Spoonful of Sugar

I wrote in yesterday’s post ‘A Few Days in the Hospital‘, that I am in the hospital with the hopes of identifying the source of my extreme intense pain I have experienced for weeks now.  I had a great deal of interaction with different doctors yesterday and substantial amount of information was given as well as what their expectations are by this Friday.

20170416_194313 (2)The usual CT Scan took place Tuesday evening in the abdominal and pelvic area, as this is where most pain is felt.  Wednesday pain medications were changed and increased and administered via IV for a much quicker response.  The purpose is to reduce my pain level from a level 10 to a level 4.  Because of the amount of pain medications, I am taking, my bowel movements are all but nonexistent.  All possible options to start the movement, did not work and as I sit here Thursday morning writing this post, I am very uncomfortable.

We needed a movement yesterday because I am to receive an MRI today.  I will get to the reasons for the importance of this a little later.  With the increase in pain medications it was hoped the extreme pain I experience in my right groin will subside so that I may be able to straighten my right leg while lying flat on my back.  This is currently not the case, my right leg must be bent at the knee for me to lay flat on my back.  Because the MRI requires laying on my back and being very still for a substantial amount of time, it is important the legs not be bent.

Image3What are the other alternatives?  Sedation or in my case Anesthesia.  Anesthesia is not the best because of the risks involved plus the administration and recovery time necessary.  Plus, as mentioned above with no bowel movements there is a chance while under anesthesia, accidents can happen.  But, at this time the MRI is important and therefore needs to take place.

Prior to Tuesday’s CT Scan, I had to drink contrast, which as many of us know too well does not have the greatest taste.  Yesterday of the possible options to start the bowels moving, I had to drink something that once again did not have the greatest taste.

If only I has a spoonful of sugar, I am sure the medicines would have gone down in the most delightful way.

I still plan one day to catch-up on responding to comments and reading your posts.

More to come tomorrow my friends.

A Few Days in the Hospital

My friends, I am in the hospital for a few days.

There have been several events that have happened since this past weekend that I want to write about.

I am behind on writing posts.

I am behind on responding to comments.

I am behind on reading your posts.

I am in the hospital with the hopes of identifying the source of my extreme intense pain I have experienced for weeks now.

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I need relief desperately.  In the hospital, I have a pain pump and other sources available to me to help comfort me in reducing the pain.

My posts may be a little short in size and subject matter the next couple of days.

I have many things to tell you and to write about and comments I need to respond to.

Thank you for your understanding as I deal with this expected turn of events.

Have ‘A Happy Day’ everyone.

day # 5

A week ago today in my post ‘for as long as possible‘, I wrote the following –

It is Friday and today is the day I am looking for pain relief – today is the day I receive my Superior Hypogastric Nerve Block procedure.  I certainly will update you next week with how I feel and the results of this procedure.

Next Monday I start my radiation treatments; another potential for pain relief.  I have no expectations concerning the radiation, except I want something good to come from it.

From this past Monday’s post ‘Failed‘, here are some excerpts –

It is Friday evening and as usual my pain is great and I am feeling little to no difference in my pain level several hours after the procedure was done.  I take my usual amount of evening pills and prepare myself for another rough night.

Gary sees what I go through each day and he is frustrated the doctors cannot find the source of the pain.

Dr. L indicates there are no other tests and the radiation treatment that starts on Monday should help with reducing the pain.

In today’s post, I write the following –

It is Friday again and day # 5 of my radiation treatments.  20170416_194313 (2)I will take the weekend off and then start again Monday for another 5 treatments.  Yesterday after my treatment I met with my Radiation Oncologist Dr. M. to discuss the status of my treatments.  There is nothing new that I reported except that my pain continued to be extreme.  Dr. M. felt if I would receive any pain relief from the radiation he would expect it by the end of next week.  If I do not then we will re-evaluate the current plan and make possible adjustments.

Dr. M. also placed 2 referrals in at Moffitt Cancer Center for me to see other specialty groups.  One group will take over managing my medications and ensure all my specialty doctors are in sync with what is taking place with my care.  This group may also provide alternative pain management treatments such as acupuncture and physical therapy.

The other group is a supportive group that will provide services such as hospice and other needs I may require as I continue with treatments.  Gary and I recently were talking about looking at hospice services.  In yesterday’s post ‘Phone Calls‘, my good friend and fellow blogger Jodi over at THE CREATIVE LIFE IN BETWEEN wrote the following comment –

Terry. Has anyone talked to you about hospice care? I know it scares a lot of people to talk about but it is a field I work in and it is NOT a death sentence. It can give you a fuller LIFE during the journey you are on. They can provide a lot of support physically and emotionally and spiritually and help Gary and help your pain. Just something to consider. Some people use it and feel better and don’t need it any more. Others use it for many months. It is something to think about. Sending lots of love. Xo

Thank you to Jodi and other friends here that support me in so many ways.  Your support, encouragement, thoughts, prayers and hugs are always welcomed and appreciated.

Happy Weekend Everyone!

Phone Calls

A few weeks ago in my post ‘Larger Lymph Nodes‘, I wrote about having a scan and the results indicating the chemotherapy was not working.  The results also indicated the cancer in some Lymph Nodes had grown and previous Lymph Nodes that were cancer free now have cancer.

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Image Provided by: Emedicine Medscape

Prior to receiving these results, Gary and I had a discussion.  He said to me that based on my pain situation and the results of the recent scan both indicate bad news; he wanted to make some phone calls to my family.  I have no issues with this because Gary has always had some form of contact with my family since my health situation started.  My family certainly considers Gary as part of my family and truly respect and appreciate the role he is playing as a caretaker to me.

(note: since the very beginning of my journey with my cancer, all procedures and tests and treatments; all resulted in bad news.  I have not once received good news in the past 1 ½ years.  NOT ONCE)

So, the news of my cancer spreading and growing was received on a Friday; and Saturday Gary made a couple of calls.

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Image Provided by: Kyrene Foundation

He called my twin sister and he called my stepmom.  Why call these two family members?

My stepmom is the caretaker of my dad who has Parkinson’s Disease.  My dad’s health has deteriorated a great deal in the past couple of years.  At times, it is very difficult to understand his speech and because of the medications he is on; he sleeps a lot.  My stepmom has been a part of the family for over 30 years and is in contact with my siblings.  Gary knew in talking with her, she in turn would talk with my siblings.

My twin sister, being the only female sibling, has a close relationship with my mom – they live in the same city.  Gary did not want to call my mom directly as he was concerned about upsetting her, plus a sensitive matter was to be discussed and Gary felt it coming from her daughter, my twin sister would be better received from mom.

What was discussed in these phone calls?

Gary was honest and sincere and direct.  He was caring and sensitive and calm.

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Image Provided by: WordPress.com

He called these 2 people to let them know the truth concerning my current health situation.  He told them I am in a great deal of pain to the point I am using a cane to help me walk.  He told them I have lost almost 40 lbs. and my appetite is not always the best.  He told them the results of the latest scan.  He told them what is to come with regards to my future treatment and the slim possibility of positive results.  He told them more than likely we would not make it to Texas for Thanksgiving.  He told them he felt it important that they (my family) consider making plans to visit me here in Florida.

My future health situation is unknown and honestly I have nothing positive to look forward to with regards to future treatments – there are no guarantees.

for as long as possible

Last Friday’s post ‘10+‘, I wrote the following –

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Crazy Things My Brain Says – blogger

The pain in my right groin area has increased. This first started with just an occasional pain and now is constant.  This groin pain as well as my other pains is affecting my walking, sitting and standing and I have extreme difficulty sleeping at night.  I currently am experiencing many different pains daily and they are all becoming worse.

My current cancer, pain and health condition were discussed with the Radiation Oncologist Dr. M.

This past Monday’s post ‘simulation then radiation‘, I wrote the following –

You may remember from my post ‘Looking for Pain Relief‘, I mentioned my 2nd appointment with Pain Management, I will receive a Superior Hypogastric Nerve Block.

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Image Provided by: ainsworthinstitute.com

The reason for this procedure is due to the increase pain in my groin area.  This procedure is also more precise in blocking nerve pain in the pelvic region.  This procedure will be a ‘simulation’; meaning temporary, and if it seems to work, then another procedure will take place for long acting pain relief.

This first ‘simulation’ procedure is scheduled for this Friday.

My hope is between this procedure and the radiation treatment, I can finally find some relief to this incredible pain I have experienced for months now.

In today’s post, I write the following –

It is Friday and today is the day I am looking for pain relief – today is the day I receive my Superior Hypogastric Nerve Block procedure.  I certainly will update you next week with how I feel and the results of this procedure.

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Image Provided by: Emedicine Medscape

Next Monday I start my radiation treatments; another potential for pain relief.  I have no expectations concerning the radiation, except I want something good to come from it.

This past Tuesday, I had an appointment with my Oncologist Dr. L. and we discussed my future treatment once the radiation is completed.  It was decided I would begin immunotherapy with a drug called ‘Tecentriq’.  This drug has recently been approved by FDA and can provide people hope of living longer.  Though this immunotherapy treatment only has a success of extending a longer life of 10% to 15%.  This is a higher rate than some chemotherapy drugs.

This treatment uses my own immune system to help in slowing the tumor growth.  I will receive a treatment once every three weeks for four cycles upon which a scan will take place to determine if the immunotherapy is working or not.  Upon the results of the scan will determine what will take place next.  Either the immunotherapy will be working or not – time will tell.

There are always side effects to any drug, and Tecentriq is no exception.  20170416_194313 (2)Since this affecting my immune system, my normal healthy tissues and organs can be attacked as well.  I also can experience the usual side effects of nausea, loss of appetite, constipation and tiredness.

As mentioned in previous posts, I will again remind everyone.  There is no cure to my cancer and the treatments I am receiving are to extend my life for as long as possible.

Cachexia

From cancer.net

Weight Loss

Approved by the Cancer.Net Editorial Board, 09/2016

Weight loss is common among people with cancer. It is often the first noticeable sign of the disease.

As many as 40% of people report unexplained weight loss when first diagnosed with cancer. And up to 80% of people with advanced cancer experience weight loss and cachexia. Cachexia is also called wasting. Wasting is the combination of weight loss and muscle loss.

Other symptoms often accompany weight loss and wasting:

Fatigue

Weakness

Loss of energy

Inability to perform everyday tasks

I am certainly experiencing wasting.  Between the 10+ pain I experience and the pain medications, I am fatigued and weak, have no energy and honestly having issues performing everyday tasks.  My pain that has existed since my surgery in January, has increased and spread to the point I am having troubles walking.  Because of this my activity level is near zero.

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You may remember last month in my post ‘My Shell‘, I mentioned I lost 30 lbs.

I now have lost 38 lbs.

I have no muscle mass and my appetite is not good.  I do eat every 2-3 hours and the food I eat is healthy.  Occasionally, I will eat ice cream, but usually I do not eat sweets.  But there are times when I do not want to eat, but I do anyway, trust me – Gary makes sure I eat – thank you Gary.

I informed you yesterday that I will start radiation treatments Monday of next week.  Last week when I had my consultation with my Radiation Oncologist Dr. M., I asked him about my weight loss.  He responded the tumors have a high metabolism and are burning lots of calories.  I had never heard this and found it interesting.  Could he be right and is this the reason for my continued weight loss?

Upon some research, I found an interesting article ‘Why Do Cancer Patients Waste Away? Research Finds New Clues’ that includes information about Cachexia.  Click the article name link if you are interested in reading the entire article.

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Image Provided by: Quality of Life in ONCOLOGY Resource Centre

From that article, here is some important information –

A third of cancer patients die from a wasting syndrome. With new hints, researchers are closing in on what causes it and how to slow it down in order to give cancer patients more time to fight.

Half of all cancer patients suffer from a wasting syndrome called cachexia. Affected patients lose weight, including muscle, no matter how much they eat. The wasting is the immediate cause of about a third of all cancer deaths.

Those stark numbers have spurred research into what exactly causes cachexia in patients with cancer and how it might be avoided. Until recently, doctors thought cancer-associated cachexia was a sign of an energy-hungry tumor taking food from healthy cells. That view doesn’t account for the fact that small tumors can also cause wasting.

I am unsure how to process this information.  Do I have cachexia and am I wasting away?

simulation then radiation

In last Friday’s post ‘10+‘, I concluded with the following –

The pain in my right groin area has increased.  This first started with just an occasional pain and now is constant.  This groin pain as well as my other pains is affecting my walking, sitting and standing and I have extreme difficulty sleeping at night.  I currently am experiencing many different pains daily and they are all becoming worse.

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Image Provided by: Pacific Pain Medicine Consultants

My current cancer, pain and health condition were discussed with the Radiation Oncologist Dr. M.

I will update you on Monday with the results of this appointment.

Thank you everyone who sends prayers, thoughts and hugs every day – they are appreciated.

In today’s post, I write the following –

My discussion with Radiation Oncologist Dr. M. was a positive one.  He feels that I would benefit from receiving radiation.  Thursday of last week, I had an appointment for a Simulation & Treatment Planning.  The simulation involved me being placed into my “treatment position”, for which I will use for every radiation treatment.  I then had 3 small permanent ink dots called ‘tattoos” place on my treatment area that will be used to ensure the positioning and accuracy of my daily treatment.

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Image Provided by: Emedicine Medscape

I will receive between 15 to 18 radiation treatments that will begin Monday, June 12.  These treatments will be for 5 days a week with weekends off.

The possible side effects include fatigue, nausea/vomiting, diarrhea, abdominal cramping, urinary frequency, burning with urination, rectal irritation, skin irritation at the treatment site and vaginal irritation.  There are several of these I do not have to be concerned with; vaginal irritation (because I don’t have one), and burning with urination & urinary frequency (I no longer have a bladder).

My expectations are I will have little side effects; as I dealt with chemotherapy fairly well.  Radiation treatment is new to me, so I may be affected totally differently than my expectations.  The whole purpose of the radiation is to help reduce tumors and hopefully reduce pain I am experiencing.

Tomorrow, I will meet with m Oncologist Dr. L. to discuss my future treatment for my cancer.  Because the most recent chemotherapy was not working, he may want to try an immunotherapy treatment, another chemotherapy treatment or possibility a clinical trial.  My understanding is, the next treatment would not begin until after the radiation treatment is completed.

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Image Provided by: ainsworthinstitute.com

You may remember from my post ‘Looking for Pain Relief‘, I mentioned my 2nd appointment with Pain Management, I will receive a Superior Hypogastric Nerve Block.  The reason for this procedure is due to the increase pain in my groin area.  This procedure is also more precise in blocking nerve pain in the pelvic region.  This procedure will be a ‘simulation’; meaning temporary, and if it seems to work, then another procedure will take place for long acting pain relief.

This first ‘simulation’ procedure is scheduled for this Friday.

My hope is between this procedure and the radiation treatment, I can finally find some relief to this incredible pain I have experienced for months now.

10+

From last Friday’s post ‘Looking for Pain Relief‘, here are some excerpts –

This past Monday before the Facet Injection procedure took place I spoke with Dr. P.  We discussed the changes that had taken place with regards to my body since my initial consultation with him.  Dr. P. knows I now have additional Lymph Nodes with cancer and other Lymph Nodes where the cancer has grown larger.  He is also informed by me that my pain has increased as well.

Besides my lower back pain, I also experience pain in my right groin area that has increased as the weeks have passed.  Also, my nerve pains that radiates down my legs and up my back have increased as well.  Along with this increased pain is an increase in pain medications.

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Crazy Things My Brain Says – blogger

So, Wednesday and Thursday came and went and how was my pain level?  The same as usual – a level 5 increasing in the evening to a higher level.

I am still looking for pain relief.

In today’s post, I write the following –

Last weekend my pain level was 10+ and Gary considered taking me to the emergency room.  Instead he spoke with a doctor at the Moffitt Cancer Center about what I was experiencing and the possibility of admitting me into the hospital.  The doctor felt admittance would not serve a positive purpose because of upcoming appointments in the next couple of weeks I have at Moffitt Cancer Center.  He suggested I increase my pain medication (again).  The pain medication was increased and I am managing the pain the best I can.

You may remember several weeks ago, I had an appointment with a Neurologist Dr. T. at the Moffitt Cancer Center.  Dr. T. felt my Lymph Nodes located in my lumbar region that have cancer are pressing against my genitofemoral nerve, so possibly this nerve could be the cause of some of the pain I am experiencing.  Dr. T.s impression and plan also included his feeling concerning my recent lengthy surgery in January.  He feels this also could be a cause of some pain due to pressure that was placed on my lateral femoral cutaneous nerve during the 10 ½ hour surgery.

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Image Provided by: moffitt.org

He felt radiation treatments would help reduce these tumors in my lumbar region and therefore relieve some pain.  Dr. T. referred me to a Radiation Oncologist.

This past Tuesday, I had an appointment with a Radiation Oncologist Dr. M.

The appointment started with the usual blood pressure, temperature checks and any recent updates to health, medications, etc.

I then met with a nurse, and then a physician assistance where my pain history was gathered and a physical exam took place to determine the extent of my current abilities.

The pain in my right groin area has increased.  This first started with just an occasional pain and now is constant.  This groin pain as well as my other pains is affecting my walking, sitting and standing and I have extreme difficulty sleeping at night.  I currently am experiencing many different pains daily and they are all becoming worse.

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My current cancer, pain and health condition were discussed with the Radiation Oncologist Dr. M.

I will update you on Monday with the results of this appointment.

Thank you everyone who sends prayers, thoughts and hugs every day – they are appreciated.

Larger Lymph Nodes

In last Friday’s post ‘Fluid‘, I concluded with the following –

The CAT Scan results indicate the current chemotherapy is NOT working – some Lymph Nodes previously identified as having cancer are now larger.

My life is currently fluid.

In today’s post, I begin with the following –

Monday, I had my first of two Facet Injections into my spine in hopes of relieving my pain.

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Image Provided by: Pacific Pain Medicine Consultants

I am going to give it a few days, and then I will let you know how I feel about the results of this procedure.

As mentioned in last Friday’s post, it was determined my current chemotherapy treatment is NOT working.  A CAT Scan indicated Lymph Nodes with cancer are larger now compared to the last scan.  There is no indication at this point of any cancer in my major organs; this is good news.

What are the next steps?

My Oncologist Dr. L. is out of town for a while and this is one reason for having the CAT Scan and visit last week.

My next appointment is not for a couple of weeks at which time we will determine the next steps in my cancer treatment.  We agreed to wait a couple of weeks because the first Facet Injection will have taken place as well as my consultation with a Radiation Oncologist.

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Image Provided by: moffitt.org

The appointment with the Radiation Oncologist will determine if radiation will be an available option for my widespread Lymph Node cancer.

Not only are there larger Lymph Nodes; the CAT Scan also indicated there are additional Lymph Nodes that are invaded with cancer as well.

So, what comes next; what do we do?

Oncologist Dr. L. has indicated to me there are other options available to me in the fight again my cancer.

As the weeks’ progress; procedures and appointments will take place that will help determine what these options are.

Months of pain have increased in my body and my emotions have increased in a negative way.  20170416_194313 (2)The past several weeks posts reflected my attitude; and now I have the news that chemotherapy is not working.   Each day I wake and try again.  I try to be strong – I try to be positive – I try to be optimistic.  Some days are better than others, but I keep trying.

I know there are other options.

In the weeks to come, these other options will reveal themselves.

In the meantime, each day I keep trying.

Mishaps

From my post ‘The new confidence‘, here are some excerpts –

‘….. I wrote about my struggles with having a urostomy bag on the outside of my body.  As the weeks pass I am learning to cope and accept this new reality. ‘

‘Past weeks had me hesitant in going anywhere I did not have to go because of my fear of ‘leakage’ from what is now an extension of my body – my urostomy bag.’

‘With different manufacture products tested by me; there were some trials and errors that took place and incidents that were frustrating and embarrassing.’

‘…a learning process has taken place for both Gary and myself with regards to the supplies needed and process of maintaining and replacing this new extension – my urostomy bag.’

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Image Provided by: http://www.dogingtonpost.com

In today’s post, I write the following –

The post I just mentioned I published on February 24th of this year.  My urostomy bag must be changed often.  There is a method that is followed and equipment required for maintaining my urostomy bag.  At home the maintaining is easy and usually scheduled.  But what about being in public away from home and a mishap occurs?  When I use the word mishap; I am referring to my bag leaking.  I literally have had urine draining down my leg in public.

I have had 2 major mishaps regarding my urostomy bag.  Because these mishaps can happen, Gary and I have to be prepared for them.  In the truck is a bag that contains everything needed to remove, clean, and replace my urostomy bag.  And just in case the mishap is major, I also have another bag with a change of clothes.

I wear my clothes differently now because of where my stoma is located; my urostomy bag is positioned at my waistline.  Because of this, my boxer shorts are worn high above my waist and my shorts need to be very loose and worn below my waistline.  The urostomy bag collects my urine, but also will collect gas.

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Image Provided by barkingroyalty.com

Generally, this works out the best for me while I am out and about in public.  Concerning driving, I must place a small pillow directly on my urostomy bag and the seatbelt over the pillow.  This will place less pressure on the bag resulting in less likely that is will leak.  I have confidence being out in public and the previous mentioned mishaps thankfully were taken care of without much fanfare.  My hope is these mishaps rarely occur; but when it does, I am prepared.

My blog, I have always been truthful about me and my life.  The good and bad, the ups and downs and the in-betweens.  I hide nothing here as it is important for me to be honest and write about my experience with something that many people will never understand.

I write these types of posts, because one day those that do not currently have access to this blog, will read this and will hopefully understand what I went through.