WOW!

What a day! Had my scan this morning and then saw my doctor this afternoon after a nice lunch with my Mom and Sis. We didn't have a report from the radiologist yet, but my Doc pulled up my image on the computer. Remember that image not too many months ago was filled with black areas, but today we could not see a single black area on the screen representing cancer. We will see what the radiologist says, but it appears to be a clean scan. I had a feeling it was going to be good but Wow! We had a nice celebratory dinner at Casa Romos. We had our first family dinner out that included my three little grandsons and they were the highlight of the evening! What a journey I am on and the relief and joy is saturating me today. There are no words to fully express how thankful I am and how blessed I feel right now. I am feeling better and stronger every day and now with the clean scan I am even more motivated to get my life back better than ever! I do not want to waste a single day being sick, stressed or anxious, but continue to make the most of each and every day. I am just so very thankful. God is awesome. Happy Thanksgiving everyone!!

LIVING WITH LYMPHOMA

My doctor gave me a dose of reality at my October 30th checkup. I have spent the last week and a half digesting and coming to terms with what he explained to me. Basically I may never have that "perfect scan" I have been praying for, but what they are trying to do is manage my lymphoma. There is no cure as of yet for non-hodgkins lymphoma, but I may be able to live well with it if we keep it under control and we are able to manage it well. It doesn't change what I am doing, I still see my natural doctor to try and manage the side affects of the chemo drug. I see my nutritionist and am on a wellness plan. I take specific supplements that will not interact with the chemo drug but will support my immune system and help me with side affects from the drugs. I eat a strict diet and have eliminated all gluten, dairy and sugar which has helped my stomach tremendously, and I buy as much organic produce and clean meats as I can. I am trying to get as much nutrition as possible out of every bite I take. My liver is already struggling to keep up with clearing out the toxins from the chemo drug so I am trying to do whatever I can to baby my liver and I am trying to detoxify as much as I can. I haven't been able as of yet to add too much regular exercise to my wellness plan, but I do try to get out and about a little more and I am going to add a regular exercise program hopefully soon. Trying to work two part days wasn't working out very well and my doctor decided to back me off of work for a awhile longer until I get a little bit stronger. I am going to try to work again, probably after the first of the year. I am very thankful for my family and friends and all the love, support and prayers. I could not get up every day if I didn't have so many awesome people in my life who have been patient with me and helped me so much. God Bless. Love you all. Vicki

PUMPKIN PATCH

Had a wonderful morning at the pumpkin patch with the triplets yesterday. I can't ever get enough of those babies...they are the cutest things ever. I am feeling so blessed I was able to enjoy their first pumpkin patch trip with them. Every moment with them is so precious to me. Despite my illness or how I was feeling I have had the best year ever because of them. When I am with them I don't even think about being sick or how I am feeling. My doctor is great...but the babies are what really heal me. Looking forward to the holidays with them and all the family. I worked a couple of part-time days last week. I was pretty worn out on Thursday after working 2 days but it was a good start and I am back at it tomorrow. Wasn't sure I would ever work again so it is a really good feeling. It is still a little weird and kind of scary but I am so happy to be back. I finished cycle 5 yesterday so have this week off of chemo. I will do my blood work Thursday and see my oncologist on Friday and spend the week getting stronger and prepared to start cycle 6 next Monday. After cycle 6 as I understand it I will have a new scan and at some point a bone marrow test to see if the cancer has cleared out of my bone marrow. The fight continues. I will win. I have gotten lots of messages about prayers. Thank you for all of the prayers. The power of prayer is awesome.

NUTRITIONIST

After I had my 4th scan at the end of September I started feeling bad. That was the week I was off my chemo for 7 days and that was the week of my good doctor visit and good report so I was confused why I was feeling so bad. Every day I became increasingly weak, lethargic, and became more and more down and out. I had to quit doing yoga because I just didn't have the strength. I quit walking or doing anything. I mostly rested. And I started feeling nauseated and had headaches. I finally went and saw my natural doctor. I thought maybe I had caught a virus or infection but he confirmed that I had not, but maybe had caught a little chill from the change of weather. I met a wonderful lady at my natural doctor's office and she referred me to a nutritionist who she said had helped her a lot. I decided it was worth a try since I couldn't handle feeling the way I did. I knew there was no way I would be able to work even the 2 days a week I had decided I wanted to try later in the month. Fortunately, the nutritionist researched and understood the chemistry of the drug I am on. It is killing the cancer but it is also killing all of my good bacteria. I was lacking enzymes to break down the food in my stomach so I was basically getting very little nutrition from my food. My adrenals were weak, my thyroid sluggish and I have what is called reactive hypoglycemia. She put me on a variety of supplements and homeopathics. She also put me on a strict nutrition program. I saw her Thursday morning and started the program Thursday afternoon. I am not 100% yet, but I feel much improved even in the last 2 days. I didn't have a stomachache tonight for the first time in forever. I seem to be gaining a little energy and I seem to be thinking a little clearer. I joke about chemo brain, but the nutritionist said actually the drug will cause "chemo brain." My brain has been in a fog for months and I didn't realize just how bad it was until it cleared out a little over the last couple of days. It is amazing and scary all at the same time. Of course I need the drugs to kill the cancer but I am so thankful I found someone knowledgable and able to help me with the side affects so I can start functioning better. Just one more step in my road to recovery. I apologize to everyone for my forgetfulness, my memory loss, my disconnect at times; my "chemo brain." There are so many things I thought about doing but just never could get it done, such as thank you cards. My goal is to get back to work a couple of part-time days a week and build from there. I will have to get a bone marrow test at some point, but I am moving in a positive direction. Baby steps.

MORE GOOD NEWS

Just got back from my doctor appointment. Although I am not at the complete response I had hoped for, I am close. I am so close that my doctor is going to hold off on the infusions for now. Normally if you are not at a complete remission after cycle 4 they have you do another round of infusions. My doctor wants me to keep taking the chemo pills for now and hopefully I will be at a complete response after cycle 5 and not have to have any further infusions. We compared my scans side by side and even since August you can see dramatic improvement. There are little areas of black, but not that much especially in comparison to where I started. They didn't have exact sizes or percentages, but my sister decided 90% improvement and that seems reasonable to me although clinically we don't know if that is accurate. So Monday I start cycle 5 and we will see what happens from there. I was so excited at the good news that I didn't think to ask when I would have another scan or when I would have the new bone marrow test, but I'm just not worried about that right now. I want to be at 100% and have all of the black off my scan. That is my goal and I'm thinking another cycle along with a little exercise, good nutrition and prayer I will be at a complete response sooner than later. I am going to keep seeing my natural doctor as well. So I decided I would try to go back to work a couple days a week and see how I do. I inquired of my doctor and he said that would be okay. So in a couple of weeks I am going to start working 2 days a week and keep building from there. I am nervous and scared to death at the thought...but I can do it and I am going to ease into it. I know it will be okay once I start doing it and my body gets use to it. Downey Brand has been so encouraging and supportive. They have made it possible for me to focus on my treatment and healing and not worry about my job. My Mom and Sis were with me and we were all really happy with the way the scan looked and my Doctor I could tell was relieved and super happy. He gave me a big hug. I always watch his reaction to things and it is a great relief to me when my Doctor is so happy. Even he seemed a little emotional about it all. So now I am going to take a nap and then go see my grandbabies and give them a super big hug. They are 9 months old today and getting more and more active every day. This will be good because I need to gain some strength right about now if I plan on keeping up with them. Could I be any more blessed? I am just so happy and so relieved that I have made such great progress in the last 3 and a half months and having those little angels in my life has been a great part of my treatment. I think they are one of the reasons why I am responding so well to treatment. Thank you everyone for your continued encouragement and support. I don't know how I would have done this without my family and friends. Love you all. Vicki

Light the Night 2009

The Light the Night fundraising walk for the Leukemia and Lymphoma Society was this past Saturday night, September 26th. It was a very spiritually uplifting night for me. Cindy Buckhalter and Debbie Fong (my friends at Downey Brand) took the reigns in forming a team. Cindy designed a t-shirt "Vicki's Light" and Debbie Elder modeled her own hand for the t-shirt. "Vicki's Team" raised over $1,200. That is just awesome!! I know first hand that LLS uses that money very wisely for research and for patient assistance, both of which I have benefited from. If it were not for the continuing research funded by LLS I would not have had the treatment options I did have when I was diagnosed with recurrent non-hodgkins lymphoma this past spring. And when I went through my first treatment 9 years ago my husband and I were both sick and quickly went from a 2 income family to 2 people on disability. The patient assistance I received at that time from LLS helped me with copays and medications and allowed me to focus on getting well instead of worrying about whether I would be able to afford my treatments. Saturday was a hot evening but everyone was a trooper and we marched around the State Capitol together with red and white lighted balloons. Thanks to everyone who contributed to the fundraiser and thank you to Cindy Buckhalter, Debbie Fong, Debbie Elder, Karen Flores, Anne French, Kim Josephson, Brooke Bartley, Martha Lacey and her friend Jackie, and Bob and Mya for your fundraising efforts and for the wonderful walk around the Capitol. I love you guys!!

NEW SCAN APPOINTMENT

They just called with the date and time of my new scan which will be Tuesday evening, September 29th. That means I will have to fast all day but that's okay, it needs to be done so my doctor will have my results by my October 2nd morning appointment with him. I am so excited to be getting the scan because of the possibility I could be at a complete remission. I am also really scared because of the possibility I could still be at a partial remission or have gotten worse. I have had some recent bouts of nausea and dizzy spells so I am not venturing away from home too much by myself right now. I had to cancel my yoga on Friday. I did yoga this morning but then I fell asleep for a couple of hours as soon as Michelle left because I was so worn out. But that's okay, I still think considering everything I am doing well. This last week of the chemo pill seems grueling. I can't wait to get through this bottle and then have at least a week off. Further treatment will hinge on the results of the scan and I won't know anything until that October 2nd appointment. All and all I've had a really good month. My birthday was September 4th and I've pretty much been celebrating the whole month. I remember last spring when I got the results of my first scan and it looked so bad I wonder if I would make it to my next birthday. But here I am, still fighting and not ready to give up. My birthday kicked off the day before when some of my friends from work took me to Zokku for lunch. It was so nice to get together with them and I always love Zokku. The next day my son Christopher came for a couple of days for my birthday. He took me to lunch at Hot Italian after I picked him up from the train. Super yummy pizza! My son Scott and his wife Mattea had a family BBQ at their house on my birthday and it was wonderful. I just love it when all my family gets together. I have had many lunches and dinners since then because I have such fabulous friends but I think the birthday celebrations are over. My son Jeff is having a birthday this Thursday so it will be another get together but for him this time. I can't believe my baby is going to be 27! He is such a big help to me. He checks on me all the time and comes by every week to mow my lawn and help me with whatever I need. All my family and friends have really been here for me. My sister, Sis, is always driving me places when I need help and I can always count on her and my Mom to go with me to my appointments. One day at a time. I just want to get through this week - which I will. I am so praying this scan shows that I am in a complete remission. Please keep me in your prayers. I so believe the power of prayer has gotten me this far. Thank you.

September 3rd Doctor Appointment

I saw my oncologist, Dr. Wun, on September 3rd for a checkup and to get approval and orders for cycle 4 of my chemo drug. I had been thinking about it for awhile and decided to ask him at that appointment what he really thought my prognosis is. Dr. Wun is not only an expert in his field but has become a caring friend over the last 10 years. I trust and value his opinion. He related to me that he thinks I am making great progress and he thinks the improvement I made after 2 cycles is good. He brought up my scan from the beginning and compared it side by side with my scan from early August. Although there is still a lot of cancer throughout my body and organs, it plainly showed how my spleen has gone back to a normal size and no longer has the black spots on it. The solid black across my abdomen is definitely broken up by grey areas and improving. My neck no longer has the thick black lines down each side, but rather just a dot at the jaw line. My tumors are shrinking to varying degrees and no new cancer areas. Dr. Wun explained that these lymphomas do not melt away over night, but that he does think over time it will go away. It is his opinion that I will be well again. It was definitely a big relief to hear him say that. It gives me the renewed hope and encouragement I need. I will have a new scan on September 28th or 29th and then meet with my doctor on the morning of October 2nd to discuss the results. I am aiming for a complete remission. If I am at a partial remission I may have to have an additional 4 infusions of the Rituxin like I did in July on 4 consecutive Mondays. It will be a big day and I will know at that time what my next step in treatment will be and what my life will most likely be like in the coming months. I started doing Yoga on M-W-F mornings a few weeks ago. It is hard for me but I am determined to stay strong and ready to be well. My friend Michelle who I use to weight train with at 24 hour is a certified yoga instructor and kindly agreed to come to my house to make it as easy on me as possible. I need to take a little cat nap so I will go for now, but keep me in your prayers. I am looking forward to my scan and next doctor appointment. I will post again soon now that I have internet. I did 2 posts in 1 day! Woo Hoo! God Bless. ~Vicki

CYCLE 4

I finally have internet at home so I will be able to post more often. Sorry it has been so long. After my August doctor appointment the whirlwind of medical appointments finally slowed and I started coming to terms with my illness, my treatment and everything that has happened. I kept thinking, that poor girl. Then I would realize that girl is me and this is happening to me - again. After 9 years I was so shocked that I had relapsed. And I can't even feel sorry for myself because I am not immune - tragedies happen every day and things far worse than what I am going through. Why me? Why not me? But I feel blessed. I get so much strength from God. I get so much strength from my family and friends. I get so much strength from my precious 3 little grandsons. Have I mentioned how beautiful and funny they are? Yes, to everyone I know I am sure and to strangers. I am sure I am the most obnoxious grandmother ever but I don't care. I can't help it if I have the best little grandbabies ever! ;-) I have so much joy in my life and cancer has not been able to take my joy of life from me. I won't let it...I refuse to let it take any more than it already has. But I've had moments...and I have had days...when Iam trying to remember how strong and happy I am and the tears flow anyway. On the hottest day last week my air conditioning wouldn't work and after an expensive service call I was told it was because I didn't put the door back on after I changed the filter. I had left it off so my son could make sure the filter was in correctly before I dealt with that heavy awkward metal door. And a sprinkler head busted so water was flowing to the gutter when the sprinklers came on that morning and I kept thinking about how much water I had wasted. The disability people told me there would be a 2 to 4 week delay in my disability check and it made me feel so vulnerable and I kept thinking about the people who don't have any backup and how horrible it must be for them. And the tears flowed. I just decided to let them flow because it just takes way too much energy to hold them back. And energy is what I am most in short supply of these days. I started cycle 4 on September 7th. The week before was my week off meds and I really felt good that week. But as I take the chemo pills, as the days go on, I get more and more zapped for energy. I was juicing which helped me a lot...but then I started having days where I was too tired to deal with the juicing. I am going to try to force myself because I know I will feel better. In fact, I am going to go juice right now...and then I will post again later today about my September doctor appointment and my September birthday. Bye for now. ~Vicki

PROGRESS!!

I saw my oncologist this morning and we went over the results of the scan done a few days ago. I definitely have less volume of tumors overall and the ones they were tracking measurements on are smaller. They feel I am 57% improved after two cycles. They consider me having a partial response at this point. My doctor and the nurses actually thought this was very good progress after only 2 cycles. Theoretically if I keep improving at the same rate, then after 2 more cycles I could possibly have a complete response. The difference being that the next 2 cycles will be the chemo pill alone and not the Rituxin infusions, but they said the Rituxin is still working in me, it doesn't just stop after the infusions stop. They will do a new scan after cycle 4 and at that point if I am still having a partial response they may have me do 4 more Rituxin infusions. He showed me a comparison of the computer image I had at the end of May and the new one. You may recall that I had a lot of very black areas representing the cancerous swollena and inflamed tumors. My neck no longer has the thick black areas down the sides. The black areas in my chest, back, underarm and groin are definitely smaller. The large black area in my midsection is no longer one solid black area but now broken up by lighter areas. My spleen is smaller and not nearly as dark, but more of a light gray. One of the larger lymph nodes near my liver went from 5.7 to 1.3 which is significant. Another one they were tracking in my right upper back area and my right groin area are definitely smaller but not as dramatic of an improvement as the one near my liver. There are no new lesions or tumors. This is all really good news and my doctor is pleased. Of course, I would prefer they all be gone, but that isn't realistic at this point. So it will be a battle the next 2 months and I will keep doing everything possible to assist my body in a complete response by the end of cycle 4 which will be early October. My family is happy and my spirit is renewed for the continued battle. Thank you Team Vicki. Thank you for all of the encouragement, support, prayers and love. I visited my office yesterday and left there after so many hugs and so much love I am still walking on air. How blessed I am to have such great family and such great friends. Keep me in your prayers! Now I am off for a dose of the best medicine ever - to see my beautiful little grandsons, Austin, Brody and Caleb. They are 7 months old now and cuter than ever, always full of smiles and giggles! Just too precious!! Love you all, Vicki

FOURTH & FINAL INFUSION!

Woo Hoo! I made it through the fourth infusion and won't have to deal with the weekly trips to the Cancer Center for awhile. I also am done with my weekly lab trips to get blood work and only have to go once a month now before my monthly clinic visits with my oncologist. So I continue with cycle 2 of the Revlimid and then on August 4th I have a scan and see my doctor August 7th to check my progress and see if I go to cycle 3 of the Revlimid if he feels I am handling it well and progressing with it. I think I mentioned before that my oncologist won't determine if I need further infusions and need another treatment option until my scan at the end of cycle 3 which will be in September. So far so good I think. I have been doing pretty good. I have some pain in my pelvic, rib, abdominal and back areas but it could be a good thing. The tumors tend to act up and ache before they shrink up and go away so hopefully that is what is happening. I am just trying to pace myself, rest and heal. Next Monday I am spending the week at a house in Tahoe with friends and family that my friend Kieran so generously donated for the week so that I can rest and recuperate. I am looking forward to getting out of my house for awhile and out of this heat. I am off to visit the babies but wanted to give you all a quick update and let you know all is well. I visited with a friend today and she said if she can't even tell I've been sick or what I've been going through, that I look healthy. Nice to know I wear sick well. LOL! Thank you all again for your support and keeping me in your prayers. I am forever grateful. Love, Vicki

THIRD INFUSION

Good morning. My third infusion on Monday went very well. They got the needle in first try for the IV and the meds went in without problems. Nice to have a non-drama day. I pretty much slept through the whole thing. My blood pressure pretty much held mid to low 80's over upper 40's to low 50's the whole day. It's a little low but caused no problem. My body is pretty much use to the lows by now. Between the steroids and sleeping most of the day I could not sleep a wink Monday night so I was pretty exhausted yesterday. But my girlfriend Alaina picked me up and we went to Scott & Mattea's so I could show off my grandbabies. The babies loved the attention and giggled, smiled and played the whole time. Then they went off for a trip to BabysRUs with their mommy and other grammy. The babies are so much fun, I can never get enough of them. After Alaina and I had a nice visit and lunch I took a nap and slept good last night so today I feel better. Like a lot of people I'm sure, I am not very tolerant of the heat so I am pretty much staying indoors and resting. One more Rituxin infusion to go this cycle. I just started my second cycle of the Revlimid. When I finish this cycle they will to an interim scan before I start a third cycle of Revlimid. They told me Monday they won't make a decision regarding further infusions and treatment until I finish my third cycle of Revlimid in September and they do another scan. So far so good but I am excited to see the progress after I get the interim scan the first week of August. Thanks everyone and keep me in your thoughts and prayers. I truly appreciate all of the encouragement and support I am getting from all of you. Although I get a little lonely at times being somewhat isolated, I am happy and will keep on fighting.

DOCTOR APPOINTMENT

I had a good doctor appointment today. My doctor could barely detect the tumors from the surface that just 10 days ago he could feel and they were markedly smaller even then. He explained that everyone is really excited about the good results they are getting from the clinical trial. Some of the people who have been dealing with these blood related cancers for a very long time, even before my doctor was born, were so surprised by the results they were seeing that they called the doctor who is the head of the clinical trial and questioned him about the accuracy of the data. My doctor is excited that I seem to be responding so quickly and he thinks I have been through the worst of it as far as side effects and symptoms. My liver enzymes are back to normal but my white blood count is a little low; not low enough to concern him though. I am off all meds now except the chemo pill which I start again on Monday for a 21 day cycle. I have infusions of Rituxin the next 2 Mondays. Then they will do another CT/PET scan on 8/4 and I will see the doctor on 8/7 before I start another cycle on 8/10. He will decide at that time whether I stay on the chemo pill only or start another 4 week cycle of Rituxin infusions. I have had a pretty good week. I still get super tired but I can't really complain. I think being off of the other meds will help with my energy level. So I am just hanging out and resting and getting ready for my next infusion. I may even take a short bike ride tomorrow morning. I may not be able to every morning, but if I can get out on the bike trail even a couple of times a week it makes me feel a whole lot better. Have a great weekend everyone and I will let you know how the next infusion goes. I will probably post an update on Tuesday morning.

SECOND INFUSION

Good morning. I didn't update my blog yesterday like I thought I would be able to do. I forgot I would have only one arm available and the drugs made me so sleepy I couldn't keep my eyes open very long. The second infusion went a whole lot better. My blood pressure was a little low but held steady the whole day. The worst part was the nurses trying to get the IV line in. My veins are little tiny ones and my nurse popped two veins trying to thread the needle in. Ouch! Finally a second nurse was able to get it in. It took an hour just to get through that process but after that it was smooth sailing and I slept through most of it. I was out of there by 2:45. Because of my experience with the first infusion last Monday and then the trouble with the IV as we were trying to get started, I was pretty nervous by the time they were ready to give me the Rituxin but fortunately it all worked out well. Today I feel really good mainly due to the steroids. They give me an energy boost for a couple of days so I took advantage of that and hopped in my car to come see the babies. That is the beauty of having really horrible days - when I have days I feel good it is awesome. When my blood pressure fell to 66/33 at the beginning of the first infusion I felt so bad I just closed my eyes and left it in God's hands. But today when I was able to get in my car and drive myself to see my Grandbabies I was gloriously happy. The sky, the sunshine, the trees, everything just seems so glorious and I was just so excited and happy to be driving myself with the windows down and the music loud. And these babies are just gifts from God. They are so cute, so happy, just absolutely adorable. It is just so awesome to have a good day and I am happy. Days like today make all that I have been through in the last couple of months worth it and I appreciate every minute of feeling good. It's nice to have two hands to type with too. This week is my 7 days off my Revlimid pill so I plan on having a great week and I will see my doctor on Friday morning for another checkup. I am not sure I mentioned it, but at my checkup with him last Tuesday he was very pleased with my progress and the tumors he could feel from the surface were definitely smaller. My liver enzymes are up a little, but I get my labs done every Thursday morning so hopefully they will be back to normal this week. I refused the Tylenol they give as part of the premeds yesterday because I know that is hard on the liver especially with all the other meds I have to take. They are monitoring my blood counts carefully and they don't really want me out in public right now or around anyone who is sick. If my white blood count falls I will have a really hard time fighting an infection or virus and at that point I would be fairly isolated, no restaurant food, and no raw vegetables, etc. So hopefully my blood counts stay good and I have finish the next two infusions without any trouble. Babies are waking so I am going to close for now but I will post after my doctor appointment on Friday. Thank you again everyone for all of your prayers and support. I read my cards over and over and I am still enjoying the basket full of goodies I got from my friends at work on my last day there. Enjoy your week and all of the blessings around you! Love, Vicki

INFUSION

Good morning! I am sitting at the Cancer Center waiting for my infusion. My first one was last Monday. I am sorry I didn't update my blog last week but it took me a week to get over the experience and I don't have internet at home and didn't feel like going out. I am hoping for a better and shorter appointment today. Last Monday I ended up being here from 8:45 a.m. to 5:30 p.m. Everything started off okay, they got the I.V. hooked up, had an education session, and gave me pre-meds which consisted of some tylenol, benedryl and steroids. (I hate the steroids but they do their job and they assured me a quick short dose isn't going to do the damage that was done when I was on them for 6 months 9 years ago.) They started a very slow drip and not too far into it I suddenly felt nauseated, looked at my Mom and told her I didn't feel well. The nurse was trying to round up some nausea med from the pharmacy and when she got back I told her I wasn't doing well. Then she noticed my blood pressure had dropped to 66 over 33. That is when the fun began. The nurses were moving fast, stopped my meds, put my chair down flat, started flushing me with fluids, and got on the phone to my doctor. They were ready to 911 me to the hospital but my blood pressure slowly started upwards so they waited. My doctor explained to me that my body was rejecting the Rituxin but he felt that if we stopped for awhile, let my blood pressure get back to normal, then my body would recognize and accept the drug since it had already been introduced earlier. Eventually we nervously restarted the Rituxin and the second go at it went much better. The nurse is calling me in now but since I have my laptop with me I will try to post an update later today. Bye for now.

UCD ER VISIT

Sorry it has been so long since I posted, but I had a little set back over the weekend as many of you know. Apparently when you start taking the Revlimid and the cancer cells start dying sometimes the tumors in the lymph system will become inflamed, swollen and sore. By last Friday afternoon I started having a lot of pain particularly under my right shoulder blade. And a lymph node along my right jaw line swelled up causing more pain. I called the clinical trial nurse and she said to stay comfortable, use a heating pad, rest, etc. Getting a blood clot is one of the worries but my doctor felt I was low risk for that and the nurse said it could also be indigestion causing the pain under my shoulder blade. By Saturday night I was in extreme pain and had taken 800 mg Motrin with zero relief. As I sat on my sofa I realized I was in tears which is not like me so I called my sister Sis to see if she thought I should have UCD get in touch with the on-call oncologist. She thought I should and came right over to wait with me for the call back. The doctor called back and at this point she thought the symptoms should be taken seriously and advised me to head to the ER to make sure I didn't have a blood clot. They did an EKG, CT Scan and chest x-rays. Then the ER doctor and nurse explained I needed to get my pain under control and then I could go home. My tests were all good except the radiologist thought they detected some pneumonia in my lungs. The nurse wanted to give me Morphin. I explained that I had that for one of my procedures 9 years ago it didn't really do anything other than make me nauseated and asked if they had some other drug for pain relief. She insisted they didn't and I finally gave in and let her give me the Morphin which she did through my IV. After some period of time when she came back to check my pain level (which was unchanged of course since like I had said for some reason Morphin doesn't work for me) the nurse decided what I really needed was just MORE Morphin. That is when the fun began. She basically OD'd me on Morphin. My blood pressure dropped to 60 something over 30 something at which point the nurse of course started to panic. So rather than being sent home in the wee hours on Sunday I spent the rest of the day in the ER with them flushing sodium chloride bag after bag through my IV trying to get my blood pressure to rise. They also started bags of antibiotics for the suspected pneumonia. Then since I was in bed so long they started giving me Heparin shots every 8 hours (never knew a shot could hurt so bad). I had to be admitted and finally got into a room and a comfortable bed at 8:30 p.m. Sunday night. Monday they tried another narcotic in pill form for pain relief and again my blood pressure started dropping but not as bad. The oncologists came in Monday and said they really wanted to just get me out of the hospital before I got any sicker. They said if I had any more problems I could just call and they would direct re-admit me so I wouldn't have to go to the ER again. So I finally got to go home Monday evening. What a way to spend the weekend! They stopped my Revlimid for a few days and started me on a 5 day dose of prednisone to try and calm the swollen and inflamed tumors. My family cancelled the planned Father's Day get together and I missed my son Scott's first Father's Day but boy was it good to get out of the hospital alive! My sister took me to see the babies Tuesday morning. I couldn't believe how much I missed them and when I held Brody in the rocking chair he just looked at me like, "Grandma where have you been!" It just made me cry and it felt so good just to see and hold the babies. The doctors just do not have any medicine to match that. I struggled all week with symptoms but finally started feeling better Thursday. I gained 12 pounds in 24 hours at the hospital but lost 5 of it by Thursday morning and 5 more pounds by Friday morning. I felt like a waddling full-term pregnant woman all week. Of course my family and friends have been right there with me and every single day I get cards to lift my spirits and encourage me, flowers, gift certificates for food so I don't have to cook, friends bringing me dinner and hanging out, groceries, Sis and my Mom driving me where I need to go, my sister Kim came and cleaned for me, lots of phone calls checking on me, even a card with a spa certificate! I am so blessed with such wonderful people in my life and it really touches my heart and gives me strength to pull from and continue this battle. My oncologist called yesterday and he thinks the worst is over. I pray he is right. They started me back on the Revlimid Wednesday evening at a lower dose. I did my blood work yesterday and am getting ready for my weekly Rituxin infusions which start Monday for 4 cycles. So I am just resting up as much as I can and trying to get some strength back. My pain has subsided for the most part although I still have a nice big swollen lymph node tumor right along my right jaw line. Thank you everyone for everything and for all of the prayers. The power of prayer keeps getting me through this battle. God is awesome.

Happy Wednesday

Doing as well as can be expected on the meds so far. The pharmacist said I had a 50/50 chance of needing nausea meds but so far so good. Only slightly nauseated, just feel sort of flu like. It could be a lot worse so I'm thankful. I don't feel like running any races or anything but think I am doing pretty good under the circumstances. I made the mistake of trying to go to the grocery store before dinner. I won't do that again! But as long as I keep veggies and crackers handy I get through the day okay. Still hanging with the babies but I have reinforcements with me. It was fun watching Shannon and Kayleigh play with the babes yesterday and Kayleigh got us all lunch. This morning Aunt Nicole (son Jeff's fiancee) is having some fun with Caleb while his brothers sleep and she brought me hot tea. My sister Kim will be here a little later and will have lunch duty. I am as usual so blessed with company of family and friends. I think these babies are the best medicine so I am thankful I can still hang out with them! Once I get home early afternoon I settle in, then eat dinner, take my meds and crash out for the night by 8. I'm sure once my body gets use to the meds it will get better. Right now it doesn't like them very much. Culture shock since I don't usually even take aspirin. So just getting lots and lots of rest and taking one day at a time. Thank you for keeping me in your prayers. Love, Vicki

Ready for Battle

Happy Monday! I started the allopurinal and baby aspirin yesterday. I took the allo with my breakfast. When they say may cause drowsiness they weren't kidding. It was all I could do to get up from the sofa. So I have a new strategy today. I am going to take it with dinner that way I can just settle in for the evening. I am going to take my chemo pill at 8:00 every night and that way I can just hopefully sleep off any side effects from both meds and hopefully by morning be feeling okay. Mattea's last day of school is the 26th which works out perfect because my first infusion is June 29th. I have help all week with the babies just in case and Scott has been taking Fridays off. These babies are SO good they make being a Grandma easy. I have to say I am enjoying every minute of it. They are just the cutest babies ever and so super sweet. I love the weekends but I love Mondays even more when I get to see the babies. My sister-in-law, Tana, said they are going to stop every night at 8:00 when I am taking the chemo pill and say a prayer. That was so nice and I think that is a great idea. If you read this and you have a moment, pray for me at 8:00 p.m. when I take my chemo pill. The power of prayer is awesome and I am praying that these meds do their job with little or no side effects and help my body do its job getting rid of the cancer. Thanks everyone and I will let
you know how I do with the drugs in a day or two. Love, Vicki

Treatment

They have the second CT/PET Scan result now so treatment can begin! They had expected it to take at least a week so had me scheduled to start on Monday June 22nd. But the results came back in one day so they quickly got me re-registered to start treatment this Monday. For the most part the current scan was much the same as the scan on May 1st. So it didn't get better but the good news is it didn't get any worse! You are probably thinking how much worse could it get anyway, but it can always get worse, believe me. In fact yesterday they gave me quite a scare: the clinical trial nurse told me she was just going to be upfront with me and let me know I had cancer in my bones. She said that this wasn't new on this scan, but she noticed was also on the previous scan. I was thinking how this was a big piece of information I would have expected my doctor to share with me long ago. She said she had put a call into my doctor to see if he wanted a bone scan. I was stunned and mentioned my neighbor just died of bone cancer and this didn't sound very good. I told her Dr. Wun had never really given me a "prognosis" to which she replied I might want to ask him for one for "planning purposes." Okay, that was about as much as I could take in one phone call. Thankfully I was busy with the babies and couldn't fall apart, but I finally managed to get a phone call to my doctor's nurse and told her about the conversation to which she quickly told me that I did not have "bone cancer" but that my bone marrow and my bones have lymphoma involvement which is not unexpected but that it is different than "bone cancer." It is just like my liver, spleen, lungs, etc. have lymphoma involvement but it's not "liver" cancer. They are hopeful it will be knocked out of my bones and bone marrow and the tumors will go away with the treatment. She also thought the nurse meant "planning" purposes to mean treatment planning purposes not planning for my pending death. She told me absolutely not to worry about anything, that everything is going along as planned and nothing that has been diagnosed is rare for this type of lymphoma, that it is typical. Not that this type of cancer is good, but we are dealing with one cancer and the treatment will be as planned but of course moved up the week. So tomorrow I will get more blood work, visit the Cancer Center to get my arsenal of drugs, stock up on baby aspirin which will hopefully keep my blood thin and ward off blood clots which is one side effect. I take the chemo pill for 2 weeks, along with the baby aspirin and another medication to alleviate the potential for tumor "shock" which some people have been getting because their tumors were melting away so fast. I will have my first infusion 2 weeks later which will be an all day process at the Cancer Center. I am getting lots of rest, playing with the babies, and getting ready for the battle to continue on Monday. You already know who is going to win! Thanks again for the comments, prayers, cards, etc. I feel so blessed to have such loving family and friends. You guys are the best and it is so nice to have you all on my team. Love you all lots. Vicki

Bone Marrow Biopsy Result

I finally called yesterday to see if my result was in. My clinical trial nurse, Chris, is super nice and always easy to reach. They don't have the final report with all the ugly details, but they did have enough to tell me that yes, there is cancer in my bone marrow. It's not that I was surprised, but I was very disappointed. I am always hoping and praying for that unexpected result, the one that indicates there is no involvement of my bone marrow and I'm getting better. I am always hoping to wow the doctors. And, I will...just not yet I guess. I remember the first go around nine years ago, and things just seem to get worse and worse and worse...before it gets better. Just when you think things can't get any worse, they usually do. But just as I was feeling the disappointment and my spirits starting to slump...I picked up Austin who was just waking from his nap. He gave me a big smile and snuggled into my shoulder...no things aren't worse, everything really is perfect. Babies just make everything in the world right - even cancer. Later in the day I got out my UCD folder and was looking at copies of test results from my May 1st, scan and that was exactly the wrong thing. It was bad enough to see the actual scan picture of my body on the computer, but reading the result in black and white - it just couldn't sound any worse...a lot of technical stuff and medical terminology I didn't undersand, but I do understand liver, spleen, sacrum, lungs, femur, just to name a few. Good lord, my lungs! My doctor didn't mention my lungs. Is there some part of my body NOT lymphoma involved! I guess they weren't kidding when they said all over my body. Then my oncologist called to see how I was doing after 3 days on the first clinical trial drug. I had to remind him I hadn't started it yet. The clinical trial requires another CT/PET scan, which is scheduled for Tuesday, before I can start the drugs. So I have less than a week to wow the doctors, but I'm working on it, trying to heal through alternative more natural means, and through rest, nutrition, exercise, music, laughter, and of course these very therapeutic little babies. I am so happy when I am with them, nurturing them, taking care of them. They are so amazing which I think can be attributed to their amazing mommy and daddy. I am hoping and praying for an improved scan. All things are possible and I think it will be better. Maybe that will be the time for me and God to wow the doctors. Thank you everyone for all of your kind words, thoughts and prayers. I have all of the cards on my mantel and read them over and over. And the baskets of goodies that the girls from work gave me...it warms my heart and heals my spirit everytime I think about my awesome friends. Keep me in your prayers. Love you, Vicki

Bone Marrow Biopsy

With the help of my entourage, I got through the bone marrow biopsy on Friday. Having whined enough on the phone to get their attention, although they still would not put me under, they did give me some pretty cool drugs and this time I remember it all sort of but don't really care as much. They limited it to one person with me in the room so my son Scott was with me. I guess people tend to pass out when they watch the biopsy and the doctor really needed to keep his focus on me so the rest of the entourage waited patiently in the waiting room. Scott was a trouper and although it felt like I was squeezing his arm off he hung in there. We just talked about the babies and Scott and the Doc kept reminding me to breath through the pain and then it was over. I think I did a lot better this time...but I think the drugs helped a lot more. After some blood work at the lab (I barely remember that part though I do sort of remember being in the wheel chair) they took me home and planted me on my sofa where I slept the majority of the day. By this morning I am just slightly groggy and have some soreness at the biopsy site, but for the most part I think I am doing really well. Much thanks to my entourage for getting me there and home and feeding me throughout the day and thank you son for helping me get through the biopsy. I love you all.

Last Day of Work

I made it through my last day of work and would have to say it went amazingly well because of the love, care and support from all my friends and co-workers. Thank you again to all of you for the kind words, hugs, encouragement, the lunch which really warmed my heart, the flowers, books, and the two big baskets of goodies from everyone! That blew me away. There was so much cool stuff in those baskets, I just love it! I wore the t-shirt of the babies to my bone marrow biopsy and it attracted quite a lot of attention at the Cancer Center. Thanks again everyone for everything. I will miss everyone tremendously, but will try to visit when I can and my house is always open for visitors. I am going to relax and heal, and get through my treatments, but I will be back before you know it! Love you all and thank you so much. God Bless.

Treatment Decision

I have decided to participate in a trial at UC Davis for patients with relapsed/refractory Follicular Non-Hodgkin's Lymphoma (NHL). They have scheduled me for a mandatory bone marrow biopsy this Friday 5/29 which changes my last day of work to this Thursday. I will have to undergo some preliminary tests and an exam before I begin the study. I will also need to have another CT Pet Scan, ECG, blood, urine, bone scan, to name a few. My favorite, of course, is the bone marrow biopsy. The doctors seem to think anyone can endure anything for 5 minutes...even having someone drill into your hip bone with a local. I think if they ever had someone drill into their hip bone they might change their tune. But I got through it before and will again. It really was the worst pain ever including child birth. They seem to think a little Demoral this time might help. I choose to believe them at this point. I will have an entourage with me so I have back up. They have seen tremendous response in some patients with this trial so I am encouraged. The beauty of it is that if I am not responding or if the side effects are too horrible, we can stop the trial, change course and decide on a different treatment. So I will be officially in doctor world starting Friday. Ready or not...here I go! Thank you everyone for your encouragement and prayers. It helps tremendously. I so love the power of prayer. And always nice to have God on my side. ;-)

Cancer BEAT DOWN!

I am still sorting through my treatment options. I will sit down with my family in the next few days and I will have to make a decision soon. Someone from a clinical trial will be calling me to give me more information about that and answer my questions so I can decide if I want to be a guinea pig, but it is the latest and greatest so you never know. But that is just one option. It is really hard trying to figure out what treatment I have the best odds of getting through and will kick me back into remission. It is hard making these decisions when one of the side effects listed is death. How about headache, blurred vision, nausea maybe, but death? I know that is the reality of it, that was the reality of it last time, but I got through it then and I will get through it again…with my Team behind me. The reality of it is I am going to kick cancer's butt…one way or another, whatever way I choose. It may get ugly, but my cancer IS going to get a beat down! And all that black vacant area of the scan image…I am not going to get caught up in that image or let myself be drawn into the fear. I choose to believe all those swollen inflamed tumorous lymph nodes are trying so hard to work for me…to protect me and chase the toxins and cancer cells away from my body. So maybe they had to get huge to do that, but they are trying so hard and I am going to keep on exercising and eating healthy and keep giving my body all of the resources it needs to fight. I haven't been able to do weights or exercise much since my biopsy, but I have managed to cycle on the bike trail 7 miles every morning before work. Exercise is the only power I have ever felt over my disease. So if I can cycle, even a little bit every morning, it makes me feel like I still have some control over my health. It is one of the ways I know I can help Team Vicki. Thank you for reading this and thank you for being on my Team!

Thank God for work.

The rest of my work week has been somewhat challenging but the work has kept me focused. I really like what I do and regardless of what is happening I still want to help my attorneys and make their day go as smoothly as possible. I don't like drama at work so I have tried to keep it in check so we didn't end up flooding the place, but it was hard. I try to keep a smile on my face so sadness doesn't overtake my space and for the most part I haven't been sad, I am still somehow happy, hopeful even joyous. I look at the picture of my 3 little grandsons on my desk and everything is right with the world and I'm still happy. There are such kind caring people here at work and it makes it so much easier for me. I have such good friends here that I love so much. And the firm has been amazing with the way they have treated me and are trying to help me. They tell me "we" will get through this and when I hear that I realize I am not alone and people will help me. It really took a load off my heavy shoulders to know I had their support and they would help make this easier for me. All the hugs, cards, flowers, emails, kind words…it really has made a difference. In one of the emails they wanted me to know they were on "Team Vicki." That was so cool to think I have a whole team, that I am not alone. I am looking forward to the Memorial Weekend and then next week is my last week of work. I start my leave June 1st, but I WILL be back.

May 19, 2009 -- the day of very bad news

Tuesday, May 19th, was my visit with my oncologist, Dr. Wun, to go over the results he had already relayed to me on the phone and discuss treatment options. My sister Jann, my son Jeff, my best friend Robin were with me to help me listen and take notes. Dr. Wun is such a great doctor and I feel blessed he was my doctor the first go around and will still be my doctor this time. Dr. Wun and his nurse Christine always made my visits to the Cancer Center easier and although I hated being there, hated driving down the road leading there, I always liked seeing them. I mean if this is my reality, at least it is with good people. On Tuesday Dr. Wun very carefully explained everything and all of my treatment options in his intelligent doctor way. With computers and all the technology this time he was able to show me my scan, a picture of my body like you would see in one of those medical magazines, but in a 3D version he could rotate front side, back side. It was pretty amazing. But what struck me was the thick black lines down each side of my neck, and other black areas, and then below my chest all the way to my groin this solid vacant large black area from side-to-side. I was confused and had to ask him what all of the black areas were. As he explained that those black areas represented the cancerous tumors, that they grew and were inflamed and had become this huge black vacant mass on the computer screen, I froze and tried to keep my mouth from dropping open. For the sake of the others in the room I was trying not to look as shocked as I was. The mommy part of me didn't want my son to see it…I was wishing I had something to throw over the screen, to protect him from the reality of it. If I had know it was that bad I wouldn't have let him see it. I knew they said I had swollen lymph nodes throughout my body, but I figured one here, one there, but not that, not like that. How could that be? How could my body let me down like that? I rarely have a drink of alcohol, never smoked or took an illegal drug in my entire life; I don't even like to take an aspirin for a headache. Even when they gave me a prescription for a narcotic for the pain after my biopsy I didn't take it. I try to buy organic nutritious food as much as possible, I really pay attention to what I eat the majority of the time, and I exercise all the time. How could I be this sick, how could my body look like that. My son stayed stoic I think but I couldn't look at him for awhile. My sister and Robin held it together while we were in the room diligently asking questions and listening to Dr. Wun, taking notes. In the end my sister had to walk outside and broke down. She was as shocked as I was but sometimes I think it is even harder on the people around me. I hate that. I hate hurting my family and friends.

One of life's interruptions

So, back to my illness. I try to see it as more of an interruption. One of life's interruptions that I am being forced to deal with. I had a scan on May 1st and a biopsy on May 4th. It is funny how I am not that great with remembering dates, but I rarely forget the dates of my tests. I can tell you the dates 9 years ago of my initial doctor visits, tests, biopsy, the day I got the biopsy results, the first date I went to UCD Cancer Center, the date of my first chemotherapy treatment. Once I started my treatments a lot of it is somewhat of a blur, but I remember the date I got the results of my retests after treatments ended. July 3, 2000, my celebratory anniversary date of my remission. I never forget those dates even after all these years. The day of my biopsy 18 days ago I was waiting with family and friends at the UC Davis Surgery Center. You learn to wait at hospitals and doctor appointments. Finally I was done being prepped for surgery, my cute little hospital cap and gown, and I remember just wondering how I got there, back in doctor world. I mean how in the world could this possibly be happening. When you get in doctor world it is hard to get out. Not that long ago I had been just doing my thing, working, exercising, and joyous over my 3 little grandbabies, and then boom, there I was, back in doctor world and hoping that the scan was wrong and the doctors were wrong, that there had been some sort of mistake and the biopsy would prove it. Nine years ago I was just so sure that they had made a horrible mistake and there was some other explanation for my lumps and symptoms, but I was wrong and I was shocked that I was wrong. And this time it was not a mistake, the biopsy proved what the doctors told me…that I had relapsed and now had Recurrent Refractory Follicular Non-Hodgkin's Lymphoma. Refractory in medicine meaning unresponsive to medical treatment. Not good.

Not just good people; really great people.

I have such good people in my life. I mean really great people, not your average person, but just awesome people. I have a large family, brothers, sisters, nieces, nephews, great nieces and nephews. It is so cool to be in a big family and my parents are the best parents you could ever ask for. My parents are getting their wedding vows renewed in the church next weekend and I am very excited about it. And my sons. I mean who could be as blessed as I with such three wonderful sons? We have been through so many trials and tribulations as a family, but we got through it, are still getting through it, and my boys mean the world to me. When I think of any one of them my heart just warms with the love I feel for each of them. I love them all so much. And everyone knows about the triplets. When they were born even complete strangers trying to mind their own business in line at the grocery store had to hear about my amazing grandsons and their amazing parents. I will talk more about my beautiful family in the days to come. But besides my awesome family I have awesome friends. I have just wonderful friends. I have friends I have known it seems like forever. I have friends I use to work with. I have friends I met after my initial illness 9 years ago. I have friends at work that I have gotten to know over the last 6 years while I've been here. I was a member of The Leukemia & Lymphoma Society's Team In Training and am still an honoree member and they are like having an additional family. I just have amazing people in my life…angels here on earth. So it is no wonder I have a hard time feeling sorry for myself even under these circumstances…because I am blessed. I am so blessed and it just does not feel right to complain. At least not right now.

Rollercoaster Ride...

The last month has been a roller coaster ride of emotions. I am not use to that. I usually keep my emotions very even for the most part. I now have days where I am so happy and so full of joy that it strikes me as odd that I could be this happy facing such dire circumstances. Today in fact is one of those days. I feel so vigorous and full of life that it just doesn't make sense how sick the doctors are telling me I am. A few Saturday mornings ago I was on my way to boot camp and I was feeling so good, so joyous that it confused me and I was sort of questioning how or why I could be so happy under the circumstances. Then I realized I could feel God with his arms just wrapped around me, holding me, comforting me. And I remember, He was with me through my original diagnosis and treatment 9 years ago, and He is with me now, as always. But then I have had a couple days where I was so low I couldn't stop myself from crying and that was confusing because I can always put a smile on my face and stop myself. But I couldn't, for two days. It started on a Friday after work and it was confusing because Friday after work is "my" time after working all week, usually happy, ready to relax, plan something fun, and have a great weekend. But not that Friday. I prayed and I tried all my usual pick me up tricks and nothing worked. I visited family at our regular Friday night card gathering at my parents and it distracted me while I was there, but as soon as I left the tears kept flowing and they flowed into the night and into Saturday. I had so many people available to me 24/7 if I could have just pick up the phone, but I couldn't. I don't know exactly when the tears stopped, sometime Saturday evening I think. I am not sure why they stopped, maybe I just ran out of tears or maybe things I had to do got in the way, but they did stop thank goodness. That was the worst of the lows. Not that bad considering everything. Now I keep them to brief moments in the shower or occasionally while I am driving, but for the most part I have stayed positive, faithful, hopeful, happy. I still have my moments but I get over them quickly. I notice if you just go ahead and put a smile on your face it is hard to not be happy. So that is what I do, I smile, then I feel happy and remember I am happy. Joyously happy.