This is the post excerpt.
Numbers play an important role in everyone’s life. A lot of times without even noticing, everyone is concerned about some type of number. Sometimes numbers can be good or bad. I know that numbers have always played a role in my life. Whether it be birthdays gone by, number of days to vacations, performance goals, countdown starts on Monday for the weekend and the list goes on and on. Numbers play an importantly role in cancer treatment too. Sometimes, it easy to get caught up in the numbers instead of living life.
There are so many important numbers to look at when going through cancer treatment. Will my blood work numbers be good enough for me to continue treatment? What cycle of treatment are you on? Will my white blood count be low so I have to be concerned about infection? Taking your temperature twice a day and praying the numbers don’t indicate an infection. Will the platelet count be low to be concerned about bleeding and bruising? Will the red blood count be low and cause anemic symptoms? How many more days do you need to take this medicine? How many more pills can I actually be expected to take on a daily basis? How many more days/months until the next scan to see if the cancer has progressed or stable? How much was that bill for? Getting caught up in the cancer statistic numbers is so easy. I know more about blood work numbers now than I ever wanted to know. Some of the numbers patients do need to monitor. You must not let these numbers dictate how you live your life.
I still find myself looking at the numbers and comparing to previous months. Do these numbers play as important role as they did in the beginning? I will still enjoy any good news in the numbers, yes but I do not let the numbers allow me to get me upset. I do not have control over these numbers. I do not let the numbers determine how I am going to live my life. Is God looking at these numbers to determine my life? As long as I can, I will live my life to the fullest and enjoy every moment I have.
Joshua 1:9 – ‘Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.’
If you ask many cancer patients what one of their main concerns are about Chemo, a lot will say hair loss. It is to be expected. I never thought about it before, but I took having hair for granted. Now that I have been bald before, I know that hair is just that hair. It shouldn’t define who I am as a person.
When I started my new treatment this year, the nurse told me I may have hair loss or thinning . Well, that brought up a bunch of questions. How likely was I to lose all my hair and if thinning how much to expect. I am not new to being bald. The first time I had chemo in 2014, hair loss was expected and I chose to shave my head before it fell out on its own. I didn’t mind being bald but I did like having hair better. I was lucky and my niece Kristi is a hairdresser and shaved my head for me. It was more of a personal feeling and family was there did not make the experience as dramatic. My husband Steve even shaved his head at the same time. I have never imagined what I would look like bald. I have to admit it wasn’t as bad as I thought it would be. Steve would shave my head for me every week. It became a nice time where we would discuss things to keep our minds off the current situation. I was not an easy person to shave because I wouldn’t keep still. So kudos to Steve for being patient and understanding. I chose not to wear a wig. I had brought one but only wore it once or twice just to see how I looked. It was a very pretty and nice wig. The place where I got the wig matched my current hairstyle and color from a picture and it did look great. I just liked wearing it bald. I got many compliments on being bald but also some people were uncomfortable with my baldness. I did wear chemo hats a lot because it was winter time. As anyone who is bald can tell you, my head sure did get cold in the winter. There are other alternatives such as the cold chemo cap that can be worn during chemo to avoid hair loss. Not a lot of chemo centers offer the cold cap option currently. It is a nice option if hair loss is a major concern.
For more information about the cold chemo caps,
After my first set of chemo treatments in 2014, I waited for my hair to come back. I had heard so many stories about the hair texture and color changing after chemo. Well, when it started growing back it was gray very fine hair. I didn’t like it. I told Steve that we would keep shaving it until it either changed or I would reserve myself to being bald. After about a month of shaving the gray fine hair away, it finally started growing back brown and the regular texture. I was so glad.
So over the years, my hair has grown back almost the same as it was previous to chemo. So, facing losing my hair again did not seem as much of an issue for me this time. My hair did start thinning after a few weeks of my current treatments. Other survivors had stories of some losing all their hair under this treatment while others were able to keep their hair. Not many people even knew my hair was thinning unless I told them. The most noticeable for me was my eyebrows were thinning. So, I discussed with many people and even prayed to God about if I should shave my hair, The thinning for me just felt and looked weird. I would and still do ask Steve if he thinks if my hair is thinning.
At CTCA, I also meet with a neutropath specialist during treatment. A neutropath specialist to me means someone that can assist me with alternative means to combat a situation without relying on medication. It was recommended that I start biotin supplement. Biotin is used to strengthen brittle nails, hair and many other options. I started the biotin supplement and als started using ogx biotin and collagean shampoo. For, now I am happy to report my hair has started growing again and it has more volume than before. I still am prepared that other treatments may cause me to lose my hair and I may bald again. For now, I just enjoy what I have.
A very close friend of mine, sister died a couple weeks ago from brain cancer. She sent me an email yesterday. From the email I could tell that she was not having a very good day, so I called her today and she asked me why her sister didn’t fight more. I thought what could I say that would make her feel better. It may not seem like she didn’t fight anymore. Chemo is tough on anyone. Especially when your body is weak and the cancer is aggressive. Her sister had fought as much as she could and then left the fight in God’s hands. Each person’s journey is totally individual. Don’t compare them. Even though two people may have cancer, their types, treatment and circumstances are totally individual.
After the first time I had breast cancer I said afterwards , I would never have chemo again here I am getting chemo again. Time and circumstances make you forget the bad side of cancer. I have a friend that died from lung cancer last year and had decided that he didn’t want any treatments. I totally understood but some questioned his decision. Chemo is tough not only on the patient but on family and friends. Everyone fights in their own way. Sometimes it may seem like giving up would be easier.
I was talking to my primary care doctor today. She asked how I always stayed positive and smiled. I wouldn’t know how to do it any other way. I have my faith, a great family, great friends and a positive attitude. That’s half the battle. The side effects and treatment are the hard part. I share my experiences just to show what I am going through. I have my tough days too. A couple of weeks ago , I had a terrible day. I had a migraine headache and it just seemed that everything hurt. I stayed in bed the whole day which is something I rarely do. Steve came home and I was just laying in bed wide awake. I knew it was hard for him to see me like that. So I mustered up what energy I had, got up and went for a short walk with him. I knew it would make him feel better and it made me feel a little better too.
I told my oncologist yesterday about my back hurting more now. He asked me if I took the pain pills he had prescribed and if needed anything stronger. Well, I of course told him that I took them if I was I terrible pain. He again counseled me that the pain pills are there for any type of pain and there is no shame in having to take them. I just don’t like taking pain pills. No real justification, just I really don’t like how they make me feel afterwards.
No one is guaranteed tomorrow. Make the most of the life you have now. Enjoy all the time you have. Enjoy life’s victories!
Life truly is short. We often don’t like to think about it, but this really could be our last day to live. But that shouldn’t frighten us as Christians, because Jesus has promised that He will give eternal life to all those who put their faith in Him (John 10:28).
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My experience at Wind River Cancer Wellness retreat
It has been a week since I went to the Wind River Cancer Wellness retreat . I
returned home with a new special spot in my heart for Wind River and the new friends I made. The retreat was awesome and the views spectacular. The retreat has helped me learn to listen, share my feelings, and communicate with others and meet new friends. I do not have words to describe how awesome my experience was there with you all. Wind River provided so many opportunities and I now feel rejuvenated and reconnected, exactly what I needed at this point in my cancer journey. My heart felt gratitude for your hospitality, your kindness and caring, your sharing of so many helpful techniques and ideas to incorporate into my everyday life. There were so many special moments to look back on. We did everything from painting, yoga, nutrition, tai chi, and many others.
Thank you to Dave Pschirer and Shannon Carney for offering this wonderful opportunity!
The experience is beyond words. If you know of a cancer survivor that would like to go to the retreat, please let me know.
I thought I would share my experience with you all. If it saves , anyone from what I went through that would be great!
The plastic surgeon did a great job with my reconstruction. For that I am thankful! After that, it was really obvious that he made recommendations that would make him the most money!
Considering cool sculpting, let me just say don’t do it. It is super expensive. In my case, it cost 2000.00 . Cool sculpting is not covered by insurance. My plastic surgeon recommended to me after my reconstruction surgery to remove the excess skin. (I didn’t know it wasn’t approved by the FDA for that area until afterwards.)Well that didn’t work. It was painful. I was told there would not be painful and I wouldn’t feel it. Wrong, I was in worst pain I have had. Even worse than any of my surgeries. I actually had to take pain pills for days afterwards. It left hard scar tissue. Of course the doctor said, it wasn’t from cool sculpting. I didn’t have it before that. I had to get weeks of physical therapy to break up the scar tissue and get my range of motion back in that area.
When I went back for a follow-up appointment with the Doctor, he said I should get cool sculpting for the excess skin. What I already had it, well maybe you should get it again. Uh, no I don’t think so!!! Needless to say I won’t be going back to him.
If you are considering cool sculpting and want to talk about it with me just let me know. This is just my experience and opinions. Others have obviously had a better experience.
Today is the 21st day of ibrance the oral chemo. I was so ready for this day. I have been counting down since the beginning. I have never been so happy to see an empty pill bottle. Thank God I was able to complete the first cycle. I get 7 days off. I technically am not sure why I get 7 days off but I hope it gives time for my body to recover. I also finished my booster chemo injections so now I will get the injections once every month. I bombed my blood test this week . Everything was low WBC, platelets, hemoglobin, potassium, etc. Dr. Citrin said we will continue the high dosage of ibrance and Faslodex for now. If the blood tests still come back low then may have to lower for the next cycle. I have to get my blood test every two weeks here. The results are sent to CTCA. My potassium levels are so low, I get to add potassium pills to my daily pills. All of this may explain why I am so tired.
As a result of the low platelets, my injections bleed for a while and left some pretty bruises. Needless to say I haven’t been sitting for long. I am sure they will get better soon. I thought, not that anyone told me it was the case, that these injections and oral chemo would be easier than the IV chemo I had the first time I had breast cancer. I guess each type has its own side effects. One is definitely not easier than the other though. Or, I may not want to remember how bad the first chemo was. Other patients have told me that the side effects can differ with each cycle. I pray it gets better with time. I know a lot of other patients have a lot more side effects than I do.
I know that this is a long-term plan. It was great to hear Dr. Citrin say that I was doing great so far. I know that God is with me!
My first oncologist Dr. Fernette used to tell me
Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand
There have been many days that I have prayed to not only to take the cancer away but to also make each day better. I know that God is right beside me and will get me through this like he has everything else. I know my faith, attitude and all of your prayers and support will see me through this. I pray for all those going through hard times. Even though things may be rough some days, I know that there are some people way worse off than me.
Psalm 55:22 Give your burdens to the LORD, and he will take care of you. He will not permit the godly to slip and fall.
There are differing opinions about breast cancer survivors getting a PET scan. Even when I was first diagnosed with breast cancer, I did not get a PET scan. I had a CT scan. My oncologists always told me that PET scans were not done as follow-ups because of lack of evidence that PET scans revealed recurrence or metastasis, too much radiation, cost, and anxiety. I always thought these were bizarre reasons for not following up for recurrence of breast cancer. I had already had 26 weeks of radiation. How much more could one test do? Doctors told me that the patient knew better than anyone if there was something unusual going on in their body. My follow-up exams consisted of breast self exams by the doctor and asking how I felt. There were no blood tests done. Not even, the simple blood tumor marking blood test. Some doctors do scans and blood tests as a regular follow-up. If in doubt, seek a second opinion.
I believe the real reason lies in the cost to perform a PET scan and getting the insurance to cover it. The blood test for tumor markers is not very expensive so I never understood why a doctor would not perform that just as a precaution.
A PET scan is Positron Emission Tomography. It is a nuclear test. I didn’t really know what to expect when I had my first PET scan. It was early in the morning and could not have anything to eat six hours before. No exercise 24 hours before the test. Could drink water. First, I went into a separate office. The nurse then asked a series of questions. The nurse will go to another room and get the radioactive sugar injection. The hardest part for me is the needle and finding a vein. After the injection is given , I went to a separate room with nothing in it but a recliner, warm blankets, bottle of water and a camera. I was told not to move not even read a book or watch tv. I had to sit there still for 45 minutes before the PET scan began. The nurses watch you from a viewing room. Went to another room and the scan began . Thank goodness I am not claustrophobic. The test lasted 30 minutes. Time can vary depending on what areas are being scanned. At CTCA, the oncologist gets the results within a few hours. Sometimes you would wait a couple of days for the result. The waiting for the results begins. Try to occupy your time with something distracting. For me, praying works!
You will meet the doctor and review the PET scan results. An example of my result
MUSCULOSKELETAL: The osseous metastases have progressed. Although there is now alarge sclerotic metastasis visualized in the left aspect of the L3 vertebral body, the activity has slightly decreased, with maximum SUV of 10.2 (previously 10.8). However, the extent of the active lesion has increased. There is new activity in the right acetabulum on image 220, with maximum SUV of 12.1, compatible with metastasis. No definite CT correlate is visualized. A new sclerotic lesion is visualized in the right femoral head measuring 1.0 cm which is hyper-metabolic, with maximum SUV of 6.7. A new sclerotic metastasis is also noted in the left femoral head, with maximum SUV of 5.7. The metastasis in the left anterior acetabulum has increased in extent and activity, demonstrating a maximum SUV of 10.5 (previously 8.2).
To me reading this the only thing that stood out to me was metastasis. I knew that meant the cancer had spread. The other parts were confusing. My doctor,explained it all to me and what the next course of action would be.
A PET scan does not need to be a cause of worry. It should be a regular test to monitor a patient’s chance of recurrence.
For more information about PET scans and how they work
Lean on your faith and God during these times.
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10
When I was waiting in the room for the PET scan, that left lots of time for praying!
“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
I will get my follow-up PET scan in 3 to 6 months. I am praying for no progression and decreasing sized lesions.
I believe more studies should be done on breast cancer survivors need for PET scans.