tag:blogger.com,1999:blog-75222710298078757332024-02-19T08:13:59.621-08:00My Oh My Multiple MyelomaJHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.comBlogger76125tag:blogger.com,1999:blog-7522271029807875733.post-91861101597019822692010-02-06T20:59:00.000-08:002010-02-06T21:00:38.651-08:00Two Weeks of TeachingI find that when things get a little crazy, I hunker down and avoid the outside world. Silly, I know, because these are the times I need my friends the most. At my job, I am working with a very supportive group of educators. I’m working on learning the school attendance and grading programs. Junior High kids are a lot of fun. They are at a unique time in their lives.<br /> Regarding the radiation – it must have done it’s job, because the pain in my tail bone has gone away. I still experience weakness in my legs, however. I’m only 4 weeks out in a 6-8 week recovery period. This Monday, I have an MRI that will give us more information. My February visit with Dr. Wolf in San Francisco was pushed back to March. I hope we know more about this leg strength thing. I’m still going off the steroids very gradually.<br /> My main issue these days is energy. I need a great deal of energy to teach. I covet your prayers for strength. I’m pretty focused on teaching and grading papers!Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com8tag:blogger.com,1999:blog-7522271029807875733.post-19656773169193470762010-01-20T21:22:00.000-08:002010-01-20T21:40:52.344-08:00Fun Friday 1-15-10What a great day! I spent the full school day at my new assignment, Kastner Intermediate School. We started at a staff meeting where I saw many friends. I was introduced by the principal to all the teachers. During the course of the day, I was able to observe each of my classes with their American History teacher and in their English class. I will be teaching the English/Language Arts curriculum. The students know their current teacher is retiring and that I will be starting at the semester break. I’ve spent several days on campus, so the students are becoming familiar with me being around. This time before I start is so cool because I can visit the other teachers’ classroom and observe their teaching and management styles. Once I start full-time in my own classroom, I won’t have that opportunity.<br /><br />The eighth grade teachers I work with are a great team. They have been very welcoming. We all went to Rubio’s for lunch. One of the teachers has a cabin at Huntington Lake, just across from our “resort,” Lakeview Cottages! She asked if I had seen the article in the LA Times, I said yes that’s us! I felt famous!<br /> <a href="http://www.latimes.com/news/local/la-me-huntington-resort9-2009nov09,0,3596632.story"><span style="color:#ff0000;">Link Here<br /></span></a><br />In between visiting the classrooms I was able to meet with my Learning Director (my direct boss), photo copy some information, work in the cluster office, get Friday Spirit shirts, and become familiar with the campus. Everyone has been very kind and helpful.<br /><br />At the end of the school day I waited in the office for Jessica to pick me up. I’m carpooling with Jessica because she is substitute teaching and is on the same schedule as me. While in the office, the principal loaned me the books for our discipline policy, and I got to visit with the office workers. I am so excited to be at Kastner. I had plenty of energy, and even though I have some mobility issues, I know I’m ready for the job. I believe that God dropped a huge blessing in my lap, and I couldn’t be happier!Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com6tag:blogger.com,1999:blog-7522271029807875733.post-76769183573998656622010-01-20T21:09:00.000-08:002010-01-20T21:22:00.195-08:00San Francisco Tuesday, January 12Monday evening, George and I packed up Jessie’s VW and headed off to San Francisco. I felt so much better than I did the last time we made the trip. That was the trip when I was admitted to the hospital for 3 nights. We met with Dr. Wolf and one of his practicing doctors. So here’s the scoop.<br /><br />Dr. Wolf doesn’t really like the terms remission (no indication of cancer cells) and relapse (cancer cells detected). Remember that with Multiple Myeloma a patient is not cured, but rather you manage the cancer for the rest of your life – which for me could be 20 more years. After the Stem Cell Transplant, Dr. Wolf indicated I still had active cells in the thecal sac (tail bone area). Since that is a major nerve site, I developed severe pain and lost strength in my legs. Over the holidays I had 12 sessions of radiation aimed at the tailbone area. Now it takes 6-8 weeks to heal from the radiation and to see if we got the bad little buggers. I’m at 2 ½ weeks in that healing process now. I have an appointment with Dr. Wolf next month at 5 weeks. He wants to see an MRI then, so hopefully we can see if there is any or no growth. Sometime soon I will start the management chemo which is a low dose chemo tablet taken regularly. The chemo pill has few side effects and shouldn’t disrupt my teaching or other activities.<br /><br />My Fresno health team is great. I have an oncologist, a radiologist, and a clinic full of happy, professional nurses and workers. Dr. Wolf, at UCSF, is the leader in knowledge and new treatments for Multiple Myeloma. I am so blessed that I get to be part of his patient load. It was so good I was referred to him. We will see him present at the Leukemia & Lymphoma Society Conference in San Francisco next weekend. We will be visiting both a friend we met by blog and with Susan’s cousin. We should have a good time. I feel well taken care of!Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com2tag:blogger.com,1999:blog-7522271029807875733.post-57416334474790137822010-01-08T15:29:00.000-08:002010-01-08T15:30:13.888-08:00Coming up….My original Fresno Oncologist is leaving the St. Agnes Cancer Center, so I have chosen to stay with the group. I love the staff there – everyone is so nice and professional. I chose a new doctor - Dr. Hackett. He has experience with Multiple Myeloma – a real plus. I meet with Dr. Hackett on Monday, Jan 11, then we drive to San Francisco to See Dr. Wolf on Tuesday. <br />George and I have learned a lot since May! We are much more active about my care. I have learned that I need to keep copies of all documents and tests. I carry everything in a binder and sometimes my copy of things is the one readily available. I’ve also learned to get all the doctor’s e-mails so we can keep everybody in the loop. When I was in UCSF Med Center for the weekend, I started taking Dexamethazone 16 mg per day. My Fresno Doctors noticed that was a large amount to still be on and I needed to cut the dose back. So there was a plan for getting on the drug, but not one for getting off of it! You should see my face, it is so puffy from the steroid! <br />So please think of us as we drive to San Francisco next week. George is a trooper about driving me there – I’m glad he likes San Francisco because we’re spending a lot of time there!Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com4tag:blogger.com,1999:blog-7522271029807875733.post-47792694274167974132010-01-08T14:27:00.000-08:002010-01-08T14:28:16.760-08:00Radiation by SueGeorge did a really good job of explaining the whole radiation program. I met with the Fresno Radiologist the next day after we returned home. I had 12 sessions aimed at my tail bone. I went in on Christmas Eve and New Year’s Eve. Everyone at the St. Agnes Cancer Center was so nice – I really felt cared for. It was also neat to network with the other women patients. Most of the patients had breast cancer, I was the only one I met with Multiple Myeloma. Yesterday, Thursday, Jan 7 was my final day. What I didn’t realize about radiation is how much it takes out of me. I have NO strength! I cannot step up a curb unassisted. I cannot step my leg into the passenger seat of a car. I can’t see or feel the connection between radiation and strength loss, but it is clearly there. The radiation folks say it will take 6-8 weeks to regain my strength. I am starting back teaching full time in two weeks! Yikes! Calling all prayer warriors!Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com0tag:blogger.com,1999:blog-7522271029807875733.post-58676077614127663802009-12-14T14:09:00.000-08:002009-12-14T15:51:47.528-08:00Radiating Love All Around - by George!Myeloma patients take note: Multiple myeloma is a unique cancer and you will not be well served in your treatment decisions if you do not allign yourself with a doctor who specializes in treating myeloma.<br />
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Sue was referred by her regular doctor to a very nice cancer doctor in Fresno. That doctor, an oncologist without experience treating myeloma, upon properly diagnosing multiple myeloma, referred Sue to <a href="http://knol.google.com/k/jeffrey-wolf-m-d/jeff-wolf/H6Ta_gV2/jVIN5w">Dr. Jeffrey Wolf</a>, a specialist in treating multiple myeloma who is practicing at UC San Francisco Medical Center. That referral was the best thing that could have happened under the circumstances.<br />
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There are a number of reasons why I say it was the best thing. Foremost among them from my perspective is that I have enjoyed these all expenses paid vacations to San Francisco. Foremost among them from Sue's perspective is that Dr. Wolf really knows multiple myeloma. As a bonus, he's a pretty nice guy.<br />
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Sue has talked to at least six hematology/oncology doctors in the past ten days about the pain she is experiencing. About ten days ago the Fresno oncologist misdiagnosed Sue's pain as osteoarthritis and prescribed Vicodin. The pain persisted and increased, and Friday Sue paid a visit to Dr. Wolf. He immediately hospitalized her and ordered a new MRI. The new MRI showed inflamed nerves (nerve roots) radiating out of the thecal sac at the bottom of the spinal cord (in the sacral area near S1, S2, and S3). As I understand it, the thecal sac is like a, well, a sack, that surrounds the spinal cord. Several doctors from this hospital stopped by Sue's room to discuss the inflamed nerves and possible causes. But none of them were certain of the cause.<br />
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Enter Dr. Wolf. He was off Saturday and Sunday but back on the job today. Apparently unknown to a lot of people, even medical professionals working in the bone marrow transplant/stem cell transplant department of a major regional teaching medical hospital, was this important, arcane fact: Chemo therapy can kill all (or mostly all) of the myeloma cancer cells in your body except in two "sanctuary" areas of the body. Those are: (1) in testicles; and (2) in the thecal sac. Thus, and particularly in regard to the area inside the thecal sac, the blood tests may show the myeloma to be in complete remission (CR), but there can still be active myeloma cells within the thecal sac.<br />
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Dr. Wolf is quite certain that is what is happening with Sue, and that it completely explains her recent symptoms. Further, the only way to treat these cancerous cells within the thecal sac is with radiation. Fortunately, the radiation will be carefully directed to cause minimal tissue damage, and the nerves can practically take unlimited radiation without damage, while the myeloma cells are very sensitive to the radiation and should be totally eradicated by this treatment.<br />
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Sue is now (circa 2 p.m.) undergoing the PET scan which will show Dr. Wolf where all the live colonies of cancer cells are within the thecal sac. He will then be in direct contact with the radiation oncologist in Fresno to indicate what needs to be done. Sue is being discharged this afternoon and will be going back to Fresno with me today. She'll start radiation therapy in Fresno as soon as possible.<br />
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Once again, our thanks go to all of you for your prayers and concern. Additionally, special thanks to Jerry, Ermintrude and Pat for your comments on the issues of radiation and PET scans. I raised your concerns with Dr. Wolf. Pat, you are correct that the PET scan is the only way for Dr. Wolf to identify where the cancer cells are clustering. Jerry and Ermintrude, this radiation will be very directed and, for better or worse, it is the only way to kill myeloma cells within the thecal sac.<br />
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So off we go, radiating love all around.by George!http://www.blogger.com/profile/17235075120099550324noreply@blogger.com4tag:blogger.com,1999:blog-7522271029807875733.post-61979417359991099852009-12-13T23:19:00.000-08:002009-12-13T23:27:37.403-08:00Suki-Yaki Doctor Talkie - by George!Today was another cloudy and chilly day in San Francisco, but the rain stopped and the sun came out in bits and patches. Chilly with patches of sun, but not real warm sun, kind of describes the day in all it's particulars. Our blog buddy, Becky L, warned us early on after the myeloma diagnosis to hang on because this would be an up and down ride. Well, Becky, you were right.<br />
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Sue was napping this afternoon and I was bored from being cooped up in a tiny hospital room while the City was doing its Sunday thing, so I decided to take a walk. I walked west on Irving to 9th Avenue and encountered the Thai Noodle Cafe. There's nothing like a big bowl of steaming hot Thai suki-yaki soup (not to be confused with Japanese sukiyaki). Matched with hot sake wine and soft Thai music, it'll take the chill off any day. It'll melt your stress and put you in a meditative state of mind. Or is that a medicated state of mind? Oh, never mind. Moving on.<br />
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I bought a Starbucks cranberry bliss bar on the walk back to appease Sue and got back to the hospital just in time to hear the latest from the on-duty doctors. Sue's midnight MRI Friday night revealed inflamation in the nerve roots (the area where nerves leave the spinal cord) in her lower back (regions S1, S2 and S3). This inflamation extends out on both sides of her sacrum, and is the probable cause of her back pain and the probable cause of her muscle weakness in her legs and the probable cause of the increase in her neuropathy. The good news today was that there is no evidence in the MRI of a fractured bone and it does not appear to the doctors that Sue's symptons are resulting from a tumor or myeloma cell mass pressing on Sue's spinal cord.<br />
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There are a host of possible causes of the inflamation of the nerve roots, and some of those are not good. Well, they're all not good but some are worse than others. Some of the possible causes which have been discussed are: (a) the nerve damage is resultant from the Velcade (that's the same awful chemo stuff that caused Sue's neuropathy, but which also killed a bunch of the myeloma cells and stopped the original back pain); (b) a viral injury, possibly related to the shingles which attacked Sue a couple of times during her chemo treatments; (c) possibly the myeloma is acting up again in that localized area; (d) some of the lesions which occurred in Sue's pelvis and sacrum prior to chemotherapy treatment could be implicated. The doctor used some words I wrote down but couldn't understand or spell well enough to google. I thought he said something like "gimbray syndrom" but he dismissed it immediately as just talking out loud, so I left it hanging in my note book like a dangling participle.<br />
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The other good news is that, for now, the extreme pain Sue was experiencing is being controlled, they are treating the inflamation with steroids and that appears to be working, and they are continuing to investigate to find the cause of this new problem. The bad news is that Sue's not going home tomorrow, but I probably will. The other other bad news is that this guest chair "bed" they let me sleep on in Sue's room is killing my back. I'm going to have to apply to get some of Sue's pain medication if I have to sleep on this goofy thing too many more nights. Sheesh. Grand Hyatt king one night and couch rat the next. Like Becky said, up and down.<br />
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The doctors here have not ruled out radiation therapy. The plan is to put Sue through more tests tomorrow, including a PET scan (that's Positron Emission Tomography). Dr. Wolf is going to be around and back on the case tomorrow. We like Dr. Wolf. He's as comforting as a sheep's wool sweater on a chilly San Francisco day. Hmm. Maybe alpaca?by George!http://www.blogger.com/profile/17235075120099550324noreply@blogger.com5tag:blogger.com,1999:blog-7522271029807875733.post-61112709720950677002009-12-12T18:05:00.000-08:002009-12-12T18:14:43.608-08:00Really Good DayI just called mom, probably 6:45. She hadn't answered two of my earlier calls. When I DID get to talk to her she sheepishly told me that she had swiped the earplugs they gave her for the MRI. She said they were really good and had a cord <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">attaching</span> them so they <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">didn't</span> get lost. In her words "they're really nice." Anyway they had helped her get a good two and a half hour or so nap in this afternoon. I guess she was up late last night. They took her for an MRI last night between 11:00 PM and 1:00 AM all the regular people had gone home for the night but these people were called in special. In the morning, all the doctors came into her room. She said it felt like an episode of House. They had just had their pow wow, came in with hypothesis, doing strength tests etc. One side (I think she said left) is significantly weaker. Her spinal column is in tact, some of her nerves were showing <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">inflammation</span> and maybe this could be connected to the shingles she had early on in the diagnosis.<br />Mom says her pain is under control, they're giving her a medication called <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Dilaudid</span>.<br /><br />She says all of this stuff <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">that's</span> going on is affirming because these doctors are recognizing that the issues are real, and are seriously investigating the reasons and what can be done to fix them.<br /><br />This experience is <span class="blsp-spelling-error" id="SPELLING_ERROR_5">soooo</span> different from mom's last experience. She said she had a "really good day."<br /><br />Still no answers, but the detective work is going. Progress is good right?At least things are happening.JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com2tag:blogger.com,1999:blog-7522271029807875733.post-14205117116681540662009-12-12T09:42:00.000-08:002009-12-12T09:46:32.684-08:00Saturday 9:30 AMMy mother wanted me to reasure all her readers that :<br />She is still in general remission, but because her 13th and 14th chromasomes are also mutated her strain of Multiple Myeloma is much harder to treat. This is why Dr. Wolf wants to get to the bottom of this and figure out whats going on with the lesion in her bone. Granted this is still sort of an if and that's why they're doing the tests.<br /><br />Some good news is that they finally found a medicine for the pain. (Vicodin and Demerol werent really doing the trick.) She says it kicks in quickly but only lasts for an hour/hour and a half. It's important that they figure out how to manage the pain so she can com home for radiation.JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com1tag:blogger.com,1999:blog-7522271029807875733.post-43291935352558101862009-12-11T17:33:00.000-08:002009-12-11T17:59:24.677-08:006:00 PMThe Doctor in S.F. noticed some stuff in a past MRI and thinks it may be that OR that there could be a pocket of cells that didnt get killed. If this is the case she'll begin radiation.<br /><br />According to ther "This doesnt mean anything bad...I'm not sick...I just hurt."<br /><br />She says this situation is a lot different because she feels normal, just pain.<br /><br />When I talked to her on the phone at maybe 5:40 pm she said they had given her quite a bit of demerol. It didnt really help the pain, but she felt good. Haha. She says its nice to have people who know what theyre doing with the meds because she doesnt feel bad about taking more when other people are in charge.JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com1tag:blogger.com,1999:blog-7522271029807875733.post-58548144608544186642009-12-11T17:19:00.000-08:002009-12-11T17:24:04.184-08:005:21 PM FridayMom has been admitted to UCSF, they will be doing tests tonight and through the weekend. My dad is coming home as neither of them were anticipating staying through the weekend.JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com0tag:blogger.com,1999:blog-7522271029807875733.post-63705156963788916552009-12-11T15:08:00.001-08:002009-12-11T15:08:43.067-08:00Bump in the RoadMom has been having a lot of hip/leg/back pain lately. It had been gettting worse. She figured theyed get it sorted out on her appointment in San Francisco, but didn't think it'd be anything big. Ijust got a text message from her saying that the "pain may be caused by lesion in sacrum. Admit to csuf med today. Not emergency, but timely. Pray that we figure it out. Please." Soooo that was quite the news. I'll be posting updates as I get them here.JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com1tag:blogger.com,1999:blog-7522271029807875733.post-43879603515277652582009-11-19T19:53:00.000-08:002009-11-27T16:01:16.449-08:00Group TherapyI have found that my healing is enhanced by my interaction with others. I also was surprised by the number of people in our church who were being diagnosed with cancer. My friend Deb suggested that we start a support group for people with chronic illnesses which would meet weekly at our church. Since September we've had about ten participants with about eight people on any given Tuesday. I've enjoyed meeting weekly because it gives us the opportunity to develop close relationships. While there are several different ailments represented in our group, we are able to discuss issues that we have in common. We share our concerns and pray for each other. Most evenings someone leads a discussion. If no one leads, we just talk.<br /><br /><br /><br />I recently went to the area Multiple Myeloma support group meeting. It is supported by our local Leukemia Lymphoma Society. The planned program was learning about a local hospital's music therapy program. While the program was interesting, the best part was networking with the three other cancer bearers. After the program, the four of us stood around comparing notes about our treatments. That was "priceless." While I don't have "relationships" with these people, I look forward to seeing them again in December. The facilitator said she sent meeting notices to 80 Multiple Myeloma clients in our two county area. I was surprised at the large number. What a wealth of support and information! It's too bad the group meets only monthly.<br /><br /><br /><br />I participate in another group that doesn't even know it's a support group. I always looked forward to the time I could participate regularly. Too bad I had to have cancer in order to be active with this group! This is our church quilting group. These ladies greet each other with open arms. They have listening ears and lots of experience and advice. I'm not just talking about quilting experience (there is lots of that), but they have life experience, and even some cancer experience. I can choose to talk or just work silently. This group of about 20 ladies carefully make many quilts that are auctioned off to benefit MCC, our Mennonite relief agency, which helps people in need around the world. Visiting and working with these ladies is a high point of my week.<br /><br />Support is found in many forms. I get support from my family, friends, church, and work. If we are able to find a support group to be with, that is good too. All are part of the healing community. I thank you!Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com1tag:blogger.com,1999:blog-7522271029807875733.post-44174044562342574752009-11-11T14:48:00.000-08:002009-11-11T15:36:49.171-08:00UneventfulLast Friday, Valerie was my chauffeur for a trip to the LA area to visit my dad and his wife. We stayed with Aunt Audrie in Hermosa Beach. Val and I agreed that staying at Aunt Audrie's house is like coming home. We enjoyed visiting with my dad on Saturday and Sunday. He is in an extended care facility after a car shattered his leg when he was hit walkig in the crosswalk. He was glad to see us, and especially glad that I brought him snickerdoodle cookies! We visited with other family members, shopped briefly, and went to church with Aunt Audrie to see her play in the bell choir. We came home Sunday night after a great weekend!<br /><br />On Monday I had a doctor appointment. Some of my blood counts and iron were a little low, but Dr. Garley still isn't concerned about that. So, despite the lady who fainted while my blood was being drawn, and the person who was sick and hiding in the bathroom, and that it took 3 hours to get done, it was an uneventful visit. We like uneventful doctor visits.<br /><br />Yesterday, Tuesday, I slept in until 9:30. I find that I need about 10 hours of sleep. I don't take naps during the day, though. I had time to read the paper and do the crossword puzzle before getting ready for lunch. Lunch was a social affair with three quilting friends. Getting together with friends is so theraputic. Tuesday evening was the Assurance (chronic illness)Support Group at church. This group started in September while I was in the hospital. As soon as I was able, I started attending. I do find this group to be very encouraging and supportive. It's good to get this boost every Tuesday.<br /><br />Today was quilting at church. I didn't get far into the room before I was snagged to help tie a comforter. Alvena showed me a nifty, fast way to tie a square knot. So, even though I didn't do traditional quilting, I learned something new. <br /><br />I like to get out of the house each day, even if I'm just running errands. I'm saving the car wash for tomorrow. Hmmm. It's supposed to rain tomorrow - maybe not such a good idea - we'll see. I try to walk every day with a friend. My neuropathy still gives me fits (figuratively). On Monday I fell at a friend's house. I fell flat on my face onto a carpeted surface. I made a big BOOM that shook the house. My glasses scraped my nose slightly (no blood). But that and my ego were all that was injured. <br /><br />Every day people share with George or me that they are praying for us. I so appreciate that. I know that God is faithful and that he has the perfect plan for me. Thank you for being part of that plan.Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com4tag:blogger.com,1999:blog-7522271029807875733.post-46777145276275273632009-11-02T15:46:00.000-08:002009-11-02T17:05:24.161-08:00San FranciscoLast Friday I had an appointment with Dr. Wolf at UCSF in San Francisco. Because the Bay Bridge was out of commission, we went farther north and took the Richmond Bridge on Thursday night. The meeting with Dr. Wolf was very encouraging. He assured me that the neuropathy would go away within a year. He recommended I take L-Carnitine and Alpha Lipoic Acid to help the neuropathy. He also noted that my immunoglobulin-G is low. That is the blood cell that fights off illnesses. I will have IV-IG given to me at least monthly here in Fresno. That should give me some resistance to colds and such until my own defenses can take over. In all, everything was good news.<br /><br />On Sunday I went to church again. It is so good to worship God with my church family. I am so thankful that I feel better. I pray that I stay healthy as I continue to grow stronger.Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com4tag:blogger.com,1999:blog-7522271029807875733.post-13611961780272432552009-10-28T21:24:00.000-07:002009-10-28T21:45:47.719-07:00Busy WednesdayWhose idea was it to schedule an 8:00 am doctor appointment? It was hard to get going this morning! I apologize to all you responsible, early people. I'm out of practice with being early. Doctor Garley says my blood test numbers are a little low, but not anything to worry about. I'm doing fine and producing all my own cells. She says I need to worry about germs for another couple of months. I have another doctor appointment Friday in San Francisco. I'll know more about my health status after I see Doctor Wolf.<br /><br />Since I got such an early start this morning, and I was feeling pretty good, I went to quilting at church. I stitched one 15 inch line. My stitches looked ok, especially since I have numb fingertips due to neuropathy. I didn't want to over-do, and I figure I can do two lines next week. I drove back home and helped Jessie carve pumpkins. We have three pumpkins and put a different quilt square on each one.<br /><br />Now that I'm done with that awful cold I'm feeling better. Neuropathy is still giving me grief. I increased the medication yesterday, so today I have less pain, but more numbness. I pray that I have temporary neuropathy and that it will go away in the next two months. Thank you, friends, for keeping me in your prayers. I know they're heard.Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com1tag:blogger.com,1999:blog-7522271029807875733.post-7621704665291400662009-10-27T14:59:00.000-07:002009-10-27T15:31:16.590-07:00Somehow I managed to catch a cold a few weeks ago. It was the knock you off your feet and put you in bed kind of cold. Fortunately, it wasn't Swine Flu, but it had many unpleasant symptoms. I couldn't bear the look of food, much less eat it. This cold lasted two weeks. Now I'm feeling better. I've also become rather germ-phobic. I don't want to go through that again!<br /><br />I went to church on Sunday. It was sure good to see some of the people who have been supporting me through prayer, food, quilts, and cards. I enjoyed singing and realized my singing muscles are a little out of shape! I tried to not shake hands to avoid germs, but it was hard to break the habit. Everyone was very understanding. I hope to stay healthy so I can attend next week.Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com1tag:blogger.com,1999:blog-7522271029807875733.post-79215925432346747402009-10-18T23:49:00.000-07:002009-10-19T00:08:57.089-07:00Dye n a ColdLast week we dyed moms peach <span class="blsp-spelling-error" id="SPELLING_ERROR_0">fuz</span>.<br />Before:<img id="BLOGGER_PHOTO_ID_5394199788838289618" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDaJ4jhMhVZmPY2CImUDKVaaSRb2dG5wHckCaYDZ9Cj5etqcqlbxwBUYiolXTr0TcguAsPPnMoexaA4j1IOQPNtxWXeAtHctxVgZT0KfYxGHYU4DrzBi25fWdDiq7wdo1ln4Sfi0hURiI4/s400/Slippers+005.jpg" border="0" />After:<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn2gvIgMSbXaV0cgC7ipli1tUZChngk0pKporS4ZeST-g5OOUOF3CQPaGyhxIUm6_tW6xP0q7dSXTj_fvtO3dtcSvZ6Ck1L0rE-UU9zoLzXWbp9yX6D4FO6X_XCrrbL7Z5t1HTCnqsz5ZB/s1600-h/Slippers+006.jpg"><img id="BLOGGER_PHOTO_ID_5394199793480972642" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn2gvIgMSbXaV0cgC7ipli1tUZChngk0pKporS4ZeST-g5OOUOF3CQPaGyhxIUm6_tW6xP0q7dSXTj_fvtO3dtcSvZ6Ck1L0rE-UU9zoLzXWbp9yX6D4FO6X_XCrrbL7Z5t1HTCnqsz5ZB/s400/Slippers+006.jpg" border="0" /></a> Not a HUGE difference but now the really light hairs cant all hide. We might try again now that I know the dye won't stain her scalp a funny color!<br /><br />Mom got a cold last weekend and hasn't had much fun with it. At least she knows she's not the only one in the valley with her symptoms because <span class="blsp-spelling-error" id="SPELLING_ERROR_1">SaveMart</span> was all out of the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">recommended</span> over the counter stuff. While misery loves company, this sort of company <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">wasn't</span> so much appreciated because she wanted those <span class="blsp-spelling-error" id="SPELLING_ERROR_4">meds</span>. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Meh</span>. We found some a little later.<br /><br />One perk to this cold has been that previously if asked how she was doing she would NEVER say better. She couldn't see how she was improving daily the way that all her friends and family could. NOW she realises that she was in fact doing better.<br /><br />Her blood counts seem to have met the approval of her doctor. Her hair is slowly getting longer. She is down to one <span class="blsp-spelling-error" id="SPELLING_ERROR_6">ativan</span> a day. The nausea is still lingering. The doctor says that at this point it is no longer a direct result of the chemo but more her body clinging to the nausea. She had nausea for the full 9 months of both of her pregnancies and then from chemo. Her body/brain is sort of holding onto the memory/action/experience. The doctor wasn't too concerned, but this <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">isn't</span> something mom really enjoys lingering.<br /><br />The other thing that sort of has her down in the dumps is her <span class="blsp-spelling-error" id="SPELLING_ERROR_8">neuropathy</span>. (Her nerves are telling her brain her feet are numb and cold, her brain also <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">receives</span> pain signals.) This hasn't gone away since her FIRST chemo treatment and the doctor says there is a chance it might not go away. Mom has decided that <span class="blsp-spelling-error" id="SPELLING_ERROR_10">neuropathy</span> staying just wont do so she is bumping up the exercise in hopes of kicking it to the curb. (<span class="blsp-spelling-error" id="SPELLING_ERROR_11">There's</span> a chance it might have to do with circulation) <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Pre</span>-cold she walked fairly regularly (4 days.) Things were looking up then the cold sort of slowed her down. I think now that she has gotten <span class="blsp-spelling-error" id="SPELLING_ERROR_13">meds</span> from the doctor and the cold has seemed to wan she'll be up to walking again. Give her a call if you have time to be a walking buddy for even 20 min. She really values the time to talk with friends, and at the moment she needs all the circulation improvement/endorphins she can get!JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com4tag:blogger.com,1999:blog-7522271029807875733.post-91530813831683391162009-10-12T19:18:00.000-07:002009-10-12T19:32:56.453-07:00A Cup of TeaNormally I drink a cup of tea every morning before I head off to work. Since the Stem Cell Transplant, that has not been my desire. I've tried different flavors with little interest. Today I tried Earl Grey and it was good! I had two mugs full. What do you know. These things happen at different times. I measure progress by day and weekend. I still have some nausea and <span class="blsp-spelling-error" id="SPELLING_ERROR_0">neuropathy</span> is in full force. If anyone knows how to get rid of the vile side effect, I would be most <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">grateful</span>. Currently I am taking B <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">vitamins</span> and walking daily.<br /><br />I visit the local doctor weekly. I go to our church's cancer support group every Tuesday. I'm looking for walking partners.<br /><br />Thank you to those of you who read George's Blog. It is a good way to keep up to date. I'm not a great writer, so I'm counting on him.<br /><br />Thanks so much to all my prayer partners.Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com8tag:blogger.com,1999:blog-7522271029807875733.post-18165224696964679132009-09-21T10:16:00.000-07:002009-09-21T10:29:10.410-07:00Going to Watch A MovieToday mom is mostly a two year old. However she’s still my mom. One of the hardest parts of this Multiple Myeloma journey is maintaining a mother daughter relationship (and even a father daughter relationship) when the daughter becomes a caretaker. Mom wanted a shower today. Well, first she kept telling me she was going to watch a movie as she was waking away from the room with the DVD player. Once we established that she was in fact going to take a shower, she didn’t want my help doing anything. I just stood within rescue reach as she unsteadily climbed into the shower. She made a couple exclamations when the water was colder than she had anticipated, or she couldn’t quite transfer the water from the bath spout to the shower head. I asked if she wanted help, but she boldly declared that, no, she didn’t want any help. I got her clothes out and ready. The water stopped. She had her own towel and didn’t want help getting it. As she stood there, cold, wet, contemplating stepping over the tub ledge with her unsteady limbs she finally let me help. We got her dressed and into bed and everyone was more comfortable. She is contentedly listening to an audio book in bed now. She has her moon boot down slippers on to keep her feet warm. The neuropathy is still causing weird sensations in her legs and feet. Her meds are leaving her pretty dazed and confused.<br /><br />Ps. Mom's phone got doused in grape juice somewhere between when she left for the mountains at 1 on Friday, and Sunday. Should you wish to get ahold of her today you can call her on my phone.JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com3tag:blogger.com,1999:blog-7522271029807875733.post-82168993105745079002009-09-06T10:49:00.000-07:002009-09-16T19:55:52.991-07:00ForwardFor updates on Sue's condition, please visit George's blog.<br /><br /><a href="http://www.themywifehascancerblog.blogspot.com/">http://www.themywifehascancerblog.blogspot.com/</a><br /><br />Sue will resume blogging when her energy picks up a bit.by George!http://www.blogger.com/profile/17235075120099550324noreply@blogger.com2tag:blogger.com,1999:blog-7522271029807875733.post-12529469425093556612009-09-02T10:43:00.000-07:002009-09-02T11:09:09.026-07:00Good News, Bad NewsNot about my condition! Good: moved to a private room-more space, more quiet. Bad: My cell phone doesn't get a good signal. So call my room number: 415-514-5320. Feel free to call - It makes my moment!<br />I've done the significant part of my job here. I had the super chemo, then a day of rest, then my harvested stem cells were defrosted and put into me. Now I have about two weeks to get over my nausea and gain some immunity. Hopefully I'll be germ free and, not have many side effects. My blood clot seems to be taking care of itself. The swelling is gone.<br />For more colorful information, I hope you're checking out George's blog. Thanks to anonymous who wrote the great poem as a comment to the last post. I like it, expecially the personalization. I wish I knew who you are!Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com2tag:blogger.com,1999:blog-7522271029807875733.post-8170797504827262712009-08-29T10:01:00.000-07:002009-08-29T10:10:14.024-07:00And they're off...We leave today for San Francisco. I'll be admitted to the 11th floor of the medical center on Sunday. The super chemo treatment will probably happen on Monday. That treatment will be about 17 minutes of whammo!<br />I would like to maintain contact with you. You are welcome to call my cell phone, but the hospital asks that we not have long conversations on cell phones. I'll get my bedside phone number when I am admitted. My address is: Susan Harper, Patient; 11Long; 505 Parnassus Ave.; San Francisco, CA 94513.<br />I feel like I'm packing to head off to college or some other great adventure. On the other hand, I know it's not all going to be light hearted fun, so I do have some apprehensions and dread. I know I am in good hands.Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com7tag:blogger.com,1999:blog-7522271029807875733.post-46340782597944724482009-08-29T09:06:00.000-07:002009-08-29T09:59:34.885-07:00Strength in Numbers<div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEz3ImFt4vt7j2zVMoEc5ZU3xJOpSoEaJcH0qAEIZ0XiN3Ul29GLV_PPqRTQD8qe8Sh81wGsrb3jqXy6DCoSYoJRgDtP0LEIp-Cq_NmpcuGK_en3xGwHp9x4KxtLu01OLtPU_7zYbD02Qq/s1600-h/September+029.jpg"><img id="BLOGGER_PHOTO_ID_5375427911935104418" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEz3ImFt4vt7j2zVMoEc5ZU3xJOpSoEaJcH0qAEIZ0XiN3Ul29GLV_PPqRTQD8qe8Sh81wGsrb3jqXy6DCoSYoJRgDtP0LEIp-Cq_NmpcuGK_en3xGwHp9x4KxtLu01OLtPU_7zYbD02Qq/s320/September+029.jpg" border="0" /></a><br /><div>On Thursday, my Bass Lake quilting friends (all but Ruth who is in San Diego), brought breakfast over. A nice bon voyage breakfast. I was encouraged to open a large gift bag and pulled out a beautiful blue and white quilt! 21 of my friends had been working on this quilt over the summer. I did hear whispering of "sewing kits" going around but had no idea it was about a beautiful quilt for me! It will look beautiful on my bed at UCSF. As Dotty said, "the love of God and my friends will wrap me in warmth like a quilt."<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJQH7Q6ZGll9g3bNh6sxcowDJyC3UVU7fziNS96lWPSVOH0LUY139zpP3U6ag8_oqMQYpBWh25Zl5iQ4M0BxwUGd0L1JNicQHeD_sM0DhH1lYyOTsISd5-QkMgZ4sy3udP_Dlms0ZjPSxp/s1600-h/September+038.jpg"><img id="BLOGGER_PHOTO_ID_5375429971372556658" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJQH7Q6ZGll9g3bNh6sxcowDJyC3UVU7fziNS96lWPSVOH0LUY139zpP3U6ag8_oqMQYpBWh25Zl5iQ4M0BxwUGd0L1JNicQHeD_sM0DhH1lYyOTsISd5-QkMgZ4sy3udP_Dlms0ZjPSxp/s320/September+038.jpg" border="0" /></a><br />Friday, the postman brought a box to my door. It had my cousin's, (minister Bruce) address on the return. Inside was a lovely hand knit shawl. The shawl was dedicated during the worship service at the Lakeville (Mass) United Church of Christ. The hang tag read, "may it enfold you in our love and prayers." I can imagine times when sitting up in bed that I will want something across my shoulders. I will think of the kind people in Massachusetts who prayed over the shawl continue to pray for me.<br /><br />Another group project that has been very encouraging is my Aunt Betty's church, Rockland Community Church, in Golden, Colorado. Every week I receive a couple of cards from their card sending ministry. I love getting kind words through the mail. This group's dedication is impressive. I'm glad to know they're praying for me.</div><br /><div>Thank you to everyone who thinks of me. I am amazed when I run into people who say they have been praying for me every day. I have never before experienced this kind of attention. I know that God has lessons about prayer and dedication here for me.</div></div></div>Susanhttp://www.blogger.com/profile/04032121136417813998noreply@blogger.com2tag:blogger.com,1999:blog-7522271029807875733.post-71828354613972418062009-08-26T20:27:00.000-07:002009-08-26T20:42:38.206-07:00Through Thick and ThinAs written/transcribed by Jessica, any misplaced or lack of commas are that of the typist:<br />No change in the blood clot. I <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">received</span> a 7 day supply of blood thinning shots which makes tomorrow the halfway point. I'm hoping for some change or progress by then.<br />I've had time to finish a <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">Pulitzer</span> award winning book, borrowed from Maggie, called <a href="http://www.amazon.com/Middlesex-Novel-Jeffrey-Eugenides/dp/0312422156"><span id="SPELLING_ERROR_2" class="blsp-spelling-error">Middlesex</span> </a>by Jeffrey <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Eugenides</span>. Out of five, I give the book a 4, because you had to invest a lot of time into it. In <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">other words</span>, not a light read.<br />I'm also taking some more time to enjoy the devotional <a href="http://www.amazon.com/Praying-Through-Cancer-90-Day-Devotional/dp/0849900212/ref=sr_1_1?ie=UTF8&s=books&qid=1251344194&sr=1-1">Praying Through Cancer</a>. The two page devotions are a nice break from the heavy read.<br />Our current prayer requests are for the clot to go away safely and that we can register at UCSF on Sunday as scheduled.JHNickodemushttp://www.blogger.com/profile/08916475357045438385noreply@blogger.com0