mar. 23 - CA125 - 117.0. Stopped by Hicks office. Agreed to have blood tested today vs Mar. 24.
- Mar. 24 - t5. Enter hospital 10:45am
- Very dehydrated. Sodium low, Potassium high. Dr. assistance suggested medication to lower Potassium. Karen and I elected not to take the medication. Reasons: The day before, Karen had a mix drink that contained one large banana and Powerade drink. The medication would cause diarrhea which we just got under control. Bowel movement at 6:30pm. Small but firm. Prior to this, the bowel movements were bright running green indicating possible infection. Potassium count 5.9. I few weeks ago her count was 5.8. All due to bananas. High Potassium may cause heart problems. Normal range 3.5 - 5.3
- Bowel movements semi-firm due to medications. Color is no longer green,but brown
- Mar. 25 - Throughout the night blood tests have shown the Sodium going up and Potassium going down to 4.4. Waiting for results of cat scan. 4x500mls 3% sodium chloride at 125ml/hr and 1x500ml .9%sodium chloride before cat scan. Cat scan completed 11pm-12am
- Blood pressure 85/38 Heart Rate 125 ppm
- Mar. 26 - Medications: 1000ml and 250ml .9% Sodium Chloride. Antibiotics Cefazolin Sodium Dextrose 5% in water. Two units of blood.
- Mar. 27 - Fluids via IV's (intravenous medication) and drinking powerade and 42g protein drinks.
- Mar. 28 - Paracentesis removed 3.8 liters.
- Mar. 28 - Cat scan results. There is pressure in kidney (possible blockage), spot on the lung and tumors on liver. Dr. Hicks just we try Bevacizumab treatment.
- Mar. 29 - No change - everything "normal" under these conditions. Both kidneys working excellent - on action. Kidney and lungs conditions could be due to infection.
- Mar. 30 - One bowel movement running a very green. Could be the last of the infection. Same medications as Mar. 25.
- Started new Chemo at 9:00pm Bevacizmab (see "Chemos used" below)
- Links about Bevacizmab
- Mar. 31 - Extremely tired. Sleeping very well. Everything on track. Receiving same type of fluids as the day before. Waiting 3 or more days before checking CA125 counts. Ate solid foods for the first time since Saturday. One cup of fruit and yogurt. Since Karen is very weak, I feed her, exercise her muscles, and full body message daily. This should help her recover faster. As one of my friends pointed out this should prevent atrophy
- Apr. 1 - Extremely tired. Average heart beat 130. Blood pressure low (85/38). Mucus attack. I had feed Karen four 8oz Ensures during the day. At 9:30pm Karen started coughing uncontrollably. To weak to cough up the mucus. Heart rate race up to 150ppm and blood pressure dropped. Took 4 hours to stabilize Karen by giving her Oxygen with nebulizer.
- Apr. 2 - Low blood count. Start another 2 units of blood transfusion
- Apr. 2 - Tried to removed fluids, however, there were to many pockets of small fluids and therefore could not do a paracentesis. Will try Monday April 5. Between now and April 5, will work with Karen to setup and move around and to see if gravity and medications can help create large pockets of fluids for draining.
- Apr. 5 - Paracentesis 2 liters
- Apr. 5 - Cat Scan
- Apr. 6 - Plan (on Apr. 7) drain fluids on both lungs and test for cancer cells. (Thoracostomy)
- Could not drain fluids from lungs due to lack of amount and the proximity to lung
- Apr. 7 - Low Hemoglobin. Blood Transfusion 2 liters. Blood pressure 112/65 Heart rate 125ppm
- Apr. 8 - For 5 hours, every hour on the hour, had Karen setup on the side of the bed for 15 mins and do breathing exercise.
- Concern - Due to Karen's weakness, swallowing some foods is extremely hard (e.g. fish, bread, fries, etc.)
- Karen can not eat dairy products due to mucus build up. Things to think about. The rehabilitation facility does not have immediate access to certain medications. We need to develop food for Karen that is high in protein and electrolytes.
- Apr. 9 - Tried level 3 - All intravenous (IV) and medications completed and removed in morning. Moved to Oakwood Rehabilitation and Skilled Nursing Center at 4:30pm.
- If I had to do this over again, I would have had Karen stay at the main hospital over the weekend so she could received the proper foods. Still having Karen doing breathing exercises.
- Apr. 10-11 My concerns have become a reality. Oakwood Rehabilitation and Skilled Nursing Center (ORSNC) is unable to provide food that Karen is able to eat (pureed meals). Therefore, Karen has not eaten well these past two days. I have asked for fresh fruits and smoothies; However, until a nutrition specialist meets us, these foods can not be provided to Karen. Go figure, Sunday Morning for Breakfast they offer Karen biscuits and gravy. Met Physical Therapists Saturday. Have yet to meet Dr. Belal F. Abdallah. First impression - not a great facility for our needs, but Karen will get through it.
- Apr. 12 - Today was much better than over the weekend. Met with two different therapists (one for lower body and one for upper body). Met the Geriatric Nurse Practitioner. Only medication being used is sleeping pill and blood thinner. Only sore is the on the right calf. Exercises - Today Karen did two sets (20 rotations forward and backward) of arm bike. Three pound weight box reached forward and backward than left to right. This is for the back muscles. Next Karen did leg exercises. Leg lifts, ball between knees and leg extension. Was able to get food ground up so Karen can eat solids. Throat muscles very weak.
- Apr. 14 - 13 Sweating uncontrollably. Due to lack of strength in Karen's throat muscles, she is only able to eat ground up foods at this point. Also very little fat and muscles on her back, so laying down on her back bones (spinal) is starting to hurt. For the first time ever, Karen has asked for a pain killer. I rotate her about every two hours. At night, I place pillows under her entire body to help reduce the amount of pain.
- Apr. 15 - Blood test - Tests showed white cells count extremely high. Possible infection. Karen taken back to hospital to emergency room 4:30pm.
- Apr. 16 - Karen given fluids and antibiotics
- Apr. 17 - Continue fluids, antibiotics. I continue to work with Karen with her eating and exercising. Lesson learned - Had I not been with Karen during the day/night she would not have been exercising or eating. There is not enough help available. E.g. to eat a bowl of oatmeal takes about 1.5 hours. Also, she needs encouragement to exercise and eat.
- Apr. 18 - The infection is from pneumonia
- Apr. 19 - Chemo#2 moved to April 21
- Apr. 20 - Continue fluids, antibiotics, eating, exercising. A week ago, Karen could only left her hand 6-8 inches of the bed. Today, above her head. We exercise every 2-3 hours from 9am to 9pm. Objective - Get her strong so she can stand, sit and walk. Exercises are for fingers, arms, toes, legs and lungs.
- Apr. 21 - Waiting for bowel movement. Last bowel movement was Sunday. Continue eating pureed meals (meals ground up to help swallowing).
- Apr. 21 - 13:00 hours - Paracentesis removed 2.2 liters. Weight before paracentesis 198lb, weight after 196lb. During the evening, fluids continue to drain. By at 10pm an aliitional one (1) liter had drained. Hopefully by morning 90% of the fluids will have drained.
- Apr. 21 19:30 hours - Chemo#2
- Apr. 21 - Showed Karen a bill from a self storage unit that I did not know existed. She smiled. What else has she done that I do not know about? :)
- Apr. 22 - Karen doing good. Paracentesis still draining. Let's hope this chemo works.
- Apr. 23 - Ultra sound on the heart. Karen may be fighting another infection.
- Apr. 24- Karen's breathing hard. Not eating and has pain in her lower stomach. Seems to be in pain while having her legs massaged.
- Apr. 25 - Morning Karen not doing go. Infection and cancer has spread. The chemo seems not to have worked. She fought a good battle. The doctors and nurses have done a great job. Karen is approaching a new life. We're No 'Awa' Tae Bide Awa'. - We are not away to stay away.
During the 6 months, I would ask Karen "did I say I love you" and every time she would nod her head no. I would than say "I love you" and give her a kiss on the lips. Sometimes I would do this every 15 mins. Today, people did not think Karen was responding so to show they were wrong, I would say "did I say I love you", Karen was to weak to nod so I would put my lips against hers and she would slow pucker up and we would kiss.
- Apr. 25-26 - John Berger (friend for 30 years), Gary Leemaster (from California using SMS) and I stayed with Karen through the entire night.
- At 6:00am Dr. Peter enters the room and then states "Karen can you hear me?" Karen can not response because she is weak. Dr. Peters gestures to me to come out in the hallway. I leaned over to Karen and said "Did I say I love you today?", put my lips on hers, she pucker up and we kiss. I told her I would be right back. I agreed to have hospice care. At 10am John and I decided to thank the people who had helped us. When we got back at 10:10am, Karen had taken her last breath. My brother Dean, son William (age 20), daughter Emily (age 23) and Maura (age 17) had all arrived at about 10:15am. Emily and Maura gave their mother a final kiss. It was interesting on what William did. Instead of a kiss William left the room. When I asked William if he wanted to see his mother he stated "That's is not my mother, it's just the shell. Her spirit has left the shell." Karen has stated a new and wonderful journey.
- City of Dearborn tickets one of my vehicles because it is parked in the street on a service day. Called the City of Dearborn to ask for a waiver. They request that I put in writing the circumstances.
- Apr. 26 - Went to funeral home to make arrangements. Requested 15 death notices. Things needed: Karen's Social Security Number. Her "real" name. I say this because Karen used both Karen Cawthon and Karen Leemaster Cawthon on records.
- Apr. 27 - Dean and I write the letter to have the ticket dismiss. I had to actually go to court and explain the circumstances. Here is the copy of the ticket and letter.
- Apr. 28 - 30 Continue to make arrangements and contacting Karen's relatives.
Ticket from City of Dearborn while vehicle was parked in front of my house. Reason - Abandoned Vehicle. Go Figure. Only in Dearborn Day Karen passed away
- May 1 Continue to make arrangements and contacting Karen's relatives.
- May 3 - Called Social Security about Karen. Meet with Banks to add names to accounts to protect assets for my children.
- May 4 - Started putting the final touches together on Karen's service.
- Once my family and guest formed a circle outside the church, we played Amazing Grace and Scotland the Brave.
- Insert speeches later - Emily, Marty, John, Maura and Leanne, Tyge
Saturday May 15 - 2:00pm - Karen's service.
Good Shepherd United Methodist Church
1570 Mason Street
Dearborn, MI 48124
Donations either a charity of your choice or Ovarian Cancer Research Fund http://www.ocrf.org/ instead of flowers.
Memorial Service Program
Dance of Life - Highland Dancers (Strathspey, Highland Reel)
Recessional Music - Turn! Turn! Turn! (to Everything There is a Season) - Pete Seeger