Even if you are finally "cancer free" it will always be with you mentally

Sunday, June 17, 2012

Back to Work!

This is why I'm a horrible blogger...I should have written weeks ago but I'm just not consistent.  So much has happened, in the positive direction.

My last of 6 chemo treatments was on May 1.  As usual, it was a good 3 weeks before I started feeling better from that.  My blood levels took a while to get back up to normal, there was talk of a possible platelet transfusion, but my body worked on its own to get those numbers back up.  The fatigue was certainly cumulative...that's been hanging around for a while.  At this writing, though, I am feeling stronger than ever and getting better every day.  I've actually done some shopping, leaning on the cart and my cane if no handicap cart was available.  I'm stronger than I was but not as strong as I will be!

I finally made the wig appointment and found one that was so close to my cut and color that its difficult to tell its a wig!  They look so natural these days.  I didn't have good hair before, but I liked the style and color I had, so the texture of the wig actually is better than what I naturally have.  I may wear a wig for a long time...might have to anyway as one of the few side effects of my maintenance chemo drug is hair loss.  But I'll explain that in a bit.  I ordered another wig in a little different style and color.  And I also got some of those brightly colored hair extensions/swatches for a funky look!  Its gonna be fun!

My last CT scan again showed no evidence of anything remotely resembling cancer/tumors.  My CA125 is steady at 10.3. (normal 0-35)  What this means is right now, I am a survivor!  I can't be any more thankful for everything....from my doctor to my friends and family, my employer and of course, to whatever higher being exists. 

Since my treatment was part of a clinical study, I will be receiving a "maintenance" drug every 3 weeks for quite some time.  The drug is Avastin and was part of my chemo cocktail, but will be used alone for the remainder of my treatments.  There is currently no limit on how long I will receive this drug.  I will also receive regular bloodwork and CT scans, to keep an eye on anything that may pop up....hopefully nothing!  The Avastin has few side effects.  Nothing debilitating or that can't be taken care of some other way.  Though hair loss is one.  So I may be semi bald for quite a while.  My hair is growing back in a funky way...sort of a mohawk from my front hair line to the nape of my neck.  But my sides are very thin and not really growing much.  Thus the wig may be a long term addition.  Certainly makes it faster and easier to get ready in the mornings!

Speaking of getting ready....I'm returning to work tomorrow, June 18.  I am a little nervous...mostly about the commute.  I still can't walk long distances without resting a bit, but cabs are abundant in downtown Chicago and my distance so short, it shouldn't be too expensive.  Getting on the train may be a bitch, but I can ask for the handicap ramp to be lowered since getting up those high steps will be almost impossible right now.  But I have improved in that area over the past month or so. 

I hope my cancer brain hasn't forgotten too many of the details of my job.  I think once I'm back in the swing of things, I should be fine.  Hope they still need me!  I will have hundreds of emails to go through, logins and passwords to change/update, new people to meet, new procedures and changes to tasks...and in addition, I have to renew my regulatory status which expired in March.  The test for that is June 25.  In spite of all that, I am looking so forward to going back.  I've missed my co-workers and my job.

I was able to get to my home town for a few days and see my mom, sister and niece.  It's like a small reunion as my brother comes in from DC as well, so we 3 kids are together with our mom and of course, my beautiful little niece (my sister's daughter).  I was able to let off some steam that had been building the last 5 months and my mom was supportive.  My sister had asked to come help over the past months but since my significant other was here, there really wasn't any need.  But being stuck in the house with each other for so long was stressful and I certainly needed the time away.  He didn't seem to need time away from me, but I came back fresh and renewed, so it was a good and necessary trip.  I couldn't stop hugging my niece...I just love her so much.  And my brother...he was very supportive and funny (via text) during my chemotherapy.  It was good to hug him too.  An additional joy was meeting my brother's sweet lady, Rachel.  It was just good times.

So I move forward.  Getting back to work will be a trip but I will enjoy the ride.  I'm pushing the cancer to the back of my mind but as my blog title never really goes away.  But its time to let it go a bit and enjoy my life that has been put on hold for the past months.

Tuesday, May 15, 2012

Catching Up

I have been so remiss in my blogging and I apologize.  I know some of my friends/family come here for updates on my progress.

I had the blood transfusion, it went relatively smooth.  I can't say perfect...they used a short needle in my porta cath, which apparently slipped out slightly, causing blood to go under my skin instead of into my vein.  I didn't notice until I saw blood seeping from the site.  They stuck me again with a longer needle and the transfusion was able to be completed without any further incident.  It did make me feel better, though I can't say I felt the best I ever did throughout this entire affair.  But it satisfied the blood-count people (lol doctor and nurses).  The blood under my skin left quite a mess, the entire area measured about 4 x 4".  It didn't hurt, though, and my doctor said that though ugly it would go away eventually, which it has started to do.

Then came time for my blood work prior to receiving my last treatment.  Gah...another problem!  My platelet number was too low to receive chemo.  So we waited about 5 days, checked the numbers again and happily was able to receive my last treatment!!!  Yay!  Now onto the business of healing, rebuilding and strengthening!

The fatigue hit as usual, but not much body pain.  I spent the first week or so in bed, just sleeping and resting.  My bloodwork was down as expected.  But yesterday it was really down again, my hemoglobin was down at the "need a transfusion" level and my platelets were down even more.  I get it checked again this Thursday and if it hasn't improved, I will need another transfusion.  I am going to think positively that my levels will go back up on their own.  I'm eating well and getting rest.  But my body will catch up...even if it needs a little help.  None of this is unusually bad.  Truthfully, compared to what others go through with chemo, I think I've been pretty lucky.  

One of the exciting things about the past week is that I was able to drag myself into the Wellness House in Hinsdale, Illinois and get a wig!  The American Cancer Society provides a free wig to cancer patients.  I haven't worried about my baldness through all of this but in preparation for going back to work, I know I needed to get a wig just to feel better about myself commuting back and forth in downtown Chicago.  I was able to find one that was pretty close to my hair style and color prior to losing my hair but the wig looks so much better than my real hair!  I didn't really have nice hair to begin with.  Wearing the wig will become a new lifestyle for a long time!

So I'm just waiting for Thursday to see if my blood levels come up.  Hopefully no transfusion.  I have to get a CT scan too, prior to my next doctor appointment.  I'm planning on a return to work sometime in June.  I haven't talked to the doctor about it yet, but hoping that will be the plan.  Onward!!!! 

Friday, April 20, 2012

Blood Transfusion

Thursday is bloodwork day (yesterday).  My blood number pattern throughout my chemo has been really good, I actually start to recoup the week following chemo, rather than week 2. My numbers last week were a little lower than my pattern, but we fully expected them to be back up yesterday.  But nothing is ever easy.  LOL  The chemo is finally catching up with me.  I've been complaining about fatigue.  Alot.  To the point that I just felt I was being a puss.  It frustrates me to no end to feel like this but it was just not getting better.  I literally cannot move from room to room without losing my breath and sometimes even feeling like I was going to faint.  For the second week in a row, Jack has had to wheel me into the office for my blood draw.

Yesterday my numbers were very low.  The only good thing about this is that now I don't feel like it was just me or just in my head.  They were low enough that I am going in this morning for a blood transfusion, 2 units.  Thankfully this is not uncommon. (No one likes to hear how uncommon a situation is, now THATS scary, especially if its uncommonly bad)  Chemo just takes such a toll on your body, sometimes your body can't keep up.  Its working so hard to rebuild between treatments, which results in the fatigue.

I've never had a blood transfusion, I'm not scared, but I am fretting just a bit.  The nurse did say that I will actually start to feel better almost immediately, like when the transfusion is complete and I'm ready to go home!  I am looking forward to that.

Next Friday is my last treatment.  Then I can really get to the task of recuperating, gaining my strength and stamina...but unfortunately that is a slow process.  It can take 6 months to a year to get to where you were before chemo...maybe.  One of the many things I have tried to learn throughout this is patience, baby steps...I'm not good at it though.  Oh well...I can focus on the fact that I'm beating this.  That is such good news it will carry me through the remaining challenges.

Friday, April 13, 2012

Will I ever get back to normal?

After all I've been through since January 4, and so close to the end, it seems silly to complain.  And of course, I am going to be a survivor.  But its at the point where I can't imagine I will ever feel good again.  I got so spoiled during the first half of the chemo treatments, getting my strength back within a week or so.  I literally cannot get from one room to another without feeling like I'm going to faint.  I get so out of breath.  If its anything like after the 4th treatment, I will only get enough stamina and strength back before the next treatment to walk into the office on my own and drop into a chair to get hooked up to the poison.  In my mind I know (well I hope) I will regain my strength and be back to my old self, but when I feel so drained, its just hard to imagine.

Next visit I'm going to ask how long its going to take after my last treatment before I can actually walk any distance and not expire.  LOL  I've already started to worry about my commute to work.  Granted I could drive to work for a bit, but that isn't a long term solution, as its expensive to park in downtown Chicago plus the drive is just crazy.

Another issue is that the chemo has really affected my left knee, which was replaced a while back but has been giving me problems for a while.  I walk with a cane but the chemo has made it worse.  I'm hoping that once the chemo is out of my system, my knee will go back to the condition it was in prior to the treatments.  I can handle that.

Oh well, I shouldn't be complaining, but sometimes I just have to.

Wednesday, April 11, 2012

Almost There...

Haven't written in a while, the 4th chemo treatment really knocked me for a loop, so once I could get around a little I was trying to do some things.  I hate just sitting around or lying in bed.  So my goal is always to get myself to my jewelry bench or glass bench where I can sit and do something constructive but not have to move.

I had treatment #5 last Friday.  Saturday I felt so normal and good...didn't even feel the fatigue that had been plaguing me since #4.  Easter Sunday was good too.  But I started feeling bad early Monday joints were hurting so I stayed in bed all day Monday.  Tuesday, I had another headache from hell...I don't know if its sinuses or a migraine or a rogue side effect from the chemo since I've had a couple since my treatment started in January and I'm not prone to such excruciating headache pain.  I don't have a history of sinus or migraine headaches, but as I am well aware at this point, chemo can bring out stuff that you've never had before.  Thankfully, the headache is gone today.  And I'm surprised that my joint pain is not bad either.  I usually still hurt this soon after a treatment.  But hey...I'll take it.

What is really getting me, though, is fatigue.  It has now hit big time.  I can barely walk from my bedroom to the kitchen without losing my breath and feeling dizzy.  Tomorrow is supposed to be bloodwork day, so I hope I can get downstairs to the car and back.  It will be another wheelchair day...Jack will have to get me into the office via a wheelchair like last time. 

The best news is that I have one treatment left.  Then its getting my strength back so I can return to work.  It has been a long and sorta lonely time.  My boyfriend and my dog are great, but I crave interaction with others besides my caretakers.  The isolation, though, played a huge part in my good health during chemo, as I was not exposed to all the germs, bacteria and viruses that I would have encountered had I been working all this time.  Chemo just annihilates your immune system and the fatigue prevented any kind of activity anyway. 

I can't find words to express all of my feelings...relief that its over, joy that it worked, gratitude for my doctor and insurance, love for my friends and family, and most of all, thankfulness to the greater being that brought about all of these miracles.

Friday, March 23, 2012

Major Fatigue

By the Thursday following a chemo treatment, up until now, I've pretty much recovered from the joint/muscle pain and the fatigue...I have been able to walk into the doctor's office on my own for my weekly bloodwork.  Well, yesterday I wasn't so lucky.  The pain had almost completely subsided, but my fatigue was immense.  Taking my shower was torture...walking down to the garage just about killed me...I could barely catch my breath.  Fortunately, there are wheelchairs at each entrance to the hospital--Jack had to wheel me in for my bloodwork.  There was no way I would have been able to walk in myself.  Once we got home, I could barely make it up to the house.

The fatigue is cumulative...if I'm like this after my 4th treatment, what will it be like after my 6th and final treatment???  I realize that since I was in bed for 3 days with the pain that my stamina was low, but geez...  My numbers did back up what I was feeling, so at least I know I'm not imagining it.

The neuropathy is worse and painful too.  That also is cumulative.  My hands and fingers don't hurt too much from it, but my feet and toes do.  Arghhh!

So yeah, this is a complaint post.  Gotta let it out somehow...thats one of the reasons I started to blog--so I don't have to complain out loud.  People get tired of hearing it.  Today I plan to move around more and maybe visit my studio for a bit...

On the bright side, I'm still reeling from the good news I received last week.  Though its tough going through this day by day, I know the end of the treatment is coming and I'm going to be OK.  I will be back to work, back with my co-workers, and enjoying the little things I love about Chicago...

Friday, March 16, 2012

Good News

Yesterday was my doctor exam, which happens every three weeks, before my chemo treatment.  I had had a CT scan about ten days ago and got the results yesterday.  The scan shows no evidence of the cancer!!!  The spots on my lungs and abdomen, which were the reason chemotherapy was begun, were gone!  How about that for super news!  Even my doctor was excited about the results. It is every cancer patients' dream to hear those words.  Even though I had better than a 50% chance of kicking this, there was still a chance it wouldn't work.

I know that the thoughts and prayers of my friends and family had a lot to do with this.  They always give me words of encouragement, which keep me going.  I would never have not fought this crap they call cancer, but knowing I had the love coming from all directions gave me added strength to continue.  For all of that, I am so thankful. I still have 3 treatments to go, today being one.  Getting the good news gives me renewed conviction to see this through.  We fought the battle and as of right now, we won.  As so many survivors say, it teaches you to cherish each be thankful for what you have.  And I do.

I need to make that wig appointment, I want to have one to wear when I go back to work.  I don't mind my baldness right now, in fact it's been warmer than normal for March, so I didn't wear my  hat.  Who cares!  The bald head is almost like a badge of courage.  Some of my hair did not fall out so even though I had my head shaved, the hair on the top of my head is about 3/4" long now, and of course, gray.  So I look like a baby bird.  LOL. It's kinda comical.

So on that good news, I'm flying forward to the end of my treatment.  The fatigue side effect has increased and I have to stop and rest a lot.  The neuropathy is worse as well, but hoping that subsides once treatment is complete.  The next couple of days will be rough but then I start the uphill climb to feeling that I can do at least minimal tasks.   Thank you to all my friends and family!  Love you all!

Sunday, March 4, 2012

Back Amongst the Living

Once again, I made it through the first week after a chemo treatment. It's not an amazing victory, but it sure ain't for sissies. Unless you suffer from one of the many body-wracking maladies that exist, you just can't imagine. I'm not a very vocal person, but the body pain that first week is enough to make me groan out loud with every step or movement. I have pain medication but you can only take so much and it doesn't take the pain away completely. The pain is also more intense in any body part that is weaker because of past injury or surgery. Which for me means my knees. And this time, my neck/back from my fall a few weeks ago. Headaches seem more numerous and intense. We just don't plan anything for that first week. I was able to do a few things the first two days but then it hit me good. I've learned not to fight it...just stay in bed and try to rest or sleep. I literally hurt from the tips of my fingers to the tips of my toes.

The neuropathy seems worse this time. I'm feeling it in both hands and my feet. It's not really painful, just weird and annoying. It takes away a lot of feelings in those extremities but thankfully not to the point of endangering myself. It also makes some things difficult, for example, filing certain fingernails. It's quite comical, actually. And hard to describe. Thankfully I'm finding ways to do what I need and want. I was able to draw a glass pattern yesterday, so that hasn't been lost. I have to write slower so it's legible, but who cares? I cut glass with two hands but that doesn't matter if the results are the same.

Friday, February 24, 2012

Half Way Point

Today I am getting my 3rd chemo treatment of 6. This means I am half way through this treatment journey. Time has gone by so quickly. I feel like a seasoned veteran, knowing what to expect and how to handle it, unless some new side effects show up. I've been working through the neuropathy and it isn't as bad as it was. The fatigue is the main side effect that seems to stay constant. The next 7 days or so will be the worst days, as the muscle and joint pain will put me out of commission but it will pass. But who knows...maybe it won't be as bad.  It could happen...

I received very good news from my doctor checkup yesterday, which makes all of this worthwhile. My CA125 is down again, significantly. 19, which is right in the middle of the normal range. This is outstanding news and is a positive thing. It means the chemo Is doing what it should.  I will be having a CT scan in the next 3 weeks (routine in this case).  I am hopeful that it will also show positive news.

I truly feel the support and comments from my friends, family and acquaintances has helped me get to this point.  Unless you go through this, you really have no clue how important that is.  In my case, even more so as we don't have family and friends close by, so I probably rely on my Facebook friend list more than I should.  Whatever gets you through the day is my thought.

My significant other, Jack, has also been very supportive.  Many days are rough--I'm hard to deal with when I'm well...and this ordeal has made me more moody, bitchy and demanding, but I think its normal considering the source.  Jack has his own idiosyncrasies as well.  To top it off, we are not used to being around each other 24/7 for months.  So the stress does come out.  But we get through it.  We have the same goal...for me to get well.

I'm on a "good news" high right now--that should help me get through the next week or so.

Tuesday, February 14, 2012


Today was bloodwork day, my numbers are where they expect them to be.  I've been feeling pretty good, just a lack of stamina, with the exception of today, I woke up feeling like a truck hit me and my legs and hips hurt.  Thank goodness for pain medication...I took it and got ready for the trip to the hospital.  I'll rest the remainder of today.  I didn't sleep well last night and I've been pushing myself for the last 4 days to try and do things.

I have been experiencing what I guessed was a side effect of the chemo...neuropathy.  It's been affecting my right hand and wrist, my fine motor skills, as the nurse said.  A weakness making it difficult to lift things with my right wrist/hand...the laptop, pans, etc.  Down to my fingers making it difficult to write and even cut glass.  Needless to say, it's scary and frustrating, though not life threatening so I figured I could wait until today to speak with the nurse.  I did confirm my personal diagnosis (LOL) with the nurse and she said to talk to the doctor next week when I see him as there may be a dosage adjustment needed or whatever he feels needs to be done.  With each treatment it can get worse as it is one of the side effects that is cumulative as opposed to side effects that go away once your body adjusts.  It is also a common side effect of one of my chemo drugs, Paclitaxel.  Again, not life threatening, but a nuisance that can actually continue well past treatment and even be permanent.  Ya know, I'll take it....if this treatment gets rid of the cancer, I'll deal with it.  I've already adjusted my glass cutting technique to accommodate the weakness.  Where there's a will, there's a way.

One of the things I hate most is the whole schedule.  The first week following treatment is the worst in regards to debilitating side effects.  The second week I'm working at trying to build myself back up, feeling like I want to do things but fighting the fatigue.  The third week I actually feel human and can do things with an occasional rest period.  Then its time to start it all again.

February 24 is treatment #3....halfway through.

Sunday, February 5, 2012


I'm caught in a vicious circle...I've been so fatigued since my last chemo treatment, so I rest, but probably resting too much, so when I do try to do anything, I feel so puny (that weak, shaky, clammy feeling you have after a bout of the flu), that I have to give up or really struggle.  This is affecting my attitude, leading me into a bit of depression, which just feeds back into giving up because everything is a struggle.  I think I'm past the body/muscle aches, but am finding it difficult to generate any energy or push myself to do anything.  I hate this.

Today I reluctantly got up, got dressed and shuffled to my desktop computer.  Paid some bills and decided to do my taxes.  I'm glad I did...I feel better for it, mentally at least.  Tomorrow I am going with Jack to his doctor appointment and Tuesday is my bloodwork day.  Maybe I'll even have Jack take me to my local glass shop and get some new glass.  I hope to stay down in the studio at least one of those days for a while and work on some glass.  I miss my glass.  I do have some pieces to pack up for shipping and I have some pieces that I need to make for some orders.  I know being down there will lift my spirits. 

I hate whiners.  I think I've said it before and I think I've admitted to being a whiner on a couple of occasions.  So I will need these upcoming outings for an attitude adjustment...I'll snap out of it.  The journey is just not pleasant, especially if anyone is around me, which fortunately, only includes Jack and he handles it pretty well.  He pushes me gently when needed and not so gently when I really need it.

Think I'll go paint my toenails a different color.  That cheers me up.  Strange but true.

Oh, and I still really like rubbing my stubbly that weird???  LOL  Hey, maybe there's money to be made...$1 a rub!  It could go to cancer research! 

Wednesday, February 1, 2012

Chemo #2

Monday was my second chemo treatment.  It went smoother than the first one as we were able to block the nausea before it had a chance to kick in.  It took 6 /2 hours to receive the chemo, which appears to be the time frame from here on out.  I have been waiting for various side effects that I experienced after #1, but the only ones that seem to be reoccurring are the fatigue and muscle/joint pain, which may be connected.  I had such energy the first day after #1 and silly me, though I would have the same after #2.  Well, that was not so.  I stubbornly tried to do a little bit of shopping and that turned out not to have been my most brilliant decision.  I had to cut that short and come home.  I barely made it up the stairs and this morning my lower body is aching.  Lesson learned.

Finally got my remaining hair shaved off yesterday.  It's actually is a relief to have it gone.  I should have done it sooner as my hair is all over everything.  It isn't really bothering me to be bald at this point.  Certainly less maintenance.  I have a hat to wear during the night to help keep the warmth in and slept very well last night.  My "going out" hat collection has begun.  And I will now make the wig appointment with the American Cancer Society so I can start getting used to wearing one for when I return to work.  My eyebrows are almost gone and my eyelashes have started falling out too.  I talked with my hairdresser about the best way to cosmetically apply semi-natural looking eyebrows, as I would rather go without than to "draw" them on. All in preparation for returning to work in the early summer.

My oncologist confirmed for me that he feels I have a better than 50% chance of this chemo working, which may not seem like good odds, but of course, who can predict something like that?  He is erring on the side of precaution and that's good enough for me at this point.  Probably the best news came in regards to my CA125 number.  It has never been under 100 since my diagnosis in 2008.  Normal range is 0-35.  Many things can affect this number, but my onc has never really been happy with my numbers.  We knew the cancer was still hiding somewhere as evidenced by the 2 occurrences of rare external endometrial tumors in spring and fall of 2011, that radiation took care of.  But various scans were showing nothing, until the suspicious spots on my lungs in December on a CT scan.  Then the subsequent PET scan did not show those (they were too small and only suspected to be metastatic) but revealed 3 definite spots in my abdomen, which resulted in the chemotherapy decision.  So imagine my joy in hearing that my latest CA125 number went down to 51.7 after the first treatment.  They want it to stay the same as it was or go down, so I accomplished that.  A small victory, but a step in the right direction.

So my days will continue to consist of seeing what and how much I can do and resting in between.


Wednesday, January 25, 2012


This week, so far, I haven't had energy to do anything.  Taking a shower was a chore.  Went with Jack to his doctor appointment and that took everything I had.  I hate feeling this way.  How anyone can work through chemo is a mystery to me.  Of course there are good days and bad.  I guess I'd consider this entire week as not so good.

I suppose the side effects affect everyone differently and of course, the various drugs or mixture of drugs can bring about differences as well.  I just hate feeling this helpless.  I didn't expect chemo to be a walk in the park, but until you experience it, you just can't imagine any of it.

Still haven't gotten my head shaved, have about 1/4 of my hair a quasi-mohawk...sleeping on my side probably helps to rub the hair off the sides of my head.  LOL  Maybe I'll go in next week to get it all taken off.  Its actually not really bothering me any more to see it falling out.  I think its rather comical.  But I'm finding it everywhere.

Gearing up for the next treatment this coming Monday.  

Friday, January 20, 2012

Losing My Hair

I started losing my hair this week. Of all the side effects I have experienced, this is the most dreaded. I would be willing to bet its the most common first question oncologists are asked by women, "will I lose my hair?". Probably lots of reasons why but most likely because our hair is our "crowning glory". Most women express themselves through their hair. Even if you don't wear makeup, you probably still do something with your hair. I do...I get it colored and cut once a month; earlier in my life because I think I should have been born a redhead and now because I'm over 50% gray and still feel I should be a redhead. Your hair can make you look older or younger than you are. Men love long hair. Women love long hair too. Little girls love playing with hair (well most do), either their own, or their friends' or their dolls. Its just so much a part of who we are as females. But when we are dealing with cancer and chemotherapy, the hair loss does one huge thing. A friend who has gone through it stated it perfectly. Seeing our bald head reminds us that we are ill. It slaps you in the face, there is no getting around it. Not that we forget, how can you forget this experience. But in between the treatments, after the immediate side effects subside, its easy to shove it to the back of your mind until the next treatment, especially since having a positive attitude about surviving is so important. The constant fatigue can be managed. But when you look in the mirror or pass a reflective surface, wham....the bald head reminds you. Yes, we wear hats, scarves and even wigs, but each day, at some point you have to see your head. And you are reminded of the battle you are waging.

We all have our ways of dealing with it. I had asked my hairdresser if I was ever to go through chemo and start to lose my hair, would she just shave it for me, as I'd rather face the inevitable than watch it slowly get thinner and eventually fall out completely. Of course she said yes. So within the next week or so, I'll go in and get rid of it. I'm going to stick with hats and possibly some scarves. I'm not working during this whole thing and am pretty much sticking close to home. I will, though, choose a wig, compliments of the American Cancer Society, and try to get used to wearing it, for when I do go back to work as my hair won't even start to grow back until long after I return. I think I will feel more comfortable riding the train, walking in Chicago and working in the office with some semblance of normalcy. I will also learn to apply eyebrow pencil correctly to simulate eyebrows. Maybe even some eyeliner to help with the lack of eyelashes. I'll have to see about these cosmetics might be better to just go without, since I don't wear it to begin with.

I have another friend who apparently has been looking for an excuse to shave her head. I have now provided that excuse and she is so ready to do it! LOL I actually think she can rock the bald, on the other hand, not so much. Oh well....its just hair and as I've told myself and others who get upset about a bad hair will grow back.

Sunday, January 15, 2012

Feeling Good

Today has been a good day. I managed to get myself down to my glass studio for the first time since my chemo treatment. Thankfully I do my glass work sitting because I know I wouldn't be able to stand for long. It's just so weird to feel good so I try to do a few things and have to rest after a little bit. Sleeping doesn't help this kind of fatigue. I can't imagine having to walk from the train station to my building and back. I truly don't think I could make it.

What is so crappy about feeling good is that by the time I feel almost normal, it will be time for the next treatment. So this whole process will start again. The only good thing I can say is that I will know what to expect. I will take the anti-nausea drug BEFORE I get sick. The chemo drugs in the next treatment are the same as the first. I'm not looking forward to a change in drugs further down the line, but I'll just cross that bridge when I come to it.

I'm very surprised and happy that Jack decided to start coming into the treatment room. He's not big for hospitals and has never visited me when I've had my various procedures over the years. Which is fine, I really don't like visitors when I'm in the hospital. But the chemo treatment room is different. Like I said before, you come to know your fellow patients and conversation helps the time go by. Jack loves to talk, so he has become quite comfortable in there in a short time. I do like having him there.

Time to load the kiln, get it going and drag my butt upstairs. It was a good day...

Friday, January 13, 2012

Bloodwork Friday

I have bloodwork every Friday throughout this entire chemotherapy. They check levels of various things going on in your body, especially the immune system stuff. They know what it should be at various stages. Today my numbers were right where they want them to be, which makes me happy. Next week is when they expect the levels to be down to their lowest. Then the week following they check again before starting the next round of chemo to make sure your body can take the chemo. So all is going as expected except for my stupid porta cath. Still couldn't get blood out of it. They tried the stuff that should have cleaned out the fibers that are stopping the outward flow of blood, even letting it set awhile. Still nothing. This is not a deal breaker, it just means they have to use my uncooperative veins to draw blood. My veins like to hide. The nurse told me that they have seen everything, though. They had one woman whose cath did not give blood for 2 years then out of the blue it started. They never give up in hopes that it might work. So every week we will try it.

Most patients get on a specific schedule of treatment, which means you see the same ladies every week, especially since the chemo lab is in the doctors office (so we all have the same oncologist and since he is a gynecological oncologist, his patients would all be female). Its nice because you develop a camaraderie with women who all understand what you are going through.  Many times they have a male family member with them which can lead to comic relief.  (sorry guys, but you can't help it)  Its like a little extended family in that you can feel free to talk about, in detail, any side effects you may be experiencing.

It also lets you see that, no matter how bad your cancer is, there is some one who has it worse.  Last night I was feeling down, something I try not to let myself fall into.  But today there was a new woman in there for her first treatment.  Within the past year, she has lost her husband and mother to cancer.  And while she was busy caring for them and the aftermath of their lost battle, she realized something was wrong in herself.  She was diagnosed with stage IV uterine cancer that had spread to other internal organs.  She has a job but no insurance, so being a "self pay" patient, she is not eligible for any of the case studies, which include new, promising drugs.  And she still had the attitude that let her join in our conversation and laugh.  Sorta brings it all into perspective, no?

I'm not saying that I can't have sad days, but I mustn't ever let them take over.  My chances of survival are far better than average.  I'm lucky to have my job and good insurance.  I have a multitude of friends (some who have been through it) and family praying for me everyday.  And a well respected oncologist taking care of me.  So as I am fond of saying, "suck it up, buttercup".

Oh, and I lost another 5 pounds....

Wednesday, January 11, 2012

Out and About

After my little tasks this morning, I rested a bit then put on some clothes. We decided to get out of the stale house air and go to the post office. It's a gorgeous day (calm before the winter storm tomorrow) and I have to try to move about. Friday is another doctor visit for blood work and a flush of my cath to clear out the fibers blocking the withdrawal of blood and I want to be able to walk in on my own steam. I think I've laid in bed non-stop long enough this first time and the only way to get moving is to force myself to do a little at a time, when I can. I'm thinking or hoping most of the immediate side effects of the first treatment are over(?) Now just to deal with the fatigue and whatever else comes along. I still have all my hair, so I have that to look forward to.

I came up the stairs slower than normal. The muscle/joint pain is really taking its toll on my knees. The nurse did say that if I had any weak points in my body, those would be affected more so than the rest of my body. She wasn't lying. My knees were replaced years ago, but the left one needs work but all in good time. I have pain meds for that and will use them effectively, that's for sure.

So we're back home, ate some lunch and I'm feeling a nap coming on. This is the best day since last Friday, so far.

Tuesday, January 10, 2012

Rough Couple of Days

The last 2 days have been less than good..actually pretty bad.  After the joint/muscle pain set in, Monday I woke with the most excruciatingly painful headache I've ever had.  It was literally making me ill.  I called the doctor's office and one of the nurses instructed me to take the vicodin, which thankfully, helped.  I stayed in bed another whole day since the other pains were still lingering.

I'm going to be optimistic today that I may be able to shower and possibly even take a walk to the kitchen.  Can't promise much else...

My family doctor called yesterday.  I love her, she is a pistol.  She had just then gotten all the notes and such from my oncologist on what was happening.  She was very concerned about them doing all the insurance stuff right so I didn't get hit with any of that.  We went over my new drugs and any changes the cancer doc may have made.  And she told me to call her for anything I may need, especially the vicodin.  I was as helpful as I could be, considering how I was feeling, but she understood and will most likely be checking up on me periodically.  I did get back with her last evening through the online "NextMD" site with some of the drug amounts and she wrote back that the insurance stuff is all good.

Update!  Yay, I managed to shower!  Wore myself out but now I can stand myself.  I'm also changing the sheets on my bed.  It may take an hour, but I'll get it done.  And does everyone know how good cottage cheese and peaches taste?

Sunday, January 8, 2012

In a Day...

I went from feeling pretty good to feeling like I've never felt before.  The muscle/joint pain side effect hit like a ton of bricks.  Literally over night.  No position is pain free.  I have vicodin, which gives some relief and ibuprofen helps a little.  I had to get out my walker from my knee surgery days just to walk at a shuffle.  It's coming right on schedule, according to the literature. Thankfully, this will go away within a couple of days or less.  But when you are in the throes of this, you think you will never feel normal again.

I don't have an appetite but when I make myself eat (or I should say, when Jack reminds me I should eat) it goes down good.  And tastes good too.  He will make me anything I want.

I'm not a person who can lay around for long...I always like to be doing something.  So today has not only been painful but frustrating.  But I have to listen to my must not want me to move right now, as a dear friend said.  OK...fine...

Saturday, January 7, 2012

1 Down, 5 To Go

Friday I received my first chemo treatment.  I can't say it was a piece of cake, but as they say, "that which does not kill you only makes you stronger". That goes for cancer in general I'd say.

My porta cath seems to be stopped up so they can't draw blood, but it allows flushing and the chemo to go in.  So next week they have something they flush through there that cleans off  "fibers" that cause this.  Not uncommon.  But it will add about 2 hours to a 5 minute blood draw.  Crapadoodle.  But what else do I have besides time?  lol

I am a part of a clinical trial that includes 3 chemo drugs:  Taxol (Paclitaxel); Carbo (Carboplatin); and Avastin (Bevacizumab).  The trial drug is the Avastin and how it works with the other drugs I will be getting.  I did have a reaction to the first drug, Taxol, but as soon as they stopped the flow and waited about 1/2 hour, it went away.  It is scary, though.  I got severe lower back pains that also went down the front of my thighs; pain and heat across my chest and upper arms; and my blood pressure went up a bit. I didn't flush or anything else they really would have been concerned about but the nurses were all over me.  They all have over 12 years experience as oncology nurses, with the head nurse well over 20, who has been with my doctor all that time.  I feel very secure in their care.  As they started the drug flow again, they explained that it may have just been a first time reaction, my body saying hey, I don't like this, but adjusting.  Which thankfully turned out to be the case.  No more reactions after that.  Whew.

This first time took 7 1/2 hours to get the drugs in me.  Could have been a little shorter but we discovered I have a "positional cath" which isn't something special just a nuisance.  It just means the way it was positioned in my body and the way it settled causes the flow of the drugs to slow down or even stop depending on how I'm positioned.  As long as I was reclined back, it flowed well.  If I sat up or got up to walk it stopped flowing.  It also flowed well if I sat up and breathed really fast, but I can't hyperventilate my way to a cure.  LOL  It kills my back to stay in that reclining position for a long time or maybe its the chair...but looks like I will have to "suck it up" as I'm fond of saying and deal with it.  I'll try a different chair next time too.

I was able to eat a little, some greek yogurt and granola bars, and drink while getting this, since they also include an anti-nausea drug in your non-chemo drug cocktail.  Drinking is extremely important as it keeps you hydrated and helps to flush the chemo out of your kidneys.  Anything you can drink is fine, water, of course, being the best.  The chemo does affect your taste buds, so things you may have liked before may not taste as good.  As I've bitched about before, I hate water.  But the MIO water additive that I've come to love still tastes OK so I'll get my fluids. My appetite will decrease, but as long as I keep up with my proteins and eat what I can, I should be OK.  I certainly wouldn't suggest this as a super weight-loss plan, lol, but hey, if I have to go through it and as long as I eat right, I'll take whatever weight loss comes along.  I, as opposed to some others, have the spare weight to lose.  There was one lady in there who definitely didn't have the weight to lose and has lost 18 pounds in 3 weeks.  But she has been having huge problems with the nausea...they've had to try everything with her.

I was feeling pretty hungry when I got home, so had some shrimp and sweet potatoes.  Went down just fine.  Then about 2 hours later, the nausea hit me.  Big time.  Couldn't throw up, wish I could have.  I already had the 1 anti-nausea drug here that I'm supposed to take 3 times a day, but starting Saturday morning.  I had another one waiting at the pharmacy that can be taken in between when needed, but thought it could wait to be picked up until today.  Bad plan.  So finally at midnight I took one of the main ones...screw the plan I had to start those at 7 in the morning to get on a schedule.  And I'm glad I did, that with one of my clonazapam, which also helps with nausea (who knew?) and within 20 minutes my nausea went away.  Thank the powers that be! Still had a restless night but at least I felt fine.

Feeling good this morning, slept in and my morning(?) coffee tastes good. Jack and I have discovered that planning anything for the day after chemo is not a good idea. So I'm just doing what I want and will take it easy.  The hard fatigue isn't supposed to hit until 3-5 days after the chemo, so I've got some time I guess before I deal with that.  My hair should start falling out in about 2 weeks.  Yippee-skippee.

So far, so good, I will say.  Positive thinking all the way!

Wednesday, January 4, 2012

Porta-cath is in

A small milepost today.  I had the porta-cath surgically inserted.  If you don't know what that is, it's a piece of plastic medical apparatus that is inserted under the skin, in my case, on my right shoulder, right under the collar bone.  it goes into a vein and allows the chemo drugs to be dispensed via IV without having the nurse have to find a vein every time and also lets them draw blood for the blood tests.  There are probably better medical explanations for it, but I only understand the bottom line definition. Since its under the skin it doesn't interfere with anything and doesn't get infected.  It has to be flushed periodically and will be in me for quite some time.

The procedure went well but it took the entire day!  I'm tired and need to rehydrate myself since I couldn't drink anything for well over 15 hours.  And I was STARVING.  I feel fine, wasn't totally "under" but only under what they call "twilight"  I could hear things but was drifting in and out.

The site does't really hurt and tylenol should keep any pain at bay.

So Friday I should be starting my chemo.  I'm a little nervous but only regarding side effects.  I can handle the fatigue and hair loss, but I hope I don't experience any of the other ones, at least not for long periods of time.

I feel bad for Jack...he sat and waited the entire time.  Or walked around the hospital, trying to find a comfortable place.  Bless his heart, he was a trooper and even came to recovery, which he doesn't usually do.

Time for some TV and sleep.

Tuesday, January 3, 2012


It was fate that made me get up and go to work today.  Maybe not for me.  But a stranger on the train.

I had my monthly train ticket for January that, unfortunately, is non-refundable.  I didn't know about the chemo in time to stop the auto purchase.  Oh well...$139.00 wasted.  You can't sell them because everyone that needs one has it by the first business day of the month.  I did use it one day. But tonight I sat in front of a woman that asked the conductor if they had found a monthly ticket and his answer was no.  After about 5 minutes, I turned to her and asked if she really had no idea where she lost it.  She said she did leave it on the train, but forgot to pick it up before departing.  So I gave her my ticket. I had no use for it and why waste it?  She couldn't understand why I would do that so I told her this was my only day riding the train this month because I was starting chemo.  She was so thankful for the ticket because her husband was out of work.  We chatted a bit, come to find out she had uterine cancer and chemo when she was 20 and she is now 60 and cancer free.  So in a way, it was good for me too, because it was another story of a cancer survivor.  Another story of hope and success.  We ended the convo by her asking my first name because she was going to add me to her prayers.  That brought tears to my eyes.

Then I got to my stop, stood up to button my coat and get my bag and promptly fell backwards as the train lurched to a stop, thankfully landing on the armrest before hitting the floor.  Shook me up bad and Jack's words came to mind:  "no good deed goes unpunished".  hahaha just joking. But I was very happy that my ticket didn't go to waste.  And some extra prayers are always a good thing!

Little nervous as the days get closer.  Tomorrow is surgery day.  Piece of cake!

Monday, January 2, 2012

Moving Forward

Talked to the chemo nurse today, I get the porta-cath surgically inserted on Wednesday and I will be starting chemotherapy this Friday.  The process on Friday will take 6 1/2 hours!!!!  I have a steroid drug to take prior to the chemo, to help prevent any reaction to one of the chemo drugs.  I also have some anti-nausea meds ready for after the chemo treatment. I hope that I will be spared many of the multitude of side effects. I hope my head isn't too ugly.  I may have a difficult time looking at it. LOL  I couldn't look at my hysterectomy site for some time after the surgery. 

I'm going to work tomorrow for the last time until mid year.  That sounds so strange and scary.  This all still seems so surreal, I can't believe it has come to this.  I really thought I was going to be able to pass up this poison they call chemotherapy, that I might be one of the fortunate ones.  But truthfully, after the exterior spots appeared, I knew the cancer was still in me, that it wasn't over yet.  This is probably why my CA125 number has never gone down to a level that made my oncologist happy, but all of the tests and scans did not show anything until recently.  Cancer is so insidious.  It  hides in your body, waiting until it finds the chance to show it's ugly face. 

So with a positive attitude, we will move forward through this week.