<p>LTS,
I am so happy for your bits of positive news and continue to admire how you are continuing to “get it all done.” At $2M per year, every time you post, it’s a $5,837 gem! ;)</p>
<p>Thinking of you every day LTS.</p>
<p>In awe of your cognitive and emotional strength.</p>
<p>And sending California type prayers to the gods of sea, mountain, meadow, and desert. Each have their role, they say.</p>
<p>
</p>
<p>Absolutely!
We want to keep all the bases covered.</p>
<p>LTS,</p>
<p>I thought you might find this news item that aired a few days ago on ABC news interesting <a href=“Depression Associated With Cancer Often Untreated - ABC News”>http://abcnews.go.com/WN/CancerPreventionAndTreatment/story?id=3777001&page=1</a> they report
</p>
<p>As much as your original oncologist may have jumped the gun on calling in the psychiatrist, he/she is actually, as it appears, in the minority for even addressing the mental health needs of cancer patients. Apparently this is a painfully overlooked aspect of treatment. Recognizing that one needs to address the entire mind/body aspect of healing is a good thing. You are doing a great job of addressing all your needs. Hang in there and know that you have this team behind you.
<em>edit</em>
I was singing along with the m’sheibeirah in my head reading p3t’s post, and then found churchmusicmom’s link. We sing the tempo a little faster, but the melody is the same. Very moving song.</p>
<p>jym626 I do not disagree; I am simply very strongly opposed to the automatic defaulting to drugs and chemical solutions to address the issues. </p>
<p>I do believe very, very strongly in the mind-body connection. </p>
<p>As I have posted, I have been researching nutritional solutions; I wonder if you can imagine to my amazement that MOST of the recommend foods to fight or slow cancer that are recommended by credible sources, I began having cravings for, and eating a lot of, approximately six months ago. Foods that I have never really bothered with much before and for that matter don’t even particularly like. I also turned the house green. No physical symptoms, but, it’s almost as if my mind KNEW something was going horribly wrong on the cellular level and that quality of food intake needed to change ASAP. The doctors told me that this cancer began approximately eight months ago, and, I began to crave, and then eat, these different foods approximately six months ago, and not for any particular reason except that I just wanted to, and did. </p>
<p>And it’s not just the food. I also purchased brand new copper cookware, many cookbooks, etc. If you knew me you would recognize just how weird this is - until about six months ago, I cooked about two or three things. I am not a kitchen person and prior to this time would more or less eat just about anything. We have had a long standing routine in my house - daughter writes the grocery list and cooks; I provide the funds to pay for everything, and clean up the dirty dishes. I have never owned a cookbook in my life and literally read my first one six months ago. We own cookbooks of course but we have them because my daughter asked for them - she uses them and I have never been even slightly interested in them.</p>
<p>At the same time, I also developed a frustration and almost an intolerance for restaurant food, and other poor quality food. Having now had a minute to do a “look back”, it all makes perfect sense and I am now absolutely certain my body was sending very urgent messages to my brain…</p>
<p>I think probably the very best mental health professionals are those that help the cancer patient tap their own sources of knowledge and strength - quite a different strategy, I suspect, than peddling chemicals. </p>
<p>JEM, thank you very much for that post, I appreciate it. I am working my way through it now… </p>
<p>I am very grateful for all of the prayers; as I have total faith in my Chief Physician 
</p>
<p>Thanks to everyone for all of the support and kindness; it matters more than I will ever be able to adequately express.</p>
<p>LTS-
I agree wholeheartedly that the psychotherapeutic approach, especially anchoring onto ones strengths, is a preferred intervention over just throwing meds at the problem. I am just pleased that healthcare providers are beginning to acknowledge the mental health needs of patients dignosed with serious illnesses. It is all to often overlooked, as are all too often the ancillary issues (diet, environment, etc) you are addressing in your wholistic approach to recovery. Go for it. You are in the right.</p>
<p>^^ You know, I have been looking (optimistically) down road, at the issues to come. Where it seems to get really, really dicey-scary is once one does get to a remission position and then it is necessary to begin living life between the scans. I have been reading a lot about what to expect post-treatment, and how quality of life is impacted, especially psychologically. I have spoken to people who are three or more years out from their various cancers and some of them tell me they are able to have “non-cancer days” where they live more or less normally, and, then, they have “cancer days” where they live in this emotional state of darkness and fear. One person told me that when she goes in for her scans (I think at six month intervals now) she packs an overnight bag in case the doctors see something and make a decision to admit her on the spot. </p>
<p>It’s almost sort of an emerging urgent issue - not only will there be a shortage of oncologists very soon, but, with now 10,000,000 cancer survivors in the country, it appears there are not enough mental health experts to address the growing needs of this group. I have on my desk referrals to four of five psychologists and none of them are accepting new patients. </p>
<p>And that’s before we get into the issue of what this does to the first-line care givers. I worry greatly of doing things - or of failing to do things - that may have negative impact on my daughter. I am trying to minimize all harm and stress but in the aggregate there is this huge population of caregivers that need support; many of these persons are very young, either starting families of their own or trying to, and not anywhere near prepared to care for very ill parents. As medical science lengthens survival time the length of time the caregiver stays engaged stretches as well and I worry greatly for these young people. </p>
<p>As an aside, specific to psychological issues, Alumother, I am not always so strong; while I was in Washington I called the person in charge of the lung cancer support group - they have a group that meets every Wednesday, so, I asked, can I come? Well, the coordinator sort of stammered and stumbled and said that well, the group isn’t exactly meeting. Why, I asked? She didn’t really answer me, she sort of stumbled around and said well, recurrances etc., and finally I did ask her point blank and she admitted the group members all died and there wasn’t anyone left to meet with. It had been a long day and I was tired, and, at that moment I simply started to cry…</p>
<p>A friend of mine has been journaling his experiences with kidney cancer (through the CaringBridge organization). In his journal today he reported this conversation:
"–Me: ‘My last question is about something that really affects families and patients who’ve just gotten a new diagnosis. The table you showed of median survival times - that’s from the database of cases from 1976-1995, right?’
–Him: ‘That’s correct.’
–Me: ‘And if I understand correctly, NONE of today’s treatments were available at that time, right?’
–Him: ‘That’s correct.’
–Me: ‘So those figures have nothing to do with outcomes for someone who’s diagnosed today, right?’
–Him: ‘That’s correct.’
–Me: ‘Well I WISH you guys would SAY that!’</p>
<p>Keep these things in mind.</p>
<p>LTS, on the one issue of burdening the young caregivers such as your D, I’m thinking that many people between age 20-30 (I hate to pick an arbitrary number but I just claimed “l0” years for argument’s sake) have no idea what is their purpose in life. If someone had, as a central organizing principle, care of their parent during that decade, why would that be so terrible? If it limited them to a specific city, well they need to decide on a place to live, anyway. Would it keep them from dating? I can’t imagine it. If anything, it might mean they’re set up in a two-bedroom apartment with the parent shouldering most of the rent and utilities, not such a bad deal for the first decade out of college. A lot of young people are like frogs treading in a barrel of milk, flailing about in those early years. At least in this scenario, as a crucial caretaker of their parent, all their motions would be doing something good (making butter!). Having a purpose in life might be as grand as having freedom.</p>
<p>^^^ you are absolutely right p3t</p>
<p>This has become the thread I always want to read, both to support latetoschool and to read the love coming from so many posters.</p>
<p>latetoschool, you have created a virtual community of caregivers who support each other. You’re awesome.</p>
<p>Hi Late to School…in this morning’s SF Chronicle, there was an article about a Seattle artist/glassblower who is a lung cancer survivor. Thought you might enjoy it, although it is more about her business, “Glassybaby”…you are on so many people’s minds/hearts!</p>
<p><a href=“http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/27/HOCQSUCQ1.DTL&hw=glassybaby&sn=001&sc=1000[/url]”>http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/27/HOCQSUCQ1.DTL&hw=glassybaby&sn=001&sc=1000</a></p>
<p>LTS - that phone conversation just about made me cry. There you were, reaching out for support, and got dealt a sucker punch instead. Oi.</p>
<p>
</p>
<p>Well said. However, I think that having a purpose in life is grander, by far! Particularly since, in this case, “freedom” is not really compromised.</p>
<p>LTS, I can imagine that your daughter is truly grateful for the opportunity to do something so wonderful for and with you. And how interesting that your body began craving the foods it needed. I find that so very fascinating!!! </p>
<p>LTS, you continue to amaze me!</p>
<p>LTS, I don’t think tears in the face of fear and possible loss count as weakness. Giving up, making others bear your burden, that would be weakness. You do neither.</p>
<p>I’m sticking with strength.</p>
<p>And I have no doubt that what your daughter is doing now will serve her all her life.</p>
<p>As a caregiver, I can see several different stages. My husband has lymphoma. The first time he was diagnosed, two years ago, he had 6 rounds of outpatient chemo, three weeks apart each. He didn’t stop working, taking just the one day off every three weeks. He felt bad for the first few days after chemo, but by the fourth day or so he was back to full strength, and we continued our 25 mile bike rides on our tandem through the hills on Sundays. My care giver duties included sitting with him through the 7 hour infusions, getting him meals and such, since they don’t provide them there. And caring for basically, some one with a cold, for a few days after each round. (And, of course, the doctor appointments.)</p>
<p>When seven months after his clean scan he found it recurred we were on to the bone marrow transplant stage. His own bone marrow. He needed to stop working. The chemo to get him into remission was inpatient. The house needed to be kept germ free. He was put on a special diet. (Ironically, it was the anti-diet to what he was eating: He could have no fresh fruit or vegetables, or anything that could harbor bacteria. All foods had to be cooked within an inch of it’s life and served hot. Frozen dinners were good. Extra salt was good. Very weird.) I was trained to give him shots, but he preferred to give them himself. Before he was under house isolation he still got out there for the occasional bike ride. Once he had the bone marrow transplant there were three weeks of house isolation, when he stepped outside he wore a big mask. Needless to say, the level for caregiver support for this type of treatment was pretty big. People we know who had spouses that worked and kids actually went and stayed with parents for this portion. As a caregiver, I was able to handle most of this on my own. And eventually he was able to make his own food, and even got up to bike riding again. </p>
<p>At his first scan after that it showed that the cancer had continued growing through the bone marrow transplant, and is very aggressive. At this point it’s a day to day thing, as he could be sent to the hospital any time due to an out of control fever. I haven’t even had a sure free hour to make it to Costco. To make it to my grandmother’s memorial service I had to line up folks to run my younger daughter to her activities(Yes, we stil have one at home, and a freshman in college) , while lining up additional people to be on call in case his fever went up. Today I’m heading out for a bike ride on my own, after dropping him off for another blood transfusion. There is no way he could have a working caregiver at this point. It truely takes a village, and I am very thankful I live in a very loving and unbelievably helpful community.</p>
<p>My aunt is a nurse. When she was in her 20s she had moved away from the family to pursue a career across the country. She had a job, and friends, and a beau. She also met a second cousin who was a priest. This priest had some medical problems, and she became his caregiver. As his medical problems increased she left her friends and beau behind and moved back home with him, where the weather was more ameniable to him getting around. She was his caregiver for 30 years. When he died, her beau came out to the funeral, and helped her out. They started dating again, and married, and are the cutest married couple I have ever seen. And I don’t know that she has any regrets.</p>
<p>Human beings can be so wonderful! </p>
<p>“Freedom’s just another word for nothing left to lose.” Sometimes the songs are right.</p>
<p>lts: Dear friend with a liver transplant is on same diet. I like that your “over mind or oversoul” was taking care of you. Will continue to do so I’m sure.</p>
<p>I am going to order some glass from glassbaby. Colored glass is just about my favorite thing in the world.</p>
<p>UCDAalum82, I am so sorry to hear about your husband’s troubles. You both will be lifted in prayers I am sure by all on these boards. </p>
<p>Take care of yourself!!!</p>
<p>And, LTS, I shared your good news at church today with my choir…they have been praying, of course. One woman remarked that is was wonderful to hear of this online support group and its positive impact in the face of so much negative you hear about the internet…</p>
<p>UCDAalum82, I continue to think of you and send every possible good thought I can manage your way. You have been so generous, kind and gracious to me in PMs, and I have not forgotten. May the Chief Physician who in the end administers to us all find some way to ease this burden, and, may the trial prove productive. This might help just a little bit - the person in charge of the non-existant support group was telling me of a person with a different sort of lung cancer who has been on trial after trial for YEARS; each time he has a relapse, big pharma and the brilliant scientists manage to have something else available, just in time. And of course some of the trials have delivered amazing results.</p>
<p>I do understand what you are going through, in a way, although I suspect it gets harder for caregivers than for the patients. I am amazed at the incredible volume of work it takes just to keep everything straight, especially when going down the road of getting second and third opinions. Yesterday I discovered that the original hospital I went to has lost all of my original film (I was taken by ambulance to a better, nicer private hospital at my oncologists order). We’re hoping they can somehow find the films. But outside of that, just the incredible amount of work my daughter does to keep things straight, doing research, staying on top of questions, making sure dots get connected, etc. - it’s unreal. And there are now no less than 12 doctors on this - I counted. </p>
<p>I have tried to convince my daughter to please get on with her life and post-graduate plans, as if I did not have cancer, and, she stone cold won’t do it. I am troubled at the interruption to her life and I cannot stop being troubled by it, no matter what anyone posts. She is taking Tuesday off work to meet my flight, take me right from the airport to the hospital and sit with me through chemotherapy. That beautiful face, that promising mind and beautiful spirit belongs just anywhere else but stuck in a chemo treatment room for six hours, but, I cannot convince her to do anything different. </p>
<p>Churchmusicmom that is so nice to hear, thank you. I am grateful for prayers and I am convinced that all voices are heard. I am also grateful that people are working together in a positive way electronically, and especially for the owners and moderators of CC. </p>
<p>If anyone is interested, I did read Lance Armstrong’s book today on my flight; it was sort of a fast read and somewhat sophomoric, however, he did hit hard on some points that I now know very well. I think this is an excellent book to suggest to younger cancer patients, and even to people who do not have cancer but perhaps have other challenges in their lives. I wish I didn’t know this, but, in recent days I have read of several people in their very early 20’s who are also on the receiving end of stage IV news. I wish there were some way to help these people. </p>
<p>Last, just a suggestion - I have been reading more and more about the terrible financial struggles of people facing aggressive cancers. I spoke to the five-year survivor in Texas last night and discovered that he is unable to reclaim his life, even though he is at the five year mark. Apparently it is very difficult to re-enter the job market post-treatment, and, it is rather difficult to hide the illness because it’s necessary to explain gaps on resumes. He cannot resume some of the work he did before; he has become very entreprenuerial, but, beyond that, there are so many people who do not have enough money for their co-pays, or who cannot afford their medicines and even proper food, or, their family members cannot afford the travel and time off work to visit them. (My DEA friend told me last week his daughter has completely maxed out her lifetime allowances on his insurance as she has been fighting the same cancer for six years.) And saddest and most heartbreaking of all, there are the people who have no one at all and who face this struggle all alone. </p>
<p>I am not in any of these situations but I would sort of just toss out here - as Sax suggested once before - perhaps with the holiday season coming up, if there are persons suffering who are in the community, perhaps there is some small way on the individual level to alleviate some of that suffering…</p>
<p>Patient, thank you for the link - very inspiring! :)</p>