Susan's Hodgkin's II page - Just the Facts, Ma'am.

2009

2009-10-10T16:23:00.002-04:00

Dear Family and Friends,

With gratitude for your continued love and support, I am happy to be able to tell you that my latest scan of September 2009 continued to show no evidence of malignancy.

Love to all,
Susan

Happy Summer, Happy Fall

2008-09-25T22:11:00.004-04:00

Yes, I was scared.

I enjoyed my summer as much as possible, like I said I was going to do. We did not do anything extravagant, but who needs to? I was very happy to be at home and just doing normal things. Slowly getting a little more energy, although I do still have fatigue issues. It's getting better.

But as the time for the next scan approached it felt very daunting. It's so frightening that it's hard to actually even think straight. I would swear I was just acting on autopilot for some time approaching the scan and then the week after.

But! I'm so glad to report - and grateful - that the PET scan shows no sign of cancer.

My oncologist was very happy and optimistic, and I will have my next scan in six months.

And so another big thank you to my family, and friends, and everyone who has supported me through this experience. I'm very grateful.

The best news possible!

2008-06-04T23:35:00.003-04:00

My doctor hadn't yet read the report, so she said "Well we will just sit down and read it for the first time, together."

OK this was a little scary.

Or a lot scary.

I didn't want to think or talk about it at all the entire time between having the scans done and getting the results. I didn't even make a post here about it because I didn't want everyone else to be thinking of exactly the day and waiting with anticipation like I was.

So the doctor pulls out the report and the print is tiny and I can't read it upside down anyway. And she says "Okay... oh. Oh!" with the second 'oh' in a lighter tone. Then she reads "Impression: No evidence of malignancy with interval improvement since December 2007".

At that moment I can't make eye contact with anyone in the room because I've got a lump in my throat and I'm not sure if I'll be able to hold myself together emotionally.

Of course I hoped to be told I was in remission - it's what you're striving for all along - but I was really afraid to hope too much, to not be prepared, to not brace myself for what news I was going to receive. I'm not creative enough to think of any metaphor (although half a dozen cliches spring to mind) that could come close to describing that feeling.

My oncologist, who did not support the haplo mini-transplant suggestion, said.. and I'm paraphrasing, but close to a quote.. the disease can go away, maybe for a long time.. "some people can have remissions that last a long time, years. Some people are even cured. Why not you?"

So yeah. Why not me?

I was told before by the transplant Dr's that if I went into remission that would be the best time to go for the transplant. They believe(d) the disease will come back - "not a question of if, but when" - but I'm really more inclined to go with my onc's optimism. She told me she was optimistic "and I am not by nature an optimistic person". Why not me?

I can tell you that I was already leaning on the "no" side of the fence for a transplant, even when bracing myself for the worst news. I am going to enjoy the summer. 3 months until the next scan, and I'm going to try very hard to believe that the results of that will be the same.

Let me read you another segment: There is no lymphadenopathy below the diaphragm, and there has been complete interval resolution of the previously observed left retroperitoneal lymph node.

For now - celebrate! I'm so, so happy, I've been on cloud 9 since I heard the news, alternately all smiles or tears. I'm excited and looking forward to enjoying life!

And I am very grateful, for everyone who has been supportive of me, near and far - I have been so touched in so many ways by both loved ones and strangers - it's amazing the way that people can be caring and loving with all that is going on in the world. I hope I give it back to deserve all I have received. Thank you. I love you!

Susan

This is a sign I put up in my office at work:

I'm Portless and Feeling Better

2008-05-03T14:03:00.004-04:00

"You are free.." said Laura, who performed the procedure to remove my port-a-cath yesterday.

I'd had some doubt as to how this procedure would go, and while talking to several people over the past few weeks have mentioned that I could not remember the removal of my first port, way back in 1996.

I can now say with confidence that surely I had it removed in the hazy but blissful state of being in the O.R. with anaesthesia likely rendering me unconscious, because I can't fathom that I could have forgotten this experience.

Don't be alarmed; it's not that it was particularly bad. Believe me, a bone marrow biopsy is leagues ahead of this one on the scales of discomfort and unpleasantness - it's just that I think it's not exactly forgettable. Just like Nat King Cole said.

Anyway, I'm sure my oncology nurse would feel somewhat vindicated to hear that the port was "partially flipped" in addition to being in a somewhat awkward position, with the access part turned in towards my breastbone moreso than facing front, ready for needles. Not flipped enough to be inaccessible with the guidance of a fluoroscope, but not quite easily available when going on by touch alone. I think I may send her a card to tell her.

I had a great experience this week, on Tuesday. I went to work, which is busy (always!). After work I went to the supermarket, you know why, then I came home and decided to do something with the stuff I bought, so I made a dinner, then cleaned up the dishes. And I still had energy. Now I don't know if this seems very exciting to you or not, but I will tell you that it excited me to no end! I can't tell you when the last time was that I was able to do that much activity and still feel at the end of it like I could maybe even still do something else, but I am pretty sure it was before April 2007. It feels like - this bit of a milestone, which even a few weeks ago seemed somewhat doubtful.

I'm still cautious now - I know I need to pace myself and take care not to over commit myself - but I'm also planning to enjoy feeling better!

Well maybe not this weekend. The port removal is another matter and of course has a small impact, but by the time we get into next week that should no longer be an issue.

Somewhere in the next few weeks I should have scans done. I don't have the appointment yet, but will make it soon and then we'll see where we are.

Hey.. it's spring

2008-04-17T22:11:00.002-04:00

Not much news on the medical front. I saw my oncologist on April 7th - no apparent problems immediately noticable. I have had a lot of fatigue and some tenderness at the site of radiation, which finally in the past couple of days now seems to be subsiding. Supposed to wait about 8 weeks since the end of radiation treatments (March 25) to scan again.

In the meantime, I have an appt with my radiation oncologist to followup on May 1, and on May 2 I am scheduled to have the port-a-cath removed.

Otherwise waiting...waiting..waiting...

(and working.. and resting.. )

Thank you for all of your support.

And especially thanks for the messages since my last post - it's been a difficult few weeks.. my energy has been low and that also affects my mood.. sometimes I have needed a quiet pick-me-up and your messages here and emails have been wonderful and helpful.

Love,
Susan

Radiation Treatments are done

2008-03-26T21:24:00.002-04:00

Tuesday was the last treatment, so today was the first week day since mid-February that I did not need to rush over to Philadelphia.

I'm very tired and I think I have a cold beginning, some sneezing and coughing. The doctor and nurse told me to expect to still be very tired and possibly still have some GI problems for another 2-3 weeks, as the radiation is cumulative and so just because there are not new treatments doesn't mean there might not still be effects of it.

I have an appointment April 7th with my oncologist and will find out then when they will want to scan. I am assuming it will be 6 weeks or so from now. My followup with my radiation onc is May 1st. Somewhere along the line I will need to also figure out what to do about the port-a-cath, which I still would like to have removed. So maybe a surgery in the future to do that.

While I'm glad the treatments are finished without any major drama, it is a sad week for us here after the sad news of the death last Friday of our cousin Chrisy's husband, Bishop. Please include them and their children, Cairbre and Kira, in your thoughts and prayers.

love,
Susan

18 down, 7 to go

2008-03-16T20:49:00.003-04:00

The time is flying - I feel like I only stop moving on the weeknds and then I pretty much "STOP" moving altogether!

I had to look at the calendar to figure out where I am, but it looks like 7 more treatments by my calculations. That means 2 more of the same I've had, then 5 with a smaller field which focuses only on the exact area where the masses are. I had the films done on Thursday last week for them to rearrange the fields.

I'm feeling good except just harried and tired. I was having a number of un-well feeling problems but the doctor put me on Zofran (anti nausea med) and it has worked wonders.

Thank you all for your support. Have a Happy Easter!

8 down, 17 to go

2008-03-01T10:34:00.004-05:00

I saw the Doctor on Thursday who subscribed anti-nausea meds for me. I didn't think I was exactly feeling nauseous, and so I was skeptical of how much they would help. Since they also carry other side effects (I learned while on chemo) I wasn't too keen on taking them.

But guess what, they helped a lot. Yesterday I tried halfing the dose but it didn't work as well, when I took the second pill I felt a lot better. So you never know.

I'm in a really quiet period right now. So if you don't hear much from me, probably I am just keeping to myself. It is really long days and I don't have a lot of energy left over once I do all the things that have to get done. But so far, so good, and by the time we get done with March I should be also finished with this piece.

Why?

5 down, 20 to go

2008-02-26T21:10:00.003-05:00

So, I promised another picture of 'interesting' markings. It looks to me like the P in PBS, what do you think?

This is gone now, however. It was just done on the second day to help them make a block to protect part of my spinal cord. The block goes in the glass plate of the machine.

Now I am just left with tiny tattoo marks to add to my previous tattoo marks from 14 yrs ago. All my dots together don't add up to hubby's smallest tattoo. :)

So basically it is going like this. I switched my hours at work to go in earlier so that I can leave by 3 without missing any time. I am set for a 4:15 appointment in Philly to get the radiation treatments. The treatment doesn't take long, but between all of the shuffling about and traffic at that time of day it usually turns into a 2 hr trip minimum anyway, sometimes longer. Today we got back about 6:30.

So far I am mostly feeling ok. I have a dip right after the treatment, which gets progressively worse until about 7:30 PM, then starts to improve and I feel better by about 9. During this time I am also a little queasy/sick to my stomach, but so far not with any too bad side effects. So I am 1/5th of the way done. We'll see.

I have 15 more treatments as a larger dose, then the last 5 will be a smaller field, more intense on the spot where the mass being radiated is.

That's all for now - thanks for all of your support.

Love
Susan

Port ok for now / Radiation this week

2008-02-17T16:21:00.002-05:00

It turned out that I had back to back days ofappointments to handle the port-a-cath and then the radiation similations.

On Tuesday I went in bright and early to the CVIR unit to get the port flushed, which hadn't had a successful flushing in a longer time than is recommended. With the aid of X-ray and floroscope machines, they were able to get it accessed and then test it. All is working ok. It has a fibrous growth on it which could be dissolved, but I was told if it isn't going to be used anymore and will be removed that I don't have to do anything about it.

All indications are that is isn't going to be used anymore, and I expect after radiation is finished to be able to have the surgery to remove it. So I declined the disolving.

On Wednesday, the radiation simulation was done. This is where they do a CT scan and also work to position you on the table, then make marks on your body. I will go next Weds, and by then they'll have decided all the right places to point their beams, and do another CT scan to be sure the positioning is just right. If that all goes well, I should start my first treatment on Weds.

Anniversary and Looking Forward

2008-02-05T19:23:00.000-05:00

Today is the 15 year anniversary of my original diagnosis with Hodgkins. I can still remember the face (but not the name) of the doctor who told me. I still remember that stunned, surreal feeling that came with it. "Cancer? How is that possible? I'm too young for this."

Well, a number of people have pointed out to me along the way that "if you have to get cancer, Hodgkins is the right one to get". I guess it's true, if you look at it from the perspective that here I am, fifteen years later, still giving a status report on the whole situation. I am reluctantly grateful. Today I was trying to muster up some good feelings and gratitude for having a disease that has at least a chance of finding a way out, or prolonging your life with some measure of quality.

I fell short a little bit - it was a lot easier to find that satisfaction and happiness when I was in remission - haha! But hey, I'm still working at it.

So I've been neglectful in my postings, which is also somewhat representative of my sour mood on the experience and hesitation to want to talk about it all. Apologies, for not keeping you up-to-date as much as I should. It is a little bit easier to do when you are going through a treatment; there are concrete things you can say about each day and each doctor's visit. But the experience of the past few months, the doctor's appointments within them, have been more abstract. Down-the-road type of thinking, and some news that hasn't made me feel very happy and I really needed to get my head around it all before trying to share it with all of you.

On November 20th, I wrote: "the PET/CT scan still shows the 2 masses in my abdomen as lighting up, which means they are likely still active disease. There's a possibility that they are inflamed tissue."

On December 20th, I had a followup scan, which revealed no growth of the masses and did not note any spread to other places (the good news), but showed an elevated SUV level (the bad news). An SUV level - standard uptake value, I learned - is the amount of sugar the masses take in when they are in the PET scan. A higher level indicates greater metabolic activity, which means that it is active, which means that it isn't likely to be 'just inflamation'. Cancer still there, in other words.

I saw the bone marrow transplant doctor, who suggested I should seriously consider joining a clinical trial for a haplo mini transplant, using one of my parents as a donor. The 'haplo' part means a half-match. Effectively I would be trying to replace my immune system with that one my Mom or Dad, in hopes of wiping out the existing cancer and still being able to fight off infections and survive. I was told there is not a lot of information in terms of research or statistics. I was told an unrelated donor similar kind of transplant can carry a mortality rate as high as 80%,however "all bets are off" when it comes to the clinical trial. I brought the consent form home and read it. It is a terrifying document, honestly. I spent some weeks trying to imagine myself leaving my home knowing I was heading to do this thing, and in each of my little fantasies there I was not able to put one foot in front of the other and walk out the door.

Radiation, as I posted in December, was the next recommendation. The transplant is the best chance for a cure, but of course also comes with these serious risks and side effects. Since the recurrence is localized, there is some hope that radiating the area could stop the growth and buy time. Nobody knows how much. I was told it would be "naive" to think radiation is going to cure this disease - it will come back, but it is a question of "when". "When" might be a long time down the road, who knows?

I went back to the doctors in January, to get the results of the December PET/CT scan. I was disappointed that the metabolic activity of the masses had increased; I was holding onto hoping that it really was inflamation of tissue after the chemo. Since I couldn't imagine myself doing the transplant, I decided to pursue the radiation course instead, but along the way I also decided that I should get a second opinion before committing to another treatment.

Last Friday a visited a major center about 2 hours drive South of here and met with a couple of doctors about my case. We discussed the radiation option, a clinical trial for a new radioactive drug which is successful in Non-Hodgkins lymphoma but is not approved for Hodgkins, and the mini transplant. There was no clinical trial open at the moment for the mini transplant at this hospital, but I was given a much different mortality rate than I heard before about the chances of dying (immediately) from the transplant - 10 - 15%. Just a bit more than one in ten odds of not surviving the initial month of the procedure, not great really, but a lot better than the previous picture I had. I mean, it makes it a little bit easier to want to consider it as an option, even given that it has a lot of risks still associated with it.

The experimental drug clinical trial was interesting, and maybe something I would consider doing, but as it turns out it may not be the best option for me at this time.

I heard back from the doctor who discussed my case with a team of specialists, and they came to an agreement that they thought the best course of action for me would be the radiation. Partly because I was in remission for so long, the radiation is less risky than the transplant and maybe my disease is not as aggressive as it would be if I had relapsed within 1 or 2 yrs of an auto-transplant. They still don't think it's a cure, and it's still a risk to go for the radiation instead of a transplant, because if the radiation fails then it could be that the disease spreads too much to allow a transplant later (when right now I could qualify for a transplant). I think this is a risk I am willing to take, because even with the improved mortality rate, I'm still not all that eager to do the haplo transplant.

Ahead for me:
I have a question about my port-a-cath and whether or not to have a surgery before the radiation is done, or to do it afterwards. It is likely that the port will not be used anymore. It has been a problem to flush it and this can cause blood clotting problems. So I need to either get specialists to flush it (my oncology nurse could not do it the last time) or I need to get it removed (under anaesthesia). The surgery could delay the start of radiation, which has already been delayed a lot, so I am waiting for a call back from my oncologist to help me make that determination.

Radiation simulation - they do a scan while marking up your body so that they can see where they need to put the radiation beams.

Then about a week after the simulation, the radiation will start.

***
Please see the nice pictures of the Prayer Quilt made for me by a special group of people.

For those looking for a Captain update, you can find it here.

Radiation? Maybe... Probably...

2007-12-12T21:54:00.000-05:00

I saw the radiation oncologist last week. Not really much new news; she wants to wait until I have my next PET/CT scan which is next week to see if anything has changed since the September scan. She said she thinks radiation to the abdomen is a possibility and that doing it wouldn't likely prevent a transplant later, but it's also still wait-and-see.

I am still also considering going for another opinion, so we will see how that goes.

Aside from getting the scan done, I don't think much will happen until after the holidays.

So let's enjoy them. :)

For those of you who live locally, John and I are planning to have an open house on December 29th, 12-6 pm. Please call or email me if you think you could come so that we can have an idea of how much food to get. Let me know if you need address/directions.

Thank you all for your support during this challenging year. Wishing you all a very happy holiday season and a Happy (and Healthy!) 2008.

Love
Susan

holidays approaching...

2007-11-20T23:32:00.000-05:00

Hello everyone,

Kathy nudged me into posting..(thank you for the message!)

I have been neglectful. I promised to post after my last doctor's appointment and didn't do it. Well, to be honest, I didn't have all that much fun at the doctor's and wasn't really feeling in a rush to share it. I am a bit in a holding pattern at this moment, going to work and temporarily putting these issues aside, although this mini-vacation from it all can't last too long. I need the break, though. I am finally feeling better and more like my old self (more than 2 months out from my last chemo). I am going to work and even will be away on a business trip to Canada next week.

I also don't want to write the full story here, right now. Everyone is thinking about Thanksgiving and good family time and I want to, too. Nothing is happening in the next couple of weeks, so the details will hold.

The short version is: the PET/CT scan still shows the 2 masses in my abdomen as lighting up, which means they are likely still active disease. There's a possibility that they are inflamed tissue.

Either way, general consensus is that the disease is not completely gone and that it will come back. (One doctor said "not a question of if, but when").

Options include radiation therapy (although not likely curative), a bone marrow transplant, or other clinical trial investigations if I can find something that suits my case.

At the moment I have an appointment to see the radiation oncologist on Dec 6th, and a followup PET/CT on December 20th. I see my regular oncologist again in the beginning of January. Unless I decide to take some other action.

I have a few links and other info which I will post somewhere in the next couple of weeks for more information.

For now - enjoy your Thanksgiving! I am thankful for all the love and support I have received over this trying year. I hope you have a wonderful time with your loved ones this season.

For Staci

For Kelly

Gobble Gobble

Good news on MRI results!

2007-10-24T13:48:00.000-04:00

I am writing quickly during my lunch hour but didn't want to wait another day to report this. I called in for my MRI results as I couldn't stand to wait until my next appt to find out about the "tailbone" issue. NO MASS showed up in the MRI (of the tailbone/pelvis area.. this isn't about the original abdominal mass which is still there). The Dr said she doesn't know what made it show up on the PET/CT but it isn't HD spread to the bone. I am very relieved!

Still seeing the Drs next week for the appointments to determine next course of action.

PET/CT scan results - "stable"

2007-10-07T15:55:00.000-04:00

The CT scan I had done in July showed about a 50% reduction in tumors since the scan prior to the beginning of Chemo (April). I was hoping that the next scan would show further reduction, and/or that the PET scan part of it would not "light up" which would indicate active cells (there was a possibility that the remnants were only scar tissue).

The scan of late September has been described as "stable" - no increase but also no decrease - and unfortunately did show continued active cells. My oncologist told me that it's possible still that the PET light up is due to inflamation; whether or not the disease will progress remains to be seen. Since August and September were particularly difficult with the chemo, it's discouraging to me to find that the net effect of going through them .. is that I'm at the same place I was in July.

The scan also showed something new in an area near my tailbone. I was told it is "unusual" for Hodgkins to spread to the bone - basically they have no idea what this is, if it is anything. So I am going to have MRI done over the next couple of weeks to get a better look at that.

(It's also unusual to get Hodkgins.it's unusual to have refractory disease if you do get Hodgkins, and it's unusual to relapse after 5-10 yrs of remission. Hm...). Well, personally I am quite content to work on the assumption that this is nothing and the MRI's will be conclusive that it couldn't possibly be cancer.

I can't have any more chemo right now because my bone marrow is still weak from all the previous treatments - evidenced by the repeated low blood counts after each treatment.

At the end of this month I will see the bone marrow transplant specialist again, for a review of my case and opinion on options. My oncologist says "nobody is anxious to send you into a transplant situation because it carries a high fatality rate, and you've already had a lot of treatment which is toxic." (Maybe not word-for-word, but pretty close)

Radiation is still out there as a possibility, although not one I am necessarily eager to pursue, either. I had a hard time with radiation the first time, and the location of these tumors is close to important organs, etc.

I will see the oncologist again after the MRI tests are done and we'll see from there. It's unlikely that I'll have any other treatment over the next couple of months, provided nothing surprising happens. It's a possibility that we will wait three months and do a PET/CT again to see if there are any changes.

It could certainly be worse, but it isn't the best news, either.

The good news is that I feel pretty good, aside from being a bit down in the dumps while processing all of this. My energy is coming back better, I've been able to manage going back to work better than I anticipated. Overall, I'm managing well - it's just the challenge of continuing "normal" life while these major questions loom in the background, and moreso, the growing feeling that that particular challenge is likely to never go away again completely.

Love to all,
Susan

Back to work - Feeling good!

2007-09-27T20:18:00.000-04:00

I felt a little bit like a kid on the first day of school, but yes, I did go back to work this week. It was good to go back; I am feeling good and optimistic about getting back on track with my life.

I had the PET/CT scan last Thursday, so now I am just waiting for results. My doctor's appointment is next Thursday, Oct 4th, so I don't expect to have any other news before then.

That's a short update for me; we're just in a holding pattern for the next week.

If you can, please take a look at my post about people who could use extra support, thoughts and prayers, especially for my Aunt Penny and my cousins as they are getting through a very difficult week after the sudden illness and death of my Uncle Dom.

With much love.

Susan

Low Blood Counts - No Chemo

2007-09-13T23:58:00.001-04:00

Well, I can't say I'm surprised. It took awhile to bounce back from cycle 6 and since last week starting this seventh (and last) cycle of GemZar/Carboplatin I have been feeling pretty tired. Nothing new, I know. I wish I knew how to describe levels of tiredness, because although I've been tired for the past six months or so, there's an increase which is noticable to me, but I have no idea how to really explain it. "More tired" - how's that for a description? :)

So I had the blood drawn from my arm, which has been the standard procedure we've been using since the fiasco with working 2 hours to access the port only to find out the blood counts were not good enough. Of course this detracts from the basic purpose of the port, which is in part to avoid having to be stuck numerous times and get your arms all bruised up from trying to find a good vein from which to draw blood. However, I've had to agree with my oncology nurse that because my port has decided to be tempermental, it's better to try the blood from the arm first and then only access the port if I'm getting chemo.

When the lab results came in, the nurse came over and shook her head.

"What is bad?" I asked her. Last time it was platelets. Was it white counts? red counts? platelets again?

"Everything." she said, simply.

Terrific.

So no chemo. When I last saw the doctor, we discussed this possibility and I was told that if the counts were insufficient I just would miss this last dose, and still get the PET/CT scan next week as scheduled. I see the Dr. again on October 4th. Until then, I expect a couple of uneventful weeks of recovering strength.

I got an email from Irene, with whom I've exchanged a few emails over the past couple of months. Her mom is battling Non-Hodgkins Lymphoma, and Irene will be walking this weekend in the Lymphoma Research Foundation's Lymphomathon, this weekend at Fairmount Park in Philadelphia. Here's a link to Irene's page for this event - good luck, Irene!

Thanks for all your continued support and prayers.

Susan

Cycle 7 Underway

2007-09-07T17:57:00.000-04:00

Blood counts all looked good yesterday so the chemo cycle 7 has started. Predictably tired today but doing ok.

No Aranesp or Neulasta as both white and reds were good (hemoglobin was just a bit low but I squeaked by without needing the shot). I'm glad I didn't need the boosters as they really mess up with my sleeping and hopefully that will make for easier resting over the next few days. So I plan on laying low and hopefully next Thurs the blood counts will still all be good to get my last chemo treatment.

PET/CT scan scheduled for Sept 20. Next oncologist appt for Oct 4th.

Blessing in disguise, maybe, for being low last week and unable to get chemo. I was disappointed about being put off schedule, but I think the extra week did me some good, especially in that last Saturday John and I celebrated our 11th wedding anniversary. We're both not quite up to our usual cheer and festivities, but still it was nice to spend a quiet day together at home when I was at least feeling sociable. We spent some time playing Monopoly,
and then when I could no longer tolerate being whittled out of my money slowly and painfully, switched over to Uno.

Also on Sunday we were able to go to a Labor Day party and got to spend time with lots of people who we've been missing without our usual summer get-togethers. To all of my in-laws, it was great to spend some time with you and look forward to more soon.

Thanks to all of my friends and coleagues at work who sent lots of good wishes and cheer this week.

Special thanks to my stepmother, Trish, who in addition to her ongoing support, sent a beautiful note recently which brought tears to my eyes.

Love you.

Susan

Chemo Delayed - Low Platelets

2007-08-31T08:25:00.000-04:00

I've spent the past couple of weeks doing a lot of nothing, just trying to get some strength back; there hasn't been anything much to write about (which is not a complaint, uneventful is good!) and so no blog entries. I hope you have been enjoying the final few weeks of summer.

Yesterday I should have begun my 7th (and last, at least for now) cycle of carboplatin/gemcitabine chemo. It didn't happen. The blood test showed low platelets. Normal range for this is 150,000-450,000. If you have anything below 100,000 the chemo becomes questionable. Mine was 88,000. When the numbers are about 20,000, you could begin to have serious side effects, so I don't really have any dangerous situation at the moment, it's just that getting more chemo would reduce them further. (And I will refrain from playing with knives this week).

I saw my oncologist. She really wants me to get both doses of the chemo this time, since I've had 2 half cycles due to low blood counts in the past, and this is the last round of it I'll be getting for now. If I got chemo this time,starting out already with low platelets, then the chances of being able to complete the chemo next week would be even more slim. So a decision was made to delay the treatment one week. Instead of doing chemo 8/30 and 9/6, I'm now supposed to do it 9/6 and 9/13. I have a PET/CT scan set for Sept 20th, and my next Onc appoint is Oct 4th, where we discuss the results begin to plot for the next treatment possibilities.

Thank you all for your continued support, prayers, and well wishes. I have been touched by your caring and support more than I can mention here. Know that it is noticed and appreciated.

Have a happy and safe Labor Day weekend - the positive in this for me is that the white counts were good so I don't have to be as conservative about being around people! We'll hope to get out of the house a bit also. Take care.

Love,
Susan

Feeling more awake

2007-08-14T12:19:00.000-04:00

Just a quick note to let you know that the underwater feeling has gone away and I am feeling more awake. Still the same fatigue issues but at least I feel more alert. Have a great day!

Forgot to add..

2007-08-13T15:01:00.000-04:00

for Katie

Sleepy Days

2007-08-13T14:06:00.000-04:00

I feel like I've been under water for the past 30 hours or so. I've mostly been sleeping, but every once in awhile I get up and fumble around for a bit before going back to crash. I was suspecting the Neulasta to be the cause but the side-effects don't really mention it - I guess it could just be the additional dose of gemcitabine or maybe the combination of the two. The nausea has been a little harder to control also - well it was on Sunday.

Seems ok so far today, although I can't find a thing to eat that's appealing to me. In any case, I feel like I finally woke up from Saturday night, and somewhat rejoining the human race. It's kind of like a big hangover, but without the giggly fun dancing part in the beginning. (I don't remember the last time I did the giggly fun dancing part??)

OK, I checked in.. I might go back to bed now. Just kidding, sort of.

WBC Low but chemo anyway.. finishing cycle 6

2007-08-10T22:36:00.000-04:00

This warm and fuzzy guy is a white blood cell - apparently I don't have enough of them at the moment and so am being treated to an extra medication this week called Neulasta.

Even though the white count was down, my oncologist still wanted to go ahead with the chemo, since my last dose was also cut short and we don't want to keep delaying treatment.

For those of you who read my last frustrated post, to give my doctor credit, as soon as I saw her this week she first asked how I was, and then apologized for not getting to see me last week. She said if she'd known it would take so long she would have seen me first before sending me. ( I coulda told her...but.....) anyway, I thought it was thoughtful of her to consider saying anything about it to me.

No port troubles this week; my nurse is back from vacation and I think she has the hang of it, so that was a relief.

There is a plan.

Now that I have finished cycle 6, there is one more chemo cycle to go, and that will be it for this episode (for want of a better term?).

When I looked at my CT scan results, to me it did not look like the tumors had shrunk all that much. I asked the doctor to go over them with me - she said that the reports did not correspond to each other 100%, but that the overall shrinkage rate from the March scans to the July scans is about 50%. (from roughly 5cm x 4cm to 2cm x 2cm... although more complex than that example)

I learned something new - the type of Hodgkins I have (nodular sclerosis) can also leave scarring. So, she says, it is possible that even if all of the mass is not gone on a CT scan, it may not be active disease. So after I finish the 7th cycle, which will begin on Aug 30, I should have a PET/CT scan, which is also done to show metabolic activity.

We spoke briefly about possible radiation treatments later, but that isn't going to be decided until after the rest of the chemo and the PET/CT scan. We also talked briefly about transplant, which might also need to get kicked around again in September, after the results are in. No comment from the patient on this for now - too scary to contemplate.

I'm very tired right now - the Aranesp injection seems to mess up my sleep and so I haven't had enough, and we had to go back over to the hospital today to get the Neulasta, which can't be given on the same day as chemo, for some reason.

I get occasional reactions to the gemcitabine which looks like a sunburn (remember the red post, with my face..). Since the face incident, somewhere in July I had an odd version of it on the tops of my feet. This cycle, it decided to appear on my lower calves/shins, and it wraps around both legs. My feet look ghastly white beneath it, as if i'm wearing socks. The doctor took a look and said it is a reaction from the gemcitabine. It's odd because it is just like sunburn, only in odd places and shapes. It is warm to the touch and hurts a little like sunburn does, too. It was pretty significant last Sunday/Monday/Tuesday but by Thursday was mostly going away, but now I've had the drug again so I'm waiting to see where it pops up next. I should have taken a picture of my white-socks-feet just to entertain you all. Too late now, it's faded too much to catch the full effect.

I'm officially taking some time off of work to get some really needed rest. Thanks to all my work colleagues who have written encouraging notes to me - I appreciate them all. On top of the thanks to all of my family and friends for your continued support.

love,
Susan

Back on the Merry-Go-Round

2007-08-03T04:51:00.000-04:00

Well it was another crazy kind of chemo day.
My mom and I arrived at the hosptial at 10:00 for my 10:25 appointment. I was supposed to see the doctor first, get confirmation that chemo would continue after she reviewed by scan results, and then go straight from there to chemo. Since there's also the issue of needing to get bloods drawn for a CBC (Complete Blood Count), it is (usually) decided to do that first then go for the Dr's appointment, so while I'm with the doctor they can also run the blood tests.

Immediately port-a-cath troubles present themselves, with difficulties accessing it. Although I am minutes away from seeing the doctor (already sitting in the exam room), I am sent up to the CVIR unit to test out the port. I tell them that I have a Dr's appointment.. someone goes to talk to the Dr. but still they come back and tell me to go to the CVIR.

Since this is my third trip up there (they are starting to recognize me...) I was not surprised when this whole process took a long time, like a couple of hours. Also, my hero Ed, a nurse who twice previously was able to access my port with little trouble, wasn't there today. Imagine, the guy taking a vacation when I will need him, after he so well raised my expectations by telling me 'just tell them to call Ed, I'll come to the infusion ward and get it for you, no problem'. (sigh!) anyway.. no Ed, nobody coming to infusion ward, me going to CVIR unit, hours passing.

Oh, and since they don't know if something might be wrong with the port, I might need to have some sort of surgical procedure which means I can't eat anything.

So this going on and on, and I'm stuck up there in this unit. In the meantime, I remember that my original appt with the Dr had been set for 2:00 PM and her nurse called me a week ago to reschedule it to 10:25. As the hour is growing later, I'm starting to wonder why the appointment needed to be rescheduled. Is the Dr. leaving early (seems likely!)? Why, when I was a few minutes from seeing her, did they send me up here, and is anyone going to take care that I get to see her before she goes? (You have a 50/50 chance of getting this one right, what do you think?)

OK so you get that one right. But don't you think they should before ordering me out of the dr's room to be examined?

Trying to be smart, I send my poor mother off on a questioning session to let them know I'm still up in CVIR and I need to talk to the dr. I need to know my scan results, be sure the chemo orders are in , and I need to talk about the issues surrounding my ability to work at this moment, as my energy just goes lower and lower all the time (more on that later). Thanking God once more for the angel that is my mother, I watch her go off and then head to the next part of the CVIR fun. Sure enough, when I get out and find her again, the Dr was leaving within 15 minutes of when she found her. So I never got to see the doctor, but my mom got the basic info, such as the CT scan showed some shrinkage again of the tumors (good news) and I should continue with the chemo this time the same... reschedule an appointment for next week with the Dr, and we gave them paperwork to get my leave issues worked out.

I return from CVIR (port access, all tests show everything ok... third time...) and the nurse proclaims me "white as a ghost" before I ever even get to have any chemo. Of course it's now well after lunch time and I haven't eaten since dinner the night before. I'm not in a great mood. I need food. In my fantasy world, I would already have seen the doctor, had all of my answers, had my chemo and been home by this point. My angel of a mother is listening to me complain about who-knows-what because I just am about off my rocker with being annoyed at this point. But it's ok. I get it all out of me by venting, and by the second chemo infusion I'm back to telling silly stories about my cats. I hope they are endearing enough to make up for all the other crap.

We leave at 4:00 PM. Lovely traffic.

About my energy level.. (or lack thereof) - I last had chemo July 11, didn't have it July 19 because of low blood counts. In prevous cycles, even with the 1 week break between cycles I have usually been feeling pretty good towards the end. It's become something of a morbid joke - hey, I woke up today feeling pretty good. Oh, that's right! Due for chemo again tomorrow! That seemed like a downer enough, but this time, even after an extra week off, I never got to feeling that much better. I am just really tired all the time. (which is an understatement but...how else do you say it?)

I've been getting through work somewhat ok (albeit on a reduced schedule from my "normal" worklife of 2006) but that's it. Energy to do anything else is a real commodity. I'm behind on everything in my personal life, and I keep thinking these blood count issues are also a sign of this depletion. I feel like I could just rest for weeks and do nothing. So, although I've tried to be very conservative about taking time from work, I am getting to the stage that I think I need some time off to recoupterate and rest, and hopefully get my energy back to where I can manage both again in a few week's time. That's my thought.

This is why you guys don't get to see too many updates in between. Thank you for continuing to check anyway.

As for today, I am doing the usual sleep for only a couple hours even though you're exhausted thing after getting chemo and the Aranesp injection. by the way, my hemoglobins were 11.5 - if I make it to 12 I don't have to have the shot. I was grumbling about that for awhile, too. I know I need to be grateful that such medication exists but it also has its side effects.

Thanks to John, Mom, Mike, Dad, Trish, Mona (Mom), Mona, Dana, Sheli, Tim, Staci, Terry, Kelly, Camille, Uncle Jack, Jo, Chris, Kara, Tina, Karen, Phil, Chrisy, Jana, Kathy, Rachael, Aunt Eileen, Uncle Mike, Uncle Bob, Aunt Betty, Marcie, Gina, Janice, Irene - and surely I forgot someone, please forgive me - for all of your messages, emails, calls, and shows of support. It is all very, very appreciated and noticed.

For Terry

No Chemo - Low Blood Counts

2007-07-20T08:09:00.000-04:00

The title says it all!

I'm feeling fine except for the usual fatigue. I'll be keeping the same schedule, which is to have a CT scan done next week, and followup visit with the Dr and (possibly/probably) the next chemo on Aug 2.

Thanks to all of you for your notes and good wishes. I'll be heightening my attempts to try to avoid the germy situations for the next little while...

Love to all,

Susan

Chemo cycle 5 started

2007-07-11T23:57:00.000-04:00

Just a really short note as it's nearing bedtime to let you know that the chemo today went smoothly. Just the usual side-effects. The Mysteries of the Port-a-Cath seem to have been revealed, I am so thankful for that.

Hemoglobins low so still getting the Aranesp injection.

love to all,
Susan

2007-07-04T10:00:00.000-04:00

Happy 4th. Have fun! Be safe!

I'm ok with the usual tiredness and some water retention issues. Kinda worried about blood counts as I was already on the low side last week before getting chemo. I'm taking precautions and trying to get some extra rest. I might go to the lab tomorrow to get it tested.

L,
S

Port access first try (woohoo) - counts low but .... chemo ok

2007-06-29T00:19:00.000-04:00

Today was a good chemo day. The traffic getting into Philly was amazingly light and easy (even for the driver; it's easy for me, the passenger, to say so!) and the blood from my arm came with only 1 stick.

My blood counts did fall and were borderline on some areas but still fell within a parameter to be able to get chemo. This means I'll want to be more careful again over the next while to avoid infections. Sick people, let's visit by email or phone.

And news of the big event you have all been waiting for: with the same size needle used last week, and with moving to a room with a kind of table that goes flat - yes! - first try, "boop!" the needle goes in and works. So here is hoping that all of that excitement is done and the port will be the nice easy tool it is intended to be from here on out! hooray!

I gained 4 pounds in one week (yikes) which I think is mostly water weight. Or maybe it was that butterfly birthday cake Terry brought over last Sunday. Not sure.
I did have some help eating it. I had been kinda holding steady after an initial gain after my first chemo...

The usual pale skin, tiredness (lovely 3 hour nap mid-afternoon today), and -well I think the best word right now is "unsettled", but considering recent experiences today was terrific.

Next chemo, cycle 5, starting July 11th.

Extra special thanks to Camille for being my chaperone today.
Love to all,
S

Feeling good...

2007-06-27T20:59:00.000-04:00

I've been feeling pretty good, provided I get my three hour evening nap. Otherwise I might be a little cranky. :)

Keep your fingers crossed for tomorrow and no port issues. I have a nice little pen mark diamond around the spot where it had a successful access last time. Hopefully this can be repeated!

Also crossing fingers for good blood counts.

Thanks for all
your good wishes.

Another Crazy Port Day - but chemo done and ok

2007-06-23T12:00:00.000-04:00

Yes, well, it happened again.

Port access troubles. After nearly 2 hours of trying, I got sent back to the specialists again with the X ray machine to check it out. Even there the first time no luck. Sent me back to the room after an hour's wait to pull out the X ray. I had the same nurse who was able to access it three weeks ago.

I am hoping we have discovered the secret to the port now. I think it is a combination of the needle size Uncle Jack mentioned, and the positioning of me. Has to be "laying flat", says Ed, who managed to successfully access the port. I left with his promise that if this happens again they can call him to the chemo room and do it there, and now have written down his name! In the infusion room, there aren't any beds. So they have me laying back, but on a recliner, which is never completely flat. Ed says this makes all the difference. So I guess they're going to have to find a bed or stretcher or something to use for five minutes to be able to do this. You'd think this wouldn't be too big an issue in a major university hospital...

Four hours later, once the port finally had a needle in it, chemo could start. Chemo was thankfully uneventful.

Good news - my hemoglobin was close to normal range for the first time since all this started. Didn't need to get the red count injection.

I was completely exhausted by the time we got home (left house 7:45, got home 5:30) and I have found that my sleeping issues are much better without the injection.

Since I had been a few weeks without chemo and was feeling pretty good, I felt really pretty drug down, but I think it is more the sudden contrast than feeling worse than before. There's a difference between feeling good and feeling relatively good for being on chemo.

hello again to the latter.

The plan: skipped the second dose of the third cycle altogether. So this is the first dose of the 4th cycle. Second will come next week, 6/28. If all goes well, a week off, then begin 5th cycle the week after July 4th. After the 5th cycle, CT Scan again, looking now towards the end of July.

Love to all,
S

Ultrasound not interesting, chemo coming

2007-06-21T01:06:00.000-04:00

I saw the Dr today (Weds 6/20) and she said everything looks good. The ultrasound did not show any stones so the pain might have been gall bladder or liver, but since the pain has also gone away, that is just remaining a mystery for the moment.

I am going to start Cycle 4 tomorrow, even though Cycle 3 really never was finished because I missed the second dose of Gemzar. She said it was better to just skip it, get a chance to recover and then start with the next cycle. As I have been feeling pretty good over the past week, I can understand that way of thinking. Hopefully the next round will go more smoothly.

I'm a little nervous (I think the more appropriate expression would be 'gun shy') about the port access tomorrow. Going to bed now and hope for the best in the morning.

Next CT scan will be in another month, then Dr again in early August.

Love to all,

Susan

Guess what I did?

2007-06-19T23:28:00.001-04:00

**on 6/19 I began to write this but was interrupted by a thunderstorm and subsequent power outage!

I still have a lot of hair!

But I was losing enough that my longer hair style was no longer working; it just weighed it down too much and even though I tried to have layers cut into it (the "before" picture here is still actually after about 2" were taken off a week prior) it wasn't enough. I had to really go shorter to layer it and get rid of the obvious look of thinning hair - but I'm really happy with the results. I don't feel that the hair loss is that obvious now.

By the way, I didn't notice until I loaded these pics into my computer that I was wearing pink. This is really funny, as I mentioned in my previous post that I think I only own 2 pink shirts. Now you've seen them both. :)

Doing well... and thank you

2007-06-19T22:56:00.000-04:00

With apologies for not fulfilling my promise of more details about what I have come to think of as The Crazy Port Day. As a second thought, you probably don't really want to know! It's been a good couple of weeks without chemo, must admit. For the past week or so I have been feeling pretty close to my normal self, although I do still get tired faster and have to watch not to overdo it.

But I got to work a full week, which worked out very nicely as something important was going on there and I was glad to be able to handle it well. Got to spend some time with family over the weekend and had enough energy to not worry about when I was going to be able to rest; it's been nice.

My "vacation" (which mostly consists of going to work and cleaning house..hmm..) is probably over now as I will see the Dr. tomorrow and expect to get chemo again on Thurs, but I wont know for sure until after the doctor visit.

A few comments from your comments:

Thanks to everyone for the "pink" comments. I think I own 2 articles of pink clothing. I may have to reassess my wardrobe. I just felt like sprucing up for the change of seasons in here, and once I chose the background I remembered that picture and it all fell into place. Anyway, you're too kind ;)

About the Port - when I'm in a bad mood I feel about ready to take care of the thing myself (Don't worry, it's just talk). For awhile after the last episode it looked like I had a bright red Quarter right there on my chest. Fortunately it never got infected, no fever, no oozing... all good news. In an optimistic mood I think that now the nurses will have learned the trick of it and I won't have to be stuck seven hundred times for it to be working (=exaggeration). That's kind of the point of going through the surgery to get a port, after all, to not have to deal with being a pin cushion for awhile (=sarcasm). So I'll try to remain optimistic and we'll see how it goes. (=trying to keep the smiley thing going)

About Steroids - When I get chemo I get some form of steroid in a drip, but I am not on any oral steroids later.

About the RED post, which I later removed because I thought it was maybe a bit too much for the "blog" - Uncle Jack says the red skin is caused by the gemcitabine, (which is also causing my water retention issues). It lasted a couple of hours. We'll see what happens.

*********Update 6/20 - asked the Dr about the redness. She said probably is a reaction to the drug, but as it is happening a day later and not immediately doesn't seem to be a problematic allergic reaction. Just to keep an eye on it and basically things like this are not surprising and will happen.

About work: I try to miss as little time as possible. Obviously I have to miss time when I am getting chemo and for doctor's appointments; other time it is "play by ear". Those I work with have been very supportive and understanding about the difficulties in this whole process. Hopefully I'll be able to continue, but it may get harder if the blood count issues don't get resolved. We'll see. In the meantime, I'd like to keep my life as normal as possible.

About the pain in my side: It went away. I did have an ultrasound done. I'll speak to the doctor about the results tomorrow.

About blood building injections: I am still getting aranesp which is for red blood cells; I still am anemic. I am taking iron supplements also. Haven't so far been given anything extra for white counts, I think it will depend on what happens next. Have Had No Fevers!!!

About all of your love, support and prayers - THANK YOU! Every message helps, whether here, privately, phone or in person. It is all appreciated, and I love you all.

Susan

Long day!

2007-06-07T20:52:00.000-04:00

Hi there..

Maybe I will post an addendum to this later with more details, but since I know you are reading and maybe worrying now, I wanted to make a quick update. I'm too tired to write in a lot of detail.

I went for chemo today; again there were problems accessing my port. This is an understatement. However finally it worked. Unfortunately, after all that, my blood counts were too low to be able to have chemo. To give a picture of time - I got there at 9:30 and finally left the infusion room at 11:45 - to basically get blood drawn and be told to go home (with a dramatic flair ).

In the meantime, over the past week I have had a pain in my right side, source unknown. My oncologist decided to send me for an ultrasound. Good news: was able to get an appointment today. Bad news: Appointment wasn't until 2:30 and I couldn't have anything to eat. Also I couldn't really go kill time at the mall or something, due to low blood counts. We sat in the car for awhile and then took a walk. I'm grateful the weather cooperated. Will get the ultrasound results at some later point.

Left home: 8:15, arrived home: 5:20 - similar to a workday!

So I'm really tired, and probably not going to be going out much over the next few days. Otherwise I am ok. Except for the mystery pain in my side. Missed chemo this week, no chemo next week, next chemo date is June 21.

Love to all,
S

"It was an access issue."

2007-05-31T17:48:00.000-04:00

Cycle three chemo started today. For awhile it looked like it wasn't going to start. Two different oncology nurses could not get my port to work for them; in fact couldn't get the needle into it at all.

This is like: (needle stick) ..nope.. (needle stick) ... sorry... let's try this.. (needle stick) .. nope... one more time.. (needle stick) .. no..sorry. Let's get someone else to try.. (needle stick) nope... (needle stick)... sorry... let's try this.. (needle stick) .. nope... one more time.. (needle stick) .. no..sorry.

After all of this they decide to send me upstairs to the specialists in this type of thing. Some time, paperwork, and waiting later, one more person tries.. Nope. I end up with XRay stuff - the concern was that the port might have turned itself around?

But no, it looks fine on the X ray, not turned. After another attempt it was discovered that if I lay down flat they can access it. Of course I didn't have to lay down flat the 4 previous times it was being used for the last 2 chemo cycles - but who knows?

So.. we arrived at 8:45 for my 9:00 appointment (left home around 7:25 and had a small breakfast there before going up, thank goodness!). It was 11:30 before I got back to the infusion room and almost noon before the chemo got going.

My skin has done its Halloweenish impression of a ghost. This made my freckles stand out. Then the nurse told me, on my way out, to be sure to use sunscreen. I don't have any sunburn and have been careful to either be out of the sun or to use sunscreen. So when she said "Look how red you are!" I didn't get it. I am not red, in fact my skin is ultra-pale. Mom pointed out to me that my normally innocuous looking freckles turn a nice mean shade of red-brown when my skin gets pale. So we decided this somehow mimicked sunburn to the eyes of someone else. I do know that I have, on more than one occasion, been alarmed at the dark brown spots on my legs following chemo. These are just moles that normally cause me no worry; it's just with white skin it's amazing the difference these little things take on in the way they look.

My complexion is normally so light anyway, that I have a bit of trouble getting my head around the "pale skin" thing. But it's for real!

So I feel kind of icky with the usual post-chemo infusion blues, and really tired (what else is new?) - but otherwise ok. I was glad I got the chemo today, because for awhile there was concern that the port might have a real issue which could even involve surgery to rectify. So, all's well that ends well.

Love to all,

S

For Gracie

Some good news! .. and Carry On

2007-05-25T22:41:00.001-04:00

On Thurs 5/24 I went to see the doctor for the results of the CT Scan. The news is that the masses in my abdomen have shrunk. She said the reduction in size is significant enough to be pleased with the result from this chemo regimen and she wants to continue it for another two cycles. I am on board with that idea, and so I am going back for chemo again starting this Thursday, May 31st.

The fatigue lingers but it was worse last weekend and Monday than it is now, so hopefully I'll continue to feel better each day through the weekend and next week (at least until Thurs) and be stronger again when it starts. I am having some water retention, which I learned is a side effect of Gemcitabine, so have a new prescription to help get that under control.

My appt with the bmt oncologist is going to be postponed until we get through these cycles again and then see where we are.

Be careful out there this weekend - if you're driving please take extra care. Have a wonderful holiday weekend.

(And for my friends outside of the US - have a wonderful normal weekend!)

Love
Susan

CT scan done.. now wait.

2007-05-17T18:40:00.000-04:00

Checking in here - Aside from fatigue (and pale skin) I have been fine since the last treatment. The fatigue is increasing, though. I'm glad no treatments this week or next. I'm still working, but by the time I get to the end of the day, I'm done! Today no work because I had to be in Philly early for the CT Scan. I had some hopes of getting a few hours in this afternoon but I was honestly too bushed.

Because of mild shellfish allergy, I have to take pre-meds (steroidal) before the CT scan, even though I've never had any problem with contrast. The steroids are a bit problematic because I can't sleep well with them (got about 3.5 hrs last night) and they also seem to make me sweat a lot. I base this on the fact that this is the second time I took the CT pre-med and the second time I slept lousy and woke up in sweats. So, that's not really major but puts a bigger damper on my energy level and productivity.

Not to mention my mood ;)

Love,
S

Chemo Cycle 2 complete

2007-05-10T17:33:00.000-04:00

Feeling the usual stuff, but mostly ok. Tired, blah. Last week I felt pretty ok until Saturday, so we'll see what the weekend brings. Of course, this time only 1 drug.

CT scan appointment is next Thurs 5/17, Doctor's appt the following Thurs, 5/24. Not sure about next chemo, if any, or when.

for Timmy

Added 5/11 - I forgot to mention that I'm still anemic, hemoglobins went down again. Another injection, need to continue to be diligent about the iron intake. (it's the extake that's the problem!)
Yes I know that isn't a word, maybe oughta be! What did we used to call those? Sniglets?

Feeling a little better

2007-05-09T18:31:00.000-04:00

I realize my blog posting this morning was maybe less than cheerful, so in case you're worried, want to let you know the day has shaped up better. I feel better today than I have since....

...hm. Last Wednesday. You know, the day before the chemo.

Well ok! Tomorrow, game on again. Next scan is May 17th.

Uncle Jack - my eye is (mostly) better. If you look close you might see a little droop. It's really in my eyelid, nothing actually wrong with my eye or vision.

No more treatments scheduled yet. We'll do the CT scan May 17th and then it's time to talk to the doctors again about how well the treatments worked and what we should do next.

It catches up to you...

2007-05-09T04:44:00.000-04:00

I'm managing, and thankful that I don't have any serious complications.

This week has been a bit tougher on me; since Saturday I haven't been able to shake the tired feeling, despite spending a lot of time trying to get rest and sleep. The nausea was worse this time but still under control. Unfortunately the stuff that controls it also causes constipation and GI issues, so it's a tricky balance to get the right meds and foods in to avoid discomfort and problems.

I noticed yesterday that I was losing a lot more hair in the shower. I was almost ready to think I might escape hair loss: 1 drug I am taking has it as a seconday side-effect (not everyone gets it) and the other drug lists "brittle hair" as a side effect. I've been trying extra conditioner to help against the brittle stuff, but if it falls out there really isn't any way to stop that from happening. It's happening at the follicle level. Hair follicle cells multiply very quickly like cancer cells and chemotherapy drugs don't know how to tell them apart. Normally it occurs 2-4 weeks after starting chemo. I'm in the 4th week now, so I thought maybe I was going to slide by this time.

My doctor said I might not lose my hair, it might just thin out, etc. I'm wondering how much it can thin out before it starts to look straggly and stringy, and when I should bite the bullet on going for a shorter 'do.

The first time I lost my hair I promised myself I'd never put myself through doing it slowly again! But I also don't want to cut it off if it could stay nice for a little longer.

Anyway, hair is really the least of problems, but these are still decisions to make.

The CT of the sinus didn't show anything, but after a day or two of the antibiotic the swelling around my eye did improve. Some kind of infection?

Tomorrow, more chemo. Then that's it for the 1st two rounds we signed up for. Scans will be done the week after, then we'll see where we are and what decisions come next.

Love to all.

"Ding!" goes the bell. "Round 2!"

2007-05-03T20:53:00.000-04:00

A long day. My Mom and I started out from my house at 9:15, and we got back home at 4:45. Just slightly shorter than a work day, and believe me, I'd much much much rather be at work.

There was a moment when there was a possibility that I might not get the chemo today. Reason: last night when I was showering I noticed I had tenderness around my right eye. This morning, I could tell there was swelling all around it. Nothing is wrong with my vision. My oncologist thinks maybe some kind of sinus infection, but I am not having any fever or chills, so that is in my favor. She decided to go with getting the chemo and also getting a CT scan of the sinus to check if there is anything going on in there causing the mild pain and swelling. If not, then we'll have to probably go see another specialist to see what the situation is. In the meantime, my oncologist prescribed an antibiotic and I did get the chemo. I also got the Aranesp injection which seemed to help me a lot last time with energy and red blood counts. And of course, anti-nausea good-stuff.

Note: I have had a couple of sinus infections over the past 5 yrs. My experience has been that they start with a fever and generally knock me flat for nearly a week. I've never noticed any kind of swelling or the type of tenderness I am having right now. But it's a new ballgame, right? Who knows.

(OK now 2 sports analogies made, that might be enough for one post)

The sinus CT scan was unbelievably fast and easy. If only every procedure could go so smoothly (and the people were very nice, too, which helps so much, from the Onc's office getting me an appointment that quickly to the techs at the dept, thank you).

Since the chemo infusion I've had the same side effects as in Round 1, so it is still tiring and uncomfortable but not surprising. Mostly I get pale, a bit clammy, generally feeling unwell. I am in fairly good spirits but also irritable. That means I am cheerful enough until something isn't going my way, then look out! for about five minutes, then i get back to my cheerful enough state.

Ding! Ding! In this corner...

http://www.research.vt.edu/resmag/sciencecol/cancer97.gif

Thanks and love to all of you who have been so supportive through all of this.

No News Is Good News

2007-04-24T23:32:00.000-04:00

In case you were wondering...

I'm feeling pretty good. I'm working, doing normal things. Minor issues with fatigue and other small things, but nothing to write home about. I guess these days we say nothing to blog about.

Hooray! It's worth another happy smilie mug. I hope you're feeling good today, too. (and the weather is beautiful!)

Got the Blogger authentication stamp of approval

2007-04-19T22:07:00.000-04:00

Officially we aren't SPAM. Back to business! (Blogger turned off my ability to post yesterday, see comments in April 13th section, but we're now officially approved as real humans and not robots.)

Today I really felt pretty good. The zofran took care of the nausea and I think the injection for anemia (with b12) has really given me the boost it is supposed to. I didn't sleep very well, but once I got going this morning I got through the day fine. I wasn't sure I'd make a full day of work, but I actually did and even stayed about an hour longer. Who knows what tomorrow brings, of course, but I'm grateful to be feeling pretty good today!

Done with Chemo for the month! (April 18th post)

2007-04-18T22:02:00.000-04:00

That's right! Today was the 2nd and last chemo for April. Next day (maybe) - May 3rd. This will start cycle 2, if the blood counts are in good shape. Otherwise, the chemo may wait until the following week.

Only received Gemcitabine today. The symptoms were pretty much the same as last week, but better because a) only 1 drug, and b) hardly any pain left from port surgery.

I also saw my oncologist. She wrote orders to give me an injection to help with anemia (low hemoglobin count) and also a sleep aid. I have been sleeping a lot but sometimes I'm having trouble sleeping at the right time. I will see her again for my next date with the infusion room on May 3rd.

Thank you all for your thoughts, prayers, and heartfelt messages, both public and private. I hope your week is going well for you.

love,
Susan

Turns out it was all a pain in the neck...

2007-04-13T23:36:00.000-04:00

It took me several hours to figure this out, but most of the pain I was having over the port turned out to be all in my neck. I'm trying to imagine the position I must have been in while under anesthesia that would cause so much discomfort later. I realized this as I was sitting back in my recliner and couldn't get up again because of the pain. Eventually I figured out that if I supported the back of my head with my hand, most of the pain eased and I could sit up. (obviously not at my sharpest stage here... but ok!) .. it is much better now; Tylenol is enough to keep it at bay.

Uncle Jack asked about follow-up meds. Yes, I have 3 different anti-nausea drugs on hand, all generic brands of: Zofran, Compazine, and Ativan. So far I have only taken the zofran. It works! I've tested a little "do I really need it?" and sure enough, when it wears off I can feel a pretty steady decline in how well I feel. I will probably stop taking it tomorrow and switch to compazine if still needed.

Mostly I am feeling ok; just pretty tired. My color is back to something like normal. It has been really hard to get motivated to do anything, though. I am planning to make a short trip out tomorrow for some shopping; I think it would be a good idea to get out and get moving around. I do plan to go back to work Monday.

Next chemo is next Weds.

THANK YOU ALL for your support. The messages, cards, and generosity I have received are wonderful and I am so grateful for all of you to be in my corner.

"Extra Edition" - Click here for a peek at some very special cards sent to me.

1st chemo done and at home

2007-04-11T17:23:00.000-04:00

John and I were at the hospital for 4.5 hrs; some of this is just time getting set up and making sure all the chemo orders were straight.

As it turns out, I get both chemo drugs the 1st day, and next week go back for only 1 of them again. I will also see the onc again next week.

I felt mostly ok during it. As I was getting the 2nd drug, towards the end of the time, I dozed off a couple of times. When I went into the bathroom at the end I noticed I was white as a sheet! Very pale! But I felt mostly ok until the drive home. I think the motion plus just the crazy traffic patterns at 4:30 pm weren't so good for my stability. I made it home without vomiting however, though, hooray and I think John was happy too!

I had some saltines and feel a little better now, but tired, too. I didn't sleep very well last night either, partly from nerves and partly from being uncomfortable with the port... still having some pain from that, as expected. Not bad, just can't find a position to sleep in that doesn't cause some discomfort. Port worked fine, though, so that's good news.

I'll try a light dinner..and we'll see how it goes. Not too sure. Anyway, I hope this quells immediate worries - will just be taking it easy for a couple of days here and then will let you all know how I'm handling it.

Love,

Susan

Port Surgery ok

2007-04-10T21:54:00.000-04:00

Just a short note now to let you know the port surgery went well. I'm having some pain but not too bad. Need to rest up for tomorrow. Love to all, thanks for the thoughts, prayers and good wishes.

It's a portmanteau!

2007-04-08T23:30:00.000-04:00

Yes, it's a portmanteau. No, that isn't what I'm getting put in my chest this week - that's a port-a-cath. I'm not sure how well the surgeon would handle a portmanteau. I don't think I'll distract him with that kind of question.

What is a portmanteau? "Blog" is a portmanteau. So is "spork". (Uncle Bob - does that clear it up for you?? No.. not Spock! spork!)

Seriously, since I started this thing a bunch of people have asked me "where do they come up with 'blog', anyway?"

According to the wiki definition, hey that's an online encyclopedia which can be added to by anyone, in case you didn't know... blog is a creation of web log:

The term "blog" is a portmanteau, or, in other
words, a blend of the words web and log (Web log).

Say it a lot of times fast and you end up with blog, so apparently pioneers in the online journal world somewhere down the line decided that was the new and easier way to refer to those running journal entries posted for all the world to see. (we blog turned out to be a fun play on words with a slight alteration of spacing for web log, according to wiki.)

This ends the linguistic lesson.

There isn't really any new news, but I did want you all to know logistic arrangements for this week's appointments are: Mom taking me to surgery, John taking me to chemo.. appreciate your thoughts and prayers as I think this week will be a challenge for me.

(thanks to everyone who offered rides - I may take you up on it, yet :) )

Surgery for Port II

2007-03-30T17:36:00.000-04:00

Has been rescheduled from April 6 to April 10th. Chemo still set to start the next day, April 11th.

Still working out the logistics...

Kind of ironic that after all the fuss it is just 2 days earlier than the original appointment...

Chemo is scheduled - April 11

2007-03-29T19:12:00.000-04:00

I got a call from the oncology nurse today - and now have an appointment for chemo to begin April 11th.

Originally I had a doctor's appointment that day; I have to call the nurse back because I think that appointment should now be moved forward.

Surgery for Port

2007-03-28T17:50:00.001-04:00

Is scheduled for April 6th.

Port-a-cath, Port-a-cath, Oh Port-a, port-a-port-a...

2007-03-27T19:03:00.000-04:00

All around agreed the best thing to do would be to have a port-a-cath placed. (Central line).

I keep saying "installed", but I don't think that's quite right. I'm not a car, or a computer, etc. In any case, someone professional who is good with cutting instruments and careful about how they use them is required to do this next part. Once that is done, chemo can begin.

As amazing as this seems to the rest of us, somehow the department who handles placing ports into the bodies of those fighting cancer and soon to be having chemotherapy finds it acceptable that an appointment requested on March 20th should be made on April 12th. That's over three weeks of waiting and delaying treatment.

Fortunately for me, my oncologist also doesn't think this is the right thing to do. I was placed on a cancellation list to get this procedure done, and have spent the past week waiting to see if there would be an opening. I got the call from the nurse today to tell me there hasn't been one. So tomorrow I am going to see a surgeon instead, for an evaluation meeting and I assume the surgery will be set for next week sometime.

Appointment: Chemo drugs and port

2007-03-19T22:25:00.000-04:00

Today I met with my oncologist to review the "Consent form"and get information on the particular drugs I will be getting.

These are:

Gemcitabine and Carboplatin

I'll get these intravenously and approximately at Day 1 and then Day 8. That's it for the cycle, which is 3 to 4 weeks. So at day 21 or 28 the second cycle will start. I'll see the doctor in between and will be monitored...

Before this starts, we want to investigate the possibility of having a port (central line) put in, to minimize the troubles with finding veins. I had this done the first time and it did seem to make the process easier. As soon as I have preliminary blood work, I'll be set for an evaluation for this to see if it will work for me again. Once the port is placed (if it is) then I will be ready to start the chemo.

Tomorrow a CT scan is being done. This is to have a base line info of where the disease is when we're starting.

How it all began (again)

2007-03-19T22:14:00.000-04:00

Well, I guess I thought I was done with this stuff for good - but that isn't how it has turned out.

Here's the bullet point edition on how this all came about:

December 15 - "Routine" Pet/CT scan is done, following up routine exam. Everything seemed fine.

December 22 - Call from Doctor - let's get an MRI to get a closer look...

December 29 - MRI is done, followup appt set for Jan 22nd

Jan 11 - Extremely alarming phone call from Dr's office - appt cannot wait until Jan 22nd.

Jan 15 - Informed by Dr. 2 masses in abdomen, could be recurrent HD.

Jan 24th - CT Guided Biopsy to retrieve cells for testing. Reveals cells that are "highly suspicious" of Hodgkin's Disease. Not entirely confirmed.

Jan 29th - met with BMT Oncologist - review of possibilities. 1st step - firm diagnosis.

Feb 9th - Surgery for biopsy

Feb 20th - BMT Oncologist confirms - HD. Set up various tests to determine treatment possibilities.

March 7th - BMT Oncologist and Oncologist agree first step to be chemo. Possible look into transplant possibilities later, but getting the disease into remission must be the first step. Which form decided.

March 19 - met with Onc to review info on chemo.