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 A blog of no uncertain musings. What goes on in my mind is often a source of wonder to me. |
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My mind and my life are wonderous things ... as are yours, I'm sure. I have more slips of paper and pages of notebooks with musings and thoughts than I really know what to do with. Someone, actually several someones, have suggested I start a blog ... or a journal as a means of focusing some of this mental energy. To be honest, I don't even know what the difference between a 'journal' and 'blog' is--or if there even is a difference. Read on, my friends, and you can judge for yourself whether it even matters. And so....  I'm JACE. Yep ... that's me! And somewhere in all my writings my last name may be posted. But I'll just leave it at Jace for right now. I'm 70 years old and heading full tilt to 71. It's strange that while I'm going through some rather serious medical issues, I still consider myself to be in the prime of my life--pretty good shape physically AND mentally, though I don't run for competition anymore  . I love to ... dang, if I put this stuff here, I won't have anything for my blog.Guess you just have to be patient until such stuff leaks out.  Perhaps 2025, having embraced my retirement, will see more participation in my journaling efforts. Well, one can hope.... |
| This morning, a couple men from my wife's church are meeting to move the upright piano out of the choir balcony. Using the stairs are out of the question as they are not wide enough and there's a 90-deg turn at the bottom. So, it's remove the railing and over the edge it goes. They are renting a lift. And my wife wants me to help out. I'm thinking that moving a piano was not on my surgeon's mind when he lifted my restrictions earlier this week. Come to think of it--it might be fun to watch. |
| Two days ago, my surgeon lifted my surgical recovery restrictions ... officially, that is. Yesterday, being my first full day of freedom, I embraced the lifting fully. After all it's been six weeks--forty-two days. He DID say six to eight months for full recovery. I guess I overlooked that part. I returned to all the things I used to do. My wife wanted to use the hot tub, so I removed the top and replaced it when she was finished as before. Helping to clean up the kitchen after dinner, I put away the air fryer, which must weight 25 lbs. I cleaned the riding mower deck (we do have a chain lift to help raise the front end), and I raised my walking distance from a mile to a mile and a half. A pretty normal day for me in the past. I woke up this morning ... pretty sore. I decided to use the hot tub for these tired muscles. Even showering today was a real chore. You really take using your arms for granted. Yep, today is a television day. Query: How many reading this blog have had a situation whereby physical restrictions were placed on you for a period of time. and when they were lifted, throw caution to the wind and jump fully into everyday doings? |
| My wife and I met with my surgeon, Dr. N., yesterday morning after having blood drawn. The draw seems to be standard for these doctors before any major meeting, something with which I've come to terms. I still hate needles. My wife, I should add, has been a faithful trooper throughout the trips to the hospital, the tests, the surgery and my slow recovery. Thanks, Babe, I love you. Dr. N. didn't beat around the bush--he stated that he had removed every bit of cancer that he could see using the equipment at hand. He admitted the possibility that some cells too small to be detected at that time might still exist. Such potential pockets would be monitored by periodic scans, one of which I have scheduled for 6 Jun. Despite the fact that my type of cancer has not been clinically tested for immunotherapy (see "Some Good News"  for details on this topic), he said that as long as I can tolerate the therapy, I should take advantage of it. And they are still looking into the clinical trials for my specific cancer.He freed me of my restrictions (lifting weight limit and resuming normal activities) though he said it would still take six to eight months for full strength to return. Also, my occasional pain would continue to lessen over that time. Yeah, that's good. My good friend (my daughter's husband's mother) who's going through cancer treatments of her own and who has been a tremendous source of comfort and a role model, offered to show me her before and after treatment scans so that I would know what to look for in my own. What an improvement for her scans! I must get copies of my scans. For now, the future looks good. Hell, I wouldn't have it any other way.  A special thank you to all who have followed this journey and who continue to support me with your well wishes and positive comments and prayers. They DO help. |
| People have been searching for sources for most of history--the source of homo sapiens on the African plains, the source of the Nile River--and for me, the source of this kidney cancer. Why did I get this particular cancer? I seem to have no family history for kidney cancer. Lung cancer, yes; kidney cancer, no. And these two forms seem to have little relationship with each other. And of the four persons in my family who died from lung cancer, heavy smoking was involved with all. I found a link online to WebMD’s “A Guide to Kidney Cancer.” An interesting guide, indeed. The main points of who might get kidney cancer include:  Be between 50 and 70. Check, but hardly conclusive. Men are 2 to 3 times more likely to get it than women. Check, again not conclusive. African-American people have a higher chance of getting it than other groups. Non-check. Having high blood pressure. Non-check. Having a family history of kidney cancer. Non-check. Smoking doubles the risk. Non-check. Being overweight or obese doubles the risk. Non-check. Exposure to certain substances at the workplace such as trichloroethylene. Ah, the light comes on. Trichloroethylene (or TCE) is a colorless, synthetic solvent found in certain consumer products including adhesives and wood finishes and stains. While it can contaminate air, soil and groundwater, I think it’s safe to say, my association with TCE came in the form of the finishes I used in my woodworking business over the past 35 years. No matter how careful one can be using safety equipment--masks, respirators, and proper ventilation--30-plus years of association has to take its toll. My surgeon tells me that tumor may have been growing for several years, meaning it took almost 30 years to manifest within me. Of course, this is all conjecture on my part. I believe TCE to be the source of my cancer. Yet, I wouldn’t have changed my vocation for anything. I literally had the best job … ever! I did what I enjoyed, and I was very good at it. That’s my story, and I’m sticking to it. |
| Had another phone call from my Oncologist, Dr PN, yesterday afternoon. She verified that the original biopsy that determined I had kidney cancer wasn’t from a lymph node, but from a branch off the actual tumor. She reiterated that moved me from Stage IV to Stage III, which opens additional treatment options, including possible Clinical Trials. Apparently, there is a National Oncology Program that provides information regarding treatment plans and potential clinical trials. Dr PN is following up with them about my case. She tells me all this is good news; I am cautiously optimistic. She's scheduling me for another of the same scan that diagnosed my cancer for comparison purposes before my first immunotherapy treatment on Jun 12. At this point, testing is much better than surgery. The other bit of good news is the consult request for genetic testing bore fruit much earlier than I was told. I’ll be doing a video conference call with that office in mid-Jun versus the Oct-Nov timeframe I was originally told. Now I have to piece together my family’s history of cancer before the call. I have an aunt--my dad’s sister--who is about ten years older than I. She is the only person in my immediate extended family still alive (leaving me the next oldest, I might add). A sobering thought to realize I’m the oldest of my line. Anyway, I hope Aunt K can fill in some medical history gaps. For anyone reading my blogs, consider doing your own deep dive into your family history, especially if you still have lots of family available. Time goes by fast, and everyone should know about their family history. I’m not talking about just medical information. My Dad passed 16 years ago and I’d give anything to talk with him. Life happened and we didn’t talk as much as we shoulHad another phone call from my Oncologist, Dr PN, yesterday afternoon. She verified that the original biopsy that determined I had kidney cancer wasn’t from the lymph node, but from a branch off the actual tumor. She reiterated that moved me from Stage IV to Stage III, which opens additional treatment options, including possible Clinical Trials. Apparently, there is a National Oncology Program that can provide information regarding treatment plans and potential clinical trials. Dr PN is following up with them about my case. She tells me that is good news; I am cautiously optimistic. I will be scheduled for another of the same scan that diagnosed my cancer for comparison purposes before my first immunotherapy treatment on Jun 12. At this point, testing is much better than surgery. The other bit of good news is the consult request for genetic testing bore fruit much earlier than I was told. I’ll be doing a video conference call with that office in mid-Jun versus the Oct-Nov timeframe I was originally told. Now I have to piece together my family’s history of cancer before the call. I have an aunt, my dad’s sister, who is about ten years older than I. She is the only person in my immediate extended family still alive (leaving me the next oldest, I might add). A sobering thought to realize I’m the oldest of my line. Anyway, I hope Aunt K can fill in some medical history gaps. For anyone reading my blogs, consider doing your own deep dive into your family history, especially if you still have lots of family available. Time goes by fast, and everyone should know about their family history. And I’m not talking about just medical information. My Dad passed 16 years ago and I’d give anything to talk with him again. Life happened and we didn’t talk as much as we should have. A huge regret! Perhaps I didn’t know the questions to ask then. Perhaps the space between us had grown larger … and not just the physical distance of half the country. I still should have made the effort. Don’t wait! |
| I'm constantly reminded that no one really goes on a journey alone. Okay, I know that is not true. Far too many folks face their troubles in life alone. That is an awful truth. The fact that I can make that initial statement, is a testament to those in my life, and is a blessing I don't take for granted. And for all of them, I'm both grateful and thankful. I've written a number of blog entries about my journey with cancer more as a therapeutic way of coping with the immensity of my current situation. I suppose I've had trials in my life like most people have at one time or another. But this trial seems bigger than the others. And yet .... I met my oldest daughter's husband's mother about five years before we became family through marriage. Ms. B (name withheld for privacy) is an out-going, full of life lady who always has something positive to say about those she meets. Her smile and humor is infectious. Thought a couple years younger than I, she was diagnosed with cancer about a year before me. She had a rougher go of things that I did. Yet, she's maintained her composure throughout and is a huge reason for me coping with my cancer as well as I have. Dealing with cancer is an intensely personal odyssey. There are so many different forms. Despite her cancer being different from mine, she has been able to share a lot of wisdom with respect to dealing with cancer in general and doctors as they treat my illness. Ms. B. and I have texted and talked weekly since my diagnosis. She has been a God-send to me. I only hope our give and take has provided some solace to her as well. As I think back on our friendship, I remember a story about her. When her son told her of his intention to ask for my daughter's hand in marriage, she told him that no matter what happens in the future, my daughter would always remain her friend. Whether through good times or bad, that kind of loyalty should never become out-dated. |
| I guess it's inevitable that whenever one gets cancer, the talk of genetics comes into play. Did I have genetic markers within that predisposed me toward one form of cancer or another? My Oncologist raised that topic during her call a few days ago. She is going to request a consult for genetic testing to see if I was somehow prone to getting my particular form of kidney cancer. Apart from some occasional lower back pain, which many people have at one time or another, I had none of the routine symptoms for my cancer. One of the many questions I had to answer during all the tests I had leading up to my cancer diagnosis was a family history of cancer. To my knowledge, only lung cancer occurred in my family. My father and younger brother died from it both smoking heavily until they passed. So in six months--that's how long it takes just to get the consult--I'll be tested. I have no reason now to believe I was genetically inclined toward kidney cancer. But I need to be sure I didn't pass some marker to my children. More tests .... |
| I received a call from my Oncologist yesterday with some good news. At least, she said it was good news. And it came in a roundabout manner. The last time we spoke a week ago, she said that the final results of the surgery stated a couple lymph nodes associated with the right kidney were removed with the kidney and tumor. However, none of those lymph nodes removed were cancerous. This information was at odds with the biopsy I had four weeks before my surgery, which stated the lymph node checked was cancerous, thus setting me on that road for surgery. Having cancerous lymph nodes also came with a Stage 4 pronouncement though it was not considered terminal. That is good. The call yesterday resolved what my doctor called a discrepancy. Now, I’m thinking a discrepancy is being a few dollars off in your check register. She explained the surgeon removed any and all cancerous material (including the kidney and tumor). The lymph nodes that were removed were attached in such a way that required their removal, but that they were non-cancerous. Negative lymph nodes downgraded me to a Stage 3 diagnosis. That is very good. Apparently, the downgrade might allow me to take part in some Clinical Trials for my specific form of cancer. There are two types of kidney cancer—a clear small cell carcinoma and a non-clear small cell carcinoma, also called Papillary renal cell carcinoma. I have the latter. And that’s a bad news-good news thing. The bad news is all the data available on using immunotherapy to treat kidney cancer is for clear small cell cancer. Ain’t got that. I have to wonder why there isn’t data on my form of kidney cancer. I can’t believe I’m an odd man out here. The good news is that doctors and researchers are trying to start clinical trials for using immunotherapy for the non-clear} small cell cancer. And I would qualify for those trials provided VA approves, which may be a bigger ask than she let on with cuts happening all over the (government) place. In the meantime, I have been scheduled for immunotherapy treatments anyway. There shouldn’t be any side effects like chemo and radiation have. Radiation would have been warranted if cancer was discovered in my lymph nodes. Thus, I remain hopeful and positive the right things will fall into place. I believe "I'm A Closet Pessimist" might no longer apply to me. |
| Words related to me by a wise lady who is also going through her own cancer journey. Though it has been several days since I blogged about my journey with cancer, that journey has never been far from my mind. My wife and I celebrated Mother's Day by attending church with her two grown children, and then spending the afternoon enjoying a picnic lunch and hiking at a local State Park. It was three and a half weeks since my surgery and I figured if I took things easy, I'd have no trouble. After all, I had been walking as part of my rehab every day. It's two days later and I'm still feeling the effects of Sunday. I expected my pain to be lessening with time. A question for anyone reading these words and who have experienced a journey with cancer: If you had surgery, how long was your recovery period from the surgery? Not the cancer, which may still be relevant to your situation. Yes, I realize every person will have a different experience, and that my question is probably meaningless to my situation. But I thought, who knows? My oldest daughter's husband's mother, who is a few years younger than I, has been fighting her own cancer diagnosis for a year or so. She has a different cancer that required chemo after her surgery. While our situations are different, we talk to each other regularly. She offers advice about dealing with doctors, who may not always have your needs in mind. She means, they are there to destroy the cancer within you, and are seeking the most definitive way of doing that. The definitive method tends to wreak havoc on one's body and messing with one's mind. Don't be afraid to recover before moving on, she tells me. My first post-surgical appointment with my surgeon will be two days shy of six weeks after the surgery. I'm a little concerned whether I'm allowing my recovery to happen as it should, or if I'm pushing myself more than necessary. I was told six weeks for recovery after major surgery, so I'll probably get yelled at. . There's a lot of healing within that must take place. Beyond drinking plenty of water (only have one kidney now and must stay hydrated to flush it properly, I cannot lift more than ten pounds while my mid-section muscles repair themselves. Consider me surprised at how many things weigh ten pounds that I took for granted as easy to pick up and move.I'm unable to do even simple tasks around the house that were easily completed before. I gotta say, that sure hits the ego. It's hard to let such things go. Hopefully, the next two weeks recovery goes easily. |
| Some thoughts about the surgery I underwent three weeks ago to ostensibly remove the cancer with which I was diagnosed. First, confronted with such a diagnosis and having no frame of reference for anything as serious as this happening in my life, I had no idea what questions I should be asking. Of course, the main questions that occurred to me were will surgery remove all the cancer, and what are my chances for survival? Beyond that, I had nothing. Questions I'm asking now include: How long is a normal recovery period? Up to six weeks before my body heals, and I regain my strength. I can attest that after three weeks, I am still pretty weak. Part of my rehab is walking, which helps me regain strength and guards against pneumonia. The first week I could walk about 5 minutes at a time twice a day. Week two I could manage two ten-minute walks. I managed a 20-minute walk today. No running until after the six-week recovery, and only then if no pain exists. Can I travel within the scope of prescribed restrictions? I've noticed I don't travel well in a car for long timeframes (more than an hour) at the three-week point. With full healing, there should be no restrictions for traveling by car, boat or plane. Good to know. What happens to the space inside me not that a fist-sized tumor and my right kidney have been removed? Do other organs re-locate to that vacated space? It turns out, no. Thinking of the adage, Nature abhors a vacuum, I thought some aspect of the organs located in my inside middle region would gravitate toward the opening vacated by those items surgically removed. That is NOT the case. Apparently, scar tissue is forms in this interior area--hence the longish recovery period. My abdomen will continue to be tender and subject to pain doing small tasks that use those mid-section muscles until the scar tissue is fixed. How long before I can carry on with routine operations such as getting a massage, or using the hot tub? Apparently that six-week recovery period covers most things that were taken for granted before surgery. How will my eating and drinking habits have to change with only one kidney? I need to focus on a healthy, balanced diet, staying hydrated, and limit my salt intake. Unfortunately for me, the healthy diet includes a moderate protein intake. I’ll have to change that rather heavy red meat diet I enjoyed in the past, as well as all the other items with protein I like. Processing extra protein can put excessive strain on the remaining kidney. My other hardship—I suppose hardship is too strong a word—is drinking a lot more water than I’m used to. I’m told water is better for hydrating than sweet iced tea (my fave), soda and juices, all which contain sugars. Going on four weeks since my surgery and the water is growing on me. I’m certain more questions will occur to me as time passes. But with all that’s happened to me this past five months, I still feel as invincible as ever. I suppose that’s a good thing. |
| NOTE: I've decided NOT to require a PassKey to access my Blog posts regarding my cancer journey. My Blog is rated high enough for that. I've removed the PassKey from my previous entry as well. Read at your own comfort level. My phases as best I can determine (with updates from my Oncology appointment yesterday): Discovery: I had a pain in my abdomen in mid-December. It lasted several days, long enough for me to schedule a visit to my doctor. My first test was a simple Ultrasound of my abdomen. One test led to another, and to another. An interesting note: After I’d made the appointment with my doctor, the pain went away and never reappeared. Determination: Over the next 11 weeks I had seven tests ranging from that Ultrasound to a Biopsy of a lymph node attached to my right kidney. I wondered aloud why they would biopsy a lymph node rather than the tumor or even the kidney. My doctor told me the lymph node would provide the required information with less potential complications for accessing those other areas. The biopsy took about half an hour and was completed through the back under a local anesthetic. At least, I was told it was a local—I didn’t remember any of the procedure. I had an appointment with Oncology yesterday (8 May), and learned that Pathology determined that the lymph nodes that were removed during my surgery were non-cancerous. Yet the biopsied lymph node WAS cancerous. What happened to that initial lymph node? That’s a question I’ll be addressing with my surgeon this morning. Diagnosis: That battery of tests coupled with a joint Oncology-Urology Cancer Board meeting resulted in a diagnosis of Papilary Renal Cell Carcinoma. The tumor which was attached to the right kidney was large by their estimate--about 7.5 cms, which earned it a Stage 4 pronouncement. It sounded like the end of the world. During surgery it was discovered that the tumor was actually 20% larger than the scans originally indicated. Discussion of options: There were two. Medical, in which I would receive immunotherapy treatments in IV form every six weeks with re-testing every three months. This drug was not Chemo nor radiation, and was designed to shrink my tumor to be more easily removed by surgery. Obviously, the other option was surgery. In my case, this surgery would be a right robot-assisted laparoscopic radical Nephrectomy—which is the removal of the right kidney, the attached tumor and retroperitoneal lymph node dissection. Immunotherapy treatments would follow to reduce or hopefully eliminate any remaining cancer. Decision--medical or surgical: To determine the best option, I had a CT Chest scan to determine whether the cancer had spread to my lungs. It had not. Thus, surgery was the best option--removing the right kidney, tumor and cancerous lymph nodes before they spread farther. The surgery was done on 17 April and took four to five hours. My surgery was done at the University Hospital for several reasons. They were better equipped than the VA Hospital across the street having the robotic surgery equipment available. My surgeon was extremely familiar with that equipment. And they had a pre-eminent Vascular Team available 24/7 should a situation arise in that area, which given the tumor’s location was possible. Incidentally, my first thought at being wheeled into the robotic surgical operating room was how can I even fit into the room? Ther was SOOO much equipment. And where will the doctors be? It was very crowded. And cold. Not cool … COLD! I had wanted to hit 95 (counting backward from 100). The mask was put on me and I never had the chance to say 100. I never saw the room again. I woke up some six hours later in a Recovery room. My surgeon told me the reason for using robotic laparoscopy was to reduce the trauma to my abdomen by using four small ¾” and one larger 3” incisions to conduct the surgery versus opening my entire abdomen. Robotic surgery also lowers the recovery time from half a year to four to five weeks. The smaller incisions were used to literally blow up the skin like a balloon in the abdominal area for the surgeon to work his magic with the robotic implements. I almost wish I could have watched a video of the surgery. Almost. I’m afraid the med-speak for how he was going to remove a kidney and the tumor which were larger than the 3” incision went right over my head. But as my surgeon was arguably the best for this type of procedure in the state and had done hundreds of successful operations for this type of cancer, I had no objections. Therapy: Yesterday was the first meeting to determine how this phase will develop. I know the basics of how the immunotherapy will work. But I don’t know how it will impact my life over the next six to nine months. What side effects, if any will I experience? Will I be able to travel? Will the meds interfere with normal day-to-day functioning? And so on …. Meeting with my Oncologist yesterday, I asked those questions and more. My immunotherapy regimen will begin in mid-June and last for one year with scans every two to three months to determine its efficacy. Each appointment begins with blood tests, then a phone or face to face meeting with my doctor, followed by administering the IV immunotherapy via IV, which takes about an hour. Looks like my next year is planned out. Oh yeah, the questions. I will be able to travel in between the appointments. My every day actions should be unimpaired. That’s important as my wife and I are retired and enjoy getting away. The therapy is supposed to have few, if any side effects. I was cautioned that it may take up to six months to recover my full strength. And I have certainly noticed a decided weakness at doing even simple tasks. That’s hard to get used to. I did get one good piece of news regarding the cancer stage. My Oncologist stated I was not a Stage 4, but Stage 3. From my standpoint, I’m not sure how much better I should feel about that … but I suppose it’s a step in the right direction. Time to post, and then call my surgeon. |
| NOTE: I’ve purposely omitted the names of the doctors undertaking my care for privacy reasons. Taking yesterday’s blog entry in conjunction with this and tomorrow’s entries, I hope to complete a snapshot of my fight against a foe trying to take control of my body. I sometimes wonder if cancer is mindless, operating without active knowledge. Or, if it is an evil entity eminently designed to destroy. Surely, I can see no benefit to it. The fact is I had no symptoms that are associated with Renal Cell Carcinoma. My surgeon essentially explained that some things can’t be explained. A small consolation to me. He added that this type of cancer is one when caught early, which he said it was, is eminently survivable. I asked him how long the tumor had been growing. He said that such a tumor would grow about one to one and a half centimeters per year. ‘Holy shit,’ I thought. 'That's early?' I had a tumor the size of a small fist attached to my right kidney potentially encasing the inferior vena cava (IVC), a major pathway for blood from the kidney to the heart. It must have been growing for years--at least five. The word ‘complications’ screamed at me as he spoke about the operation. Scans did not fully show the extent the tumor had invaded my body. In fact, it wasn’t until the first incisions were made that the surgeon, through robotic eyes, was able to see the true scope of what lay ahead. The tumor did, in fact, extend down along the IVC. Additionally, a cancerous lymph node was attached to the IVC. Both items required special care. The IVC is a large vein that carries deoxygenated blood from the lower and middle regions of the body to the right atrium of the heart where it is reoxygenated and sent forth. Sounds simple, huh? It must have been. My surgeon removed the errant lymph node from the IVC along with the tumor and right kidney, which was unable to be saved, all of which was sent to pathology for testing. Today, I have the next phase of my cancer treatment--a three-week post-surgery checkup. This checkup is not really about the surgery per se. This meeting is with the Oncology Dept. to determine what happens next with my treatment. I still have an upcoming meeting with the Urology Dept at six-weeks. Remember: Oncology deals with the medical side of my cancer; Urology takes care of the surgical side. The management of cancer is really nothing but a series of phases. I use the term management because cancer is a complex issue, rarely, if any, treated one time for a cure. My journey has included a number of phases. I suppose other people’s journeys will be different. I wrote about those phases before I penned the intro above. After reading what I had written, I felt some kind of intro was needed. Since I know my attention span is limited and I have a hard time reading very long dissertations at one sitting, I’m projecting that onto you and will post the phases tomorrow. Besides, I have a two-hour drive to my Oncology appointment. |
| My journey with cancer has not been baby-steps. I consider myself fortunate that in less than four months (from initial pain in late December to surgery in April) I've been afforded a good prognosis from my cancer for a full life. I'd heard so many stories of people being unable to be seen by a doctor for an illness, much less be treated. In my case, doctors of the VA Hospital (Columbia, MO) and the University (MO) Hospital were my champions. Tomorrow, I have the next phase of my cancer treatment--a three-week post-surgery checkup. This checkup is not really about the surgery per se. This meeting is with the Oncology Dept. to determine what happens next with my treatment. I still have an upcoming meeting with the Urology Dept at six-weeks. To clarify: Oncology deals with the medical side of my cancer; Urology takes care of the surgical side. The management of cancer is really nothing but a series of phases. I use the term management because cancer is a complex issue, rarely treated one time for a cure. I've broken my journey into phases. I expect other peoples' journeys will be different. I'll discuss these phases in a separate, more extensive entry. That entry will contain a frank discussion of my options and continuing journey with sensitive and possibly disturbing information. Thus, you'll need a PassKey for access. This will screen those who might be disturbed at the content. Contact me via email or IM if you wish access. |
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