Hi, I am Strawberry Sue and this is a journal of my recovery from breast cancer.† I donít know if it will help anyone else diagnosed with breast cancer.† Itís mainly for family and friends to read so I donít have to keep answering the same questions over and over.
Thank you to all who have sent cards, flowers, gifts, watched the boys, and other offers of help.† Itís wonderful to know that I am blessed with such terrific friends and family.
Grady, Riley, and Strawberry Sue
If you want to start at the beginning, then go to the bottom and read your way up chronologically.† This journal has gotten so long (about 15 printed pages), that I created a one page summary.
I can no longer suck on a straw, and can barely swallow. Iím getting soluble morphine and adavan every 4 hours to keep me relaxed and the pain in check. At , I stopped breathing and died. I was in the peacefulness of my own home with my husband and my loving family nearby when it happened. It was a painless and relaxing death. [Last 8 entries made by her husband Mark. We will all miss her terribly]
The doctors had me scheduled for a pleuradisis yesterday, but a senior oncologist approached us and said she didnít think it was worth the risk. She said there is cancer infiltration in the lymph layer of the lungs which is preventing me from getting oxygen into my blood. There is some fluid around my lungs, but this procedure may not relieve the symptoms. The recovery time after this surgery will be a week, and it makes the lungs painful. They are also afraid that I may not wake up from anesthesia, and would be on a respirator for a while. So I decided to just go home where I can get pain medication whenever I want it and not when the nurse happens to get around to seeing me after pushing the button. Iíd rather die at home than in the hospital, but it would have been nice if they figured all this out on a few days ago when it would have been easier to go home. I went home via an ambulance, since I need so much oxygen now.
Checked into the hospital and had to wait an hour in the lobby because they didnít have an empty bed yet. I finally got a room and they did a CT scan of my chest that evening. Iíve also switched to an oxygen mask, since the nasal canula isnít keeping my levels high enough. It also makes me feel like Iím getting air better than the canula.
I went in for chemo, but my hemoglobin levels were too low
and my breathing was worse. They took an X-ray and I saw Dr. Livingston since
Dr. Ellis is in
I visited the Seattle Cancer Treatment and
Iíve been home for a while now and have all kinds of new stuff Ė a hospital bed with power back and feet, an oxygen generator, IV antibiotic (my chest tube site is infected again), and lots of morphine. I donít eat much or do much, but it is better than being in the hospital. Iím just waiting for this ďalienĒ to shrink so I can take less pain killer and eat normal again.
Hospitalized because of intolerable abdominal pain (and my abdomen is quite large Ė I think I have an alien growing in there). Doctors think draining the fluid is too dangerous, so they hope that the chemo will reduce the fluid production. They also pumped me full of every laxative known, since they thought being constipated could cause the pain too. But in the end, that wasnít the problem. Now, Iím continually taking morphine to control pain and have low level oxygen.
Having abdominal pains. CT scan shows a thickening of the omentum (a membrane rich in lymph and blood vessels that surrounds all of your guts) and ascites (liquid filling around the intestines). Oncologist thinks it is due to cancer infiltration pumping liquids into the abdominal area. Doctor was ready to give up, but realized Taxol had not been tried. So we changed chemos to Cytoxan (daily) and Taxol (weekly). Will also be taking Zometa to harden the bones.
Now I'm on yet another chemo (Gemcitabine or Gemzar). †This better be the Gem that I need to kick this cancer. Slowly weaning off the steroid, and lungs arenít getting any worse with fluid.
Mark went with me to see Dr. Ellis.† Todayís Xray looks just like the last one in the hospital.† She lowered the dose of the heart pill the hospital doctors put me on and is continuing the steroids.† Without the Cisplatin, Gemzar is 3 weeks on and 1 week off.
Not sure how many of you heard what actually happened in my 17 days at UW hospital.† Mark couldnít stand my not breathing and took me to the ER, where they admitted me.† Doctors drained 4.5 liters of fluid from my left lung.† I still have a hole in my side that is healing slowly.† The doctors think 1. too much fluid came from new chemo (Cisplatin);† and 2. radiation lung side effects (pneumonitis); were the problems. It took them over a week to figure that out.† During that week, my heart and lungs both freaked out.† It was pretty scary.† I had one chemo treatment (GEM 2) on July 28th.† Then they gave me 2 weeks off to recuperate.†
Mark went with me to see Dr. Ellis.† I didn't have chemo on Wednesday because my blood counts were too low.† Per an †X-ray, the pleural effusion (fluid build up between the chest cavity and the lungs) is getting worse, and my breathing is getting more difficult. I run out of breath going from one end of the house to another. This is most likely due to cancer in the chest wall pumping out protein filled liquids that have no place to go. So Dr. Ellis decided to change chemo's again. Now Iíll be taking Gemcitabine and Cisplatin. This stuff is 2 weeks on and then 1 week off. It will also take longer to do (about 3+ hours).
The doctor can relieve the fluid in my chest fairly easily, and if my breathing doesn't get better in a few days I may have it done. However, until the cancer stops pumping liquids there, this is just a temporary relief measure that will have to be repeated.
Iíve gotten so far behind in my journal that I just decided to add this update.† I spent a miserable June healing from radiation burns, unable to swallow, and getting chemo (CPT-11).
Attended the Kent Relay for Life Ė Our Team was comprised of school teachers, parents, and several survivors.
More radiation treatments (RAD #15-19).† Saw Dr. Ellis at SCCS on 19th, with mom. (CPT-11,#12)
More radiation treatments (RAD #10-14).† Deb went with me to UW for chemo on the 12th (CPT-11,#11).
Back at home,
After treatment on Mondays, you see the doctor.† There wasnít anything to check after only one week.† Dr. Yao told me to keep applying the gel they gave me. †During radiation treatment, they did a filming of 3 more fields into my back.† (RAD #5, RAD #6)
I had radiation treatments (RAD #3, RAD #4) on Thursday and Friday, with a physicist (Arnie) placing diodes along with my setup.† This is to measure that I am not getting too much radiation.
The only double treatment time available was every weekday afternoon.† On Monday was the dry-run, where they set up each radiation field.† Instead of zapping me, they took films for the doctors to verify which took a couple more hours.† On Tuesday, I finally had my first treatment (RAD #1).† For 5 times they set up and zap me.† With 40 second zaps, the total time for treatment is 30-40 minutes.† The treatment technicians are Olivia, Robert, Angus, and Ellen.
Sallie and I met with Doctor Michelle Yao and resident Doctor Haleigh Werner.† Since chemotherapy is not holding the cancer growth, we will hit it hard with radiation also.† We will radiate all known disease, which due to the human shape will be complicated.† The lymph nodes in my neck, right armpit, and center chest will get treated deeper.† My left chest and armpit will get non-penetrating electrons to avoid damaging my heart and lungs.† Radiation damages all the DNA it touches.† We wonít know for a few weeks after the 6 weeks of treatment whether the cancer repaired itself like normal tissue can or not.†
They werenít kidding about the treatment being
complicated.† I spent 8 hours over 3 days
in that week of planning sessions.† They
made a cradle for my upper body, but it was still like torture.† I had to hold my arms above my head and not
move while they marked all over my chest.†
I ended up with 11 tattoos.† The
planning people were
On Friday, the scheduler for Doctor Yao
called to arrange for a Monday morning appointment and radiation planning
session at Cancer Center in
basement of the
The boys, Mark, and Markís parents (Bev and Ralph) went with me to SCCA.† Mark and I spoke with the doctor about my CT scan results.† None of my lymph nodes were any bigger, but my left lung was partially collapsed.† For fear that the cancer is pressing against my left lung, Doctor Ellis said she would talk to her radiation colleagues at the weekly tumor board.
I had Chemo (CPT-11 #8),† Bev and Riley stayed with me.
Deb went with me to SCCA.† I had a CT scan of my chest.† I had Chemo (CPT-11 #7)
So much for me having a week off of Chemo.† I picked up some tummy bug from the boys and am only able to eat rice for a couple days.
My disability at work needs renewing every 2 months, so I had the forms filled out and sent to them.† I have received bills for hundreds of dollars of physical therapy.† I sent a letter to SCCA asking why they told me I had unlimited physical therapy and submitted their bills 2 months after the fact.† Valley oncology is also confused about what I owe them, so I sent them a letter explaining what I thought I owed them.† Of course, they did not respond and keep sending me a bill that I ignore.
Yvonne took me to Chemo (CPT-11 #2).
After blood draw, Mark and I met with Dr. Ellis. †The CT scan confirmed that lymph nodes in my right arm pit, chest area, and neck have enlarged most likely due to metastasis. So once again, the doctor is holding off on radiation and switched me to a new chemo called CPT-11. I don't remember what it stands for (Causes Pain and Toxicity #11?). Initial plan is two months of this (one IV per week) before an evaluation of radiation or continue or change to yet another chemo. The doctor doesn't think the radiation people will want to radiate when the cancers are still this size. At least the cancer is still contained to the lymph system and hasn't showed up any place else.†
I had a right mammogram that did not show anything.† Although they were not able to compare it to last years films, because they are lost.† SCCA says they sent them back to Valley and Valley says they never received them.† I still have the rash on my left arm.† I guess they are not as concerned about my left arm swollenness as they are with the cancer swelling.
Deb went with me for chemo (MeN 16).† My non-existent left breast is red and both armpits are hurting some.†
I was able to get my work schedule reduced to half-time.† Since it is for Medical reasons, none of my benefits are affected and I will receive disability insurance.† This is not documented well, but I muddled my way through the red tape.
Sallie went with me for chemo (MeN 15).† I have been really exhausted.† The Procrit shots are not boosting my blood counts enough.† My left arm has developed a rash.† The doctor has told me not to wear the sleeve or wrap my arm until the rash has healed.†
Deb went with me for chemo (MeN 14).† I had a CT scan of chest and neck since I was hurting.† Nothing was found but swollen lymph nodes which is probably a virus or bacterial infection.
I went to the massage therapist appointment, but he wasnít there.† I left him 2 messages to re-schedule.† He left me a message a work that their sleeve seamstress was unable to make it, so he was canceling.† Itís just as well.† Iím way over my physical therapy limit now that SCCA has finally billed the insurance.
I joined a class at Valley called ďFocus on Healing through movement and danceĒ.† I attended about 3 Tuesdays and bought the videotape for home.† Seeing all the past treatment women was depressing and too much hugging of strangers for my liking.
Mark and the boys went with me for chemo (MeN 12) and appointment with Dr. Ellis.† The boys were out of school due to snow.† They were pretty bored with the whole thing.† Good thing for game boys.† The doctor said that my neck lymph nodes were swollen on both sides, but not any larger than before.† She ordered 6 more weeks of chemo and put me on antibiotics.
Appointment with Valley Physical Therapist, Melissa.† After only 3 visits, she sent me on my way.† She said I was too close to my insurance limit for the year to continue seeing her.† I have been playing phone tag with a lymphedema massage therapist.
Deb went with me to chemo (MeN 11).† I had a CT scan of my neck.
Mark went with me to chemo (MeN 10).† Then we made our way up to LaConner for Christmas. The boys were already at grandma and grandpas.
One full year since I was diagnosed.†
Mark and I visited Dr. Ellis to go over Sue's last CAT scan. It looks like some spots that were on the previous CAT scan have disappeared. But they we're just barely visible last time at the fringe of the machine's resolution. It is good news that they don't show up and are not bigger. So it appears that the chemo is working. The neck tumor feels about grape size now, where it was walnut sized before.The doctor wants to continue with chemo for 3 more weeks and do a CAT scan of the neck.† Then, she may start radiation or maybe do more chemo. She'll keep taking the Xeloda during the radiation period, and when radiation is done go back to the full Xeloda/Methotrexate/Navelbine for a while.
Sue also picked up her lymph edema sleeve. The physical therapist isn't happy with the lack of progress in reducing the arm size and softening up the arm and chest tissues. The radiation makes this worse, so she really wants Sue to find someplace for 3-times-a-week lymph massages. Hopefully, this, plus the sleeve, and her daily stretching, will soften things up.†
I had chemo (MeN 9)
Deb went with me for chemo (MeN 7).† My range of motion was improved during physical therapy.† The dietician checked back with me and had suggestions for raising my calcium level.† Who could say no to caramel chews, (Viactiv).
My hair has grown back nicely. I havenít worn a hat in some time.† Now the morning choice isnít which hat to wear with my clothes, but which boob (prosthesis) goes with my clothes for the day.
Karen took me to chemo (MeN 6).† It took much longer that expected with Thanksgiving holiday business.† My counts were low enough to need a procrit booster shot, but I was one day too late to join a study.† We did make it to get my lymph edema compression sleeve fitting.
I am back to work.† It seems just like I was here yesterday (Same old, same old).† Only 4,641 days until Iím eligible to retire.
Mark and I saw physical therapist, Andrea.† She showed us range of motion stretches ( flexion, abduction, external and internal rotation).† She took measurements of both arms and the left one is about 2cm larger than the right at each measurement.† She also lectured me about resizing my wedding ring.† We stopped at Southcenter on our way home to pick up my bras and drop off my ring for re-sizing.†
Deb went with me at for chemo (MeN 4).† We told them I didnít want to be queasy afterwards, so they got me the good stuff (Zofran).† Our ulterior motive was that we went and saw the ďMatrix RevolutionĒ at the IMAX afterwards! †Once again the nurses pumped my Navelbine IV in twice as fast as recommended.†
Mark and I met physical therapist (PT), Andrea.† She mostly took a lot of information from us.† She examined my scar and measured my left arms range of motion.† Then we saw my oncologist Dr, Ellis.† She couldnít feel any hard tumors in the neck lymph nodes.† It appears that the chemo is working great!† She ordered another 6 weeks.† She also had signed my ďBack to WorkĒ forms.† We had lunch in the Cafťí after we met with the scheduler.
†I am feeling very well healed from the surgery,† the chemo is only causing minor digestive problems,† and my disability leave is up on November 15th, so I think Iíll just go back to work.
I now have a left breast prosthesis.† It seems odd that my medical insurance will reimburse Nordstrom.† But that was the closer place.† I called the experts in Seatlle, but neither place had anything large enough in stock.† I selected 2 different bras that Nordstrom seamstresses will add a left pocket in.† They also had me get a soft pad to place behind the prosthesis, so it is closer in size to the right side.
I found 2 manufacturers in my web searches that make a size large enough to match my right side.† I ordered the nicer looking one from Jodee.† One web site also sells items I had never even thought of for men to look more like women.
Deb took me at
for chemo (MeN 2).† Deb was not thrilled
with the secretive oncology suites or the nurseís ability to use the IV
pump.† She thought Valley was much
nicer.† We planned to eat dinner at ďTwo
Dr. Ingber called to see how I was doing and if there was anything he could do.
I called to talk to Valley oncologist Dr. Ingberís nurse Lori, and she was no longer working there.† That might explain why Dr. Ellisís office didnít get much of my chart.† It also made the decision to go to SCCS much easier.† I left a voicemail for Dr. Ingber that I would be treated at SCCA.† I also left a message with Dr. Rinn that I was going to SCCA on her suggestion.
Mark and I went to the Seattle Cancer Care Alliance (SCCA) today. We talked to lots of people (Doctor's assistant, Doctor's nurse, Doctors scheduler, the doctor, the Chemo staff, and more to come), but rather quickly decided to start chemo right then and there. So Sue's now being treated by the SCCA and will probably abandon her previous oncologist. The doctor (Georgiana Ellis) thought the XMeN approach was best. This is slightly different than her study (no "Me" in the study trial), so this will be off study.
The chemos are Xeloda, Methotrexate, and Navelbine so that is where "X-MeN" comes from. Thought the name was cute at least... So today she got a Navelbine IV and then a shot of Methotrexate. These will be repeated weekly. She also got Xeloda which is taken orally every day for two weeks. Then you get a week off of it. We'll do this for up to 3 months if the lymph tumors don't grow or shrink. If they get larger, then itís regroup and try something else.
After 3 months, and with hopefully reduced lymph tumors, then she'll get radiated. After the radiation, then it is probably another 3 months of this chemo to make sure it is all killed.
Overall, I liked the SCCA as they have most everything you need in one building. She even got a flu shot today down on the first floor, and we ate in the cafeteria on the second floor.
Sue thought the SCCA was less personable than where she was in the past, but they seem to deal with a much larger volume of people. They have 45 chemo booths whereas Valley General just expanded from 4 to 9.† Some delays occurred because of misplaced paperwork, but to me they seemed more on the ball than Valley. They also said this was kind of anomalous since we weren't originally scheduled for chemo today and we were forced into the schedule.
Mark and I met with Dr. B, radiation oncology, early this morning.† He thought going to the UW for their opinions was a good idea.† He didnít think I was healed enough do measurements for starting radiation anyway.† He said that if the chemo isnít working after 4 weeks, that I should have radiation.† We were back home before the boys even went to school.
The fluid in both my drains was down to less that 30cc every
24 hours, so I called surgeon, Dr. Lauís
Mark took me to my am therapy appointment where she measured both arms in 7 places.† The left arm was around 2 cm larger than my right in all the measurements.† She gave me a few exercises to do at home and put me to sleep with doís and doníts.† They had me make 6 more appointments in the next 2 weeks for massage and wrapping.† Once the swelling is down, I can be fitted for a compression sleeve.
We made it to Swedish Cancer Institute by my appointment.† After a 40 minute wait, we saw Dr Kristine Rinn.† She had the final path reports, all the scan reports, and I brought her my films.† Her suggestion was to wait on radiation and join a study at the UW for 2 approved chemos that hadnít been taken together before (Xeloda, Capecitabine and Navelbine, Vinorelbine).† This is a more systemic approach to killing the cancer.† She thought another chest and neck CT scan would be a good starting measurement for checking treatment results.
I spoke to Lori about the MRI results.† I do have a brain and there was no cancer in it.† The MRI was confusing around my cervical area, so they want me to do neck cervical bone MRI. (YUK).
Mark and I saw surgeon Dr. Lau at to review the Path report.† They also took the bandaging off my incision.† I have one large incision from under my arm across my chest with 20 some surgi-strips.† The 2 drain hoses are hanging out below my incision.†
At we got a call from Dr. Ingberís office asking if I knew that I had an appointment at .† I didnít know, but all 4 of us went there to see what he had to say.† The boys were not too happy that they had to sit in the waiting room for more than an hour, but the receptionists did give them cookies.
Dr. Ingber reviewed the pathology report with us.† He still didnít have a good explanation of why the cancer grew so much while on treatment.† As soon as the surgeon okays that I am healed enough, I will start another chemo along with radiation to the neck, armpit, and chest.† When the full pathology report is in, he will confer with other oncologists about what chemo to start with.
Invasive ductal carcinoma
9/9 for fast growing, grade IV
15 x 12 cm tumor in left breast
13/13 positive lymph nodes
Estrogen negative, progesterone negative
They moved me to room 2108 where
Mark was supposed to arrive at the next morning, but overslept his alarm.† Dr. Lau came in at and said I could go home as soon as the nurses could release me and someone was there to pick me up.† I waited another hour for the nurses to change shifts, then I asked them to unhook and release me.† I was home by , where mom and dad were waiting.
When the boys came home on Tuesday, they wanted to know how many stitches I had.† I was still wrapped in a big ACE bandage, so I didnít know.
Bad News Week @#$%^&*††
The PET scan shows activity in my left arm-pit, chest wall, and
neck.† The MRI shows swollen left arm-pit
lymph nodes and thickened breast tissue.†
My doctors have never seen cancer spread like this before, especially
while on the aggressive chemo that I was on.†
They want to do surgery, because only the lab can tell for sure if it is
Good News: The mugascan, gate blood pool showed my heart operating at 68% which is better than normal of 60%.† Also, there was no suspicious PET activity anywhere else in my body.††
The PET scan was like being pushed through a lifesaver candy.† As soon as my head came through, I could rest my arms from above my head.† They played music for me to listen to.
To Overlake for Open-MRI at .† It took about 2 hours.† I felt like a weenie in a giant hamburger bun.† It was difficult to lay still that long, but I guess it was practice for tomorrowís PET scan.
Stopped by Dr. Ingberís office after picking up prescriptions.† My arm-pit was really in pain.† They took blood that didnít show any infection.† The doctors have no idea why I am in pain.† They are just waiting for more test results.
Drove to First Hill Seattle for special resolution breast MRI.† I could not fit into the tunnel machine, and was back home before the boys went to school.
The radiation measurements (tattoos) were checked with a CT scan.
I met with oncologist, Dr. Ingber.† The mugascan results were not back yet.† The bone scan was the same as prior to chemo.† The CT scan was confusing with swollen lymph nodes.† So, Dr Ingber postponed my starting radiation and ordered more tests.
Radiation oncology for measurements in the am.† I made Mark take me, but he wasnít allowed in the room.† He had fun working on the lighthouse puzzle in the waiting room, that mom and I started the previous week.† It took almost 2 hours to mark me up and determine where to put the tattoos.† Iíll have to come back Wednesday, the 10th to check the measurements.† That afternoon was the mugascan (heart gated blood pool) test.† Technologist Brian told me to come early, yet he didnít inject me until after my appointment time.† Mark and I waited the allotted minutes, then Brian put me in the machine.† Mark was able to sit with me while the test ran.† Brian had a radio with his own music that was competing with the office music system.† At least Iím done with these tests?
I woke up feeling awful.†
Luckily mom took me to my CT scan and bone scan.† I chugged down the wonderful barium drink for
the CT scan, only to throw it up after the test.† The first bone scan injection, where she
attempted to use my port, spilled all over my clothes, so I had to get another
injection and come back that afternoon in different clothes.†
Having pain in armpit again.† Taking anti-biotics already for sinuses, Zythromax.†
Karen took me at for my last chemo ( TaxatereT12)† The nurses gave me a pink ribbon pin and card signed by most of the staff.† Deb joined us for the final rite.†
Sindie took me at 1:30 pm for Doctors appointment and then chemo (Taxatere T10).† She got to meet most of the gang in the office.
The boys have been at Grandmas all week going to mulit-sport
day camp in Anacortes.† I went up
Thursday to watch them tubing behind Grandpas boat and then watch camp on
Friday.† Well, I never got to watch them
at camp.† I had my seventh bloody nose
and we couldnít get it stopped.†
Deb took me at for chemo ( Taxatere T9).† First day of Medical Disability Leave.
Mark took me at for chemo ( Taxatere T8).† He picked up the boys at 3pm from camp and brought them back to see the last half bottle of my chemo.
Sallie took me at 7:30 am for 9am surgery.† Dr. McFall installed a new port on the left side and removed the old port on the right side.† I spent several hours sleeping in recovery, mostly because they were really busy.† I also slept through my chemo ( Taxatere T7) that afternoon.
Chemo Taxatere(T) 5 and T 6 through IV in hand - Deb took me.† She stayed to gab and look at Sunset magazines.† Weíre also researching medical careers for a friend, Cindy.
No nausea with the Taxatere(T), but there are some other not so wonderful side effects.† I feel hyper and hot the day-of and the day-after treatment.† Then I have muscle aches, anxiety, dizziness, and fatigue for a few days.† The scariest thing has been the nose bleeds.† So far I have had 4 of them.† If I would stop panicking, they might stop sooner.† Iím much calmer when Riley has them.† He has also been the one to comfort me through a couple of them.† Deb came to my rescue one morning that I had one and was trying to get the boys off to day camp.
Chemo T 4 through IV in hand, my port would not infuse or aspirate, mom took pictures.
Radiology did a dye study of my port - determined it was broke and leaking under the skin.
Surgeon, Dr. McFall, says that some times ports will break.† Scheduled install of new port and removal of old port for morning of July 16.†
Rileyís classmate Briana donates a luminary for me at the
Chemo T2 with mom and T3 with Deb.†
Saw Oncologist who said I was healthy enough to start Taxatere.† Got a ride on the Valley shuttle, which was the most dangerous part of the day.† Volunteer elderly drivers, on oxygen, like to turn in front of other cars!!
Start Chemo Taxatere (T 1) at ATU in Hospital.† 6 hours later, including a nurse shift change, at almost 9pm the girls picked me up.† At least they have a TV, although it was on the man-action TBS channel.
Chemo AC 4, dreaded last one, but only 4 days of nausea and flu-like aches.
Chemo AC 3.† 5 days of nausea and flu-like aches.† I was miserable.† Now, I have sores in my mouth and a sore throat.† They gave me this horrid tasting mouthwash that actually makes my mouth feel better.
They call me in.† I pick a chair.† They access my port and draw blood.† Start filling me with saline.† When blood test is back and close to regular ranges, they order the hard stuff.† First they shoot and drip the mixers ( pre-meds Ė 2 different anti-nausea drugs,† steroids for countering inflammation of Taxatere).† Then the hard stuff, chemo: †the Cytoxin and the Taxatere were just long drips.† The Adriamycin was a huge syringe that they would administer slowly.† Adriamycin is the really hard stuff ( It is red going in, port required to not burn tissue, and itís red coming out).† After some more saline to flush, a small shot of hepharin to anti-clog my port, un-hook me, and someone needs to drive me home.† This typically take about 2.5 hours.
My blood counts are taken 10 days after each AC Chemo.† This time the Hematacrit was way too low (30, when the low normal range is 40).† So they started me on weekly Procrit (Apoetin) shots.† Itís amazing how many commercials you notice about drugs once you start taking them.
Chemo† AC 2. 3 days of nausea, same flu-like aches. Is it just the day-after Neulasta shot?
Losing hair in chunks.† Tired of leaving a trail of hair, especially in everyoneís food.† Had hairdresser Debbie shave my head and trim my wig.
Of course I took to hat shopping like I do most shopping and have purchased at least 16 hats, scarves, and turbans.† Debbie got me a pretty pink Kangol beret.† Yvonne got me a multi-color flowered brim hat that goes with many colors that I wear (see photo above).† Only the Mariners store has large enough caps for me.† Deb and I like to have lunch in the Food Court after shopping there.††
I ordered a $40 large wig through the TLC catalog.† I stretched it over a soccer ball.† Hairdressor Debbie trimmed it to flatter my face.† It is hot, ichy, and I have to keep pulling it down from humping on top of my head.† I think it shrinks each time I wash it.† It is the easiest thing to grab in the morning.† Iím sick of trying to match hats with my clothes.†
Woke up to major pain and swelling in armpit.† Went to work, but just felt worse.† I got an appointment with surgeonís partner
for afternoon.†† Went home and took
nap.† Attempted to tell Dr. Lau that I
had felt fine for 2 weeks, but now my armpit was swollen, hot, and in
pain.† He would not listen or do
anything.† I went up to oncologist, Dr.
Ingberís office.† Nurse Lori did blood
tests and they put me on anti-biotics.†
They sent me to the vascular lab, where they made sure I didnít have a
blood clot.† Luckily, my angels,
By Sunday, my armpit had blown out again.† Mark went back to packing it regularly.† I took the week off from work and just laid around with my arm above my heart.† After 4 more weeks, of visits to surgeon, Dr. McFall, and painful to use, it was healed again. I was able to continue my chemo.
I also started having swelling in my hand.† This is called lymphodema and common when lymph nodes have been removed.† With exercises, minimal use, and a glove, I have been able to defeat that.†
Install port-a-cath and start AC Chemo. †Sallie picked me up.† I felt okay that afternoon and went to watch boys practice basketball.† 2 days nausea, Neulasta shot to raise white cells causes many bone aches, feels like flu symptoms.
Appointment with oncologist, Dr. Ingber who made sure I was healthy enough to start chemo tomorrow.†
My first wig and hat shopping trip with Deb was to a big
shop in Federal Way.† They had a huge
assortment of normal size heads.† I tried
on the 2 extra-large wigs they had.† Deb
thought I looked like I should go to a prom in them as they were too small and
humped up on my head.† They could order
me a extra-large male long hair cross-dresser wig for $500.† I donít think so.† I did find a nice scarf like hat, that I
love.† And of course we went to lunch at
Marie Calendars afterward.† I saw
Sallieís friend Tracy and her parents, all the way from
Mark and I met with Dr. Kristine Rinn, Breast Cancer Oncology specialist at Swedish for a second opinion. She recommended the same course of action, although she mentioned some alternate treatment options (you can pick from bad and worse).
Mark and I met with oncologist, Dr. Ingber and scheduled me to start Chemo after I go on a camping trip next weekend (which was planned a year ago) with my mom and sisters. Attending a remote camp a few days after chemotherapy was not a good plan.
More tests - Blood tests (Okay, with breast cancer marker at 25 < ), Bone Scan (No cancer Ė just known arthritis in knees and lower back), Heart Scan (Mugascan, Gated Blood Pool); To make sure heart can take the Adriamycin, PET Scan (Unable to do at Seattle Nuclear Medicine); To try UW later.
Finally. an oncologist appointment after multiple weeks of calling and referral confusion.†
Mark and I met with Dr. Ingber at Valley Internal Medicine to discuss treatments.† He confirmed what surgeon, Dr. McFall had said they discussed at the Tumor board.† It should be treated aggressively to lower the chances it will recur.† His top choice for breast cancer is an Adriamycin/Cytoxin chemotherapy regimen.† He ordered more tests.
We met his nurse Lori, who is just the sweetest person (As Deana at work had already told me).
Armpit incision is leaking fluid.† Those steri-strips didnít stay attached too well in an armpit.† Saw Dr. McFallís surgeon partner, who showed Mark how to pack the wound.† This he had to do 2 -3 times per day until it drained less.† At school, Grady even drew a picture of Mark poking my armpit with gauze!
I then saw Dr. McFall weekly at the breast center until it healed in 5 more weeks.† I got to know nurse Patty and check in with nurse specialist, Sherry.† They have been very caring listeners throughout this process.
CT scan Ė Took forever to get an IV started in my hard to find, rolling veins.† There was plenty of nice people there.† Results only found 2 small dots on lung, that is probably scars from infections.† No suspected metastasis, or spread to other parts of the body.
Post Op surgery appointment looks good.† It could take 2-6 weeks to heal.† With the left arm pit sore, I am trying not to use my left arm.††
Invasive ductal carcinoma
Grade 1c, 8/9 fast growing
1.8 cm tumor in left breast
8 negative lymph nodes.
Lymphatic invasion present
Estrogen negative, progesterone positive
Surgery with Dr. McFall
Ė wire guided lumpectomy, with sentinel node removal.† Mark took me in.† After pre-op I was sent to the Breast Center
where they used ultrasound to place a wire into the lump, then onto Nuclear
medicine for the sentinel node search.†
This took over 90 minutes, was a little claustrophobic under the scanner
machine, but they finally† whisked me
back to surgery.† There is an incision to
remove the lump and an incision to remove lymph nodes from my armpit.† Sallie and
It was a very long weekend wondering what the biopsy results would be.† At Tuesday morning, Dr Butler reviews the pathology report with me (invasive ductal carcinoma, small <2 cm tumor, and fast growing).† He had made me a to-do list.† He had printed a short version and a long version of breast cancer information sheets.† He was very nice, but I couldnít stop crying.† I went home and tearfully called those who were waiting to hear the results.†
It was Tuesday, so I went out with the girls that night.† Mark spent the whole night researching breast cancer and knew more than I did when I got home.† The boys reacted in their own way.† Grady was like ďWell, they need to get that cancer out of youĒ.† Which I explained with a small tumor, taking it out is first.† Riley was worried that I would die.† I just told him most people donít die from breast cancer.† Cancer kills when it spreads and takes over organs that you need to live.† You donít need boobs to live.
Ultrasound guided, needle core biopsy.† They numb you, but the vacuum-assisted needle felt like getting your ears pierced each time it took the 6 tissue samples.† I was quite bruised and my skin reacted to the tape they covered the wound with.
It was a 4 hour, long appointment of mammograms, ultrasounds, and magnified mammograms.† Irregular solid mass found at 12 oíclock in the left breast.† I could not feel it at all.
I mentioned to my doctor (Dr. Butler) at Valley that I had pain in my armpit.† He referred me for a mammogram and ultrasound.† Since I had no risk factors or family history of breast cancer, I had planned to get mammograms every-other year.† My previous mammogram was in August of 2001.