I can’t keep up October 31, 2007

UCLA called this evening and said after further review of my scans they now do NOT recommend radiation. They asked me for Dr. Shiftan and Dr. Coleman’s phone numbers so they can all be on the same page or understand why they came to different conclusions. This is just so confusing!!! One day we have YES, the next NO. I just don’t know anymore. This is just craziness. So I hope to hear back from them tomorrow. UCSD also called and I need to call them back tomorrow. So stay tuned I know I sure am. What a ride!!

The kids and I had a full day of activities. I sure don’t have the energy or patience I use to. When my energy wears so does my patience. Luke is quite a handful! I hope you had a wonderful day!
HAPPY HALLOWEEN

Loosing Brain cells October 30, 2007

I really thought it was bad after having my 3rd baby remembering things. But now I can barely remember my thoughts once they have left my brain. I’m hoping it will come back along with my general health. There truly is an organized, volunteering, outgoing Mom hidden somewhere deep within me waiting to emerge. Maybe with the growth of my hair I can make a new beginning. So you want an update health wise, I’m sure. So here are the facts 3 weeks after chemo: I have a UTI, yeast infection, cold and horrible chest pain. I’m deliriously tired but I’m faking it very well. I occasionally will collapse when my legs randomly give out. I get really dizzy and light headed and of course I’ve lost my short term memory. Besides that things are going well. I haven’t missed the bone pain, or mouth sores this week. I will start radiation on Monday and we shall see if they can make me a new woman! Enjoy all those precious brain cells – you don’t seem to miss them until they are gone.

God is funny October 29, 2007

Just when you think you have made up your mind, things change. After finding out I don’t have liver cancer, I was so relieved. It seemed this huge looming cloud was lifted and this HUGE scary radiation thing wasn’t so bad. I was almost thankful that this was now my choice, instead of going down a whole new route of cancer. Perspective is a funny thing. I got a good does of, “Things could be a lot worse so be thankful for what you have” after hearing the great news. I told Russ I was ready to start radiation. I called to confirm the apt that I was going to cancel. Then I mustered up all my courage and was going to go and face this head on. Then I get a call that the radiation machine was down along with their servers. So they needed to reschedule my apt for tomorrow. So I think to myself, “is this a sign”? Is this some sick joke to just prolong my anxiety. I have to just shake my head it is almost just too funny! Who would have thought today of all days the radiation machine goes down. I’m not too thrilled about going in tomorrow after the machine was just fixed. I don’t want them working out any of the bugs on me. I think I will start next Monday unless of course the machine breaks again. Then I will think maybe, that is a sign.

Trunk or Treat was really fun. The kids had a blast. Once Luke realized people put candy in his bag when he held it out he started running to the next car. Here are some pictures of my three ninjas and of course their Chemo Mom. I dressed up in Camo and put chemo girl stickers on my shirt. The boys were thrilled to pieces that they dressed Sariah up as Sacajawea.

Quick Update October 29, 2007

The PET scan came back with no metabolic activity and no abnormal lymph nodes. So we are clear for radiation.  AHHHHHH!!!

I’m so happy on one hand and so scared on the other.  So with good news on one hand I realise life could have dealt me a much worse card here.  Thank you for all your prayers!  Here we go…..ready or not!

Cautiously optomistic October 28, 2007

I lay here not being ale to sleep even after taking 3 attivan and being extremely tired.  My mind just can’t seem to settle.  I want to believe that that everything is fine with the liver and its just a weird glitch on the PET scan.  But on the other hand I want to prepare myself for the worse.  If that is even possible?  I just keep running the gamut of emotions here.  Thinking well if it is nothing what a waste of emotions and energy.  If it is something can I get through it with out loosing my mind?  I’m a mess of thoughts & emotions.  I’m already upset about radiation but realise I need it.  It’s like chemo I know I had to have it but it didn’t make it any less scary or horrible. I feel that about radiation.  I’m just scared of them frying my insides.  I’ve seen the movies where people are exposed to radiation and then slowly and painful die and there is nothing anyone can do.  Now here I am expected to go willingly into a room and have my head and legs strapped to a table and let them laser me.  Psychologically it is all messed up.  Did you  know there is a 3 foot thick door in the radiation room so no one else will be exposed.  But I will once again lay there exposed and let them do there magic.  This is one of those emotional vomiting blogs.  It’s a rough night for me, I don’t feel calm.  I told Tyler part of being an adult is learning to be patient.  I said this to him to remind myself of this also.  I know I want my answers NOW and am so anxious.  But unless it is good news how soon do I really want to know.  Whether my battle is going to get bigger or move on is still an unknown.  Sometimes ignorance is bliss.  I should just relax and know that it will all work out one way or another.  This is one of those things that is out of my hands.  I’m learning so much about not being in control.  Life dishes us things to teach us lessons and mine today is once again to remember I’m not in control.  Just have faith that it will work out the way its suppose to & have faith I will be able to get through the night and just take it one minute at a time.  So here is to taking on our trials one minute at a time.

Beyond tired October 27, 2007

I really thought I would be back on my feet running full pace at this point. I was so excited not to have chemo on Tuesday. I’m a walking zombie, which I guess is very appropriate for the Holiday! I can’t sleep enough. I can barely get out of bed in the morning only to find myself wishing I was still sleeping when I’m up. I didn’t realize my body would need to recover at this rate. I guess I just expected to be better when the toxins stopped.

Yesterday I spoke with UCLA and they reviewed the scans with the radiologist and the radiology oncologist and agreed that I should get radiation. Then UCSD called and said after reviewing the scans with his radiologist he has changed his opinion. He also agrees now that I should get the radiation.

Boy am I tired!!! I think emotionally I’m shot. I’m still on pins and needles waiting to hear what the suspicious spot on my liver was in the PET scan. Who knows???? So I’m holding off on radiation for Monday until I find out what the PET scan report says. My roller coaster has been stopped, leaving me hanging upside down. I’m terrified, tired and hopeful all at once. I just pray I have the strength to accept and cope with the treatments and tests ahead of me. I’m off to take a nap so I’m up for Trunk or Treat tonight. My boys have had me promise a MILLION times I will be well enough for Halloween fun. So I’m going to dress up and be a healthy Mom for Halloween with out any worries!! Nice to be able to pretend for the evening.

Temecula Turkey Trot October 26, 2007

Okay all you suckers who signed up for Team Lymphomania and the associated 10K (that’s 6.2 miles)… your time has come.

Susan has asked me to handle getting the list of participants together. This means that if you still plan on running/walking/crawling the race, you need to make your final commitment and notify me by October 31st. You can let me know either by posting your name here, or by emailing me at moore.ryan@gmail.com

The number of people in our group will determine our registration fee. So please do not commit and then back out. You will screw up the numbers and then everyone will have to come back and pay more. Then I will send one of my henchmen to break your legs and take the money from your wallet. Once you have committed I will expect a check from you whether you actually show up to the race or not.

On top of the registration fee (which I am estimating to be somewhere around $20 – 25) we will be making arrangements to have special Team Lymphomania shirts printed. The logo is a custom design just for us. Please indicate whether or not you want a shirt. We may be able to get them for as cheap as 5 dollars, but if that printer falls through it may cost as much as 10-15 dollars.

I will arrange payment options as soon as I have a head count. It will likely be through checks or PayPal or something…
In summary:

• You must commit in the next couple days
• Cost will be less than 50.00/person including race registration and shirt

The Roller coaster continues October 25, 2007

For all you late night blog readers you get to hear the drama continue first. We went down to UCSD for our 2nd opinion with Dr. Holmon and his opinion was not to do radiation. As far as all the reports he had none of them confirmed that I had 10cm mass to classify this as bulky disease and thus would not recommend radiation. Our heads were spinning out of control at this point. We called the radiologist that originally read the PET scans and had a meeting with him to go over his findings. He found the measurements to be 6.5 x 4.7cm on the largest mass. So this puts us in a non radiation category. We are anxiously awaiting the reading from UCLA and UCSD from their radiologist to see if they come to these same findings.

Then I went in for some blood work. YUCK. And off to get a PET scan. The PET scan was the same long process as it was before. But at the end we looked at the images like we always do and found to our surprise that it is no longer clear as it was before. There is a dark spot on the top of my liver. The radiologist said she couldn’t call this a clear PET scan due to the fact that she sees this funny dark shadow on my liver. What this means……….I have no idea, I can only imagine! I’m beside myself as you can imagine. Cancer is the only thing that lights up on these scans. So I’m hoping with all my heart this is nothing but……I can’t figure out what it could be. I just find myself once again in a day where time just stops and I can’t seem to breathe. Just waiting and counting the minutes down until we hear what this means. This is another one of those life changing moments. I know many of those who are dealing with the fires are feeling this same unknown terror. The unknown can be so scary and time just feels like it goes in slow motion. My prayers are with us all that we will get the answers soon and be able to handle the reality that comes with truth. Sweet dreams to all!

UCLA October 24, 2007

Well me made the long, long trip up to UCLA today. It was a smokey ride. The oncologist there agrees that we should do radiation if the tumors measure larger then 10cm. They are sending off the CT scan to have their radiologist read the scans themselves. So the only thing debatable is the measurements. I did learn a few interesting facts I didn’t know. The PET scan can only detect cancer that has more than 1 million active cells. It only takes 1 cell to metastasize. So that is why they do 2 more chemo treatments after a clear PET scan and do the radiation on top of it. Getting Hodgkin’s again would be very dangerous she said b/c I would have a much harder regimen of chemo and a bone marrow transplant. She said by the time they find a bone marrow match it can be too late. My head is pounding and I feel resigned now to the fact I will probably have radiation. We meet with another oncologist Tomorrow at UCSD for their opinion. I have a feeling it will be the same. They seem to have a standard of care for this disease that they don’t waiver from. I’m crossing my fingers and praying hard that this is the right choice.

Life keeps going October 23, 2007

I’m always amazed that life seems to keep moving in spite of horrific events that happen. I’m watching the fires and have family and friends who are loosing their homes and businesses. While the world watches these scenes unfold on the TV, we still keep moving right along with life. We still have meals to cook and errands that can’t wait. I know how we want the world to pause and stop while our emotions have time to catch up to us. I pray these fires will stop soon and all who are effected by this will be able to rebuild & find the inner strength to pull through this.

Russ and I have our 2nd opinion at UCLA tomorrow at 1pm. I’m anxious and hope that this will help guide us in our decision. I’m still having horrible horrible pain down my left arm and in my chest. It had spread down my leg yesterday but is better today. We are stumped as to what is causing all this PAIN. It could just be the fact I have a few tumors on my heart. Or it could be that my insides are all trying to shift after shrinking all the other tumors that had filled my chest. I’m disappointed that I’m not feeling better. I was sure hoping that this week I would feel like I did before chemo. I’m absolutely exhausted and the pain can be quite overwhelming. But I guess this is just part of the effects. I hope we can find some answers so I know this isn’t permanent or more serious. But on the scale of thing how many things are more serious then cancer.

I hope you all have a wonderful night and hold on tight to the ones you love. No matter what happens in life we still are capable of loving one another.