New to the site

Bill,

By now I am sure you have found that your story is all to familiar to us!  What I hope you can keep in mind on journey is that, there will be no dumb questions, and no question you can't ask.  NO secrets here.

About working, my biggest concern for you would be your exposure.  Once you start chemotherapy you will be VERY vulnerable to any infection/virus/cootie you come in contact with.  Your PICC line will also be vulnerable for the duration of your treatment.  Don't unnecessarily put yourself at risk as you will NEED all your strength for this battle.

All kids are different in how they would respond.  You know your kids well and I say give them the information they may need to understand the situation.  You could invite the older ones to join a support site, they may need to reach out on your behalf as well.  A STRONG supportive group is essential and they truly can help you with this battle.

Please know you are in all our prayers as well as your girlfriend and kids.

Joanne

Stage 2, two years from end of treatment.

Bill158 said:

Thanks everyone, I'm overwhelmed

Thanks again to everyone above--I am overwhelmed at the caring responses you all have given me.  I have been busy driving home, getting hosed by the butt docs, and driving back to work again during a blizzard here.  Finally slowed down enough that I could read everyone's notes.  My colonoscopy showed about a 1.5cm nodule at my anus that they though was neoplasm, but they didn't biopsy it--rest of scope was ok.  I checked with my rad/onc today, and I am going to get IMRT, and I am stage 3b.  My girlfriend and I sat down after having sushi last night (I was starving), and we had a talk---I told her that I knew she didn't bargain for this, and I would understand if she didn't think she could hang--she said she wasn't going anywhere, and then when I started to tell her if she changed her mind, she said she would beat me if I asked her again, and that she WASN'T GOING ANYWHERE,  so i shut up at that point.  She's awesome.  She has had two sibs that died of cancer, so she said she can handle it. 

I haven't told my family, and kids yet.  I can see where it would strengthen the family, but my 16 year old son is very sensitive, even though he acts tough, so that has got me wondering how and when to tell them--I will probably have to soon since I will have a PIC line hanging off of me next week.

Work... sounds like I may be underestimating what this is going to do to me. 

seems like time is going slow until treatment begins,...I appreciate everyone here.

bill

I'm glad your scope was negative for any findings except for the anal nodule.  Now you and your doctors know exactly what is to be dealt with.  As has been stated by many above, the treatment can be brutal for some (but not all), so you really aren't going to know how your experience will be until you're in the thick of it.  I agree with Torrence that you may want to rethink working during treatment.  As you already know, chemo will attack your immune system and make you vulnerable to bugs/infections.  As we all know, hospitals are full of such things.  I was hospitalized in January for a bowel obstruction and my biggest concern was not getting "sick" while I was an inpatient.  I hope you're in a position to take a leave if you need to.

As for girlfriends, spouses, and significant others, my husband was a rock during my treatment.  Your girlfriend sounds pretty tough too and able to handle whatever lies ahead in your journey.  You will need her support, so I'm very glad she is going to be by your side for the duration.  As for your kids, specifically your son, since you will most likely be unable to hide this from them, probably being upfront, while being as positive as possible, would be a good approach.  Again, I don't have kids, so maybe I shouldn't even comment on that. 

The bottom line is you all will get through this.  I think your knowledge as a physician will be of huge benefit to you.  I had worked in various jobs in healthcare admin over the years prior to my diagnosis, but when I heard those words "You have cancer," suddenly I felt as though I knew nothing.  I learned quickly that I had to educate myself.  However, the big thing lacking for me was a support group, such as the people on this site.  I think my journey would have been much easier had I had all of these wonderful people to communicate with and I hope you will come here as often as needed to get support--we will be here for you.  I wish you all the best as you near the beginning of treatment!   

Bill158 said:

Thanks everyone, I'm overwhelmed

Thanks again to everyone above--I am overwhelmed at the caring responses you all have given me.  I have been busy driving home, getting hosed by the butt docs, and driving back to work again during a blizzard here.  Finally slowed down enough that I could read everyone's notes.  My colonoscopy showed about a 1.5cm nodule at my anus that they though was neoplasm, but they didn't biopsy it--rest of scope was ok.  I checked with my rad/onc today, and I am going to get IMRT, and I am stage 3b.  My girlfriend and I sat down after having sushi last night (I was starving), and we had a talk---I told her that I knew she didn't bargain for this, and I would understand if she didn't think she could hang--she said she wasn't going anywhere, and then when I started to tell her if she changed her mind, she said she would beat me if I asked her again, and that she WASN'T GOING ANYWHERE,  so i shut up at that point.  She's awesome.  She has had two sibs that died of cancer, so she said she can handle it. 

I haven't told my family, and kids yet.  I can see where it would strengthen the family, but my 16 year old son is very sensitive, even though he acts tough, so that has got me wondering how and when to tell them--I will probably have to soon since I will have a PIC line hanging off of me next week.

Work... sounds like I may be underestimating what this is going to do to me. 

seems like time is going slow until treatment begins,...I appreciate everyone here.

bill

I had a pic line too .One good thing about a pic line is they take it out the day your done with your last chemo...Shirley

Bill158 said:

PIC line and update

I can't wait to get this PIC line out.  It wasn't aspirating 2 days ago, so the home health nurse had to infuse Alteplase to get it going again.  It would flush fine but you couldn't draw blood back.  I have been flushing it twice daily. 

So I finished my chemo in the first week, which wasn't too bad--had nausea for 1 day relieved with Zofran, and my mouth and tongue hurt for the next week.  I've had 10 rad treatments so far, and starting to get some signs of burns in the crack area.  Not having diarrhea yet, but BM's are painful, and there is an aching inside afterwards.  Using Calmoseptine on the skin.  So far I'm eating pretty much anything that I usualy would, except when my mouth was hurting, i stayed away from spicy, acidic, crunchy foods.  I've been working weekends and that's going fine so far.  I've noticed there isn't blood with my BM's or when i wipe now, and I used to always have some bleeding, so I'm hoping that's because whatever was bleeding is getting poisoned, or cooked!  21 more rad treatments to go, and one more round of poison.

bill

I'm glad you posted an update.  I'm impressed that you've been able to work weekends.  That's fantastic.

Sounds pretty similar to my first 2 weeks.  A little nausea and extreme fatigue from the chemo and a nasty case of thrush the following week.  Also did notice the bleeding diminish.  One of my doctors had said I would notice that and it was the radiation doing its work.  It was a little relief from the pre-treatment pain and bleeding but it was followed further through the treatment with more pain, burns, etc.  Oh, I remember that aching inside after a BM.  I think I was taking 5mg oxy as needed at that point.  After another few weeks I was on the CR 10mg oxy all the time.   

I'm now 7 months post-treatment.  Occasionally I am overcome with fatigue but it's definitely improving.  I'm also being a little more adventurous in my food choices and don't seem to be the worse for wear.  I've realized in the last month that I could use some counseling - I don't know why it took me so long to clue in to that.  

Good luck to you as treatment progresses.

Marynb said:

Bill
Hi. It sounds like your body is responding well to the treatments! That is great news. So far, so good. To prevent mouth sores, I was told to rinse with a warm salt water solution several times a day. It helped and I did not get mouth sores. You might want to try it. As a doctor, I am sure that you know enough to keep an eye on your white blood counts and avoid contact with germs if it gets too low. At a couple of points, my counts got very low and I needed the shots and was told to stay away from people, wear mask, etc.

I hope your son is doing ok with your diagnosis. I wish that I had talked more with my college aged daughter about it.

Hang in there! You are in my thoughts and prayers as you go through this.

My advice is to have no expectations one way or the other regarding how you're going to feel since the experiences run the gamut.  I was ok until week 4 but some people are ok throughout.  Your girlfriend has no reason to ditch you (although of course, that's not any of my business) but insofar as the treatments go, they can be difficult, challenging and painful and then they're over. Having lymph node mets is certainly not what you want, but if given the same set of circumstances, if you wouldn't leave her, why would she leave you?  Anyway, after treatment it seems pretty common that the external burns (that most but not everyone gets) heal pretty quickly after the radiation ends and then you deal mostly with the aftereffects of the radiation (faitgue etc) but the important thing to keep in mind is that everyone responds differently. I didn't have a PICC, I had a chest port and it was a nightmare--yet for some it's not a problem at all. Everyone is different, some people have support, some people don't, some people have awful side effects, some people don't.  My advice is to address problems when you have them, not before. Cross bridges when they're before you and don't worry about how to cross them if they're not. Above all question EVERYTHING. YOU are your own advocate. No one is going to care about the outcome as much as you will. (I'm not saying that you're not loved; I'm talking about your medical team). This is a peculiar cancer in that you don't have month after month of chemo or radiation ahead of you; it's short and then it's over. I'm not saying it's a walk in the park, but it's something you can deal with.  People do.  You can too, by putting one foot in front of the other and not worrying about tomorrow until tomorrow comes.  

mp327 said:

Hi Bill

I was glad to see your update, as I've been wondering how you were doing.  Your first week of chemo sounds a lot like mine--tired with a little nausea, controlled effectively with meds.  I had thrush for which I was prescribed Magic Mouthwash.  I'm really impressed that you are able to work weekends and I hope you can keep that up.  I'm sure your blood counts will dictate as to whether that remains a good idea or not, along with some other possible side effects.  My hope is that you will have minimal issues.  Please keep us posted.

Just wondering how you are doing

Liz

Bill158 said:

mp and liz...

mp and liz, thanks for asking--I'm doing ok, and at work tonight, working tonight and the next two nights.   I have my chemo pump in a fanny pack tonight, since it won't run out until tomorrow sometime--it was started on Tuesday because of the holiday.  My white blood cell counts have all been good so far, and the only side effects from the chemo is the metallic taste in my mouth, a little nausea, and my mouth is starting to feel sensitive again, but I have magic mouthwash if it gets real sore again.  I've had 24 radiation treatments so far and I think I have just 6 more to go, but maybe 7 due the holiday.  They started the "coned down" rad treatments last week, but I am more burned and peeling more than ever--the crease where my thigh meets the pelvis has big pieces of skin peeling off, and its pretty sore and red.  Ibuprofen does ok for that pain while I am at work, but I have used about 8 Percocet in the last 10 days for bad days usually in the morning. 

Bowel movements are so painful--never have had pain like that before.  I have just started to have diarrhea intermittently and can't tell if its related to anything I am eating, but I did find out that beans cause almost immediate cramping, massive amounts of gas, so I have avoided them--I like having beans and rice so I miss that. 

I can't wait to get rid of this PICC line, and my onc said I can take it out this weekend after my chemo pump is done. 

My energy levels have been good.  I have an occasional lazy day and the couch calls me to lay down and take naps, so I have been listening to my body and resting when I need to.  I planted my patio garden and my tomatoes, kale, peppers, peas are all doing good--have them on a drip system so they get watered when I'm out of town. 

I am very much looking forward to finishing up my treatments--my girlfriend and I are going to Puerto Rico that we have had planned since January (have a medical convention/education conference there), so I am hoping I will be all healed up by then. 

It's really good to hear from you--I'm amazed at how well you are doing this far into treatment.  Being able to work is something I could not have done.  Painful BM's--that is putting it mildly.  I'm so sorry you are having to deal with that, but I think most of us did.  Beans and any high-fiber foods are probably not your friend right now, but once you recover, hopefully, you'll be able to enjoy them again, especially since you are a gardener.  Perhaps by the time you read this you'll be rid of the pump and picc line.  With only 6 more treatments to you go, you're almost there!  The last few can be rough, but you can do this!  I'm glad you have your girlfriend to support you through this and when it's over, you both certainly deserve that trip to Puerto Rico--it's beautiful there!  Please let us know when you can how things continue to go for you after treatment is over.  As always, I wish you all the best!