Months not Years

In my post ‘something changes direction‘, I wrote these words –

The results of the CT Scan and MRI came back with additional bad news.

My cancer has now spread into my bones and spine as well as additional Lymph Nodes.  It was only one month ago I had scans performed and these areas were clear and displayed nothing out of the ordinary.  The doctors are amazed at how quickly my cancer has spread.

So, what comes next?

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In today’s post, I write the following –

It was about 3 weeks ago, I received the news my cancer had spread into my bones, spinal cord and additional Lymph Nodes.

Following my hospital stay, I had a visit with my Oncologist Dr. L. to discuss my options.  One option was to do nothing and the other option was Immunotherapy.  Concerning Immunotherapy; any type of positive results is only about 15% – meaning 15% of participants will receive some type of response.  The response would be the slowing down of the progression of cancer to other parts of the body and/or stopping or slowing down the growth of the cancer cells.

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So, I asked Dr. L. the question; how many years would my life be extended, if there were a positive result?  His response was that we are talking about months, not years.

It is mid-July and sometime in late August scans will take place to compare to previous ones.  What will they reveal?  Any changes?  We will find out soon enough and further decisions will be made.

Whatever those results and decisions, my time is limited to months not years.  I know this and Gary knows this as does my family.

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I will continue to write and publish posts until it comes a time I am unable to do so.

something changes direction

From my post ‘turning point‘, I concluded with the following –

Upon having my initial appointment with the Supportive Care Medicine, the main doctor, Dr. C., immediately wanted to place me in the hospital due to the extreme pain level and the lack of quality of life.

So, after waiting several hours just to be admitted that were becoming unbearable for me, finally a bed became available and the start of my 7 days would begin.

This is a turning point that Gary and I were looking for that would change the course of my treatment.

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More to come my friends in future posts to explain so much more.

From my post ‘critical point‘, I wrote the following –

Upon admittance into the hospital, the Supportive Care Medicine team of doctors wanted to change my pain medications and run scans to determine the sources of the difference pains I feel daily.

First, a CT Scan with contrast was performed with Dr. C. specifying thoracic, abdominal and pelvic areas.  As part of this CT Scan, he requested the right groin area be included.  My right groin for the past several weeks has been causing me severe pain.

Second, Dr. C. ordered a full body MRI specifically on the spine.  He wanted to determine if anything out of the ordinary regarding nerves was obvious.

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bezboleznej.ru

In today’s post, I write the following –

Dictionary.com has this definition –

turning point

noun

  1. a point at which a decisive change takes place; critical point; crisis.
  2. a point at which something changes direction, especially a high or low point on a graph.
  3. Surveying. a point temporarily located and marked in order to establish the elevation or position of a surveying instrument at a new station.

Based on my admittance into the hospital, changes to my pain medications, tests and results – there are 2 turning points.  This is turning point 2 –

The results of the CT Scan and MRI came back with additional bad news.

My cancer has now spread into my bones and spine as well as additional Lymph Nodes.  It was only one month ago I had scans performed and these areas were clear and displayed nothing out of the ordinary.  The doctors are amazed at how quickly my cancer has spread. 

So, what comes next?

Following my hospital stay I met with my Oncologist Dr. L. and we decided I would start with Immunotherapy treatment due to my cancer being wide spread.  The Immunotherapy treatment will start immediately.

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The news I received about the test results, honestly, I kind of expected.  I know my body and my body has been telling me something for a while now.

turning point

I spent the last 7 days in the hospital with doctors trying to figure out the sources of my many different pains.  Back on June 15, I had an appointment with my Radiation Oncologist Dr. M.  Once again as with my all my appointments, I express the severe pain I am feeling and the receiving of very little relief from the current pain medications I am on.  Many days I am living with a 10+ pain level.

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Let’s go back several weeks before this appointment and I am expressing my pain frustrations with my Oncologist Dr. L.  It was just 2 weeks before this time, I was walking on the outdoors track for 1 – 2 miles per day.  Now I am having to use a cane and other activities are being affected as well such as showering and dressing myself.  I also now had to give up driving; something I really enjoyed, but now with pain medications and the pain in my right hip-groin that make its way down to my knee: driving is not in my best interest.

So, in the previous weeks that came and went; more scans were taken, blood work drawn for testing, and then there were Main Management Procedures to block nerves and one more very important appointment.  After several months of Gary complaining there must be something the doctors are not seeing, and with pain level as high as it is, I should be admitted to the hospital to find out the source and to treat it.  At this point in time I currently have no quality of life and my days are filled with pain and tears.

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At this point in time, it all becomes blurring and my brain is not functioning well; mainly because of pain medications and my walking with my right leg is all but gone.

At this point in time, there finally comes a suggestion from Dr. M., to place a referral in to the ‘Supportive Care Medicine’ group.  From Moffitt Cancer Center website –

Patients may be referred to the Moffitt Supportive Care Medicine Program for consultation at any stage of cancer, including at time of diagnosis. The program works collaboratively with other health care practitioners to provide the extra layer of support that patients often need while undergoing anti-cancer treatments. While others are working to treat the disease, Supportive Care Medicine focuses its efforts on relieving the physical and emotional distress caused by the disease and assisting with planning ahead.

Upon having my initial appointment with the Supportive Care Medicine, the main doctor, Dr. C., immediately wanted to place me in the hospital due to the extreme pain level and the lack of quality of life.

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Image Provided by: moffitt.org

So, after waiting several hours just to be admitted that were becoming unbearable for me, finally a bed became available and the start of my 7 days would begin.

This is a turning point that Gary and I were looking for that would change the course of my treatment.

More to come my friends in future posts to explain so much more.

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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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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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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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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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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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.

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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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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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.

Looking for Pain Relief

My post ‘appointments and procedures‘, I wrote the following –

The Neurologist suggested I be referred to Radiation Oncology for radiation treatments to help boost the chemotherapy and reduce the tumor that is pressing against the genitofemoral nerve. The referral is in place for the consultation at the end of this month.  My hope is the radiation treatments can be worked in the schedule along with my chemotherapy treatments.  I am unsure at this time how this will be handled.

Prior to my Radiation Oncology appointment, I will have my first of two appointments for my Facet Injections.  You may remember I was also referred to Pain Management and it was suggested by them to have 2 appointments for the Facet Injections.

In today’ post, I write the following –

This past Wednesday’s post ‘Larger Lymph Nodes‘, I mentioned I was giving it a few days, and then I would let you know how I feel about the results of the first of two Facet Injections I am to receive.

The results are I feel little difference in the level of pain I am experiencing in my lower back.  Immediately after the procedure I felt some relieve; that was most likely a result of the local anesthesia.  Back home and hours later the pain was worse; I reached a 10+ pain level and my emotions took over and with the tears flowing, once again I asked God to let me die now.

I finally found one comfortable position on the recliner and received some sleep and some brief pain relief.

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Crazy Things My Brain Says – blogger

Tuesday morning, I wake with my usual pain level of 5. The pain level from the previous evening is subsided and the new day brings another normal day of pain.  The normal day of pain is because of the many medications I take to control it.  As the day progressed so did the pain level.

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 have additional Lymph Nodes with cancer and the other Lymph Nodes that have cancer are 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.

20170416_194313 (2)This past Monday, prior to the procedure Dr. P. suggested for my 2nd appointment he would perform 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.

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.

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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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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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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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.

Fluid

Last Friday, in my post ‘appointments and procedures‘, I wrote the following –

The Neurologist suggested I be referred to Radiation Oncology for radiation treatments to help boost the chemotherapy and reduce the tumor that is pressing against the genitofemoral nerve.  The referral is in place for the consultation at the end of this month.  My hope is the radiation treatments can be worked in the schedule along with my chemotherapy treatments.  I am unsure at this time how this will be handled.

Prior to my Radiation Oncology appointment, I will have my first of two appointments for my Facet Injections.  You may remember I was also referred to Pain Management and it was suggested by them to have 2 appointments for the Facet Injections.

In today’s post, I write the following –

Some posts I published in the past couple of weeks included bad days due to pain, despair, guilt, weakness, unhappiness, death and tears.  There for a while I was very down, even to a point of depression.  This period of time was short and now I am in a better place.  I remain optimistic the next couple of weeks will bring some relief in the pain that has dominated my life for months now.

UPDATE – (as of this morning)

I wrote and completed this post earlier this week and as of yesterday it was ready to be published.  I mentioned in yesterday’s post that my life is fluid and changes daily and even sometimes many times a day.

Here is a rundown of unexpected events that occurred in the past couple of days.  Tuesday night I was in so much pain, nothing was helping and I was at my lowest point and just wanted to die, even if it meant doing it myself.  No need to worry my friends, I learned years ago suicide is not an option – therefore this will never occur.

Wednesday morning, Gary calls and speaks with a nurse at Moffitt Cancer Center to discuss my pain becoming worse and what I am experiencing; he asks that my Oncologist Dr. L. be informed.  Wednesday evening, we receive a call from Dr. L. and I discuss with him my current concerns with my health and that I am at the point I just cannot continue living with this much pain.  He was informed of the increase in pain medication and of other issues my body is currently experiencing.

He is concerned about what he hears and immediately places requests for blood work, CAT Scan and appointment to see him for the next day and that I should receive a call the following day after 8:00 AM.  I responded with a sincere thank you for his call and listening to my concerns and for his prompt response to have tests and see him the next day.

Thursday morning, 7:55 AM, I receive a call from Moffitt Cancer Center for the times of my appointments for that day.  Midday we arrive and promptly the blood work and CAT Scan are completed.  (this is after I had to drink my oral contrast liquid – yummy)

Then we meet with Dr. L. to discuss some of my history and the current pain I am experiencing.  I let him know the pain has increased and my daily quality of life is poor.  A physical exam is performed and then we receive the results of the CAT Scan.

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.

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