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