Tuesday, December 23, 2008

What Cancer Cannot Do

My good friend t.j. shared these words with me, but I was also given an afghan early on in my journey by another friend - I keep it on my bed - and of course, share it with my cats who have also been on this journey with me. It is a beautiful afghan and I read the words often. Now, I want to share these words with you so that you can pass them on to others you know who have cancer.

WHAT CANCER CANNOT DO
Cancer is so limited...
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit
-- author unknown

Thank you t.j. I would not have thought of sharing if you had not sent this to me.

Merry Christmas and Happy New Year

Thursday, December 11, 2008

Appointment with Pelvic Surgeon

My follow-up appointment with the surgeon on December 11th was changed to December 10th, however, I still did not see the doctor because he was in surgery and it lasted longer than expected. My appointment is now on January 8th. More later.

Tuesday, December 9, 2008

Appointment with Oncology Radiologist

As promised, I kept my appointment with the radiologist today, December 9th. He was extremely nice and had studied my case and also had talked with my oncologist and pelvic surgeon. From what he said my case is challenging and they are all interested in the outcome. He was well aware of my feelings about radiation therapy and said that he would respect and support my decisions about treatment. After that being said, he still spent an hour with me explaining, in great detail, what the radiation therapy would entail.

In conclusion he really can't say for sure that radiation would make a difference, if it did make a difference it would be about 20%. Endometrial cancer is common but the type of cancer that I have is not common. He explained there are not a lot of studies on "serous papillary" cancer because there are just not a lot of women with this type. They do know that it is an aggressive cancer, but he said that I did well with the chemo and at the present time no cancer is noted in the lymph nodes. I am going to follow this with PET scans and see what happens.

I am feeling pretty good and my mental outlook is great. I am, of course, still having problems with my feet and find walking difficult when I have to put on a full shoe - sandals are more comfortable. If I stand for long periods then my back hurts, but then I have had back problems for a long time. After the first of the year I intend to join the Y and start water walking and water aerobics to see if I can start getting my strength back.

I have an appointment in 2 days with my pelvic surgeon but it is just for a follow-up. He will be following me for an extended period of time. I also have an appointment with my oncologist in January and will follow with a PET scan.

I probably will not be updating my blog except when I have appointments which should start tapering off now. I really would like to enjoy the Holidays and I wish you all a Merry Christmas and Happy New Year.

Wednesday, November 19, 2008

Appointment with General Surgeon

More good news – I met with a surgeon today, November 19th, about the breast biopsy. He said that he was very sure that it was not malignant. He did a breast exam and felt nothing – no lumps – no bumps. He drew me a diagram of what a breast malignancy should look like and then he drew a diagram of my three spots and they looked nothing alike. In fact, he advised against doing the needle biopsy, or surgery, for at least 6 months, preferably 9-12 months out. Because of the blood clots I am on blood thinners. He said that they would have to take me off the blood thinners for at least a week – and wouldn’t it be a shame if I died from a blood clot in my lungs and it was not malignant. He also said that if I were his sister he would advise against doing anything at the present time. He said, “You have been through enough the last four months. Take some time off and enjoy Thanksgiving and the Christmas Holidays, and do something fun for awhile.” I am going to take his advice and not worry about it.

God is good – all the time! He answers prayers!

Tuesday, November 18, 2008

6th & Last Chemo Therapy Treatment

Today, November 18th, I met with my oncologist, however I did not have my chemo treatment. A couple of weeks ago I made a decision, after much prayer, that I was not going to continue treatment. After much discussion about the numbness in my feet and starting in my hands, he was in agreement with me, not to do the last chemo treatment. He does want me to meet with the oncology radiologist and at least hear what he has to say. I agreed that I would keep my appointment on December 9th and I will listen but will make no promises to do radiation – I have always been against radiation.

The good news – the ultrasound on my thyroid showed no nodules and everything looks good.

I have an appointment on Wednesday, November 19th with a surgeon to see what we are going to do about the spots they found on my right breast. I will let him decide if we do the needle biopsies first or go straight for surgery. My choice – surgery. Let’s just get it out. If it is not malignant now it probably will be in the near future. If it is malignant there will be no more chemo so he better get clear margins.

I have heard that cancer cells cannot live in an alkaline body, only in an acid body. I have been reading and researching the diet and it is not going to be easy but I am going to give it a try. It certainly can’t hurt anything.

I am starting to feel really good and I am at peace with the decisions that I have made. I am looking forward to a more normal life for the days that I have left which may be 2 years or 4 years – only God knows. From research most people, with my kind of cancer do not live longer than that (with or without treatment). My surgeon had already told me that my cancer cannot be cured and it will return. My oncologist did not dispute that.

My oncologist will support my decisions and I will meet back with him in January to see how things are going and he will schedule another PET scan at that time.

Wednesday, October 29, 2008

5th Chemo Therapy Treatment

October 29th. They are very concerned about the numbness in my toes and bottom of my feet. It does cause some problems when I am walking. They decided to give me a smaller amount of Taxol today to see if it is stablized or if the numbness gets worse. They are worried because of the chance that this could be permanent nerve damage. If it gets worse they may decide to cancel the last treatment or give me a sister to Taxol instead of Taxol.
I do have some numbness in my fingers and hands, but nothing like my feet - just tingling sensations.

2nd Pet Scan Report

Pet scan on October 21st. Good news/bad news - don't you just hate when someone starts off like that.

Good news - When I started chemo my CA 125 was 154 - it dropped to 17 with my last chemo - they are very pleased with that. The lymph nodes are resolved - no cancer seen. (Serum CA 125 level is a useful indicator of disease response or progression in patients with papillary serous carcinoma of the endometrium.)

Bad news - the breast nodules have brightened. They want the breast biopsy to take place between chemo and radiation to determine if it is inflammatory or malignant.
There is a pulmonary nodule lower left lung - stable. It was there on the last PET scan but he didn't tell me about it so this was new news to me. Suggest a repeat PET of the lungs in 3 months.
Possible node right lobe of the thyroid, etiology undetermined. He has sent in an order for an ultrasound.
Coronary artery atherosclerosis.
And, there is a spot on my left hip.

Looks to me like the bad news out weighs the good news.

Viral Infection

On Thursday morning, October 23rd, I woke about 3:30 am with a sever sore throat to the point that I could hardly swallow. I looked on my list of chemo signs to beware of and the sore throat was listed. I called the chemo dept at 8:40 and they advised seeing my PCP right away and having a CBC drawn to see if I was neurtropenic (low white blood cells) - I was. They did a strep test and it was negative so they decided it was viral and there was nothing they could really do for it since I was not running a fever. They prescribed Rocky Mountain Mouth Wash (for chemo patients) - it didn't help. If I start coughing then come back. And, stay away from sick people.

On Saturday I had to make another trip to to the doctors office - I was coughing. They finally gave me an antibiotic and cough medicine which seemed to help a little but I was still waking up every morning with a severe sore throat. I finally took things into my own hands and started taking my ever faithful Sudafed. It started working.

I looked up sore throats in chemo patients on the internet and got more information than I had ever hoped for. Seems sore throats are common in some chemo patients especially if you are prone to getting sore throats - which I am.

Monday, October 20, 2008

I Peter 4:12-13

Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ's sufferings, that when His glory is revealed, you may also be glad with exceeding joy.

Thank you Sherry!

Sunday, October 19, 2008

4th Chemo Therapy Treatment

October 8th - 4th treatment. I have decided that the pain after chemo was going to continue so I finally asked for pain pills to get me through these 3-4 days. It really did help. During these days I must admit that I stay in bed alot.

The chemo makes me extremely tired and I have little energy. I am managing but have to take lots of rest periods. This is hard for a high energy person and I do get discouraged.

I am scheduled for a PET scan to determine if the chemo is working the way they want it to. If not he wants to stop chemo and start radiation but he is hoping that we can complete the chemo.

3rd Chemo Therapy Treatment

3rd treatment on September 14th, was unevetful but I was anxious to get home. Same side effects with the joints and muscle pain.

A new side effect - my toes and the bottom of my feet have gone numb - and I have severe leg weakness. It can also causes leg cramps which I have not experienced yet. I have read about numbness with chemo - it is nerve damage that may or may not correct itself. It will take up to six months or more after the last chemo treatment. My hands have some numbness but nothing like my feet. The oncologist said that if it interferes with my walking we will have to stop chemo.

Blood Clots

My ankle has been hurting so bad and my lower calf on my left leg. Well it quit hurting and I never thought any more about it. However, on Sunday evening when I was talking to Johanna she noticed that something was wrong and I told her "I was a little short of breath". Never thinking anything of it. Monday evening same thing when I was talking to Betty. I gave her the same answer not thinking anything of it. Tuesday evening after changing the cat boxes and vacuuming I could hardly breath at all. So on Wednesday, September 13th, I called the oncology department to see if it was okay to do chemo on Thursday if I was short of breath. Well, needless to say I got the third degree and finally the nurse said is there someone there with you "no". Then she asked if I had someone who could take me to the hospital, "yes". Then she asked how soon could I get to St Joseph ER - "an hour". She said to get there ASAP. I called Laurie because I knew she didn't have classes on Wednesday afternoon. It was 11:30am and she came immediately. We got to the ER at 12:30 where I got the third degree. Then they finally said they were going to do a CT scan to look for blood clots. Now I am sitting there calm, relaxed, all test results are normal, B/P, temp, oxygen level all normal. I am totally expecting them to say, so is Laurie, that there is nothing wrong. The ER doctor sat down by the bed and said you have pulmonary emboli - "your are shooting blood clots". (A blood clot (thrombus) in the deep venous system of the leg is not dangerous in itself. The situation becomes life-threatening when a piece of the blood clot breaks off (embolus, pleural=emboli), travels downstream through the heart into the pulmonary circulation system, and becomes lodged in the lung.)

I had no chest pain, no cough, nothing that would indicate that something was wrong except for the occasional shortness of breath. Since I live alone the ER doctor wanted to admit me overnight to watch me. They started me on Arixtra immediately. The overnight stay was without event. However, lots of doctors were talking to each other, especially about taking the chemo on Thursday. My oncologist came to the hospital and the decision was mine. He said that chemo and blood clots are two completely separate issues and that it was okay to do the chemo if I was up to it. I was discharged from the hospital and walked over to the Franklin building just in time for my chemo at 11:00 am.

2nd Chemo Therapy Treatment

My second chemo treatment was August 27th. There were a few minor problems getting started. Not sure if it was my attitude or the nurses attitude - a little of both I believe. It was not the best of experiences and it made for a very long day. The chemo takes 6 to 6 1/2 hours to drip and then a 30 minute visit with the oncologist or PA.

Third day after chemo I did have side effects again – joint and muscle pain that is horrific. The oncologist said that approximately 60% of people on this chemo get these particular side effects. At least I have had no nausea or vomiting.

Mammograms

I had additional mammograms on my right breast and an ultrasound on August 26th. The radiologist found 3 very small, close together spots that he wants to remove by needle biopsy. Since I am on chemo I will check with my oncologist - he has decided that he wants to wait on the needle biopsies. He suggested at least until we do the next PET scan after the 4th chemo treatment. I was told that the chemo that I am on (Carbo-Taxol) will not help the breast cancer.

A Week of Sadness

This has been a very sad week. On Monday, August 18th, my aunt Mickie died. I was not able to make the trip to Kansas City because of my weakened immune system. Then on Wednesday, August 20th, I received word that my aunt Mary in California was nearing the end. On Thursday evening I received yet another call with bad news after my aunt Mickie’s wake. My cousin Marty and her husband (from Georgia) were on their way to California to be with her mother when she received a call that one of her sons died suddenly – he was 39. Our whole family is so saddened right now.

No matter how mentally prepared you think you are, when your hair starts falling out (as it did on Thursday morning) it is devastating. I had it cut really short before my surgery because I new that day would come soon and I thought that if it was short it would make it easier – it didn’t! Through the tears I cut it all off last night, the 22nd.

1st Chemo Therapy Treatment

I had my first chemo treatment on August 7th. They take great pains to make sure that you do not get sick or have any immediate side effects. I will have six treatments at three-week intervals and then we will discuss radiation.

The 3rd day after treatment my joints and muscles started hurting so bad that I could not walk and it lasted for approximatley 3-4 days. Since I am less than 3 weeks out of surgery this chemo session was extremely hard on me. I sure hope that the rest of them lighten up.

PET Scan

The PET scan on August 1st showed that there was still cancer in two lymph nodes and that there were spots of cancer on my right breast. Because of the recent surgery and the staples still being in they said that they would not be able to tell much about the abdominal area.

Meet the Oncologist

On July 31st I met with my new oncologist for an hour and then with the PA. He said that there were a couple of options but he preferred the most aggressive since I have an aggressive cancer. Carbo-Taxol was the choice and I will have 6 treatments in 3 week intervals.

It all became overwhelming - so much information. They scheduled me for chemo on August 7th - just 16 days after surgery - but first I had to have a PET scan.

The surgery

On July 22nd, the surgery included a total abdominal hysterectomy and salpingo-oophorectomy with a diagnosis of papillary serous adenocarcinoma, stage 3c, with metastatic carcinoma in 3 of 16 lymph nodes.

It was decided that I was not going to heal from the surgery because of the type of cancer that I have, so we needed to start chemotherapy right away. Isn’t this a “catch twenty-two”? If I remember correctly chemotherapy destroys the immune system and you heal very slowly. That is exactly what is happening!

Meet the surgeon

On July 15th I met my surgeon and he explained what would take place during surgery. Estimated time in the hospital would be 3-5 days.

He felt that I had additional problems with bladder control. If so, he wanted to make any corrections at the time of surgery. An appointment was made and I met with his partner on Friday afternoon, the 18th, and, while sitting in a doctor’s office in a most uncompromising position, I celebrated my 65th birthday.

I did not have bladder control issues.

Diagnosis

On July 10th I started a new journey when the doctor said, “There is no easy way to say this - you have cancer.” This was my OBGYN doctor that I had met with on July 3rd. He wanted me scheduled for surgery as soon as possible and wanted me to finish up any testing that would prepare me for surgery. The appointment was made to meet with the surgeon. They are moving very fast.

I was expecting that sometime in my life I might get cancer but when it becomes reality it is shocking and for a moment life seems to spiral out of control. The reason that I was expecting to get cancer was because of family history on my mother’s side. The cancer victims: mom’s dad, mom, my younger brother, two of my mom’s sisters, her brother, and even as I speak one more sister is dying with cancer and is not expected to make it until Christmas.

My Journey begins with doctor appointments

From July 1st, my first appointment with my new primary doctor, until July 31st, I saw six different doctors, two PAs, and one oncology nurse. This included numerous physicals, ultrasounds, PET scan and other test, including all kinds of blood work, and surgery. I was poked and probed until I could hardy walk. I was given so much information that I was totally overwhelmed with this whole process (still am) but I try to take it one day at a time through the shock, the disbelief, the confusion, the fear of the unknown, the panic attacks, but most of all, the loss of control.

If it were not for all of my friends and family praying for me and being there when I need them – I would not be able to make this journey alone. I am so thankful that God is in control of my future. I will just need constant reminders.