I am discouraged today. Just when I had started to feel like there are too many medical appointments to fit into my life once again--- I got some more. This week, I have had three appointments, and next week I'll have five (six, if we count Kathryn's two year old check-up).
These on top of trying to help my parents when possible during this time of poor health for Dad, babysitting my grandson so my son and his wife can avoid the high cost of daycare, taking care of my own three small children and all of the other tasks that a woman has to take care of in her home. I DO have help from my husband and daughter, but there are a lot of things that the "mom" of the house does to keep things running smoothly. I really NEED to have some rest during the next couple of months as I heal from surgery, deal with lymphodema and face radiation. And, continue to recover from the effects of chemo. HOW to get this balance with so much caregiving to do?
It's a difficult thing, because I WANT to function normally and help my family members, but at what physical cost am I doing these things? There doesn't seem to be much of a choice, though. I AM needed.
My dad was discharged from the hospital on Tuesday late afternoon, and he shouldn't have been. He was clearly not well enough to go home. The poor man came to my home and had no medications for the evening or morning. He can't get by without his medicine. I called a pharmacy to see if we could get his night pills--- it took some time and some work--- but I was able to get them. It was a late evening of running and caregiving. Thankfully, Stephen was on vacation (although it's not been much of one with so much medical with me and Dad) and could tend to the kids while I tended to Dad and Mom. Dad is really not well at all, and it's a huge worry. It's very hard to accept this. I can't fix it. I don't want him to struggle. But... again, I can't fix it. And, I have no idea what Mom will do if something happens to Dad. She's going to need care, too. I'm the only daughter who lives in the same state, although my sister is doing all she can from her location. Usually, it's daughters who do the caregiving for elderly parents. I worry about being able to manage it all while still dealing wtih cancer care, three very small children, a grandbaby, and just the demands of life in general. I am feeling extremely overwhelmed. It's not that I don't want to help everyone else, but I am not physically up to it. It scares me! I'm scared that if my body can't recover well due to so many demands, and the stress of those demands, that I will get cancer again.
Now, for radiation. My breast needs to clear up before we can start. The incisions are healing very well, but I have a redness that could be from infection or something else. I'm on antibiotics. Both the surgeon and radiation oncologist want it to clear up before beginning radiation treatment. In 1 to 1 1/2 weeks I'll go for "simulation" (?), including a CAT scan, tatooing, etc. Then, a few days later, radiation should start--- 33 treatments, going Monday through Friday every week til it's over.
I'm NOT happy about the risks. I'm NOT happy about having MORE side effects. So, now, let's see... risk of leukemia from my chemo, risk of uterine cancer from my Tamoxifen, and now a risk of other cancers from radiation. GREAT. :-/
And, let's not forget the other risks, and the unpleasant side effects. And, the "running" every day for treatment (on top of everything else).
I am so TIRED of medical this, that and the other. I feel like I live inside a broken body. I didn't enjoy circling "cancer" under my medical history at the physical therapy office today. It was almost like I just couldn't believe it's true--- a shock all over again.
Yes, phsical therapy. I have stage one lymphodema. I'll have physical therapy three days per week for one hour and wear a compression sleeve. :-( I'm so discouraged. Yet, if we don't try to clear this up now it can get worse. Once it gets to stage two, we'll not be able to get rid of it. This is going to be a LIFE LONG issue. I am not supposed to use the arm hard, hurt it, reach too hard for something, get bug bites or scratches on that arm/hand., no blood draws, now blood pressure checks on that side.. the list goes on. After a while, as I age, my lymph nodes are going to wear out on that side (because since so many were removed there aren't enough to do the work) and I'll likely have a lot more swelling issues.
I am 41, but I feel like an elderly person. It doesn't seem to feel too fair to me right now. Especially with raising small children.
I shouldn't have done the wallpaper removal in the dining room. It was too taxing for that arm. GRRRR! And, I felt so happy to be doing something NORMAL again, before radiation sets me back again.
Honestly, I hope there will be some sense of reprieve soon---- a break, or permission to not have to do so much caregiving for even a day--- I wish someone could tell me it's okay to have a day off to take care of my body. It's been through a lot: four surgeries, CAT scan, mammograms, ultrsounds, biopsies, bone scan, chemotherapy, lymphodema, medications with side effects....
There is a great sense of LOSS that comes from having cancer and treatment.
I try to balance it by thinking of people who are worse off and being grateful for what I still have, but there are days when I am human enough that I have to do my grieving. It has been OVERLOAD for several months now.
Thursday, October 21, 2010
Friday, October 15, 2010
Up's and Down's
A lil' update:
Breast is healing well. Much finer scar this time, thankfully. Surgeon removed old scar at the time of the last surgery. The breast is red and warm, so went to doc's today for a check-up. Not sure if it's an infection or not, but am on antibiotics just in case. It could be that it's starting to bruise.
Hair is still growing---ever so slowly. Wore wig to do errands the other day and it seemed good to have HAIR. Yet, anytime I looked in the mirror, I did not see "me"... I saw my face with a wig. When I don't have anything on my head, I feel like I look like a man. VERY anxious for my hair to grow!
I'm still tired all of the time, but keep pushing along and trying to live a normal life. In my gutt, I know that I'm not doing my body any justice by not listening to it when I know it's telling me it desperately needs rest. I've GOT to try and find a way to lay down for an hour each afternoon, somehow.
I'm taking care of my grandson (baby) a few days a week, and some of those days it's for about 11 hours. I get really worn out, although I love spending time with him. He's adorable and it's amazing to watch him grow and change as quickly as he is. He's really very sweet and he's a good baby. He smiles and laughs most of the time. :-) Adorable!
Kaylee and I have been stripping the wallpaper in the dining room this week. It's lot of work, but it's also fun. We want to paint it green. We have put some paint on teh walls already. It's darker than we'd hoped it'd be, but it's growing on us.
My father is being transported to a local hospital at this very moment. Trouble with breathing... needs oxygen. He has congestive heart failure. :-( Worried. Also worried about how to hold up with so much caregiving--- my little kids, my grandbaby, my father, my mother... and... somehow---- taking care of my own health. It's very hard!!! I can only imagine how DAD feels right now... it must be so discouraging to be so limited and in and out of hospitals nowadays. :-( he's always been so strong. I feel so sad for him.
Breast is healing well. Much finer scar this time, thankfully. Surgeon removed old scar at the time of the last surgery. The breast is red and warm, so went to doc's today for a check-up. Not sure if it's an infection or not, but am on antibiotics just in case. It could be that it's starting to bruise.
Hair is still growing---ever so slowly. Wore wig to do errands the other day and it seemed good to have HAIR. Yet, anytime I looked in the mirror, I did not see "me"... I saw my face with a wig. When I don't have anything on my head, I feel like I look like a man. VERY anxious for my hair to grow!
I'm still tired all of the time, but keep pushing along and trying to live a normal life. In my gutt, I know that I'm not doing my body any justice by not listening to it when I know it's telling me it desperately needs rest. I've GOT to try and find a way to lay down for an hour each afternoon, somehow.
I'm taking care of my grandson (baby) a few days a week, and some of those days it's for about 11 hours. I get really worn out, although I love spending time with him. He's adorable and it's amazing to watch him grow and change as quickly as he is. He's really very sweet and he's a good baby. He smiles and laughs most of the time. :-) Adorable!
Kaylee and I have been stripping the wallpaper in the dining room this week. It's lot of work, but it's also fun. We want to paint it green. We have put some paint on teh walls already. It's darker than we'd hoped it'd be, but it's growing on us.
My father is being transported to a local hospital at this very moment. Trouble with breathing... needs oxygen. He has congestive heart failure. :-( Worried. Also worried about how to hold up with so much caregiving--- my little kids, my grandbaby, my father, my mother... and... somehow---- taking care of my own health. It's very hard!!! I can only imagine how DAD feels right now... it must be so discouraging to be so limited and in and out of hospitals nowadays. :-( he's always been so strong. I feel so sad for him.
Thursday, October 7, 2010
Looking Ahead
Looking ahead toward the "next step"-- radiation. I have an appointment with my surgeon tom. for a post-surgery exam, and one with my oncologist on Oct. 27th. Eventually, one of them will refer me for a consultation with a radiation oncologist and I'll begin my six weeks of radation treatments. I've heard it usually starts up about a month after surgery. I am hoping to be able to finish before Christmas--- as to not be dragging through daily appointments at a time that I want to have energy to have fun with my children.
I went to a "young survivor's" support group meeting today. It's comforting and refreshing to spend time with other young-ish women who have 'been there" or are "there". As hard as anyone else tries to empathize and understand, no one truly "gets it" like someone else who has been diagnosed with breast cancer. It is a really traumatic experience, and it comes with unique challenges.
All of that said, but not with the intention of underestimating the importance and effectiveness of the support of family and friends to anyone battling breast cancer. It's intergral to have those supportive people in one's life and I can't fathom going through something like this without "support people". It would be HORRIBLE!
At the same time, I'm feeling the importance of connecting with other survivors. In their company, one can "let her hair down" (pun intended) and feel a sense of normalcy during a very uncertain and abnormal time in her life. In a group with other bald women baring battle scars and coping with treatment side effects--- there's a sense of belonging when you don't quite feel like you blend in with the general population any longer. To put it mildly, I feel like I'm "walking wounded" these days. I feel uncertain about my health. I know how REAL cancer is. My life will never be the same. I'll never look at my life the way that I used to. Before getting cancer, I was well. I didn't think about illness, and I didn't have to know what it's like to function with an illness. Now, I am reminded of my diagnosis every time I look in the mirror and each evening as I take my Tamoxifen dose.
One of the hardest things about coping with breast cancer is trying to figure out how to still feel feminine. Losing one's hair is a very emotionally painful experience for a woman. I feel stripped of my femininity. No amount of make-up or jewelry can compensate for what is lost from my scalp. Everywhere I go I see women with their hair in tact. I see them on television. I want my hair. I want to remember what it feels like to run my fingers through my hair.
My hair IS beginning to fill in again, but it's sooo short. In fact, I don't quite have enough hair to qualify for a military buzz cut. Almost, but not yet. It's very soft and I'm grateful that it's growing, but I'm disappointed that it's taken eight weeks just to get this little bit of hair. I'm guessing that it will be January before I'll have about an inch of hair all over my head to gel or do something with. I DREAD "looking like a man" for months. I've never been a short hair kind of person.
On the flip side, I know I should balance out this sense of loss and this frustration with gratitude--- I am alive today. Losing my hair was a small price to pay for having life-saving treatment.
It was encouraging today to meet another survivor (having survived breast cancer TWICE)--- she has nice, long hair again and looks healthy. I'll get there, too, Lord willing.
What I long for is peace and quiet. I need DAYS and NIGHTS--- for weeks--- of a slower paced lifestyle with only the demands of my immediate family. Taking care of three very young busy children and our home is ENOUGH (more than enough) while recovering from chemo and surgery and enduring radiaion. I shouldn't feel guilty for not being superwoman. I need to give myself permission to fall short in some areas, and to not feel guilty for saying "no" to outside demands and requests. If I don't take care of my health and well-being through this cancer experience, how am I going to feel up to caring for my husband and children? And, they are my top priority.
There are other people in our family who need care right now---and this is not a time when I can step up to the plate and take on all of their needs. When I am well again, I will be able to add more responsibility to my life. But, for now, I hope and pray that other relatives who are physically well and financially more able, can attend to more of the needs of others (especially elderly) in the family who need caregiving. I wrestle with false guilt in this area, but I have done the best that I can to reach out in offer help and encouragement to others when I feel like I am barely surviving myself most days. I need to heal and become well again before I can effectively help others. Lately, I'm burning out. What energy I have has to go to my small children. They can't help themselves. They need me.
Most days lately, I feel like I stagger through the days, all while wishing I could have a lot more rest. I NEED an afternoon rest/nap time each day. I NEED to be in bed early at night. I NEED a lot of peace and quiet, and low stress.
This is a season in my life. It will come to pass. But, for now, I need to focus on getting well while tending to the most immediate responsibilities--- my kids.
I went to a "young survivor's" support group meeting today. It's comforting and refreshing to spend time with other young-ish women who have 'been there" or are "there". As hard as anyone else tries to empathize and understand, no one truly "gets it" like someone else who has been diagnosed with breast cancer. It is a really traumatic experience, and it comes with unique challenges.
All of that said, but not with the intention of underestimating the importance and effectiveness of the support of family and friends to anyone battling breast cancer. It's intergral to have those supportive people in one's life and I can't fathom going through something like this without "support people". It would be HORRIBLE!
At the same time, I'm feeling the importance of connecting with other survivors. In their company, one can "let her hair down" (pun intended) and feel a sense of normalcy during a very uncertain and abnormal time in her life. In a group with other bald women baring battle scars and coping with treatment side effects--- there's a sense of belonging when you don't quite feel like you blend in with the general population any longer. To put it mildly, I feel like I'm "walking wounded" these days. I feel uncertain about my health. I know how REAL cancer is. My life will never be the same. I'll never look at my life the way that I used to. Before getting cancer, I was well. I didn't think about illness, and I didn't have to know what it's like to function with an illness. Now, I am reminded of my diagnosis every time I look in the mirror and each evening as I take my Tamoxifen dose.
One of the hardest things about coping with breast cancer is trying to figure out how to still feel feminine. Losing one's hair is a very emotionally painful experience for a woman. I feel stripped of my femininity. No amount of make-up or jewelry can compensate for what is lost from my scalp. Everywhere I go I see women with their hair in tact. I see them on television. I want my hair. I want to remember what it feels like to run my fingers through my hair.
My hair IS beginning to fill in again, but it's sooo short. In fact, I don't quite have enough hair to qualify for a military buzz cut. Almost, but not yet. It's very soft and I'm grateful that it's growing, but I'm disappointed that it's taken eight weeks just to get this little bit of hair. I'm guessing that it will be January before I'll have about an inch of hair all over my head to gel or do something with. I DREAD "looking like a man" for months. I've never been a short hair kind of person.
On the flip side, I know I should balance out this sense of loss and this frustration with gratitude--- I am alive today. Losing my hair was a small price to pay for having life-saving treatment.
It was encouraging today to meet another survivor (having survived breast cancer TWICE)--- she has nice, long hair again and looks healthy. I'll get there, too, Lord willing.
What I long for is peace and quiet. I need DAYS and NIGHTS--- for weeks--- of a slower paced lifestyle with only the demands of my immediate family. Taking care of three very young busy children and our home is ENOUGH (more than enough) while recovering from chemo and surgery and enduring radiaion. I shouldn't feel guilty for not being superwoman. I need to give myself permission to fall short in some areas, and to not feel guilty for saying "no" to outside demands and requests. If I don't take care of my health and well-being through this cancer experience, how am I going to feel up to caring for my husband and children? And, they are my top priority.
There are other people in our family who need care right now---and this is not a time when I can step up to the plate and take on all of their needs. When I am well again, I will be able to add more responsibility to my life. But, for now, I hope and pray that other relatives who are physically well and financially more able, can attend to more of the needs of others (especially elderly) in the family who need caregiving. I wrestle with false guilt in this area, but I have done the best that I can to reach out in offer help and encouragement to others when I feel like I am barely surviving myself most days. I need to heal and become well again before I can effectively help others. Lately, I'm burning out. What energy I have has to go to my small children. They can't help themselves. They need me.
Most days lately, I feel like I stagger through the days, all while wishing I could have a lot more rest. I NEED an afternoon rest/nap time each day. I NEED to be in bed early at night. I NEED a lot of peace and quiet, and low stress.
This is a season in my life. It will come to pass. But, for now, I need to focus on getting well while tending to the most immediate responsibilities--- my kids.
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