Insomnia, indigestion, sleeping all day when I don't want to, chemical peel looking face and skin, dry mouth, boredom, not having enough energy to do what's on my mind to do! Just getting started....more lovely things to come!
Got all my scarves picked out. Had a great shopping day with someone who has awesome taste!
Getting help from loved ones. Taking care of everyday life when I can't. Love you all so much more than you know.
What's next? Ready to go. Need a good day out at the river watching my kids swim and play. Not gonna stay down! Gotta keep moving!
Club Chemo every Tuesday! Party time! Ready to kick cancer in the ass!
Friday, June 26, 2009
Tuesday, June 23, 2009
2 down....
Second Chemo treatment today. 2 down, more to go. Not counting. Laughter, love, comfort, care, the healing. Having the company of a soul mate and being looked after. Medicine is in the background. The rest is the real medicine. I love you all who love me. It is my power. My energy.
Saturday, June 20, 2009
Life must go on...
Taking my birthday boy to an amusement park for #7! He is so excited. I may not be able to get on the rides with him, but I'm not missing the joy on his face for the world!!
Thursday, June 18, 2009
Wednesday, June 17, 2009
Chemo Starts
Well, I am certainly learning alot about a new club I never intended to join. My eyes are opening to alot of new experiences that seem all too familiar to all the people who have been doing this longer than me. Cancer. It is what it is. And now that label is on my forehead. And all the lovely things it comes with...
...being tired all the time
...everything I do for others...not being done
...my boys watching their once very active athletic mother not be that
...watching my husband do double duty without question
...watching the toll it's taking on him
...watching the toll it's taking on my friends
...feeling how much I never knew I mattered to others
...wanting to stay strong, but sometimes...I just can't
...then those who know and love me kick me in the ass!
...tomorrow's another day
I have about 3 weeks or so left to enjoy my hair...so they say. The people taking care of me know what they're talking about. They're good people. I'm under good care. It's alot of work to get there. Long road trips but so worth it. Left the bad care
that was close and convenient. I had my first chemotherapy treatment yesterday. They did all possible to make it a "comfortable" experience. I had alot done though and it took all day, literally. I counted about 11 medications I received by IV ...one at a time. Got sick on some, but handled it all like a trooper.
that was close and convenient. I had my first chemotherapy treatment yesterday. They did all possible to make it a "comfortable" experience. I had alot done though and it took all day, literally. I counted about 11 medications I received by IV ...one at a time. Got sick on some, but handled it all like a trooper.Had to get another medication today that will stimulate my bone marrow to produce white blood cells to help what I've lost since yesterday. This is worse than the chemo. Feeling very sick tonight as I'm describing this. Sitting still and typing is about all I'm capable of now. Just focusing.
The help I've had today to get through the day was amazing. My "best" is there for me all the way. This is love. The rides to and from are mechanical. It's the stuff in between that keeps me alive and going. A side track of shopping. Parenting my children when I can't. Making my kids feel at home and loved when I'm not there. Throwing the football around. Sharing a song. A look. A beer. A good joke. A smart ass remark. Knowing when to be quiet. Knowing when to laugh. Being known.
I've cared for others my entire life. Others have depended upon me. I drop everything and go where I'm needed. I love life intensely. I love my family and friends intensely. Caring is what I know and who I am. Caring was my profession! The nurses and doctors find it easy to relate to me when they find out I was a Social Worker. It makes it easy to speak "the speak" of medicine and caretaking.
Now I've had to learn to receive. Still not easy, but I know I must in order to survive. I realize as hard as it is at times, it's good for those who help me too. I must accept that and not feel bad for the hard work everyone is doing to help me survive, even the mundane everyday things. I'm lucky. My circle may be small, but it's very tight.
Beyond that, I'm learning how "BIG" my unwanted club is. And I'm doing what I can to get involved in the bigger fight out there. Not only cancer as a whole, but in particular breast cancer among those so young as myself. We are the ones falling between the cracks because of awareness, insurance, money, standards, medical shortcomings, lack of research and the list goes on. The worst one I hear myself and that others share with me..."You're too young to be sick". A slap in the face when you're suddenly fighting for your life when you thought you had everything ahead of you. Well, if I can't accomplish the things I set before myself in the short term before this started, I have the fortitude to fight the big fight out there in the political and medical world. I will not be silent. I will be one more voice to speak up for those who can't to fight for change so all this needless illness can stop or be caught earlier. Older women have a greater chance of survival because of the current medical standards for detection and treatment. Younger women are not listened to or tested. It must change. If you are a woman reading this, please join me to help yourself and those you love by joining the ARMY of WOMEN. It is research on real women to find a way to prevent, cure and detect cancer earlier. Don't believe that ONE won't make a difference. A group is formed by a whole lot of ONES.
Thursday, June 11, 2009
Port surgery
Had the surgery yesterday. Got up pretty early....4:30a.m. First on the table at 7:30a.m. Well, it was surprisingly a very positive experience. It sure makes a difference to be under excellent care by very good caring people. I have an amazing surgeon who gives me complete confidence in my care. She has a great personality that I jive with and is excellent at what she does.
Of course I was very anxious the night before and didn't sleep very much. Full of adrenaline all day!
From beginning to end, the staff and doctors were wonderful. Leaving my worries to rest. We arrived at the hospital and were received in caring hands. We will stay put with this team for now. Trying to go to other facilities for the sake of location or convenience was a mistake. Quality care is priority, no matter the sacrifice. I am fighting for my life and what that means, so we must keep that in mind. The children will adjust. Eventually, all that is inconvenient will become routine. The strain it puts on my family and friends will become a normal day and we will all come through to the other side. I must keep learning to let go and be cared for. A difficult adjustment for such an independent woman as I am. Humbling.
Here I am, getting ready to have a Central Intravenous Catheter installed so that I may proceed with chemotherapy as aggressively as needed. It's amazing what they've come up with now. I'm glad to be at this point in medicine that I won't need to be stuck with needles constantly once or twice a week. This device will be able to stay indefinitely. It must be surgically removed, so hopefully by the time I don't need it, it would be time to celebrate.
It is a valve that has been surgically placed below my collar bone with a catheter inserted into my major vein leading to my heart. Each chemotherapy treatment will be done by placing a special needle into that valve just below my skin. This prevents wasting of veins and collapsing/deterioration. It appears as a large lump under my skin with a 2" scar from the surgical incision. I'll take a lump over bruised arms!
Telling my boys about it was an adventure. As far as they are concerned, Mom is part Bionicle with a new "button". The doctors can give Mom medicine into the button which will go attack the cancer bad guys like Pac Man.
I'm recovering now and doing well. Fairly fatigued and aching, but well medicated. My mind is racing with excitement that all is very real now and that I will be receiving my first chemo treatment on Tuesday. Perhaps not a thing I should look forward to, but to me it is getting on with healing despite the high price. I'm ready to get on with it. In the meantime, I'm enjoying my short haircut for awhile and collecting beautiful scarves from my beautiful friends.
Of course I was very anxious the night before and didn't sleep very much. Full of adrenaline all day!
From beginning to end, the staff and doctors were wonderful. Leaving my worries to rest. We arrived at the hospital and were received in caring hands. We will stay put with this team for now. Trying to go to other facilities for the sake of location or convenience was a mistake. Quality care is priority, no matter the sacrifice. I am fighting for my life and what that means, so we must keep that in mind. The children will adjust. Eventually, all that is inconvenient will become routine. The strain it puts on my family and friends will become a normal day and we will all come through to the other side. I must keep learning to let go and be cared for. A difficult adjustment for such an independent woman as I am. Humbling.
Here I am, getting ready to have a Central Intravenous Catheter installed so that I may proceed with chemotherapy as aggressively as needed. It's amazing what they've come up with now. I'm glad to be at this point in medicine that I won't need to be stuck with needles constantly once or twice a week. This device will be able to stay indefinitely. It must be surgically removed, so hopefully by the time I don't need it, it would be time to celebrate.
It is a valve that has been surgically placed below my collar bone with a catheter inserted into my major vein leading to my heart. Each chemotherapy treatment will be done by placing a special needle into that valve just below my skin. This prevents wasting of veins and collapsing/deterioration. It appears as a large lump under my skin with a 2" scar from the surgical incision. I'll take a lump over bruised arms!
Telling my boys about it was an adventure. As far as they are concerned, Mom is part Bionicle with a new "button". The doctors can give Mom medicine into the button which will go attack the cancer bad guys like Pac Man.
I'm recovering now and doing well. Fairly fatigued and aching, but well medicated. My mind is racing with excitement that all is very real now and that I will be receiving my first chemo treatment on Tuesday. Perhaps not a thing I should look forward to, but to me it is getting on with healing despite the high price. I'm ready to get on with it. In the meantime, I'm enjoying my short haircut for awhile and collecting beautiful scarves from my beautiful friends.
Wednesday, June 10, 2009
Off to 1st Surgery
Off and running to my first surgery....yes, really 1st. Never had any surgery in my life, now I'm getting my first outpatient surgery this morning. It's getting very real now. I'm very anxious today. I'll be under the best knife, but still very nervous...
Here's what I'm getting done: (not by this office, but the website had a good description).
http://www.markfuscomd.com/port.htm
and
http://en.wikipedia.org/wiki/MUGA_scan to see how my heart will hold up to the chemo drugs.
Here we go.....
Here's what I'm getting done: (not by this office, but the website had a good description).
http://www.markfuscomd.com/port.htm
and
http://en.wikipedia.org/wiki/MUGA_scan to see how my heart will hold up to the chemo drugs.
Here we go.....
Tuesday, June 9, 2009
Hair Party
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| Hair Party |
Click picture above to view album
Time to cut the hair short. Getting ready for the chemotherapy and donating my long hair before it's too late. Gonna enjoy this for awhile, and who knows, after I loose it and it grows back, it may be a new look to keep!
Back on track
Back on track with a new oncologist and amazingly chemotherapy is scheduled already the same day I meet her. No messing around. No waiting until July to get started like this local place! Hopefully things go much more smoothly. It will be a haul however, nearly an hour away. I guess we just keep figuring out how to do everything as we go along. We have great friends and support. It's difficult to let others help me. New territory! But I'm trying because I know soon I need to focus my energy on healing as my treatment begins. I must let go in order to take on new things. It will all be stressful and tiring on my friends and family, but I know they love me and they have chosen to journey this with me. In the grand scheme, all of their presence in my life and who they are keeps me going. The comments and notes are a positive force that sustains my attitude.
Monday, June 8, 2009
Two steps forward, one step back
Well, after such a wonderful and memorable evening last week, the next day was my first "welcome to HELL-th care". We had a horrible experience with a local outpatient facility. The real downside is that we witnessed a habitual function and attitude with staff that was very negative and stressful. This was to be a facility that would be a 10 minute drive to get my weekly chemotherapy. We will not be returning. My dignity and privacy was neglected. No patient need experience the series of events that I went through there. The level of care was below standard along with basic patient rights violated.
Despite a very frustrating and stressful day, we plan to move on even though it will push back my treatments now that we have to change. It will be more difficult managing daily life traveling further for chemotherapy treatments. But we always find a way. In the beginning I will need chemo once a week for 18 weeks. My treatments last around 2 or 3 hours. I will also need blood work which will make it 2 times a week we will be traveling to a clinic.
On Wednesday, I go in for minor surgery to place a central IV catheter which will allow me to get the high volume of IV treatments without collapsing veins. I can only use my right arm for IVs, as my left arm is affected by the cancer. At this point I am uncertain when I will start chemo as we are arranging care elsewhere. Hopefully ASAP.
Thursday, June 4, 2009
We had a nice but brief date night last night. Just decided it was time to celebrate and dress to the nines for one last night before things get messy. While I still have my hair, my figure and a dress to knock my husband dead. So we dropped the boys at friends after school and took off to a place down in the city. It was very nice but not pretentious. Just perfect. A little trendy, a little classy, small, just right. Great food and atmosphere. Just what we needed, to relax, forget. Served African and Mediterranean cuisine. All fresh organic. Just wonderful! My favorite Ketel One martinis done just right. Yet underneath the good food we felt the weight of our very special little occasion. The beginning of a tough journey, hard work...this moment will be what we look back on to make
us smile when we need it. It was an evening that we needed desperately, before it was too late. Truthfully something we haven't done in over a decade. Where does the time go? And suddenly every minute counts. One of the greatest gifts we could receive from our dear friends was simply this time together. Time to focus on each other. Time to be stronger.
us smile when we need it. It was an evening that we needed desperately, before it was too late. Truthfully something we haven't done in over a decade. Where does the time go? And suddenly every minute counts. One of the greatest gifts we could receive from our dear friends was simply this time together. Time to focus on each other. Time to be stronger.The grass needs cut. The dishes are piled in the sink. Weeds are quickly filling my flower beds. But a night out with my husband laughing and feeling, young and healthy for a moment. That's what matters. Here and now.
Sobering Facts
Every 2 minutes, there is a new breast cancer diagnosis.
Every 14 minutes, a life is lost to the disease.
Over 40,000 people will die this year; about 400 of them will be men.
85% of all diagnoses have no family history.
1 in 8 women will be diagnosed with breast cancer.
Breast cancer is the leading cause of death in women between ages 40 and 55.
Every 14 minutes, a life is lost to the disease.
Over 40,000 people will die this year; about 400 of them will be men.
85% of all diagnoses have no family history.
1 in 8 women will be diagnosed with breast cancer.
Breast cancer is the leading cause of death in women between ages 40 and 55.
Tuesday, June 2, 2009
Getting ready
4 days and counting 'till the "hair coming off party". A dear friend of mine who's been also my hair stylist for the past 16 years is coming up to give me my new short hair. Making sort of a girl's day party out of it with good friends. I'm taking it off before chemo does and donating it. I figure why not? It's coming out anyway, why not beat it to the punch. My boys are geared up for it! They say they'll miss my hair but I'll still be beautiful anyway.
I start weekly chemotherapy soon. I have stage 3 and grade 3 cancer, which basically means they're going to try and slow it down with chemo before they do any surgery. My energy is supposed to go way down on top of the lovely side effects.
My energy has already taken a nose dive in the past several months. My weeds are growing! My kitchen is not done ( I started remodeling it over a year ago). Oh well. On to more important things. They just serve as reminders how much I used to do. But they also motivate me.
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