It Begins Again...

As I mentioned in a previous post, I will be going into chemo again.  I talked to the medical oncologist today and I feel much better about the situation than I did after talking to they gyn/onc.  Today I was told that I will be starting tomorrow and instead of using regular taxol, he is using a more expensive form because of a reaction he had not been informed of.  When he first started treating me in August, they did the infusion slowly to make sure I wouldn't have any kind of reaction.  The next time I was at a different location and they gave it faster and I started having extreme back pain. When they slowed it down, the pain didn't occur.  The only problem is, they didn't inform him of the reaction.   It was decided that I would get treatments at the location where the doctor is rather than the location closer to where I live (both are close to home, but the other one is much closer).   That way, if I have any kind of reaction, he is there and can take action.

I will still be getting taxol, but apparently the form they will be giving me is bound to something derived from humans (I don't remember the word he used right now) so it won't require the benedryl to prevent a reaction but it is more expensive and most insurances won't cover it unless there is a reason for it.  Because of the past reactions, it should be covered.  I just hope that it goes ok.

Back on the Roller Coaster

I went to the doctor today (March 11) and got a rude awakening.  Not that it wasn't totally unexpected, but it sure wasn't appreciated.  I knew that my CA-125 was on the way up again (I had been told that during a previous visit with the medical oncologist two weeks ago), but hearing it from the gynecological/oncologist made it much more real.  They were both in agreement that something needed to be done, but the way it was presented to me today was really scary.

I accept the fact that my condition is chronic and that I will be in chemo the rest of my life, but when the doctor told me today that I could choose between chemos and that my options were now much more limited than previously available it was hard to hear.  Especially when she said it was either that or look into hospice.  In my mind, looking into hospice is giving up and saying there is nothing more to do.  Personally, I am not at that point yet.  Other than a few aches that hadn't been there before, I feel fine.  I have to many things to do in life to throw in the towel and accept that defeat!  So I am getting back on the chemo as soon as I am able to get in with the chemo doctor again, which will be next Monday.

They want to put me back on the weekly taxol, but that means I will lose my hair again.  The other option I was given was to go on doxil.  I talked to one lady recently who had been on that and she shared her horror story with it and I decided that I would rather be bald again than to face the possibility of having blisters all over the place; besides which that is what the chemo doctor suggested since it had been successful before.  Most of the other options they use have been ruled out because of reactions I had in the past.

There was one strange thing the doctor told me to do.  Normally, I eat a lot of produce and mostly organic foods.  Today she told me I should eat more processed foods so that all digestion would take place in the stomach so that I wouldn't face another bowel obstruction like I had in January.  I need to do a little research on that to see if I can figure out a healthy way to be on a low residue diet.  All I can say is I will KEEP ON KEEPING ON!!!

Life goes on in the new year

Since my last post, a lot of things happened.  I spent five days visiting friends in Moose Pass, Alaska (about 100 miles south of Anchorage).  That was between December 24 and 29 of last year.  The trip was not too bad until we were about 20 miles south of Anchorage.  Some joker tried to pass us and then pulled into our lane before he had cleared us and we both went off the road.  He came to check that we were ok and then he hitched a ride into town and that was the last anyone had seen of him.  At least the state troopers had a warrant out for his arrest since this was not his first hit and run apparently.  When we first came to a stop, I saw steam coming out of the vents so we got out of the car thinking it was going to blow or something, but that didn't happen.  My sister and I and our two puppies were taken by ambulance to the hospital in Anchorage where we were both checked out and later released.  The entire time I was being checked out, Sam (our miniature St. Bernard) was laying on my bed and when they let me get up to make sure I could walk ok he wanted back up the bed after he had a drink.  Poor puppy was so scared and he still is hesitant to get into a car.

The next day, we got a rental car to use until we either get our car back or get a settlement so we can get a replacement.  By the time I got back home, my stomach had really started bothering me.  My sister didn't feel comfortable driving so I had to wait until our roommie got home and he took me to the ER.  It turns out that I had a bowel obstruction and boy, was I miserable!  I was admitted that night and had an NG tube put in.  That was miserable since it made my throat hurt every time I tried to swallow so I spit a lot.  At least the doctor treating me here listened to me when I said that it was because it was easier to spit than to put up with the pain of swallowing and they did allow me to have pain medication for that purpose.  The last time it happened (Dec 2011) the doctor treating me kept saying I was vomiting and delaying the removal of the tube.  I was finally release Friday after being on a liquid diet for a day and solid food for a day.  And I am told that poor Sam kept laying outside my door because he missed me so much.  So cute!

One good thing came out of that.  I found out from the gyn/onc that was the attending physician that my tumor markers were at 11 (anything below 35 is considered normal) and there was no evidence of disease on the CT except maybe one enlarged lymph node in the groin area that may eventually be biopsied.  I am still on the blood thinner shots they started after finding blood clots in both lungs, but I guess I can live with that.  Now I guess that it will be a game of wait and see what happens.  Happy New Year!

Another year almost over and I am still here!

Here it is, just 8 days before Christmas and I can say I have made it through another year...and what a year it has been!  I started out the year finishing one regimen of chemo and then found a tumor on my surgical scar so I started yet another type of chemo.  I made a trip to Thailand for 6 weeks which gave me a two month break from chemo.  I moved from Missouri to Alaska at the end of the summer having restarted on the chemo in the beginning of July.  I continued on the same chemo for another three months, losing my hair once again.  That takes me up to late October I believe.


My life in Alaska is somewhat different from when I was in Missouri because I am now living with my sister.  She is training a puppy to be a service dog and we got a boxer to do the same thing for me.  Unfortunately, he didn't work out and we had to sell him.  It is not all bad because we now have another puppy that is a lot calmer, but won't be big enough to help me with balance which is what I really need.  We will be getting a bigger version of him in the spring.

I have been trying to eat healthier and I think that had a lot to do with the cancer clearing up although the doctors will probably try to tell me different since I was on chemo the entire time so there is no proof that the diet had anything to do with it.  I guess I will see what happens when I see the doctor again next week.  I had a CT a couple of weeks ago and the only thing that showed up on that was blood clots in my lungs so I am back on the blood thinner shots (I hate that!) but at least there was No Evidence of Disease so I can finally say "I am dancing with NED"!  I hope that I can continue to say that for many years to come, but if I believe what the doctors tell me, this will never go away.  I don't buy that and I never will.

Catching up

Here it is the end of September and I haven't posted since April.  I had a two month chemo break in order to take a trip to Thailand for six weeks in May/June.  It was a lot of fun and I relaxed a long time.  My hair did start to come back and before I started treatment again I had a little bit of brown hair showing on my head.  But back to Thailand...

I made a trip to Thailand leaving Missouri May 10.  I had problems from day one.  I found the weekend before I was to leave that my passport was missing so I made arrangements to delay my flight for a day so I could pick a new one up while I was in Seattle.  I wound up getting there after my scheduled appointment, but they told me I could get it the same day if I came in with a photo so I was able to get it.  Fortunately I had a scanned copy of my lost passport so I didn't have to pay a research fee, but the one I got was only valid for a year.  I got back to the airport later in the day and was able to get the replacement ticket for a flight the next day without charge because of a lot of work on the part of my brother and a sorry story that I gave the ticket agent when he told me the reduced price was $80 and I told him fine, but it would eat into the trip money so he didn't charge me.  I felt so lucky.  My flight from Seattle to Tokyo was uneventful, but it was nice that they took my by wheelchair through the security procedures because it was really hard for me to walk very far.  I was surprised that there was another wheelchair waiting for me in Tokyo and another when I arrived in Bangkok.  I took a taxi from the airport to the hotel my brother had booked for me and it was a pain getting to it because it was so far off the road.  The driver started to try to drive back to it then had to back up to where there was a security guard and I waited there until they had made contact.  I then was walked back to it with the guy pulling my suitcase and I was carrying my backpack purse and laptop.  I checked in and was taken to my room on the second floor.  It was pretty much the only time I was in air conditioned room.

I woke up the next morning and headed out asking how to get to the train station so I could buy a ticket on a sleeper train to get to Chiang Mai for the next part of my journey.  Unfortunately, my niece was on a visa run that day so I wasn't able to see her so I just hopped the first available minibus to Pai which was about four hours up a windy road in the hills.  It was not a fun trip, but I slept most of the time so it didn't matter. When I got there, I started walking down the street and checked into the first guest house I saw.  It was 250 baht a night (about 30 baht/$).  The next day I paid for another week which took me through the time until my brother and sister were to arrive.  I stayed there until after they were there then they found me a place where they were at and got me there.  It was a lot nicer place and the same price but it was a mile or so out of town and I wouldn't have been able to get there on my own.  I walked around town a lot and got massages and ate a lot of cheap and healthy food.  It was a nice break from chemo.

After we stayed there for a week, we proceeded to head south to an Island (can't remember the name right now) and spent a week there.  It was a lot more expensive since they had to ship all food in and the place he chose to stay was way far away from where the boat dropped us off.  It was nice to be right on the beach but everything else was a royal pain.  I was really happy to get back to the mainland.

We then went back to Bangkok because it was time for my brother and sister to leave.  My niece and I spent one night there and then headed to Kanchanaburi, made famous because of the movie "Bridge over the River Kwai".  In fact we walked down to the bridge one of the days she was there.  She had to fly back to Taiwan the same day I had to go for my visa run so we went back to Bangkok for that.  My visa run was somewhat uneventful but it took all day.  I went back to Kanchanaburi the next morning and checked into the same place I had stayed with my niece.  I bought a lot of fruit while I was there since it was so cheap (100 baht for 5 kilos) and it was fruit that I had read was good for fighting cancer.  There must have been some truth to it since when I got back to Missouri my CA-125 was actually lower than it was before I left.  That was a very relaxing two weeks for me, mostly sitting either in my room or on my porch studying about alternative therapies and trying to find a real way to heal myself.  I ate more healthy foods and tried to eat less meat and it did seem to help.

I had an uneventful trip back to the states and then found that I had no money available to move into a new apartment so I stayed in a motel for a week, then made a road trip to Colorado to see if I could find alternative treatments there.  My car gave me trouble there so I used the last of my funds to get it fixed and borrowed some money from my sister so I could get back to Missouri and then pay for another week at the motel.  I got back into treatment in early July and it was discovered that my CA-125 had gone up to higher than it had been before I left in May from just two weeks of eating Western foods again!  That was a wakeup call for me.  I need to get on a good cancer diet...and I am still trying to do that.  I was also panicking because I found that I was out of money totally.  My sister bought me a plane ticket for July 28 since I couldn't afford to live there any more with no kind of support and then my oncology social worker found a place that would pay for my room for the three weeks I would be there so that worked out for me.   My gyn/onc knew the gyn/onc in Anchorage so she had an appointment set up for me the week I got there so my treatment was only delayed a matter of days.

I moved to Anchorage and stayed with one sister for about a month and then I got into an apartment with my other sister August 23.  I am still in the process of settling in, but overall all is well.  I am in walking distance of the infusion center which is a good thing since we don't have a car most of the time and the bus doesn't go there without having to walk quite a way anyway so why bother.  I have lost my hair again (it had started growing back while I had my two month chemo break) and I only cover my head when I go outside because my head gets cold.  My treatments have gone pretty well, but I don't really know what the plan is since I don't see the medical oncologist except once a month or so and the gyn/onc even less often.  I also talked to a genetic counselor who suggested genetic testing to see if other family members were at risk and I hope to get that in the works soon.  I hope that turns up negative but information would be good one way or the other so that we can know if they are at risk in any way.

I am trying to become involved in activities here including the Red Cross disaster services again which I should be able to start doing next week and Let Every Woman Know-Alaska which is a group that tries to raise awareness of gynecologic cancers.  I don't know what will become of that, but I will see.  I am also looking into getting a service dog to help me with balance and other things as life becomes more difficult for me.  I will be training it myself so it should be easy once I choose the dog.  I hope that happens soon.  Have a great day!

Here we go again...

It has been a long time since I have posted anything about myself here.  I finished with the chemo that I was on the last half of last year in January.  I thought things were going to go well, but by the end of January, my numbers had started going up again.  I was having urinary problems and they found a tumor on my incision line so they did a biopsy on it and found that it was the same cell type that I had been treated for since the beginning so now I am on taxol treatments weekly.  I had been told before they started that because it was 1/3 the amount each treatment that it wouldn't be as toxic and I might have some thinning but wouldn't lose my hair.  Well yesterday I had a rude awakening.  I wet my hair so I could comb it so it would lay down and it started coming out by the handful.  I went today and got a buzz cut.  I hated to do it because it was just getting to a point of behaving itself after I started to let it grow out and now it is all gone again.  Oh well...at least I can joke about it.

Facing Challenges Being a Caregiver to My Wife (a shared story)

I haven't done this before, but I had a viewer ask me to share his story of assisting his wife with her cancer treatments.  If anyone else would like to do this, feel free to contact me.


Facing Challenges Being a Caregiver to My Wife

November 21, 2005, my daughter Lily was three months old. My wife Heather and
I were enjoying our new small family and we were eagerly making preparations
for the holidays. With anticipation of Lily’s first Christmas season inside of us, we
were definitely caught off guard when Heather’s doctor informed us that she had
malignant pleural mesothelioma. As we listened to the doctor explain the facts
around this disease, Heather and I became increasingly frightened. All at once,
our wonderful holiday plans had gone out the window and we now found ourselves
preparing for a battle to save Heather’s life.

During what we had imagined would be the happiest time of our lives, we suddenly
were facing a potentially-fatal disease. As soon as we heard the news, my mind was
swimming with concern and fear. I looked at my wife’s face and I could only imagine
what she was going through. I listened somewhat in a panic as the doctor described
our options to get Heather treatment as soon as possible. After hearing the options
for treatment, we decided on taking Heather to Boston to see Dr. Sugarbaker. This
doctor had a reputation for treating people diagnosed with mesothelioma and we
wanted Heather to have the best chance possible to recover.

Upon leaving the doctor’s office, it hit me that I would be Heather’s caregiver. There
was no other option and I wanted do it myself to make sure she had everything
she needed. Becoming someone’s caregiver requires an enormous amount of
dedication, inner strength and willingness to accept help from other people. We had
a serious fight ahead of us to get my wife better, and I was committed to helping my
wife in any way that I could.

Life all of a sudden became extremely hectic and chaotic. It was more than a
challenge to try to work, pay the bills, take care of my daughter and also make
sure that Heather got to every doctor’s appointment scheduled. In addition to
these things, I also had chores around the home to do and was constantly making
appointments for Heather and arranging for travel to and from Boston. I quickly
became overwhelmed.

Whenever I look back on what we went through, it seems like a miracle that we
made it through those difficult times. I know that we never would have stood much
of a chance if it were not for the incredible amount of support we received from our
friends and family. My strongest advice to any other caregiver is to accept every
offer of help you receive, and don’t be too proud to ask for it. This job will require
every ounce of your strength, and even the tiniest offer of help can be a huge weight
off your shoulders.

Being a caregiver poses obstacles and new challenges that are hard to meet. While
these things are difficult to meet, they can be faced and dealt with successfully if you
do not give up and if you remain determined. Allow yourself to have bad days, but
never give up hope for a better tomorrow.

I was so reminded of how precious life is and how easily circumstances can change
in the blink of an eye. Heather underwent months of difficult treatments, and against
all odds she was able to beat this disease.

Seven years after getting news of her mesothelioma diagnosis, my wife is
completely cancer-free and our lives have radically changed for the better. If
someone had asked me back then where we would be years later, I would not have
believed we would have been through so much, and accomplished all that we have
accomplished as a family.

I share my story to encourage someone who is in a similar situation to keep their
eyes on the future and to take one step at a time. Never give up hope, and never
stop fighting for the people you love.

Cameron Von St. James
Mesothelioma Cancer Alliance
http://www.mesothelioma.com/blog/authors/cameron/

Got through another cycle with no problems!

I have been through three weeks of chemo since the last time I was in here.  My numbers were in an acceptable range each week so I was able to get all three treatments.  I still have to be there for a blood draw next week, but I will have a break from chemo.  I am thinking of possibly taking a trip to NC this weekend to visit my brother, but haven't totally decided yet.  I hope that all goes well for that if I do decide to go.

Update...August 31, 2012

I went in for day 8 treatment on my current chemo regimen.  With Topotecan, I am supposed to get treatments for three weeks on and one week off.  I got day 1 last Wednesday and day 8 today.  I was afraid that they might not be willing to do it today because my platelets were right on the border of being at an acceptable level (70,000).  My doctor thinks that next week there might be a delay because of low counts, but she also said she thinks I might have to have another transfusion next week as well so I know something will be done next week.

Other things that came up in this appointment made me feel good.  My doctor said I was looking really good physically including good color.  I was lowered from three liters of oxygen to two in order to hopefully wean me off of it since it apparently is no longer needed but she doesn't want to stop me "cold turkey".

Update 8/15: New Chemo...Still delays

Today was supposed to be day 15 (week 3) of Topotecan, but once again my white count was lower than the minimum to allow treatment.  The minimum was 1000 and today I was at 940 compared to last week when I was at 700.  When I talked to the doctor today, she told me that she was going to lower the dose next week and start cycle 2 even though I didn't get day 8 or day 15 in cycle 1.  She has said that the dose will be lowered each time until the white counts are ok.  She said there was one lady who had to get treated at 2 mg compared to the 3.5 I was started with two weeks ago.  The recommended starting dose is 4 and my doctor never starts people at that level as very few people tolerate it.

There was one piece of encouraging news...I haven't had a lot of abdominal pain or burping recently so apparently this is doing something as she believes that those symptoms are caused by the tumors growing on the bowel.  She also told me that I looked better than she had seen me in months, which was really encouraging.  I won't know for sure until she pulls the CA-125 next week.  I also have been able to wear the compression stockings to reduce the swelling in my legs and feet, although after a day or two of wearing them I need to take a break from them as it starts hurting.

I just hope the good news continues!

July 6 update...the nightmare continues...

Just when I thought it couldn't get any worse, it does...I went to the pulmonary doctor yesterday and they say it will take 5-6 months for the blood clots in my lungs to reabsorb.  I can deal with that well enough.  What I really have trouble with is that they now suspect that I either have an infection or heart failure.  Either one could be caused by the cancer treatments, but the swelling in my ankles makes it seem to lean more toward the heart failure...

I had an echocardiogram done yesterday and should get the results from that on Monday and I will be getting fluid taken from my lung also on Monday to check for infection.  I just hope that isn't too painful...The doctor told me not to take the blood thinner on Sunday night because they don't want excessive bleeding when they take the fluid...Talking about scary!

June 25 update

I went to the cancer center today for what was supposed to be day 8 of my chemo cycle and I found out that my White Blood Cell count was very low (was at 500 and needed to be at 1500 for treatment to occur) and my hemoglobin was also low.  It was too late to be able to do the transfusion today so I have to go back tomorrow morning.  I am sooooo tired right now and the low RBC count probably has a lot to do with it.  I just hope it starts going better.

I am also tired of having to do the Lovenox shots every night, but hopefully that will help with the blood clots and the swelling and whatever else it's supposed to help with.  My ankle is so swollen and hurts so bad it is ridiculous.  And the oxygen tank I have to haul around is a royal pain!

In the hospital...again

Once again, I have been admitted to the hospital a week after the second treatment in the cycle.  This time, I had been feeling bad for several days but didn't worry about it because I didn't have a fever at all.  On Saturday I went to a class all day and was able to eat normally and on Sunday I started feeling bad but was able to eat and drink.  On Monday morning I ate breakfast then tried to take my medicine but gagged on a "horsepill" and lost my breakfast.  After that I only took a few sips of water and ate one bagel in the evening.  I did the same thing on Tuesday.  I was supposed to have a CT scan Tuesday but was not able to drink the contrast.  I went to the clinic on Wednesday to get fluids and they did an abdominal x-ray and the doctor told me that I needed to go to the hospital to get potassium and magnesium infusions and much more fluids.  They also checked me for c-diff and I was positive.  Now the nursing staff only comes in when the absolutely have to and they wear plastic gowns and gloves and if I leave the room I have to do the same.  My doctor had talked about sending me home today, but the way I feel right now, I would probably be back in here before you know it.  Oh well...

March 5, 2012 update

I came to the hospital this morning expecting to get my next cisplatin treatment but also expecting to have my counts to low for the treatment to occur.  I was right about that.  I got here about 8 this morning and somehow they didn't have me in the computer but the floor was expecting me.  I had to wait for the orders to get here before they could even do the labs.  After the orders arrived, they found that I didn't have an armband (they told me to come up rather than waiting) so I had to wait for that to get up here.  They finally accessed my port close to 10 and drew the labs.  About an hour later the nurse came in and told me the counts were too low so I probably wouldn't have a treatment, but that the resident on call wanted to talk to me before I left.  I am still waiting over two hours later.  Oh well...Hopefully next week will go better when I come back to try again.

Back on the roller coaster!

I thought that I was going to be free of problems for a while, but I am back in chemo again.  I was in the hospital in December with a bowel obstruction and after that the doctor started talking about chemo again.  I kept resisting the idea because I thought he was just saying that because I was having the obstruction.  But when I actually met with him to discuss it, he explained that the obstruction might have been caused by the cancer or it could have been something else.  It had more to do with the abnormal pap and the PET scan results than the hospital stay.

I had the first round with Gemzar in late January, and was supposed to have the second round with both Gemzar and Cisplatin on my birthday except that my white blood cell count was too low.  So I was in the hospital last Tuesday getting that done because they decided to do the Cisplatin by desensitization because it is a cousin to the Carboplatin I reacted to last year.  I didn't have a problem then, but I wound up getting a UTI and kidney infection by the weekend.  Now I am sitting in the hospital again hoping that things start going better for me soon.  I am waiting on test results from the labs they did a couple of hours ago.  Those were ordered after the doctor saw the results from the chest xray and kidney ultrasound they did this morning.

Although this isn't the best picture in the world, it does show how I look now.  I am currently in treatment using temoxefen (not sure of spelling) and I find that I hurt a lot less.  I hope it is effective so I don't have to go into chemo again.  I will see in another two weeks.

My new website

I have just created a new website through MyLifeLine and that supports cancer survivors.  Feel free to check out the site.  It is a work in progress, but there are a series of pictures showing how I have changed over the last six months as well as having information provided by the Ovarian Cancer National Alliance.  Come by and sign my guestbook and learn more!  https://www.mylifeline.org/daeckardt/?page=welcome.cfm

Life goes on...

It has been three months since my last chemo session.  I thought everything was going well at first, but seven weeks ago, my numbers (ca-125, the cancer tumor marker) started going up.  At that time it had only gone up by 10 points and it was "wait and see".  They did another test last Monday and it had gone from 41 to 79.  When the doctor gave me that information, she told me that any time it doubles from the lowest point she becomes concerned.  Now I am scheduled for a CT scan next Tuesday and to get the results on Wednesday, but when I went to pick up the contrast they told me the insurance may require me to wait for an additional day. That would not be good because my doctor only has clinics on Monday and Wednesday but I will do whatever I have to.  I just hope that the necessary treatment is not too bad because I have already been through so much. But I look at it this way...When life gives you lemons, make lemonade.  I'm just tired of all the lemons I have been getting.

Possible problem

I got a call today from the nurse in my doctor's office.  It turns out that I have another bladder infection because of the fistula so I am on yet another round of antibiotics.  But to make matters worse, I got the results of the ca-125 they did on Monday and the numbers are going up again.  That is scary because I am just starting to get my hair back and there is a possibility that they will want to start me on chemo again.  I really hope that is not the case, but I will have to wait and see.  They will have me get another test on September 19 and then I will have a better idea.  I know that no matter what happens that I am strong and I will get through it.  That's all for now.

Update 8/11/11

I have been doing great lately, but I got one little piece of bad news.  It isn't all that bad, but it looks like the colostomy is going to be permanent.  I saw my gyn/onc on Monday and she told me that it looks like the only way they will be able to prevent any further bladder infections will be to remove the loop on the colostomy which would make it an end colostomy which would never be able to be reversed.  The other option to that would be a major operation that would remove a lot of my intestines and bladder and that would be far worse I think.  I have lived with this thing for this long, I guess I can live with it for the rest of my life.

I have started doing more things lately.  I have become active with the Red Cross disaster services again.  I hadn't done that since before I left North Carolina in 2006 and I really missed it.  I am working on trying to get the Columbia office resources up to par so that if we have to send people to a hotel or to get services we will have a list of places that will work with us.  Right now, there are no agreements with places that would be willing to help us to provide housing to our clients that have been burned out of their homes.  This project will give me a definite purpose so that I have a reason (or another reason) to feel good about myself.