Is there Light at the End of the tunnel-Part Four

Light at the End of the Path Poster by WhiteOaksPhotos

When you are a caregiver for a person who has brain cancer along with other kinds of cancer all at once, you spend a lot of time taking care of that person and you spend a lot of time doing research.  You are always trying to find ways to help, or to make things easier for both the patient and yourself.   You have people that offer to help and others that tell you that if you need anyone to talk to, just give them a call.  My family has been a blessing to both me and my husband by just being there and offering to do anything they can do to help.  

The day I asked the doctor how all of this was going to turn out, I cried for two and half solid days.  I did try talking to a neighbor who recently lost her son to cancer and at first I thought that would really help, but in my heart it made things worst.  It was nothing she did, she did what she said she would do and that was listen and help if she could.  But when you are in shock and your emotions are flip-flopping, unfortunately, there is nothing anyone can do or say to ease your pain.  I have tried joining online support groups, so I try to write out what I am feeling but that truly did not work for me... I have tried in the beginning to write post on a different site that did not help either.  For me I am just not sure what to do, so my last resort was to write on my blog about this whole experience. I am hoping for two things by writing this up, (1) I truly hope that somehow this will help others who are caregivers and (2) I hope to find some of my own answers along the way.

When you are caring for a person that has brain cancer along with other cancer (s) you can expect a lot of heartache.  You try to do everything possible to help, so you keep giving them medication to take away some of the pain.  You spend a lot of money trying to find any food or drink that they may like to help keep their energy up, but when nothing taste good or it hurts to swallow, you just give them anything liquid that they request.  You will do this regardless if it is the only thing they consume all day.  You will become that desperate for them to eat something.  At first my husband could get down protein shakes-but they became too cold and he said thick to swallow. Now I have him eating yogurt but noticed last night he would not eat the fruit.  However, he will eat frozen grapes and drink cold Gatorade. And now he craves cold fruit smoothies like Mr. Misty's (slush ice and fruit.)

All of my life I have told I am stubborn as a mull, and you know what that is never going to change.  I refuse to accept the fact that nothing else can be done for my husband except to  make him comfortable as the doctors say.  Unfortunately, this past weekend, I was forced to see things differently and that my friends has to be the worst part of this whole thing.

To Be Continued.....

Is there Light at the end of the Tunnel-Part Three

Light at the End of the Path Poster by WhiteOaksPhotos

Alright, let's face it, we are sick and tired of getting telephone calls from doctors.  When the phone rang we were actually outside and by the time I got into the house the doctor just hung up-he left a message on my answering machine that we needed to call him back as soon as possible.  So I immediately called him and heard what I never thought I would hear. The MRI results found a small spot on my husband's brain and he needs to have radiation done, which also meant another doctor. Chemo had to be placed on hold for a while.

The new radiation doctor explained to us and SHOWED us the results from the MRI.  If the "small spot" was small than I am a freaking millionaire and I promise I am NOT that! The cancer mass on my husbands brain is large.  It is large enough that unfortunately I pulled the doctor aside and asked him flat out how serious this was and he told me!  If you are ever in this position and you want to the know the truth, be careful what you ask for because you will damn well get it!

One of my main concerns was, why in the hell was this cancer not found sooner! Guess what, when you have an evasive cancer and you are going through chemo, the cancer runs and tries to hide from the chemo therefore it makes a b-line to the brain because chemo does not go to the brain.  That is what happened in my husbands case, the cancer hauled ass to the brain in that short of a time.  The radiation doctor told me that at this point, all we can do is make my husband as comfort as possible.  The doctors plan is to put my husband through 10 radiation treatments (we have 6 down and 4 to go) except now my husband is having a very hard finishing the treatments. Friday he was having such a rough day that he stressed out and could not breathe when they were setting him up for his treatment, so they had to cancel it.


To be continued.......

Is there Light at the end of the tunnel-Part Two

Light at the End of the Path Poster by WhiteOaksPhotos

After hearing the doctor say those dreadful words 'Its a Matter of Life or Death' what choice did we have but to get off our ass and do something.  The doctor in Atlanta did not pan out for us, in between scheduling, insurance screw ups, traffic and wasting time, my husband and I decided to find our own doctor.

Yes, we did a Google search and we did find another doctor who performed the operation my husband needed which was bladder removal using robotics.  Obviously today not a lot of doctors do bladder removal the old fashion way because we had a hard time finding one.  When all is said and done, weeks of times were wasted and out only thought was how much further in the bladder is the cancer spreading!

The new doctor we found was not playing any games, he said he was going to run a ton of test to make sure he knew of everything going on.  Who would have guess you could have so many different scans done! NOT to mention in the process of all of these scans we found out that my husband is allergic to contrast!  So be warned.. we did not know this until I did research online... if you have contrast injected one of the side effects could be shortness of breath and uneasy breathing.  If you have that problem, that is a sign you are having an allergic reaction to contrast, so be sure to inform your doctor of this! Oh, just a FYI after I brought this to the nurses attention; the reaction my husband had was in fact a sign he was  allergic to the contrast.

The day the scan results came in.......

Oh, happy joy, joy when we were sitting in the doctors office waiting on him, we tried really hard to not allow our minds to go places where they shouldn't go..... Once doc walked we both knew.. they found something else, damn-it!  The doctor had my husband go to several different specialist including a kidney doctor, heart doctor and cancer doctor. The doctor explained an area showed up in his chest and he needed to have it biopsied.  So hear we go again, more doctor visits, more test and guess what, cancer was showing up everywhere! When we finally got settled in with the cancer doctor there we found out that my husbands cancer has spread to five other locations.  The Cancer doctor explained that if they were to go in and start removing all of the cancerous places, it would make him feel like a butcher shop, so the plan was CHEMO!

When you hear the word CHEMO you automatically go to the thought, damn I am going to lose my hair.  This is actually true, we had to take a Chemo 101 class to teach us all of the side effects and how to handling them and the lady said when the majority of the people hear the word Chemo they automatically go to the though of losing their hair.

The plan was to do three strong sessions of chemo than have my husband examined again.  Each chemo session involves, one long dose of chemo one week, the second week a smaller dose of chemo and the third week you are off which mean no chemo injections.  We were at the cancer center for eight and half hours for the first chemo visit, four and half hours during the second chemo visit.  My husband was holding up pretty fair... until the sodium in his blood starting to drop.  When this happens, moods change, movement becomes harder, you feel disoriented, confused and very very low energy!  During the second session of the Chemo, my husband stopped being the man I knew and was becoming someone else. I brought it to the attention of the nurse and doctor and they decided my husband needed to have a MRI. Here we freaking go again, another scan which my husband was not crazy about anyway... he has developed a cast of claustrophobia so having the MRI done was not a thrill for him.  The very next day we got a telephone call from the doctor..... OMG!!!!


To be continued........

Is there light at the end of the tunnel-Part One

Light at the End of the Path Poster by WhiteOaksPhotos

For the lack of better words, what the hell!  Let's start at the beginning and see if I can make any sense of this. A few years ago, my husband was diagnosed with bladder cancer. He went through a few operations where the doctor went in and scraped the tumor from his bladder.  Along with a couple of those operations, he had to go through six weeks of TB therapy where they actually injected the tuberculosis virus into the bladder to kill the cancer cells. After the six weeks my husband had to go back into surgery for a check up and the doctor told us that he was cancer free!  What a feeling of relief and joy and any other positive emotion you could think of.

After this battle with the cancer my husband decided that we were going to live and enjoy life to the fullest. We got a motorcycle and took beautiful rides up through the mountains just riding strong and riding free.  Life was so freaking beautiful that both of us thought we were the luckiest people in the world.  We were thankful beyond belief and so grateful that often we would just sit in silent just emerging in this beautiful feeling of blissfulness. 

During our motorcycle trips and rides I wrote a lot and I also took a lot of photos.  My husband got this bright idea that he wanted to get me some very good photography equipment so I could make my dream of being a published photographer come true.  So needless to say, during our rides  I was able to capture some pretty cool photos.

June of this year (2014) my husband got a Harley Soft Tail motorcycle and decided we needed a good cruiser bike so we could take a lot of weekend trips to different locations. Not only for the beautiful rides, not only for the sense of freedom and relaxation, but also so I could do a lot of photography.  Very shortly after we got the Harley Soft Tail and only took a couple of rides, my husband started to feel week, low energy and worst he started to have blood in his urine again...in this case a sure sign the cancer was back.

By the end of June (2014) my husband was back into the hospital and the doctor went in and began to scrape his bladder again.  The surgery was taking longer this time which had me concern, when the doctor came out into the waiting room, I swear my heart dropped.  In previous operations everyone in the waiting room was given a buzzer and when the family member was out of surgery, we would get buzzed to let us know the doctor would meet us in the private room to go over the surgery with us.  Not this time, the doctor came out into the waiting room to get me and took me back to a private room.  Yes, I was freaking but I was trying so damn hard to maintain my composer. My mind was screaming STOP and tell me what in the hell in going on!  The doctor must have sensed that because before we got into the room he let me know my husband came through the operation okay.

Once we were in the private room, he told me the worst news.... the cancer had spread to the muscle of the bladder, therefore the doctor was recommending us to another doctor in Atlanta.  What this meant was my husbands bladder was going to have to be removed.  The doctor explained to us that once cancer gets into the muscle it moves quickly.  Basically, this cancer is evasive and moves fast! When the doctor called our home to inform us that he found us a doctor in Atlanta, he made it a point to tell us the urgency of this situation, he actually said the urgency was a matter of life and death!

To be continued............