Tuesday, August 25, 2015

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.  

Tuesday, August 18, 2015

Follow ups and after care

Things I learned today.

Swallow/Speech Therapy.
Head and Neck Cancer patients must always do swallowing exercises and eat small meals often.  To miss the exercises or not eat a patient will run the risk of losing their ability to swallow.
This is forever.  Not just during the treatment and a while after the treatment.

Radiation damages the muscles of the head and neck.  In order to keep them working, the patient needs to work at it.  For the rest of their lives.

In the back of my mind I knew this because I'd done research at PubMed and also had been in contact with other HNC patients through a website called CancerCompass.

Rich had been doing very well until he hit a road block with his blood pressure and some stomach issues.  We had gone to the VA clinic in Baraboo and the doctor a few weeks ago had felt that the stomach/bowel issues were from a change in medication and diet.  The first line of treatment is to take away the offending medications which could cause the problem.
However, Rich was still having some pretty intense pain in his lower left quadrant [bowels] and intermittent diarrhea.  

We spoke with Dr. Rahim and Rich explained what had been going on.  
Dr. Rahim thought for a moment and then explained that Rich might have had a shock to his intestinal system when Miss Peggy was removed.  
This could have caused paralytic ileus, or a slow down of the squeezing motion [known as paristalsis] of the intestines to move digested food.  
This in turn could have caused a partial blockage of the intestines.
To confirm this, we went to X-ray and indeed a partial blockage was found.

So I/we learned that the digestive system can have a shock and get fouled up. 

Cancer and Depression.
Well these two things can go together.  One of the issues is that when you finish treatment, you figure it is over and you are going to feel much better right?
Not necessarily.

Rich had a few weeks where he did feel much better.  It was amazing, he felt alive and energetic.

Then things went a bit south.  The energy level dropped drastically.
Let me add here that at this time our weather turned very hot and very humid.  Very hot conditions are hard on anyone, let alone a cancer patient.

Recovery from HNC treatment can take a long time.  Life in many ways does not return to pre-cancer normal.

In fact you should have a mindset that life after treatment may just be your 'new' normal.  

So combine feeling terrible, with low energy, pain that you don't understand, and the inability to get things done that you want to do and...
depression sets in.

The journey through treatment is only the beginning as the road to healing is not an easy one either.

As one of the nurses told us today.

"One Day at a Time."

Friday, August 14, 2015

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.

Saturday, August 1, 2015

7 Weeks Out and Lymphedma of the throat

Things were really cruising along and Rich was feeling much better day by day. He did things like mowing pastures, mowing the yard, working on the Jeep, doing chores ... his energy nearly seemed boundless.

7 weeks out we hit a sudden snag.  Miss Peggy came out, but the doctors had given him a bit of grief for losing weight.  He told them that it had been so hot and humid that he didn't feel much like eating.

Then yesterday, after I got home from a 'graveyard' shift, he told me he was not just feeling quite up to par.  I helped with chores and then fell to sleep.

He has lymphedma~~
"Head and neck lymphedema occurs when the body is unable to transport fluid due to damage to the lymphatic system. It happens when scarring from a surgery blocks lymphatic vessels in the neck or the lymphatic system is damaged by radiation therapy."

It started creeping in slowly and has come to what I'd consider full force right now.  So far it hasn't impeded his speech or swallowing, but I do notice that he is trying to clear his throat more often.
I'm sure that his lymph nodes around his neck were damaged with radiation, another little thing that we didn't know might happen.

I'm going to look into the massage technique of moving the fluid out of below his chin.

On a second note, work has tossed me into the fray of things.  Since my first day back after 3 weeks off, I have worked 40 hrs a week and the shifts are all over the place.  I took the time happily because Rich was doing so well.

Now that I believe that Rich is feeling crappy and not eating well, it is time to put my foot down at work and tell them that I need to be taking more time to take care of my husband.

Cancer taught me that being with my husband and having quality time together is more important than most anything else.

Of course Rich is looking forward to having our 10 year old Grand daughter come for a week's visit from Wausau.  He bought a fishing license, so he can take her fishing.  He is going to teach her how to ride Fred our fantastic old mule.
He plans on taking her for rides on the 4 wheeler.  And just spending some one on one time with her.
Lily was very distraught over Rich's cancer diagnosis and this should help both her and Rich feel better.