Cancer Survivors Network

First off let me welcome you to this site, How sick will your father get well i don't want to scare you but he will get very sick, especially with Chemo, my husband was only 45 years old and diagnosed on April Fools day, to make a long story short, he was diagnosed and we immediately started chemo, the first one was not too bad but after that they continued to get worse, the appetites change, they break out with mouth sores, they cant eat and they get very nauseated and sometimes throw up, along with sitting on the pot, as a caregiver myself, I took FMLA for 6 weeks while going through surgery but if you live far away you would need to take FMLA, but that is only good for 12 weeks, and this could be an ongoing thing, they will always need your help. Have you thought about getting a Home Health nurse? You asked will they need help? In my opinion yes, especially after what I saw my husband go through and he was 45 I can only imagine what your parents are going to face. Yes you might ask yourself, will my brother and sister take care of them and help them, cook for them run errands dr appts, and etc. or would it just be beneficial for you to help them personally. You didn't say if you were married or not, so I am going to assume you are not, if you are not then would it be easier for you to care for them or your siblings? That is a choice you will have to make. I just know what I had to go through with my husband at a young age. I do want to ask just because of his lung condition why cant they do surgery, my husband has been or was a smoker for 25 years, along with drinking beer, and he had a full esophojectomy, on July 23 of this year, yes its not easy but he is hanging in there. I go to every doctors appt with him, as i want to know everything that happened or is going to happen, so just being a wife is got a lot of responsibilities not only as a wife but also as a caregiver. For now, I am able to work 40 hours a week but I do use my FMLA intermittently as needed. Your dad will have a hard time swallowing and will eventually either have to have a feeding tube? But each person is different.

I have learned so much by signing on to this site, when I first arrived on i was a child in diapers and scared of the dark, some things I didn't want to hear and some things I did. But as my saying always go PULL UP YOUR BIG GIRL PANTIES, and keep moving on.

Remember this you only have one set of parents, and they won't always be around, but there is many times you can find another job, when either they are better and able to care for theirself or when you think its time to do other things, If it was me and my parents were living, and was diagnosed with this ugly disease we call CANCER I would quit my job in a heartbeat and take care of them.

there is this to always remember to, Where there is HOPE there is GOD, where there is GOD there is FAITH, and where there is FAITH there is LOVE>

If I can help please let me know.

Lori aka MOE

Dear Sam:

No offense, but I am puzzled as to why you have now “covered” your face. We are not accustomed to that on this site. It makes me wonder if you are despondent because the facial expression isn’t too happy. Nevertheless, you can freely express yourself. We are all “big boys” here and you’re not alone if you sometimes are downcast. We all experience periods of our life that we sure wish we didn’t have to face. But “Lori” of “Moe and Papa” fame, uses an expression “Big Boy Underwear” which means, you gotta’ do what you gotta’ do no matter how much it hurts. You can’t go around it, you can’t go under it, you gotta’ go THROUGH the door. That’s pretty much what it means. So perhaps you need a pair shipped to you early on. Personally, we liked your "first face"!

Okay, now to what is a real problem—that of your Mother and Father dealing with cancers of their own simultaneously. The doctors were correct. If your Dad undergoes chemotherapy and/or radiation, he may very well not be able to continue to drive your mother to the places where she needs treatment. He may experience severe reactions to his therapy depending on the drug he takes.

On the other hand he may only have mild effects—no one will know until that day. I will say that chemo has a cumulative effect. He may not feel too badly the first or second week, but in time, if he is going to have any side effects, they will definitely begin to take a toll. We always say, if one can make it through the chemo pre-op, they can “look forward” to having an operation. So how your Dad will feel cannot be determined at this time. I felt fine with only a few minor changes, such as sweats, taste buds changing, and a temp. of 103 for a couple of days. I didn't even lose my hair or my energy. I had chemo and radiation of 5 weeks duration.

Regarding possible help -- There are home health agencies that will make workers available on less than a 40-hr. week. I suggest you contact them and see if you can arrange for someone to come on an “on-call” basis.

Also some agencies provide both services to take care of people that are sick, as well as take care of people who need assistance with shopping, house cleaning, etc. They often require a minimum number of hours per week. It might be that your mother and father feel well enough that they do not need “nursing services”, but do need help with grocery shopping, house cleaning, and doctor visits. etc. You could arrange the doctor’s visits to be on the day your Mom also needs housecleaning. That way you would have someone there who could come in early and clean until time to take either parent to the doctor.

If the parents are well enough to be left alone at the doctor’s office, the assistant could make a trip to the grocery store and pick up supplies while your parents are in the doctor’s office. There is usually plenty of “wait” time in the doctor’s office. After all, the person will be paid by the hour. I suggest that would be preferable over quitting your job. And could not your brother and sister take turns with driving if need be. Usually one knows well in advance the dates of their appointments so that should pose no problem. Leave time could be used if necessary.

With unemployment now at 10.2% and expecting to rise to 13%, unless you have a skill that is highly desirable, I think it ill advised to immediately consider being “unemployed”. Just how much assistance your parents will need cannot be determined ahead of time. You will have to adjust to their needs, day by day. Hopefully, they will not be totally unable to care for themselves during these treatments. You will just have to cross that bridge when you come to it.

Your mother and/or father will definitely need some assistance when they have an operation. So I would suggest you save your Family and Medical Leave time till things become more critical. It is always wise to think ahead. I always like to have a “game plan” in case things do become difficult.

Your siblings should definitely arrange to be in on the care giving, if at all possible. Also, how do your parents feel about your coming to live with them? Would they consider that as an intrusion into their privacy? My parents are deceased, but if they were alive, that would be the last thing they desired. It seems the older people become, the more determined they are to “have it their way”. Would you be a “help” or a “hindrance” in that regard? And since your brother and sister live in the same town as your parent, I hardly think it your duty to shoulder the entire task of caregiver. It is commendable that you are willing to drop everything to help them, but you have a life to consider as well.

There is the possibility that your Dad would have minimum side effects and that he would be able to continue to be a “rock” to your Mom. He may not want to abrogate that role to you. I find that most often the patients do not want to change anything they have been doing and try to carry on the same schedule they always did. At least that is their desire. Have you discussed this with your Dad? Whose idea is it for you to consider quitting your job and moving in with them? And then, if they both survive, where will you go when they no longer need you? Would you continue to live there? Would it be rent free? Would your brother and sister resent that arrangement? We’re just talking “frank” here Sam. Have you considered all these possibilities?

Now I have assumed that you are not “rolling in dough”, but maybe you are. In that case, put in your notice and fulfill whatever your heart is telling you to do.

You ask how sick will they be? That is something no one can answer. Each person has different responses. It depends too on their condition of health going into pre-op chemo and/or radiation. Like I say, I had minimal side effects that were in no way debilitating. I drove everywhere, continued to do everything I had always done, had no decrease in appetite, and didn’t even know I was sick until the doctor told me I had Esophageal Cancer Stage III. The only symptom I exhibited was a small hiccup each time I would start to eat. It became so annoying to Loretta that she insisted we see a doctor. I am glad I did. We were floored when we learned that I had cancer.

If you have read any of my postings, your Dad’s schedule will go something like this. There will be doctor’s appointments, oncologist’s appointments, radiology appointments, PetScans, CatScans, Endoscopic Ultra Sound, etc. If the chemo is to be administered intravenously through a port, that will require an outpatient visit a few days prior to the beginning of the therapy. The port will be routinely flushed by a physician once a month. My doctor preferred to leave my port in for 8 months just in case there was a need for post-op treatments. Thank God it was not needed, but still had to be flushed. That was no problem, but I did have to go to the doctor to have it done. That is the preferred method rather than making daily trips to the Oncologist to sit in a recliner for hours with a steady drip. Often patients have to drive to the office 5 days a week for several weeks to be hooked up to get their treatments. You would be wise to suggest to your Dad’s doctor that this is the way you would like to have the treatments. This will save oh so much needless travel time. Moreover I like the fact that there was no break in the intravenous applications. Cancer cells multiply rapidly and the more chemicals given more quickly give the cells less time to multiply.

I think your last thought is your best one. Hire a helper. The doctors and nurses are certainly familiar with home nursing services. My only advice there would be to check them out thoroughly. Do not have someone in your parent’s home who has not had a thorough background check and bonded. Some companies do not screen their employees, as they should. Loretta’s mom has had to have help to care for her invalid daughter who still lives at home. Believe me, she could write a book about the lousy care she has received. She has had workers come late, leave early, or not come at all. They have stolen food, objects, and money. They have failed to show and have not called to say they cannot make it into work. Talk about fraud and abuse? Her mom is afraid to switch for fear the next “helper” will be worse than the last. So that is a “big big big” warning. There are reputable firms and make sure you get one.

One other thing Sam. As far as your Dad’s lung condition goes, how long ago did he quit smoking? Has your Dad had a second opinion regarding the fact that this doctor says “no surgery is possible? Everyone with EC wants surgery if at all possible. Chemo is not a be-all end-all drug. It doesn’t “fix everything”. Even though my last PetScan revealed that the Cancer had been totally eradicated by the 5-FU and Carboplatin, I knew from the start that I would be having my Esophagus removed.

Furthermore, I would seek out a surgeon who could perform the laparoscopic procedure. However, I wouldn’t want your Dad to be a guinea pig either. Some doctors have done hundreds, some have only done a few. I would shy away from “beginners”.

You indicate that your Dad will begin chemo by the 22nd of November. What testing has he already had administered? What is his stage of cancer? ‘’

Here is a website devoted to helping find a home care or hospice facility. It appears you can key in your city and pinpoint facilities that operate in the area where your Mom & Dad reside.

http://www.nahcagencylocator.com/

And as I said before, a local hospital in the town where your parents live will have a listing of home health care agencies affiliated with their hospital. From there it will be up to you to check references.

This is all the advice I can give. Perhaps it helps you to put your priorities in some order. Right now they are “up in the air”. It is admirable that you want to be in a position to be there for them. They should be appreciative of that, however, they have their own separate lives. Sometimes one’s best intentions and offers of help go “unwanted” by those who need the help. Sometimes people just plainly “shut others out”. That makes everyone sad who would like to be of help and their kindnesses are rejected.

Just keep in mind that there is life after Esophageal Cancer and there is life after Breast Cancer. Let your parents know you wish to help, and ask what you can do now that will mean the most to them. Most likely the answer is not going to be “quit your job and come live with us”.

And remember along with the “Big Boy Underwear” that we men must wear, comes the motivation by “Kitten”, our role model, who likes to remind us “Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain! So check your shoe closet and try to find a smile. Your Mom and Dad could well live to a ripe old age. Take this one day at a time. Do not let fear rule the day. We are all in the same boat. We do lift one another up in prayer. There have been a lot of success stories on this site. They were hard fought, but by the grace of God, they were winners in the end!

Keep Hope Alive Sam,

William W. Marshall
AKA “William66”
Virginia Beach, VA 23464

Update Feb 14, 2010

Sorry if these posts go out of order--but i just intended to give an update in case anyone takes a look here.

It's about 6 months after both my mom and dad were diagnosed with cancer. Mom: breast cancer, dad: cancer of the esophagus. When I posted my first message, I was deeply stressed and frightened about things. Now, things *seem* a little better. But we've still a ways to go.

My mom had a lumpectomy, and is now over halfway done with her chemo treatments. She is weak and tired, has good days and bad days--but overall is doing ok. She'll finish her chemo treatments around April--then, we expect, she'll have radiation treatments. We're optimistic.

Dad just had a procedure done wherein they went down his throat and removed some cancerous tissue. He didn't have any large tumors, and his cancer seems to be confined to a small part of his inner esophagus. There was debate for many months about which procedure to do with him--and even if he actually had cancer or not. In the end, doctors agreed the markings in his esophagus were cancer, and they decided on the "down the throat" procedure rather than "real" surgery because he has some other underlying health problems. He is supposed to go back in 6 weeks and they're going to go down again, possible to freeze any remaining cancerous tissue. We're optimistic about my father as well.

The only bad things right now are financial issues, but I won't go into all that.

My dad has been taking care of my mother through all of this--through her chemo. And luckily, he hasn't been out of commission much--and we've avoided them both having chemo/radiation/surgery at the same time.

anyways . . . more later . . . just providing the latest info.

-sam