iowagirl
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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.
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.
Kris….not surprised you don’t feel you have much to say. I”m surprised that you can even function at all with those hours and worry. I ‘m going with “good news” also….thinking that the tiredness is due to the fact that while Mark had physical therapy, that doesn’t necessarily mean that he is back at full strength. Checking his thyroid is a good idea also…..a big cause of tiredness like this? Anti-depressants can also cause sleepiness as well….my Sis in law sleeps much of the day even without working due to her antidepressant. My bet is on the anti-depressent. The problem is that it is a side effect of many anti-depressants. I’m sure you are aware of all of this with your background.
Take care of YOU first…and be here when you need US right now. It’s a time to give back to you for all you’ve done for the others of us on here.
Miss you….and think of you often,
Julie T.Tom, The decision to go or not is a tough one, but Ben will be in good hands if you go. IMO, I think the time away will bring you back home to Ben more refreshed. That is a win-win for both of you. If you do go….plan to go and enjoy. Take a lot of pictures to bring back and share with Ben too. It’s good to have something fun and upbeat like a wedding about which to talk.
Julie T.
Marksis, Hugs to you and my sympathy to you on the death of your brother. When you feel up to it, I’d love to hear more about your brother. First, you must grieve and heal some. When you’re ready, we’ll be here for you.
Hugs,
Julie T.Vickie, Welcome to cc.org, and all the wonderful, caring and helpful people you will find here. I’m so sorry to hear that you had a reason to find us, but this is a good place to be if you need some answers…..prayers…or a shoulder. Do you know what kind of cholangiocarcinoma you have? Glad to hear that you are headed to MD Anderson and the super docs there. I don’t know how many people will be on here over the Labor Day weekend, but I just wanted to say hi…..and let you know we’re here. I know you’ll be hearing from others.
Julie T
I celebrated tonight by going out to dinner with my husband and another couple. Had the most wonderful beef tenderloin filet I’ve had in a long time….melted in my mouth like butter…..could cut it with a fork, it was that tender.
Darlene,
Welcome to the CC boards and the most wonderful group of people you will ever have a chance to meet. I wouldn’t have gotten through this far without them.
Do you know the size of the tumor? I also had an intrahepatic tumor in my left liver lobe. It was 5 cm x 4 cm x 4 cm when my surgeon at Mayo Clinic in Rochester, MN, removed most all of the left liver lobe. There are a lot of factors though, I’ve discovered, that affect the surgeon’s ability to operate on these tumors. However, some of the top surgeons can do things that local surgeons aren’t comfortable doing or just don’t have the skill to do.
Did you get a 2nd opinion?
Where is your surgeon located….medical center?
I understand about the chemo. My tumor is gone, so I don’t have that awful pain you describe on the 5-6th day. But, all the rest…oh yeah! ….including a lot of dry heaves. Everybody is different in how they respond to the junk. Tomorrow is my LAST day of chemo if my blood work allows me to have the day 8 Gem and I believe it will happen. Then, the 3 month CT scans and waiting begin. There are no guarantees.
I know that there’s another gal on here recently who was originally told her tumor was not operable, but after chemo, and shrinkage, suddenly she was operable, had adjuvant chemo, and now is living her life as fully as she can. There aren’t guarantees, but there IS HOPE.
I will say prayers for you that the chemo has shrunk that tumor and you will hear the good word that surgery will be scheduled.
Hugs…Julie t.
Olga, My heart goes out to you and your family. You’ve been through so much already and now your family has been hit again. My prayers are with you.
Julie T.
Last born,
I was age 62 when I applied for SS and also applied for disability at the same time and was eventually approved for disability. When I reach full retirement age, then my disability amount stays the same and converts to the same amount under social security.
I was first on SS for two months and now will be bumped up for my next check this month to disability amount (about $200 + more per month). After 24 months, on disability, I am eligible for Medicare early at age 64+ However, I don’t have to take it until I reach age 65 if I don’t want to (we have an excellent medical plan that I may want to hang onto as long as possible even though it will cost some more out of pocket).
It seems to me that there is a glitch in the system….that disabled is disabled……no matter when. In my mind….it would seem that the SS payment should go up to the disability amount no matter when you are disabled. Gah…..trying to understand the government!!!!
Duke,
I have had this both ways.
First, I had day one of a round of Gem/Cis and then couldln’t do the day 8 because of blood clots and hospitalization. They treated it the same as a full round ….including the week three off and started Round 2 as if Round 1 had been completed. Both my local oncologist and the Mayo oncologist suggested doing it this way.
Just recently, I was ready for Round 6, but requested that we sit a week out and to let blood counts come back up …or hope they did, before doing the day one of Round 6 chemo. They had no problem with that,….said that it is done all the time. In addition, I had reduced dosage because of kidney issues.
I agree with Jason….shifting a day or two won’t do anything negative if that is a possibility for the time away you had planned.
Otherwise, for my part…..having just had that extra week off ….that is….a 4th week in a round instead of 3, I can tell you, it made a huge difference in how I felt and allowed my blood counts t to come back up ….especially my hemoglobin, which actually rose .7 . I needed that at that week off to reset my organs’ functioning or I probably wouldn’t have been able to do this 6th and last round. (which ends with the last infusion on Wednesday next week).
Lainy,
Most everyone lives in the Phoenix or greater Phoenix area….one lives out in the dessert somewhere..but not far. I have to get out a map to look at the addresses. We have a college friend couple, a good sized family group….and then …now you too. Really looking forward to the possibility of the trip. It’s not definite yet….just was verbalized, but after the winter we had in 2013-14, it would be good to get away for a while to some warmer area. It was minus 19 actual air temp when I was in Rochester, MN for my surgery and we drove there in a ground blizzard where we could only see about 15 feet in front of the car a lot of the way.
Oh yeah…..and get that danged, wonky port out of my chest as soon as it is reasonable and possible. My current plan is to wait after this chemo to see how well my blood counts come back up and if it requires another blood transfusion. If that’s the case, I’ll want to use the port. Otherwise, once that looks clear, then the port is coming out. I suppose that is subject to the oncologist having something else in mind, but she knows how much trouble it’s been to access and maintenance flushing every four weeks would really add to the misery and remind me each time just why it’s there.
Duke….it definitely is time to live. For me….I just couldn’t wrap my head around that idea until I got past this first battle….which has been hellish with ups and downs and curve balls. I am at the stage of feeling it just may be possible to plan some escapes from all of this in the next couple months. But, two or more things at least are looming in my way. First, I must get my kidney numbers into control…back into the normal range….to try to keep the acute renal problem from escalating to something more serious like dialysis down the road. They’ve told me that this usually goes back to normal after the chemo is over. I sure hope so….dang…I started out with better than normal kidney function. Then, there’s the edema in my legs…probably from the kidney function issues….hopefully that will resolve once the kidney function heads back to normal and dealing with my low hemoglobin. I’m hoping that things improve enough that I don’t have breathing issues when I want to be gone on a vacation or two.
Plan One: Vacation in October for genealogy and visiting brother and family.
Plan Two: Trip in winter to Arizona to visit relatives and old college friends…. and new friend and mom, Lainy. Hoping by that time,nothing new will have popped up on scans….my energy level will be really good…and I can enjoy the trip.
Duke….raising a glass to you….here’s to the future!!! Whatever it may be!
Julie T.
The Decision to go ahead with the last round of chemo:
I am sitting here at the cancer center doing the first of two infusions of Gem/Cis of round 6, the last round of my adjuvant chemo. I apologize if some of this doesn’t make sense. I have problems staying awake during much of day one chemo and often feel kind of fuzzy headed .
My blood counts were mostly better, esp the hemoglobin and platelets, so I believe it was a good thing to sit out last week….thus delaying the start of this last round. My hemoglobin rose from 9.5 (and 7..2 the weekend before) up to 10.2 and platelets were around 240, up from about 113 last week (and from 50 the weekend before). WBCs are in normal range. The kidney function is still worrisome, as it went up one tenth of a point….further from normal (1.2 to 1.3. It had been as high as 1.5 after that last round of chemo, but dropped back). But, we determined that probably happened due to Lasex for edema being raised to 40 mg from 20 mg last week. That can stress the kidneys. So, back to the 20 mg of Lasix, more water/liquids, and the dosage for both Gemzar and Cisplatin has been reduced 25% to hopefully not cause problems with my kidneys or worsen the stress on them.
I made the decision to go ahead with the chemo, even though the kidney numbers were not yet in the normal range. They had been sitting at 1.1 for most all of July and made the trend upward after the last round of chemo. That last one, along with the cumulative nature of chemo, made things worse. So, that is why the oncologist reduced the amount of both chemo drugs.
We have planned to do an extra blood draw in two days to check for serious blood count and kidney problems, to see if they appear to be developing again, in case there is anything to do to help. Then, we go back next Wednesday (if all is well on Friday) to redo the labs and see if things are okay to do the final infusion of the last round of chemo.
The last round. What a wonderful sound that has. I so hope that it will be the last round for always, but I will be content that it is the last round for now and know that i’ve done whatever I could do.
Julie T.
