Last Five Chemos and the Aftermath

Nov-Dec-Jan 2012/13 Chemo 

I’m sorry. I know I haven’t posted but I assure those readers who don’t know me in real life that I am still alive. Between going back to work part-time, chemo brain, and side-effects getting progressively worse I just didn’t post. ūüė¶ So again, sorry. This is a LONG catch-up post.

Nov 14, 2012 was chemo number 8.  My Facebook posts for that day-

Sitting in the lounge chair getting hooked up for session 8. Friday afternoon I will be 3/4 of the way through! Doc is letting me hold off an extra week for number 9. That set my schedule to have Thanksgiving, Em’s bday AND Christmas week fall on my good weeks. A nice little break….

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bedtime? /sigh if I’m able to head into work tomorrow I will prob be in late. WBC still low so part of my decision revolves around how typhoid ¬†*** ¬†is feeling. don’t want to sit next to a contagious entity.

That weekend I had headaches and terrible constipation problems. I had to call in the cavalry and get my sister to bring over various tortur … er … ¬†products to try.

I worked the next week and looked forward to an extra good week to reset my schedule. Plans were made to go out with Em and her friends for her birthday. Well plans made don’t necessarily turn into plans implemented. I was sick that entire week, nausea and headaches. I didn’t even babysit. I did not want to chance passing something on to the baby. So much for an extra good week. /sigh

Dec 5, 2012 was chemo number 9. Facebook post that day-

Home from number nine… have a CT scan scheduled for Tues 18th, before my next spa session on the 19th… did find out my last CEA number… still in normal range

Constipation, cold sensitivity, and neuropathy in fingers and feet. No actual bloody noses but blowing my nose I would end up with bloody kleenex. Fatigue all weekend.

I just saw that this is the time period that I was first introduced to the WunderGlo Foundation and the inestimable Gloria Borges. Just over a year later and she is gone. Excuse my language but what a fucking waste. This woman had so much to give! She gave and gave until the very end.

Facebook post from the day before my ct scan –

CT scan tomorrow. My first scan since starting chemo. My last scan, pre-chemo was clear and my cancer marker numbers are still in normal range but I am really nervous about tomorrow. Scanxiety… still waiting for the other shoe to drop….

Dec 19, 2012 was chemo number 10. Facebook post that day-

Ok, scan came back clean! Still dancing with NED 

Fatigue, fatigue, fatigue. I believe I spent the entire 5 days in bed. Bloody Kleenexes turned into huge, thumb-sized clots when I blow my nose. ugh Neuopathy not really going away during my good weeks. Cold sensitivity gets better but doesn’t go away.

The next week, my good week, was Christmas. I got to spend time with the kids and the lovely Miss Moira for her first Christmas.

Jan 3, 2013 was chemo number 11. A day late due to scheduling needs. So tired, my Facebook post is from unplug day that Saturday –

Unplugged from 11 of 12 sessions. I’m a day late as chemo got pushed to Thursday instead of Wed. Unfortunately, my WBC is low again so I get to go in tomorrow for the nasty Neulasta shot. Not looking forward to going in to work on Monday, I’m going to be sick and sore. /sigh

One thing that did help quite  a bit with the Neulasta is to start taking Claritin a few days before your shot and continue for a few days afterwards. It did cut down on some of the deep bone pain.

UGH, what a FUBAR kind of day already. Went in at 930 to get my shot but parked at the wrong spot and had to walk to the other side of the hospital to register at the ER, then had to walk back to start to the Out Patient Treatment room only to have nurse tell me it has to be 24 hours since unplug to get the shot. She let me sleep in a recliner in the treatment room while she got it sorted out. Got sent home for a couple of hours to nap and come back at 130 to be taken up to the 6th floor to get my shot finally… I’m exhausted.. and I have pink eye… and everyone in the ER had the flu… /sigh

I cried a lot that day. I had never felt that level of fatigue before. It was downright painful. And of course crying makes your nose run, which makes you blow it more, which makes it bleed more. I believe Em was finally getting immune to seeing piles of blood soaked kleenex. Constipation? Diarrhea? I never knew what to expect. Between neuropathy and fatigue I stumbled against a lot of walls.

I didn’t end up going to work that Monday. I spent the day in bed and Em and Steve brought me dinner in bed.

Doc Phillips set me up to see a radiation oncologist just to cover all our bases. She thought my records looked great and didn’t see any need to look into radiation for me. YAY.

Jan 16, 2013 was chemo number 12 – LAST ONE Facebook posts –

plugged in for last chemo…¬†¬†Doc held the oxalyplatin due to my neuropathy. We are holding off on the maintenance until the next scan and see where we are. I go back next month for a line flush and then a month later for blood work and flush. … now just have to get through this last session…

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chemo is done… at least for a while. holding off on maintenance until next scan probably in April. Neuropathy has finally hit, had my first actual bloody nose, and now have the mother of all head colds…can’t breathe /sigh

This head cold whipped my butt for several days. It took me a while to recover from chemo effects. ¬†A few days before the Super Bowl I was having cramping and gut pain and finally ended up in the ER Friday night. I did get to scare a few kids. I was in pain and crying and we have already established what happens to my nose when I cry. It’s flu season so I have a face mask on. Nose is running and itching so I rub it through the mask not stopping to think that my nose is bleeding. I’m sitting in a corner, curled up in a chair crying with a very bloody mask on my face. Kids were definitely avoiding going near my corner.

ER grade pain meds took the edge off while they tried to figure out what was wrong. Sent me up for a CT and low and behold… I had a blood clot in my mesenteric vein (abdominal vein). ¬†Two nights spent in the hospital. Saw docs from my regular doc’s office. They started me on Warfarin. ¬†Now Warfarin needs time to get your clotting times down. They take regular blood tests to see where you are at. In the meantime they said I would need to give myself two shots of Lovanox a day. It uses a very fine needle and is injected into the gut. They taught me how to do this and sent me home with pain meds in time to see the game.

The Lovenox shots weren’t difficult at first. It was only suppose to be for a week at most. Well of course my INR, (basically my clotting time),¬† was not going up to where they wanted it so I continued on the shots. The shots were causing bruising and deep hematomas on my belly. ¬†I ended up using the shots for several extra weeks and my belly was looking like I had gone 10 rounds with Tyson. I was having difficulty finding a place to inject myself.

INR never did get up to where Doc wanted it so he decided to try me on a new drug called Xarelto. No weekly levels, don’t have to wait weeks to be off it for surgery, great. Within 4 days of starting it the hives started. I would scratch myself raw. Took a lot of benedryl and tried to live with it. Finally Doc said we were going back to the Warfarin but we weren’t going to worry about getting the INR up where he had wanted it before. So now I’m on 10mg of Warfarin every day.

End of my Troubles? No more medical issues this past year. ¬†Monthly trips to Doc’s office for port flushes and blood work. CT scans and x-rays every four months and everything has been looking great. I made it until Dec 2013 until things weren’t looking quite so great, but that’s another post. Now you may guess at why I’m posting again.

~~ Gayla

Asgara Queen of the Not So Mysterious

Chemo Treatment #7

Wed Oct 31- 2012 Chemo #7

Session 7… you’d think counting down now would be easier than counting up…I don’t know… I had difficulty going in for session 7. I just didn’t want to do it any more.

I had had a weird week leading up to chemo day.¬†Let me say that as much as I hate the Oxalypatin I think I hate the Avastin more. ¬†The Wednesday of my¬†good¬†week I had a sore reddish area on my lower right leg. I suspected a clot, especially since that is one of the issues they watch out for with the Avastin. I called the onc’s office the next day and they got me in to have a doppler ultrasound of the blood flow in my leg. ¬†Yep, it was a superficial clot in the lower leg. I went up to see Daisy real quick after the lab visit and she said we can handle it with heat, elevation, and ibuprofen.

I started work again on the 22nd. My good week before session 7. It seemed to go fine. A six hour day is not too bad. Chemo week I did two eight hour days on Monday and Tuesday. I was planning on going in on Thursday also but as you’ll see, I didn’t make it. /sigh

On to my next problem with Avastin. It has my bp spiking and this is causing some hellacious headaches. ¬†The day of my chemo my bp was 162/98 first thing in the morning and I woke up with a headache. I’m now on hydrochlorothiazide, a diuretic for high blood pressure. One more pill to add to my daily regimen.

Couldn’t draw from my port again this session so I had the arm stick. My WBC was low but not low enough yet to need the evil Neulasta.

I think I slept almost the entire session on Wed. I usually get a chance to read some or to watch a movie but eh… hope I didn’t snore.

Thursday is normally a decent day for me but I had such a headache again I couldn’t go in to work. Normally Saturday is my bad day after chemo. Last session it was Friday. This session it was Thursday… Friday… Saturday AND Sunday. Could have been Monday too but I went to work anyway. I spent 4 days basically lying around in bed napping and watching tv. Headache, mild nausea, and just general fatigue. ¬†I KNOW that there are people who have it much worse than I do on chemo. How do they do it? I’m in awe.

Still have the cold sensitivity and some numbish feelings in my fingertips and lips of all places….

Tuesday I woke up feeling so much better. The rest of my third week of work went much better, it helps that I have great co-workers who look out for me.

Friday I got to babysit ( ūüėÄ ) and then went out to dinner with son and daughter in law.

Five more… Five more…Five more… /sigh

~~ Gayla

Chemo Treatment #6 (My boyfriend NED, still sticking around)

Wed Oct 17- 2012 Chemo #6

Session 6. Halfway through. Guess I can start counting down from now on.

Couldn’t draw from my port this session so I had the arm stick. My WBC was good again this session and so no Neulasta again!

The doctor confirmed my NED status this week. He said remission is possible and he even used the word ‘cure’ and said it wasn’t impossible. He called me Thursday afternoon to confirm that my CEA was continuing to go down. From 2.2 it was now 2.0!

They upped my Oxaliplatin back to original values. They had decreased it when my WBC was low early on. Between the addition of the Avastin and the increase of the Oxy it seems to have been a weird session for me. I slept most of the infusion. I felt good most of Thursday and stopped in at work too. Friday I stayed in bed most of the day. Bowel issues kept me from feeling good. My pump beeping woke me up and I got up to unplug myself.

Em hooked Netflix up in my bedroom and I crawled back into bed and fell asleep again to some documentary. Saturday is normally my worst day but I actually stayed up most of the day. Didn’t feel great but stayed up anyway.

It’s hard to describe just what I feel like. ¬†From breast bone down to tush I just feel off. Vaguely full, vaguely nauseated, slightly twingey. Bowels, while¬†working don’t seem to be working right. Food tastes just off. My appetite is fine but food doesn’t necessarily taste good. I have the cold sensitivity in my hands and while I seem to be able to eat cold things, eating ice cream with a metal spoon makes my lips tingle. Those who know me will find it odd when I say that chocolate ice cream doesn’t hold it’s old appeal.

I head back to work yet again tomorrow. Why am I so nervous? I have to keep my hours between 6 and 24 a week. I have face masks and hand sanitizer and disinfecting wipes at my desk. I took my water and coffee mugs back in on Thursday so I should have no problem keeping hydrated. I have to remember to try and take some walks during the day.

Oh well, early to bed….

~~ Gayla

Chemo Treatment #5 (Meet Ned!)

Wed Oct 03 Р2012 Chemo #5 

Session 5. Nothing extra I can say about this session, #3 was a quarter of the way through, #4 was a third. Next session, #6 will be half. This is just #5 of 12.

Had an easy blood draw from my port again this week. So much nicer than arm sticks. Again, no Neulasta :).

They were really backed up so I saw Daisy again.

If you remember, session 4 they drew blood for CEA but the results were not back at the time. This week I got the results. My CEA is 2.2!!! 90 pre-surgery, 8.5 pre-chemo, 2.2 now!!! Below 3 is normal. Right now… just this minute I am NED, No Evidence of Disease. I will probably have another scan within a month or so but my last scan was clear and now my markers are normal.

NED is kind of scary. I know it doesn’t mean I’m done, it doesn’t mean the cancer is gone, it doesn’t mean it won’t rear it’s head again in a month, or a year, or 5 or 10 years. It means right now and it seems too good too fast. Too good considering I still have 7 chemo sessions to go for this round and I still feel lousy. Guess I’m still waiting for the other shoe to drop.

Mary, one of the wonderful chemo nurses, noticed my tears when I walked from my meeting with Daisy to the lounge. She came to me immediately to make sure I was all right. These ladies are wonderful.

I had the Avastin added to my cocktail this week. This first time added an additional hour and a half to my lounge time. Next session Mary said will be just an hour extra and the rest will be only half an hour more than I have been having. I guess they take things slowly at first to make sure there are no adverse reactions.

I normally go in to work after chemo just to make sure they know I’m still alive but I didn’t get out of chemo until after 3 so it wasn’t worth going in. I did get my paperwork for LTD so I went in to work on Thursday instead. Caused trouble with co-workers, stopped productive work, and again interrupted a meeting my HR benefits director was in so I could get my paperwork done. My job was complete. ¬†One of my wonderful co-workers had to stop at the grocery store after work and so did I so she took me with her and drove me back to my car afterwards.

I felt pretty good Wed and Thu. A little cold sensitivity again and my ongoing constipation problems continue but I’m getting use to it. Stool softener, Sennakot, pro-biotics, prunes, water water water…. and Miralax waiting in the wings in case of extra issues.

Friday I was dozy all morning and Em came home just in time to help me with my unplug. I crashed early Friday and all day today, Saturday, has been a complete wash. ¬†Other than going to the restroom I didn’t even crawl out of bed until 3 or 4 in the afternoon. I just lay in bed watching TV. I was hungry yet nauseated at the same time. Nothing terrible just not feeling good. I ended up taking a Compazine with my morning pills. I haven’t taken one of those in several weeks.

It’s now 830 pm on Saturday night and I feel like crawling back into bed but the mindless TV I want to watch I don’t get in the bedroom. Sundays I’m usually feeling better… let’s hope it stays true this session.

~~ Gayla

Chemo Treatment #4 – Day Five

Sun Sep 23‚Äď 2012 Chemo #4 Day Five‚Äď Second Day Off

OFFICIALLY 1/3 of the way through. Four sessions out of twelve.

I know I haven’t written about the other chemo days, but really.. there hasn’t been much to write about. Friday, the second day, I was tired and feeling some constipation issues. Saturday was more of the same. I spent all morning in bed. Woke up early but really didn’t want to get up so turned on the TV and ended up watching several movies. When I did get up I didn’t do much more than move my butt to the couch. I came close to taking a Compazine but didn’t end up feeling like I needed it.

Bowel issues continue to be the bane of my existence. I take softeners morning and night, two Senakot at night and drink Miralax as needed. I am going but the side effect here is  extreme flatulence. Going to add Gas X to my med regimen to see if that helps. Otherwise my co-workers will definitely think twice about wanting me back.

I feel like I’m a sixth grade boy, all my thoughts seem to be¬†scatological¬†in nature. Maybe once I make the 5 year NED mark I don’t talk obsessively about poop and farts. It’s sometimes difficult to think of myself as sick right now. I have no issues other than chemo side effects. A little first bite issue that comes and goes for a few days. The cold sensitivity in my fingers is annoying when I want something out of the fridge. It doesn’t seem to affect my eating or drinking anything cold, just my fingers. My lips do get a bit tingly if I eat ice cream :).

Today I felt better and ended up doing a few chores around my pig sty of an apartment and made a big pot of chili. It’s definitely that kind of weather around here.

Had a nice long talk tonight with my brother and sis-in-law from Kansas City.

~~Gayla

Chemo Treatment #4 – Day One

Wed Sep 19 – 2012 Chemo #4 Day One – Chemo Lounge

Session Four — YAY.

They were able to draw my blood this week from my port. Last session the nurse couldn’t get it to draw. When you get poked as much as a cancer patient does, being able to do your blood draw from your port instead of adding a vein stick each session is BIG.

This session I saw Daisy, the NP. She is great! First off, my WBC was good so NO NEULASTA this session! Second, she okayed my use of cimetazine and melatonin. She even commiserated with me the lack of availability of CBD. She gave me a good proactive protocol to help with my constipation issues.

My CEA was tested today but the results weren’t in right away.

I asked about follow up testing. Daisy said that they would probably be doing the CEA every other session and would probably have me scheduled for a scan half-way through my 12 sessions and every three months for a while. My maintenance chemo would probably be six more months of the same regimen minus the evil oxaliplatin (the kick your ass part of the cocktail). To be fair, the oxi is also a kick cancer ass part of the cocktail.

Daisy said she had a stage IV colon cancer survivor patient in another one of their offices and she was going to ask this lady if she could pass on contact information so we could talk. I would like to talk to someone ahead of me in treatment and doing great.

Infusion went well and I had my benadryl nap right on time lol. After infusion I went and got Em and we went out to eat and stopped to get my new meds. We also stopped at Fava Tea a wonderful store near here and I picked up some Ginger Mint green tea. Between the ginger, the mint, and the citrus I am set for keeping the nausea at bay. Drinking a hot tea in the morning will also help with my constipation.

Can you tell I had a good day? ūüėÄ

~~ Gayla

Asgara – I’m not a princess and I don’t need saving… I’m a freakin’ ¬†QUEEN and I got this shit handled.

Getting Ready for Number Four

I talked last week about going back to work. I think I’ve been premature. At times I think I’m ready and I am bored and want to be at work but at other times I get nervous about future chemo treatments. I know that the effects can be cumulative. I already feel I won’t be able to put in my full hours during chemo week. If I stay out a few more weeks I will have LTD to fall back on when I can’t work. That will help me until the end of chemo. Hopefully, things will be better by then and I can come back to work full time and feel good about it.

It was a big decision and I stressed over it all week but I can’t in good conscience give up the LTD option.

******** WARNING TMI PARAGRAPH *************************************

Last week I worked three days and was terribly constipated the entire time. I won’t go into too much detail about fixing the issue, just say I used every laxative at my disposal for several days and in the end my fix involved a rubber glove and a soaped finger. After things were fixed I felt like I was anally compromised by a Mack truck.. from the inside out.

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I did have some really annoying cold sensitivity off and on at the beginning of last week but it has disappeared this week.

I have chemo number four tomorrow. When it’s done I’m 1/3 of the way through. YIPPIE.

I want to talk to the onc’s office about cimetidine, which is basically Tagamet. There are studies that show that this can inhibit in vivo growth of human colon cancer.¬†Melatonin is another supplement I want to discuss. Again there have been some studies that show that it can induce cell death in cancer cells.

The last thing I wish to discuss with the doc is cannabidiol or CBD.  Studies have found that CBD, a nonpsychoactive component of the marijuana plant, is a potent inhibitor of breast cancer cell proliferation, metastasis, and tumor growth (along with other metastatic cancers).  Unfortunately, Wisconsin is not a medical marijuana state and CBD is still considered part of a schedule 1 drug and is not legal for use even though it is nonpsychoactive. Please click on the first link in this paragraph for the pertinent information.

One thing I did want to share with any readers I have is a predictive tool found on Memorial Sloane Kettering’s site. MSK is one of the top cancer centers in the country. This tool is called a Nomogram. I fill in the information from my pathology and surgery reports (one item I’m not sure about) and this tool is meant to show probabilities of being disease-free five and ten years after surgery based on the information I fill in. This is not probabilities of mortality, it is probabilities of¬†recurrence.

If I assume the one item I’m not sure about is positive, I show a 1 in 3 chance of being disease free still in five years and a 1 in 4 chance of making it to ten years disease free. If I assume the item I’m not sure about is negative then my numbers jump to 1 in 2 for five years free and 1 in 3 for ten years. These are all odds of being found NED (no evidence of disease) that I will gladly take. ¬†Mayo’s¬†Adjuvant Tools¬†give different but better numbers.

For anyone wanting to play around with my numbers, I am 52, tumor was in sigmoid colon, my CEA was 90 but tool only allows a high of 64, TNM stage was T3, differentiation was moderate, I had 0 positive nodes out of 7, there was perineural invasion and I’m assuming positive on vascular involvement, and I am in chemo after surgery.

~~Gayla

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