October 1, 2014 at 12:06 pm #64737herculesModerator
Hello everyone, I have passed a wonderful milestone in september…nine years passed diagnosis, nine years since I first heard the word “cholangiocarcinoma”, a name that changed my life. All the doctors initially assured me it is very unlikely to be this, it is very rare, …a fraction of one percent, don’t worry. It would have hurt more than helped to worry. I just wanted tests and treatments as fast as they could come. The heck with second opinions, By the time I was on the table, I know at least five doctors looked at the medical tests and time is a major factor. My surgeon was referred to as the best by my gastrointestinal doctor. I chose to put my life in his hands. In my case it payed off. Being told you need half your liver removed is mildly upsetting news, but I felt O.K. lets get this over with. Once again it seemed to work out . My blessings have come ever since. Today I will be fishing with my adult son and enjoying another beautiful fall day. Thank you for helping so many people, PatSeptember 12, 2014 at 2:28 am #64736
Duke….dang it…now you went and did it…you made me cry…..EXCEPT….for a HUGE change….these are “good” tears. l babysat my little grandson from the time he was two months old…5 days a week…and about 9 hours a day. He and I were very close. The kids had told him I was in the hospital (when I was up at Mayo, or here with blood clots or transfusions) and when we facetimed on the i-pad, he always asked, “Are you at your home?” When I did come home, he would ask if I was at our home and he always seemed relieved when I would tell him that I was home from the hospital. For a three year old…he’s pretty empathetic….and has patted my back (when he was about 2 years old) when he seemed to recognize that I was sad about something. My greatest joy was when he started doing his running hugs to me like he used to do. I think when he did that….he seemed to accept that I was okay again. I do think my hair loss threw him for a bit though. As a young 3 year old, you wouldn’t normally think of them understanding what is going on…and of course, he doesn’t understand it all, but I am quite sure that he is aware of the deep concern over grammy and her illness the past 7+months.
And yes…..there are times they are frightfully honest…and other times….well, in his case, don’t ask him if he has to go to the bathroom….he just doesn’t want to stop to take the time.
I will definitely take the two thumbs-up and bodacious smile…..I believe that is what I gave my local oncologist too. My yippie dance would embarrass everyone, including me. I left the oncologist’s office with a big smile yesterday. Last night, my son said that my face looked more relaxed than he’s seen it in months…like the worry vanished. I can’t say that is 100% true, but today, I was well aware that I had a new outlook on things…took myself shopping and did some genealogy…..and enjoyed the day. Knowing that my blood counts were no longer in a dangerous level….and trending upward, I know it affected the way I felt otherwise.
Thanks Duke…..my family is my everything….and I hope to have many moments of joy for quite a few years. I’m planning to be on the good side of the percentages.
Julie T.September 11, 2014 at 6:35 pm #64735dukenukemMember
I’ve read frequent responses from some of the above individuals about doing their “yippee dance”. Well, that is one visual of me you don’t need – trust me on this. However, you do get a solid two thumbs-up and a bodacious smile!
Three year olds are a joy (remembering mine – no grand kids in sight). In things like this they are perfectly honest (just don’t ask who took the last cookie). I think he may understand at a very deep level what is happening and this is way of expressing his love and need for you.
Wishing you many moments of joy with your family! Treasure them.
DukeSeptember 11, 2014 at 5:12 pm #64734
How great it is to see you post in the section of the site and I’m with Lainy here on doing her yippeeing too!!! You sure have been through so much lately and I so hope that life now will be able to be enjoyed by you with your family!
GavinSeptember 11, 2014 at 6:16 am #64733marionsModerator
Julie…..some day you will look back and wonder how you managed to make it through this difficult time . For now life is on the upswing and time for renewal. Based on the regrowth of hair, eyebrows, lashes you are well on the way. Enjoy life, as all of us should.
MarionSeptember 11, 2014 at 5:15 am #64732lainyParticipant
Julie, it all sounds great! YIPPEE! The trip you want to take sound beautiful especially this time of year. ENJOY and once more YIPPEE!!September 11, 2014 at 4:11 am #64731
Two weeks ago, I finished round 6 of 4-6 rounds of Gem/Cis (as tolerated). I had a very rough round 5 that knocked my blood counts for a loop, esp platelets and hemoglobin…so I ended up with two units of packed red blood cells transfusions.
I took an extra week off between round 5 and 6, to see how well my counts might rebound before deciding to continue. They did rebound well enough to go ahead. My oncologist, however, reduced the percentage of dose by 25% so as to not have a repeat of round 5. Still, last Wednesday, my platelets were only 42….and my white blood cells were well under normal with neutrophils also very, very low.
Now, a week later, after having some breathing difficulties about 5-6 days ago, I had repeat blood labs and all the major things are in the normal or much better range. Platelets and WBC and neutrophils are all back into the normal range…low normal…but normal. Hemoglobin is at 9.2 …which is anemic….but on the uptrend.
So, during my consult today with my local oncologist, it was decided that my port will be removed….and I’m scheduled for that surgery next Monday, the 15th. It was put in weird…kind of tilted sideways and always caused a problem …and pain….to access. I am thrilled to get rid of it. It was also decided that I would not see my onc again for about a month….in early October…which will be about a month before I go to Rochester for my next 3 month scan.
I’m planning a vacation with my husband…..and will indulge one of my favorite hobbies, genealogy…and another one…hand holding with my hubby (hopefully while walking through some beautiful Michigan and Pennsylvania and Tennessee countryside.). Whatever the November scan shows…or any of the others to follow…I know I have done everything I could do (the adjuvant chemo….post surgery) to try to keep the cancer from returning. There won’t be any looking back and saying, “I should have…..”
On a personal note….my hair is almost gone on my scalp….esp on top…but new peach fuzz hair is already growing on top. My eyebrow hairs…I could count how many are left of the original ones with both hands and a couple fingers to spare. Seriously….3 hair on one side and 5 on the other. However, new little sprouts of eyebrow hairs started growing last week and are a little longer this week…and there are more than I can count with my fingers….at the inside tip of the eyebrows….and just today I noticed several new sprouts about mid eyebrow. My eyelashes…another story….most of them fell out….and no sign of any regrowth…unless what are left ARE regrowth…and just very short.
People talk about “chemo hair”, the new growth that tends to be coarser and maybe even curly. The cancer cosmetologist at the cancer center today said that the short stuff on the top of my head looked like new growth to her….but it is not coarse…it is very downy and “fuzzy” like. Wouldn’t you know….the same as the stuff I was born with…..the same hair that stood up and out every which direction. Sigh. Oh well….I will be happy with just hair if that is the case and be glad about it. I always wanted darker/thicker/and curly hair….but the new hair appears to be the med blonde color it was when I was born….same fine, thin hair. Thought I might get rewarded for all the chemo crap with at least getting some good hair back….but I guess any hair is “good” hair at this point.
Tonight at supper….I had on a ballcap with hair that is attached to the cap (very handy and fast). I’ve worn it off and on for the past month….and my little three year old grandson and I have made jokes about grammy’s moving hair…as I lift the cap up and down. We call it “silly hair”. Tonight at supper….I told him I had the silly hair on again….and I moved it up and down. He laughed at first…and then wanted me to take it off. He looked at me and very matter of factly said, “Grammy doesn’t have hair.” Well, I have a little…but no where near what he was used to seeing. There was a little nervous laughter at the table…but he and I just kept having our conversation. I’ll show him the regrowing hair from time to time…so that he sees that it will come back. At three, he doesn’t understand much, other than grammy was sick….and the doctors at the hospital took out what made her sick and now she is getting better. When I’ve told him this….as he’s been in my lap, he takes a very long, serious look at my face…and into my eyes….appearing to try to decide for himself whether I better or not. But the more we do things together like we used to do….the more he will accept that things are now okay again.
I just hope and pray that they stay that way..okay!!!! . Meanwhile, I’m enjoying every moment with that little guy….my son and his wife, husband….that I can.
Julie T.July 15, 2014 at 12:29 pm #64730
2 hours in the gym to work off a slice of Kris’s chocolate cake me thinks!!July 14, 2014 at 6:04 pm #64729
Sounds almost like I”m back in business. Chocolate raspberry cake with chocolate truffle frosting and raspberry gel filling. YUM!!! Wish I could whip up and send off all those cake orders.July 14, 2014 at 2:38 pm #64728darlaParticipant
Oh Yes!July 14, 2014 at 5:52 am #64727kris00jParticipant
Since you are taking orders… The most sinfully chocolate chocolate fudge chocolate cake you can think of here!!July 13, 2014 at 11:34 pm #64726darlaParticipant
Lisa, that sounds tasty too. Julie, I’m sure any cake that you make would be yummy.July 13, 2014 at 5:56 pm #64725
Cherry cake with almond, never tried that but sounds good!!! Carrot cake, sounds good too!
Our cherry cake at new years is like a maderia cake sponge with glace cherries in it, yum! PLus of course oatcakes with cheese, can’t beat that! Oatcakes and whisky, new years seems ages away!! Ha!!
All this talk of cake…. just as well I’ve had my tea, small pizza with tons of added dried chilli flakes on top as extra and served with pickled chillies on the side, mouths on fire still! Just what you need before the footie!July 13, 2014 at 5:46 pm #64724lisacraineParticipant
Wite cake with butter cream icing with almond extract…do you make gluten free????
LisaJuly 13, 2014 at 4:07 am #64723
Darla…..Cherry with a bit of almond sounds yummy right now. My claim to fame …at least for white cakes….was the almond flavoring I used….but cherry and almond go together wonderfully. HOwEVER……..Gavin….I’m thinking for autumn, it should be a carrot cake…..seasonal and all that. Besides…I love carrot cake…and I don’t remember the last time I made a cake for myself…and actually made a flavor that “I” wanted. They weigh a ton, but the family recipe is so moist and yummy. If I could figure out how to get one to you before it molded, I would for sure. Darla…..we just might be able to swing a cake some day….we really aren’t that far apart.
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