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I was treated at CTCA and the majority of their patients fly in and out for treatment. I was close enough to drive but I did fly from IL to FL and back to IL for the birth of a grandbaby midway through treatment. I didn't experience any problems with my port whatsoever - and my oncologist knew I was flying. I left after my afternoon treatment on Thur and while he was against my skipping a treatment on Friday, he did not object to my flying. I was back on Monday for treatment.
Diana
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On Dec 13, 2009 12:14 PM lovingspouse4 wrote: Dearest Debralynn,
My heart goes out to you, I hear your pain, frustration and agony ~ wish I had answers, but I don't. No human does at a time like this. Only our Lord Jesus does: He knew within hours the physical pain He was about to suffer. Even worse, He knew the burden of everyone's sin would cause The Father Himself to seemingly abandon Him. Undoubtedly Jesus knows what it's like to second.third " target="_blank" rel="nofollow">second.third "" target="_blank" rel="nofollow">http://second.third " target="_blank" rel="nofollow">second.third " " target="_blank" rel="nofollow">second.third " target="_blank" rel="nofollow">second.third "" target="_blank" rel="nofollow">http://second.third " target="_blank" rel="nofollow">second.third " target="_blank" rel="nofollow">second.third " target="_blank" rel="nofollow">second.third .&.thensome guess decisions~ He, The Father, and The Spirit's Great Plan of Salvation. With their ability to know the end from the beginning, He knew the plan was perfect, the ONLY WAY! But here He was in a garden, His human friends useless, His suffering so real, His soul so overwhelmed with sorrow to the point of death, that bloody sweat poured from His body onto the ground....
I believe all three of the Trinity were second.third " target="_blank" rel="nofollow">second.third "" target="_blank" rel="nofollow">http://second.third " target="_blank" rel="nofollow">second.third " " target="_blank" rel="nofollow">second.third " target="_blank" rel="nofollow">second.third "" target="_blank" rel="nofollow">http://second.third " target="_blank" rel="nofollow">second.third " target="_blank" rel="nofollow">second.third " target="_blank" rel="nofollow">second.third .andthensome guessing: Father, if You are willing, take this cup from Me, yet not My will, but Thine be done.
Within minutes of His death, Jesus cried out, "My God, My God, why have you forsaken me?" Did the Father forsake Him? Of course not ~ just as He has not forsaken you or your beloved husband. I believe you are in the very heart of God's plan: even your doubts, your fears, your feelings of abandonment..... Jesus holds out nail scarred hands.....He's been there. The Father never turned away, even through Jesus felt like He did........ May the Holy Spirit comfort you now!
I'm now awake, praying for you....
Diane
Hello Debbie -
I am a cancer survivor who lost my first husband to lung cancer 18 ys ago so I have experienced both roles. I agree with those who have said there is never enough time - we would always like more time with our loved one. All caregivers are entrusted with a tremendous responsibility - but one we accept because of the great love we have for our loved ones. Even though we know from birth that Earth is just our temporary home and that a far more beautiful home is awaiting us - one where we will again see loved ones who went before us - it never seems to be enough time. Debbie, please know that the responsibility for your husband's life is in God's hands rather than yours. Know that you have done everything you are humanly able to do but God is in control.
The below is something I copied from Cancer Compass several months ago to send to the wife of a friend who was coming to the end of his journey in his fight against a reoccurrence of pancreatic cancer. For me, it was a reminder that when coming to the gait at journey's end, being there for your loved one while he/she passes into God's hands is your final gift to them. I hope it will give you some comfort in the days ahead. I also relied on the message of "Footprints" during my journey as a caregiver to my husband and also my own treatment. As we all know, God promises us eternal life in Heaven rather than on Earth.
The Caregiver’s Journey
The caregiver has given time and love in ways that people see and respect, even if they do not fully understand. But the
caregiver has received "gifts" from the dying person: trust and love of a kind rarely experienced, and the dying experience itself. It is all of this and something more that the caregiver receives. In trying to explain what it is about, one man offered the following analogy that he referred to as "The Journey."
Imagine helping a friend on a journey to a remote monastery perched on top of a mountain. As you begin your trip, the path is fairly clearly marked and the goal easily seen in the distance. But as you approach, the monastery is often obscured by the tops of trees in the forests through which you pass. And you say " if only we could get out of this woods, we would be able to see the monastery again and see where we're going." And as you continue the climb, the path fades and much is accomplished by guesswork. You call on your friend for help. After all, this is his trip and he should know what he's doing. But he becomes older and weaker and relies more on you moment by moment.
Things get worse. You lose the path and you are tired and hungry. But, he cannot proceed alone and you can't leave him on the mountain while you return to the warmth and safety of home. So, you find a new reserve of strength, enough for both of you, and you continue up the mountain, for now it is your journey, as well. You look at yourself anew and find that you have grown older, become more mature like your friend, and you accept this as part of the mutual trip. And in accepting your role as guide you find that you are guided, that your friend, whose legs have crumpled beneath him by now, offers you wellsprings of courage and hope. You drink deeply, for you realize that if either of you are to make it to the top, it will need both of you guiding and supporting the other in ways constantly changing and unimaginable.
One day when you least expect it, the heavy cedar gates of the monastery are suddenly dead ahead. The trip had become the whole purpose, it seemed, and the monastery forgotten. But there it stands: Your friend's objective has been reached The door opens to admit your friend and, as if you had performed the ritual many times before, you hand your friend over the threshold. The door closes, and you stand there numb, alone, bewildered.
Out of habit you continue walking. It doesn't seem to matter in what direction, for each of the possible paths lead back down from the mountain.
The trip down seems easier than the trip up was. The mountain holds few surprises, now, and there is ample time to sit and ponder before reaching the valley below. And somehow in reviewing the trip with your friend, its moments of desperation and fear are overshadowed by the times of giving and accepting, of sharing and journeying together. Memory of the monastery fades and in its place stand crystal images of points along the upward trek. There was the time you picked him up and carried him across the rocks when his strength failed. And there was the time when you slipped and lost your grasp, but he held you up and supported you with the power of his mind. There was something special in those moments, something, which if you could string all of those images together in just the right order, that then, maybe then, you would understand.
As it is, you return to the valley a different person, quieter and stronger, knowing only that you have been a part of something .... holy. This friend shared with you his most personal possession, his death. And though you can't quite comprehend its true value, you find yourself hoping that you will have the ability to fully experience and share your final journey with another wayfarer to whom you can pass on crystal images.
Deep gratitude and celebration are the order of the day for those of us who are called to assist in this challenge. The suffering, remember, is found only in our refusal to let go, only when we refuse to go through the pain and move to the other side. We get through by going through. The rewards are wonderful: the joy and blessings that come from extending the self beyond its own comfort zone; the knowledge we gain of life and death; the love that is lost and found again on a higher plane; and the areas of awareness that are opened. Grief is a healing process to be welcomed and not feared, for when it is allowed to go its own course unobstructed, it will fill with wonder the void that the loss created.
Debbie - I know that God will be with you and your husband as He walks with you in the days ahead. God Bless you both.
Diana
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On Dec 13, 2009 1:05 PM babyvia wrote: Diagnosed in September this year and was told "Fatal." Having hard time dealing and was told Thaldamide and Steroids. I still have not taken anything, but taking Zeolite. Asked for second bone marrow biopsy (will have this week). Oh, and found out after all this time Stage 2. I feel I,m being foolish, but I feel fine. No symptons. Started taking multivitamin again and am trying to stay away from junk food, which is what I usually do anyway. I cn go on and on; however I think I,m ready to accept diagnosis. Also, my life is so upside down now and have not told many people. I want to wait until I'm sure I can handle all the reactions, etc. This is a mess with capital MMs. Thanks for listening.
Hi babyvia
It is a wonderful idea to have a second bone marrow biopsy hopefully with a different doctor. I was given a 50% chance of beating my cancer when I went to my first oncologist (at first, I focused on the 50% of nonsurival rather than 50% chance of survival). Then I went to Cancer Treatment Center of America for a second opinion. Quite honestly, the initial reason I went was because my husband read about a type of radiation that they have - TOMO Therapy - that had worked well with my type of cancer (oralpharyngeal - cancer of the tonsil). One of the first things I saw when I walked in was a sign that said "If God didn't give you an expiration date why should we!" That was also their attitude when caring for patients. I met many people who had been diagnosed with terminal cancers 'back home' and came to CTCA for treatment. One person I got very close to was diagnosed back home with a reoccurrence of pancreatic cancer. Dan recently passed away but CTCA gave him an additional 27 months which my doctor told me was almost unheard of with a reoccurrence (and it had already spread when discovered). Not only an additional 27 mo but 20 mo of quality life - and two more Christmas holidays (first med center told him he wouldn't live to see the first Christmas - let alone two and almost three). He was also present when his son got married which was a blessing.
I am 63 yrs old and the one important thought I keep in mind at all times (moreso now after my diagnosis) is something my grandmother used to say - "Everyone's time on Earth is limited - it is what we do with that time rather than how much time we spend here". I am now in remission but work overtime daily to make a difference in others lives so that if I do have a reoccurrence (which is common with my type of cancer), there is something to show for my time here. Try to focus on living life to its fullest today rather than what may come down the road. I know how easy this is to say compared to actually doing it but I pray for everyone living with cancer daily - that God walks with everyone. I love "Footprints" and have copies throughout my house (used to have only one copy on the wall). While undergoing treatment, it was so comforting to KNOW that when life got really rough that there was only one set of footprints - God's - as He picked me up and carried me until I could stand again. I will remember you in my prayers - that God carry you during any time in the days ahead that you need Him to.
Diana
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I was told specifically not to use the gel you buy in a tube/bottle at the pharmacy so I asked about gel from an aloe plant and was told that could be used. I did use it with success. Also the Biafine later on.
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I'm sorry to hear that your sister had a bad experience but if you are referring to the Cancer Treatment Center of America in Zion, IL, I have to assure you, they are NOT a farce. I went throught treatment there 2 1/2 yrs ago and am cancer free today thanks to the many wonderful doctors, nurses, technicians, and the entire staff. On one particularly bad day, even the cafeteria worker saw me with my head resting on a table and came to me to ask if there was anything she could do for me. Since your sister is already in treatment elsewhere I won't suggest that you call CTCA again and talk to someone different. There obviously was a breakdown in communication somewhere. Please do not take it for granted that it was with CTCA and not your insurance company who caused the breakdown. CTCA always handled all my insurance and I had no problems. If the insurance company would pay for treatment, why would CTCA refuse to see a patient who has insurance? I assure you, my husband and I are far from wealthy (retired teacers) and have Aetna insurance through the schooi district. Everything they say on their commercials I found to be 100% accurate - in fact, I have told many people - what you see on TV is what you get. Many of the doctors and nurses are cancer survivors and understand what we are going through as they have been down the road also. I met many patients whose doctors had given up on them - but CTCA has a motto - "If God didn't give you an experiation date, then why should we." I can understand your frustration but while you have nothing to thank CTCA for, I owe them my life and I am not the only one.
Diana
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On 10/12/2009 grinny555 wrote: I, like everyone else, am seeking answers to my questions. Once anyone hears the word cancer, the worst is automatically assumed. In sharing our stories of thyroid cancer with each other, we can put our fears to rest, answer the questions we cant seem to find answers too, and most of all find support and comfort in knowing that there is other people out there experiencing what we each are experiencing. I would love to read everyone's story about thyroid cancer....what lead you to seeking medical advice, how you found out, what stage and type of cancer you have/had, and how long ago, etc. For anyone dealing with recurrence, please include these details also. Maybe in sharing all this information, we can find out how are individuals situations differ or have simularities, and how to deal with the emotional and physical demands of this. Thank you!
Hi I had a different type of cancer but if you go to the upper right corner and type in thyroid cancer, you will find many stories - going back for a long period of time - from people who are living with it - patients and caregivers. Cancer Compass is all about sharing stories, knowledge and supporting each other. I had a patient who was two years post treatment walk me through my treatment - telling me what to expect and being there to support me throughout. I wish you the best - Cancer Compass is awesome. Diana
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On 10/14/2009 cubeinthesky wrote: Hello all, I posted a few days ago about my Dad's recent GBM IV dx, and the responses I've gotten were great for me and my Mom, though my Dad still seems pretty morose. I've got so many questions, and as I'm waiting for my brain tumor books to come from Amazon I thought I'd come here. If you could answer any, or all, it would be so helpful. You are all amazing, strong people! - My Dad says he's going to fight but he just sits and stares at the T.V all day, and he won't talk to us about how he's feeling or what he's thinking about. We feel like he's shut down a little. He's closing his business, which he's owned 10 years, because he said 'it doesn't matter anymore.' Is this normal? We keep telling him everyone who lives longer has a positive attitude... but then again he only found out 5 days ago. Did your loved ones go through this period? -How serious is every headache, dizziness? He had a dull headache tonight, on the opposite side of where the removed tumor was and we panicked... we don't know when it means something serious or not. He didn't have headaches before the tumor was discovered, he just randomly collapsed with a seizure. -What does Duke do differently? Everyone talks about Duke as if it's the only survival option, and we are definitely looking into it... we're wondering what they did differently for you guys than your local oncology departments? Thanks in advance everyone, I really appreciate it!
Hi My first reaction when reading your post was you have come to the right place - and once I read the responses, they were as I expected. I had a different type of cancer but I have read the posts for all types of cancers and the people on this website are amazing - informed and compassionate - and those who are living with GBM are even more amazing. My Masters was in a field that entailed intense studies in neurology and I quickly learned the brain is amazing! FMRI's show how compartmentalized the brain actually is - there is even a specific area in the brain that lights up when we hear proper names versus other nouns. Speech, motions, hearing - all have their own little compartments. There is an "opposite" effect - simply said, what occurs in the left hemisphere shows up on the right side. Whatever occurs in the right hemisphere shows up on the left side. It would be natural to "feel" pain on the opposite side of his tumor/surgery but I totally agree with those who suggested you let your physician's nurse know what is going on though. Even a little matter may be important while something that sounds more serious may be expected. They can make the right determination - and as others have said, it completes your father's medical history. As for your Dad shutting down, I did the same as your father. My tremendous husband's response was to get on the internet and research - research - research once I was diagnosed with cancer. I did NOT want to hear about it - at first. I remember telling him "Find out - gain information - but keep it to yourself for right now - please!" I just needed time to come to terms with it - to accept that I had cancer. I can agree with the gentleman who said that "being a man" contributes to it though. Men are taught to take care of women (the weaker sex?) and often believe they cannot show emotions. My own father had a very very very difficult time of it when we were told my mother was terminal - that he had no control over her well being. I wish your father, mother, AND you well. Books can get very technical and while informative can appear less than supportive - people on Cancer Compass are living with it on a daily basis. You have many on here who have been doing so for years - and have educated themselves over those years - and will be there for you to share their knowledge AND their experiences. The caregivers and patients become family - 99.9% you can trust - while .1% offers a little less than helpful information BUT they are always there for you. Diana
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On 10/10/2009 jjittery wrote: Hi all: I've recently developed a tonsil cancer concern due to dull lingering pain in the back of the throat above and behind the tonsil. This has been going on for weeks to months. What is actually up there? The pain does not seem to be in the tonsil itself. My doc ordered a neck MRI which showed nothing. He also did two different scopes throught he nose and sent me on my way. My lymph nodes are fine and my tonsils are the same size approx. What does the normal MRI tell me? If this were cancer causing the pain, wouldn't there be some tumor evidence? What else could cause such lingering relatively dull pain? Does it make sense to watch and wait for a while to see if the pain resolves, or should I be doing something else? BTW, I've never smoked, moderate drinker. thanks
I can only relate my own experience. I was also a non-smoker and non-drinker. I had NO pain and my left tonsil was extremely enlarged (took up half my throat) while the right one was a normal size. I was told by my ENT that when one tonsil was that much larger than the other, it is generally cancer. The scoping through the nose enables them to get a clear view of the nose and throat area. If you have gone to one ENT you might go to another ENT for a second opinion but if he/she finds nothing as well, you can calm your fears. I have heard from many others on Cancer Compass that they also had no symptoms other than one enlarged tonsil and extreme fatigue. As for what else it can be, that is a question to ask your doctor. Diana
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Hi Kim I am also from FL and Moffitt is a tremendous tremendous hospital - cutting edge research. I personally was treated at Cancer Treatment Centers of America in Zion, IL as I was living there when diagnosed. They are an excellent hospital and I continue to return for my checkups (I am 2 yrs post treatment). You are only 11 days aways from your appointment and I know 11 days seems like a lifetime right now but try to keep busy until then - go to Disney World - Sea World - Busch Gardens - somewhere to enjoy your days. In the meantime, call and ask if Moffit has any cancellations, would they please call you. Remember, everyone who has appointments before you also feel an urgency to be seen. When seeing primary care doctors or ENTs, cancer patients take priority but when seeing an oncologist, every patient is a priority. I will remember you in my prayers - as have others. God knows our fears and answers our prayers. Diana
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