News from radiology

I had a visit with my radiation oncologist today - I really like this guy. One concern I have is that once the four weeks of radiation is up that it will be my only shot at radiation therapy. He reassured me that it is not the case. He has taken a slow approach with me so we have wiggle room at the end to do more if necessary. I told him I needed this to work since the mini transplant was risky. Sharing the pressure of the situation is only fair in my mind.

He will also look up my last CT scan and measure my mass to see if there was any shrinkage from the one prior. He thinks yes but didn't want to commit until he had a chance to review the slides. Should have an answer on that by Monday. Radiation oncologist are so cool to work with because they can actually read the slides! They don't have to wait around for some technician to write up a report......it's like cutting out the middle man.

The radiation is going fine. I am just tired and nauseous - what's new.

The little z's are gearing up for the onslaught of holidays since we celebrate both passover and easter. They will get a fair amount of time with family and spoiled by relatives. Dave is out of town since his new job has started to pick up - there is a lot of travel scheduled for these next months. Not the best timing but they carry our insurance so no room to complain.

5 down, 15 more to go

I finished up my 5th radiation appointment today and only have 15 more to go. Still no major side effects. I am just a little more tired and have a scratchy voice in the morning. Today they had yet another discussion about my boobs and the fact that they don't need to tape them down.....enough already! I can take the hint that I am due for a lift.

Some exciting news - I have my eyelashes back and my eyebrows are coming in. I also have some fuzz on my head. I wonder how long it takes to grow hair? Hopefully not too long....I can do without the stares from strangers sooner than later.

I will post tommorow after my appointment with the radiation oncologist.

Video of the kids for Aunt Michele

I made this video for Aunt Michele. She loved the other video so much she requested another. This time the kids and I are talking about body odor so fair warning to turn your sound down. Also, "cutest baby ever" is Michele's name for Alex......although we all agree.

Friday was a long day

I had a long day at the hospital Friday and I wasn't up to posting until tonight. I saw my oncologist and inquired about options if the radiation doesn't work. The plan has always been to have a mini transplant. The mini would involve using my sisters bone marrow not my own like last time. There is a question about doing a mini considering my liver complications last time - it would definitely be high risk. Also the mini itself if high risk. Essentially my oncologist said I would ultimately have to weigh the pros/cons myself and make the decision. Also in his view the mini is the only way to a cure and everything else is just treatment.

This is all just info to consider if I have to compile a plan B. God damm this radiation HAS to work. I don't want to go down the plan B route at all. The entire visit just shook me up a bit. It has me thinking way to far down the road and I need to return to the moment, live for the day, and push all this stuff aside.

I did get to see an old friend from my days back in Atlanta and the Boys & Girls Club. It seems like yesterday that Dave and I were hanging out without a care in the world. Skip ahead to 3 kids and cancer....boy how life can change.

Back to the hospital next week for 5 more radiation treatments. 3 down and 17 more to go.

Have a great weekend.

Tattooed

I am officially a tattooed women! 2 to be exact. I never got a tattoo before because I couldn't think of something I liked enough to want to live with it forever. Well I will love these 2 little dots the rest of my life if radiation kills my cancer.

The tattoos actually marked the end of my first radiation appointment. Overall it was pain free and quick. I think I will like this treatment the best. The only thing that sucks about radiation is my mask. I found out today that the mask shrinks once hardened and the thing is really tight! They didn't screw down the bottom screws because it was so obviously tight. Something that isn't pretty about radiation is "waffeling" - that is when your face has these lovely waffle imprints all over it from the mask. You are a dead ringer for just leaving radiation in the rest of the hospital.

A funny side note that all the mom's will appreciate. My doctor said he would tape my breasts to the side to avoid any rads getting to them. I asked the techs if they planned to tape and they nicely pointed out that by boobs fell naturally to the side enough that it wasn't an issue. Thank you Alex, Charlotte, and Leland for that!

So one treatment down and 19 more to go. Every day at 10:45 AM for the next 4 weeks. I imagine it will go by fast and hopefully without any complications. I can live with a little waffle face for the next month.

Video of the kids

I put together a short video of the kids for my sister in Russia. Warning - turn your volume down if at the office since my kids like to talk about bowel movements! (Just click on the title of this entry "Video of the kids" and it will take you to you tube).

Honestly the video is boring but if you are far away and need a little z fix it should do the trick.

Enjoy.

+62 Lungs

I went up for a pulmonary function test today. My radiation oncologist would like a baseline test before we begin radiation so he can monitor my lungs throughout the next couple of weeks. Since I had (the ICE cleared it up) involvement at the top of both of my lungs they will radiate those two areas. I had a PFT test prior to the transplant as well. The guy that administered the test said my function is slightly lower since then but not by that much. Not to shabby considering I had or possibly still have that pesky pneumonia. Do I still have it? Who knows....my doctor says the chest xray doesn't show improvement as fast as my body recovers or I feel it. His theory is if I feel fine he thinks it's cleared up. Honestly I have never felt the darn infection. I consider myself very lucky.

Dave and I had a good weekend with the kids. We took them to look at playground sets for the backyard. Of course they would like the largest one available. It is hard to tell them that 1 it won't fit in the yard and 2 who would possibly pay for it. Lee is always offering up his piggy bank for the second reason. He doesn't understand that his 4 bucks doesn't put a dent on this type of thing.

Alex has officially fallen off the wagon when it comes to sleeping through the night. Essentially he wants what he wants when he wants it. I know he gets that from me. Charlotte has the same tendency's. I will be in for a fun time when they are teenagers.

I emailed out pictures of the kids. If you didn't get them and want to be added to the list just let me know.

Alese Coco

For those of you that have been following Alese Coco's site there is grave news today. Her parents posted that the doctor's are asking them to make end of life decisions. This young girl has touched me because she has fought so hard for such a long time. She has always remained positive and is such an inspiration. My heart is just broken for this family.

For anyone out there that still thinks Hodgkin's is the good cancer they need to open their eyes. There is no such thing as a good cancer.

+59 That went by fast....

My week off from the hospital went by way too fast. Next week I have a pulmonary function test, radiation, and my 60 day check. My 60 day milestone is actually tomorrow on St. Patty's day. I think I have some Irish in me somewhere; Michele would know.

Most days I still can't believe that this has been going on for a year. I am constantly amazed that Alex is here and so healthy. Not to mention that Lee and Charlotte have managed this entire mess so well. It has been a lot for all of them to deal with and I am so proud that they are still happy well behaved kids.

I will post next week with any updates on my radiation and check up. Hopefully things are uneventful and go according to plan.

+56 Enjoying the time off

I have the entire week off from the hospital. This is exactly what I needed to recharge and gear up for radiation.

I am getting back to that good positive place I was at before the awful PET scan last Friday. I will pray that it was a false positive and that radiation will end this cancer journey for me. I have also decided to stop saying I will do things once I get better and to just go ahead and do it now. I realize I can't do everything I used to do since I have all these new restrictions on my life but I can still get out and live for the day.

+ 54 A year ago today

A year ago today I began my chemo for this entire mess. We are having a little get together at the house with family to celebrate 1 year of beating this disease.

I got my test results back from the PET scan. Not too hot... I still have moderate uptake in all the usual places. There is a 50% chance that it can be a false positive since we did it so soon after the SCT. Essentially the activity on the scan can be inflammation from the chemo. Needless to say I wasn't happy about the results and really question why my doctor did it so soon. We do think that my original PET was high uptake so this could be good news that is only moderate. The tests are on a scale of low, moderate, high. Every being of my body wanted a clean PET scan so I am bummed about the test. I have to remind myself that I am still beating the cancer and have radiation coming up. Hopefully the rads will kill the disease once and for all.

I am trying not to see this as a set back and remain positive. The party today will definatley help.

Thanks to everyone for their support.

+52

I had my PET scan today and should know the results sometime this weekend or Monday. While I was waiting for my PET a guy had a code blue on the machine and totally freaked me out. I was already nervous about the test and then to see that happen was awful. He is fine but it was still crazy.

I also saw my doc today for a quick visit. I am most likely in early menopause but we can do a test to determine for sure. I have been getting hot flashes at night - they suck! This is common for someone that has had so much chemo.

I think I have a week away from the hospital - as long as I don't answer any calls with a 410 area code I should be cool. I need this break in a big way since radiation is gearing up and then I am back every day for a month.

I need every one's prayers, good vibes, and positive thoughts for this PET scan result! I will update as soon as I get the news.

+51

A lot of news again from the hospital today. My counts are up - even my neutrophils! After my count check I attended a discharge class from the in-patient-out-patient center. I learned a lot about what to will happen this next year. I guess we knew how serious this entire transplant was prior but I was just so anxious to get started you kind of brush off all the after effects.....now they are here staring me in the face. Didn't have a choice did I.

After discharge class was my appointment with my radiation oncologist. We discussed the tentative plan, all the side effects, and then they staged me later that afternoon. They want to be as precise as possible and avoid my lungs and breasts since the possibility of a secondary cancer in 10 years is very high for me. To avoid radiating other areas they created a "cradle" that I lay in so every time I have radiation I will lie in the same exact way. They also made a mask so my head and neck will not move. If you are claustrophobic I do not recommend the mask. I even freaked me out a bit. I officially start radiation on March 21.

I also got my catheter removed today. It was pretty quick and painless. I can have a normal shower in 5 days!

I get a PET scan tomorrow and this will really tell us what is going on with the cancer. This is the scan that lights up the active cancer cells like lights and we will see how well the SCT worked and what radiation needs to clean up.

I am exhausted from today - my mom and I were there all day. I received so much information I will have to write about it over the next couple days to process it all. Information about my quality of life for the next 2 years, what to expect from radiation, details about my mass, details about the other nodes in my neck, lungs, armpit, and side effects, side effects, and more side effects. It was what Dave and my mom call and "action day" - big time.

I just need to keep focusing on getting better, keeping my counts up, and melting this mass. I visualize melting every day. I am melting this big mass out of my body.

I will post more tomorrow after the PET. Hopefully they don't make me wait all weekend for the results. Nerve wracking since this test is a little unexpected. Pray that nothing lights up on this scan. That would be a miracle.

+48

A lot of news to report from my visit to the hospital today. My counts are all coming back except for those pesky neutrophils. They are still in the 450 range. My docs are changing my meds around a bit thinking that one of them is holding up the show. They are also discharging me from the in-patient-out-patient center to the strictly out-patient center. It is located on a completely different floor so I get a change of scenery! Also, since I shouldn't be needing any more blood products (transfusions) I can drive myself to these appointments and give Louise a break from carting me around town. They also say it is time to get my nifty catheter out on Friday. This is a good milestone since it should mean I won't be needing fluids and blood products. But I must admit I have enjoyed not getting stuck with needles these past 3 months. With the removal of the catheter comes pricks.

I don't have to go back until Thursday for my radiation consultation appointment and discharge class. After Thursday I can report on the radiation plan in more detail. From what the radiation doc said originally this should be about a 4-6 week process.

They are also setting up my 60 day workup appointment. They will rescan me to measure the mass and do a bone marrow biopsy. I questioned doing the biopsy since I have never had cancer in my bones previously. Supposedly they check to make sure they didn't introduce cancer to my bones when they gave me my cells back with the transplant. Didn't even know that was a freaking possibility! I am sorry I ask these questions sometimes. So now I am sweating that test and it's results. Before I was just dreading the pain associated with that big fat needle going into my bone.

Overall I feel like today was a turning point. I am leaving the floor that I was admitted and have spent so much time these past months. It is time to look forward towards radiation and leave the daily transplant nonsense behind me. Sure I am still a bald headed, mask wearing, holed up in my house freak show but I need to come to terms with the fact that this is just my life right now. Sure they will monitor me weekly but hey it's not daily! This too shall pass. I will be able to throw away my masks and go out in public again one day.

I just need to remember I am alive, I am not in the hospital, I get to hug my kids, see my husband, and be home. Home is good.

Maple - our first baby

Okay - last but not least Maple Lee Smith (yes she didn't feel the need to change her last name) is getting her due respect on the blog.

I got her while living in Atlanta. I answered an ad in the paper and arrived at a strangers house only to be greeted by a sea of fluffy puppies. Maple lived the high life in Atlanta with runs, walks, daily visits to the park, hiking, and camping. Then Dave and I got married, the kids came and the rest is history. Although we haven't been able to shower her with the attention she deserves she is still the best and we think cutest dog in the world. Since I have been home she is getting her daily walks again and looks better than ever.

Gotta love the mutt!

Dave

I am posting a picture of Dave (with the kids at the Ren Fest) since he commented the other night that he was missing from my blog.

+45 roller coaster counts

Another day at the hospital and more low counts. I was so excited that they were coming up on Wednesday but today they are back down. I will most likely get a shot to help boost my system on Monday when my doc is back in the office. I am getting a little discouraged since it seems like my body takes its sweet time to recover from things. I had hoped for a break from the joint before radiation began but it just doesn't look like that is going to happen.

Plenty to be thankful for so I need to remind myself to live in the moment and move on.

Good news is I don't have to return to the hospital until Monday; another weekend to rest and enjoy the family.

I will update Monday with any news.