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!