Second shoe drops ...the right way!!!

We just got back from a fast, fun-filled, fruitful, fireworks-friendly family vacation in Southern California.  That may explain all the calls and e-mails not answered.  We did have computer access but little time or energy to do the right thing.  We'll try to catch up before the next wild trip the end of this month.

As you can probably deduce from that last paragraph, Carolyn is feeling well and doing more than she probably should as she recovers from her surgery.  The wound is healing as good as can be expected and all the indicators are pointing the right direction.  Two weeks ago I said we were waiting for the other shoe to fall so that we'd have a better idea of what the next step will be.  Well, we got word just as we were leaving last week so the word didn't get out.  But... the good news is that it's GOOD NEWS!!

Based on the OncotypeDX testing, the recurrence risk of the cancer is low.  In addition, there is no evidence that chemotherapy will improve the prognosis.

That means Good News and Good News.  Low risk and no chemo!

Carolyn will need to proceed with hormonal medication which has some side effects similar to menopause.

Thanks again to all of you who kept us in your thoughts and prayers.  We love you.

Carolyn's hanging in there

Seeing Carolyn start to get restless and knowing that soon she'll be itching to work the garden, I was happy to see her doctor release her from confinement and bedrest.  It seemed to me that Carolyn actually did much better at work.  She's been back a week now and looks healthier.  However, she says that she's much more tired than she used to be at the end of the day.  I think she should just plan to come home when she starts feeling beat.

No word from the laboratory regarding her need for or the effectiveness of chemotherapy.

Waiting for the second shoe....

We just got back from the oncologist's office.  Our hope was to know everything about what is going to happen but we really didn't think we'd be that lucky.  We do know a little more, however.

First the doctor told us about hormone therapy which is quite popular with fighting breast cancer.  Having studied up on all this, Carolyn asked Dr.Duong if all the side effects he was describing weren't very similar to the symptoms of Menopause.  He agreed. Then Carolyn asked if the medication didn't actually increase the occurrence of certain types of cancer.  In other words, this could be a classical win-lose situation   She could win the battle against one cancer only to fall victim yet again to another.  No, Dr. Duong, countered, a new drug on the market has the same efficiency in killing cancer cells without causing additional cancer.  The side effects really are just like going through menopause.  That was good news.

Carolyn steeled herself for the second shoe to drop as Dr. Duong said, "Now about chemo. . ."  Carolyn let her breath out slowly.  "We're not at all sure it would be worth it," Dr. Duong  continued.  Apparently there is a test they can run on the cancerous tissue which will give a better idea about just how effective chemo will be.  They hadn't run that test yet, since they wanted to know first if Carolyn needed those test results to make up her mind about accepting chemotherapy.  The decision really is in her hands but she can ask for a test to help her make that decision.  She  opted to wait for the test results which we can expect in about 2 weeks.

We wait some more.

She's a believer

Carolyn says that if she wasn't a believer before, she is one now - a believer, that is, in having annual mammograms if you are in a moderate to high risk group.  Catching cancer early can make all the difference in the world.

The surgeon just called with the pathology report on the tissue taken during Carolyn's surgery last week.  As you will recall, the surgeon not only removed both breasts in a bilateral mastectomy, she also removed a tumor that had been identified as cancerous.  The tumor was 1.7 cm in length with "activity beginning in the surrounding tissues."  As previously noted the tumor had characteristics of lobular (branches that lead to the milk ducts) and ductal carcinoma.  The surgeon removed 8 lymph nodes - none of which showed evidence of cancer.

Official diagnosis: Breast Cancer, stage 1-B

What is next? Carolyn will meet with the medical oncologist to discuss whether hormone therapy (the tumor  is estrogen sensitive), chemo therapy or something else is most appropriate.

Oh, the unknown.

All is well, all is well

Of all the operations that Carolyn has endured in the past 10 years, I think she's bounced back from this one the quickest.  She has several restrictions from her doctor about things that she shouldn't do and she's staying pretty much within guidelines.  She isn't outside washing the windows or trying to do heavy housework.  I couldn't stop her from making our bed this morning.  She moves much faster than me.

To all those who have asked or are going to ask:  Yes, Carolyn is accepting visitors, phone calls, and email.  She has enjoyed your comments and well-wishes but she'll need visits and phone calls to keep her sitting down.

Thanks for all your thoughts and prayers.

It's good to be back home

We just got back home from the hospital.  Carolyn was discharged this morning with the usual warnings to not do much of anything until her wounds heal.  Her first words on looking over our rain-soaked back yard were, "Looks like the sweet peas sure need  picking."  Wanna bet how long it takes for her to convince herself that she needs to take care of the blooming flowers?

I asked Carolyn if she'd like to post an entry this morning. Here she is:

Well, I thought I was quite coherent until I listened to a message I left on the telephone and ......
 I'm pleased to report that I am home and feel fine. It is amazing what a good pain pill can do for you ;o). Actually, I haven't really needed the pain meds for more than a headache.
 Depending on who I listen to I am to lounge around and do nothing  much for two to six weeks. I'm planning on two weeks. It  sounds like it is time to read the books and watch all those movies I've been saving up.
 Thank you each for your good wishes, prayers and kind thoughts. They are very helpful.
 Now I just have to learn how to handle the after surgery drains.
 It is good to be alive.
 Carolyn

 I think she summed it all up very well.

On the Road (to recovery) Again

The News

It was a much happier, brighter, and more alert Carolyn who answered my phone call this morning than the one I visited with last night.  She admitted that she couldn't recall a bit of conversation with Ed, Tiffany, or me last night, just a vague recollection of someone being in her room.  I was calling this morning to ask what, if anything, she wanted me to bring to her. I was also interested in what her day was shaping up to be.

By the time I arrived shortly after10 she had begun taking walks the length of the nursing station.   But she also welcomed the reading book I brought.  She informed me that "we" would be instructed at 1:00 this afternoon on the care and cleaning of her drainage tubes coming from her chest cavity.  The doctor had said that after the instruction, Carolyn could go home at any time.

However, as the day wore on and Carolyn continued to feel a little queasy, she decided she would rather stay an extra day; that a couple of extra meals in her stomach might help.  So the plan now is for her to be all packed and ready to go about 9:00 tomorrow morning.


News behind the news

The discharge timing question boiled down to "where would be easiest to get good rest" and which would be the best place for care and comfort if Carolyn were to become more nauseous.   I didn't think there would be any question given the usual hospital environment.  Carolyn's roommate, a woman in her 80's who had fallen and broken her ankle, was quiet enough but when her children and grandchildren came it became a noisy room indeed. One of the hospital staff finally reminded the family that visitors must be 12 and older and that only 2 at a time could visit in the patient's room.  Whereupon the patient's daughter roughly pulled the 2 year-old girl out of the room while saying loudly, "THEY don't want you to visit Grandma!"  Good theater but hardly a peaceful environment.

Finally, in a perverse twist of incentives, by staying an extra night Carolyn becomes an inpatient, loses her outpatient status, and qualifies for a $15 refund of her co-payment.  What a world!  She gets paid for extending her stay!

Under the knife and out again

News bulletin:
Carolyn had a bilateral simple mastectomy this afternoon.  The doctor also removed 5 lymph node specimens closest to the identified tumor in her right breast.  Two tissue samples were frozen and sent to the lab.  The results were negative for cancer.  The doctor wants to see the complete pathology lab report for all submitted tissue before giving a conclusive prognosis but she seemed positive about this afternoon's surgery.

Carolyn is resting as comfortably as can be expected given the assault to her body.  She is sore and slightly nauseous but dozing off from time to time as the anesthesia slowly works out of her system.  She looked a bit like Smurf Grandma when she came out of surgery due to the blue dye used to identify the optimal surgery target but already by 9:00 this evening, her normal color was returning.

The doctor was optimistic about discharging Carolyn Friday afternoon if she continues to improve at her current pace and if the doctor is convinced she can get adequate care for her wounds and fluid drainage.

News behind the news:
Since Carolyn has now had 4 major surgeries in the past 10 years, all at Kaiser, we feel we're becoming somewhat expert at evaluating their systems.  This time it appeared to me that they were continuing to find ways to improve and continuing to fail. For example, there were 4 separate times Carolyn was interviewed as part of the "admitting" process, 5 if you count the pre-op surgical consultation.  There was an interview in the Peri-Operating Medical clinic by a hospital based internist, a billing and fiscal responsibility interview by an admitting clerk, a workup by an RN in the Pre-Op staging area, and a mini-workup by an RN on the nursing floor where Carolyn was placed to begin her healing process.  Each person collected some unique information but they also collected duplicate and redundant information making us wonder if any of the information is really coordinated between departments.

Another example.  As Carolyn left the Pre-Op staging area to be wheeled into the Operating Room, we were given a card indicating what we could expect to see in the OR waiting room.  Similar to the flight monitors in airports, a patient monitor in the waiting room indicates by a code each person scheduled for surgery today.  A color code and legend then indicates where the patient is in the system: pre-op, surgery, recovery, discharged, etc.  Only problem is that Carolyn's coded listing still showed her in the pre-op area 2 hours after we had seen her enter surgery.  And there was no indication why.  We didn't know whether is was a delay with Carolyn or some other patient, or even the whole OR system.  And no one offered to tell us how long the delay might be.   In this case trying harder just didn't help.

Surgery scheduled

As we had expected, Carolyn's breast cancer surgery has been scheduled for this week, specifically Thursday, June 2.  She has already completed her lab work and will go in Tuesday morning to complete all the paperwork.   Thursday morning she has an appointment in Nuclear Medicine to have dye injected in her lymph nodes to determine the extent of their involvement with the cancer and thus how extensive the surgery will be.  She will also get the final word as to when the actual surgery will take place.  She is expecting to have a bilateral mastectomy.  The surgeon expects no complications and also expects that Carolyn will be able to go home on Friday following an over night stay to make sure that the healing process has begun normally.

We appreciate your expressions of love and concern as well as the many prayers that have been offered in Carolyn's behalf. We'll keep  you posted here on her progress.

Good news, bad news, no news

It seems to me that dealing with a diagnosis like cancer is a lot like peeling a banana:  you never know what you'll find just by peeling the skin back a little further. The fruit might be solid and white or mushy and brown or anywhere in between.

Good news is that there is no evidence of cancer in the left breast.  Bad news is that the tumor in the right breast does not seem as well defined as at first thought.  There is still no news about any spreading to the lymph nodes or anywhere else in the body.  Apparently we'll have to wait until surgery for more word about that.

Surgery has not been scheduled yet but will definitely be after Memorial Day and the Sacramento Jazz Jubilee for which we already had a commitment to volunteer about 16 hours as well as chaperon a couple of our grandsons around to some exciting concerts.  We're guessing the surgery will be the first week of June.  Although Carolyn has chosen to have a bilateral mastectomy, the doctor thinks it will only involve an overnight stay in the hospital.  She hasn't said how quickly Carolyn can expect to resume her normal activities.

We did have a consultation appointment with the plastic surgeon.  Because of all the radiation therapy that Carolyn has had in her breast and stomach area, he was not enthusiastic about using her skin or fatty tissue in those areas for reconstruction surgery (boob job).  That, plus the potential problems such as leakage or asymmetry, led him to recommend prosthetics instead.  Carolyn took the news rather well.

We went over to our home teacher's home yesterday.  They are going on an Alaskan cruise and Carolyn has volunteered to look after their garden.  Don and I gave Carolyn a blessing she had requested.

That's probably all the news we'll get until we hear when the surgery is scheduled.  Thanks for all the kind wishes and prayers and thoughts.  We really feel your love and friendship.

More information will be forthcoming, we hope

Carolyn and I met with her surgeon today to discuss the most likely direction the treatment of her breast cancer will take.  We've learned that some surgeons talk like that because you can't really know what's inside the body until you open it up and sometimes a surgeon will make a quick decision based on what he or she finds in the operating room or what the path lab report says.  Carolyn had an MRI last Friday but the results had not been interpreted and reported to her surgeon by this morning's appointment.

Carolyn has two types of cancer cells in a small tumor in her right breast.  Because one of those types tends to spread in the body and because Carolyn has already had a significant exposure to radiation in that area, the surgeon is recommending a mastectomy probably followed by chemotherapy.  She (the surgeon) wanted to leave the chemotherapy recommendation to the medical oncologist.

The surgeon said the mastectomy usually calls for an overnight stay in the hospital and for a fairly quick recovery time.  Even so, Carolyn has suggested that the operation be scheduled for early June to allow her to get through the Jazz Jubilee as planned.  The surgeon is okay with that.

We'll keep you posted as we get more information.

The next chapter in the history of Carolyn's Health

I suppose it really is time to officially open this next chapter because there is no longer any doubt that Carolyn is back in the ring against the formidable opponent Cancer.  Here is the announcement that Carolyn sent out to our children and I forwarded to our Facebook friends. I apologize for the duplication:

I decided that during my birthday month each year I would have a yearly physical, a mammogram, pap smear, blood tests et.al. In the process of doing this year's series a lump was found in my right breast. While the lump is on the small side (1.5 cm) the biopsy came back today as cancerous. It appears to be a combination Ductal and Lobular Carcinoma. At this time we do not know if it is non-invasive or if it has spread. I specifically asked to have it checked and verify that it is not lymphoma (and there is no indication that it is).

The next steps are an MRI of my breasts - they will inject a dye into my veins and then do a scan. After the MRI results are back I will have surgery. The results of the MRI will influence whether or not it is a lumpectomy or a mastectomy. I anticipate another round of chemotherapy. I told the doctor I wanted a boob job out of this game -- just as well be some benefit.

While another kind of cancer doesn't seem fair, I have been expecting something. I was raised in Northern Arizona during the time of the above ground Atomic Testing in Nevada. People in all the counties in Nevada, and in the southern counties of Utah and the northern counties of Arizona are all in an at-risk cohort. A statistically large number of people who were young during the 50s and 60s when they were doing the testing have had unexpected cancers. Two of my first cousins died in their early 30s from weird cancers - I feel like I have been very fortunate to have had a full and interesting life. However, this one isn't my swan song. I will survive this one to have another one in about three years.

If I can influence the scheduling of testing and surgery I will try to have the MRI this Friday, the surgery the next Friday and be ready to enjoy the Jazz Jubilee with Ben and Perry two weeks after that. When they go home, I will try and schedule the chemo and be ready for the Family Reunion in Utah the first part of August. Dad says that sounds like pure Carolyn. Since none of this has been discussed with medical personnel, we will see if they go along with my plan. 

I would appreciate your faith and prayers.

Carolyn

We were aware of a potential problem when we traveled to Utah for a family  funeral but since we didn't know at the time if the lump was even cancerous, we decided not to speak about it.  Besides there was enough tragedy in the family with Brian's passing.

Carolyn is beginning to be superstitioius about something happening every three years.  First there was her myasthenia and removal of a baseball-sized tumor  in her chest.  Then it was the removal of her thyroid.  Three years ago they discovered lymphoma in her stomach which resulted in major stomach surgery followed by months of chemo-  and radiation therapy.  She's an amazing lady to take it all so bravely.

She has several things going for her this time:  (1) She knows the drill better this time;  (2) the tumor is much smaller this time; (3) Northern California Kaiser has been named the best agency in this area for integrated  medical records; and (4) she appears to have a well-qualified team of doctors and medical personnel who have worked together on hundreds of similar cases.

We both appreciate the outpouring of love, concern, and kindness we have felt this past week.  It really is wonderful to have so many friends to stand by us when we're once again called to stand up to that monster Cancer.

The End. And a new beginning

Hooray!! Hooray!! Hooray!!

This afternoon Carolyn received her final radiation therapy treatment for her most recent bout with cancer. She is scheduled for a wrap-up appointment with her oncologist next week and her surgeon the week after. That should be the end of this episode except for the periodic checkups. She will have those every 3 months for the first year, every 4 months for the second year, every 6 months for the third year, and once a year for the next two years. If nothing has recurred at that point, the medical establishment will deem her fully cured.

Thanks again to all of you who sent your prayers, thoughts, and best wishes. You are our true friends.

Back to work

Yesterday, Carolyn returned to work. And it seemed to agree with her. She wasn't exactly interested in cooking dinner when she got back home but then I wasn't either. So we settled for a night out ... at Taco Bell. Do we celebrate or what?

Seriously, I think she really was getting bored. Last week was especially bad as I was away for 9 hours solid each day. Now she can work with people all day and have lots of things to discuss with me when she gets back home.

For the next three weeks she will be taking off work around 2:30 to give her time to get to the radiation center for her radiation treatments. So far those haven't been a problem for her.

The beginning of the end

This week Carolyn began her next (and hopefully last) phase of cancer treatments. She is supposed to have daily radiation therapy for the next three weeks. The first two sessions have been a snap. She's been in and out within 10 minutes. She is schedule for the treatments at 3:35 each day so she'll probably just call it a day when she leaves work and heads up to Roseville for her treatment.

After this series of treatments she'll go in for a thorough physical 4 times a year for the first year; then 3 times a year for a year; then 2 times; then once. At that point they'll consider her cured. I real ly think she's cured right now but it's better to be safe than sorry.

We'll keep you posted on her reaction to the radiation.

Haven't we been here enough?

The "here" I'm talking about is the Kaiser Hospital/Medical Center on Morse Avenue which, thankfully, is convenient to our house. It is about 10 to 15 minutes drive time away. Many of our doctors also have their offices there so we've gotten to know the place rather well.

Well enough that we didn't need to make another trip down there after 9:00 last night except that Carolyn was suffering excruciating pain in her lower right back and bladder areas. She's a pretty tough gal so when she starts moaning in pain, you know she's hurting.

For the first 1.5 to 2 hours the care was miserable. They actually took Carolyn in within 10 minutes (which probably felt like hours to her) to give her a quick check-up and triage (patient evaluation & assigning priority). But then we sat in the lobby for another hour waiting for further action. When it came, it was like night and day. The medical assistant called Carolyn's name and motioned for me to come along as well. They never want additional family for the triage stage. We were led past the nursing station and into an exam/treatment room. A nurse called out, "I'll take her!"

A doctor arrived who looked younger than all of my kids but she seemed competent and confident. She explained that the symptoms sounded like kidney stones but that they wouldn't know for sure until Carolyn passed them. Not two minutes later, the doctor was back in the room apologizing for her first diagnosis and said that in this case it was clearly kidney stones that were causing Carolyn's distress. They could see the crystals in the urine sample.

Carolyn was hooked up to an IV drip to get some liquid into her body fast. They also gave her a narcotic to dull the pain and an anti nausea drug to counter the narcotic's tendency to cause nausea. By the time the liter of saline solution with it's piggyback drugs had finished dripping into Carolyn, she was feeling much better. With another prescription for pain medication and a directive to get lots of sleep and drink lots of water, Carolyn was able to walk out to the car with me. It was about 3:00 am when we finally got to sleep last night.

Seems like it's just one thing after another. At least we can be grateful they all don't happen at the same time.

C-day plus 77 THE END

This is a picture of a Baxter IV pump, a device that has become commonplace in hospitals and wherever Intravenous (IV) solutions are given. It measures with some precision the amount of fluid which the patient is receiving, along with the rate and the amount remaining. Prior to using these machines, nurses would estimate the fluid rate by using a drip tube and counting the drops during 15 seconds or a minute.

The significance of this particular readout on this particular screen is that it represents the alarm sounding as the last drop of chemicals of Carolyn's chemo therapy passed this pump. In other words CAROLYN IS THROUGH WITH HER CHEMOTHERAPY TREATMENTS!!!!!


Because part of her prescription included a relaxant, she slept through most of the treatment today and was still slightly groggy as the nurse began removing all the tubing and I suggested she shout for joy so I could take the picture.

If this treatment affects Carolyn the same way the past treatments have, she will not be up to doing much this coming week. Fortunately, there isn't much she needs to do and she does have some good support from church, family, and friends. Again, we'd like to thank all of you who have kept Carolyn in your thoughts and prayers and those who have made this journey bearable.

She's expecting to have three weeks of radiation therapy starting the middle of January. "Just to make sure we have [killed] all the cancer cells," the doctors said.

C-day plus 70

Today was to be Carolyn's last chemotherapy treatment but, as you can see from the above graph, her White Blood Cell Count was significantly below the normal level. So, as happened in November, her therapy has been delayed exactly one week. We thouroughly expect the count to bounce back up like it did in November. Then we'll be able to celebrate the end of this phase of her treatment.

This time we saw the results before the doctor did and were pretty sure this was going to happen. That allowed us to plan our day better and actually get something done.

C-day plus 51

Carolyn handled the first two chemotherapy infusions with such strength and vigor that both of us got a little too optimistic about the whole regimen, the fact that the Carolyn getting the third infusion isn't the same woman who got the first one. Not only does she look considerably different but her body has already been twice treated to strong toxins introduced directly her bloodstream. It's sort of like fighting off two bullies just to then see two of their larger friends heading toward you. There's only so much a person can take. Fortunately, there is more that Carolyn can do (or NOT do) to regain her strength like she needs to. She can get (and now is getting) more rest and sleep.

We both appreciate the thoughtful letters, cards, e-mails, and phone calls that come our way and let us know that your thoughts and prayers are with us.

Infusion #3

After what seemed like an eternity. but was actually only a week's delay, Carolyn's doctor finally approved the third infusion for Carolyn. Carolyn is anxious, of course, to be finished with the chemotherapy and delays such as this one are just major frustrations. As you can see from the graph above, a week's delay allowed Carolyn's white blood cell count to increase almost 500%. It certainly seems to have been the right thing to delay this infusion.

We're getting to be old hands at the routine although it does change a little each time. The whole process is down to about 3 hours. However, the wait to get a chair this time was longer than we've had before so we didn't save much time.

The last time I blogged about the infusion nursing station, several people commented on the starkness of the room and scarcity of resources. Actually, as I look around the room I see almost all the patients have "visitors", one has several family members and friends, one is using a laptop computer while her companion reads, and one is watching a movie with her husband on a portable DVD player. It appears that Kaiser is accommodating the patients without making the place look like an airport terminal.

If the next two cycles act like the first two Carolyn will be pretty tired this coming week, much more "with-it" next week, and the third week she will be almost the usual "letss-take-on-the-world" Carolyn. Since with the delay Thanksgiving will now be in her second week of the cycle. With company all over the place, she'll need all the energy she can get. We are looking forward to seeing so many of our kids and their families as well as my sister RevaBeth.

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Just saw the sad note from Jenny and Philip about her impending miscarriage. The baby according to ultrasound images measures 6 weeks old with no heartbeat. Jenny's uterus on the other hand measures large enough for a 12 week old baby. She will need to have a D & C to preserve her health and future maternity possibilities. Our thoughts and prayers are with Jenny and Philip.