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This page is for friends and family to check in on Susan's progress as she undergoes breast cancer treatment. I will update this page as often as I can.
Susan and I thank you for your prayers and support while we travel down this unfamiliar road.
If you would like to send Susan a note, please use ThinkOfSuz@mdrvideo.com so she can check that box in private at her leisure. Today's HCON status:
1-23-10
Tougher than it should have been.
Easier than it could have been.
He was struggling. Trying to find words. Standing in the optometrist’s office after pouring over the children’s frames. Their daughter was gazing into the mirror not quite understanding the whole process yet eagerly awaiting an answer on whether or not they liked the ones she had picked.
“Maybe try these”, her Mom said as she gently removed another frame from the array of multi-level lexan shelves.
“Okay”, came an excited reply
This had been repeating for a few minutes, but not too long.
He kept looking over at his wife, admiring her fortitude through all that had happened the past year. He had almost lost her a year ago October he remembered. Feeling lucky back then, not knowing what would come only a few months later.
His mind wandered.
He looked again at the little girl smiling at her resemblance in the mirror. She was grinning widely now, obviously excited to see what was peering back at her through the small rectangle.
He had almost lost her too.
“I like those a lot!” he blurted out, wondering if either of them knew how often these thoughts barged in and took over. He hoped not.
His wife was standing there, probably wondering when this little girl grew to be an 8 year old – a wonder they both shared about all 3 of their children. He figured it was a common wonder for all parents.
He stared at his wife for a while, maybe trying to memorize the contours of her face or the oddly interesting way that her hair was starting to grow back but mostly just thinking about what an amazingly wonderful woman she is and how much he loves her.
“I think these are the ones” came a confident statement from the 8-year old. He couldn’t comprehend how grown-up she looked with the oblong, thick purple frames resting on the bridge of her nose.
Weeks passed, the new glasses became old news and life was determined to return to that “normal” they so longed for almost a year ago. It seemed like it was being forced. He watched her dive back into the deep end of her job and saw what it was doing to her. He hoped it was a way for her to find that normal again.
She seemed crabbier lately, most likely just tired of the whole thing. A lot of people asked him how she was doing, and it confused him now that his most common answer was “Good, she’s cancer-free and starting to grow hair. And cranky”. The cranky part was what he thought about most often.
It was borderline magical the way they had connected with each other all summer. Holding hands constantly, snuggling on the couch, watching their kids be kids. It was what things were like before life got certifiably nuts. He didn’t have any regrets, but thought about the way life goes quite a bit now.
So he thought maybe the emotions could be likened to an auto race: you go through something like this and of course it’s traumatic and frightening and amazing all at the same time, and there's this huge group of people cheering you on, keeping you focused on getting to the end of the race, then when it’s over maybe the emotional fuel tank runs dry. You find a way to get to the finish, and you're glad you made it but then something happens to you - you can't hear the crowd, there's no trophy in sight – no huge check to cash. And the damn car won’t fire.
So there they stand, acres of open pavement all around, no markings anywhere. Can’t even see where they just came from too clearly anymore. Is that fog? Feels unfamiliar. Looks like some people way off in the distance so they start walking, together.
Time for some real healing...
She still needed his hand though, a few cosmetic items to check off the list yet. Well, she thinks she needs him – he knows how strong she really is.
He figures the struggle will continue for a while as there are more things shoved aside during a time like that than anyone realizes.
One evening they were playing the Game of Life with the kids when something strange happened: Everyone playing got stuck on the little rectangular space that was marked “Write a Best Seller”.
His mind still wanders.
I want to thank you all for supporting Susan and our family through all of this – no matter if you are relation, friend or acquaintance, I know you helped her get through this so well.
I hope that my writings didn’t get to weird – it’s just what bounces around in my head.
Susan my wife, my lover, my life – I am so proud of you and so thankful that you are still here to be a mother, a sister, a daughter, an aunt, a friend. You could have done this without me, but I am honored that you were able to share all of those moments with me. From the “Hey, honey – feel this…” to the “How do they look?” you have amazed me time and time again.
I Love You. _________________________
11-3-09 0735: We are at the Surgery Center in St Louis Park, and a nurse just came to get Suz to take her to pre-op. Suz is a bit more emotional today than she has been, but I suspect that is only normal for something like this. No headache yet, just dry mouth so I hope they get to her quickly before the dreadful dehydration headache sets in. I am told I will be called back to be with her in about 20 minutes. The procedure is scheduled for only 50 minutes, which surprised us both, but then there is the recovery and such, so we will be here for a while. I'll update again when they take her to surgery.
0840: Not too bad - they are on schedule, so the Dr came in, made some marks and off Suz went. She cries at everything lately (those are her words) so of course she was in tears as we said culuvubye. The Dr has this almost shocking confident routine-esque way about him that we laughed at and remembered admiring the first time we met him. I said "is it really going to be 50 minutes?" meaning I thought that was really fast, and he replied "na, probably not that long."
Perspective.
Going to find something to eat because that's what Suz told me to do, and I always do what I'm told...
0950: Suz is in recovery now. Dr came out and told me there were no surprises, everything looks good and he thinks she'll be very happy. He also told me to make sure she's comfortable and takes her pain pills - "Don't let her suffer" he said. I'm not the one he needs to say that to. I should be able to go and see her in 45min or so. :-)
1035: Sitting in the recovery room with Suz. She is surprisingly wide awake and feels fine right now. Munching on some 2-pack saltine crackers and one of those tiny cans of Shasta Cola. She keeps looking down her gown - I wonder if she thinks it will change each time? She is very excited and anxious to see the results, but alas, it's all bandages so I will have to try and distract her until they can be removed. Suz did say that they seem to not stick out to the sides as much so she is so far happy.
"I'm glad it's over" she said. One highlight of this visit is that the nurse was able to find a vein right away and there was no agonizing needle searching this morning. Next step will be to take her home, so I will give you an update this evening sometime.
Thanks for all of your thoughts and prayers for Suz. Feels good to be this far.
(Sorry for the delay - nurse came in to give instructions just before I was about to send this update)
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11-2-09 Well it has been a while, but I wanted to let you know that I will be updating tomorrow as Suz goes through the final reconstruction surgery, so check this page for her status. We are supposed to be there at 7:30am.
Susan is understandably nervous, but looking forward to having this final step done.
Thanks for your support and prayers - let's all cross our fingers. _________________________
9-30-09 As you know, I don't have the vocabulary budget for all of the ten-dollar words that were on the PET scan report, so I will summarize:
NO EVIDENCE OF CANCER!
I added the exclamation point, but you get the idea. Next up is the port removal, which will be October 7, followed on November 3 by the final reconstruction surgery. It's hard to jump up and down right now - there's this odd mixture of happiness, joy, humility and caution that she and I are both trying to make sense of. Maybe we never will. There is still this looming heaviness that it could metastasize somewhere else and it is hard to shake that feeling. I read the report, and there it was, in black and white, but still the thought is troubling.
Suz knows that it is gone, and the odds are certainly in her favor, but as a model Lutheran, she refrains from any sort of celebration, opting to continue on with work and try to make us believe that all is "fine". She was going through some of her scrapbook stuff last night and found a picture of the two of us at Disney. She thoughtfully stared at if for a while, started to cry and proclaimed "I want my hair back".
So keep her in your thoughts, give her a hug if you see her (unless you have H1n1) and let her know that you still think about her even though the "hard" stuff is behind her - because it's still nipping at her heels. _________________________ 9-17-09 When this all started, I remember Suz and I talking about those “Survivors” that are always on TV, in books, magazines, etc. She said to me “I don’t want to carry that label around for the rest of my life – I don’t want it to define who I am”. I agreed, and we followed the detour signs that had been thrust in our path. Something happened along the route, I’m not sure when or even that there was an exact ‘when’, and we find ourselves more able to identify with what those women feel now that they have beaten their cancer. Last week, Suz endured the final round of chemo and we walked out of the cancer center with a strange sense of triumph, completion, strength, gratitude… Can’t find the word. I had my hands full at the time, but I looked at her with a kind of pride that is hard to explain and she was crying. And laughing. And embarrassed. Confused about how to feel at a time like that. I remember wanting nothing more than to drop everything I was carrying, pick her up and swing her around like it was our wedding day. Funny how we get self-conscious and hold back sometimes. Wish I would have dropped everything. Susan had the usual post-poison symptoms last week, and I noticed she found them a bit easier to deal with knowing it was the LAST time. Her fingernails are all but falling off and she was in a fair amount of pain for a few days but she kept working, kept smiling, kept her head up. Things are better now and her fingernails are visibly starting to grow again. She has a fuzzy, infant-like growth of fine hair appearing, although we are told this is not the hair that will stay. All of those cells are still confused and will be for some time. A PET scan has been scheduled for next Thursday and if all is well with those results the port will be removed about a week after that. A final reconstructive surgery will take place the beginning of November. We had the chance to goof off a bit at the Legion last Saturday and I have been thinking about this one thing quite a bit: There was Karaoke and at one point before I sang a song I had everyone in the place be quiet for a moment and I pointed out Suz and said, “This is my wife Susan, she had her last chemo treatment this week – she has survived breast cancer!” There was a round of applause and cheering unlike any I have heard there before. I feel strange about announcing it, hard to explain why but that statement carried humility, anxiety, pride and strength all at the same time. It was nice to slow dance together and just - be. So many things to still worry about and so many things still to do, but every once in a while these moments that remind us what’s important come a long and we hold on to them. And each other._________________________
8-10-09 The alarm clock woke her at 6:00am. And 6:08. And 6:16, 6:24 and finally at 6:32. This was all part of the usual routine, so the day started not unlike any other. She showered, dressed, applied make-up and reminisced about doing her hair. Soon, she thought… soon. She headed downstairs for the morning can of Coke, sat down at the table and commanded her laptop to respond. Two appointments today, so working from home until the minute it was time to leave was a good way to relieve some of the guilt she carries for missing so much work lately. Hasn’t been much really, but she has always had a good work ethic: carved out by her Mom and Dad when she was still a toddler. The phone in the downstairs office rang and he awoke, trying hard to listen to the voice message that was being recorded by a potential customer. He lifted his heavy head, turned and gave up with a soft thud back on the pillow. “Got to start going to bed earlier” he scolded himself. She hurried into the bedroom, notifying him that someone had just left a message for a job on Wednesday morning and asking if he wanted to get up yet. “Yes… What was on Wednesday again?” he asked while trying to clear the fog in his head. “That’s Summer Trek day” she answered. Ah yes, it was clearing now – the day he is taking the youth group around to mow lawns. Funny, he thought, that she remembered something he didn’t. “Seems like old times” he chuckled while reaching to pet the dog. Lately, he was learning more and more what it must have been like for her to put up with his lack of memory. Chemo brain they call it. What’s his excuse? He looked at the clock – 8:47 it said. “What time is your first appointment?” he asked. “Eleven” she said. So, he followed his morning routine as well. She was sitting at the kitchen table, typing faster than should be allowed, looking as cute as ever with her hair-free head uncovered. The sun was shining through the partially opened vertical blinds that accompanied the patio door. The TV was on and their daughter was staring at her mom with curious eyes. “Did you eat breakfast yet?” he asked the 7-year old. “Not yet!” came an all-too-cheery reply. “Are the boys up yet?” “Nope.” this time the reply was in stereo. “Boys it’s time to get up!” He shouted, probably a little too loud. Some time later, they got ready to go to the plastic surgeon’s office for an expander fill, followed by the standard chemo appointment with hopefully a lunch squeezed in the middle somewhere. She was ready to go, while he was doing the usual too many things at once routine. “Now my laptop wants to update, so I’m going to make sure the race gets recorded.” he fussed. “You’re fine” she said. Seems funny, but he still wondered what he did to deserve her. Patient, kind, beautiful. That’s what she has been to him since that July day some 18 years ago when she kissed him for the first time. Backing the van out of the garage, he remembered that he forgot his allergy pill, so another small delay. “And I need my sunglasses” he grumbled while heading back into the house. What’s his excuse again? She had looked a little angry or bothered all morning, and he was sure he wasn’t helping. “You OK?” he asked as they were crossing the Minnesota river on the northbound side of Cedar Ave. “I’m fine” she said. She always says that. Her feet could be blue and all of her teeth falling out and she’d say “fine”. “You just look a little angry”, he said, hoping to get the real deal out of her. “I’m a little anxious about the fill.” she said. There it was – anxiety. Anxiety born from previous painful fill sessions. What could he say? He assured her that all will be well in the end and that the end is now much closer than the beginning. He knew that wasn’t as helpful as it was intended to be, so he reached for her hand and they traveled on. Maybe it was all engineered to be a distraction, but while trying to get her there on time, he pulled out into the fast lane to go around some traffic and promptly noticed the business end of a radar gun in the capable hands of a police officer pointing right at them from the other side of the median. “Can’t be for us” he thought, “he’s on the other side of the highway”. He watched the officer hop in his car and speed off toward the exit ramp they had just passed under. “Oh, crap!” “What!?” she asked, not having seen the activity on the other side of the concrete wall separating the northbound lanes of Hwy100 from the southbound lanes. “I think we’re busted” he said, still not quite believing the officer was onto them. “How fast were you going?” she was more worried now. “Only about 10 over” he hoped. He made a last-second decision to take an alternate route and avoid the issue all together. So now instead of anxiety over pain, she had anxiety over being late and upsetting the doctor’s office. Naturally the alternate route had construction and traffic, so they wound up being about 12 minutes late to the first appointment. The busier than usual doctor’s office was unconcerned about their late arrival and the conversation was more about how she had been since the last visit. It had been a while, as she was in no rush to expand since nothing can be completed until all of the chemo is done. First side filled with no pain what so ever, and he could see the anxiety fall from her face like the dew falls from a flower, allowing it to stand and greet the day. Second side brought some pain with it, but that is the side which is not in the perfect spot, so it was almost expected. The doctor reported that everything still looked normal, no signs of anything going wrong, and reassured her that all will be well in the end. The Doctor seemed a little rushed, so they said their farewells and headed back to the parking lot. They made a mutual decision to stop and get a gigantic burrito at that place that’s known for that, yet is hard to pronounce for some reason. Lunch conversation was ordinary and neither of them seemed to mind. A few minutes of normal threatened to take over, but then it was time to go to the Fraufen-something cancer center for another dose of poison. Something must have gone awry in the healing garden, as some of the orange cones had returned, complimenting the new green tarps and scaffolding quite well. He figured it would ultimately be one of those projects that is never quite finished. “Got a few of those at home.” He mumbled to himself. They intended to go for a walk while her blood was tested, but then remembered that they get to talk to the doctor today, so they sat in the windowless room in the yellow neighborhood and waited. A brief visit with the Oncologist revealed a few ways to treat the increasing, sometimes excruciating pain in her legs that she has been experiencing. Neuropathy has been kept to a minimum, so the decreased dose formulated last week was again scheduled and sent to the chemical plant to be mixed. Numbers are good, in fact hemoglobin was up considerably, so once again the IV machine came to life, the TV buzzed, and he typed. Whirrrr, click…. Whirrrr click…. _________________________
8-03-09 It's been a busy couple of weeks for sure, so I will do my best to get you caught up. Suz is doing OK, she is more tired and has more pain now than previously. Both due to the chemo drug Taxol which has a cumulative effect as the weeks and doses progress. Today's dose was lowered in an effort to reduce the numbness and tingling in Susan's hands and feet (called Neuropathy) that has been increasing steadily. The dose reduction is also to try and avoid the condition becoming permanent.
We are in the green neighborhood today with a window overlooking the healing garden. The state-of-the-art cancer center functioned more like a corporate bureaucracy this morning with no one quite sure what to do about much of anything to start. Paperwork went missing, charts were fouled, lines of communication were down and medication was prepared improperly. Then a wave of common sense seemed to wash over and all is well. Still amazes me that a place can be this huge, shiny and high-tech and run worse than the old, dirty low-tech building that it replaced. I guess it really doesn't amaze me now that I type it out - seems typical.
Last weekend (a week ago) was Rosemount's annual Leprechaun Days festival and Suz and I went up to the Rosemount American Legion on Friday night to enjoy a steak dinner and listen to Bill Dewey and the Dynammics perform. The band dedicated a song to Suz and I, so we danced on the parking lot "dance floor" together. I heard later that there were a few tears in the crowd. On the dance floor too. Thanks Bill, Jared and Jay.
So things here are about as normal as they can be. We try to keep upbeat as Susan gets more tired and sore, remembering that things could be so much worse. This morning we walked around the healing garden and I took a few pictures for you as an apology for missing a week - does that work?
click on any of the pictures to see a larger version.
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7-20-09 They pulled up to the
substantial parking structure early that summer morning, looking for clearance
markings to confirm whether or not the truck would fit. Eight feet plus
two inches was hastily marked on a plastic tube overhead, allowing the patient
and her husband to enter without worry. The patient still worried a
little. _________________________
7-15-09 Monday Suz got to go to the new cancer center attached to Methodist Hospital. Very fancy place she said - I was home with the kids again because they slept in the backyard in the tent and Suz's appointment was at 7:20 am. I will post a full description next Monday while we are there. Susan did mention that the chair she was in is heated, so that was one highlight.
Did I just say highlight?
Her spirits are good lately, although I know she would like this to be over. We spent last Saturday over at her Redneck friends' house for NASCAR and adult beverages and we have been doing more hanging out with the neighbors lately. I think it helps her keep her mind off of things. The 2 mile walks continue, but I can see the fatigue is growing steadily. It's weird - Suz was awake until 3am after the Monday chemo because of all the steroids, then tonight she was in bed promptly at news time.
Thanks again to all of you who are still helping out with meals and such - I don't have the words, but just know that your efforts are not taken for granted and go a long way toward maintaining some level of normal around here.
There's that word again... _________________________
7-06-09 I was going to come up with a song matching the rhythm of the IV machine today, but since our oldest is at bible camp, I was told to stay home with the other two and Susan went to chemo by herself this morning. She said it went just fine and that she took a nap. Suz is doing real well with this round of drugs, not feeling many side effects yet, but we are cautioned that the effects are cumulative over the course of the 12 weeks of treatment.
I was glad to see Suz doing so well this weekend. We had been planning to take the kids to Valleyfair along with my brother and his family, and since Suz was up to it, we went last Friday. We were there for 12 hours - open to close - and all of the kids did great! We couldn't believe how Hannah and Sean (my brothers' youngest) did, riding every roller coaster and crazy ride in sight.
We had a party in the backyard on the fourth, causing a ruckus, but not too much trouble. Suz had to go to bed early that night as the cold air was making her bones ache. By early, I mean 11:30 so she still had fun and watched us act like a bunch of goofs.
Sunday we drove Jason out to the bible camp where we left him looking a little nervous, but excited at the same time. I wonder what he's doing right now...
We have started taking a 2-mile walk in the evenings in an attempt to heed the advice of the nurse and fend off the fatigue as the drugs accumulate, so hopefully that will turn into a habit - Rookie seems to enjoy that a lot too. I have been keeping the HCON up-to-date, it just hasn't changed all week, so I'll go ahead and call that a good thing.
We hope you are all well and were able to enjoy the weekend in a fun and safe way...!
Talk to you soon. _________________________
6-29-09 Here we are again, at the clinic listening to the IV machine. All is well (relatively speaking) with Suz. Her numbers looked good - actually got a little better since last week. She had just a moment of the achy feeling, but not much else. Her taste buds refused to function for about a day, but they have been working good the last several days now.
We were at a funeral on Friday and Suz had the chance to hold an 8-month old baby for a while. She had a moment of panic while remembering how our kids used to grab her hair and see if it would come off, knowing that this time it would. Thankfully, the child was more interested in the strings on her blouse and everything went well.
Saturday we traveled to Moose Lake to visit with Susan's sister and celebrate our Nephew's birthday. They live on a lake now, so it was good for Suz to hang out and relax a little. She has this purple camo bucket hat that covers her ears nicely and looks really good on her. Hey maybe she'll actually wear a hat once in a while when this is all done. Sweet.
I don't know if it was the funeral or what, but I was watching Suz and her Mom, Dad, Sisters and Brothers-in-law play Farkel yesterday and I had a wave of sadness come over me, wondering what the weekend would have been like had things gone the other way for Suz. Now, I'm not trying to make you sad, I just wanted to share that I still think about that sometimes just in case some of you think you're alone in that respect.
I think we all get complacent and turn a blind eye whenever we can to avoid painful thoughts and feelings. The fact that Susan is so strong and is dealing with this so well makes it easier for us to do that. We all put on a face - human nature I believe, but just know that there is still pain, sadness and worry every day here and you are not alone. You should also know that there is an equal if not greater amount of happiness, humility, and joy here as well - hopefully we are not alone and you experience the same in that regard.
Just sitting in the waiting room here is a portrait of the human condition. So many lives affected by the same thing, taking things from every single one. But also giving to those lives in ways that are still yet to be fully understood.
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6-22-09 *WARNING* If you are a vampire, do not read this in the day time. If you are a paranoid delusional, please affix your foil-wrap head gear before continuing. If humor makes you laugh and you have a condition which only hurts when you laugh, discontinue reading. If real stories about real people affect you in a way that causes discomfort, discontinue reading.
That's how the first part of our morning has left us feeling. We are at the clinic, Suz is sleeping, hooked up to the all-too-familiar IV machine receiving her first dose of the once-a-week for 12 weeks medicine. The nurse had much to say (because we asked) about possible side-effects and it started to feel like we shouldn't have asked. They have to tell you what COULD happen so you can't say they didn't if and when it does.
Basically, this medication will leave her feeling less nausea, but more achy-feeling. It will cause neuropathy (tingling in the fingers and toes) that they monitor closely in an effort to keep the sensation temporary. It may or may not make her eye brows and lashes take a vacation. The effects are cumulative, so she will get worse as the summer and the treatments come to an end, after which some things will recover quickly (pain and the tingling) and some will take longer (hair and energy).
It is all at once good to be at this stage and depressing to realize how Suz will probably be feeling as the treatments progress. She is still positive, focusing on the fact that there are now 11 of these left after today. She likes a plan, you know.
This past weekend was really nice for Suz, so I am glad we had nice weather and she was able to "live it up" a little before this round. We were camping in Fergus Falls for my Brother's wife's birthday and had a pretty good time after our very eventful ride up. On the way there last Thursday, we were in Maple Grove on I-94, driving in traffic, when a car crossed all three lanes, sideways, twice, while doing a complete 360. About 100 yards in front of us. The road was dry, so we figured he must have looked up, saw brake lights and panicked. The amazing thing was that not a single car hit him, nor did he hit anything, so after the guy collected himself he just continued on, most likely stopping at the next exit for a new pair of britches.
We stopped in Alexandria for fuel and dinner around 5:00. Looking at the radar we could see a HUGE storm coming in from the west, but decided to continue on anyway. long story short, after seeing the entire side of the camper in the mirror (wind was blowing us all over the highway), we took shelter at the Evansville exit along with about a dozen trucks and upwards of 20 cars. After 20 min of crying children, we continued on to find a tractor-trailer in the median that had been blown over. We made it to the campground without further incident and had a nice, fun, relaxing weekend.
*WARNING* if thinking of women with no hair causes an undesirable Sinead O'Conner song to become lodged in your brain, discontinue reading.
Suz has become more comfortable with her cute round head and even bared it this weekend for a little bit, adopting my mantra "if you don't like it, don't look at me!".
I'm so proud.
Here's a couple pics of the storm and the truck that had blown over. I spoke to the driver the next day and he was OK, just a little shook up.
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6-14-09 After a week of pain last week, Suz is much better today. She is looking forward to going to her cousins' sons' graduation party and chilling out for a while. I am trying to remind her that the worst is behind her now and I think that helps most of the time. She is definitely tired of being tired. And sore. And in her mind - "funny" looking. I told her it will take me a while to get used to her having hair again when it grows back.
She is certainly a beautiful woman.
I have decided to start using an "HCON" indicator that I will update daily. There usually isn't a whole lot of change in the way Suz feels, so I feel silly writing the same thing over and over. I also didn't realize until lately how many of you still check here daily and I don't want to let you down, so even if I don't add any news, I will make sure the HCON is current, letting you know how Suz is feeling each day.
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6-05-09 Susan is feeling better the last couple of days. Still tired, but not as sick. Last evening she went shopping with her Mom and Sister, and I could tell that was a nice change of scenery for her. The kids and I watched a movie and things seemed normal for a moment.
Hannah had her Echocardiogram yesterday afternoon and the Dr said everything looked great and that the chances of anything being wrong at this stage are nil. We have to bring her in for another in 6 months, but they said that is just protocol for that disease.
Suz does seem to have this sadness about her lately, but I try and remind her of the temporary nature of things and that it will all be behind her before we know it. Like so many things in life lately, it is far easier to say than to believe.
We thank you for your continued thoughts, prayers and support - don't think for a second that it goes un-noticed or that it is taken for granted. _________________________
6-02-09 Susan is still not doing real great. Yesterday was supposed to be her last dose of the harsh chemo, but her white cell count was elevated, causing the doctor to err on the side of caution and prescribe some antibiotics. The chemo has been postponed for a week while we see if she can fight off whatever infection has latched onto her. She is also more anemic now (which was expected) and that is causing her to be very tired most of the time.
It was a pretty big let down for her today. We were talking on the way there about how nice it was to reach that milestone today. I guess we spoke too soon. The Dr recommends lots of rest, so I hope Suz heard her and follows instructions. I do what I can to make sure she gets rest, but there is a fine line with her, as you know.
She really likes her work and wants to make a difference there every day. Sometimes that is a good thing, keeping her mind off of things. Sometimes that is a bad thing - keeping her mind off of things. _________________________
5-27-09 OK, so my "keeping up to date" skills have fallen off dramatically - sorry about that. It's been a busy couple of weeks for sure.
Susan is the worst she's been since this all started as the effects of continued chemo treatments take their toll. She has been dealing with the sour stomach for about a week and a half and stated that everything tastes like sloppy joes now. There have been a lot of achy bones and painful muscles too. Of course, she is far too stubborn to stay home and continues to go to work every day. Keeps her mind off of things I suppose.
We did get to go to Moose Lake and camp out in her sisters' driveway, so that was fun. Kinda felt like camping. This past weekend we stayed home and had what was supposed to be an outdoor racing party, but the race was rained out so we watched baseball on the 10 foot screen in the backyard with some friends. A friend of mine brought his Wii over and we bowled until 2am. That didn't help Suz much, but she had fun and we both laid around most of Monday.
Hannah seems to have no lasting effects from her ordeal, although we have one more test for her next week. The kids still keep things from getting too dreary around here with their constant acting-their-age antics. I taught Jason to mow the lawn and Josh has graduated to dish duty. Hannah is still working on making it through a day without too much drama. Girls. Uff Da.
I think I am going to get the water tested in the next couple of days and see if we can add some residents to the aquarium. The 5 still remain and seem to be happy so I think the water is under control.
Tomorrow Suz goes in for another fill and hopefully an answer to the pain that has reappeared in that area, then next week is the last round of this chemo regimen. She starts the every week for 12 weeks regimen on the 15th, but it is supposed to be not as bad to deal with.
We still very deeply appreciate all of the help and support and prayers that you give, and we still have tears and still have laughter.
And we still have waves. _________________________
5-12-09 If I say I now know what it's like to reach the limit, the edge of the Abyss - does it mean anything? Are Suz and I qualified to say we know where the low is? When do you get to make that determination - wear the "badge of honor"...
So many people are in a deeper, darker place than we are, yet we sometimes feel like screaming and saying "OK - we get it!"
But do we? Does anyone?
Susan had her head shaved last Thursday. Her hair had started to come off in greater quantity than usual and she had this nightmare about it coming off in huge clumps while at work, so she decided to take the advice of so many and take control of that situation. Turns out she has a cute, perfect head! One nice thing was that on Friday when she went to work with the wig for the first time, one of the cafeteria workers (whom had no idea about Susan's cancer) issued an unsolicited compliment about Susan's hair - said it looked really nice cut that way. That was a huge boost to her self-image for sure. You know how it is when you don't feel like you look good - your family and friends can tell you a million times, but it's that one random stranger that makes it stick.
Hannah is slowly getting back to normal after her ordeal. The latest blood tests show improvement, but not superb numbers. Thursday we go to the Dr again - both Suz and Hannah have appointments.
Physically Suz did well after this round of chemo. She was less tired, but a little more sick to her stomach than last time. Emotionally, it seems like a very long road lately. We know it will all be done in what will seem like a very short time. It's like being on a long desert road. The sign says "Gas 5 miles" but boy is that a long 5 miles when the needle is pointing at "E". _________________________
5-05-09 This morning began with good news. Hannah's heart looked perfectly fine, in fact the technician said she was kind of boring - that's a good thing. There are a bunch of follow-up tests for Hannah now, so there is some anxiety yet although the doctors are still convinced that she will be fine. Hannah was full of chatter all night of course, telling stories to every nurse who would listen. Suz slept OK and we left the hospital around 11am giving us enough time to get home and Suz even got to shower before the next adventure.
Susan and I are sitting in the clinic right now waiting to get the first chemo drug pushed in. The doctor gave her a prescription last time for some numbing cream, so we put that on the port area and (HOORAY!) Suz didn't feel the needle at all! We were able to get all of the appointments scheduled for the rest of the chemo today and Suz is feeling better about that. She decided to have the once a week for 12 weeks option, so the last chemo is currently scheduled for August 31.
Once again everyone is in a calm spot, keeping an eye out for the next wave. _________________________
5-04-09 I'm not sure how to classify today's events - rogue wave doesn't seem to cover it. Our youngest, Hannah, is in Minneapolis Children's Hospital tonight with Suz sleeping at her side. Hannah has had a fever for almost a week now, and after the first couple of days we brought her to the clinic. They did the standard Strep tests which were negative, then as the weekend progressed her fever persisted (topping 104 a few times) prompting our Pediatrician to order a barrage of blood work. We were sent to a specialist downtown who reasoned that she could have Kawasaki Disease. This is a bacterial infection found mostly in children that attacks vessels and arteries, including those around the heart.
Hannah didn't show all of the symptoms, but enough to prompt the Dr to send us to Children's without further delay. The disease, if left untreated, has been known to cause coronary aneurisms in about 20% of those who are infected. She is receiving a blood product that is manufactured to boost the immune system and kick the bug out of her blood. This needs to be administered intravenously and slowly, requiring the hospital stay. Tomorrow she will have an echocardiogram to determine whether there has been any damage to the arteries around her heart.
None of the doctors are overly alarmed at this point - it's more of a proactive step as opposed to reactive. There are more details about the disease that you can Google if you want.
Hannah is being a very brave little girl and she didn't even cry when they put the IV in. She darn near broke my thumb, but didn't shed a tear, so Suz is happy she didn't inherit the whole needle aversion thing. It would appear that Hannah did inherit her mother's will and determination. I am truly blessed to have two such strong spirits in my life.
As I left them, Hannah was snuggling with her stuffed poodle and Gram blanky, Susan was getting ready for a nap, and the nurses were trying to coordinate the tests and drug IV so that Hannah can be released in time for Susan to go to her chemo appointment tomorrow.
It is indeed a vast ocean. _________________________
5-03-09 Anticipation, worry, fear - call it what you want, but I think the nice weather has worked in reverse a little for Susan this year. Suz has had a cold for about a week now and is plenty tired of being sick. So now we wonder if they will do the next round of chemo or if things will be delayed. It all depends on how her blood is right before the drugs are administered, which will be Tuesday.
She wants to be out working in the yard, messing with plants and such. The kids helped yesterday with cleaning out around the lilac bushes so she feels better with that done. We touched up some landscaping in the front yard and fixed some landscape lights. I can tell she really wants to be outside and that she will have trouble adjusting to this new state of being for the summer. I do what I can to assure her of the temporary nature of things.
The impending hair loss is an issue too, but I think once it is gone that she will deal with it just fine - it's that old (way too familiar) fear of the unknown. We will be setting up a hair-shaving appointment later this week to minimize the shock factor. I'm sure that will be a shock in itself but hopefully less of one than having a handful in the shower.
We are doing what we can to find fun though - Friday night we went to Farmington with some friends to visit one of Susan's friends. Every year, they do a city-wide clean up day where you can put all of your junk by the curb and the city collects and disposes of it. Suz's friend said they have a fire in the front yard, enjoy some beers and watch everyone dig through all the junk. We decided to be funny and hook up the 20' flatbed and head down there with all of the emergency lights flashing. Her friend mentioned that she wished they had a TV in their garage, so Suz and I and our two friends drove around the neighborhood collecting as many TVs as we could find.
We ended up building a 16-TV wall in their front yard. Four of them actually worked, so we stood there for a while like a bunch of dorks watching a few old TVs and a mess of crazy people digging through junk piles...
You might be a Redneck.
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This is the current page - click HERE to see entries from 4-30-09 back to 2-27-09
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