Inkerdoodler
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Posts posted by Inkerdoodler
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Many prayers are with you and Mike right now that the results of the scan are OK. Be strong and hang in there... you have already been through a lot and you can handle whatever is ahead. Hope it's all positive! Sandy
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Despite the losses, I know that my Jim far exceeded the statistical odds that we were given when he was first diagnosed, and his positive attitude and fighting spirit helped us to go through it together with humor and love... and this group was tremendously helpful and supportive in terms of giving us advice on questions to ask and reassurance about side effects, etc. Knowing the possibilities of what we might expect was important in preparing both of us for what was ahead. I think all of us who join this group have had to recognize the reality that lung cancer is highly unlikely to be "curable" so the best we ever thought we could hope for was to extend the time he had as much as possible, and to make every minute as positive as possible. I know that Jim and I did that. At his service, my daughter said that we said "I love you" every day and MEANT it, and what a wonderful gift that was for each of us to know we were loved, and that our marriage encouraged her to believe that true love really does exist. Afterward some of my colleagues told me I should write a book entitled "Say I Love You Every Day" -- So, hug your partners and keep letting them know how much you love them... just do the best you can in this challenging journey! Sandy
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James W. Franklin II, 61, of Marshfield, Massachusetts, died on March 24 at Brigham & Women’s Hospital in Boston after a long battle with cancer. Beloved husband of Sandra Putnam-Franklin, he is survived by a son, James Franklin III, a daughter Leslie Lowe of Sturgis, South Dakota, three stepchildren Jeffrey Putnam of Danvers, MA, Ginger Putnam of Brunswick, Maine, and Daniel Putnam of Pembroke, MA; a sister and brother-in-law, Marsha and Jack Blum of Columbus, Ohio; a brother, Mark Franklin, of Columbus, Ohio, a sister and brother-in-law Wayne and Barbara Lake, of Easley, South Carolina, five grandchildren, Brad Leaman of Brunswick, Maine, Olivia Franklin of Weymouth, Massachusetts, and Courtney Sulzbach, Maximillian Lowe, and Madeleine Lowe of Sturgis, South Dakota, eight nieces and nephews, and seven grand nieces and nephews.
He was born in Michigan, graduated from Linden McKinley High School in Columbus, Ohio, and attended The Ohio State University and Franklin University. Formerly employed by Chrysler Corporation in Sandusky, Ohio, and Weymouth Art Leather in Massachusetts, he owned his own sales and marketing business, J.W. Franklin & Associates. He was named in 2005 as National Chairman of the Trim Division of the Automotive Aftermarket Industry Association.
He was an active member of the Masons, serving as Master of the Daniel Webster Lodge, and a member of the Shrine, and Royal Arch, as well as serving as Worthy Patron of the Order of the Eastern Star.
Contributions in his memory may be made to the Daniel Webster Masonic Lodge, Marshfield, Massachusetts or the Shriners Hospitals for Children.
This obituary could not begin to capture Jim's greatest gift which was his wonderful sense of humor. He could light up a room or lighten the heaviest heart. His life was a model of goodness and giving to his family and community.
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If your treatment center has palliative care experts they may be able to help... ours suggested low dose of steroids to increase appetite when weight loss became a real concern. Worth asking the question! Good luck. We also had luck with the shakes from "AdvantEDGE" by EAS... he thought they tasted better than "Boost" or other products. Nutritionist recommended high protein products, peanut butter crackers, etc. and not letting the stomach get "empty" which creates that nausea sensation.
Sandy
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My wonderful Jim passed away a month ago. Now his sister, who also had NSCLC (diagnosed at stage IV 5 years ago) has just undergone her second surgery -- a lobectomy on the other lung. She came east and attended services for Jim and we spent lots of time together and she is more a sister than a SIL to me. Last night we got a call and learned that she had to be intubated because many of her vitals were unstable after the surgery. They are going to try to wean her off it today. Learning about the intubation was heart wrenching and revived our memories of our entire family's meeting with the ICU medical team caring for Jim. They had told us that when an advanced LC patient has to be intubated it's very unlikely they will ever come off the respirator, and that putting him on it would be extremely uncomfortable and frightening, and that he would be unable to talk, and that it would not represent any improved quality of life for whatever time he had left. We made the decision NOT to intubate, so when I learned about his sister I panicked. Now if they are able to get her off the respirator, I am agonizing over whether or not we made the right decision... could we have given him more time? Did we actually cut his life short by our decision? Do all families go through these periods of second guessing the decisions that were made?? I know I need to trust that we made our best decisions based on the information that was provided to us, but I am struggling with the feelings of anger and confusion in the the event that he might have had more time. I know we didn't want him to suffer any more, but I would give anything for a few more minutes or days with him.
Sandy
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My deepest sympathy to you and your family on your Mom's passing. My own pain is still new and we have setbacks and meltdowns regularly. Let yourself grieve and let yourself smile and be joyful at the memories. It's a hard road to recover from such a loss but at least her pain and suffering are over. I have to keep reminding myself of that... no more pain.
Sandy
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My wonderful Jim passed away on March 24 after 4 days in ICU battling aspiration pneumonia. I bless the nursing staff at Brigham & Women's hospital in Boston for caring for him with compassion and dedication and being so good with his family. We were able to be with him 24/7 and three of us were holding his hands at the last moments. The nurse reassured us that he could hear us and he knew we were with him, so we had time to tell him how much he was loved. In the weeks before he died, when people were asking what they could "do" we asked them to write him "love letters" sharing memories of how much they cared about him and how he had impacted their lives. We read them to him those last days and then shared those stories with others at the visiting hours and services. It was a tribute to his life. His humor and selflessness and his courage through this battle inspired everyone. I will miss my hero and best friend forever. Sandy
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Jim was admitted to the hospital through the ER on 3/20 with pneumonia, dehydration and respiratory distress (probably brought on by anxiety when they decided to transport him by ambulance). We had been forewarned that most emergency crew will want to intubate and were faced with the decision of whether to allow it. They wanted to do it immediately in the ER telling us he "needed it" but we had been told that the chances of an advanced LC patient ever being able to come off a vent was slim, so we said NO! We knew he would not be able to talk to us on a vent and we wanted to allow him as much dignity as possible, as well as hope in case the pneumonia could be treated. We know we made the right decision because he was with us, communicating, for another 3 days. The pneumonia was evidently caused by aspirating fluid or particles. This was the result of his vocal cord paralysis, which created a "space" where partiles could go the "wrong way"-- not uncommon, but we had never been warned of this possibility. I know others on this board have similar conditions so I wanted to let them know! Sandy
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My wonderful Jim lost his battle on March 24 after 3 days in the ICU. He struggled to breathe even on the bi-pap mask and they finally removed it and put him on a standard oxygen mask to make him more comfortable. He fought the battle to the very end. The nursing staff was incredibly supportive and caring and kept him comfortable so that the end was peaceful and he was surrounded by his family holding his hands and telling him how much we loved him. We know he could hear us. We watched as the monitors showed each of his vital signs going down, and his heatbeat was the last. When it finally reached zero we all embraced, sobbing by his bedside... suddenly a minute later my son looked up and said "he's back" and sure enough the little heartbeat was back... and continued for another two minutes or so. We know it was his way of telling us that his heart was still with us, and it always will be. I have appreciated the support of this group throughout our battle and was better able to advocate for his treatment. Thank you for your support! Sandy
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Dear friends:
This is the hardest thing I have ever had to write.
My beloved Jim passed away at 4 a.m. this morning, March 24. His pneumonia was just too much for his lungs to handle with his cancer.He fought the fight just as hard as he could for more than two years, and twenty years after quitting smoking.His last hours were peaceful and he was surrounded by his family holding his hands and telling him how much we loved him.I can't say enough for the ICU staff at Brigham & Women's Hospital in Boston, who were so caring and supportive, and made sure he was not in pain. Jim touched the life and heart of everyone he met in some way. His wonderful spirit and sense of humor and his uncompromising ethics have been a model for his entire family as well as all the friends he made.He was the most loving and caring husband and father and grandfather, and his family was his most important priority.I have been so blessed to have had him as my partner for more than 20 years. He brought me the greatest joy I could have known and he will be deeply missed.We have not yet made arrangements of any kind but will let people know details later. I can tell you that his family does not want to focus on the immediate sadness of his loss, but would like to focus several weeks later on a celebration of his life so that we can remember all the positive and happy things.
Sandy
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This message is also posted on NSCLC forum. On Monday Jim went in for progress check re. Tarceva. While there they said he was dehydrated and sodium, postassium, RC and WC were low so they wanted to admit him to be "beefed up" - in process of transfer to ER he had an acute resp. distress attack. 7 hrs in ER and they wanted to intubate him right there... we said no way!! Then went to a room on meds and oxygen, blood thinners in event of clot, and antibiotics in case of pneumonia. Then they decided to transfer to ICU. Turns out he does have pneumonia. On nebulizers almost constantly for wheezing. Was "out cold" most of yesterday due to morphine. He is on a bi-pap mask to help with breathing. Four of our 5 kids are here every day and all being supportive but in tears most of the time. We really thought we were losing him yesterday and we had to make a decision on DNA order which was awful but we didn't want to hurt him any more if there was little chance of benefit. But good news is he is doing better this a.m. Breathing improved since yesterday; more alert and making eye contact, even gesturing and making faces at nurses, and very frustrated that he can't make himself understood. Yesterday he was using a clipboard to write notes, but today the meds are making his hands 'shaky' and we can't read what he writes. Then he gets upset and his heart rate goes up. He is the strongest man I know and keeps fighting. His favorite movie is "Unsinkable Molly Brown" when she says "I ain't down yet... my eyes are still blinkin'!" Keep all the prayers coming! Sandy
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On Monday Jim went in for progress check re. Tarceva. While there they said he was dehydrated and sodium, postassium, RC and WC were low so they wanted to admit him to be "beefed up" - in process of transfer to ER he had an acute resp. distress attack. 7 hrs in ER and they wanted to intubate him right there... we said no way!! Then went to a room on meds and oxygen, blood thinners in event of clot, and antibiotics in case of pneumonia. Then they decided to transfer to ICU. Turns out he does have pneumonia. On nebulizers almost constantly for wheezing. Was "out cold" most of yesterday due to morphine. He is on a bi-pap mask to help with breathing. Four of our 5 kids are here every day and all being supportive but in tears most of the time. We really thought we were losing him yesterday and we had to make a decision on DNA order which was awful but we didn't want to hurt him any more if there was little chance of benefit. But good news is he is doing better this a.m. Breathing improved since yesterday; more alert and making eye contact, even gesturing and making faces at nurses, and very frustrated that he can't make himself understood. Yesterday he was using a clipboard to write notes, but today the meds are making his hands 'shaky' and we can't read what he writes. Then he gets upset and his heart rate goes up. He is the strongest man I know and keeps fighting. His favorite movie is "Unsinkable Molly Brown" when she says "I ain't down yet... my eyes are still blinkin'!" Keep all the prayers coming! Sandy
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Many prayers and warm thoughts go out to your family in your loss. Ken fought a brave fight to the very end and you can be proud that he loved you all so much to try to do that for you. I will pray for your strength to deal with your loss.
Sandy
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I am curious if anyone has had experience with this drug? This is the one that docs say would be the "last option" in the event that Tarceva does't work. The info on the web sounds vile enough re. side effects that I don't think I want him to go through it. Sounds like potentially life-threatening diarrhea and other effects. Is it as bad as it sounds? Sandy
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Welcome home and hope you continue to progress and improve! Pain management is a huge issue. Jim was experiencing a lot of chest pain (probably because several ribs are now involved as well as progression into the pleura where there are nerves). Tried oxcodone which didn't work, and then they put him on Fentanyl pain patches in varying strengths. The patches didn't seem to work well for him at all... didn't control the pain, and also made him extremely sleepy and "dopey" -- sometimes he even got a "wild eyed" look that really concerned us. Finally they removed the patch and put him on time-release oxycontin which he can supplement with low dose oxycodone and ibuprofen. He finally seems comfortable. He doesn't want to feel "out of control"! Sandy
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My step daughter had a condition called PSVT (paroxysmal supra ventricular tachycardia) which is caused by a defect in a nerve to the heart. For years she was misdiagnosed/treated for "anxiety" until one doc finally tracked down the real cause. She eventually had a surgical procedure that took care of it and has not had a problem since. Do a search on google for PSVT and I think you will find some interesting information that will be worth investigating.
Sandy
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We wish there was an alternative to our traveling but it's not likely to happen because his daughter is again pregnant.. now with TWINS. They already have 3 kids ages 5,2,and 1. Cost of bringing them here would be more astronomical than our going there. No bargain fares to SD! Frankly, in the two years since he was diagnosed there have been opportunities for her to come here, but her own priorities/issues have always taken precedence. It may be her form of "denial" but it's hard for him to understand. Still he tries to be loving and supportive of her choices. We talk regularly on the phone and email, and use the computer "camera" but you can't hug the kids that way!
As for treatments, they say his cancer is now "resistant" to chemo and it won't work (they say they don't want to 'make him sicker.' Have not asked specifically about Gemzar. Still considering second opinion at MA General. Jim's getting 'paranoid' that his docs have an "agenda" and would communicate that to docs at MA General. I think the docs think we are just not facing reality... but we just want to continue to fight with all the arsenal available to him! (HIS choice!) - I will support whatever decisions he wants. He had a good weekend and spent yesterday with his son, wife, and 1 year old granddaughter bringing lots of smiles... even ate a little steak on the grill! Sandy
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We had another visit on 3/10 after being told 3/6 that we were virtually "out of options". They had us meet with a psychooncologist who wants to refer us to hospice. We are devastated and Jim is not ready to give up! His pain had been pretty well under control but with the stress of this news it came back and took three days to get it back under control. Last week's scans show continued progression and that the Navelbine was not working. They said there was only one more chemo which is considered highly toxic and only had a small chance of working; it would be likely to give him severe diarrhea. However, when I went into the meeting on 3/10 I was armed with a list - they are willing to try him on Tarceva despite only a small chance of it working. They are telling me that it is "only months" regardless. It appears that three ribs have been invaded and are being destroyed and there are additional nodes in various other places, as well as in his "good" lung. But if he does nothing, there obviously is NO chance so we're willing to take whatever chances are available. He also has a double hernia aggravated by constipation caused by the pain meds, making it difficult for him to walk. He is able to "push it back" but I worry about it! Still considering CTCA if Tarceva doesn't work, as well as a second opinion at MA General (he's being treated at Dana Farber in Boston). Too many things still "undone" right now and finances are very difficult but we want to try to travel to South Dakota to see grandchildren, two of whom we've never met. Oxygen on flights is a real barrier and we need to do it fast while he can tolerate it. Our minds are spinning. Sandy
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Donna: I can so identify with you. We received similar news this weeks, and are considering going to CTCA in Philadelphia. We were told we were out of options. We practically insisted on other alternatives and he will start Tarceva next week, with supposedly only a minimal chance of any success. Don't know if CTCA can offer anyting different because we are already being treated at supposedly one of the best places in the country, but when you are desperate you'll try almost anything. Ours is also a second marriage... we have been together for 20 years, married for 15 and he's the best thing that could ever have happened to me. Just hold his hand they way you hold his heart and be there for whatever is ahead. We need to be strong for them. Everyone wants to know what they can "DO" but there isn't much. I've asked his family members to start writing love letters filled with their favorite memories of thim so I can share them with him when I think the time is right. I will pray for you both to give you the strength you will need in the coming days. Sandy
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Is your Mom getting regular blood tests? Her energy may be down because of decreased red counts which is pretty easily treatable... look into that! Jim was like a new person after Aranesp injections and transfusions. Good luck! Sandy
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I have been exploring options for other opinions after being told Jim has few treatment options left. We are being told our only costs would be $30/day for the room... insurance would cover the rest, and they have access to all kinds of different treatments. They would pay travel for us as well. I assume we would stay there during entire treatment. Sounds too good to be true and I'm a born skeptic... has anyone out there gone this route? Sandy
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1> How did you find LCSC? Referred by a friend from another LC support group that no longer exists.
2> When you were diagnosed what kind of info about LC were you given? We received some brochures from Dana Farber Cancer Insitute in Boston where he is being treated. While there are resource centers there we were not supported in accessing them or any other supports such as counseling until they decided there were few treatment options left for him.
3> What is largest city closest to you? Boston. Is there a live support group specific to LC for patients? caregivers? family/children of patients? There are support groups there but we leave 30 miles away and accessing them would require additional time/travel and it's hard enough for us to get in there for our appointments.
4> Where and how were you diagnosed? Who told you of your diagnosis? Dana Farber Cancer Center. First inkling was diagnosed by his primary care doc after he complained of shortness of breath. Despite years of asthma this doc never ordered a chest X-ray and when he finally did, the growth was 7cm. We decided to go directly to Dana Farber.
5> What do you think could have been done differently/better (re: your dignosis) and how you were told/educated about LC? More support, more compassion. Too "clinical"
6> How many other Lung Cancer patients have you met face to face in your community through MD/hospital, etc...? Few.
7> How many < Lung Cancer > FUNDRAISERS have you seen/heard about? Please be specific as to what they are and where the organization is? Names, address, telephone, website & brief info would be great? 0
8> Have you had difficult getting TREATMENT or MEDICATION because of LACK OF MONEY or LACK of INFORMATION? If so, please explain in detail. No.
9> Were there treatments available to you elsewhere in the country but you were unable to travel due to cost or difficulties related to your illness? Not sure... haven't explored options out of state due to potential costs not covered by insurance. Travel is difficult due to supplemental oxygen surcharges imposed by airlines per leg of a flight plan.
10> Do you have enough help at home? Please explain re: family/spouse/friends/nurse/CNA/other....
11> What types of things would make you/your home more comfortable with relation to your LC? Time to clean/organize it to make it comfortable for him, but trying to continue to work full time and also take over all the other household tasks that he used to do is overwhelming.Housework takes a back seat.
12> What has been your most difficult experience throughout this ordeal (OTHER THAN DIAGNOSIS)? The thought of losing my best friend.
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At our hospital they have a department of "psycho oncology" that deals with many issues related to emotional/behavioral issues that accompany cancer. For us it's one more "benefit" of dealing with a large treatment center... and they are specializing in the very things you're describing, especially side effects and interactions of various drugs and making adjustments in dosages. Worth looking into... sometimes the clinical docs are so caught up in the physical body that the mental part is relegated to low priority. For families, the emotional part is just as important!I have also heard that "antidepressants" sometimes can have almost an opposite effect... check out her symptoms with the experts! Good luck! Sandy
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My heart is breaking. Yesterday they told us that his scan last week showed that the cancer continues to progress and that the Navelbine is not working. The think that totally has us in shock and disbelief is that they told us there are "no other options" left for him... there might be one but it is "highly toxic" (can't remember the name; I think it started with an "I") and are leaving it up to him to decide if he wants to go through it. They are talking about referring him to hospice, and to us that is for people unable to take care of themselves. We feel like they are closing the door on us. Jim is unbelievably down, and his response to most questions is "it doesn't matter" -- totally unlike him. We feel like they've taken away his hope. I want to pursue other opinions based on what I've read on this board, when I see folks who have been through many more kinds of treatments than he has. He's supposedly being treated at one of the best places in the country. Out of state is probably not an option as our insurance probalby will only cover a portion, and Massachusetts doesn't allow providers to "bill back" the difference to the patient... we have NO money to pay the difference which is sometimes thousands of dollars. Any advice would be welcome! Sandy
Mike's Results
in CAREGIVER RESOURCE CENTER
Posted
Dear Kim Mike and family... what wonderful, wonderful news... we all needed to hear some postitive news and someone with good results right now. Many prayers are with Mike for continued success in this battle!
Sandy