SherryZ Posted August 5, 2017 Share Posted August 5, 2017 On July 17th I went to see my PCP thinking I had pneumonia. Today I'm sitting here with a diagnosis of limited SCLC, although my oncologist hasn't received the results of the brain MRI yet. Since learning that I have SCLC on July 24th, I've had a CT, bronchoscopy/biopsy, PET scan, radiation oncology consult, a chemo/radiation plan made and an Xcela port placed for chemo. I haven't gone one day without a test or consult since the middle of July. On Tuesday I go for a test for the accuracy of the radiation markings, then am scheduled to start radiation and chemo on Wednesday. I had the brain MRI today, which is the first diagnostic test that didn't seem to happen over night. Now I have three days of nothing but thinking and time for everything to sink in. My husband, kids and I have planned a "go bald" picnic this Sunday. I'm going to lose my hair anyway, so I might as well do it on my terms, right? My youngest (who's 25) is going bald with me. My husband probably will do the same. And then we're sending my hair to a children's charity since I haven't had it cut in over 13 years. What a way to finally have that done. After that, who knows what will happen. I feel like I was given the best bad news when I was told I have limited SC. Now I feel like I'm waiting for the rug to be pulled from underneath me as I wait for the results of the MRI. I have my small moments of breaking down, but I mostly feel emotionally numb at this point. I'm just now beginning to understand all this information that's been tossed in my lap. I'm scared I won't have time to understand the rest. Michele and Susan Cornett 2 Quote Link to comment Share on other sites More sharing options...
Pegi Posted August 5, 2017 Share Posted August 5, 2017 WOW! When it hits that hard and fast your brain does not want to process it. I know we have been on this journey since June 12th and it is like being on a roller coaster waiting for the crash. I love the go bald picnic idea. Just AWESOME! 3 days of nothing rest and enjoy your life. Emotional numbness hits when you are tired and waiting for answers. It seems to take forever. It is the unknowns involved in all of this that drive us crazy. Take care, God Bless and keep us posted. peg Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted August 5, 2017 Share Posted August 5, 2017 Sherry, Welcome here. Breaking down, emotionally numb and lots of information to digest, we understand completely and absolutely. Lung cancer almost always presents as a surprise with nasty looming consequences. It sounds like you have a competent and responsive treatment team from your description and sequence of tests so I'll not dwell on those details. Let's try and refocus. I am indeed fortunate to have survived thirteen and a half years after diagnosis with NSCLC and my treatments (many failures) including: three thoracic surgeries, four tracheal stent procedures, eighteen infusions of taxol and carboplatin and conventional and stereotactic body radiation therapy. I averaged 18 weeks of treatment and 24 weeks of no treatment for almost four years. During the 24 week periods of no evidence of disease (NED) or questionable evidence of disease, I fretted, fussed, and fumed. That was a vast mistake. I should have been living. Your course of treatment will have two objectives: eliminate your cancer and extend your life. At this juncture, both outcomes are possible, no more than possible, probable. Highly probable, given the reading I'm doing on advances in immunotherapy and radiation therapy for small cell lung cancer. So, don't do what I did. Enjoy your life extension. There is so much about lung cancer that you cannot influence or control, but you can decide to not let lung cancer ruin your life. That is well within your power and capability. Here, read this, then re-watch the movie. Then, buy some truck tire inner tubes, inflate, and float the Redstone Creek. I had a blast floating that creek as a college student during a fraternity house swap week in the late 60s. With all the emphasis on cleaning up waterways, it must indeed be a very pleasurable activity these days. I know West Virginia, a couple of driving hours south of you, has wonderful rivers to float. Questions? Of course, this is the place to ask and more than likely, we'll have answers. But your life is your thing, so go make that happen during treatment and after. Stay the course. Tom ViviAnn, BridgetO and Michele 3 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted August 11, 2017 Share Posted August 11, 2017 Hi, Sherry, Welcome to LCSC. I'm sorry you've been through so much lately. We're glad that you found this community. It is a great place to connect with others who are navigating a lung cancer diagnosis and to share experiences. Please feel free to explore the discussion boards and join in on any of the conversations which resonate with you. When you have more information about your diagnosis, this community is a good place to ask questions. I am also happy to give you some information on LUNGevity's support programs. In the meantime, know that we are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Michele Posted August 11, 2017 Share Posted August 11, 2017 Hi Sherry Z: my husband has limited stage also. Going threw chemo we found the most important thing is drink lots and lots of water .it is very easy to get dehydrated. Also get magnesium vitamins . eat well even if your not hungry.rest when u are tired. Good luck on your journey and keep us posted. Michele Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted August 11, 2017 Share Posted August 11, 2017 Hi, Sherry. It's hard not to get overwhelmed by all of the new information, appointments, treatments, etc. For me, it was a total lack of control of my schedule and my life that drove me crazy. But it sounds like you have a great support system and that really helps. I shaved my head a few weeks back and had a couple of guy friends shave theirs in solidarity. I went to my oncology appointment today wearing a t-shirt that says "My oncologist does my hair." Keep us posted on your progress. We're here for you. LaurenH and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Michele Posted August 11, 2017 Share Posted August 11, 2017 Luv the t shirt! Quote Link to comment Share on other sites More sharing options...
LexieCat Posted August 11, 2017 Share Posted August 11, 2017 24 minutes ago, Susan Cornett said: I went to my oncology appointment today wearing a t-shirt that says "My oncologist does my hair." Does that mean you have to tip? Michele and Susan Cornett 1 1 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted August 11, 2017 Share Posted August 11, 2017 Isn't the shirt great? Got lots of smiles from my fellow baldies at the oncology center. Tom Galli, Pegi, ViviAnn and 5 others 8 Quote Link to comment Share on other sites More sharing options...
Michele Posted August 12, 2017 Share Posted August 12, 2017 I love it!!! Especially with your wonderful smile. Susan Cornett, Tom Galli and Daughter74 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted August 12, 2017 Share Posted August 12, 2017 YES - YES - YES - YES and once more with gusto! YES! Stay the course Susan! Tom Michele, Susan Cornett and LaurenH 3 Quote Link to comment Share on other sites More sharing options...
ViviAnn Posted August 12, 2017 Share Posted August 12, 2017 Great shirt and wonderful smile. I admire you, you have such a great attitude. ViviAnn LaurenH, Tom Galli, LexieCat and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 12, 2017 Share Posted August 12, 2017 I too like that tee shirt , and your smile. Laughter is good medicine ! Donna G Susan Cornett, LaurenH, SherryZ and 1 other 4 Quote Link to comment Share on other sites More sharing options...
SherryZ Posted August 13, 2017 Author Share Posted August 13, 2017 Thank you all so very much for the warm, supportive welcome. What a long week last week became. Stayed with my daughter so I wouldn't be alone during the day and she could take me to my appointments. Forgot to grab my laptop when I went out the door. My husband works long hours and is struggling so much with his emotions and not being able to be with me during all this. Had to reassure him that I wouldn't be able to get this treatment if not for him and all his hard work. I had my first cycle of chemo and my first week of radiation. Did well on the first day, but wow, did Day 2 wipe me out. Day 3 wasn't too bad, except that's when my taste buds changed. I'm doing four 3-day cycles of Cisplatin/Etoposide and at least 30 days of radiation. The MRI came back clean, as well. I am def. limited stage at this point. I felt like I hit the lottery when my oncologist told me the only thing in my head was my brain, lol. Love that shirt, Susan. My daughter chopped off my ponytail, but then my kids said I should leave my hair short for a week because it's been so long since they've seen me with hair that short. I left it, but it's going bye-bye tomorrow. Bed head all day isn't a good look for me. My youngest still shaved his head in support. I'm just so thankful for all the support here, and that I found this site, but wish so badly that no one needed a place like this. This new diagnosis and knowledge is the scariest place I've ever been. Susan Cornett, Tom Galli, KatieB and 4 others 7 Quote Link to comment Share on other sites More sharing options...
Michele Posted August 13, 2017 Share Posted August 13, 2017 Sherri that's great your MRI was clean same as my husbands. He starts this coming week 2 nd cycle chemo and first round of rad .last night and all day today we spent time in hospital because he started a fever.he was doing so good before that. He is all better now will see how round 2 does. Enjoy your haircut! Best wishes Michele SherryZ, Pegi and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
KatieB Posted August 15, 2017 Share Posted August 15, 2017 Sherri, sounds like you have a good treatment plan and a great family supporting you. We remain here for you too. Keep posting, It really does help. Best hopes, KatieB Tom Galli, SherryZ and Pegi 3 Quote Link to comment Share on other sites More sharing options...
Daughter74 Posted August 19, 2017 Share Posted August 19, 2017 Sherry, I'm the daughter of a patient but I just wanted to say I'm thinking of you and hoping things go smoothly for you with your treatment. I'm so glad to hear your disease is limited. Stay strong and positive. I'll be sending you and everyone here my love and positive thoughts too! <3 Tom Galli and SherryZ 2 Quote Link to comment Share on other sites More sharing options...
Wheezer Posted September 10, 2017 Share Posted September 10, 2017 It is a whirlwind of tests and drs once you know you have cancer - there is no wait and see. I had a PET scan and a biopsy all within a week or two after learning I had cancer - I was lucky and always have felt guilty that I cheated cancer - I took an easy way out and had three very strong doses of radiation within 12 days from start to finish. The object was to kill the cancer and the shell of the tumor would shrink. Ha Ha - its been over a year and the damn thing has shrunk that much or disappeared. Tom Galli and SherryZ 1 1 Quote Link to comment Share on other sites More sharing options...
SherryZ Posted October 31, 2017 Author Share Posted October 31, 2017 What an incredible and scary ride this has been. I'm sorry I haven't kept up to date here. My husband and I decided that it would be best for me to stay with my daughter during my treatments and she doesn't have the internet. I am not very good with typing on my phone and I've been experiencing some vision changes throughout my treatments. I finished my last chemo cycle a little over two weeks ago. I can't believe it's over. I've handled my treatments fairly well. I've needed Neupogen shots in the second week after each cycle but didn't need to get blood until this last cycle. My hg went down slowly each week but didn't reach danger levels until this past cycle. I only needed one unit. The nurses made it sound like I was going to feel better by the end of the day but it's taken four days to actually feel a change. I finally received my test results this morning and now I know why it took so long. Everything they check was low, so I'm surprised it didn't take longer to recover. I feel really good today, though. Aside from the blood counts, the only other problem I'm having is my lung feeling like it's been cut in half. It's right at the tip of my ribs and it makes it hard to sit right. I am not scheduled for any restaging/followup scans until the end of November, which is seven weeks from my last cycle. I know that my tumor had shrunk by half, halfway through treatments but now it's just a waiting game to see if that progress continued. This waiting is scarier than anything. Now I'm back home, and everyone is comfortable allowing me to take care of myself during the day. My daughter and husband make sure they call or text me at least once throughout the day. I'm glad this place is here and now I have the experiences to help others...and people to help me as I need it. Thanks for listening. KatieB and LaurenH 2 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted November 1, 2017 Share Posted November 1, 2017 Hi, Sherry. Now you move on to your new "normal" - filling the days between scans with thoughts of anything BUT scans. I am keeping my fingers crossed for continued good news with your next scan. SherryZ 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 1, 2017 Share Posted November 1, 2017 Sherry, Great news on completing treatment. Make it a point to enjoy the holidays. Stay the course. Tom SherryZ 1 Quote Link to comment Share on other sites More sharing options...
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