<p>Worrying about Sunshine and Sunshine’s H …if anyone has a back channel to make sure they are ok, please use it and let all of us thinking of them know how they are doing.</p>
<p>Dear wonderful friends here on CC:</p>
<p>we finally got our power back after six days of darkness. I never realized how blessed one feels to simply have the basic necessities like power and heat. The house was like a refrigerator for a while. Luckily no damage to the house. A very big and old tree from the adjoining green acres fell and would have landed on our roof if not for the fact that our equally massive trees broke the fall. Now, I wonder if the township will take care of this fallen tree or not - a very minor issue compared to other damages I see around this area.</p>
<p>Given my and H’s conditions, this power outage has not been easy to deal with. Dealing with ileostomy related issues with a candle light in the middle of the night is a dicey business. More than that, my H, who is dependent on the oxygen machine 24 hours a day had a hard time. The machine at home needs power to operate, so that was out. He has a portable one, but the battery lasts only 3 hours so he would hook it to the car with a vehicle adapter, turn the engine on, and stay in the car for hours. Luckily, they delivered manually operated oxygen tanks on an emergency basis so the worse crisis was averted. We should have been better prepared but a generator was not to be found anywhere in NJ, and neither of us was in a physical shape to scurry around to find what’s needed before the storm hit. He ordered the oxygen tanks before the storm hit, but it took several days for them to deliver them with all the infrastructure damage.</p>
<p>I had chemo scheduled plus two other doctors’ appointment (the pain doctor and my surgeon) on Oct 30th - all cancelled. They rescheduled the chemo for me the next day when they reopened the center - it was much appreciated: since I am on a weekly schedule, if one appointment is pushed too far back, it’s hard to get back on the original schedule.</p>
<p>So, I am half way through the second cycle of the new regimen, and in spite of everything, I am actually physically doing better - the chemo side effects are milder and I seem to have a bit more energy during this cycle than the last cycle. I would like to believe that this is an indication that I am indeed responding to the latest treatment, and as the cancer is retreating, my body seems to do better.</p>
<p>this coming week is intense for both of us - medically speaking. I have a chemo in NYC on Tuesday. H has to go to Philly on Tues, Thurs, and Friday for three days of intense tests as part of the process to be formally put on the lung transplant list. We are very lucky that we live in NJ. From NJ, he can be put on two regional transplant waiting lists: the NY region and the Mid Atlantic region that includes PA. He will be registered in U Penn Medical Center and Columbia Presbyterian. The would be lung transplant recipient must be located within a 4 hour access area. As such, the transplant waiting lists are maintained separately based on the physical location. If you can reach multiple locations within 4 hours, then you can be put on multiple, independent lists, which ups your odds of getting an organ. Here, you can clearly see: if you have a private jet, you can be put on many lists!</p>
<p>This intense schedule presents a logistical challenge for us. I could take a car service to NYC for my treatment. However, H needs somebody with him: the tests require anesthesia and they won’t release him without a companion - and a cab driver/limo chauffeur won’t cut it. Since I am reacting to the chemo treatment with fatigue and nausea, H won’t hear of ME taking him to Philly on Thurs and Fri. Here, our loyal friends volunteered to be his companion. </p>
<p>On tuesday, a friend will take me to NYC (though I could take a limo, she INSISTED). Another friend will come from CT Monday night, stay overnight with us then take H to U Penn. Same deal on Thurs and Fri offered by other friends. We are so enormously grateful. We feel very fortunate not just because of the solution to the logistical problem, but because of the fact that we are surrounded by people who deeply care about us. </p>
<p>Through out the blackout period, we had friends who fretted over us with concern. Called us to make sure we are OK. Invited us to stay in their house (they had a generator) that partially lit the house and provided heat. We accepted their invitation for the day stay for several days (not over night though since the bath rooms were not lit and that was the key issue for me). Last night we stayed with another couple whose house was powered earlier than ours. they came and got us. I told my nurse to go visit other patients who need her care more than I do since I am not a critical case. Nevertheless she came anyway - off hours - she said, “we will just consider this MY personal, social visit with you”. </p>
<p>I am simply amazed by the overwhelming good will people have toward us. We have done so little to deserve it. We are so profoundly grateful. </p>
<p>All in all, I think there are people who are struggling with dire issues, and our problems are nothing compared with theirs. I am very fortunate.</p>
<p>I have to admit, though, that my H’s condition is worsening now: the stress of last five days during which everything had to be done manually did not help. A lung transplant sooner than later would be greatly welcome… That said, he is still working full time. He works 4 days at home. Amazingly enough, he is doing VERY WELL - working on on a project highly visible to the upper echelon of the company and getting great feedback for the excellent work he is doing. His company policy and the people who he is working with and for have been both amazing. This company deserves the reputation as one of the best places in the world to work for. </p>
<p>This night, safe and secure with a lit and warm house, I feel such gratitude for all that we were given, and wish that other folks in trouble would get the relief they need and deserve better than we do.</p>
<p>Hi sunrise - I’m glad you have power back and made it through the storm okay. It’s great that you have such good friends to help you through the aftermath of the storm, as well as helping with some of your transportation and medical needs. I suspect that you have done plenty over the years to deserve the kind and helpful friends that you have. I continue to keep you and your husband in my thoughts.</p>
<p>Truly some thing to be said for great friends. I am happy they were there for you and H. I hope your husband is able to have the transplant quickly and I am happy to hear that your second cycle is a bit easier for you. I wish you both the best.</p>
<p>havehope,</p>
<p>So sorry that you have to deal with the same disease as mine. This is a sneaky disease: not much of a symptom till it’s advanced. I had an annual physical that included a gynecological check up six months before I diagnosed with advanced stage OVCA. I hope yours was discovered earlier.</p>
<p>One thing I learned throughout this journey is that we can live long with a careful management of this cancer as a chronic condition. We live one day at a time, and by doing our best to keep otherwise healthy, we can hope that we stay one step ahead and let the wonderful scientists come out with new treatment protocols and discoveries. </p>
<p>Good luck to both of us!</p>
<p>Sunrise, your post is a reminder to everyone to make sure they are registered as an organ donor, and make sure your family members know about your wishes as well! And encourage them to be donors as well. There are so many families like Sunrise’s desperately hoping for organs for their loved one. Glad to hear you made it through the storm okay, and sending continued best wishes to you and your H.</p>
<p>this is so true. I was registered as a potential organ donor when I first got my driver’s licence. Alas, I no longer can be a donor due to my cancer! I used to donate blood religiously. I am also told that I cannot be a blood donor either. However, I read somewhere that my cornea can still be used. </p>
<p>One of my H’s closest friends initiated a national program in Israel: in Israel, if neither you and any of your direct family members did not sign up as a potential donor without a medical reason (like mine - cancer), your are automatically put on a “low priority” list as a organ donation recipient. He is a surgeon specializing in heart transplant: recognized as a world expert and featured on various USA media multiple times.</p>
<p>He explained to us that he came up with this initiative because as a heart transplant surgeon he was aghast to learn that the Israeli ultra orthodox community will NOT sanction organ donation on some religious ground but the members who need organs are free to be a recipient. He thought this was so unjust. This community sits in judgment of the secular community in the country with a holier than though attitude about a lot of social issues. Yet, when it comes to vital “resources”, they would be happy to receive an organ from the “immoral” members of the society but won’t contribute by being organ donors. </p>
<p>This friend also started an initiative that has made it into a national law that an organ transplant surgery in third world countries won’t be covered by the national insurance program. He initiated this project when he found out that some Israeli patients were going to places like rural China and India and come back with new organs. You can guess what’s going on there. </p>
<p>He is my hero.</p>
<p>sunrise, </p>
<p>one only needs to skim your posts to see why you have so many and such wonderful friends.</p>
<p>I was so glad to see your posts today.</p>
<p>I, too, hope for your H to receive a transplant soon, so that he can sooner return to good health along with you. Because you are indomitable…and you are going to kick OVCA into submission.</p>
<p>Boysx3 was thinking of you and the song you recomendedthat gave and gives me peace.
sunrise so glad you markers are down and you survived the storm. Take the healing love and care that people give you, they want you to be here and want to do anything to make that happen. when you are in remission you can help them. karma</p>
<p>sunrise, what goes around comes around. </p>
<p>A dear friend of mine who sat in the hospital when I was unconscious in ICU and read Psalms to me until she was hoarse (and I never knew until someone else told me later) had surgery Friday. It was a joy and privilege to be there with her from beginning to end and asked our rabbi to come by to see her as well. She has no immediate family and I was not going to let her go through this alone.</p>
<p>I KNOW you and your DH have been there for others over the years, so I am not in the least bit surprised that your friends are rushing to help you now. One thing I learned this summer is that it gives many people joy to be able to help in a tangible way. What a wonderful home nurse you have, too.</p>
<p>Thanks goodness the tree didn’t hit your house. And three cheers for wonderful, understanding employers. </p>
<p>I hope you both have a successful week with testing/chemo/travel to NYC and Philly. Sending you much love, health and peace!</p>
<p>Dear Sunrise,
Thank you for your good wishes. I admired you for many months before I was diagnosed with ovarian cancer. Then when I received my diagnosis, I re-read your posts. Your fighting spirit and positive attitude were such a beam of light on a dark and unknown path. I resolved to do everything I could to make the best of the situation I was given. I was diagnosed at stage IIIc, but I am hopeful that I will beat it. I am clear at this point, but realize ovarian cancer is a tricky disease that likes to make you work for your remissions.</p>
<p>I am sad to know that I can no longer be an organ donor. I guess I never thought about cancer being a disqualifier, but it makes sense. Please know that you, your husband, and your sons are in my prayers. There is no doubt in my mind that you deserve the kindness and generosity of your friends. You obviously did things for others that were so second nature to you that you failed to think of them as a “big deal.”</p>
<p>I hope your treatment goes well this week. Please keep us posted when you can. You are in the hearts and minds of many.</p>
<p>sunrise, thank goodness you are warm and safe. I will hold you and your H in my prayers during this difficult week.</p>
<p>sunrise, Thank you for posting. Many of us were uneasy, knowing that you were in NJ. I’m glad that you and your husband made it through the storm and aftermath, with the help of your friends. I am hoping that a transplant comes through for him soon. And I’m happy to hear that you are feeling better!</p>
<p>Wishing your husband good luck with all of his appointments, and hoping that he is placed on the “list” very quickly. A friend had a double lung transplant several months ago and it has changed his life completely. I know there is hope for a wonderful future for your husband.</p>
<p>Thank you for letting us know you have weathered this storm, and have been helped by so many. Also, thanks for sharing the story of your husband’s friend. He is truly remarkable.</p>
<p>Take care!</p>
<p>Remember that just because you can’t donate your organs doesn’t mean that you shouldn’t sign up to donate. I had a bone graft with deproteinized bone from cadaver bone. Anyone can donate that kind of bone. Let the doctors decide what they can use.</p>
<p>Best to you and your husband, sunrise. Sometimes, it truly doesn’t rain, but it pours. Glad you were able to ride out the challenges of the storm and wishing you calm days.</p>
<p>Sunrise, hoping you are warm and dry in this new storm. Hope you have a wonderful day.</p>
<p>Hello Sunrise! I am thinking of you and Mr. Sunrise and sending good wishes your way.</p>
<p>My SIL was a breast cancer survivor, and often mentioned how sorry she was that she couldn’t donate her organs due to the chemo. She passed away unexpectedly from an entirely different cause, 9 years after her cancer diagnosis (without a recurrence). By the charts, she shouldn’t have lived more than a couple of years. When we were asked if she would have wanted to donate her corneas, the only thing she was eligible to donate, there was no hesitation in our answer. I know she would be very happy with the decision to donate.</p>
<p>Thinking of you today and hoping that your husband’s appointments in Philly happened without too much difficulty, that you’re recovering from your latest chemo, and that the most recent storm didn’t knock out your power again.</p>