What I am finding out about my health situation is I am dealing with pain on a regular basis, everyday. I get out and go and shortly have to take pain meds to get through anything I am doing. My bones hurt still as a side effect from the Taxol. This pain in staying with me and it is very consistent. It has been four months since that drug was infused into my body. What I have noticed is that it has gotten much worse, not better. Nothing can touch the kind of pain I experienced during those 8 weeks of getting the Taxol. However, the residual pain is real. It seemed to worsen during my radiation treatments and now has increased to a new level all together. It is here everyday and now comes on at all hours of the day from early morning to late evening my bones hurt. I could be sitting or standing doing nothing and I might have pain shooting through my fingers, my forearms, my shins, my feet, my knees, my wrists, all at the same time. I have noticed that the colder weather is making it worse. Before I ever was diagnosed with cancer, I dealt with swollen joints, a swollen left ankle, and weather related pain. I thought that if I would have gone to a doctor about it, I would probably be told I had some form of arthritis. Since my treatments, I feel somewhat crippled unless I am on the pain medication. As soon as it wears off, I am in pain again. I don't know whether it will ever go away. Sometimes I think things are fine and then BAM!!!...it hits me so suddenly and so strong that I have somewhat of a panic/anxiety attack and start to cry. It sometimes catches me by surprise when I think I am doing OK. I think sometimes the emotional pain is just as bad as the physical. This has happened at work a couple of times and it is a cruel reminder that things may never be the same. I will find myself mixing color about to service a client and I am crying like a baby in the back room. This is when I feel like I have been robbed. Robbed of my occupation, my income, my livelihood, and all I have worked hard to achieve the past 18 years of doing hair and building such a strong client base. Right now I am going in on Fridays and Saturdays. I work about six hours each day. The pain from working is real and great. It is physically very taxing. I have less than 50% of my client base left. Not working for about 7 months makes this happening inevitable. My client base was made up of about 85% color clients, many who drove 45 min or more to see me. They are professionals who always look top notch. They have had to find stylists to replace me and prefer to try someone closer to home if they are going to make a change. After January, I will begin my reconstruction surgeries, 3 total. By law, there is a 90-day waiting period between each one. My hope is to have some good enough times between each surgery to service the clients I have left. I know I will lose more, it is inevitable. I find it sad, but I know that my physical body will limit the amount I can do anyway. I know it is probably for the best. In the back of my mind, I keep thinking that I need to think about other occupations. I just don't know how to do that when working so little right now hurts so bad. I know that God is in control of this situation and he knows the plans he has for me. I don't want to sound complaining or miserable, because I have so much to be thankful for everyday. I do want people who are going through this to know what is happening to me, realizing that every case is different.
There is a dear girl who I met during chemo. Her name is Kim. She often sat next to me and was always there with her fiancee. She too, was being treated for triple negative breast cancer. She was about a month ahead of me in her treatments. I saw her at the cancer center a few weeks back. Her hair had grown out about an inch and she looked great. She was there delivering some Scentsy candles that some ladies had ordered. We spoke, said hello, and parted. A couple of weeks back on facebook I noticed that her profile picture was a picture of a Texas Christian University purple Scentsy. Since I am an alumni, class of 1990, I asked her about the candle. She had some bad news that her cancer was back and had spread. She always has a great attitude and told me not to worry. She was concerned about telling me and explained that just because hers was back, did not mean that I would not be OK. She sweetly consoled me and told me I would be fine despite her new diagnosis. Please pray for her. She is staying busy managing apartments I believe. She has the best attitude always!!!!
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Penny, I am a 4 time TNBC survivor. Last July I celebrated my 3 year cancerversary. I tell you this because I was where you are and I understand. I often tell people it's like you feel 20 yrs older with severe arthritis, brittle bones, teeth and ribs crumbling, my weight doubled, etc. Penny, you are not alone. If your skin splits or peels, pls tell your dr. Our immune system is compromised. I still cry. Don't want to scare you but I had a breakdown. The fear of it coming back a 5th time paralyzed me. No one else could understand why I couldn't put it behind me, be normal again. Reconstruction is not an option for me and my removal is high as my collarbone and as low as my lowest rib. Breast cancer changes you. TNBC is a whole other thing. Nothing wrong with crying my dear. Your just finishing treatment so crying everyday is common. Crying, with anxiety and depression is different. Most don't talk about it but, you may need help with anti-depressants and go to therapy one on one or with a support group. I'm still in therapy. I won't lie, we are all different and some bounce back faster than others. Others need more help and support. There's nothing wrong with that. Don't expect anyone in your family to understand. No one who hasn't had the journey can understand. We hope they won't ever. Surround yourself with positive people who are willing to listen and not judge. I thank God for my sister survivors on Facebook. I was drowning. Just couldn't get it together and they saved me. Still do. So, call your Dr. pronto and tell your Onc you need help. You see, we are so busy trying to stay alive that we don't really feel the full court press until after treatment. And, my dear, pls note how many pain killers you are taking. The last thing you want is to get addicted. Ask your Onc to refer you to Pain Management. They can help you find the drug that will help. The need to take so many is an indicator that what you're taking is not working very well. Also, feel free to contact me if you need to talk, day or night 347-486-2100. I listen very well and I am open to any questions you may have. In the mean time, keep moving, keep praising God no matter what and know that All things are possible with Jesus Christ who carried us through and saved us. Be well and God bless you. Yvette G.
Penny, I am a 4 time TNBC survivor. Last July I celebrated my 3 year cancerversary. I tell you this because I was where you are and I understand. I often tell people it's like you feel 20 yrs older with severe arthritis, brittle bones, teeth and ribs crumbling, my weight doubled, etc. Penny, you are not alone. If your skin splits or peels, pls tell your dr. Our immune system is compromised. I still cry. Don't want to scare you but I had a breakdown. The fear of it coming back a 5th time paralyzed me. No one else could understand why I couldn't put it behind me, be normal again. Reconstruction is not an option for me and my removal is high as my collarbone and as low as my lowest rib. Breast cancer changes you. TNBC is a whole other thing. Nothing wrong with crying my dear. Your just finishing treatment so crying everyday is common. Crying, with anxiety and depression is different. Most don't talk about it but, you may need help with anti-depressants and go to therapy one on one or with a support group. I'm still in therapy. I won't lie, we are all different and some bounce back faster than others. Others need more help and support. There's nothing wrong with that. Don't expect anyone in your family to understand. No one who hasn't had the journey can understand. We hope they won't ever. Surround yourself with positive people who are willing to listen and not judge. I thank God for my sister survivors on Facebook. I was drowning. Just couldn't get it together and they saved me. Still do. So, call your Dr. pronto and tell your Onc you need help. You see, we are so busy trying to stay alive that we don't really feel the full court press until after treatment. And, my dear, pls note how many pain killers you are taking. The last thing you want is to get addicted. Ask your Onc to refer you to Pain Management. They can help you find the drug that will help. The need to take so many is an indicator that what you're taking is not working very well. Also, feel free to contact me if you need to talk, day or night 347-486-2100. I listen very well and I am open to any questions you may have. In the mean time, keep moving, keep praising God no matter what and know that All things are possible with Jesus Christ who carried us through and saved us. Be well and God bless you. Yvette G.
My precious Penny, Huge hugs! Do you get enough hugs?
Yvette has some great advice. I'm glad you have some connections with those who have been down the road you're traveling. I've often wondered if you were in a TNBC support group locally. I'm sure the physical pain I struggle with is nothing compared to what you face. I use to take pain killers often, but didn't like doing so. Part of mine may be fibromyalgia, another part may be depression, another part may be from old injuries, and I've learned that part of it is from diet. I go to a chiropractor from time to time as the stress tends to get joints out of alignment. Getting chiropractic adjustments has almost eliminated my need for any kind of pain med. There was a time I could afford a massage every week. Those definitely helped and I often cried, which definitely indicates a lot of toxins built up from probably all kinds of emotional pain. The weather changes are a definite battle for me due to the old injuries and possible fibromyalgia. I really try to do any kind of stretching of myself while I'm still under the covers in the morning. Especially doing little ankle exercises and wrist exercises to help get the blood flowing before I get out from under the warm covers!
A friend told me about things regarding diet. I was skeptical, but followed her advice, went to Sunflower Shoppe, and met with a nutritional specialist whom she referred me to. To make a long story short, he advised me to try to follow a particular diet. I was amazed that in a few days of trying to follow it, even if I was only successful with 1 out of 3 meals a day, the pain was disappearing and I was feeling like a completely different person. All probably leading to some type of food intolerance, have yet to narrow down exactly what foods are affecting me.
Well, I best get going. Wish I could just sit with you and hug you for awhile right now. Hope that hubby of yours does that with you. If not, ask him to! That is a way to take care of yourself. Just have him hold you so you can just cry and feel secure. And if you don't need him to say anything or want him to be quiet, tell him. Or maybe you need one of your friends to just sit and hold you. So please do what you need for yourself.
HUGS!
I deleted the double posting of the comment. Site must be having issues.
Penny - i, too, was diagnosed with TNBC...i completed treatment 3 1/2 years ago...lumpectomy, chemo (a different regemine than you and 35 rads i've had two reconstructive surgeries...i'm so sorry the rads have been so tough for you...i was able to work every day throughout the radiation tx...i still have pain in the radiated breast but mostly just go on with life. i am keeping you in my thoughts and prayers....
Dear Penny, I am speechless. I think like your other friends told you that you need to go to some group throphy, and may be take some anti depression. It is very hard for us to understand what you are going through. The advice of seeing a pain management doctor is very good. I feel horrible for you my child. I see you tomorrow.
I wish I could take this all from you. Don't be afraid to ask for any help you need. Let the drs know what's going on and ask about your options for pain, depression, etc.
Love you, sis!
Dear Penny, When you are in pain, depressed and crying, just know that we are praying for you. Our prayers are that the Lord will lead you to those who can help you deal with these many, many issues you are facing.
To paraphrase verses from Psalm 28: Praise be to the Lord, for He hears your cry for mercy. The Lord is your strength and your shield; your heart trusts in Him and you are helped.
The prayers of those who love and care for you will sustain you and are with you through the dark journey you are experiencing. We cannot know what you are going through; we continue to pray that you will feel our love and prayers and be strengthened by them. Love, Aunt Sharon
Penny,
I just celebrated my 2 year cancerversary of TNBC.
Some of the things that I learned from this crappy journey that no one wants to be on are some "should haves". Never good to live in a should-a, could-a world, but here's what I learned:
1. Seek a counselor. Not later, when everything crumbles, but now. Personally finding a counselor who has experience working with cancer patients has been a godsend!
2. Work with a psychiatrist or your PCP to find the right antidepressant.
3. Find a support group where you can meet others going through cancer treatment. Meetup.com is a great place to start as well as American Cancer Society. I was afraid that I would cry through the entire group. . . .but there is much laughter.
4. See a Rheumatologist and/or a Pain Clinic. It is very difficult to heal physically, mentally and spiritually when we are in pain.
Please know that you are in my prayers and thoughts!
Renee
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