CT Scan

The phone rang in the car...well I am surely never going to get used to having a cell phone that is connected via bluetooth to my vehicle...

Anyway we answered it and Rich talked to the doctor who did the prelim of his CT scan.

The doctor said "No evidence of cancer or a tumor." Although the scan did show evidence of a stroke that had probably occurred a few months ago.

If you need a reminder you can see the blog titled 911~what is your emergency?

I'm pretty sure this is the stroke they are talking about. So there was damage to the brain but nothing that showed up right away.
Let us not look a gift horse in the mouth.  

It felt like another elephant had been removed from our shoulders.
So as of yesterday Rich is free of cancer.  He kicked it in the butt with a lot of help from the Carbone Cancer Center and the VA.

Now we look forward and not backward.
Onward.

New Scan coming up

The CT scan of the brain will be on Thursday this week.

Rich's comments about the latest developments are basically this:
"What next?"

At this point I am trying to get the VA and the UW to be able to 'communicate' with each other better.
I'm not sure that is possible.

So until later this week, keep your fingers crossed.

3 Months Out/PET Scan today

Shall I say that I am up early and worrying and have been worrying for about a week now?

The dreaded and much looked forward to PET scan is today at noon.
Results will be at 3:30 PM with Dr. Witek delivering the good news.
I'm sure they knocked out the throat cancer.  We are trying to only think positive but are prepared for the other diagnoses.

Rich has said if IT isn't gone,[cancer has become an IT now in the house], he would consider a simple option but could never subject himself to the hell that he/we went through again.  We'd seek palliative care.

Radiation in high exposures do cause some radiation sickness like symptoms.  The radiation can attack your red blood cells, affect your intestinal system, and the blood cells that produce bone marrow.

Rich is still recovering from his treatments.  The Carbone Cancer center used Tomotherapy which:

"An important distinction between tomotherapy and other radiation treatments is that past methods exposed much larger areas of the body to higher levels of radiation distributed from fewer angles. Tomotherapy, with its ability to deliver lower doses from many different angles, affects very limited areas of healthy tissue and results in fewer side effects." 
From the Tomotherapy Radiation Univ of WI Madison



 So the next few hours and days will be interesting and hopefully very joyful ones.

Hair is growing back!

The last day of radiation was June 15th and Rich's hair kept falling out.  He had no beard and if you know Rich, you know he takes great pride in his luxurious mustache and beard.

Dr. Witek had told Rich not to cut his hair during treatment and that he would lose hair across the back of his head.

He did, but yesterday we saw itty bitty hairs coming back in.
His facial hair is starting to come back in.

This shot probably looks as though he is sad but he was just watching out the window while having morning coffee.

We were watching the mules drink water from the Big Tank.

We still seem to be battling some stomach/intestine issues but at least he isn't pain like he was before.

Yesterday was a 'good' day.  He felt like doing a bit more than he has in a while.  

Low Blood Pressure, Lymphedema of the neck

Some of the issues that are still creeping around with Rich are the Lymphedema of the neck, which he was told was 'normal'.
However it is bothering him and I have done some research on this condition.  I find it surprising that the cancer care providers haven't addressed this issue.

Of course dealing with the VA and looking for some Physical Therapy for this condition could be interesting to say the least.
I've been researching nih.gov and pubmed for information on what is called Head and Neck Lymphedema which is shortened to: HNL.

Less than 50% of HNC [Head Neck Cancer] patients get HNL and sometimes it can be pretty serious.  So I am adding this to the list of things we must see the doctors about.

From The Role of Lyphedema in Head and Neck Cancer

Clinically, the presentation of lymphedema parallels its level of severity. In the earliest stage, HNL may present as “heaviness” or “tightness” without visible edema. As HNL progresses, it is apparent as a barely noticeable fullness without functional detriment, and can progress to pitting edema that may or may not affect function. Although rare in HNC patients, lymphedema can present as grossly disfiguring elephantiasis with severe disability in its final stage.

Similar to other side effects that are associated with the treatment for head and neck tumors, quality of life is often significantly impacted by HNL. The effects of HNL are not simply cosmetic. Significant lymphedema of the face, mouth, and neck can result in substantial functional consequences to communication (speaking, reading, writing, and hearing), alimentation, and respiration

Yesterday Rich's blood pressure dropped from 133/68 to 119/67 within two minutes.  So obviously last week's visit to the clinic eliminated his BP meds but it hasn't resolved that particular issue.

Yesterday I did find a site that showed how to do home physical therapy to drain the damaged lymph nodes.  
The hardest part is to actually insist that Rich sit and do the 5 minutes of massage.  I even bookmarked it on his chromebook so that he can watch and follow along when I am not home.

He did it when I insisted on it yesterday morning, but then brushed it off last night.

Of course he is feeling some extreme fatigue right now and that could have a lot to do with both the low blood pressure and the lymph nodes not properly draining.

I think the biggest problem he is having is that he thought when he was done with chemo and radiation...and things would go back to normal.

Recovery from HNC can take a long time.  With some of his other health issues, it may be a bit of a struggle and I don't think he is mentally handling it very well at this point.

Tuesday we see Dr. Rahim, his oncologist and perhaps we can address these issues.  

So we wait until then.

One Month Follow Up!

Today we have the one month follow up with the Radiologist Oncologist, Dr. Witek.

We skipped the two week follow up as Rich was doing well.
Swallowing is still painful to him and he still takes a pain med in the morning to help with that.

I think we can say goodbye to that soon enough.
Eating bread is still difficult as the saliva glands are not producing like they once did.
We don't know if that will all come back or not.

Last night we ate steak, sliced and fried potatoes, and salads.  A very normal meal.  This was something I never thought would happen again [in the third week of treatment].  I think Rich is healing well and actually getting back into the swing of things much faster than anyone imagined.

He has always been determined that 'this' was something he would conquer and I think that attitude helped him greatly.

What happens next?  I guess we wait for the PET scan to see if 'all' of the cancer was eradicated and move on from there.

16 days after

Today we are 16 days out of treatment.

Rich is doing better, he still tries to do 'too much' and push the limit, but that is in his nature right now.
He feels that he has fallen behind and lost time to the treatment.

He saw Dr. D, the dentist today and had his teeth and mouth cleaned.  Dr. D said things looked very good in 'there'.
And Dr. D will be making some temporary teeth to fill in the ones that were taken before radiation/chemo treatments. The permanent ones will take longer to make than 30 days.

Rich is pretty excited to 'get' some teeth back!
Watch out world, he will be chasing after steak again!

His throat is still very painful but compared to some cases, I guess he is doing quite well and healing quite fast.
It seems like a miracle ... we don't have an appointment now for nearly a week and a half!

I feel like I could drive to the VA hospital with my eyes closed.  
Total mileage for driving back and forth for treatments and for other appointments since April 28th?

6, 250 miles.
Whew.

I return to work at midnight tonight.
So things are returning to normal, something I wasn't sure would happen at the end of April.

So far, so good.

Appointments & Follow Ups

Finally the appointments and follow ups are slowing down.  As we get away from the last day of radiation, our appointments start to stretch out further.

The speech folks gave us some interesting information, they told Rich that he had to continue to do his swallowing exercises for the rest of his life.
Radiation stiffens the inner workings of the throat. It is called fibrosis of the throat.
We learn something every day don't we?

The throat still burns but the eating and swallowing are improving.

Rich's big concern was his lack of energy and stamina.

Dr. Rahim reminded Rich that he had been 'de-conditioned' by the weeks of radiation and chemotherapy and the stays in the hospital.  COPD and this hot humid weather made re-conditioning a slower process.  I like Dr. Rahim, he is a thoughtful caring person and doctor.
He has a wonderful smile and never comes off presumptuous.

We won't see him until August now!  Two months before we have any follow up of course if there are any questions or problems we are free to call.

I am happy to say he is slowly but surely coming around to feeling more like himself.

I'm doing a bit better too. I still lay awake and worry about him at night.  The TIA and the Anapylatic Shock still play on an endless reel inside my head.

Staying busy helps.  
I will be returning to work on July 4th and I think that first weekend will give us both an idea as to how much better he is feeling.

I am still the chore-master. And I still do some things for him that he used to do for himself.
All in all, that is about it to report.

He has to give himself time to get back into condition. My cautious worry is how does his other health issues factor into healing?

I guess we shall see.