I hit the "funny bone" of my knee on the edge of a chair. It was the usual funny bone incident, that wierd pain resonating throughout my leg until slowly dying out. After two days the resulting bruised feeling went away and I forgot about it. When it it came back a week later I was jumping to conclusions - bone cancer. I remember having trouble with this knee before because my Step Aerobics teacher told me to find an alternative exercise.
I'm wondering if my PET scan missed something. A friend told me her doctor doesn't trust the Prescott Valley PET scan which is where mine was done. So I'm wondering if its the machine or the radiologist who reads it he doesn't trust. Anyway I'm not really worried except about the fact I may be analayzing every normal ache and pain which have been increasing with the advancing years.
Its an unfamiliar paranoia for someone who, other than breast cancer, is the picture of health. I'm hoping after a few clear reports the tension will ease. I noticed a blogging headline on this topic a while back but didn't realize its pertinence until now. Its all part of the journey. How else to understand the whole cancer picture but to experience it?
The antibiotics I took for my tissue expander rejection caused an intestinal problem which was zapping my energy so now I'm taking antibiotics for the antibiotic reaction. My surgery wound is fully healed. At last I feel great - almost normal except for my knee. Now I'm ready to finish my chemo, 7 weeks if radiation.
My radiologist nixed the idea of trying the expanders again before he gets his job done. What that means for me as far as reconstruction is concerned, is I will wait 6 to 12 months and then have reconstruction surgery using the latissimus dorsi muscles from my back. Whew! I get worn out thinking about all this. One day at a time.
Just to keep life interesting Shoyei has just been scheduled for surgery Jan 21st to have his gall bladder removed which is right between chemo session 6 and 7. It's outpatient surgery but it's sounds fairly invasive so I'm sure he won't be very comfortable for a while. Hopefull next year we can look back on this time of challenges with gratitude for good health!
I'm so blessed to have both of my children with me for a week and my wonderful son-in-law here as his job permits. They are a fresh breath of air at a time like this! Life is good!
Showing posts with label reconstruction. Show all posts
Showing posts with label reconstruction. Show all posts
Wednesday, January 28, 2009
December 4th 2008, Hot turkey
Phoenix for doctor day. We met with Dr. Kato(my oncologist who replaced Dr. Thakker when he quit). We received a letter from Dr. Kato's group informing us that Dr. Kato has given his notice and that I was being assigned to doctor number 3! I couldn't have written this script. Do you need an outline? However, it turns out I get to move with Dr. Kato to his new practice. He's taking 5 of their people with him including my chemo nurse! I guess this practice has chased off 3 of the younger doctors interested in the latest chemo movements over this past year. They're not into new ideas. Dr. Kato is waiting on my healing before he resumes my last 3 chemos.
On to Dr. Mosharrafa. He was so wonderful and apologetic and compassionate. He told me he felt devastated by what had happened to me. I got my drains out(and never have to have them again - and believe me that's a blessing). We headed to Phoenix with my intending to go cold turkey - no pain meds for the drain removal torture but Dr. Kato said why? This was no time to play "hero". Turns out the pill Nazi came prepared. I'm sure it helped but geez man it still hurt!
Anyway, I was released from all my bandaging which with the 3 feet of tubing felt like what I imagine a corset might feel like. So glad to live beyond that era.
We could see that Dr. M had closed up all but one small remaining wound which we will let heal now. Shoyei and I left feeling really good about him and so relieved to have another chapter behind us.
Our third stop was to visit Bonnie at "Tina's Treasures". If you know anyone going through this you must tell them to visit Bonnie. She's been through the whole ordeal and is loving, compassionate and funny! I left with some new (prosthetic) lingerie to help me feel a little girlier again.
It was a good day.
On to Dr. Mosharrafa. He was so wonderful and apologetic and compassionate. He told me he felt devastated by what had happened to me. I got my drains out(and never have to have them again - and believe me that's a blessing). We headed to Phoenix with my intending to go cold turkey - no pain meds for the drain removal torture but Dr. Kato said why? This was no time to play "hero". Turns out the pill Nazi came prepared. I'm sure it helped but geez man it still hurt!
Anyway, I was released from all my bandaging which with the 3 feet of tubing felt like what I imagine a corset might feel like. So glad to live beyond that era.
We could see that Dr. M had closed up all but one small remaining wound which we will let heal now. Shoyei and I left feeling really good about him and so relieved to have another chapter behind us.
Our third stop was to visit Bonnie at "Tina's Treasures". If you know anyone going through this you must tell them to visit Bonnie. She's been through the whole ordeal and is loving, compassionate and funny! I left with some new (prosthetic) lingerie to help me feel a little girlier again.
It was a good day.
December 2nd 2008, Recovering Anew
Pain is an odd thing and different for everyone. It seems to be all about the nervous system. I am a lot more comfortable today even though I feel as if I’m starting over with both breasts assaulted, tight bandaging and drains. No bathing for three days. But the extreme pain of the right expander and the discomfort of the leaky drain are gone. I have numbness on the breast area but so far it has been a blessing. My doctor says feeling will return slowly. True?
I have odd nerve feelings down my right underarm all the way to my wrist – the lymph node chain line I assume. The expanders were never supposed to be filled to start with. Seeing the thinness of my skin my doctor felt it would prevent the expanders from pushing through by being filled enoucgh to round the edges. In fact, he told me at my initial consultation that the chance of rejection from partially filled expanders was too risky and he didn’t subscribe to it. So imagine my surprise when I awoke to just that. In hindsight, I feel he should have chosen to close me up and plan on the alternative journey I am now on. Oh well, God has been busy working on me. I am not much of a sit still person so it has been a good time for me in that regard.
I have odd nerve feelings down my right underarm all the way to my wrist – the lymph node chain line I assume. The expanders were never supposed to be filled to start with. Seeing the thinness of my skin my doctor felt it would prevent the expanders from pushing through by being filled enoucgh to round the edges. In fact, he told me at my initial consultation that the chance of rejection from partially filled expanders was too risky and he didn’t subscribe to it. So imagine my surprise when I awoke to just that. In hindsight, I feel he should have chosen to close me up and plan on the alternative journey I am now on. Oh well, God has been busy working on me. I am not much of a sit still person so it has been a good time for me in that regard.
December 1st 2008, Emergency Surgery
Another surgery complete. Today's 45 minute surgery ended up being 2 hours which had my husband a bit freaked out. Turns out my body was rejecting both tissue expanders. At least my pain was justified! And once again I have the pleasure of tubes and drains and the anticipation of their breath taking, literally, removal. Either my sense of humor is returning or I'm losing it, but this strikes me as funny. Ladies, did the shocking pain of childbirth stop you from baby #2? Why not? It's sort of fascinating.
Today's semi-emergency procedure was at St Joseph's Outpatient Surgery Center in Phoenix and it was first class - no complaints. My experience was an A+. I'm not really planning on a personal analysis of all local hospitals but I've experienced 4 now so feel free to contact me for my opinion.
My sense of humor is gradually returning - gosh I've missed her.
What I learned during this round? That even when I wanted to turn my back on God, He stuck to me like glue and didn't hold my weakness against me. I am humbled
Today's semi-emergency procedure was at St Joseph's Outpatient Surgery Center in Phoenix and it was first class - no complaints. My experience was an A+. I'm not really planning on a personal analysis of all local hospitals but I've experienced 4 now so feel free to contact me for my opinion.
My sense of humor is gradually returning - gosh I've missed her.
What I learned during this round? That even when I wanted to turn my back on God, He stuck to me like glue and didn't hold my weakness against me. I am humbled
November 28th 2008, Rejecting Expander
To say one has not suffered enough sounds martyrish and to some foolish. But who has not faced some great challenge and later realized the value of experience in relating to new challenges.
So, here I am. During this morning's dressing change, my husband was clearly alarmed and called the doctor to report he could see the expander. I was horrified. Monday I will go back into surgery to remove my right expander. I have in the short span of a few hours cried, felt self-pity, been angry and blessedly feasted on words of Hope. It is one more stage to pass through. It will add months(3 I think) to my total treatment. Months to learn more and hopefully see God at work.
When I was first diagnosed with this cancer, I understood there was opportunity in the danger(Chinese for crisis). But here alone on the high seas of the storm it is often difficult to keep that perspective. At the end of each day though, I'm simply happy for another day even of trials. Another opportunity to tell you if you are receiving this email it is because I love you and am grateful for the chance to tell you so.
So, here I am. During this morning's dressing change, my husband was clearly alarmed and called the doctor to report he could see the expander. I was horrified. Monday I will go back into surgery to remove my right expander. I have in the short span of a few hours cried, felt self-pity, been angry and blessedly feasted on words of Hope. It is one more stage to pass through. It will add months(3 I think) to my total treatment. Months to learn more and hopefully see God at work.
When I was first diagnosed with this cancer, I understood there was opportunity in the danger(Chinese for crisis). But here alone on the high seas of the storm it is often difficult to keep that perspective. At the end of each day though, I'm simply happy for another day even of trials. Another opportunity to tell you if you are receiving this email it is because I love you and am grateful for the chance to tell you so.
November 26th 2008, Dr. Report
Saw the doctor and he drained 240 of the 300cc of saline from my right side where the expander was just about to bust through! Gross - it's like Alien(the movie)!
I feel 1000% better!
I feel 1000% better!
November 8th 2008, Recovering
The first week few days home from mastectomy surgery aren't bad. Medication controls the pain. Nine well placed pillows prop me and I am, surprisingly, able to sleep on my back. Two of these pillows are little flannel hearts that fit comfortably under my armpits to prevent chafing. God bless the hands that sewed them. I am wearing an ingenious garment. It is a camesole of the softest cotton knit with thoughtfully constructed interior pockets to hold drain bulbs, tubes and prosthetic breasts(which are empty). The bulbs attach to tubes running from each under arm acting as suctions siphoning off body fluid until the lymphatic system kicks in and takes over. Twice a day my husband removes each bulb and squeezes the murky contents into a measuring cup to record the amount collected. He manages this task with great attention to detail and a deft touch for my comfort. It's the way he approaches everything. One day as he was absorbed in these ministrations my mind flashed back 35 years ago- I was a flight attendant and my husband was the captain of our DC10. Upon descent into to Boston's Logan Airport we lost an engine. The older flight attendants assured us we had nothing to worry about, Captain Yamauchi was at the helm. His reputation as a skilled airman dispelled all fear and he gently set our big old bird down, passengers none the wiser. These are the same hands that care for me now I am thinking.
We saw my plastic surgeon three days ago. He removed the bandages and we got our first look at my massacred chest. From my vantage point, I can't see too much which I'm sure is a blessing. I prefer to investigate later in private. For now, looking down I can see the outline of the tissue expanders creating little malformed mounds. I check out my husband's expression. He wavers between curiosity and horror. I love him for trying to control this transfer of thoughts to expression but his heart is clearly broken for me. We are entering a whole new kind of intimacy.
Dr. Mosharrafa points to a place on my left, heretofore healthy "breast", and explains,"this is a burn where Dr. Corn was cauterizing" outlining 4 square inches and two 1/4" holes of skin damage. Its said matter-of-factly and I'm too stunned to respond. Considering the rest of the devastation, it seems to makes little difference now. I'm not up to assessing this new information and neither is my husband. We are two weary warriors and this information is more than we can deal with right now.
There is a lot more pain the second week because twice a day Shoyei has to change my dressings. I realize now that I'd never thought this far out. It's a nasty job and seems too much to ask. But this too he does with love. Did I mention he was a child prodigy - he played piano with the San Francisco symphony, he played for the king and queen of Norway. He has a feather touch and my skin is numb anyway so I can't feel the wiping or stinging. Unconvinced, he continues his gentle ways. What I feel a is a deep aching pain that has me sucking in air and concentrating on my diaphragm breathing.
This new regimen has me doubling my pain pill intake but Shoyei's stingy with my meds. For one thing he's afraid I'll become addicted. Yesterday afternoon he tried to get me to hold out between doses. "On a scale of 1 to 10, how would you describe your pain?". Like the hospital nurses would ask. I tell him I am a 4(10 being childbirth). I know perfectly well he doesn't want me to suffer. He plunks a heavy naturopathic tome on my lap and points to the paragraphs he wants me to read. It states that narcotics(i.e. my Percoset pain pills) may actually contribute to the spreading of cancer. Two of my doctors have already poo pooed this. I feel caught in the battle between traditional, heavily documented medicine and the naturopathic approach which sounds good but what about pain? Right now I vote for the route of pain relief. I've become hesitant to call Shoyei for a pill only to have him look at me like a junkie. My prescription says 'take 1 to 2 every 4 hours as needed for pain'. I take 3 to 4 a day but my nurse Ratchet would like to see that down to 1 or 2. So I guess it's obvious I'm growing grouchier by the minute.
Finally we agree to call the doctor who tells us both if I hurt, I get a pain pill. But they also agree to alternate my medication between Percoset and Valium, the latter is a muscle relaxant. Perhaps muscle cramps are a partly responsible for my pain. I'm happy to report, 24 hours later, it's already making a difference.
There has been a wonderful highlight to this week. We have been blessed with meal after meal provided by some women from my church. Flowers and gifts and cards have helped me through some of the toughest days. I keep reminding myself how very blessed I am.
Kathleen
"O Joy that seekest me through pain,
I cannot close my heart to Thee,
I trace the rainbow through the rain,
And feel the promise is not in vain,
That morn shall tearless be."
-George Matheson
We saw my plastic surgeon three days ago. He removed the bandages and we got our first look at my massacred chest. From my vantage point, I can't see too much which I'm sure is a blessing. I prefer to investigate later in private. For now, looking down I can see the outline of the tissue expanders creating little malformed mounds. I check out my husband's expression. He wavers between curiosity and horror. I love him for trying to control this transfer of thoughts to expression but his heart is clearly broken for me. We are entering a whole new kind of intimacy.
Dr. Mosharrafa points to a place on my left, heretofore healthy "breast", and explains,"this is a burn where Dr. Corn was cauterizing" outlining 4 square inches and two 1/4" holes of skin damage. Its said matter-of-factly and I'm too stunned to respond. Considering the rest of the devastation, it seems to makes little difference now. I'm not up to assessing this new information and neither is my husband. We are two weary warriors and this information is more than we can deal with right now.
There is a lot more pain the second week because twice a day Shoyei has to change my dressings. I realize now that I'd never thought this far out. It's a nasty job and seems too much to ask. But this too he does with love. Did I mention he was a child prodigy - he played piano with the San Francisco symphony, he played for the king and queen of Norway. He has a feather touch and my skin is numb anyway so I can't feel the wiping or stinging. Unconvinced, he continues his gentle ways. What I feel a is a deep aching pain that has me sucking in air and concentrating on my diaphragm breathing.
This new regimen has me doubling my pain pill intake but Shoyei's stingy with my meds. For one thing he's afraid I'll become addicted. Yesterday afternoon he tried to get me to hold out between doses. "On a scale of 1 to 10, how would you describe your pain?". Like the hospital nurses would ask. I tell him I am a 4(10 being childbirth). I know perfectly well he doesn't want me to suffer. He plunks a heavy naturopathic tome on my lap and points to the paragraphs he wants me to read. It states that narcotics(i.e. my Percoset pain pills) may actually contribute to the spreading of cancer. Two of my doctors have already poo pooed this. I feel caught in the battle between traditional, heavily documented medicine and the naturopathic approach which sounds good but what about pain? Right now I vote for the route of pain relief. I've become hesitant to call Shoyei for a pill only to have him look at me like a junkie. My prescription says 'take 1 to 2 every 4 hours as needed for pain'. I take 3 to 4 a day but my nurse Ratchet would like to see that down to 1 or 2. So I guess it's obvious I'm growing grouchier by the minute.
Finally we agree to call the doctor who tells us both if I hurt, I get a pain pill. But they also agree to alternate my medication between Percoset and Valium, the latter is a muscle relaxant. Perhaps muscle cramps are a partly responsible for my pain. I'm happy to report, 24 hours later, it's already making a difference.
There has been a wonderful highlight to this week. We have been blessed with meal after meal provided by some women from my church. Flowers and gifts and cards have helped me through some of the toughest days. I keep reminding myself how very blessed I am.
Kathleen
"O Joy that seekest me through pain,
I cannot close my heart to Thee,
I trace the rainbow through the rain,
And feel the promise is not in vain,
That morn shall tearless be."
-George Matheson
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