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What cancer patients, their families, and caregivers need to know about COVID-19.

YOU are making a difference!

drookID
Posts: 20
Joined: May 2010

I joined this discussion board over a month ago, and although I’ve only posted once, I log on almost every day to read the threads. It’s been so therapeutic to me. I want to tell you all that you are all making such a difference in people's lives by being a part of this site. It’s so comforting to see the support, advice, information, humor, and even heartache. I’ve learned so much from this site…it’s helped me to know what to ask my mom/dad, how they might be feeling about things, and what “mets” are :-). You should all know that you’re providing encouragement, reassurance, and comfort to many, even when you don't know we're reading. It was this board that convinced me to encourage my dad to keep looking for options.

Dad’s got an appointment at Huntsman Cancer Institute on Monday the 12th! It’s funny…when I found out dad had an appointment at Huntsman, I first called my husband to share the news. Then I immediately thought “I’m going to post this on CSN, because they’ll all understand how excited and hopeful I am!”

I’m really scared/hurting for my dad lately and am putting out a plea for everyone to keep their fingers crossed and/or say a little prayer that Huntsman has something that will help. We know that a cure might not be possible, but we’re hoping for even something that will allow him to continue to live longer and not feel worse, or maybe even feel a little better.

I’m in my 30’s and live about 3 hours away from my parents. I have a family of my own (2 teenagers…yikes), and work out of state 4 days a week. Therefore, I haven’t really been involved in the day to day business of dad’s illness. To be real honest, my parents have been “shielding” us from all the details and how serious things really are. However, over the last month things have become pretty grim (I overheard a doctor say something and then made my mom tell me EVERYTHING).

My dad was diagnosed with colorectal cancer in 2003. He had chemo/radiation followed by surgery (installing colostomy) in March of 2004. That was followed by additional treatment (he’s had so many rounds of chemo and radiation, I can’t keep track). A later scan indicated mets in the lungs. At least one was inoperable because of the location. More treatment and a couple more surgeries (including the removal of a full lobe of his lungs). An additional tumor was found in his pelvic area, near the hip. More treatment……more treatment.........more treatment. This winter, he took a fall that broke his hip, which had been weakened by the tumor. He had been in pain before, so he didn’t even know it was broken until about 2 months later when he didn’t feel better! Somewhere between diagnosis and now there were a couple serious bouts with pneumonia, a blood clot, neuropathy and other symptoms caused by the treatment used to save his life. He has lost feeling in his right leg and has difficulty walking. Needless to say, he's had to deal with one thing after another, with very little down time, since diagnosis. Last month he was admitted to the hospital for a bowel obstruction and pain he couldn’t get on top of. While treating that, they also found that one of his kidneys was not functioning well because the pelvic tumor was surrounding the “connector”. His doctor said that there wasn’t much they could do for him and put him in contact with hospice. They said he "might be around for another year". Hearing this felt like getting kicked in the stomach. It was discouraging that the doctors they had so much faith and trust in were throwing in the towel. Although it was always in the back of my mind, it was the first time I truly felt like he might not beat this. We all took a couple days to absorb this and dad decided he wasn’t ready to quit.

He met again with the local doctor last week and asked if there were any other options, and if they would refer him for another opinion. We live in Idaho, so there isn’t a local NCI/NCCN treatment center. I don’t know that treatment would have been any different had we searched for a different treatment center/doctor sooner. They have been VERY aggressive in their treatment up until this point. After researching, they’ve decided to pursue Huntsman (in Utah). First of all, they were so friendly and welcoming when I talked to them. I called quite a few different places and they were way above the rest in making me feel positive. Secondly, we’ll be driving to the visit, so it is the most practical place. Third, I’ve read some really positive things about them and loved their “education” section on their website. So, I’m really hopeful things are looking up.

Anyway...that's "my" story. I am so glad I have a place to share it. This website truly is a godsend.

-Danialle

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hello, and welcome to the board. I am so glad you have found information and support here. I do hope and pray that your dad will get some additional options at Huntsman and that you will find doctors willing to keep at it- especially doctors that will think past the "year" that the first doctor told your dad he had. As you've found from this board, there's variety in how people respond to treatment. Not everyone makes it, but there are most definitely people here who have been living with cancer for several years. It will be three years in August for me of having stage 4 cancer with mets in liver and lungs, and there are several people here who have been going twice that time or even more.
I happen to know someone at my church who had stage 4 rectal cancer and also was diagnosed with breast cancer and had a mascectomy and did chemo and radiation for that, in addition to the treatment for the rectal cancer. She has now been cancer free for three years! Although it may be more the exception, it definitely does happen!
Keep the positive attitude for your dad & share that info w/ him.

Blessings to you, your dad, mom, and whole family.

Lisa

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

It sounds like things are starting to look up and that your father is a fighter! That's a good thing, and he is lucky to have you to help advocate for him! As you have read on this site, if he's still ready to fight, there are people out there ready to help him with the fight! Sometimes, it just gets beyond the scope and skill of those who have been in our battle up to a certain point and it's time to call in the big guns! Good luck with Huntsman and keep us posted, please!
mary

sheri22
Posts: 278
Joined: Jan 2009

Dannialle

I am glad things are looking better for your dad now.I just went thru something like he is going thru a few weeks ago. Thank God my DR stayed aggressive and refered me to
cleveland clinic. You are right this is a great site it has helped me a lot espiccally when I found out I was in stage IV This site gave me hope anyways take care I will keep your dad in my prayers.

Sheri22

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

Wow your dad really sounds tough, what a fighter! I hope the new Drs are able to find a great attack plan for your dad. I know how hard it is to be far away from a sick parent, it makes you feel so helpless or worse yet feel guilty. Try not to let that get to you, I pray your dad does well at this new place. Hang in there.

drookID
Posts: 20
Joined: May 2010

Helpless is the perfect word to describe it. My 17 y/o son is living with them for the summer and I'm just so grateful he is able to be there and help them. He's been awesome: helping around the house, lifting the heavy stuff, and even staying up all night to play Wii with grandpa when he can't sleep. It makes me feel a little less helpless because I know he's there.

Every day I'm amazed at how tough dad is. As I read through all of these threads I am constantly in awe of everyone's strenth. I have so much respect for everyone who's fighting this, and those that are walking the path with them. Makes me think twice before complaining about a headache or a stubbed toe!

I really appreciate your message.

- Danialle

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

My two oncologists come from Huntsman's clinic. One still is an adjunct professor at the University of Utah teaching oncology. Very good oncologists I have. I grew up near Idaho Falls, if you know where that is. My oncologists live in Rexburg which is only about 8 miles from where I currently live, but I know that they have patients coming from as far away as Soda Springs, Pocatello, Blackfoot, Arco and Montpelier -- Yes, they are that good!

I'm truly inspired by your dads will to live. We aren't stamped with an expiration date. I don't plan to expire until way into my 90's. I'm pretty stingy that way. If you want to talk, please PM me. There probably isn't anything I can tell you that you don't know. :)

Love and Hugs,

Holly

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I hope that everything goes well for your family during this time and I knew that there were angels watching over us in here...I just didn't think that they would post... :)..Love and Hope to all of you......Buzz

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Danialle,

First of all, welcome to this board. I was like you and read so many posts before I decided to join in the discussion. I hope you find it as great as I do for support. I am so sorry about your Dad. You are about my daughter's age and know she worries so much about her Dad, too. I have heard wonderful things about Huntsman. I am sure if there are options, they will offer them. I wish you all the very best and will keep you and your family in my prayers.

Priscilla

drookID
Posts: 20
Joined: May 2010

I really thought it would be a little less painful to see my parents' health decline the older I got, and the older my parents got. But I'm coming to realize that isn't the case. I've only seen my dad in tears a couple times in my life and when he broke down recently, it tore my heart out. I worry about him constantly and can't count the number of times I have cried the last month...especially on Father's Day. It makes me feel like I'm 10 again!

I'm really hopeful Huntsman will have some options, or trials, to offer him. I know that I feel relieved that if nothing else "we" are not giving up yet.

Thanks for the wishes and prayers.

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Danialle, Welcome. I am guessing that I am about your Dad's age, as I have kids your age. I can tell you that the best feeling in the world is having one of my kids with me at an appt. or treatment day! The both live hours away (one out of state), but I feel so supported by them. I consider that such a gift. You are being a gift to your Dad, don't quit! Also, don't beat yourself up because you haven't been as involved as you think you should have been. It sounds like that is what your Dad wanted. Honor him with that! I encourage him to keep fighting and be willing to try new things. I am in trials right now and am encouraged by my new onc. at UCSF. I heard that Huntsman is connected with UCSF too. I believe they do trials at Huntsman too. You are in my thoughts and prayers. Jean

drookID
Posts: 20
Joined: May 2010

We've actually had some really fun times through all this. His first round of chemo I had lunch with them each week while he was being infused. Sometimes, we had to remind each other to keep it down we were laughing so hard. After one round of radiation, we planned out the tattoo he would get to "connect the dots".

I appreciate your comment about honoring his wishes regarding my involvment in his treatment. It made me ask myself if I was feeling guilty, which I hadn't really considered. Somewhere in my mind some guilt was lingering. I'm going to work on convincing myself that I played the part he needed me to at the time! I am glad that I have been researching the last couple months and found more information and then used it to convince him to seek other options.

I actually talked to UCSF. I work in SF during the week and thought it would be a great option if he (or mom) needed to be down there for more than a day or two at a time. However, insurance and travel time/distance made it less appealing. Dad can't ride in the car for more than 6-7 hours a day, and public transportation is totally out. Plus...there's no where to park near my hotel :-).

Thanks for the welcome and prayers.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Welcome to the board! though I am sorry that we have to meet here, and glad that you found us. Your dad has been through a lot and he's fortunate to have a daughter as involved with his and your mom's well being. There are a couple of us on the board that go to the Huntsman. I live in central WY and traveled there (about 5 hrs) for both my surgeries and travel for follow-up scans. I have a local oncologist in Casper (2.5 hrs) and did radiation and chemo locally (for living in WY:-). I was dx stage 4 rectal in 2008. You are welcome to PM me if you have any questions about the Huntsman.

all the best, Leslie

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