Peritoneal Cancer Journey Phase XIXIII

Peritoneal Cancer Journey Phase XIXIII

It is December 22^nd and I am about 2 to 3 months behind in my blog…  It has been a challenging few months to say the least.  This morning I am sitting on my couch watching light snowfall thinking what to do with the blog, and then it hits me to get caught up…  Laughing…  Yes, entry 23 will cover from September to now…  Lots went on and I am happy to say I really feel I am getting to the other side of all of it…  I think…  <Smile>…

My doctor visit on October 3rd was good; I had 2 CA draws during this time.  My CA-125 is at 2757 down from 3222 and 3300 from my last doctor visit so I am encouraged, I will take any kind of decrease in my CA #’s, no matter what as long as it is down...  Smiling…  It has been 5 weeks since my last doctor visit, which my doctor does not like.  He wants to see me every 3 weeks.  I said not a problem as I am here every week anyway, smiling…  I am tolerating treatments well, not overly tired…  I nap a bit on Wednesday when I receive Chemo, work part of the day.  Nap when I get home from work on Thursday before dinner, and it seems by Friday I am a bit more like my self.  Then I have the weekend to relax and I am ready for the next week, so not too bad.  Much easier than the 3 drug combo I was on…  Much…

So I got in to see the Ear, Nose, and Throat Doctors Physician Assistant.  She said both sides of my nose are very dry and the capillaries are very close to the surface of my nose, which is the cause of my bleedings.  She packed my left nostril with a Vaseline gauze in an attempt to get some moisture up there and put pressure on the capillaries so they don’t bleed and attempt to get them to calm down and heal.  Made a follow up appointment for Monday to remove the packing

Tonight is the 1^st Presidential debate that Megs and I will be watching.  This is Megs 1^st Presidential election so I said I generally watch the debates to get a overview of the candidates stand on things and research from there what I have questions on.  The debate was quite an adventure for me…  The packing in my nose kept making me sneeze…  One of the sneezes loosened the packing and part of it dangled in the back of my throat.  I called the Doctor and waited for a call back.  At one point I had to remove the packing myself as I was choking, not a fun thing…  When the Physician Assistant called she said to come in tomorrow and have my nose checked.  There was no bleeding and the packing came out easily… 

1^st thing Thursday morning I am seeing the doctor for my nose.  She looks inside said, you have not had a nosebleeds since being packed?  I said, that is correct, no nosebleeds since being packed, she said I am very surprised, she removed a clot and the adventure began: cauterized 7 spots on the left and 4 spots on the right.  She had me so numb I couldn’t feel my mouth or throat…  At one point she asked how I was doing, I told her I couldn’t feel my mouth or throat…  She said that will go away in about an hour…  Oh My…  <smile>  Each time she cauterized a spot on the left it would bleed somewhere else.  She then packed my left nostril with a sponge so not to repeat the gauze incident last night and to stop the bleeding by putting pressure on the capillaries that are a real problem for me.  She kept my right side open so I might be able to breath a bit and wrote out instructions on what I need to do.  I am on an antibiotic for the next 5 days to prevent any infection and will go back on Monday to remove the packing and see what is going on.  I stopped at the drug store to pick up my nose supplies to begin my regimen.  I have to keep the sponge very wet and my right side moisturized.  Neither can dry out…  And sneezing wow…  comes from my toes.. Oh yeah I had to learn to sneeze out my mouth, not my nose…  That is weird… Now I am a pro, probably will not sneeze through my nose again…  <laughing>…

On Monday they removed the packing and my nose looks better.  We had scheduled a trip on October 19^th to Falling Water to tour a Frank Lloyd Wright home.  It is one that I have not seen in person before.  I was not able to go with getting the packing just out of my nose.  I had to lay low and take it easy to allow my nose to continue to heal…  Lynn went without me.  If I didn’t get any more nose issues the ENT Dr said I could go on our Los Vegas trip we have planned on 10/24.  With such short notice not being able to do the Falling Water trip we were not able to find anyone to go.  Bummer… 

The Vegas trip was one we promised my mom we would do for like the past few years.  We stumbled upon a really good deal, actually jumping in on a co-workers trip…  <laughing>  She arranged everything through AAA.  When she said what they were doing and the cost it was an easy decision.  I called AAA and said I would like to book 6 tickets just like what Sarah has…  Easiest trip I have every booked… 

The good news is no nose issues all week so I was able to go to Los Vegas.  We have a great time.  Saw Elton John in Concert, had great food (which is not so cheap in Vegas anymore…), lots of laughs and fun.  I did find I like the poker machine “let it ride”.  We found one our last day and I sat down with mom and played for a bit.  It was really fun and I was quite surprised spending $5 to $15 per hand… Those that know me yeah I shutter at playing a $1.00 on the slot machines…  <laughing>, It didn’t feel like real money to me so maybe that is why, not sure…  Won a little too so added bonus… 

When I return from Vegas I have another appointment with my Oncologist and my CA-125 is down again! It is now 2604.  I am really happy with my numbers going down…  I am not having nose problems right now so my doctor thinks I am on the other side of that now too, we like the sound of that very much…  With getting the weekly Taxotere my hair is thinning regularly and I had Laura my hairdresser cut it really short to help with the weird feeling you get on your scalp.  We are trying to see how long it takes for me to lose my hair with the new Redken shampoo we are using.  I am going to have a break with chemo the week before Thanksgiving as I have been getting weekly treatments since August so I am very excited about that…  I will not have another treatment until November 21st, looking forward to that weeks break.

On the 20^th I call to talk with the Nurses as I feel horrible still and want to see if I can delay chemo a little to feel a bit better…  I speak with them and it is decided that I will have chemo on Monday the 26^th.  That works for me, gives me the weekend to try and get on the other side of whatever I have or is going on.  I have lost my sense of taste at this point too…  Eating is becoming difficult again so I am taking Orgain to help.  I don’t want to lose weight to compound everything else.

We are having Thanksgiving dinner this year at our house.  I am really excited about it.  However a week before my nosebleed start up again.  I go see the ENT Dr and not only do I have to have more cauterization, but I have a sinus infection, which the Dr consults with my oncologist if it should be cultured or just go ahead and treat.  They opt to treat.  So my nose is repacked, I am on a really strong antibiotic and I go back the Wednesday before Thanksgiving to have the packing removed and my nose checked out.  I am miserable, I feel horrible, can’t breath through my nose with it being packed, can’t blow my nose…  I’m not sleeping at night, not eating and overall not feeling well…  And we have having Thanksgiving dinner and I can’t do anything…  Then there is our daughter, SUPER Megs…  She jumps right in, goes grocery shopping for thanksgiving dinner…  Does whatever we need her to do to help us feel somewhat ready for Thanksgiving.  Everyone in my family made something for dinner so it really helped.  The day before Thanksgiving the packing is removed from my nose and I am instructed to do nothing or my nose will start to bleed…  So nothing I did, no lifting, bending, moving, nothing…  Lynn’s sister Christine was over on Thanksgiving and helped Lynn set the table and get everything else ready…  I napped in the early afternoon and when I came back downstairs our home was ready…  It was magical… 

We had a wonderful dinner and evening with Family…  The turkey took an extra 45 minutes to cook; I think I read the wrong time…  I think I calculated time for an unstuffed Turkey, anyway everything worked out fine and dinner was wonderful.  I could taste some things, not everything which was disappointment, but able to taste some things so all wasn’t lost <smile>…

On Monday November 26^th my sister Barb and I arrive at the infusion clinic for my chemo.  I am having difficulty breathing, still not feeling well…  Just completely out of sorts is the best I can describe.  Jackie sends me for a chest x-ray because of my breathing.  The radiology is really busy and everything is taking a long time.  When my chest x-ray results are in my Oncologists says I need to come back tomorrow and see him.  So Barb and I pack up and go home to come back tomorrow…  Barb and I laugh as Lynn will not let Barb take me any more as each time she does something happens… Weird huh…  Because I am now seeing the Doctor, Lynn comes with me.  We meet with the doctor who reads the chest x-ray and does and exam.  He diagnoses me with Pneumonia…  okay that is quite a surprise to me that was not what I was thinking that was what I had…  Really had no idea what was going on with me…  I am going on a really strong antibiotic again but better for the lung…  This is like the 4^th time I am on an antibiotic in 2 months…  We proceed with chemo…  Lynn mentioned on the way home she is a littler relieved that that is what is wrong with me, I laughed as I was thinking the exact same thing…  At least we know what is wrong and it is being treated now…  In a few days I start to feel a little better…  Oh how I hope I am getting on the other side of this adventure, I really hope something goes right, I could use some good news… 

By the time I finish this antibiotic I can’t taste anything and am starting to have issues with textures.  For the first time I am struggling not to lose weight.  This is weird for me as I have not had to deal with this before so I search to see what I can do to help my taste…  2 of the antibiotics I have been on recently are known to effect taste and can effect taste for a while after stopping.  All righty then, I am not wanting to know that… Anyway some of the suggestions to get through it is to talk with your doctor about switching antibiotics to something else.  Well I have finished them so that won’t work.  The other suggestion was to keep with simple foods. Avoid layering them with spices or other ingredients.  So I will try that, and you know that worked the best.  I made meatloaf, potatoes and a veggie and I could eat it, then I tried a simple stew and it tasted good…  It didn’t bother me, as much and I could almost taste it.  So I will cook or get foods that are simple with not a lot added to it.  The more complex the less I can eat it right now and as soon as this texture thing kicks in I can’t finish…  It is a real pain in the behind…  This too shall pass.

I am going weekly for chemo again and it is going good.  I am not 100% yet, but hope I am getting there.  I’ve had my head buzzed as the top of my head hurt and once my hair is buzzed that feeling goes right away…  So over the past few weeks I’ve been demonstrating my head-wrap techniques that my sister taught me during chemo… <Laughing>  A number of patients have commented at the infusion clinic how willing I am to take my scarf off and show everyone how to wrap…  Barb did take me to more chemo after the pneumonia episode.  We stopped at a wig place on the way home.  I was thinking this go around I might want to wear a wig from time to time for something different.  We have fun trying different styles and colors.  We were both quite surprised that deep brown looked the best on me.  Barb and I are twins now… <laughing>…  Will have to take a picture of my new due and wrap to show my different looks…   

On December 11^th I see the ENT Doctor again as I got 2 nose bleeds in like 5 minutes…  She looks in my nose, and yes cauterizes both sides, packs the left side and I am on an antibiotic again…  The weather really needs to stop doing the 40-degree swing thing or my nose will never heal…  I am putting so much up my nose trying to keep it moist between saline nasal spray and saline nasal gel.  I don’t know what else I can do…  Yes, they make a saline nasal gel…  Works really well.  The ENT Doctor said it is better; it is just going to be challenging winter that we may need to just work together to get through it.  I guess the good thing is this all happens after this weeks chemo so I don’t have to go there with my nose packed, sigh…  I am having real difficulty eating again with taste and textures…   When I get on the scale at the doctors office I find I’ve lost 6 pounds.  Yes, I am not happy about that right now…  I need to eat or I will not get over this crap I am dealing with.  Yes, I am very cranky right now and my sense of humor is thinning…  <wink>   Plus through all this I am stuck at home trying to get myself better, no Christmas shopping, no holiday parties, no visiting, no wine <chuckling>…  Just being at home or going to doctors’ offices.  Huh, I think I am suffering from cabin fever <wink>.

So the 18^th I see my ENT Doctor and she removes the packing, checks my nose and is pleased with what she sees.  Says there is lots of healthy tissue.  Yea!!!  There are 3 really tiny spots on the left that she cauterizes and says words to my ears, “does not need to be packed”.  <laughing>.  Says looks good so keep up the moisturizing regimen.  I will experience some oozing, that it’s to be expected.  I am to call and go in if I get multiple nosebleeds.  I maybe getting to a good place with my nose, dare I hope….  <smile>  I am a bit optimistic…

Next is My Oncologist Doctors appointment on December 19^th.  He reviews my blood work, my hemoglobin in 7.8 (low) which is contributing to my difficulty breathing, my platelets 171,000 (that’s good), my white is 1.6 (1600, low) okay will have to continue to be home. Then he rattles off a number 1066…  I stop, not sure I heard right, so I ask, is this my platelet count, he says no, I say my white, he says no….  I say my CA-125!!!  He smiles and says yes…  Oh my God!  That is almost a 50% drop, from 2034 to 1066…  No way…  Lynn and I look at each other is amazement, and excitement…  It has not been that low in like 2 years!!!  Makes the last 2 months almost tolerable!!!  Well, not quite… <laughing>  We talk about my breathing as I do loose my breath when I go upstairs and such.  That could be tied to my low hemoglobin, or getting over pneumonia, or a rare side effect to the taxin drug…  Not sure exactly what the culprit is here.  We also don’t want to transfuse, we are hoping my body will generate blood by itself with rest.  So on Sunday I will run to a local hospital for blood work to see where I am level wise and what do we need to do to help me.  So I am homebound again with low white counts and hemoglobin…  With a CA-125 like that it certainly makes it more tolerable…  Merry Christmas to US!!!  Woo Hoo!!!

Peritoneal Cancer Journey Phase XIXII

Peritoneal Cancer Journey Phase XIXII

Each week I have blood work on Monday for treatment on Wednesday.  If I get it done 1^st thing in the morning then my treatment is at 8am on Wednesday.  If I get it late in the day or on Tuesday, then my treatment is at 9-10am on Wednesday.  We are not sure when I will see the doctor as we didn’t discuss that my last doctor visit.  I assumed at my 4^th treatment, we shall see. 

Over Labor Day weekend we trip off to New Jersey to spend time with Lynn’s niece, her husband and their adorable twin baby boys.  They are turning one later in September.  I can’t believe they are going to be one, that year went quick…  I am sure it doesn’t feel so short to them…  We got up with the boys each morning we were there.  The first morning Jess and Kyle got up with us and we told them to go to bed, that we can take care of the boys.  That we would love to spend that time with them…  Not sharing them with anyone…  It was such fun, they are a handful and so much fun, they have great personalities.  They play nice together for 1 year olds…  <laughing>.  During our visit what we believe is a side effect of Avastin reared it head…  I’m getting nose bleeds way to regular and they are becoming more difficult to control.  I had one on Sunday that scared me, it lasted about an hour.  I will be calling my Ear, Nose, Throat Doctor when I get back to see what is going on.

After we got home Lynn started to make plans to go back in a few weeks to make their 1^st birthday party over September 21^st weekend.  That was a trip I didn’t plan, but what the hell, they only turn 1 once and I think I will be okay as the weekly treatments don’t seem to take as much out of me as the 21 or 28 day treatment cycles do. 

When I had my Sept 5^th treatment my labs were not there.  We had to call the New Jersey Quest office that I had my blood work done.  I had it done before we left to come home on Tuesday.  They said they would fax my results so that would not be problem, but alas, they didn’t fax the results.  I had their phone number in my bag, so Barb (my sister took me to my chemo) and started trying to call them on our cell phones so the nurses could get my blood counts.  That was a bit frustrating as it took a ½ an hour to get them.  They were supposed to call and get the fax number from my Doctors office, apparently they did not.  I thought that was one of the benefits of using quest labs that they are all over the country…  Well I guess I will put my doctor’s fax number in my contracts so the next time I am in New Jersey I can make sure they have the fax number so not to delay my treatments and put them behind…  I also updated the Laurie and Jackie (my Chemotherapy Nurses) about my nosebleeds.  Jackie said if I can’t get in to my ENT Doctor to call them and they would see what they could do.  Before I left the infusion clinic I had to ask for another 6-month lab script because I used it at the New Jersey lab.  The nurses made a point of asking why I needed it, I think they sometimes do that to get me talking with the other patients there encouraging them or maybe inspire some to try and do what they want or love to do.  That they can see someone going through what they are doing things that maybe they can during their weeks that you feel not so bad…  I was talking to a woman that was just starting chemo, and we were just talking about what I do.  Going to work, because I was asked you look nice are you going out to lunch after your treatment?  I said, no I am going to work for part of the day today…  The woman looked at me and said oh, “you are that strong woman that we are all supposed to emulate”.  That made me chuckle and say yeah, no that’s not me.  What I wish I said is that the night after I was diagnosed I promised myself lying in my hospital bed that I would not let this define me.  I will do what I want when I can.  I think I have been able to do that.  There are things of course that I can’t do things I need help with.  I can do more than I can’t do.  Sometimes I push a bit, I do rest when I need to and I am not afraid to say I can’t do that, though I don’t like to admit that…  I do get frustrated sometimes, then I try and take a step back and appreciate what I have and that I am alive and doing well, then it is easier to let it go…  The other thing that helps is go do something else, then I am not focusing on what I can’t do because I am dong something else, <laughing> just like dealing with a toddler...  I have learned to be more appreciative and that is a good thing…  We all can learn that <smile>

Lynn and I scheduled our sailing lesson to do the man overboard test and pass so we get certified to sail...  It was a beautiful sunny day…  yeah not much wind…  We get the sail boat out in the water chasing what breeze there was.  Lynn starts 1^st to do man overboard, well actually it was a life preserve…  The current in the lake was moving the life preserver faster than we were sailing <laughing>, so Lynn had to chase the preserver… She did it and passed…  We were sitting in the lake looking for a breeze, and finally there was one, so I decide I would try it.  I swear the minute I took the tiller the wind died and we actually were going backwards because of the current…  We waited a bit longer then decided to motor back into the dock as there was NO wind…  Guess my man overboard test will have to wait…  Our instructor Mark completed Lynn’s certificate…  We all applauded and yelled that Lynn did it…  Me well maybe next time.  I was so ready to try, oh well…  We stopped at one of our new favorite restaurants on the lake, Dugs Dive.  The food is good and it over looks the lake, it’s really enjoyable…  We have been going there for a bite to eat after each sailing lesson.   It’s become a ritual or reward that we look forward to after sailing…

Peritoneal Cancer Journey Phase XIXI

Peritoneal Cancer Journey Phase XIXI

Wow, my 21^st post…  Where does the time go, it certainly does not wait for anyone does it?

My next appointment is August 22^nd, and I really feel the last month’s treatment…  It has been one thing after another.  Hopefully we will get some much welcome good news…  1^st thing in the morning I had a comparison CAT scan without contrast.  That is very welcome as no Barium drink…  When I verified that I have an 8am appointment with the radiology company, they mistakenly said it was with contrast.  That participated a conversation that yeah, that’s not what I understood it to be, they went and checked, and phew my mind is not totally gone. <smile>  A comparison CAT Scan with NO Contrast…  yippee…  Oh the simple things in life make me happy <laughing>.  So bright and early we arrived for the CAT Scan without contrast...  Then pop over next door to see the Doctor and get an update to where I am… 

There is good news today, my CA-125 dropped to 3300…  Yeah…  My platelets are at 107,000, not as high as I would of liked, my Hemoglobin is 7.8 yes I could have guessed that.  Can feel when I am below 8 which is quite often on carbo…  The comparison CAT Scan shows the fluid in my abdomen resolving, BIG RELIEF, I’m thinking….  Overall VERY GOOD News…  My doctor is recommending we switch my regimen now, I agree...  He is recommending that I go to a weekly regimen on a Taxane drug given as a single agent.  He first said Taxol, which I quickly said; I don’t think so as I am allergic to that drug.  He looked at me and asked what was my reaction.  So I refreshed his memory my March, 2010 reaction with the Taxol being introduced 3 times.  With each introduction the reaction became more pronounced or severe, however you want to look at it.  He thought for a moment and said, we introduced the drug 3 times, I said yep, and then we went with Taxotere…  He said it would be Taxotere then.  The nurse asked about Abraxane.  The Doctor asked about if there were any studies of its use as a single agent.  Donna was not sure.  Lynn’s niece Jess mentioned Abraxane as it is similar to Taxol, except instead of being in a fat base solution it is in one that the body more readily accepts.  The cancer cells supposedly interprets what covers this agent as a sugar and the thought is, because the cancer cell thinks it’s a sugar it absorbs it easier and once absorb it kills the cell.  Interesting approach…  For me we do believe my reaction to Taxol is the liquid it is mixed with, which is the main reason for the reaction, not the drug itself.  I am able to take Taxotere fine…  So my one infusion nurse said they will be investigating Abraxane over the next week.  On Wednesday I will start the weekly chemo regimen on Taxotere.  My doctor seems to want to keep me on some type of combo with a platin drug.  We all talked about it.  I feel and said to my doctor that my body needs a break from the platin drugs.  They are taking their toll, especially the Carbo on my red cells…  My red cells need to come back, I am getting blood transfusions very regularly now and I would feel better if my morrow were generating enough by itself.  The downside to the Taxane family of drugs is I will lose my hair again.  It’s not terrible, it is hard seeing your hair fall out.  I am so attached to it <smile>.  This too shall pass…  Well I guess I will be back to the head wraps and I can get that Henna done on my bald head, that will be different and I think fun, since there is not choice here, I shall make the best of it…  A close friend sent an article about an artist in Toronto who does natural hennas on bald cancer patient’s heads.  It looks really cool and I thought what fun…  So the decision is reached that I will be on a single agent for now and we will monitor how it is going.  We can always change if things indicate it…  When we were talking with my sisters about the henna my one sister said you can get a henna done for the Christmas Holidays, well that resulted in quite the laughter in that I envisioned Santa and his slay with Reindeers flying around my bald head, now that is a vision…  <laughing>

Before my new regimen begins I need another blood transfusion as my numbers are still on the low side.  So I will go have that done on Friday.  I will stop at the hospital on my way home to be cross and typed…  I am very happy to be getting a break from Carboplatin.  My blood needs a break and opportunity to regenerate a bit by itself.  So Friday morning I arrive for my transfusion.  I had a hard time finding the clinic for my blood transfusion.  This is the first time I am at the new center at a different hospital.  The drive was not bad, all thruway.  But the directions to the center were confusion and it took me a bit to find it.  When I finally arrived I was a few minutes late, that wasn’t too bad.  I recognized quite a few faces today; many were there when I had my last transfusion.  The new space seems nice, though the reception area is cut off from where we sit so there is not much activity to watch.  I sleep after they give me a Benadryl anyway so the only thing I see are the inside of my eye lids...  The nurse commented we only give you a pill, you much be a light weight…  <laughing> I am when it comes to drugs…  Doesn’t take much to knock me out…  When I awoke it is lunchtime.  My transfusion is moving right along, just like they usually do so I will be done by 1:30ish that’s cool.  When one of the other patients was leaving they were commenting how when their hemoglobin drops into the 8’s they really need a transfusion and feel so much better after it.  I was chuckling to myself because if I am above 8, I generally don’t get transfused, I feel okay.   I’m thinking I’m hoping to be in the 8’s after this transfusion…  <smiling>

Well Wednesday is here and I am ready to begin my new regimen…  It will only take about 1 and ½ to 2 hours total for the transfusion, so I am thinking I will be able to go to work after this…  That will help pass the time…  The infusion of Taxotere is uneventful, as always there is chit chatting with other patients…  One woman asked if I would lose my hair, I smiled and said yes I will.  Second time around, she looked really sad for me, I smiled again and said this time I am going to get a henna tattoo on my bald head to have something different and fun to do…  That there is an artist in Toronto that will do this with a natural henna so when I am bald we will schedule a trip to Toronto to have it done, catch a show and what not…   That will be fun…  My blood counts are really good…  Hopefully they will stay good during this regimen and my CA-125 will drop regularly, that would be very welcomed… 

Peritoneal Cancer Journey Phase XIX

Peritoneal Cancer Journey Phase XIX

Next Doctors appointment and chemotherapy is on July 25^th, CA 125 up to 3939, yikes an 1100 jump.  Okay that is definitely not what I wanted to hear and weirder yet is I feel good.  I was so confident that my CA-125 was going to be a good drop this month…  Obviously the doctor and us are not happy, a bit frustrated…  The Doctor decided that I would have a CAT Scan before treatment… I asked if this would be a problem because I ate a light breakfast before my mega dose of steroids this morning?  He said no I am not concerned about your stomach…  Ahhhh, So next door I go to get the lovely Barium drink…  They have a new flavor now apple, which is actually pretty good considering I am drinking the first bottle warm…  Yum, breakfast of champions <Smile>.  I will be asking for this flavor from now on.  <laughing>…  Barb, my sister, came with me today as Lynn is in a training class for work, so Barb is taking very good notes…  I always have someone with me, as it is difficult to relay what occurred discussion wise in the doctors’ office after chemotherapy.  I seem to leave stuff out which makes Lynn not so happy then me frustrated...  Today is going to be a very long day with the CAT scan first; though I would need one before my next treatment anyways so I might as well get it over with.  At least that is what we were thinking.  My hemoglobin is 7.9, my platelets are like 205,000, and my white count is good.  Sigh, this doctor visit is turning into lots to do.  Starting with the CAT Scan then, with my hemoglobin at 7.9 I will have to have a transfusion on Friday to counter the continued drop in my red cells (primarily my hemoglobin) after chemo today.  It is also time for me to have another MUGA scan before my next appointment… Oh lucky me…  Well I’m having the CAT Scan done now, my transfusion will be Friday, so I only have to schedule the MUGA… 

After the CAT Scan I am back in the exam room to discuss the results with the doctor.  It was a little disheartening as there is fluid built up in my abdomen now, dang… Okay not a happy outcome and feeling concerned, so we discussed my regimen.  My doctor is not ready to switch it yet, so we are going with the same combo.  The only change is reducing the Carboplatin by 10 % to try and ease the effect this is having on my red cells (platelets and hemoglobin).  So I agree.  After sitting in the infusion clinic Barb and I were chuckling that Lynn will not allow anyone in the future to come with me because each time someone does something different happens.  We delayed as long we could in telling her as she is in a training class at work and we knew there would be a whole bunch of text’s asking a bunch of questions that we probably would not know the answers too…   <smiling> The one fun thing today (yes, there is fun…) is when I walked in the Infusion clinic one of the infusion nurses, Jackie had it decorated like a beach day!!!  All that was missing was sand to put your toes into, laughing…  I have a great imagination so I imagined my feet in the sand.  My Chemotherapy treatment didn’t start unit like noon…  So Barb ran out to get us some lunch, we will not be done until like 4-4:30pm.  After I ate lunch the benadryl kicked in…   I slept for like 3 hours, when I awoke we were finishing up Carboplatin which is the last drug in my combo of Avanistan, Doxil, and Carboplatin…  We were done for the day and both of us were exhausted.  Now I have to drink LOTS of water to counter the Barium and chemo effect… Oh boy things will really be slowing down now so I have to make sure I take my marilax daily and senekot if things don’t move in a couple days, otherwise I will not feel well…  Things moving make me a happy momma, laughing… 

On Friday I go to get my transfusion, the place is crazy because this clinic is moving to a sister hospital and the nurses are learning to use an electronic medical records system which is really slowing them down by at least 30 to 45 minutes per patient.  My appointment was at 8am and they didn’t get to me until after 8:30. I didn’t get my 1^st bag of blood until like 20 minutes from then.  To say the least it was another long day.  I didn’t get home until like 3:30-4pm.  I went straight to the couch as between this past Wednesday to today I am whipped…  The whole weekend I just napped and made sure I ate something every time I was up.  Can’t say every 2 hours because I am sleeping like 3 hours at a time.  Even on Monday I was sluggish and couldn’t focus at work.  So at 3pm I left early so not to over do it.  I went home to try and help rebound tomorrow.  This cycle was really tough on Lynn too, seems it is taking its toll on both of us…  Sometimes all that we are going through we forget it is really difficult on those watching us go through chemotherapy and all that goes with it.  There isn’t a whole lot they probably feel they can do for us…  I want to say here that being there to say do you need anything, or coming with us, or asking what we think we can eat really is a HUGE thing and comforting…  My support family is amazing and I pray they are taking care of themselves when I am not up to it…  Doing what they need…  Okay a teary eyed with that; note to self don’t do CAT Scan and Chemotherapy the same day, then a transfusion on Friday, way to much, way to hard on everyone involved…  <smile>…

My next blood work is on 8/6 and yes I got a call on 8/7, my platelets are down to 13,000,  Oh My, okay that’s not good.  All right, I figured I would get a call, as I noticed Sunday I had some bruising starting.  We had a Family picnic at our house yesterday, so getting ready it is easy to see why I bruised…  Though my Hemoglobin is 8.4, that is good.  So yes, I have to go for a stat blood draw on Wednesday, that actually works out, as I will be at the hospital getting my MUGA Scan, so I will get the blood draw done there.  Laurie faxed the order to the hospital’s lab and I arrived to knock two birds with one stone… Yes, I got a call on Thursday, my platelets are now critical at 7,000, and I had to go directly to another hospital that could accommodate a platelet transfusion…  So I grab my stuff from work, yes I was at work and off I go to another hospital.  I arrived in admissions and they had my entire paperwork ready, and sent me off to the outpatient treatment center of this hospital.  This transfusion took only 30 minutes…  Really quick, the paperwork took longer at the outpatient clinic than the actual transfusion.  The upside is the Olympics are on so I can watch them, which was fun.  They start the infusion and I get this head rush, I’m thinking oh no I’m not reacting am I?  I look in the mirror and no I look like me, no read face…  Then I do chuckle a bit; probably the volume of platelets they are giving me is giving my blood some much-needed volume…  I have another stat blood draw for tomorrow, okay now I am cranky with this whole cycle, feeling like I am just running from one appointment to another, which I am…  I am running from one thing to another and it is just kicking my butt…  It is what it is…  This too shall pass…  Right? 

Just a poke right now and I bruise; I do not like this at all…  I am feeling very frustrated by the whole thing, really need an emotional adjustment here…  So lets see, listen to momma’s jams and read a funny book… Also it really helps the Olympics are on, I love watching all the amazing athletes and what they all can do is amazing…   That really helps keep my mind off of it.  I talked with Laurie one of my chemo nurses on Thursday who said my platelet draws now need to be always done in a special blue top vial as they are clumping and they can’t get a good reading…  Okay, send the order and I will have it done.  She did say they are rising, last draw before clumping was 23,000, so I am sort of relieved.  I mean really, I’m cautiously relieved…  She said if I weren’t able to the platelet transfusion when I did they would have had to admit me to get it… Yikes, I didn’t even think of that, all righty then that is something definitely to be grateful for…  Okay now that is helping me to count my blessings, I seemed to have forgotten for a few…  phew, all it takes is something to put this venture back into perspective and I am back to myself…  <smile>

My sisters rent cottages up in Long Beach, Canada every year same week in August.  I went up for the day on Wednesday the 15^th to visit and hang out at the beach, watching the kids play and relax, read, and enjoy.  It was a beautiful day…  So glad I went.  The next day we had our first on the water sailing lesson, I really thought about cancelling it as it has been a difficult week at work (well except for Wednesday Beach Day), but I didn’t.  I am so glad I didn’t it was GREAT, lots of fun…  It totally changed my mood for the rest of the week…  The instructor told us 3 newbie’s that we did great holding the different points of sail.  I am still struggling a bit with the terminology; he said that would come in time.  He told the one instructor that we were ready for man overboard.  I am thinking not quiet… lol

Peritoneal Cancer Journey Phase XVIII

Peritoneal Cancer Journey Phase XVIII

Well from my blood work on June 18^th, my Hemoglobin is not coming up fast enough, I am at 7.6 and the doctor is recommending a transfusion so not to delay my chemotherapy next week.  I agree with that, so off I go to the hospital on the 21^st for 2 bags of whole blood…  My appointment is set for 8am.  I leave home at 7:10ish, so I have time to get coffee (an absolute must… smiling), something to eat for breakfast and be able to arrive by 8am.  Well when I got on the road it was like everyone had off today <laughing>, there was no real bottleneck driving, I got to the hospital in like 20 minutes (that has not happened before), this included parking the car.  I picked up some coffee and breakfast and arrived in the infusion lab by like 7:35 am.  When I walked in I said, I am really early, there was no traffic on the throughways that I did not factor in my commute this morning.  They chuckled; someone mentioned the schools are out so traffic is light.  Then said take a seat we will be with you shortly…  So I picked a comfortable spot and settled in for the next 5 or so hours…  One time I was there the nurses were commenting on patients coming in way early to try and get out sooner.  So I wanted them to know that I was way early, not because I wanted to get out sooner, though that would be nice, but that normally it would take 45 minutes to drive there with morning rush hour traffic.  I didn’t consider the lighter traffic with all the schools and colleges being out on summer break…  So it was a very nice, fast drive to the hospital…  After the transfusion I am free to go without having to wait the 20 minutes observation thing, yes I am a frequently flier now, they remember my name, kinda like Cheers, except without the peanuts and stale beer smell…  I will do what I have to keeping myself on track…  For now I am homeward bound…  Have good color and feel pretty good, just a little sluggish still from the benadryl, this too shall pass.   So of course nap time when I get home.  The boy cats are not napping with me today, so I have the couch all to myself, not a bad thing… 

Time for my monthly doctors appointment and chemotherapy on June 27th…   My CA-125 dropped again by about 200 points.  Was hoping for a much higher drop, I will take it though down to 2800 going in the right direction…  Today we talked about whether or not to reduce Carboplatin by 10% because it is hitting my red cells so hard, my platelets are up to 207,000 so that is good, nicely rebounded again.  I have had to have transfusions after each of these treatments of late.  My feeling is my numbers are dropping so I don’t want to mess with what seems to be working.  My doctor agrees so we will continue with the same treatment of Carboplatin, Doxel and Avastin.  Actually they are giving in reverse order than I have them listed…  One of the ladies receiving treatment commented on my blanket that I always have with me.  It is very colorful and keeps me warm during my treatments; I have a tendency to be cold...  My daughter and I picked it out of a bunch of blankets because it reminded both of us being on the beach.  It looks like a beach blanket and we love beach days…  So why not have something with us that remind us of something we love and bring up wonderful fun memories.  A young girl that I wrote about a while ago made my blanket.  She makes knot blankets, takes them to her church to have them blessed, and then donates them to various healthcare clinics.  That set off a number of conversations about blankets, beach days and such creating laughter and fun conversations…  The infusion itself was uneventful which I am always grateful.  Off to get my monthly chest x-ray, I get one every month to monitor the fluid that is between my lungs and lung lining.  It is stable and not changing, which is a very good thing…  When we got home we had a bit to eat and then off to dream land for me…  <Smile>  I’m good for a 1-2 hour nap… 

Over the next week is the oh what can I eat or sounds good to eat…  So we stock the house with items that allow me to eat every 2-3 hours without a lot of fuss.  This really helps in how I feel overall and helps me rebound in a week.  The first 2 days after chemo are steroid highs plus I have the rest of my Emend to take.  Over the weekend eating frequently small meals keeps my stomach busy so I feel pretty good.  Saturday after chemo is my sleep on and off day, when I awoke from my afternoon nap I found my brother (Jerry) and sister (Barb) working in our yard, helping to get it ready for the summer.  Lynn and I are so lucky to have their help.  It is really a huge help, one that I am grateful to accept.  By Sunday afternoon (after my afternoon nap of course) I am feeling more like myself so phew made it through another chemo weekend…  And with all the work Barb and Jerry did in our yard it looks wonderful..  Thank you!!!  What’s left to do is to enjoy it which we all will…

On the 9^th I have my 1^st blood test and yes on the 10^th I received a call from Laurie, my hemoglobin and white counts are good.  My platelets however are down to 26,000.  Dang…  Okay I know the drill, careful around sharp objects, if I am bleeding go to the emergency room and yes I having to have daily stat draws to monitor my platelets when they are starting to go up.  Well this week I got to my lowest 17,000, on Friday.  I am bruising easily, so I have to be careful.  I don’t feel bad, just bruise easily, I have to have stat draws over the weekend, grrr.  I guess the only thing that is a pain is I feel like a pincushion, what’s a girl to do...  The good news is I didn’t get a call, I’m thinking finally on the upswing with my platelets, though my next complete blood draw is the 16^th.  So I have that done.  Yes I get a call on Tuesday 17th, the good news my platelets are on the upswing finally.  My hemoglobin is at 7.9, again I am not feeling bad so we take the wait and see approach.  I am eating well, so I think I will be fine. 

Lynn and I are signed up to take sailing lessons with Seven Seas Sailing.  Lynn has been sailing since she was like 8 and loves it.  She owned her own sailboat for a number of years and raced.  When she turned 30 she sold her boat and bought a home.  Taking these classes once we are done will allow us to rent their sailboats for day sailing.  How great is that.  I have been on a sailboat a handful of times MANY years ago and loved it.  I found it to be relaxing and fun.  So when Lynn suggested this I thought this is great…  We can do this together and have great fun.  Lynn can sail the boat and when it is time to do something I will have an understanding of what she is doing and understand what I am doing…  Renting the boats is great because you don’t have the up keep, docking fees and such…  I love this idea and this is something Lynn has talked about for awhile…  On July 12th we had our first lesson, you start with a 2-hour classroom lesson going over the rules of the water and the various law enforcement personnel that you can encounter.  Learning various knots that you must know and parts of the boat and sail.  Our 2 hour class lasted 3 hours, needless to say when it was over I felt exhausted <laughing>.  We both worked a full day then had a 3 hours class.  That last hour I caught myself nodding off…  Don’t get me wrong the instructor was very good and interesting.  It was simply a long day…  <smile>.  When we got home Barb and Jerry were at our home again trying to wrap up an outside project with the bricks in our yard, sealing them and cleaning up areas close to the house that needed some attention.  We are having my mom’s family picnic here the 1^st Saturday in August, so Barb is on a mission.  Barb brought over our niece’s puppy Jacqs as Katie was working.  That was a nice surprise… This little puppy is so cute, has a great personality and thinks all 2 pounds of him makes him an alpha dog…  <laughing>. 

Our next class was dockside training where we start to apply what we learned in the classroom to the boat itself…  We had this lesson on July 22^nd in the morning.  We brought our coffee and away we went…  We had a great instructor, he was so patient and taught us how to put up the sails, take to boat out of the slip, get a feel for the tiller, or steering the boat, and bring the boat back into the slip.  To be honest that was one of the things that made me very nervous.  It was not as bad as I thought it would be…  We will have to check our calendars on when we can do our first on the water lesson.  I am looking forward to that being on the water and actually sailing the boat, how exciting.  I think they said if you pick up everything quickly you could be certified after only 5 classes.  I am looking forward to our 1^st on the water lesson.  We will check out calendars and see what day will work…

Peritoneal Cancer Journey Phase XVII

It is May 30^th my next Doctor’s appointment is here and I have to admit I am a bit nervous.  Not to sure where we are going from here.  I am putting out there that my CA dropped significantly…  and guess what, my CA-125 did dropped!  Yippeee!!!  By over 400 points to 3,034, phew, big sigh of relief…  Of course I was hoping to drop by 1/2 …  I am very happy with over 400, definitely in the right direction.  Great Birthday gift for me…  My birthday is May 31^st…  my steroid high day…  We are going to stay with the same treatment this go around.  I will have the Neulasta® shot on Thursday.  My white cells are doing good and my platelets really jumped up to over 241,000 in like 10 days, my happy pump out the blood dance worked <smile>…  My hemoglobin is good too so everything is a go...  My exam was really positive…  So off we go to the infusion lab… 

My Chemotherapy infusion goes uneventful which I am always very happy with.  We started with the prep drugs (the benedryl, steroids, and I take my E-mend) to prevent reaction and minimize nausea.  Then we proceed to Avanstin, then to Doxel (looks like red coolaide, which is what I call it…), then to Carboplatin.  During this I read a book for a bit, napped a bit and listened to my momma jams play list.  It was over with pretty quickly or at least it felt like it didn’t take to long.  When we got home I had lunch then napped the rest of the afternoon away.  That is a good thing.  I find it interesting or maybe funny how tired you get when you have a treatment, just sitting around.  So the boy cats and me nap the afternoon away…  Not a bad thing.

Because my red cells took a big hit the last go around, I have an extra blood draw that we didn’t plan for on June 11.  We planned on going to Detroit, MI for UNITY Peoples Conference that week.  We had to find a Quest Lab there so I can get my blood draw done on Monday.  Lynn has a cousin who lives just outside of Detroit so that worked perfect.  So she helped us find one and I scheduled an appointment.  We met up with cousin Deb and her husband for lunch on Sunday and caught up, which was so much fun…  On Monday I had an appointment with Quest.  The tech I met, Desiree was wonderful.  The coding is different there then it is here in the WNY area.  So she had to spend 45 minutes with me to clarify what tests my doctor was requesting.  We talked about why I was in Detroit and parted with a hug.  It was some how very comforting to me feeling that I am good hands.  During the conference I received a call from my chemotherapy nurse Laurie.  When I answered my cell phone I must have said “uh oh” out loud… laughing…  She heard me and said did you just say uh oh…?  I said yes I did, when you call that means one thing, my numbers are low…  She said, yes and the Doctor wants to you to have more lab work tomorrow.  She said we know you are out of town and we tried to get him to wait on the blood work, but alas his comment was “there is a lab there she can go to”…  laughing…  Anyway my hemoglobin is down to 7.4, which it has been before and my platelets are down to 26,000, a bit lower than last time.  My white cells are doing great.  So that is great news to me, I am not susceptible to infections, just bruising and bleeding…  She asked if had the contact information for the lab I went to, since we know you are out of town.  Yes, I went out of town without telling them…  That normally is a non-appointment week so it didn’t occur to me to say anything...  We drove to Detroit as it only takes about 5 hours and the conference sounded fun with speakers that I really was interested in hearing.  I did have the phone number and address with me for lab we went to.  So I gave it to Laurie, she said their faxed number would be on the voice mail.  So she faxed my new order to the lab.  So Lynn and I ventured back out to the Quest in Center Line, MI and the Tech Desiree was there, I smiled and said I am back…  Smiling.  She said I see that and I did receive your doctor order and am all ready for you.  That visit took like 2 minutes…  I did have to have blood work again before we left Detroit; I had to go on Thursday…  My platelets were down to 24,000 and my hemoglobin was down to 7.4…  Okay that is really low.  Lynn is now worried that I would have to be in Detroit longer to get a transfusion and that wouldn’t work well as Megs 21^st Birthday celebration dinner was planned for Friday evening 6/15… Can’t miss that, that would be awful…  So Thursday Bright and early we were at Quest for another blood draw.  I am a frequent flier too now in Center Line, MI.  Desiree was wonderful, very re-assuring and calming.  She is the only Tech in that office and it runs without a hitch.  She is very conscientious, efficient and caring.  Driving home on Friday morning I received another call my platelets are down to again now to 21,000 and hemoglobin is down to 7.2…  Okay I will be going for a transfusion next week because my hemoglobin is not going to rebound as fast as my platelets will.  They already faxed an order to the lab I go to on Saturday morning.  I was able to get a 10:15ish am appointment. Perfect timing… 

We had Megs 21^st Birthday celebration at one of our favorite restaurants’ the Martini Bar on Elmwood Avenue.  There were 9 of us… My mom, me, Lynn, my 2 sisters,  Gail’s husband and close family friend Molly.  The restaurant knew it was Megs 21^st Birthday celebration so they asked her what she wanted to drink and promptly asked for her ID… She was VERY Happy to oblige…  <laughing>.  She tried 2 different Martini’s before she found one that tasted good…  Dinner was so much fun, lots of talking, laughing, and reminiscing…  After dinner Gail, Molly and Clark took Megs out partying…   Megs did really well, not to hung over the next day…  It was a perfect ending to a great week of vacation, minus the frequent visits to the lab…  Over all a Great Week…  Love those days, weeks… 

Peritoneal Cancer Diagnosis Journey Phase XVI

Phase XVI

On my next doctor visit we brought a couple of cases of my new favorite supplemental drink to the Infusion Clinic for people to try.  We brought the two flavors that I love.  The month of May has 5 Tuesday’s in it so this month I will get Chemotherapy twice.  Oh boy… 

My appointment is on May 1^st normal time so Lynn and I bring all our stuff for the day plus the two cases of Orgain… Lots to carry…  My numbers CA were disappointing to say the least.  Damn CA-125…  I try to not get discouraged by the numbers it is hard…  I feel good and that is what I gauge my health on, not the numbers.  Well I try real hard to focus on that.  Today CA-125 increased now up to 3499…  I will be focusing real hard on how I feel and not the numbers.  Yes, I will admit that increase caught me off guard.  It is back to where it was back in August 2011.  Sigh this is probably why I have not written anything on my blog in 4 weeks.  Simply letting my emotions, thoughts run their course and allow me to stay focused on treatments and life.  Today we decided to switch the Cisplatin and go with Carboplatin, yes, no one is comfortable right now with the latest number.  Seems when we switch I experience a nice decrease.  I am good with that…  We are doing the Avastin, Doxil, and Carboplatin…  We discussed why I was taken off Carbo to begin with.  I said because my white and red counts take a beating on Carbo, so we thought cisplatin should be as effective and it would give my blood a rest.  If my next visit does not show an improvement in my CA numbers we will move to different drugs in my doctors bag of tricks.  I am good with that and feel good about the treatments so off we go.  The up side with this infusion is its quicker then having cisplatin.  So we get some of our afternoon back that is cool…  We bought lunch preparing for the longer treatment, which is okay because we took it home and had lunch there.  I took a good long nap…   It is tiring sitting around getting infused…

The next couple of days are, yep you guessed it my Steroid high days so I worked…  That really helps me, keeping busy and not focusing on those damn CA-125 numbers.  This go around the treatment tuckered me out; I slept a good part of Friday and Saturday.  That is a good thing as I did get a Neulasta® shot on Wednesday as Carboplatin always knocks the hell out of my blood counts.  So we decided to help bolster the white cell count with the Neulasta®.  That makes you achy…  I try and time that shot with my down day on Friday and Saturday so I rest a lot.  When I woke on Friday, I was a bit achy so I took an ibuprofen, which helped take the edge off…  Saturday too same thing, took an ibuprofen every 4-6 hours and it got me through the day, that and eating every 3 hours…  Keeps my stomach busy so I don’t have to take any other medication for sickness…  That is really good in my book; I am fortunate we have this down to a science… Eating every 3 hours and Miralax every day…  Sunday I am on my upswing and starting to putter around again…  Next weekend will be busy and I want to well rested and ready to go…  It is that time of year…

On Saturday one of our oldest nephews graduated from UB with a dual BS in Chemical and Bio Engineering degrees…  That was sooo much fun to see Mike graduate after all that hard work…  Right after his graduation one of our younger nephews made his 1^st communion so we drove to St. Thomas in South Buffalo for that.  The timing worked out very well we made it to both and I took lots of pictures… SO much fun.  After the 1^st communion we are a celebration for Mike’s graduation at a local bar and restaurant we all go too…  Took lots of pictures there too…  On Sunday we had the 1^st communion party and Mothers day… 

On Sunday morning I woke up at like 7 am…  Really, I am thinking, now what do I do, everyone else is sleeping.  So I went downstairs and downloaded all the pictures.  I put Mikes graduation and Andys first communion into slide shows and attached music to them.  They came out great, next I have to figure out how to copy them to DVD’s…  When Megs woke she bounded downstairs and came into the Florida room where Lynn and I were having coffee.  She said I know you said not to get you anything because of the coffee maker I bought, but when I saw this I had to get it for you…  The mother’s day card was so cute.  It was a little girls’ toothless smile…  Inside she wrote a note that still brings tears to my eyes…  “You are the strongest woman I know!  You are an inspiration to so many people!  When I grow up I hope I’m half the woman you are!...”  Yeah I am tearing after I read that <smile>.  With tissue in hand I opened the box she gave me.  Inside is a charm with a ribbon of hope, inscribed on the charm is the word “Believe” on the back “Love You”.  Oh yeah by then I’m sobbing, needing the whole box of tissues <laughing>, not just tears of joy, but sobs of joy…  Megs recorded me opening the gift and she recorded like 15 seconds of it, cuz she was crying too and we laughed that she didn’t want anyone to see she was crying with the camera shaking so she stopped recording it…  It was so thought full, there is a picture of it on my blog…  I wear it every day, except if I am doing yard work of course or something like that…  Whenever I look down and see “Believe” I am reminded how precious each day is and that I am here doing my thing, I am very Lucky and it is all good!!!

The 1^st communion party was a lot of fun…  Andy was sooo cute, he read each card, we forgot to print our names on the card and not write them out, oh well, we will have to remember that next time we give a card to him… 

On Tuesday I received a call from the infusion clinic… Yes, that generally means something is out of wack from my 2 week blood draw.  My red cells are not doing so well.  My hemoglobin is down to 7.4 (should be 12-15) and my platelets are 27,000 (should be 90,000-150,000).  Laurie asked if I am tired and bruising easily…  I said, I feel okay, now that she mentioned it maybe I am a bit tired.  <smile>  She said the doctor is recommending I get a transfusion, which I agree.  My hemoglobin has been 7.4 before but my platelets have not been that low before.  So that concerns me.  I planned on taking Thursday and Friday off, so I arranged to have the blood transfusion on Friday.  Since I planned on having a day off that day I will bring only fun things to read and no work…  I opted for the 7:30 am appointment… This way I am home by 2-3 ish… Still have some of afternoons and I have a baby shower to go to in the early evening…  Lynn is having some people over for dinner so I can make sure the house is ready for guests before I leave… 

On Friday I arrive at 7:30 am with coffee, breakfast and snacks in hand.  I will get lunch there, which has been good in the past…  This will be my I think 6 blood transfusion since this adventure began.  The nurses know me there now too, not that they are happy to see me back…  It is what it is…  The blood transfusion goes just fine and I feel better and have nice color in my cheeks...  The last two blood transfusions I have felt better after the 1^st pint.  After the 2^nd one was done the nurse disconnected me and said you may go when you are ready.  You are a frequent flier here and haven’t had any problems in the past…  I have become a frequent flier at a number of medical establishments…  My lab, I am there every 2 weeks normally, right now I have to go more often with my doctor watching my platelet count closely.  When I am at the lab I sometime get the newbie’s doing to blood draws.  I don’t mind, I have good veins, I have my mediport to thank for that…  The one newbie attempted a vein that really shows itself in my left arm…  The techs I always get generally don’t go to that one; they draw from the one next to it that you can feel, not see.  Well the newbie got a lesson, she tapped into the vein that showed itself nicely then the needle fell out of the vein.  I like to say she stabbed it with the needle and it went Ahhhhhh and shriveled up <Grin>… She was so apologetic…  I told her it was okay, it’s not the 1^st and it won’t be the last…  The next newbie I got, she was eyeing that same vein.  I said I wouldn’t if I were you, that one will shrivel up when you stab it…  Everyone here always goes to the vein next to that one you can't see, but you definitely can feel…   She looked at me funny, and the tech that was working with her say, she is a frequent flier here; to me she said you are here what every two weeks.  I said, yes I am…  < laughing>…  This newbie took my advice and avoided the vein that teases them…  Smart lady… plus when she drew the blood I didn’t even feel the needle, very good job… 

 Well I got another call from my doctors’ office; my platelets are down to 26,000…  Got the in case of an emergency to directly to the emergency room, yes I will… Okay still no running with scissors or playing rugbie…  I have to go for more blood work on Monday…  And guess what?  No Call on Tuesday… Yippee my platelets are finally on the up swing… Go bone marrow, pump out those HEALTHY red cells…   Doing the happy blood dance…  Gotta keep it pumping, don’t want to be delayed for my next visit… Have blood work on Tuedsay May 29^th for my doctors’ appointment on May 30^th…  Gots lots of ground to make up here… I am feeling really good and very alive…   

Peritoneal Cancer Journey Phase XV

St. Patty’s day weekend was so much fun with family celebrating Christine’s 60^th birthday…  The Food was wonderful as always… Can’t go wrong with Curly’s, such an awesome restaurant…  The service was good, drink tasty, had a couple of glasses of wine (Chardonnay) one of my favorites…  Yes I can be a bit whiny <smile>...  I had salmon so I thought white wine would be good…  Everyone seemed really to enjoy themselves.  Christine had a ball…  Our family filled fun weekend started on Friday, meeting the Cape Cod Tranchell’s at the Anchor Bar for wings, Megs said don’t go to the Anchor Bar, go to Duffy’s, they have better wings.  After dinner it was agreed that the Anchor Bar was not what the Cape Cod Tranchell’s remembered.  It has gone through a few owners since it’s original chicken wing creation…  Next time it will be Duffy’s…  On Saturday we had the Party…  It was so much fun…  Can you believe I forgot my camera!  Those that know me must be shocked...  I didn’t think of it until we got to Curly’s and Jesse said, “I have my camera”… I looked at Lynn laughing and said I didn’t even think of our camera…  Better not to have forgotten anything else for the Party.  After the party the cousins all met up at the Hamburg Tranchell’s for a get together.  Lynn text Megs about it so, she could join them after work, all the younger generation had a camp fire.  Which she did and that worked out great because she gave Jesse a ride back to our house.  Lynn and I hung out with the baby boys and their dad…  We were having everyone at our house Sunday for breakfast so we could see everyone before they ventured back home to The Cape and New Jersey.  So we stayed home to prepare the breakfast casseroles for tomorrows breakfast.  The baby boys woke about 5-6 am for their 1^st feeding.  That worked Perfect as the breakfast casseroles needed to cook for an hour each, so we got to spend quality one on one time hang out with the baby boys all by ourselves from 6 to 8…  They were so talk-a-tive…  They did take a quick nap.  After about an hour I heard cooing, I walked in the living room to see who was waking up and there was Joe pulling on Jason’s hand and PJ’s as if to say HEY WAKE UP… I’m awake…  It was so cute…  I had to work the get Joe to let go of his brother so he could sleep…  I brought Joe into the kitchen with me to finish getting ready for breakfast while we chit chatted…  He is such a flirt with his big eyes and easy smile…  Breakfast was all ready by 8am…  When everyone arrived it was time to dig in…  The last of the guests left about 11:30ish and we cleaned up…  It was really so much fun and tiresome.  We crashed I think at like 8:30pm and I slept like a log.  I know I slept soundly as Monday I was full of energy again. 

With all the drug shortages and stress that goes with it when it is your drug in short supply, compounded with what is definitely a strong stance on women’s healthcare by some, I have been thinking a lot about our healthcare system and how it operates.  It is obviously based on a capitalist market.   Profit driven and such…  There is nothing wrong with making money.  There is something wrong with making a profit at the expense of a person.  There are some things that maybe should just not be so profit driven.  Some things obviously need government intervention (regulations) for the overall good of society.  Hence the division of opinions on what that means... 

Well in my searching to find the ingredients between Doxil and Lipodox I did find a table that showed a comparison of the two.  It is from the American Society of Health System Pharmacists (ashp.org).  This is a member organization representing Pharmacists that work for Hospitals and Health-care organization.  So I was happy to find this information.  The link to the table is under a separate page on my blog labeled “Table Comparing Active and Inactive ingredients of Doxil and Lipodox”.  I don’t see any difference in the drugs.  None…   I did notice the other day that the FDA has updated the Doxil shortage with the company handling the importing of Lipodox.  It should be covered by insurance companies, if it isn’t that is probably because the FDA won’t say it is a comparable drug.  I hope and pray that isn’t the case.

It is April 3rd and time for my next Doctor appointment and Chemotherapy appointment.  My appointment is at 8:00 am…  normal time, yippee.  My CAT scan is the same, no evidence of active disease.  I am stable, phew, yes big relief and we thought that so…  That is good news, I get nervous before my appointments after a test…  That is to be expected…  After all these months this feels normal to me.  I go with it…  My CA-125 number went up to 2673 from 2342.  Sigh it is considered stable.  Weird huh, it goes up 331 points and we don’t blink, simply sigh…  <chuckling>  I mentioned I had the stomach flu that lasted 24 hours a couple of weeks a go, don’t know if that could have affected my number or not.  My doctor just looked at me and proceed to discuss that he is very comfortable with the regimen I am on, that sometimes patients want to change up the drugs in an attempt to get the numbers to change.  We discussed what drug regimens I have been on and he missed that I have only received 4 Avastin infusions; today will be my 5^th infusion of it.  When I mentioned that and he verified it in the chart, he seemed to relax, if that is the right word, or not concerned maybe is better, <smile>.  I said, I am comfortable staying with the regimen for the recommended treatments, which I think is 6 or 8.  That I was uncomfortable switching drugs for the sake of switching drugs in hopes of a drop without knowing that we should switch.  He agreed that made sense switching at this time maybe premature.  That I certainly can experience a significant drop completing this cycle.  So Cisplatin, Doxil, and Avastin it is.  The rest of my blood work looks good...  So off to the infusion clinic we go with our coffees in hand and snack for anyone to part-take in and conversations… 

Oh!!!  I have to mention that I finally tried a supplement drink that my daughter Megs and her friend Meghan would drink as a meal replacement thing when running late for class in the morning when she was at Brockport.  It is call Orgain.  A doctor came up with it after going through chemotherapy himself and was appalled at the taste of the supplemental drinks on the market.  So he worked to come up with a drink that tastes good, low in sugar, high in all the stuff you need it to be high in (like protein, vitamins, antioxidants, etc).  It’s Organic, gluten free…  I tried the Creamy Chocolate Fudge, gotta love the name, how could it not taste good!…  It tastes GREAT and I CAN DRINK ALL 11 oz and ready…  I like it…  No kidding…  I also like the Iced Café Moca…  Yum.  Even my “Oh my I don’t know what I can eat days”, which Lynn just loves, yes dinner decisions are so much fun…  It’s where I am eating something every 2 to 3 hours to keep my stomach busy, I can drink this, enjoy this and I feel better.  I noticed my energy level is better and I feel better quicker…  I will be the first to admit I am very luck, I bounce back from Chemotherapy; this stuff helps me get there better…  Of the other drinks I can choke down Strawberry Boost and most times I cannot finish the 8 oz bottle.  If I don’t chug it all down the 1^st few gulps then I have a hard time drinking it after that, usually I throw it out, don’t want to start a gag thing...  Know what I mean…  Don’t get me wrong Boost helped.  With Orgain I like it and I finish it, it does not taste vitaminie.  It is well worth the extra pennies more it costs to buy it and gratefully we can buy it…  If I were to cost out what I don’t finish with boost and what I do finish with Orgain, I think it costs the same… 

I have been telling everyone I know on chemo or having trouble eating for whatever challenge they have about this drink…   Here is the link to it if anyone would like to check it out…

http://www.drinkorgain.com/

In the WNY area Wegman’s has the most reasonable price I have found…  Though with me telling everyone about it, it seems to be flying off the shelves <laughing>…  My daughter Megs went to Brockport to visit friends and bought me a case of the Creamy Chocolate Fudge, because we have been having a hard time finding it here, she said I should keep it to myself, alas that isn’t going to happen <smile>… Again with a name like Creamy Chocolate Fudge who could not love this drink…  <laughing>  I love chocolate, then again not many woman don’t…   A co-workers son is going through chemo too and his favorite flavor is the Ice Café Moca…  I am not a fan of vanilla, however if I add berries to it or a banana it would be marvelous…  Just have to drink it at home and not grab it out of the fridge and off I go…  Orgain does not have to refrigerated, but it is best chilled to drink…  So buying a case or two is fine as it will last just fine…  I throw 4 or 6 in the fridge and away I go...  Can you tell I love this drink…  <smile & twinkle & wink in the eyes>…