Almost Half Way!

Radiation side effects are hitting.  John's throat feels like he is being choked.  The doctors said that basically he has a sunburned throat from the radiation so when he swallows then both sides of his sunburned throat are rubbing against each other.  It should get better and worse throughout radiation and then should go away. During the discussion with the radiation oncologist, I said that we didn't have potato chips at our house.  Dr. Poppe said he wouldn't judge us if we did and that John can eat anything he wants so that he can maintain his weight during radiation.  If John looses very much weight, his mask will have room in it for him to move.  They don't want him moving during the radiation since it is aiming at very specific spots. 

Because his last dose of chemo made him unable to keep up his blood pressure again, then he is going to be on precautionary fluids for a few days for the chemo he got yesterday. (He can get the fluids at home which is really nice.) Hopefully this keeps him upright when he is walking around. 

Yesterday we met with Dr. Wright.  I got a peak at John's schedule in the nurse's folder and asked for a copy of it.  We got the original schedule when we started, but she had an updated one showing the weeks counted out.  It was so exciting to see that out of 35 weeks we are on week 16!  They told us there would be 35 weeks of treatment, but to plan on it taking a full year due to fevers/sickness and other delays. We were planning on October to October.  I think we have only had two delays to the chemo so far and if we add in two more delays for the last half of treatment then we could be done by the end of summer!

Dr. Wright's nurse also told us that sarcomas are really rare but rhabdomyosarcoma is a common enough type of sarcoma in children that it is really well studied and they know the best treatment plan to get rid of it.  So that was reassuring to hear.

We knew that they were going to give John the lifetime max of his chemo drug called Doxirubicin before the end of treatment.  I asked the nurse about the theory behind doing that because we have read that if the cancer comes back it's harder to treat.  I wanted to make sure that if it comes back that they would be able to fight it just as aggressively.  She showed me the 15 weeks of treatment that they had excluded from our treatment plan, which was a combo of two drugs.  One of the drugs is one that John is getting (vincristine) and the other (dactinomycin) they were waiting to see if they could fight the cancer the first time without it.  And it looks like they can, because they haven't used it and the cancer has responded so well.  She said that dactinomycin will be instrumental in fighting the cancer if we have to end up doing treatments again without the doxirubicin.

So the schedule is next week 1/2 day infusion plus radiation. Then the 6 day hospital stay plus radiation (which will most likely be shortened to 4 days again).  Then his final week of radiation.  Then two weeks of half-day infusions and then more scans (end of April/first part of May).  After that he will have about 4 more 2 day stays and 2 more half-days of chemotherapy.

John's side effects include nausea and fatigue which are my pregnancy side effects.  So I keep telling him that he almost knows what it's like to be pregnant now.  We were talking with a visitor yesterday during John's infusion who said that chemo nausea is worse than pregnancy nausea (at least for her).  So now John's suspicion has been confirmed that chemo just might be worse than being pregnant.

Radiation

Tomorrow will be the last day of week 2 of radiation.  John's almost recovered from last week's chemo. He had a couple days that he couldn't keep his blood pressure up high enough to walk around without passing out.  He fell again and hurt his knee and ankle but thankfully no broken bones this time.  Last week he was inpatient for chemo and so he just had radiation each day he was there.  This week we have drove back and forth to SL every day for radiation.  We borrowed a book on cd from John's grandma (Unbroken by Laura Hildebrand) - that has made the drive something to look forward to. 

Today, after exiting in SL, John recognized the truck in front of us and the people in the truck recognized John through their rear-view mirror.  So we stopped by them at the light and John was able to chat with two of his friends from work.  We are constantly reminded how blessed John is to work at Westland - there are so many great people there.

This week has actually been enjoyable for me.  I like having something that gets us up and going for the day. During Tuesday's radiation, I planned a couple meals and then when we got home I went grocery shopping with a list - with actual meals planned.  This is probably the first time I have done that since treatments have started.  The past few months, I have only gone grocery shopping in the freezer isle or just to fill the shopping cart with diapers, formula and Powerade (which is one of the few things John can stand to drink with all the taste bud changes he has had with chemo).  Then on Wednesday, I actually made dinner! I really don't think I have made a dinner in months.  My family got together around the time of the diagnosis and made a bunch of freezer meals for us; so did John's mom.  And we have had friends who have randomly dropped off meals for us.  And half the time we are at the hospital, so we aren't even home to eat. 

Today during radiation, I was working on the puzzle in the waiting room.  Yesterday, I think I won a few games of Trivia Crack against two of my sisters :)  It's nice that technology allows us to hang out and play games even when we are apart. 

Kids

Room with a view

Because of John's last fever, the doctors decided that they would give him an extra week before starting chemo back up.  Then his mask mysteriously disappeared, so they had to make a new mask and re-map his radiation.  So, chemo and radiation started today instead of Monday.  Here's a picture of the mask.  Anyone that wants to see it in person can come visit us in about 8 weeks and we will have it on display at our house.

Progress Scans!

Kelli has done such a great job writing so far I haven't felt the need to add anything to the blog. Of course she wanted me to be the one to share our good news so I'm sorry you don't get to read one of her good posts for this update. :)

Finally after all the delays with my last fever and hospital stay, we were able to get the first set of MRIs and PET/CT scans done since my diagnosis scans were done back in September. We got a partial report back from the radiologist last week but there was quite a bit of confusing medical jargon throughout the radiologist's summary so we decided to wait until our Dr. called yesterday with an interpretation to share any news.

Anyway, on to the good news, my oncologist told us yesterday that the scans looked better than expected and that my progress both surprised and impressed her. Such a relief to finally learn that we're making some progress and to realize that the umpteen days we've spent in the hospital and countless other sick days have been and are worth it! When I was diagnosed, I had a number of tumors throughout my upper body and head- here is the current status of each of them:
Arm bone - now GONE
Collarbones - all GONE
Forehead -Shrunk partially
Neck & Jaw - Shrunk significantly (75%+)
Back of skull - Shrunk partially
Nasal cavity - Shrunk significantly (75%+)

According to my doctor, my tumors are sized and positioned to respond well to the radiation treatments which are starting on Monday and will last for the next six weeks. I'm definitely not looking forward to the side effects that are going to come with radiation but I'm anxious to keep progressing.

Here are a couple of pictures of me before chemo and currently. Aside from the obvious Mr. Clean makeover the biggest outward change has been that tumor on the left side of my neck/jaw is now completely undetectable when I feel my face. It felt huge when we first started and was what tipped us off to the problem in the first place.

We still have a long ways to go but I'm excited to be able to share this great news with everyone. Thank you all for you continued love, prayers and support!

John