A Few Harrowing Days (Medical Update - Sort of....)

Sunday Morning:

1. Hadassah Ein Kerem:  Radiation
2. Sha'are Zedek:  Chemo (Doxil & Denosumab)
1. Doxil got canceled because it does bad things when combined with radiation. 
2. Denosunab (bone drug) got canceled because my Calcium was too low.
3. My platelets, hemoglobin, and various other things were also too low, so I needed two units of blood, BUT but it was too late and I would have to return tomorrow.
3. Home: Canceled swimming lessons for the next day & Went to Sleep.

Sunday Evening: 

1. Home:  My left foot ballooned up to 2-3 x the regular size; I could barely walk.
1. My GP, concerned that thrombosis caused the swelling, sent me to the ER.
2. Sha'are Zedek:  Ultrasound ruled out thrombosis. 
1. Option: Spend night at hospital and receive two units of blood while sleeping (or go home and receive blood in the morning). Tired of running to and from the hospitals, the idea of killing two birds with one stone (i.e. getting the blood while I slept) appealed to me.  However, I would only stay if Moshe agreed to go home, to be with the kids in the morning and reassure them that everything was okay. After a bit of persuasion, Moshe agreed. I was so tired,  I slept quite soundly, despite all the beeping and buzzing.

Monday Morning:

1. Sha'are Zedek:
1. Woke up to discover I only received one unit of blood during the night.
2. Received the second unit of blood.
3. Ate three bowls of farina (solet, milk and sugar) -- I was hungry!
4. A friend (SS) came to keep me company and, when I finished, to take me to radiation.
2. Hadassah Ein Kerem: Radiation
3. Home: Slept/Rested.

Tuesday Morning:

1. Sha'are Zedek:
1. Met with Oncologist, to discuss my liver.
2. Did a Liver Scan (no results yet)
2. Hadassah Ein Kerem:  Radiation.
3. Home: Rest

Wednesday Morning:

1. Hadassah Ein Kerem:  Radiation.
2. Home: Rest.

General Info:

1. Lip still numb
2. Rt. Foot still swollen and sore
3. Still Balding from radiation.
4. Hands and Feet still red and peeling
5. Still bruise fast and heal slowly.
6. Still have severe back pain.
7. Still have hip pain and muscular pain.
8. Still have issues with constipation and stomach cramps
9. Still have low appetite and nausea
10. Still feel tired and weak.

Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

No Chemo for YOU! NEXT!! (medical update)

I felt lost and helpless.

My doctor reassured me that it was okay to skip this treatment. The chemo is working. That is not the problem. (The proof is in the pudding: my markers are on the LOW end of normal.)

It is the side effects that are worrying.

I did not think the side effects were that bad.

True, my tongue is really bothering me. I feel like I have cuts all over my tongue. Over the past few weeks, I noticed that my tongue started hurting about 2-3 days after receiving the Taxol; it healed a few days after that. This time, more than a week later, my tongue is still sore. I cannot eat any citrus fruit or even moderately acidic fruits (after eating two loquats, my tongue started burning).

In the past, I have felt tingling in my fingers and toes, but not recently. What I do feel, as I described to my doctor, is like my hands and feet are pudgy.

Now, my feet have been swollen for weeks, so it did not surprise me that they feel pudgy. But my fingers also feel pudgy.

My doctors asked if I experienced any difficulty with buttons or zippers. Since I rarely use them, I have not noticed any problems. I have noticed that I am dropping things a bit more than usual. But nothing too terrible. And a few more typos than normal. Again, nothing I can't live with.

My feet bother me the most. My feet and legs are really swollen and often feel quite uncomfortable. At times, walking is downright difficult. It is unclear to me if the swelling is related to my treatment or from some other cause.

My doctor is primarily concerned about the loss of dexterity in my fingers. He does not want to risk an increase in the level of toxicity that might have a permanent impact on my abilities to function.

He wants to see how my fingers and tongue feel after skipping a treatment.

Depending on what happens this week, he will either recommend a lower dose of Taxol or switching to a different chemo. He wants time to think.

I know that skipping treatment this time is not like the last time. The last time I missed a treatment, it was because the chemo no longer worked. This time, the chemo is working, but the side effects might be damaging.

I realize that missing one week of treatment will have no effect on my prognosis.

Still, it is an emotional blow. I feel like I am not doing anything to fight the cancer, like I am doing nothing.

When the doctor told me that we would be skipping today's treatment, I wanted him to wait, to slow down, to change his mind. I wondered what I said "wrong."

The doctor was patient. He explained everything.

Intellectually, I understood.

Emotionally, I still felt stunned, let down, all dressed up with nowhere to go....

I was about to leave when E, the woman who manages the bone research, asked where I was going.

I completely forgot that I still had to receive my bone drugs!



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA