I can't believe I made it this far!

Missy3

Wow what a nightmare of a journey have I been on.

I think last time I was on the forum I was in agony with pain and radiation burns.  Not to mention the fatigue had me pretty much bedridden.  I did finally get the pain under control which helped tremendously.

I have also completed my radiation three weeks ago today.  It has taken this long to come to a place that I could come on here and catch up on whats been happening.   Since I was last here I have been to the ER once for that pesky gallbladder issue again and dehydration and a week later with nuetropenic fever.  I was in protective isolation for several days until my counts came up .  I also received 2 units of blood for anemia.  I was so weak during this hospitalization that I dont remember much.    I have to say it was becoming a very low point in this journey emotionally. 

But I did finally make it home for a week at which time I fell down the stairs and landed on my pelvis on the concrete bottom stair.  So back to the ER for more xrays which thankfully did not show any fractures as I know the higher risk following radiation.  So I had that added pain for several days in addition to those terrible radiation burns.

But, hopefully I have started to level out with my labs and bloodwork which are now back in the normal range.  The burns have rapidly healed.  I do have burning around the vaginal and anal area which is to be expected.

My last visit this past thursday with the rad/onc doctor ended with him telling me that he still sees the cancer on visual exam.  The plan is to have me go back to the colorectal surgeon for an anoscope end of December to have a look and make plans from there.  I am still foggy what the procedure will be and I get the feeling that it will "depend" on if the tumor was responsive to the therapy where we go next.

 

My biggest issue now of course is the fatigue.  But, even more concerning is the fact that I have zero appitite.  I am not nauseated unless I force myself to eat the wrong foods.  I just can't eat.  I have lost 24 pounds with no end in site.  I had to resign myself to veiwing food as medicine.  I make myself eat what I can.  I drink Boost twice a day even though it gives me diarreha.  I plan to at least stop the weight loss.  Any ideas here on how to stimulate a burnt out appitite? I have never had a problem like this.  

Thank you all! Could not have made it this far without your wonderful advice!

 

 

 

Ouch_Ouch_Ouch

Poor Baby!

Good golly!

With the burning, I'm sure that you weren't able to cooperate as much as you would want to on that exam. So, maybe he doesn't see what he thinks he sees. Also, the radiation and chemo effects keep on working after you stop treatment. That's why they generally wait about three months before follow-up scans and scopes. All my fingers, toes, and eyes are crossed!

I have an idea how you felt. I was hospitalized three times for neutropenic fevers. The last time, my WBC count was down to 0.2. I was in an isolation room, but with the doors open. I was told not to go out into the hall during visiting hours, so I was a night walker. Also, I was told not to fall or hit any part of my body on anything in order to avoid profuse bleeding, like I would have a choice on that! I received 2 units of whole blood and 2 more of platelets. I felt like an engorged tick. I was in so much radiation pain during this time that I was on morphine while I was in the hospital.

I lost more weight in the immediate post-treatment phase than I did during treatment. I had a negative appetite because I kept getting nauseated from the smell of nearly everything, including foods. My husband kept trying to get me to eat more, so would load the plate, a sight which would immediately turn me off. Thank goodness for Boost, Zofran, and frequent small feedings. But slowly along the way, I finally regained an appetitie, things smell normal again, and the bitter taste has gone from my mouth. I even have food cravings again. For about a month, if I didn't eat something for two hours or so, I would get extremely shaky. My cells were probably crying out for nutrients, but that, too, has gone away.

I was limp noodle weak after treatment, kept dropping things, and was in a memory fog. I went through the STAR Program at the local medical centerette, designed specifcally for cancer patients. They helped me get much stronger and I don't drop things anymore. I'm still getting therapy for the brain issue. Supposedly, my memory is intact, but my frontal lobe has some trouble retrieving it. When you're ready, see if they have a similar program near you from the STAR website, right upper corner of the homepage: http://www.oncologyrehabpartners.com/star-certifications/ The excercise helped pump up my appetite. (Plus, they would ask what I'd eaten and drunk that day, so that kept me on my toes.)

I met another woman recently who had anal cancer 6 years ago. She's my new Butt Buddy. She told me not to evaluate how I feel from day to day as the changs are too subtle. She advised that I compare how I feel now with how I felt 1-2-3 months ago. It was wise advice.

Although it may not feel like it now, you will recover and eat again with gusto. You will walk on that beach again and splash in the water. Best of all, the pain will diminish. You just have to give yourself time and lots of rest.

mp327

Missy3

OMG, I wanted to cry reading your post.  How terrible a journey you've been on.  I am so sorry! 

The first thing I want to say is regarding the exam you had when your doctor told you he still saw cancer.  As Ouch has already said, radiation can continue to work for several months after the last zap, so do not throw in the towel.  I think it's wise to have that exam in December and go from there and I hope by that time, no sign of cancer will remain.

I'm glad the burns are healing.  Mine took awhile and BM's were quite uncomfortable for awhile, as was urinating.  But finally it all subsided.  As for your fall, oh my!  I'm glad there were no fractures and I hope you've recovered fully from that.

As for the fatigue and no appetite, both will take time to resolve.  My appetite gradually returned in full force.  My one bit of advice would be to add foods back into your diet in small amounts to see how your bowels react, since you are having diarrhea issues with the Boost.  As your appetite returns, try to get enough protein to aid in healing.  If you can, add some high caloric foods to help put some weight back on.  Right now, just eat what you can.

I wish you all the best as you recover and I hope you'll keep us posted on how things are going.  My thoughts and prayers will be with you in December and I hope you'll get the all clear at that time.

Martha

Ouch_Ouch_Ouch

Etc.

mp327 is such a soothing and well-informed person. Pay her heed.

The rad/onc had me see a Registered Dietician when I kept losing weight after treatment. I also had difficulty keeping stool formed due to a long history of IBS and a short history of radiation enteritis. She gave the go-ahead to substitute high calorie foods that you may ordinarily eschew. Like butter over olive oil, hard cheese over cottage cheese, ice cream over not eating. I was thrilled when she put croissants on the list! She also stressed water-soluable fiber over insoluble fiber. (When my stools started to become soft-formed, there was so much of it that it really hurt what turned out to be fissures, so I'm trying a low residue diet for a while.)

I forgot to say what I did about the nausea caused by odors. An oncology nurse gave me the idea, as they did an aromatherapy adjunct at the hospital. A patient she had would use menthol inhalers to mask odors. But her best recommendation, in my opinion, was perppermint oil. Unfortunately, not the inexpensive flavoring you find at the grocery, but the more expensive stuff from health food stores. I kept a small dish with a perppermint oil-soaked cotton ball next to my bed/couch/whatever. I kept soaked cotton balls in a little jar in my pocketbook for the times when I had to have a port flush as the normal saline smelled dreadful for a long time, like model airplane glue. My husband gave me a woodworker's face mask that I put soaked cotton balls in when I had to take care of The Uncle alone. Without them, I couldn't have gotten closer than 20 feet to him or his soiled diapers. "Peppermint oil: it's a good thing!"

Physical therapy can help you feel more sure-footed on stairs.

Remember the infusion center. It's still there to help you even though your treatment is finished. Whenever you have trouble taking in enough fluids or feel nauseated and oral meds don't help, for an elevated temperature, or for any reason at all, go to them for IV support. My infusion center told me that some patients came daily for fluid replacement. This center always keeps a few spaces open every day for people who need to come in immediately without an appointment. They are still there to help you!