My Journal (cont.)
Chemo is done! Had my chemo port removed and all went well. Glad to see 2011 in my rearview mirror.
Last night, my pastor and about ten other wonderful prayer warriors came and prayed for my recovery and strength through this trial (James 5:14-16) and I was so comforted by it all as well as my husband, Scott.
I'm scheduled to start the chemo on Wednesday, 14th. Chemo will be less toxic as I am not having Taxol...should not lose my hair this time! Also, rather than four hours once a month, chemo will be administered once a week for only 30 minutes. Not sure yet how many I will have to have.
Just got bad results from a Pet/CT scan taken on August 8th and it's unanimous! My GYN, Oncologist, and gastroenterologist ALL agree . . . I should have chemo . . . right away!
It's been over three months since my surgery and except for one two week span, I have thrown up at least once a week. My weight is now 112 pounds (Don't recommend this for a diet plan).
Useful Information: Not told that anytime you do abdominal surgery with pain medication, your intestines/bowels will constrict! I was not advised to stay on liquids only for seven to ten days. I'm doing much better now and after three weeks I'm holding solid food down.
Rushed back to the hospital! Blockage remained. Stayed another 4 days.
One week after surgery went to get my clamps removed. Problem: threw up in doctor's office. Knew that I was approaching dehydration, so I was rushed to back to the hospital where they found that I had a small bowel obstruction due to the pain medication that I was taking. Receiving my pain and nausea meds through the IV -- much easier!
Thanks for the many prayers -- the surgery went great. The mass was free floating and easily removed! One VERY interesting point... remember the small mass back in 2009 that I was SO close to during a robotic surgery?? While doing this surgery -- found out it was only scar tissue!! Can you imagine...I almost put in a chemo port, almost ruined my immune system (again) with chemo, AND had surgery for nothing! I am so thankful for that "click" in my spirit from THE Spirit to wait!
Things are moving quickly. Saw my surgeon today and surgery is scheduled for next week! Special friend is setting up a top team for the O.R.; and I've already had an EKG, blood work, and ultrasound in preparation for surgery. Tomorrow, a chest x-ray and I'll be ready to go!
WOW! It's been over a year since my last entry, but a lot has transpired. Had a Pet/CT Scan on the 17th and the news is not good. I now have a 4.2 cm (approx. 2 inches) mass in between my stomach and pancreas...SUV has gone up to 7.5...and I've got an appointment with my surgeon on March 9th to schedule my fifth debulking surgery.
Great News! Pet Scan revealed that the mass has decreased in size . . . PLUS the SUV is still going down! It was 7.9 in September and now it's 5.1!! I've decided that I'm not having another Scan until 2011. I'm going to give my body a rest from all the radiation and continue to put my trust in Jehovah-rapha and the prayers of many for my healing. Thanks to all!
WHOA! I'm not doing chemo! Everything was moving SO fast . . . get the port surgery set up . . . plan on starting chemo at the beginning of November . . . yet I had NO peace about the decision. Therefore, I stepped back, prayed, and had many prayer warriors also praying for wisdom in my decision. It suddenly became crystal clear!
WAIT! I'm going to wait for three months, have another CT (or Pet) Scan, and we'll see whether or not it's growing. Another reason to wait is the SUV (standardized uptake value) which determines the metabolic activity was 10 and now is 7.9! The tumor is dying!!
Here we go again! Scheduled to have the chemo port put in AGAIN this coming Friday and will begin yet another six months of Chemo starting the first week of November. In three months, I'll have a CT Scan to see if the mass has decreased in size. IF after three months it has not, I'll have the robotic surgery to remove it.
Spoke too soon! A new lump has emerged...this makes No. 5! It's in a BAD location. It's at the base of my right rib between the lung and diaphragm; therefore, every time I breath the very tender skin of the lung hits the lump. Result: not sleeping well AT ALL.
I'm checking out a new surgical procedure called "DaVinci Robot." It will entail a smaller incision thus quicker healing time.
Over a year since last surgery and I've had my fifth CT Scan this month. All is stable! Oncologist said one of the small lumps has decreased!
I've also had the opportunity twice (with two other survivors of ovarian cancer) to speak to nursing students at hospitals and universities. Ovarian cancer is hard to detect as pains come in many different forms.
It's been almost four weeks since the surgery. I'm back teaching Precepts. I've also seen my Oncologist who suggested chemo, but I declined due to the fact that it was only one small tumor. If the cancer is to return, it would occur within a year; therefore, I'll be having CT scans every three months for the next year.
Once again...I LIVE TO TELL WHAT THE LORD HAS DONE!
On the 14th, I underwent a fourth surgery to remove yet another tumor. I was in and out of the hospital in only 2 days!! Today, I had staples removed from my 7 inch long incision, and each day is better than the one before.
Many, many thanks to all who interceded to the Lord on my behalf.
James 5:13-16 – Is anyone among you suffering? Then he must pray. Is anyone cheerful? He is to sing praises. Is anyone among you sick? Then he must call for the elders of the church and they are to pray over him, anointing him with oil in the name of the Lord; and the prayer offered in faith will restore the one who is sick, and the Lord will raise him up...pray for one another so that you may be healed. The effective prayer of a righteous man can accomplish much.
Psalm 103:2-3 – Bless the LORD, O my soul, and forget none of His benefits; Who pardons all your iniquities, Who heals all your diseases.
Pet Scan revealed that one of the spots was "hot" indicating that it is in fact malignant; therefore, I have been scheduled for a debulking surgery to remove the lump (about the size of a lima bean) in the middle of March. The other spot was blocked by something but I'm sure it will be taken care of during the surgery also.
Yearly CT scan in December revealed two more new, yet very small, spots.
Yearly CT scans and all is well!! No evidence of metastatic disease! Health is excellent by the grace of God.
Great news! It's been two years since my last Pet Scan and this week I had another one! All is well...praise the Lord...AGAIN!! No evidence of metastatic disease!
Also, after two years, my hair is completely back! I had the whole tamale done on my REAL hair...color, cut, and highlights. It's still a lot more work than my wig, but it's great to have it back!
I'm back! Over the last six months, I've had another CT Scan, a bone scan, AND I've had my chemo port REMOVED!! There have not been any new growths! Praise the Lord!!
I have about 3 inches of hair (if you want to call it that!). It's not a pretty picture! I'm still wearing wigs...on purpose! The chemo stripped my hair of color as well as control. It reminds me of an SOS pad! BUT, the word out there is...it will return to the way it used to be in a year or two (or three)!! We'll see!!
I'm out of the holding pattern! I do NOT have to have any further chemos! Dr. C. feels that my immune system could not take it. After six weeks, my immune count is only up to 1.5 (the average range being 3.7 to 4.9). I will now be on maintenance . . . seeing my doctor every four weeks. Praise the Lord for His healing!
Saw Dr. C again today. Blood work revealed no significant change to immune system; therefore, we are in a holding pattern. We may or may not do the additional three chemos.
The toxicity of the Taxol has caused neuropathy in my toes (numbing - nerve damage). As a result, if an additional three chemos are done, we will be using Taxotere (less toxic than Taxol) and a lower dosage of carboplatinum.
Went to see my doctor today and received some disheartening news. Dr. C wants to do an additional THREE chemos (total of nine). Statistics show that nine tends to hold off reoccurrence of cancer better than six. And I thought I was done! My doctor had actually wanted to tell me this prior to my vacation; but, bless his heart, he wanted me to have a great time.
The only problem that still remains is my immune system which almost four weeks after chemo is still in the tank. This may also be a result of the over-radiation in '73 on an area of the bones that produces most of my white blood cells.
It's been almost a month since my last chemo; and in that time, Scott and I have taken a wonderful trip to Quebec City! It was beautiful, and I walked more in two days than I've walked in two months. I'm still taking the Neupogen shots to help my immune system get back to normal, but it feels so good to be on this side of the chemo!
Useful Information: Three weeks after your final chemo (when your hair falls out for the last time), it was recommended to me to shave my head so that my hair will all grow back uniformly.
6th (LAST) Chemo!! Praise the Lord...IT'S OVER!! No more chemos!!
Today, my immune system, as well as the white and red counts, were all within the boundary rates and I was able to take the chemo. I'll have one more month of numb toes, foggy brain, and hair fallout. By Thanksgiving, I may have some eyelashes back! J
This year I have so much to be thankful for...my Great Physician's care, my supportive husband and family, and the prayers of the saints. I've been truly blessed! Thank you so much!
Once again, I was supposed to have my sixth chemo; but BOTH the white and red blood counts were in the tank. Therefore, I'm now scheduled for Tuesday the 17th.
One note of good news is that the results of my CT scan came back with NO new tumors. This is great news! If there had been new growth, it would have indicated that the chemo was not effective.
Today, I was supposed to have my sixth and (hopefully) final chemo; but after the consultation with my doctor, it was decided that we would wait until the 11th.
I have been having abdominal pain since the last chemo; therefore, I am scheduled to have a lower CT Scan on the 9th to check it out. My prayer is that it's just lesions from the surgery in February.
I have experienced something new since the last chemo...sore feet. I have very little feeling in them, and sometimes it feels like they've fallen asleep...you know how it stings when you try to walk on them?
Also, there's an interesting side effect of chemo lovingly called "chemo brain." I will be in the middle of a sentence and suddenly not be able to remember the correct word I need to use! aarrrgg It's very frustrating, but the good news is that chemo brain goes away once you stop taking chemo! Can't wait!!
I could cut and paste one of my journal entries below for this update! Went in for blood work this morning in preparation for my 6th chemo coming up on Sept 3rd. My immune system was in the tank AGAIN. The range is 3.7 to 4.9 and mine was .45! Not good. Therefore, I was sent home with four more Neupogen shots to hopefully get my immune system up by Tuesday so that I'll be able to have the chemo.
Chemo #5. Today's chemo started at 1 p.m. and I was the last to leave at 6:30 p.m. Scott and I had a very thorough discussion with Dr. C. We were informed that after the 6th chemo, we need to be prepared for a battery of tests (Pet Scan, CT's, etc.). One piece of good news is that the Primary Peritoneal Carcinoma is usually confined to the abdominal area, so we will be keeping a close watch over the organs in that area in upcoming years.
Here's one of those funny stories you never want repeated, but also never want to forget! I went on a two-day trip to San Francisco with Scott; and as I went through security in the airport, I was asked to remove my shoes. All of a sudden, the bells went off, cops came over, and the supervisor started writing down ALL my information! My shoes went positive for metals! I was asked if I was on any medication. Well...where do I start??!!
I explained to him about my chemo and that it might have been the carboplatinum (a heavy metal) that set off the machine. I am probably now on the FBI's most wanted list!! J
Reactions, reactions, reactions! The past two days, I have been dealing with the itchy fingers and feet! This time, however, I had welts and my lips swelled up. After visiting the hospital, I was told to double up on the Benadryl. This week, I will be seeing an Allergist to see if I can get some help with the itching.
4th Chemo. Had my fourth chemo today. I arrived about 8:45 a.m. and was escorted directly into my "bedroom" where they hooked me up to the chemo port and took out some blood. My white count was 2.02 (they will NOT give you chemo if it's lower than 2.0, so once again I was very fortunate). The chemo was given, and I was sent home with six Neupogen shots which I will administer to myself. I'm weak as a puppy and spent most of my day sleeping.
Well...here we go again! My white count was lower today than it has ever been. Therefore, I am back to giving myself Neupogen shots and antibiotics daily, and chemo number four has been rescheduled for next Thursday, July 18. I was also informed by my doctor that I am going to have at least six chemos total which will take me into September.
I go for my fourth chemo this week on Thursday. Over all, I've been doing okay...Only have about ten bad days and the rest of the month I'm back to my ol' self. :-)
The weirdest thing that I experience is itching. If I scratch myself ANYWHERE it begins to itch like a mosquito bite! My feet and hands itch the most. I can usually take a Benadryl (only when I have time to sleep because it knocks me out) and it takes care of this problem temporarily.
I actually had about a half inch of growth on my head this month, but it all of a sudden fell out again. This makes sense because the first time I lost my hair, it occurred about three weeks after my first chemo. The worst part is that I don't have ANY eyelashes!!! My eyes look absolutely naked!!!! I'm getting pretty good at putting on false ones, but what a bother. It is nice, though, not having to shave! There are blessings in everything, I guess.
Well, my "infection fighters" are low again. I am now taking antibiotics and GIVING myself Neupogen shots!! I also cannot eat some of my favorite foods in order to avoid possible bacteria... fresh vegetables, yogurt, or "thin skinned" fruit.
I feel great, but due to the low immune count in my body I am at greater risk of getting sick from others and possible infection.
Useful Information: Prior to receiving chemo, several things are given to help combat the side effects...one is Decadron, a steroid. This week, after getting so sick, I was also given Decadron to take twice a day for three days to combat nausea.
Here's what happened next... I broke out in VERY itchy pimples all over my neck, back, and chest! (Steroids also have other unpleasant side effects such as major water retention and weight gain.)
Useful Information: My dermatologist told me that this type of acne is a common reaction to the steroids and he recommended some over the counter items that you might be interested in getting...Calamine lotion and Aveeno Anti-itch Cream (for itching). He also prescribed some Pledget pads (to help dry up the acne).
I have been so sick. Normally, a couple of days after chemo, I had one hurl and I was ready for the rest of the day. Not this time!
I threw up right before I left for my appointment, again when we walked into the hospital, again we reached the doctor's office, again while waiting for a shot to help the nausea, and again after picking up my prescription for nausea downstairs! Yuck!!
Anyway....here's the news from the Pet Scan.... NOTHING!!! There were NO MORE TUMORS!!!! Praise the Lord!!
Now the question remains, when is enough, enough on the chemo? I am now praying for wisdom on my physician's part and that the appropriate blood work will reveal when the time is right.
What a mighty God we serve! I am forever in His care! Love, Tricia
3rd Chemo. Hooray...my white count was acceptable today and I was able to have my third chemo. My count went from 1700 to 4300 (the acceptable range being 2000). The port worked like a charm and even cut the time down from 5 hours to 4. The session started at 9 a.m. and I woke up at Noon...left at 1 p.m.
Today, I had both a Pet Scan and an Upper CT Scan. A radioisotope was put in my body through an IV and it is like a magnet to cancer (which has a high concentration of sugar). The cancer will show up black on the scan.
3rd Chemo was called off this morning. My white count was too low once again. I'm due to try again on the 17th.
Surgery this morning to install a port in my chest to administer future chemo. It looks like a bottle cap under the skin.
My hair is all gone and I have a new doctor! My new doctor is only 15 minutes away verses the other which was a 40 minute drive in terrible traffic. So for that reason alone, I'm thrilled!
One thing that Dr. C was VERY surprised about was that I was receiving my chemo through veins in my wrist. He said that they always used a port (about the size of a quarter placed in a "dedicated" vein on the upper chest) for safety. He also informed us that placing the chemo in the veins in the wrist could lead to ulcerated veins, and it is true that the first vein used for my chemo still hurts!
I have also had to take 7 shots of Neupogen during the month of May (administered in my home - one a day for a week) to help boost my immune system.
Lamentations 3:22-25 – The LORD'S lovingkindnesses indeed never cease, for His compassions never fail. they are new every morning; great is Your faithfulness. "The LORD is my portion," says my soul, "Therefore I have hope in Him." The LORD is good to those who wait for Him, to the person who seeks Him.
Useful Information: I was told that a moist, hot mat would help for joint pains so I drove around looking for a big one! Thanks to my radiologist friend, I ended up making one. (See Resources for directions to make the mats.)
Suffering from bladder infection and "maybe" a kidney infection as well. My back is on fire. I received antibiotics and something for the pain from my urologist. He also gave me the name of a medical oncologist (Dr. C), who was VERY effective in helping his wife through breast cancer. He called Dr. C while I was in his office, and an appointment has been set up for May 24th.
My chemo was delayed until next Monday, the 13th, due to a low white cell count. I found out that this was common. Once again, if the white count is low, the immune system is hampered; however, if the red count (which carries oxygen throughout the body) is low, my energy level will drop.
Well...something's wrong with my blood count. I was called at 5:00 p.m. today to be told that my chemo would be put off for one week...THAT'S IT. I have NO idea why.
Hallelujah!! The Lord has finally answered the "Why" question for me. The main question that I've had is: Why three different cancers in one body in one lifetime? I'm a healthy woman ... I don't smoke .... I don't eat junk food ... what am I doing wrong?
Today, I had a consultation with the Director of Radiation Oncology. This consultation was to determine whether or not radiation would also be used in conjunction with chemo.
However, after they learned how much I had in 1973, I was informed that I am NOT a candidate. As a matter of fact, the cancers I had been suffering since are most likely caused from the excessive radiation received in 73. This was a relatively new technology back then and as yet people did not know the effects of radiation on the body.
Today when someone gets dysgerminoma (my first cancer), a patient receives only one week of radiation... also, for ANY kind of cancer, they rarely use more than two weeks.
I received 43 treatments of radiation directly on the abdominal area.
There were three criteria used to determine whether or not my cancer may have been related to past radiation, and I met all three: (1) Occurs 20 years after initial cancer, (2) Occurs in the same area, and (3) It is a different kind of cancer.
As a result, when I went in for the "debulking" surgery at the end of February, the cancer was all over the abdominal area. The omentum (which is a fatty layer that lies in between the skin and the organs of the abdominal area) was removed during the surgery due to all the lumps found.
This is possibly the reason that there is NO primary tumor ... it is simply the result of being exposed to too much radiation. It all makes sense now! Primary Peritoneal Carcinoma.
I now see how merciful the Lord has been to me just by all the healing that has occurred over 30 years. He is and will continue to be my Great Physician.
Useful Information: Thanks to a new friend who has already been through chemo, I found out that when you get up in the morning you need to eat something ASAP. It worked! Today, I had some applesauce and did not toss!!!! Yeah!!! We went to a nice place for lunch where you sit outside, and the day was beautiful. We then walked around a couple of stores to get a little exercise. I'm terribly weak! Anyway, it's a day by day thing. Hope it will continue to get a little better each day.
The next day started off the same way...tossed then rested. Now though I'm sore all over...kinda like the flu...especially painful are my legs and ankles.
Useful Information: NEVER told that I would experience constipation! I was miserably constipated for three days! After the fact, I was told "Oh, you might want to take a Ducolax after your chemo" ...thanks!
I had my first chemo last Tuesday. Wednesday was great, I thought - no problem! I'm going to skate right through this! But then came Thursday! Ugh!
I got up, did my hair, got dressed, and right when we were getting ready to walk out of the house, I tossed my cookies with VERY little prior notification! Therefore, I decided it probably would not be a good idea to go out that day.
1st Chemo. Today, I had the first of six chemos. I arrived at 9:30 a.m., but did not start the process until around 11. Fortunately, I had a lovely, quiet, private room (no death by soap operas!!) where I could turn on my computer and listen to classical music.
Once the IV was in, I was given three different products to ensure that I would not have an allergic reaction to the chemo. Then the first chemo was a product called Taxol which took three hours to drip and then Carboplatinum which only took an additional 40 minutes.
I've been told that I will probably have "flu like" symptoms and maybe some nausea, but they gave me some pills for nausea should that occur. Also found out that I will most likely lose my hair by the next appointment on May 5th.
My appointments will be every three weeks, but between now and then I will be going for blood work every Monday. It is very important that my white and red count stay stable. If the white count gets too low, I lose my ability to fight off whatever is flying around in the air...colds, etc. If my red count gets too low, my energy level will drop due to lack of oxygen carried by those cells. Isn't our body fascinating? We have truly been fearfully and wonderfully made!
Today, my pastor and the elders of the church prayed over me after church.
James 5:14-16 – Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer offered in faith will restore the one who is sick, and the Lord will raise him up, and if he has committed sins, they will be forgiven him. Therefore, confess your sins to one another, and pray for one another, so that you may be healed. The effective prayer of a righteous man can accomplish much.
Useful Information: Chemo in Pill Form? Told it would be so corrosive on your GI tract that even the Decadron would not be any help . . . also told less would get to the blood stream from the GI track. Therefore, an IV directly into the blood stream is the best way to go.
The chemo will be Taxol and Carboplatinum. I have to go to the Pharmacy tonight and pick up medication to take the night before. It's called Decadron 4mm (a steroid). I take 5 pills Monday night and 5 pills Tuesday morning. Then I have to report to outpatient for chemo on April 16th at 9:30 a.m.. I will be there until 3 or 4 in the afternoon!!!! Wish I could take the pill form!
Went to see Dr. P (OB-GYN) this morning. I will be starting my chemo next week and it will take place at Jackson Memorial. Dr. P is planning a VERY aggressive course of action. I will be seeing him every three months to check for possible regression of the cancer.
I have been given a 40 to 50% chance for total cure. If the chemo is not effective, they will try other forms of chemo. If those are not effective, the doctor told me I have approximately 1 to 2 years for the cancer to take over other organs. So I have been brought face to face (for the first time) with the fact that this is truly a life or death situation.
All the way home, I had a tape playing over and over in my head: "I've got a 50-50 chance of seeing 50!" How depressing!
BUT...do you want to know how wonderful and awesome a God we serve?
When I got home, I happened to go into one of my rooms where I have a little spiral ring with daily bible scriptures and HERE'S TODAY'S Scripture!!!!
Psalm 118:14-15a, 17...The Lord is my strength and my song; He has become my victory. Songs of joy and victory are sung in the camp of the godly. I WILL NOT DIE, but I WILL LIVE to tell what the LORD has done!!AWESOME!!! It's a sure Word for ME!!