Back to Baltimore

My first day off from driving to Baltimore and I have to go back today. I have developed a rash that looks a lot like shingles. The doctors want to check it out and get me on meds if needed.

I wonder why I always develop these skin issues. First it was the fungus and now this weird rash. My body has a strange way of expressing iteself.

Hopefully my rash will disapear, my counts will come up, and Alex will continue to feel good.

Alex and the end of rads

Alex is feeling better and his fever finally broke on Thursday. The doctors diagnosed him with a urinary tract infection and he has begun antibiotics. Unfortunately a UTI in babies is a little more complicated than us adults. He will have to be evaluated at either Hopkins or Children's for complications. Problems that cause UTIs include blockages and a condition called vesicoureteral reflux (VUR), in which urine backs up from the bladder into the kidneys. Once he finishes his initial round of antibiotics we will do the testing; about 2 weeks from now.

I am just happy to have a diagnosis - the unknown was killing me.

I had my last radiation treatment on Friday! I will have to go up to the hospital to have my counts checked every other week. A lot better than driving up every day. My counts are still low and my skin is really irritated. Hopefully this will all clear up in the next couple of weeks.

We are focused on getting Alex better, his testing complete, and hanging out as a family. I can't wait for the day when we will never have to go to Hopkins again. Alex getting sick really threw me for an emotional loop.....I can handle the roller coaster ride my cancer has put me on....but I don't want to be on a roller coaster with Alex. We pray this UTI is nothing serious and he won't have to be poked, pricked, and prodded too much.

Doctor update

I saw my radiation oncologist yesterday. We set up the PET scan for 6 weeks after the radiation ends (this Friday). This is the test that will show us (hopefully without any doubt) if there is any live cancer left. There are a couple of scenario's that will happen based upon the test:

1. It's clean and I am in remission
2. There is a small area lighting up and we will boost it with radiation
3. There is still a large area lighting up and I will have to consult with my oncologist about next steps.

I am pulling for #1 and that this will all be over.

Over the next 3-6 weeks I need to be on the look out for any signs of a cough or fever that would indicate an infection in my lungs. My skin will heal about 2 weeks after the radiation is over. I will forever need to keep my radiated area out of sunlight and watch the moles on my back for cancer.

Other more important news....
Alex had some shoots last Thursday and has been experiencing fevers since. They are high and a bit worrisome. We have been in constant contact with his doctor and should see them again today. Dave and I are just torn up that our little guy is so miserable. We pray it's nothing serious, the fever breaks, and he can keep from being admitted to the hospital.

I will keep everyone posted on Alex.

5 more to go

Last Tuesday wrapped up my original radiation and my boost started on Thursday. I actually got Wednesday off!

I only have a total of 7 boost treatments so that means only next week and 5 more to go. On Thursday I got the lab results back from my latest blood draw. My counts are down and I am close to neutropenic again. They are going to check me again next week. If they go much further down I have to begin taking another antiboitic, wear the mask, avoid the public areas, and stear clear of the kids if they are sick. Since the boost radiation is higher up on my chest and neck I am praying it doesn't effect my counts as much. I dread low counts and hold out hope that they will bounce back soon.

Daves birthday is this week and we plan to celebrate next weekend with the family. I can't believe it is the end of April. Were does the time go?

More news from radiation

I met with my radiation oncologist on Monday. He has decided to do a boost that will last for seven more treatments. I saw the PET scans that he reviewed with the technicians and there are essentially 2 spots (one on my neck and upper chest) that are still active on the PET. Again after reviewing the PET scan with a tech that he feels knows what they are doing he thinks the transplant worked better than it was originally reported.

Great news in our book! I am glad all that transplant nonsense wasn't a waste of time and did what it was supposed to. My radiation oncologist is very positive that this boost will get rid of anything else and hopefully I will be in remission.

We perform another PET scan 1 month post radiation treatment - should be the end of May.

Dave, the kids, and I are all getting so excited that this could be over soon. We are all just sick of me being sick. The docs say the effects of radiation will last about a month after the final treatment. Also, with this boost my throat will get worse, skin more sensitive, and more tired. I am having problems eating and swallowing. Really this radiation is nothing compared to the transplant and VOD.

My laptop is on the outs so my posts are less infrequent. I will try to update again this week.

Thanks for all the continued support, prayers, emails, and posts.

Test results

My radiation oncologist called with the CT results. Essentially the CT does not show any shrinkage which was expected. The CT is limited and does not tell us what in the mass is active cancer cells or residual mass. My radiation oncologist did however review the PET results from several weeks back (before we started radiation) and thinks the area that was active is less than they originally reported. He plans to increase the radiation, target only the areas that were lighting up on the PET, and do this for about 1 more week. I heard all of this over the phone and I have a face to face meeting Monday. I like in person much better than over the phone. I need to see the pictures so I understand exactly what he is saying.

After sitting down with the PET technicians and reviewing that test result again he feels that my cancer had reduced more than my medical oncologist and the report originally stated. This is great news. He also thinks that there is a possibility that the radiation we have already performed has killed the cancer but we won't know for sure until they do another PET. He plans to do another PET one month after we finish radiation.

Lastly I still have some fluid in my lower lung and he wants me to call ASAP if I develop a cough. I guess maybe the infection is still kicking around? I certainly don't feel it.

So this sounds like really positive news. Again I want to see everything on Monday but hopefully this really is the end and the SCT plus radiation killed the cancer.

I will update on Monday after I visit with my doc in person. Have a great weekend.

Scans and rads

I had my CT scan today and another round of radiation. We should find out the results tommorow morning or Monday at the latest. I am praying this radiation is effective and getting rid of the cancer once and for all.

Michele is in town and helping out a ton since Dave is out on business all week including this weekend. I am trying to break Alex of waking up in the middle of the night. I have had enough of midnight feedings. The boy is almost 8 months old and 20 lbs.....he doesn't need to eat in the middle of the night!

I will post tommorow with the results of the scan.

Easter

We had a great Easter with my Aunt Joyce, Uncle John, sister and mom. My mom talked Dave into wearing a bunny suit this year. I should mention a bottle of scotch was included in the deal.

I saw my doctor on Monday and we set up a CT scan for this Thursday to see how things are progressing. He said if there is no change then he will increase the rads. If the mass has shrunk then we will stay the course. He did however say I have 2 1/2 more weeks so I am not quite to the halfway point I thought earlier. Hopefully by the end of April I will be done with radiation. But whatever it takes to kill the cancer is what I will do.

I will post Friday with any news on the size of the mass.

End of the week

I am thrilled it is Friday. The drive to Baltimore is getting really old. If the appointment was longer I could see the point. But my visits are so short I get there and turn right back around. I have said so many times why couldn't have this all happened when Dave and I were living in Baltimore!

The kids are very excited for Easter. I am planning on taking them to services on Sunday as long as we are all healthy and feeling good. I am a little nervous about the exposure but I really want to go. I can always wear my mask.

Enjoy the weekend.

Alex

A picture of Alex that Louise loves. She calls him her little porcelain doll.

This little boy is so loved.

Halfway there!

Today marks the halfway point for radiation. Only 2 more weeks to go - unless of course the radiation oncologist feels the need for some additional rads once the initial treatment is done.

My radiation oncologist felt the CT scan associated with the PET scan done before treatment started wasn't good enough to take an accurate measurement. So I will have to wait until he orders his own scan after next Wednesday to see if my mass has shrunk lately. He is uncertain if he will do just a CT or a PET as well. He is also contemplating when after radiation to order a PET. My oncologist doesn't want to do the PET until 4 months post radiation treatment.....so I guess I will sit back and let them hash it out. It is crazy how your life starts to revolve around the tests and the results.

I have a new side effect of radiation, a low red blood count, what fun. They asked (mind you with a straight face) if I was tired since that is an indicator of low red counts. No shit I am tired you are zapping me every day, I just had a transplant, and by the way before that I had a freaking baby! I honestly cannot remember not being tired. Do I need to wear a sticker on my forehead? Does the bald head and mask not give it away?

Anyway....I get a shot tomorrow to bring up my red count and then maybe I won't require a nap and early bedtime. At least the counts aren't so low they don't need to transfuse me or send me back to the hospital.

I am getting anxious for the radiation to be over and hopefully this will be the end of treatments. Is it possible this could be the finish line? I pray it is.