Mom entering week 5 of treatment....worried.

Oh my, I am so sorry to hear that this has hit your mom so hard. Please let us know what you learn from thse lab results and I will pray for whatever it is to be easily treated. 

We all have different stories, yet so many similar aspects with this treatment. A few weeks into treatment I had developed some complications with my ostomy. The radiation had caused my colon to prolapse (out of my body) and into the ostomy bag due to internal swelling. While an awful situation at the time, it corrected itself shortly after completeing radiation. I know this is far different from your mom, but during this time I was not able to eat or if I did it did not stay down and I was wasting away. I was admitted to the hospital then transfered temporarily to a long term care facility where I received TPN (a nutritional supplement via my port)...without that specialized nutrition, I'm not so sure I'd have made it.

I know there have been others that have received TPN for other reasons and not sure if it is something your moms doctor would consider, but its worth mentioning that you have heard of this as you have nothing to lose by asking and just may get her over this hump. 

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   Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes.

   
   

   Hang in there, and know we are thinking of you all.....

   
   

   katheryn

   
   

    

   
   

    

   
   

   
   

   
   
   
   

I'm so glad your mom is in the hospital getting the care she needs. She will get fluids, antibiotics and anti-diarrhea meds as well as pain meds. I suspect her counts got low and she got sepsis like I did at the end of treatment. I have never been that sick in my life. I could literally feel myself slipping away. I too had uncontrollable diarrhea and ended up on tincture of opium to try and control it. I literally would get myself cleaned up from a bout of diarrhea , get back in bed, and 15 minutes later I would be back in the bathroom. I was too weak to bathe for days. I also hallucinated- I heard a flock of geese and old rock and roll songs. They took me to my radiation treatments in a wheelchair. (I had been a healthy 50 yo woman).I pray your mom makes a good recovery as I did. I never had the low weight issue but the TPN sounds like a good idea if she won't eat.

Im sorry to hear about your Mom. I found Mugard helped me alot and I never got a mouth sore the second round of chemo.  The first round I could barely eat or get water down.  I was always being hydrated by IV.  I avoided fiber like the plague and found things like mashed potatoes easier to eat and not give me problems.  Everybody is different and I'll keep you in my prayers.  I am 2 years anal cancer free and grateful for that fact.  You are in the worst of the weeks, and all I can say is to just keep going and try to make it through.  It was at this point I had neutrpenic fever and ended up in the hospital.  I did alot of resting and found when the nurses applied liquid lidocane to my burns I found relief.  It was at this point I needed oxycodone but was afraid of constipation.  My biggest juggling act was to eat and not be constipated or have diarrhea.  I had high fevers and low BP, was wondering if I was going to make it, but I did. Soothing music and prayers in Hebrew helped me transcend the hell of my physical state and allow for a spiritual healing as well....  I did have a delay or "break" in my treatment.  I didnt realize most people have a "break".  I was burned so badly I requested to be wheeled in a bed to my appointments. I could walk with help but sitting was out of the question..... I never showered and didnt worry about it all I would ask is if my burns were infected and they were not.  I was also warned by my radiologist about "burn specialists", because radiation burns are a totallly different thing.. I followed my radiologists instructions to a T.  Also considered quitting and he was concerned, said I was through the worst of it, why would I quit.... so know you are getting close to turning a corner.  Hang in there!

I'm so sorry about what your mom is going through.  I'm saying prayers for her.  I'm glad your dad made the decision to take her to the hospital where she can get fluids and nutrition.  I started treatment at 100 pounds and it was an ongoing concern.  90 pounds is so thin.  Was she always thin?  Or did she lose weight due to the cancer?

hugs to you!

Jane

Hi, 

Just want to say I am thinking of you and your mom. I'm so glad she is getting the TPN and is in the hospital (well not so much for the need but glad that she is getting that level of help since there is) I'll pray that within a few days you see a boost in her energy and strength. I was at my breaking point as well and along with the TPN was on a regular schedule of pain meds that at least took the edge off. It also helped to always have a squirt bottle at hand when peeing as the urine would burn that sore radiated skin so I'd be sure to squirt with warm water at the same time to dilute it. If she is on pain meds, a daily stool softener may help as well to prevent constipation. 

I noticed that someone else mentioned soothing music and prayers....one can never have enough! My daughter brought me a sound machine so I could listen to ocean waves, or rain, and it became so relaxing that I still use it to fall asleep now (almost 7 years later)

Continue to hang in there and know that we are all with you in this, it may be virtual, but you and your mom are not alone!

katheryn

Dmarie1075 said:

Shamayim,

Shamayim,

Thank you for sharing your experience. The rough rode you traveled through this treatment, I feel my mom could have written your words herself. 

My mom is at her breaking point. She is exhausted and in much discomfort. They did start her on TPN today. I am hoping the nutrients will help boost her up. She is also strong her in faith. Thank you for the suggestion of prayer.  I so appreciate you sharing your story. 

 

Again I'm so sorry for what your Mom is experiencing and hope the TPN helps.  I had a plastic sheet under me because I regularly had accidents.  I couldnt manage to get out of bed, manage the IV and make it to the bathroom while I was in the hospital (for 7 days) I used a spray bottle with saline water to clean myself because I could not touch that area with much of anything.  I would spray it furiously while I was urinating because that was like throwing acid on top of a burn.  The PH of saline is so much more gentle on your skin than water. (my radiologist advised me to do this)  There is no way to sugar coat the last couple of weeks.  They are hard.  I was in bed pretty much non stop.  I was so sick that I had a 2 week break from treatment.  One week was while I was in the hospital, the other was at home and when I was debating on whether I could go on.   Your Mom is very lucky to have such a loving daughter and husband to care for her.  I did this mostly on my own, but it was during these weeks that friends flew in from out of town to help me, and they helped to save my life.  When you get to the point where you can't go on, just ask for heavenly help and leave it up to him and again I did it with music, as I was beyond words....  This was my truth, and after a night that was the worst, my fever of 104 started to break.  They never did find out what the cause was and I was told 50% of the time they never do.  

I cant stress enough to just keep going and at whatever pace you can handle.  These will be some of the longest weeks of your life, but eventually they will be over.  I looked at it like I had one chance to get it right and so I gave it everything I had, and kept slugging and fighting my way through it.  I worried about the 2 weeks and the statistics that showed that maybe I had lost some of the effectiveness of treatment but you also have to survive the treatment.  It is a very highwire balancing act of life and death.  All you can do is the best you can, and dont be afraid to ask if there is anything else that can be done to help.  

I wish my health problems were over but at least cancer is....(I think)   A year ago I had a massive heart attack I barely survived and was told I'd need a heart transplant.  Well, I told my Doctor that if there was a chance of recovery- it was going to be me, and I did.  So I cant stress enough to not give up no matter how bad, how hard, how hopeless, just keep trying to move forward...  My tough experiences with cancer is what laid the foundation for my recovery from my heart attack which made my cancer look easy, if you can imagine that.... !  I was in ICU being kept alive by an aorta heart pump machine and it was at that point I knew I was in very serious trouble.  The power of prayer cannot be understated.....

I know my post is long, but if it helps you, or someone else to know you are not alone in time of crisis- then that is a good thing.

Thanks for posting the update on your mom. How ironic that she finally asked to eat and now she can't! But overall she sounds like she is doing better. The break in treatment couldn't be helped, and I would try not to worry about it. I hope she feels well enough to finish treatment soon and get that behind her!